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Gluten Dude

There are so many people out there struggling…in pain…in a fog…not knowing what is wrong with them and desperate for answers, when in fact it could be celiac disease. After hearing so many doctor horror stories from you this past year, it’s painfully obvious we can’t solely depend on the medical community to accurately diagnose celiac disease.

So people turn to the internet looking for a solution. The problem is that many of the medical websites fail when it comes to listing the symptoms of celiac disease. It’s all very generic: bloating, vitamin deficiencies, failure to thrive, etc. We all know it goes much deeper than that.

What we need is a list of the specific symptoms of celiac disease from those who have been through it….actual celiacs.

So today, I am reaching out to you to help all of those undiagnosed celiacs out there.

Please share in the comments below the symptoms of celiac disease that you struggled with, both before diagnosis and even since. And then once I have everyone comments, I will document a complete list and publicize the heck out of it. We need to get the truth about celiac disease out there.

As always, your input is more than appreciated.

Dude Note: Based on your awesome responses below, I have created an infographic of your celiac disease symptoms that has spread like wildfire. Check it out.

248 thoughts on “What are Your Celiac Disease Symptoms?

  1. Wow. Where do I even begin? 24 years I went un-diagnosed! Horrible skin rashes, migraines so bad I was hospitalized a few times, serious bloating, diarrhea constantly, ulcers, horrible mouth sores, oh so tired ALL THE TIME, and at 30 I was told I had the beginnings of osteoporosis! When my kidneys and liver started failing last year (also at the age of 30) my doc finally gave up and said, “I’ve got no more ideas. Maybe it’s food. Try a dietician” In one meeting with my dietician she immediately knew what it was and sent me for testing! In 30 mins she had discovered what doctors had been trying to work out for 24 years!!!!

    I’ve been GF since October last year now. Migraines are non existent now, ulcers are still painful, but getting better. Still have sores in my mouth, but they’re fewer than before. But best of all, within 6 weeks of being GF, my kidney and liver function were normal! No transplant or meds needed!

    I’ve got a long way to go, but I know I’m on the right path now.

    • Christen, your story sounds so much like mine – except it took until I was 37 and was sent to a liver specialist. Started gluten free October 2011.

      I think I’m repeating what’s been said here but to concur, symptoms pre-diagnosis:

      Migraines
      severe anemia, fatigue, shortness of breath
      elevated LFTs ( Liver functions)
      overall bad bloodwork: low everything – platelets, vit Bs, etc.
      mouth sores, splitting fingernails
      brain fog, feeling numb
      bloating

      After one year being gluten free I was re-tested on all bloodwork and everything was back within normal range! I could hardly believe it.

      • Oh.. and I forgot anxiety, depression and hair loss!!

        It’s amazing how many different parts of the body are affected – not just the digestive track!! Crazy.

      • And also add:

        Joint pains (initially diagnosed as rheumatoid arthritis)
        PMS (lots of it)
        Adult teeth grew through without enamel

        Finally diagnosed aged 38, 32 years after the first symptoms became obvious. Gluten free over 4 years, and feeling healthier and more energetic than ever before.

    • Hi Christen,

      I use to have mouth sores all the time caused by Celiac Disease, inside and outside. They were the bane of my existence. I started taking 2000 milligrams of Lysine everyday and knock on wood, have been clear for the last 6 months. Just a thought that might help.

    • Hi,
      I have not been diagnosed with anything as of yet. For the past 2 years my periods have been terribly inconcistent, I went almost an entire year without having a period- they just stopped! I would get diarrhea almost after every meal, bloating and gas- mostly after eating dairy an gluten. I never had any energy, was constantly lethargic- which is weird as I am 15 years old and should have the most energy I’ll ever have in my life. My nails are always weak and yellowing, and I would get tingling in my fingers at the touch of a tap. I am normally a very academic person, however my grades began to drop and I found it so hard to concentrate on anything and peice thoughts together. I went and saw a naturopath and had an intolerance test and came up intolerant to most of the grains, oats, gluten, wheat, etc. aswell as all dairy. Since then I have completely cut out all of the above foods- except I ignore traces of dairy and gluten since I figure it can’t hurt. I am still getting all of the above symptoms. I notice that coffee always upsets my stomach. My mum is studying to become a herbalist and has used me for patient assessments and has just put my symptoms down to stress. She put me onto vitex tablets, which regulates my periods, but if I don’t take the tablets, I don’t get my period. I’ve gained 4kg since going wheat and dairy free and I don’t know what’s going on
      I’m going to see my doctor next week. Has anybody got any idea of what may be causing this? Is it celiacs- I’ve cut out wheat and gluten but are traces of wheat stuffing me up? Or is IBS or some thyroid problem?
      Thanks :)

      • Food with gluten in it, that is the size of the tip of your pinkie will keep you inflamed for 6 months. Please STOP CHEATING, and treat yourself to a better life!

      • Hi Gabrielle,

        Have you looked into Hashimoto’s disease? Or Addison’s disease? It sounds like it may be something to do with your thyroid. Look it up, check your symptoms, and have your thyroid checked. But make sure your doctor knows of your concern about your thyroid–the ways they test it vary, and often they say “you’re fine,” when in fact, you are not. The thyroid should be tested with a saliva test, I believe. Whatever you do, get it checked out and fixed, with diet and supplements, because you are too young to be feeling so badly. Good luck.

        Janis

      • Gaibrielle,
        Did you ever find out what the problem was? I’ve been having a lot of the symptoms you’re described. I cut out gluten a while ago and I was recently tested for celiac disease. My doctor didn’t ask me if I had been eating gluten recently or not. I realized after I got home that you have to have gluten in your system to have a positive result. I now don’t know if it’s gluten or something else.

        Everyone in my life thinks I’m crazy and I’m starting to feel that way too.

        Hope you’re doing well.

        • Same here ! A big thanks for all the doctors you “accidentally” forgot to advise before a surgery to find out if you have the celiac disease to keep eating gluten … Result, a surgery and other tests later, i still don’t know if i have the celiac disease or no. I juste know gluten is not my friend !

      • Gabrielle, you might have low thyroid function. Hypothyroidism. I had that too at your age, most of the same symptoms. It feels like you’re fading slowly. They can diagnose you with a blood test that measures hormone from your thyroid. Get it done, it is simple enough. You don’t want to end up in a thyroid coma.

    • I have been diagnosed coeliac for 8 years and follow a strict diet (never treat myself) however sometimes I know I’ve had some gluten. I fart (putrid) get easily irritated, my eyes are really heavy (not body tired, just my eyes) and my dermatitis gets itchy. Frustrates me because I wonder how much healthier I would be if I could avoid it completely!

      • I have had Crohns disease for 30 years which has a lot of the same symptoms as Coeliac disease, I have undergone four resections over the years and have little functional bowl left. however, my last operation was just 2 years ago, since which my symptoms of Diarrhea, Stomach Pain, Bloating, etc. etc. suddenly got extremely worse, especially producing absolutely foul stools and wind, when I told this to my sister-in-law (who is Coeliac) she suggested I cut out Gluten, I am still waiting to be tested my my Doctor? I have been adhering to a gluten free diet for some months now and it has been easier, but far from perfect, I cook almost everything we eat and make my own sauces etc. my partner has even joined me in this quest and found some benefit herself, like lack of bloating following a meal, but I still have some very bad days, days where I can hardly be bothered to get out of bed, days when I have diarrhea, never ending and gross smelling wind and massive exhaustion/fatigue I am on a cocktail of drugs and am still undergoing tests at various Hospitals for both Gastro and Rheumatic problems, I sometimes worry about Altsheimers as my memory is so bad, in fact I came to my computer today to do something else, but now I have found this blog have completely forgotten. what do we do, how do we convince Doctors to test for other things, whatever my problems happen to be the standard answer to me now seems to be, “well you have got Crohns disease you know” like that is the only possibility?

        Paul Furniss.

    • Omg!! For the past year I’ve been having the same symptoms!! It was like all of a sudden my body chemistry changed and I started having all these issues. Especially the painful mouth sores and the lack of mental sharpness I once had. I’m definitely going to tell my doctor to check me for celiac.

  2. Panic attacts, being depressed, being tired all the time, low Iron and B12, stomach pain, bad skin, dizzyness, Almost every 4 to 6 weeks sick (not with flue, but just not feeling well. Enough to stay home from work).
    Those are a few things that I had when I wasn’t diagnosed yet.

    Now that I am, I still have days that I’m exhausted. I’m also not able to use a handmixer or even a wisk for longer than 1 minute, because my arm starts to hurt with cramp (So thank god for the kitchen aid I have!). I notice that once in a while my joints start to hurt
    And when I have those days that I’m exhausted, my panic attacks starts to come back. With is the most horrible thing of all.

  3. Before diagnosis- Tremendous weight loss via chronic foul smelling fatty stool diarrhea, stick like legs and a huge bloated belly. There was little to no absorption of anything eaten, all food would pass chewed but undigested in about five minutes. Nausea, bleeding hemorrhoids, stunted growth,iron deficient anemia, electrolyte imbalance, fatigue, mood swings, tooth discoloration, academic failure in school, joint pain, lethargy, mouth ulcers, and the worst smelling gas that would clear rooms. I became so weak that I passed out while having a BM while vomiting and was hospitalized.

    After diagnosis- Weight gain (it can stop now) resume normal activities, anemia resolved, academic problems from Celiac resolved, joint pain resolved, mouth ulcers resolved, and the foul fatty diarrhea and gas resolved. Belly still bloats daily and I have episodic diarrhea and gas. The smell and consistency of the stool is different from before diagnosis, and the cause has not yet been resolved.

    • David that’s exactly what happens to me if I consume dairy – since gluten and dairy issues often go hand in hand – have you tried going dairy free?

      • I have not- I’m actually afraid to. I really don’t want to eliminate anything else. But I might since you had success with it. It’s gotta be hard, too, to not have dairy.

        • David ~ Hi I just figured out I have had Celiac Disease for over 4 years (I just turned 53) it started after a major hysterectomy my body never bounced back from & then I started getting sick, depressed, all things that I had never had before, couldn’t eat foods I had always eaten. Lost weight, bad BM & throwing up during & passing out at the same time. My husband finally realized I got sick when I had milk *for sure* so I cut it out & start on Lactaid (taste just like regular milk) I now eat Lactaid Cottage Cheese, Ice Cream that is Dairy Free, and every is Dairy free!! It has made a huge difference in my system not struggling so much with being sick so much, please try it I think you will find it will be a big help to your system. Blessings to you in 2014 for a healthier body!

          • Hey, I’ve been experiencing similar symptoms to David. I’ve been sleeping for 13+ hours a day, I feel weak and fatigued without having done any physical activity. I had severe nausea and diarrhea after eating something and I went to the ER later that night. They told me it was the stomach flu (gastroenteritis) and said that I would feel better in a few days. Since, my appetite is non-existent and it becomes challenging to eat because I am absolutely not hungry. I also have been having strange bowel movements, I went from diarrhea to constipation, back to normal and back through this cycle. My stools have been yellow and quite foul-smelling and have been this way for about 2 weeks now. I have also suffered from excess gas for quite a while now. For the past several months I have had bad anxiety and stress due to an ongoing medical endeavor involving my thyroid. The past 10 days I have also had a pale complexion and puffy looking face, and it has almost looked even a little yellow at times. Could I be suffering from Celiac or am I over analyzing my symptoms? ** I have been told I have Subacute Thyroiditis and I have been suffering from general fatigue and weakness due to that, but recently it has become extreme and this leads me to believe it is something else.

            • Lisa, have you found out anything on your symptoms and what is causing them? My mother is having very similar symptoms. We have been to the ER, admitted to the hospital, been to her Doctor several times and they have come up with nothing. So we are at a loss and I don’t know what to do.

        • David, a word of encouragement about stopping dairy: it doesn’t have to be forever.

          My understanding from specialist books, borne out by my own experience, is that dairy causes problems in coeliacs until enough of the underlying damage from coeliac disease has healed.

          In my case, my main problem was severe arthritis, as well as all the standard bloating/dairrhoea etc. I was on crutches for a while. To combat this, I stopped eating dairy and reduced my gluten consumption (by which I mean I frequently gave in to delicious looking cakes!) for about 15 years, from age 33. Towards the end of that period I stopped eating gluten completely, because it became clear my son was coeliac. After a couple of years of not eating gluten at all, I am now able to eat dairy with no symptoms at all and eat lots of it. I will never knowingly eat gluten again – when I have accidentally done so, arthritis kicks in immediately.

          It took a long time to get used to soy milk, but believe me I do actually prefer it now! And there are plenty of good soy yoghurt and chocolate mousse type products out there. Going without cheese is hard for some, but hey so is feeling ill all the time! If you do stop dairy, keep a check on your calcium: despite doctors repeatedly telling me there were plenty of non-dairy foods that provide calcium, I was calcium deficient for many years until…. I resumed eating dairy.

          Good luck with it all.

    • I had this, its candida & a pain to solve. Find a functional medicine doc & be prepared for months of pills & food elimination. Apple pectin pills daily (or 12 medium apples daily your pick) help quite a bit to keep the “critters” at bay. Dairy free also helps

      • Are you saying that Celiac is Candida? If so, I really would like to know because I was just diagnosed with Candida through my natural health consultant. Just showed up a couple of months ago. I tried the baking soda/maple syrup mixture and I just couldn’t stomach it. He has had patients completely healed with doing this. I was going to try again after Christmas and really stick to it and cut everything out of my diet. But, I NEVER heard that Celiac was Candida. I don’t have a lot of symptoms…none really. Where did you get this information? Thanks for posting.

        • absolutely! Celiac disease caused my Candida, IBS, easy bruising, joint pain and chronic morning diarrhea. I have one word for all of you celiac sufferers…..PROBIOTICS!!!!!! after 38 years of suffering, probiotics have been a godsend. It really should be considered a cure for celiac disease because once I started taking them, all symptoms went away, I mean everything! Chronic diarrhea every single morning, gone!taking a strong hi dose probiotic along with a strict gluten free diet will do the trick! I promise you! it won’t happen overnight, but if you just keep taking the pro biotic (ultimate flora critical care) you’ll see your symptoms completely go away. I’m talkin supplements, not yogurt or Activia or any of that other stuff..not that there’s anything wrong with activia yogurt, it’s just that the probiotic supplement is much stronger and more effective. Good luck and good health

    • David,

      PLEASE, ask your doctor to do a stool sample and test for – Colostrium Difficile ( C-Diff ). I contracted it after being on a high dose of antibiotics for a blood infection. Or, it just may have been in my body but kept at bay by my good bacteria, until the antibiotics lowered my ability to fight it. ) It’s very serious disease and please if you’re finding that you fit the symptoms ask to be tested.

      Symptoms

      - foul smelling diarrhea
      - gas & bloating
      - lethargic / dizziness
      - stomach cramps / back pain
      - weight loss
      - cramps
      - fluffy / light stool ( may contain blood )

      C-Diff is a bacteria that is found in soil, on animals ( including ourselves ) and other common places I.e hospitals..basically it’s all around us.

      You should be VERY suspect is you’ve recently been on antibiotics!

      *** pls note it is contagious ! It can be fatal to the elderly, infants, and people with seriously comprimised immune systems. Spores released from having bowel movements can live in your toliet or any surface you’ve touched ( that came in contact with feces ) for months. Bleach is the only way to clean surfaces and toilets etc…

      For more information you can google this infectious disease.

      • Hi guys. In relation to c diff we are more susceptible as coeliacs as our gut flora is different to non coeliacs. It is a constant battle for our gut to work at all let alone healthy bacteria. Masses do pro biotics are needed. Make some yoghurt yourself and add a satchet of kafir mix as well. Eat ONLY FERMENTED SOY. Soy products can be harmful especially for you guys in the states as they are often gm and the phyto oestrogens are higher. Sauer kraut is a good pro biotic food as well. Avoid sugar including drinks designed for rehydration. C diff lives on sugar. A Mediterranean diet for a couple of week would work. :) good luck xx

    • Dairy is hard David, I won’t lie. Maybe you can get yourself to try for a one month commitment. It is usually casein that people are fighting, so avoid the lactose free substitutions. But most people can have butter, whipping cream (from the carton), and cream cheese, because these items are just fat. There are some great coconut ice creams on the market. Coconut Bliss chocolate is great!
      Good Luck,
      Just think, 1 month and then you would know if it is right for you or not.

  4. Before I eliminated gluten from my diet:
    Migraines
    Thick mucus/ constantly blowing nose & clearing throat
    Diarrhea
    Horrible PMS Cramps
    Moodiness
    Eczema on face
    Stomach Pain
    No Energy
    Muscle & Joint Pain
    High Blood Pressure

    Most of these issues have gone away since I have been gluten free for over a year. Still struggling with the PMS Cramps, but they are not as bad as they were.

    Thank you so much for compiling a list- I will definitely help you get the word out!

    • Horrible crampy periods are signs of PCOS (poly cyctic ovary syndrome). It is actually this diagnosis & a VERY wise infirtility doc as my “regular” GYN, that saved my life.
      Migaines
      Depression
      Chronic fatigue
      Chronic weight that wouldn’t come off
      Severe illness when dieting & gain/bloat (especially typical whole wheat grain types)
      Boarderline low thyroid (too normal for MD to address)
      Painful crampy periods
      Bloat/foul gas
      Almost non- exsistant D level
      Electrolyte imbalance
      Craving carbs/sweets
      Not all of these are directly attributable to celiac, some are accessory diseases like insulin resistance, PCOS, candida, & hashimotos

  5. Glad to see you collecting symptoms, because so many think that gluten couldn’t be the culprit if the symptoms aren’t the classic ones.
    For me, at 28, I was exhausted. I felt OLD. Been diagnosed with IBS for 5-6 years by then, but a blood panel for celiac came back negative (Dad has it, so I was the one that requested the test. Didn’t know to request a biopsy at the time). Dealt with that my whole life, but it steadily worsened, and at 28, I had chronic constipation alternating with bouts of diarrhea, bloating, smelly gas, GERD that Prilosec wouldn’t touch, I started to catch every little thing (and I’ve never been “sickly”), ulcers in my mouth, swelling feet and hands, and at times, tingling fingers. Oh and I’d been diagnosed with adult ADD at about 23 and was on meds for a while. Finally went gluten-free on a 90-day trial basis in 2009, and slowly saw relief (I tested at 90 days and immediately realized gluten WAS the culprit!), but when glutened, I get the worst brain fog. I slur my words like I’m drunk. Then nausea, bloating, all sorts of digestive awesomeness, heartburn, and I don’t fully recover for weeks. Now that it’s been 3 1/2 years, I’m finally feeling mostly better. I still have a very sensitive digestive system, but it’s manageable. I’m so glad to have gone gluten-free. I feel younger and am healthier now than I have been in years.

  6. I am very lucky to have unsightly auto-immune blistering appear in my hairline and on my forehead. They itch as well. I also itch in other bizzare places before the blistering appears. I of course have all the other symptoms people are listing here as well.

    • For me , I got very itchy over all my skin. Had sores in my nose as well. Brain fog, I couldn’t remember things. The Dr couldn’t find out what was wrong after some tests were done for other diseases. I started realizing that when I cut out wheat I felt better and slowly the itchy skin got less. I found dairy, especially cheese was worse than even the gluten. I believe I have an intolerance to these foods. If I stay without for a month then the symptoms are almost gone, but if I eat some of these foods I start getting more itchy and bloated.

    • The U of C (my alma mater!) celiac disease center has a list, too, at http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf.

      Though I appreciate the official lists, when I was going through the diagnosis process I was very much drawn to blogs like this one and I think it’s helpful to people who are newly diagnosed or not yet diagnosed to have faces and names to attach to the symptom lists. Helps make it seem more “real”/relatable…

      I won’t list any of my many “issues” because none of them have gone away yet, so only time will tell if they really are celiac-related, for me.

      • The U of C links to a list that is a bit shorter than the one Kristina linked to, but it is the same one—it is just adapted from Cleo J. Libonati’s book
        Recognizing Celiac Disease. (fantastic resource for celiac, BTW)

        I only know because we often link to it on celiac.com for people wondering about their symptoms….and sadly, I know that link by heart now.

        I highly recommend that book, along with Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. Excellent resource.

  7. My symptoms were (I would guess) completely atypical from the Classic signs… because I had no intestinal disruption. In my case, the symptoms piled on gradually over the course of years. I mysteriously developed Erythema Nodosum, which is an auto-immune disease affecting the lower legs. Asthma, which began as minor, and over the years, it became debilitating to the point that I couldn’t be around people for fear of something triggering it… and my voice was gone more often that I had a voice at all. My hormones were all over the map. I had to take supplements for progesterone, testosterone, adrenal function, DHEA, and thyroid. I had to take STRONG medicine for acid reflux, which was futile because it didn’t help. Hands, lower legs and feet all swelled so that my shoes didn’t fit. I had a pooling of insulin in my blood, so I had to begin treating insulin resistance with medication. “Something” undefinable attacked my gallbladder and even though it looked normal on sonogram and in the function test, it was diseased and had to be removed. My stomach stayed inflamed and protruding ALL the time. My mood was almost constant PMS, but I later found that this was really Classic Gluten Rage.

    Within a month of being gluten-free (which I tried on a whim… no doctor EVER diagnosed it for me… until afterward, when they tried to retroactively claim that they had suspected it)… ANYWAY… a month afterward, I was off my asthma medicine entirely (!!!), and the only medicines I take now (out of the 19 medicines I used to take, daily) are for thyroid, panic attacks (which are inherited for me), insulin resistance and acid reflux. THAT saved me 100′s of dollars a month!! And gave me my life back. There is no tether around my neck…. or fear of a shortened life expectancy. I can enjoy my kids, and go back to work full-time. Living my life, and LOVING IT!!

  8. My 6 yr old son was recently diagnosed and these were the symptoms he had for 1-2 yrs before diagnosis:

    no weight gain
    chronic constipation
    uncontrollable anger
    large belly, thin arms and legs

    A month or two before diagnosis he started also having:

    diarrhea
    fatigue
    skin was pale

    Since going gluten free he has put on 10 lbs (8 in the first month) and has grown close to an inch. He is a different child – lots of energy, happy. We went from having a small angry child to a normal sized (but seems huge to us in comparison), strong, laid back kid. It has been wonderful.

  9. Many of the symptoms above, but I’d also add a specific point about other auto-immune disorders. I have psoriasis, and an alert opthalmologist picked up the relationship between the iritis he had just diagnosed and the potential for more auto-immune disorders including coeliac disease. So if you know you have one form of auto-immune disease and have gut or other problems, do ask your doctor if there is a connection. I’m now more than 6 months on a gluten and lactose free diet and I feel SO much better.

  10. Low Vitamin D, Anemia, mood swings, hair loss, DH blistering rash, migraines, joint and muscle aches and pains, muscle cramps, unexplainable vertigo, irritability, fog brain, burning sensations in limbs, fatigue, weight issues, thyroid issues, stomach pain, vomiting, bloating, diarrhea, constipation, chronic infections, cold sores, tooth enamel wear, high cholesterol, and trouble with vision and distancing. Well those were all of my symptoms before removing gluten and during the process of a diagnosis of Celiac Disease.

  11. When it first began, I was having an upset stomach every time I ate and felt sick until I was so hungry that I had hunger pains. I was also constipated and had restless leg syndrome. After going to the doctor, they told me I had IBS and needed to take a fiber supplement. It wasn’t helping, so I went to a GI doctor who seemed to do every test under the sun. They basically said nothing was wrong with me, keep taking the fiber, and it will get better. About six years later I began having extreme shoulder and neck pain. I went to tons of doctors and had tons of tests – all of them telling me there was nothing wrong with me. Finally found my way to a doctor that did some blood work and found that I was deficient in many vitamins and nutrients. Did some more blood work and the gluten showed up. So 8 years after seeing the GI doctor, I finally got a diagnosis.

    • Did your RLS ever resolve? I had it as a kid, and it never went away. Celiac is terrible, but the RLS before medication-I know it won’t kill me, but I wish it would is how I thought about it. Between the two, its a wonder I didn’t shoot myself.

  12. I have the distinct pleasure of fainting when I’ve been glutened. If the gluten doesn’t get out of my body quickly enough via explosive dire rear or vomiting, my body will just pass out. Such fun to wake up bruised and battered from hitting the vanity and tub on the way down. I rarely eat out because the risks from lazy food handling just aren’t worth the consequences.

    • My son would also faint. Happened many times. Started in kindergarten. He never knew when it would happen. It scared him and started giving him severe anxiety. He was checked out by Boston’s Children Hospital for his heart, lungs and brain. Nothing was ever found. His other major symptom was difficulty breathing. He also had yellowed teeth, very skinny, and TONS of ear wax. One day he told me he was very hungry and asked me to make him waffles. I made him homemade waffles and he started devouring them, 3/4 of the way through, he put down his fork and his breathing problems started. It was the first time I had ever seen such a direct correlation. I just looked at him and knew that what he was eating was making him sick.

      The internet was a godsend. I found more information from everyday people describing their symptoms and trials than medical sites. So, Thank You! to all who post and the sites that provide a place to post.

      My son is now symptom free. I am hoping he will gain some weight. He is also going back to school (I ended up homeschooling him because he was so stressed at his condition).

  13. I had a wrong diagnosis for 14 years, followed by several more. S glad that that isn’t the case now..but it was such a long and painful journey.
    It started with the misdiagnosis of arthritis in my knees, hips, and rib cage at age 17. I walked with a cane, was deemed handicapped. I couldn’t gain weight, my immune system was called “compromised”, anemic, severe eczema on arms and legs, diagnosis of fibromyalgia, PCOS, diagnosed infertile, and severe dental problems. It wasn’t until after I finally got pregnant and then had my son that I found out what was really wrong. My son was born addicted to the meds (narcotics) that the doctors had me on thru my pregnancy to manage pain, and I was devastated that my son had to pay for what the doctors had gotten wrong for all those years. I finally found a doctor that listened to me and didn’t accept what the previous doctors said.
    As hard as it has been, I’m so glad that I finally know what is wrong. I’m now pregnant with twins (after two bouts of cervical cancer–don’t think that I can chalk that up to gluten, but who knows), and feel so much better this time!

  14. My daughter was 4 when she was diagnosed with celiac disease. Her symptoms were: extreme tiredness, she was so tired all she could do or wanted to do was lay around and watch tv. She couldn’t eve color, she said her arms were too tired. She was hungry all day long. She didn’t eat overly large amounts but constantly wanted to eat. She had pale skin, dark eye circles. She was always tall, normal weight and growing well. She got very moody and whiny and irritable at least once a day, more than my other daughter ever did. She said her legs hurt often. She was constantly constipated! For as far back as I can remember. She also had really itchy skin, mainly on her back.

    She never said her tummy hurt and she never had diarrhea.

  15. My symptoms are a rise in blood pressure, sinus pressure and pain as well as ear pain and ringing, flucuating hearing loss and vertigo. I also get very fatigued, brain fog, sore joints, acid reflux and bloated belly!! I am interested to hear (ha-ha) if any one else has experienced the hearing loss and inner ear issues that I have had. Thank you for putting this together & sharing Gluten Dude

    • I’ve had a chronic inner ear infection & vertigo for 5 years. Drugs never helped. Olive oil in the ear canal actually was only thing that helps when it gets really bad or vertigo sets in.

      • Wow… I’ve had hearing loss and constantly have problems with ear infections, vertigo and tinnitus. But until I read your comment I never even thought to contribute it to celiac!!

        • You are probably allergic to dairy. When I went dairy free my ear infection cleared up completely. See my other 2 posts.

      • Go dairy free! It cleared up my ear infection that I had for almost a year. Drink almond milk instead & eat fruit sorbet instead of ice cream.60% of Americans are allergic to milk and many times it goes along with wheat sensitivity.

    • I also have a gluten sensitivity. When I went off of dairy (milk, yogurt, cheese, ice cream, etc) the ear pain and extra ear wax I had experienced for about a year went away in about 4 to 5 days. If I forget and eat a piece of cheese to this day, my ears let me know. Stop all dairy and I bet your ear problems will clear. I continue to eat eggs because they are not from cows so I don’t consider them dairy although many are allergic to eggs. I would be interested to know if this helps you.

  16. Many of my symptoms I’ve had since I was a teenager. Mouth ulcers, chronic sinus issues and asthma, and IBS issues I thought were normal because my mom is the same way (she tested negative for celiac after my diagnosis). As I got older (I just turned 41) I had anemia, low vitamin D, melanoma (caught early thank goodness), rumbly bowels, gassy, bloated stomach, feeling of bruising in my bowels (at least that’s what it felt like…my lower stomach area just hurt all the time), ALWAYS HUNGRY, swings between constipation and diarrhea, joint pain, and extreme fatigue. 6 months before my diagnosis I was going to see my doctor to have her put me on an antidepressant, because I just wanted to lay in bed ALL THE TIME. And then, the grand finale, I started breaking bones. I had a stress fracture of my left medial tibial plateau, with subsequent diagnosis of osteopenia and celiac. It’s been almost a year and I do feel so much better. Those bowel issues I thought “normal for me” are mostly gone, I’m not as fatigued as I was a year ago. I’m still breaking bones so my osteopenia is not resolved, but I expect I’ll get there.

  17. Before diagnosis (over 20 years ago): foggy thinking, burning sensations in bones/joints, heavy fatigue, headaches, increasing weight loss (looked skeletal), thyroid issues, stomach pain, vomiting, bloating, diarrhea, asthma, itchy skin/crusty skin, gum disease, fragile nails/split nails, insomnia, depression, belching, farting and dark circles around eyes.

    After: took years for most symptoms to improve as I learned more about what processed food contained gluten (although still ate a lot of processed food, just the gluten-free versions). Recently, have had great improvement in all symptoms above by cutting out processed sugar, dairy, most grains and eating whole (actual) food, plus a few lightly processed items like almond milk.

    I exercised through this all but notice I am stronger (walk faster/up steeper hills and lift heavier weights) since changing to whole foods.

  18. I think the most important symptom to stress is PAIN. It isn’t ” pain ” in the sense of the word that most people understand. I also have other painful, chronic health issues and before Celiac Disease I thought my suffering was so bad that I couldn’t take it. Well, the pain from Celiac Disease makes my other illnesses look like a joke. There is no pain like this, but my reaction to the pain is the same reaction I saw when my husband collapsed to the ground and had to be rushed to the hospital with a kidney stone. It can be compared to what I see when someone is giving birth. I black out from the pain. It’s more intense then any words can describe.
    Besides that, after being glutened I have a violent reaction to any food for 1-3 wks afterward.
    There’s nausea, gas, bloating, pain, soreness, constipation, mental confusion, irritability, extreme fatigue, weakness.
    It has also caused me to be lactose intolerant.
    On another note, not a symptom, but a consequence, complete isolation not only because there’s gluten everywhere and I often get contaminated when I’m outside of my own home even if I constantly wash my hands with my own gluten free hand sanitizer because I don’t trust soaps unless I buy them myself and wear gloves most of the time which has been seeming to keep me much safer ( haven’t been glutened since I’ve been doing that ). The isolation also comes from the extreme and utter ignorance of nearly everyone around me. I’ve lost a lot of friends because I can no longer stomach their offensive comments, most from my friends who are nurses.

  19. Oh goodness, this could take a while…

    Fatigue
    Headaches
    Neuropathy
    Ataxia
    Slurred speech
    Bloating
    Bladder pain
    Anxiety
    Panic attacks
    Depression
    Joint pain
    Hot flashes
    Night sweats
    Insomnia
    “Scalp fire”
    Swollen fingers
    Acne
    Brain fog
    Trouble focusing my eyes
    Forgetfulness
    Short temper

    I’m sure there’s more…

    • Night sweats! Have them every night. Haven’t been able to get an explanation for them from my doc. Haven’t had a diagnosis of gluten intolerance but will get a blood test when I am “feeling better”‘ whenever that will be! Have had symptoms of gluten intolerance so I have been diligent in avoiding it, but I can’t shake the cold? Flu? That I have had all summer!

      • HI Georgia,
        My son was undiagnosed as gluten intolerant for 13 years. During that entire time he sweated profusely at night (in addition to standard symptoms); sometimes his skin was also covered in large red circles. As a result, he slept very badly. He also had heavy colds at least once every two months. Now he hasn’t eaten gluten for 5 years, he’s no longer hot at night and rarely gets colds. I guess the red circles were because his blood was furiously trying to expel whatever was in it that it didn’t like. (He’s never tested for coeliac because he’s not prepared to eat gluten and get ill, just to prove it’s a problem.) It can take a couple of years to fully recover. Hope it works out for you.

  20. Haven’t been diagnosed but since I went off gluten i feel a kagillion times better.
    Panic attacks- got referred to a psychiatrist.
    Depression- but no reason to be depressed.
    Constipation and diarrhea- off and on for both.
    Weird rashes that come and go as they please.
    Extreme fatigue- and sleeping over 12 hours a night.
    Mouth ulcers- I have 6 in my mouth at one time.
    Ear infections- a lot.
    Horrible food allergies.
    Weird stomach pain every once in a while- got my appendix taken out for it.
    In and out of doctors every year- constantly sick.
    Knee problems that won’t subside.
    ADD- that has gotten better with no gluten.
    Short-ish- not super short, but smaller than my family.

    Wow. That’s a lot to go through at only 18. I hope everyone else finds some relief. Everyone with celiac has helped me ALOT! So thank you :)

  21. Mine echo a lot of what’s already been posted.
    Before removing gluten (and dairy, sugar, soy): constant sinus infections, major excema, chronic fatigue, inconsitent bowels, brittle nails, dry hair, poor skin elasticity, constant allergies and all of the instand+lasting symptoms.

    Instant symptoms(many of these symptoms last an entire month, they are the fiest responders though after eating even a trace of gluten): nausea, heartburn, major belly bloat- flat abs to pot belly in minutes, canker sores, excema breakout, painful dandruff, frustration, shakes, sweats/chills

    Lasting symptoms (up to a month) Brain fog- unable to think clearly, no ability to concentrated, I lose my ability to think into the future/ plan head, time manageent goes out the window. Diarrhea- usually the day after being glutened and is accompanied by intense gut pain, cramps and sweats. Dizzyness/ blackouts when I try to stand, muscle cramps and aches- the sensation of a really tough workout… But with no workout, toothches, redness and flakey skin around eyes, anxiety, physical anger and agression, major fatigue, constantly feeling hungry

    There are probably more that I’m forgetting but I think that’s most of them.

  22. Blefore diagnosis: bloat and inconsistent digestion, severe insomnia and crushing fatigue. But the main one was respiratory — I coughed constantly for years. Almost ruined my marriage, I coughed all day and all night. Now if I get glutenef it’s instant phlegm and tickle … usually enough of a warning to stop. If I go too far, The Cough returns for a few hours, and then I’m wiped out for a day or two.

  23. Anemia
    Brain fog (that I only understood after it was gone)
    Horrible epigastic pain, nausea, sometimes vomiting
    “Gerd”
    Sinus infections & chronic strep
    Skin rashes
    Weight changes (too low, then crazy weight fluctuations after my dx)
    Feeling sick… Chills every night, fatigue, random unexplained fevers
    Anger/horrible outbursts/insane irritability
    Hypothyroid

    Now if I’m glutenated I get exhausted and brain fogged like I’m trashed drunk. I can’t focus or accomplish anything for one day up to a week. I’m like a zombie or I just sleep.

  24. Only additional thing that I haven’t already seen mentioned is hair loss. My hair feel out to the point I had bald spots. Gluten free for a year and a half and the bald spots are almost gone.

  25. It took 5 years for doctors to figure me out since I had no apparent intestinal issues. Mine all seemed unrelated and but doctors would say that they “think I have some kind of auto immune thing going on.”
    My list includes the following:
    scleritus
    mucsle tears/spasms
    bursitus
    tarsal tunnel
    vertigo/BPPV
    bells palsy/numbness in face
    weak/heavy legs
    irregular/racing heart
    loss of taste lasting about a month
    swollen bladder/cervix – 6 months that finally lead to seeing a GI doc for official biopsy diagnosis
    Hope others can use this list to find their answers!

  26. Mine echo a lot of what people already said
    -PCOS
    -infertility
    -endometrial cancer at a young age
    -diarrhea that would never end
    -abdominal cramping so bad I would stay home from work
    -IBS
    -diverticulitis
    -over weight with no ability to lose weight no matter what I did
    -low vitamin D
    -low vitamin B12
    -vertigo
    -balance issues
    -irregular heartbeat
    -acne
    -hormonal level swings

    All went away for the most part (except for the cancer, which I had a hysterectomy for) when I went gluten free.

    What I’m still having issues with:
    -abdominal cramping and pain in the morning
    -diarrhea on a regular basis (not every day, but at least a couple times per week)

  27. It’s like reading a checklist, yup, check, got that, been there… I still don’t have an official diagnosis but previous ones have ranged anywhere from beaver fever, stress, depression (I used to tell drs I’m not depressed I’m pissed off – chronically angry – apparently with the other symptoms like fatigue I’ve been on a number of anti depressants none of which helped – go figure) ibs (that’s when the fun started when I stated making myself eat whole wheat everything thinking cuz I was pooping I was getting better – meanwhile I gained nearly 100 lbs and was always always hungry – like it’s actually weird for me to feel full now, and I do have normal appetite when no gluten is in my system) I always test normal, iron always a bit low or very low (low if I’m supplementing very low if not – almost needed a blood transfusion after my hysterectomy – which I opted for because even though my hormones tested in the normal range – I had horrible painful crazy PMS and bleeding all the time – no fun – but after the surgery o never recovered ( I used vega shakes, hemp seeds, chia, and iron sups to avoid the transfusion cuz that seriously scared me I got my iron up to low/normal again)…but, oh here we go again(after the surgery) flipping stomach like I’m nervous but I’m not, panic attack feeling but not panicked, aching all over my whole body, dizzy, nauseous, headaches, migraines, fits of rage, hyper and tired at the same time, all the time. Meds don’t work on me, they often do the opposite of what they should or the side effects are so extreme any benefit is negated…I’ve had chronic stomach issues as long as I can remember, constipation mostly but recently diarrhea – I was afraid to eat when I was a teenager I kept saying food makes me sick – no I was in therapy for bulimia and anorexia and I was always angry… My mom feels so bad cuz after the ADHD meds never helped, this that and the other never helped I figured this out on my own – 37 years into my life and a few organs down, lots of heartaches – she said to me “I wish I knew, we just didn’t know these things back then” my 73 year old mama – I said “mom no one knew none of my symptoms are normal it’s ok” – but as a mom I know how much it hurts, all these issues and a simple (not easy but simple) dietary change is all I ever needed… Man that’s messed up… Lol seriously messed right up – gotta laugh cuz whew finally but ohhhhh man when I get glutened – it’s all bad, last time (a week or so ago) I was lucky enough to know what got me and it still didn’t help, I’m still drained over a week later but at last I am starting to feel this might be manageable. Gluten free expo in Calgary Alberta this weekend – I need all the help I can get!! But yeah no diagnosis here except my own…and when I read others like me it’s so amazing…. Stupid gluten…stupid delicious gluten I need AA for celiac’s hahahaha

    • Oh forgot I tested negative on the celiac blood test, never got the biopsy done. But I know 100% I know – well maybe 99% but that one percent gets smaller every time I’m like “why do I feel like this” oh right … I wasn’t careful enough or just careless (hate to say but it happens that doubt and I think maybe I’m wrong and…. Yup I need GA lol gluten anonymous lol for real! )

  28. Neuropathy so bad I thought I would end up in a wheelchair.
    Excruciating bone/joint pain
    Suicidal depression and panic attacks
    Weight loss (40 pounds in <5months) but no typical GI symptomsexcept nausea, prompting abolve listed weight loss
    Low B12, low iron, weird liver values
    High blood pressure (that was my first clue that something was wrong because it had always been normal. December 2009 it was 110/60 and Feb 2010 it was 160/90 or higher)

  29. I had such vague symptoms. Joint pain, brain fog, ataxia, bloating, gas, extreme constipation, (I would take large amounts of laxatives to get my bowels to move). I also had fatigue not relieved by rest. I also gained weight.

  30. It has been so long since I’ve been diagnosed, and I’ve improved so much since then, it is hard to remember some of it. I can say these for sure (because I still occasionally deal with just a few of these):

    chronic fatigue, chronic hives & skin rashes, bad breath, anemia, weight loss (I miss that one!), hair loss, “irritable bowel” syndrome, forgetfulness, extremely dry skin, unexplained chills and fever, repeated throat infections (caused by the GERD that gluten caused), etc, etc, etc.

    Thankfully, almost all of these symptoms have disappeared over time. Going gluten-free helped A LOT, but I’ve also had to cut out many other foods. I pretty much follow a “whole30″ protocol 365 days of the year except I don’t eat almonds, tomatoes or a few other foods I have IgE allergies to – probably caused by years and years of gut damage pre-diagnosis. Eating this way has brought a lot of healing to my body that I did not get from being simply gluten-free. (Next poll, Gluten Dude… I’d love to know who didn’t get better by only going gluten-free, and what others had to do diet-wise for further healing. :)

  31. Before I went gluten-free:
    -Anemia (since I was 18 which eventually led to excessive bruising in the last few months before I went gluten-free)
    -Depression/Anxiety
    -Bloating (I looked about 4 months pregnant)
    -Nausea
    -Severe stabbing pain in my abdomen
    -Constipation
    -Fatigue

    After I went gluten-free:
    -Migraines (I discovered these disappeared when I went to gluten-free make-up and lotions)
    -Weight loss (whenever I get glutened, even a little, I automatically drop 5-10 pounds due to diarrhea) I also lose weight extremely easily when I have any illness (the flu, a cold, strep throat anything)

  32. Before diagnosis:
    - Migraines – bad ones with nausea and vomiting 3-5 times a month, less bad ones 7-10 times a month
    - Irritability, moodiness, depression, irrational anger – like normal to enraged for no particular reason in the space of only a few minutes – or crying because I saw something sad on t.v.
    - Fatigue/exhaustion – always, always exhausted, even when getting 8+ hours of sleep a night
    - Sleep problems – falling asleep was fine, but often unable to sleep through the night
    - Thinning hair
    - Bad breath

    In addition to the above, after diagnosis I now experience some more things when glutened:
    - Diarrhea and/or constipation – usually I only get D if I’ve had a lot of contamination
    - Painful stomach cramping & bad, foul-smelling gas
    - Bloating (seems unrelated to the gas) every time i eat anything for 2-3 weeks after getting glutened. Looks like I’m pregnant – the last time it happened my husband and I measured it with a tape measure, and my waste had gone from 26 inches to 35 inches in less than 10 minutes – and it’s been bigger. I’m fairly thin but sometimes it gets bad enough I can’t see my feet.

    I think that’s it…

    • Not it – I forgot, I also get an itchy skin rash on my rear end, which comes about a week after gluten exposure and goes away after 3-5 days. Never had it tested to see if it’s DH or not – and never had it before going gluten free.

  33. Here’s what my son has gone through, he has more of the classic symptoms (diagnosis at age 5)
    Prediagnosis
    Irritability (ever since he was born, many thought he had colic as a baby)
    Never wanting to be put down, always carried
    Night terrors
    Nightmares
    Painful legs
    ALWAYS hungry, could never fill him up
    Constant complaint of stomach aches
    Diarrhea
    Foul smelling stools
    Occasional vomiting
    Separation anxiety
    Speech delay (not sure if this is related, but due to lack of nutrition I’m convinced that he had some developmental delays)
    Pale skin
    Short for his age
    Distended abdomen
    Didn’t like eating bread (it was apparent after the dx why that was so, his body was telling him not to eat it, I should have listened to him)

    Post diagnosis
    Anxiety (big time, we are working on getting a grip on it)
    Trying catch up in school, making great strides though

    • Thankyou for posting your sons symptoms.My daughter (7) has been having bad stomach cramps,nausea,diarrea and constipation,shaking on one occasion.Every body says she’s putting it on and she has seperation anxiety.I keep telling everybody that she has seperation anxiety because of the pain.Its really starting to effect our lives and mothers instinct tells me its more than just seperation anxiety.To see your boy had this as a symptom has put me at ease somewhat that I am on the right track.Thankyou

  34. Stomach pain that never stopped, explosive diarrhea and not so often but explosive vomiting as well, fatigue, blurry eyes, loss of hair, depression, anxiety attacks, brain fog, problems having ideas in focus and on came different sentences or problems to find the correct words.

  35. oh terrible heartrburn, reflux and of course low VB12.
    After going gluten free: after almost 4 years of taking suplements of VB12 levels are almost normal, reflux and hertburn stopped, I am a happier person. I can think straight.

  36. Undiagnosed for 28+ years

    Debilitating fatigue, slept 20 hrs a day (still felt unrested)
    Migraines (w/ Vision Loss & Vomiting)
    Neuropathy in left leg/foot
    Severe Joint Pain
    Muscle Spasms
    Constant Low-grade Fever
    Hives/Mouth Ulcers
    100 lb. Weight Gain
    Low vitamin D, B12, Iron (Anemia)
    Chronic Constipation
    Vertigo
    Brain Fog/Forgetfulness
    Chronic UTIs
    PMS/Irritability
    Constant infections Flus, Colds,Viruses
    Miscarriages
    High Cholesterol
    Gerd

    Tested/Dx with Chronic Fatigue Syndrome/”Chronic Mono”/Shingles/Fibromyalgia/Lupus/MS

    Celiac diagnosis June 2012, have been gluten-free since August 2012, not feeling much better, still have issues with constant crushing fatigue. Have been soy free since January 2013, (was noticing migraines connected to soy)
    Have not eaten ANY food outside my own home since August, everything home-cooked from whole ORGANIC foods.
    My “gluten numbers” were off the charts to start with and have come down considerably since, but will they ever be ” normal”??? Will I ever feel healthy And lose the weight??

    • Hi Joyce,

      My symptoms were almost identical. I was born with spinal issues that resulted in chiro from the age of 15 months. Stomach pains all my life.. Was always the tallest until puberty hit, when growth stopped and pains got worse.
      Diagnosed with malabsorption, IBS, Endometriosis..
      Even though I was very active all my life, I was always fatigued and every month my menstruation was horrendous, resulting in extremely low iron, bleeding 3/4 weeks at a high rate etc.
      At 24 I was told I had glandular fever, even though I was symptomatic
      I couldn’t swallow bread, pasta’s etc (not good as a European with this being the staple of our diet!)..
      In and out of doctors and hospital with a distended colon, bowel issues and lots of pain… And Osteo-arthritis
      At 32 I collapsed at work and was rushed to hospital with polyps in my gall bladder, on some internal organs etc… Gall bladder removed and my gastro didn’t check for Coeliac… He didn’t know why I had all these issues. He said that I didn’t fit into the ’4 F’s’ typically found with my symptoms… That is ‘forty, fat, flatulant and female.’
      The symptoms started back a couple of months later and at 36 I ruptured my colon. A CT scan, MRI and blood test confirmed I had the coeliac ‘indicator AND suspected Crohns. Within 2 weeks I had a colonoscopy to fix the colon and check for Crohns and an endoscopy to check the bowel and take a biopsy to confirm coeliac disease, which is the only way to confirm Coeliac.
      Well…. Colitis, Crohns, Coeliac, hole in trachea, distended colon, damaged bowel and allergic to soy but not lactose was confirmed. I was put on steroids ‘short term’ to repair some damage and put on 36 kg.
      I got off the medication, went GF and starch free with great results!
      I have 3 monthly blood tests and annual endoscopes..
      I’m constantly fatigued, with swollen glands, permanent rash on my neck, mouth and tongue ulcers, swollen lymph nodes in my neck an underarm, very vitamin deficient (Vitamin D, B12, Calcium, iron etc etc).
      I am growing intolerant or allergic to all sorts of things.. To the point that I hate visiting my GP as itbfeelsmlike I hear something new all the time..
      My Gastro and GP both say this is normal (not happy Jan!)
      I catch everything going!
      Just had skin cancers cut out and a triple spinal fusion and 2 disc replacement just founder 2 years ago..
      Sound like I should be shot huh??
      I’m GF (mostly), take a myriad of supplements, Somac and cholesterol meds daily, have gotten my deficiencies to lower side of normal and am getting back into sports as I refuse to let Crohns, Coeliac disease or a lower spine full of titanium dictate my life. I just turned 41, but am as active as people half my age. I work 50 hours or so a week and am at uni full time with 2 teenagers and a husband who is like a third child ;-) .
      Sometimes I feel defeatist as it’s one thing after another at the docs and yes, my kids and husband hate my mood swings and chronic fatigue but I’m starting to get on top of things. I’ve found some mouth ulcer tablets that I take when the tongue and mouth ulcers get too bad… I eat Greek yoghurt alot as it has lots of probiotics and lactase protein but not lactose.
      Almost everywhere I go accommodates gluten free now so I don’t feel as different to others as I used to.
      All I can say now is thank god I was finally diagnosed, as I felt like a hypochondriac! I can start to pick up symptoms early and know when I’m starting to grow intolerant to foods etc.

      Thank you to everyone who has posted. I don’t feel so alone now!

      My gastro says that whilst only 10% of society is coeliac, more than 80% (in his opinion) are gluten intolerant. The Paleo diet seems best suited to accommodate the diet. It’s bloody hard on a hot day however, to avoid having a lovely cold Corona with lime though!

      This site has helped me and I hope others are getting the same level of support as I have just from reading everyone’s posts.

  37. Before I found out I had CD:
    -Overweight
    -Acne
    -Horrible joint pain
    -Horrible gas and bloating
    -nausea
    -bad constipation
    -esophageal spasms
    -Mental fog
    -depression
    -insomnia

    Pretty much all have subsided since going GF over 2 years ago. Usually some symptoms return if I get glutened somehow.

  38. I was usually outdoor immediately after every meal as a small child. Until I was probably 8 or 9 I would go outside to play after a meal and promptly soil myself. It wasn’t that I didn’t know I had to go, it was that it just happened that fast. I also wet the bed far beyond the age at which most kids stop. I was a moody child, and had the worst colic as a baby which started at about 2 weeks. Right when the doctor told my mom I wasn’t getting enough to eat and to start giving me oatmeal at bedtime. Never did have the failure to thrive issue though, so obviously I didn’t have a medical issue. (Insert eyeroll here.)

    As a young teen most of my symptoms went away, except that no matter how well I took care of my teeth I was getting cavities. I developed Raynaud’s when I hit puberty. I realize now that the only reason I was able to have two relatively healthy pregnancies and babies is because it happened when I was 16 and 18.

    By the time I was in my early 20′s my teeth were a train wreck. I was tired all of the time. I was depressed. (I don’t know if this is a symptom or because I was married to an asshat.) I was overweight and no matter what I did I could not lose it.

    It was around the time I hit 30 that my symptoms hit overdrive. I went from pretty tired all the time to sleeping 16 hours a day. Those were my good days. I hurt everywhere, all of the time. When I was awake I barely had the energy to feed and bathe myself. I had incredible brain fog, it felt like I was living just out of sync with reality. I had neuropathy in my arms and legs. I’ve developed a few fun AI diseases. My nails aren’t healthy any more. My hair is falling out. I developed acne suddenly for the first time in my life. (I miraculously survived being a teen without it.) I had to pee all the time and was eventually mildly incontinent. The two go together awesomely.

    In the end, my opinion is and it should be standard for every doctor in the US. If you don’t feel well overall, and there isn’t a specific reason, you should be tested for celiac. Anything can be a symptom, and sometimes there are none at all.

    • “In the end, my opinion is and it should be standard for every doctor in the US. If you don’t feel well overall, and there isn’t a specific reason, you should be tested for celiac.”

      Amen, little sister! ;)

      However, there is no $$$$ to be made this way.
      Symptom-treating for years keeps people in waiting rooms and on drugs.
      Diagnose celiac early and you’ve got no patients to see. They are all healthy and living their lives.

      I know; I’m jaded.

      In Italy, they screen babes early on. They get it.

  39. 18 months of:
    Knee lock
    Bloating
    Weight gain (36lbs)
    Diarrhea
    Vomiting
    High C-Reactive Protein levels
    Fluctuating TSH, T3, T4 levels (related to hypothyroidism)
    Extremely low Vitamin B12 levels {needed injections every 2 weeks for over 14months; since body wouldn’t absorb any vitamins from tablets}
    Anemic
    Low Ferritin
    Low Calcium
    Irregular Anti ANA levels{fluctuated between positive and negative}
    Irritability
    Brain Fog (I wish I knew that is what it was called)
    Forgetfullness [couldn't even remember what day it was, where I was going or why?!]
    Breathlessness
    Fatigue
    Sleepy all the time (even after 8hrs of sound sleep)

    Post Diagnosis:
    Took over 14-16months to figure out what works and what doesn’t for me. For e.g. l am now lactose intolerant, can’t have more than 1-2 cups of rice in a week, can’t tolerate Glutino products – AT ALL, and have to restrict my coffee/tea intake to 1 cup a day.

  40. Such a great idea Dude! I realize lists have been compiled before but I’d be interested to see, in the end, how many people list pain as a common symptom (seems like a lot so far!) since that was the primary thing that kept me going to doctors for 11ish years and never once did anyone think to test for Celiac. In the end, when I was basically tested on a lark, the doc was amazed to find that my list of “nontraditional” symptoms were in fact Celiac. Here’s my not-so-nontraditional-after-all list:

    Before diagnosis:
    EXTREME joint and muscle pain
    Extreme fatigue
    Tooth enamel erosion (the dentist asked me at a 6 month check up if I had taken to drinking battery acid)
    Brain fog
    Chronic constipation unchanged by diet or fiber consumption
    Vitamin deficiencies including D, Bs
    Irregular/skipped menses
    Brain fog
    Mood swings
    Extreme irritability
    Chronic sinus infections
    Disproportionately large belly
    Halo nevus
    Hair loss
    Pale, yellowed complexion

    Since diagnosis, a glutening means:
    Within 24 hours, so I know the party’s started –>
    Impaired hearing (ringing in the ears)
    Headache
    Sore throat
    24 hours – 6 weeks of pure enjoyment –>
    Diarrhea
    Dermatitis
    Extreme fatigue
    Brain fog

  41. Except for extreme irritable bowel syndrome, I didn’t realize I had symptoms. I was overweight (not extremely obese), and no matter what my complaint, the prescription seemed to be “diet and exercise.” I was so fatigued that I didn’t feel like walking across the room, much less exercising. There was a cure for that too. “Exercise will make you better,” the doctors said. I didn’t know I had brainfog. If you have always had something, you don’t know that it isn’t right. I became worse and worse until I could barely work. I came home and practically went right to bed. I couldn’t get rested. I ate healthy, and I drank lots of water. I did all the right things – including whole wheat bread instead of white. Isn’t that a joke! My glucose level became slightly elevated – “pre” diabetes they called it. Again, diet and exercise was the prescription, only now they blamed all my symptoms on sugar. I became malnurished. I had a torn ligament in my shoulder – just woke up with it. I had a skin cancer. I didn’t look malnurished because I was fat. However, my body was getting no nurishment. Hello? I was given 4 pints of iron. The doctor was shocked when I told him I didn’t feel better. They did the endoscopy expecting to find a bleeding ulcer or cancer. Oh, I also had a stillbirth and 2 miscarriages along the way and serious gum recession-probably caused by malnutrition. In hindsight, the unexplained is answered. Now that I’m gluten-free, I feel wonderful. I have energy. I no longer eat and go directly to the bathroom. I think clearly. Diabetes is still trying to catch me, but otherwise, I’m a different person as far as the way I feel as long as I eat correctly. I’m so particular about what goes in my mouth and on my body that I have only had one reaction since my diagnosis about 6 years ago. Oh, I almost forgot, I haven’t had dandruff or a yeast infection for several years either. No skin breakouts. Stronger nails. Check your meds. Even if a medication does not contain gluten, the capsule (container) might. Or, generic drugs might be gluten free this time, but not next time (different manufacturers of different ingredients from batches to batch ), and the pharmacist might have filled a gluten-containing prescription on the same tray just before filling yours. Even coloring in some foods can be the culprit. I found a nutritionist much more helpful than the dietitian that I was referred to. Unless you can find a dietitian that has celiac disease, find a good nutritionist.

  42. Before I found out that I was non-celiac gluten intolerant, I had:

    - wrist pain
    - bloating
    - weight gain
    - headaches
    - constipation
    - fatigue
    - rash on the hands, face, knees and tummy
    - brain fog
    - depression
    - anxiety
    - high blood pressure (which is beyond strange for me, I’ve always had low blood pressure)
    - racing heart (heart beat higher than normal)
    - severe asthma episodes (usually a couple of hours after eating a gluten filled meal, most were so bad that it landed me in the ER).

    The doctors couldn’t figure out what was wrong with me. They tested me for various stuff (all came back negative) and sent me to various specialists… none of which were able to help.

    Finally, I found an article online that talked about a possible link between severe asthma (and my other symptoms) and gluten intolerance. So, I gave up gluten to see if it would help.

    So far, I’ve been gluten free for 5 months now and I’ve never felt better! All of the symptoms listed above are gone. Best part is, I’m starting to work off of my asthma medication. =)

  43. Basically I just fell down. From doing everything to doing nothing. I wasnt diagnosed for ages too. Included: depression, panic attacks, throwing up everyday, dizziness, unbearable tummy pains, hair falling out, broken lips, too tired to get out of bed, crying all the time, bad skin, nightmares etc just stuff I never want to go through again. After being gf for about 7 month I’m much better although still not well and I am now just very constipated and have to take iron and b vitimins. Plus thyroine. Sucks but hoping it gets better with time. I want to go back to doing what normal 18 year olds do :( (

    • Try going dairy free…you may be allergic to milk, cheese and ice cream. Many who are allergic to gluten are also allergic to dairy. Eat lots of vegetables, especially kale, spinach, broccoli, brussel sprouts and cauliflower. Have a fresh salad everyday with dark green leafy vegetables. Eat fresh nuts and seeds everyday and fresh fruit everyday also. Give up all processed food & sugar. Your constipation should go away and you should start feeling better. Only put nutritious foods in your mouth!

  44. Here were my symptoms before I went off gluten:

    Bloating/gas
    Nausea
    Acid reflux
    Dizziness
    Low blood sugar
    Intense sugar cravings
    Constantly parched/urinating a lot**
    Fatigue
    Brain fog
    Anemia
    Restless Leg Syndrome/Unexplained aches
    Headaches

    The worst was when I was hungry, I would feel dizzy and nauseous because of the low blood sugar…but then after I ate I would feel nauseous and and bloaty and refluxy. Being hungry was painful and eating was painful! I’m so glad I figured out the problem!!

    **Everywhere I went, I was worried that there would be no water and/or no washroom!

    • This is me!!!!

      bloating
      diarrhea
      fatigue
      insomnia
      nausea (especially in the morn)
      anxiety
      silent reflux
      vitamin deficiencies
      abnormal liver enzymes
      episodes of unexplained vertigo
      night sweats
      muscle aches

  45. Gas
    Bloated
    Diarrhea
    Brain Fog
    Exhaustion
    Heavy Eyes
    Feeling of low self worth
    Headaches
    Irritability
    Pool Sleep Patterns

    Severe issues have caused me

    Depression
    Anxiety

  46. Anemia, extreme fatigue, migraines/headaches, stomach pain/cramping, gas, constipation, constant nausea, vivid nightmares. While I don’t know if some of them are directly related to CD, all of them have more or less disappeared since going gluten-free.

  47. I am not officially diagnosed with Celiac yet. Blood tests are positive, just waiting for results of biopsy of intestines. I have been silently stalking this blog for a few weeks cause 1. It Rocks and 2. Gluten Dudes dry sarcastic wit cracks me up.

    My symptoms:

    Unexplained Vertigo ( often very violent)
    Loose stools
    Fatigue
    Muscle weakness
    Numbness
    Tingling
    Muscle twitching
    Stiff and achy
    Vision issues ( extra floaters, can’t focus)
    Bloating
    Stomach aches
    Low blood sugar
    Irritability
    Lots of Cognitive issues
    Severe b12 deficiency

    I have been gluten free for 2 wks (I hope – it’s freaking hard, especially in small town Saskatchewan, where there is very little choice) and my Vertigo is gone and energy keeps increasing!

    Lisa

  48. ALL of the above and then some. That 300 symptom list? I had about 65 of them.

    ( most of you know my story by now, so I won’t list them all again and bore the crap out of everyone.) :)

    Suffice to say, it was 4 pages long when I printed out my life time symptom list for my new celiac-savvy GI doc and all he could say was “oh wow. this is just wrong. You’re like a celiac textbook for me….”

    The cool thing is watching them resolve. :)
    Still have more to go, but after 2 years, 4 months, much progress has been made and that keeps me going every single day.

    Stay the course, gang.

    Tough times don’t last. Tough people do..

  49. “Tough times don’t last. Tough people do”

    My mom bought me a book with that title. I think I was like 14 years old. She must have been to a future teller or something.

    • I do not know where I heard those lines before, but it stuck (somehow) in my gluten head and I wrote it in my journal.

      Classic :)

  50. This is a pretty long list of my symptoms/conditions. One of my doctors requested that I keep a thorough list, so that is why it is so comprehensive. We believe that I may have MS, as well (Need further testing). Some of my symptoms have cleared up once I went gluten free and started absorbing nutrients better. Some of the symptoms are more manageable or not nearly as noticeable. The more disabling ones are still rearing their ugly head, i.e., Chronic Fatigue, extreme weakness in limbs, and the Edema, to name a few. Along with the digestive symptoms, i.e., diarrhea, stomach aches, etc… My Dermatitis Herpetiformis is pretty well in check. I try to remind myself that the more my body heals, the more my symptoms/conditions will resolve.

    Dermatitis Herpetiformis

    Pallor; Vitiligo; skin rashes; hives; acne

    RLS

    Hormonal Imbalance; Uterine Fibroids; Menorrhagia; multiple miscarriages; PMDD; breast tenderness; night sweats; insomnia; bladder problems

    Heart palpitations; racing heart beat after ingesting gluten… accompanied by diarrhea

    Tinnitus

    Memory problems; inability to concentrate; nervousness; moodiness and irritability; anxiety; depression; personality and behavior changes; anxiety and panic attacks

    Chronic Fatigue; muscle aches, tenderness, stiffness, and weakness; general weakness in extremities; pain, stiffness or swelling in my joints; tremors; Sciatica; dragging of feet

    Hyperventilation

    Weight gain; bloating; Distention; Edema

    IBS; Stomach aches and cramping; nausea; heart burn; Acid Reflux; diarrhea (Explosive at times); constipation; extremely foul stools and gas; gas pains

    Vertigo and dizziness, sometimes accompanied by vomiting

    Hair loss and hair growth; brittle fingernails and hair; lines on my fingernails

    Hypothyroidism; temperature sensitivity (Both hot and cold); weight gain/unable to lose weight

    Gall Bladder disease; removed at 23 years old

    Adrenal Fatigue, chemical sensitivities, adult onset allergies…unable to tolerate synthetic fragrances/odors and some natural odors

    Numbness, tingling, crawling sensations, electric-shock sensations…abnormal sensations

    Blurred vision; loss of sight (temporary)

    Nutritional deficiencies; Malabsorption

  51. My main symptom was and still is vomiting. After every stomach test there is I was diagnosed first with an intussusception in the small intestine and then later with Celiac. My doctor has recently come to the conclusion that the Celiac did so much damage to my small intestine that it has caused a motility disorder and now the food doesn’t move through at a proper rate. As the day goes on food backs up and I vomit. I’ve tried different medications with limited success and now I just try to manage the situation with very small meals and protein shakes. The cause for the intussusception is still a mystery but it causes quite a bit of abdominal pain off and on. I also had anemia that required several iron infusions, many vitamin deficiencies and hair loss by the time I was diagnosed.

    • Kerri, did you lose weight or have any other symptoms? My son is 20 and refuses to get tested at the moment because he doesn’t have my symptoms. However, he does vomit in the a.m sometimes and wants to excuse it with he ate too much/wrong thing etc.

      • My main symptom was vomiting as well. I would vomit every morning as soon as I woke up and often after every meal. When it was really bad the year preceding my diagnosis I was sometimes vomiting up to 9x/d and had lost about 45 lbs.
        My other symptoms were diarrhea (with blood and mucous), abdominal pain, fatigue, low back pain, mouth ulcers, gum inflammation, eye problems, lack of tear production causing chronic dry eyes, irritability, fainting, etc. (I could go on and on)
        But the most debilitating symptom prompting medical evaluation was my vomiting.

  52. Before diagnosis – severe anemia since teen years (unexplained based on diet and periods – no one ever tried to find out why); brain fog ‘ditz’; bruises all over if someone breathed on my too hard. The only tummy/digestive problems I ever had was an upset tummy on the first day of school every year. Oh, and lots of gas.

    After diagnosis – diagnosed age 41 after a Dr FINALLY asked why he had to send me for an iron transfusion. After going gluten free:

    If I eat something with gluten (by accident, of course) – within half hour I feel extremely nauseated and start crying, ’cause I know what’s coming – after that, the next 8 or 9 hours are spent in the bathroom: vomiting, neurological symptoms (including pins and needles in my hands and feet, hands frequently get frozen in a ‘beak’ like position), brain fog, extreme fatigue and really clumsy for days afterward.

    If I get glutened by cross contamination – frequent diarrhea for at least two days, sometimes stomach cramps, brain fog ‘ditz’, clumsy.

    Always, no matter what I eat, but made worse by what I eat – restless leg syndrome, frequently exhausted during the day (i.e falling asleep on the tram or at work); wake up frequently during the night.

    After I was first diagnosed, it was very difficult for me to understand, as I didn’t have any of the ‘classic’ symptoms before I went gluten free, so I didn’t understand the need for ‘total’ gluten free. The longer I’ve been gluten free, the worse the symptoms are when I DO get glutened, so yeah, I know now.

    • Oh yeah, I forgot about depression. Severe depression since I was a teenager, diagnosed in my early 30s, on constant meds from then until about four years ago. Been gluten free for about seven years now.

      • So glad to hear of someone else with bruising-though sorry you had to deal with that. The doctors were literally dumbfounded about my bruises. It was like they spontaneously reproduced whenever they wanted-so strange. My skin was a rainbow of colors.

        • I had awful bruises too (that’s common from a Vitamin K or B-12 deficiency and in those of us with ataxia who bang into walls when we try to negotiate a doorway) and sometimes, doctors looked at the hubs with accusing eyes.

          If only one of them had thought “hey, this looks like a Vit K def”, they could have caught it sooner —in all of us .

  53. I struggled with memory issues, anemia, joint and muscle pain and fatigue. I also was diagnosed with interstitial cystitus 10 years before the celiac diagnosis and I know the bladder condition has improved since avoiding gluten. There has to be a connection. I also had thyroiditus (had never heard of it) and it came out of nowhere and took months to get over it. But, feeling much better these days. Looking back you realize it was all part of the puzzle.

  54. I mentioned the bleeding hemorrhoids- I finally had surgery for them last year, after 33 years together. I still carry Wet Ones to use as TP when I’m out of the house. I actually panic if have to go and found I forgot my Butt Wipes. What a life.

  55. For me…

    Lifelong “weird stomach” – could eat something and in 10 minutes be puking
    Very(!) painful PMS/cramping started in mid-teens
    Huge(!) uterine fibroids started in late teens
    GERD started in my early 20s and persisted until celiac diagnosis
    Unexplained infertility in mid-30s
    Hypothyroidism at 40
    Ovarian failure / early menopause at 41
    Anemia/low ferritin levels began at 44 and persisted until celiac diagnosis
    3x/week diarrhea started a year ago which prompted a gastroentrologist referral which finally resulted in celiac diagnosis
    Neuropathy/arthritis/ataxia developed during “gluten challenge”

        • I needed to add mouth and tongue sores – I guess they were canker sores/ulcers? During the year before my diagnosis, I was getting mouth/tongue sores 2 or 3 times per month. Ouch!

  56. As a baby:
    1. Failure to thrive

    As a child/teenager (diagnosed at 20):
    2. Anemia and low ferritin
    3. Very heavy, painful periods
    4. Low B12
    5. Low vitamin d
    6. Headache/dizziness after eating
    7. Fainting episodes
    8. Chronic fatigue
    9. Nausea (but never any actual vomiting)
    10. Sharp abdominal pain immediately after eating (the food needn’t contain gluten – apparently my insides were so damaged by that point that anything would aggravate it)
    11. Bloating/gas
    12. Very pale (almost white) stools (sometimes)
    13. Constipation (sometimes)
    14. Sudden urgent need to use the bathroom (but never diarrhoea)
    15. Significant weight-loss
    16. Swollen, tender stomach; constant (though usually mild) stomach ache
    17. Leg cramps
    18. Temporary loss of vision

    These pretty much all resolved within 2-3 years of diagnosis, except that I still have some problems with b12 and ferritin levels. The doctor thinks that my intestine was too damaged to heal completely normally, which may be why.

    If I accidentally get glutened, I will likely get symptoms 6, 10, 11, 13 or 14, and 16.

    I also have osteochondritis in one joint but I’m not sure if that’s connected. In spite of all of my other malabsorption issues, my calcium levels remained normal and I had a normal bone scan. I’ve also never had any problems with lactose intolerance (fortunately).

    NB. I was ultimately diagnosed because of the anemia. I told my gastroenterologist that I didn’t have any GI symptoms. I had been living with them for as long as I could remember so didn’t realise I wasn’t ‘normal’.

  57. My symptoms before DX were a slow build up to the BOOM! I had migraines for years, it would take me forever to wake up,. I forever had heartburn and gas. DX with reflux, and raynauds. I also was losing weight. Which, I loved at the time! I stayed constipated! When I used lax to go, it was always fatty stools.

    So onto the BOOM. I woke up one moring with stomach/side pain that would slowly grow and grow into terrible throbbing pain. I stayed bloated. I was still losing weight and staying constipated. Migraines were worse. I went through 36 different meds. 3 CT scans, a uterus biopsy, one female surgery that was not neccessary, blood test, and the pain kept getting worse. I finally got refered to a gastro whose PA said I had IBS.

    My weight lose was worrying all around me, now, even myself. My ribls were visible. People would later tell me they thought I had anorexia.

    After 3 more months, I told her I was going back to eating salad and felt a little better. She asked “have we tested you for Celiac” Uhmmm NO!

    One blood pannel later….then the endo……Intensive damage etc etc

    Fast forward to now, if I get glutened

    Brain fog
    headache
    no patience
    quick to anger
    terrible bloat
    extreme side pain (someone is trying my intestines in knots)
    pain shooting up my back and spin
    craps
    Constipation
    I do not feel like myself mentally at all

    My daughter said I should include bitchy ;) ha ha

  58. These are symptoms of mine I’ve dealt with collected from both before diagnosis and after . . .

    Physical symptoms:
    - Chronic diarrhea
    - Constipation
    - Bloating/gas
    - Nausea (persisted for hours sometimes)
    - Headaches
    - More frequent urination
    - Fatigue
    - Weight Loss
    - Slight skin irritations

    Mental symptoms:
    - Depression
    - Difficulty concentrating
    - Sudden mood changes
    - Loneliness/isolation
    - Insecurity

  59. Pre diagnosis:
    numbness in feet, moving up to my low back
    extreme fatigue
    weakness
    bloating
    constipation
    hair loss
    blurred vision
    eczema
    misdiagnosed first as MS then Mitchondrial disease

  60. Prior to diagnosis and eliminating gluten:
    Severe nausea and vomiting daily (up to 9x/d)
    Diarrhea- clay colored and mucousy
    Abdominal pain
    GI bleeding- both in my vomiting and stool
    Gastroparesis- has resolved after going gf
    Migraines
    Neuropathy
    Eczema
    Iritis
    Asthma
    Sacroilitis
    Vit b12 and d deficiency
    Fatigue
    Muscle cramps
    Mouth ulcers
    Brain fog
    Seizures

    Now when I’m glutened my symptoms are:
    Brain fog where I feel extremely drunk
    Abdominal pain
    Nausea/vomiting
    Joint pains
    Headache
    Fatigue
    Overall feeling not well for several days

  61. Oh wow where do I begin lol. For me I guess the first symptoms would be a sinus migraine with constant pressure behind my left eye. I had this for a decade every 2-3 weeks like clockwork. I would walk around with sinus Tylenol and advil in my purse constanstanly and it would either last for hours, others for days. Always feeling tired and run down, especially after eating anything with gluten. I never thought that this had anything to do with gluten….who would if you didn’t know??
    Later on it was upset insides (pain was about 2 fingers below on my left side just under my ribs). Bad attacks would cause me to not be able to stand up. Nausea, night blindness, achy joints, brain fog, can’t concentrate, diarreah, wicked mood swings with zero patience (my poor children) yes it could be known as bitchy lol. Gas that could clear a room (again my poor children lol).
    Then there’s the food intolerances which are slowly showing up one by one. So far it’s eggs, kiwi, bananas, avocados, gluten and when I get glutened,dairy seems to be troublesome.

  62. HI Gluten Dude,
    My name is Nina and I am 12 years old. My stomach symptoms are : Stomach Pain, Diarrhea, throwing up (sometimes) Mouth Ulcers, headache, foggy brain, I get the chills too and feeling bad from days sometimes weeks!

    • Hi Nina! My niece is 12 years old too and has always had a sensitive stomach. If she does have celiac, I hope that it holds off until she’s a little older. Take care of yourself. xoxo

  63. Bloating/stomach pain/constipation sometimes,
    Nausea everyday but no vomiting. Can’t tell you how many times I ran to the bathroom thinking I was going to puke.
    Deficient in iron. Vitamin b and d
    Fatigue like crazy, but terrible time going to sleep and staying asleep
    Extreme Weight loss.
    When I was younger had eczema.
    Also have GERD so some symptoms might be from that as well.

  64. Is it sick to say that I’m really comforted reading all these other people’s posts? It confirms that “I’m NOT crazy!” After reading all these people’s pain and suffering and how a simple diet change can offer hope, why are there so many article being written about how gluten-free eating is a “passing fad?” My answer to the non-sufferers who write these articles…why not try it? Would you rather people go on drugs? Or worse yet, just suffer?

    Thanks so much for writing this post!

    As for me, I had my first colonoscopy when I was 14 and was diagnosed with IBS. Then from 16-41 years old, I had seen doctors for; sinus infections, bladder infections, anxiety, depression, joint paint, brain fog, unexplained rashes, PMS, loss of hair, acne, infertility, migraines, muscle/neck pain. 2 years of being gluten-free undid what 17 different doctors over 25+ years couldn’t do. :)

  65. It is awesome that you are compiling this!
    I save everything, so I opened up my medical file, and had thankfully saved a piece of paper with all of my symptoms on it from early on in the year that I was eventually diagnosed as having Celiac Disease. Here is my list of symptoms:
    *extreme fatigue
    *difficulty concentrating
    *difficulty remembering details
    *difficulty making decisions
    *decreased energy
    *feelings of guilt, worthlessness or helplessness, pessimism
    *insomnia
    *irritability
    *loss of interests in activities, hobbies, etc.
    *appetite loss
    *unexplained weight loss (I dropped to my middle school weight and I was 34)
    *persistent aches and pains, joint pain
    *headaches & migraines
    *digestive issues: upper stomach pain, cramping
    *feeling sad & anxious, depressed

    I would also add that looking back one thing I’ve pieced together now that didn’t link then: terrible pregnancies. I had pre-term labor with both pregnancies, resulting in hospitalization and needing to be medicated to keep from delivering early. I believe now that this was due to the fact that my body wasn’t absorbing enough nutrients to sustain my baby and me.
    Also had difficulty regulating my hormone replacement therapy after my hysterectomy. I now realize that was due to the poor absorption of the medication due to my intestinal damage, and wish someone had pieced that together.
    90% of the symptoms I listed above resolved once diagnosed with Celiac and adhering to gluten-free diet. The depression was the first to go, I’d say.
    When I get glutened, many of those same pre-diagnosis symptoms return.
    I do still feel like my brain is not as “sharp” as it use to be, and my energy level definitely doesn’t seem comparable with that of my friends, but I find that really, comparing doesn’t help anything, so I’m just trying to establish and get used to my new “normal”.

  66. Besides the usual GI symptoms, my symptoms were also the result of malnutrition. Severe anemia (Hemoglobin was a 6), lost about 1/2 of my hair due to protein loss, severely dry skin…just flaking off due to vitamin D deficiency, severely dry eyes due to vitamin A deficiency, all blood studies were wacked out, & I weighed 98 lbs at 5’6″…looked like just skin & bones, no fat, & muscles were starting to degenerate.
    Above symptoms were pre-diagnosis. I was diagnosed in 1984 (when no one knew anything about it) after years of progressively getting worse. Thank God I finally found a good doc, he saved my life.

    • Oh yeah, forgot the acid reflux. And severe dehydration to the point where I could not walk & my legs felt like rubber bands, & that was the day I was admitted to the hospital. They gave me IV fluids, but could not figure out what was wrong. When they said they were going to do exploratory surgery, I signed myself out AMA, got myself a new doctor & was admitted into Pennsylvania Hospital where I was correctly diagnosed. I thank them for saving me.

    • I almost forgot…edema so bad in my ankles that they were 3 times the size of my legs. I know I am forgetting symptoms, ’cause I had everything under the sun.

  67. Where to start…

    Before diagnosis:
    - Low blood pressure
    - Low sugar levels
    - Sugar cravings
    - Uncontrollable weight loss
    - Bloating/ Gas
    - Constant stomach pain (every day)
    - DIARRHEA :(
    - Depression
    - Acid reflux
    - Unbearable period pain

    After diagnosis:
    - Chronic fatigue
    - Unstable sugar levels
    - Low energy
    - Feeling weak & drained all the time
    - Sinus allergies
    - Joint pain
    - Headaches
    - Depression
    - Irritability
    - Mood swings
    - Panic Attacks + Heart palpitations
    - Fever!!
    - Shakes
    - Bloating/ Gas
    - Nausea
    - Indigestion
    - Acid Reflux (Reduced a bit now)
    - Brain fog
    - Struggling to pick up weight
    - Brittle nails
    - Hair loss
    - Loss of appetite
    - Low Vit D

    Going for blood tests again soon, hopefully there aren’t more vitamin deficiencies to add to the list.
    Hope this helps someone out there get diagnosed sooner so they don’t have to suffer like the rest of us.

    Thanks GD :) .

    • Keratee,
      I actually forgot about listing all of my weird fingernail issues until seeing it in your list. About 2 years before dx I my fingernails developed vertical ripples and sometimes would get very thick and milky near the tips. When I would cut them, a weird white dust would come out. I actually went to my doc the first time it happened, thinking I had a fungal infection and she said that it definitely was not a fungus but that she didn’t know what it was. She attributed it to vitamin deficiency and that was that.

  68. It’s so encouraging to read over the replies here that include many of symptoms I experienced pre-diagnosis. Now I can show this to a few unbelieving people and say “see? I’m NOT a hypochondriac!”. :)
    pre:
    -diarrhea every single morning clearly showing the previous evening’s meal. It lasted until noon so going to class in the morning was a nightmare! (I thank God every morning when I wake up and experience morning like a regular person!)
    -severe asthma (almost disappeared)
    -eczema on my arms and hands
    -sick with cold or flu at least every two weeks (constant bronchitis)
    -bad rashes that for years I thought was acne (almost all gone! I can’t even remember my face being so smooth!)
    -nauseous 24/7, stomach pain to the point where I just stopped eating food for a week
    -constant exhaustion
    -horrible joint pain and swelling at 22
    -angry all the time
    -constant anxiety (especially about travel or going out anywhere for fear I’d have a diarrhea episode)
    -low iron levels
    -always coughing up mucus (Julie BK, I couldn’t believe someone else dealt with this too!)
    -suicidal
    -depression

    post:
    -digestive issues. still no dairy, processed sugar, spices, corn or soy, large meals and no night eating (ginger tea is by BBF)
    -occasional eczema breakouts ( possible glutenings?)
    -occasional joint pain

    Thanks for asking the question GD. The list will be great, but I think it’s also good for us to remember many of the symptoms that we don’t have to deal with anymore. Honestly, it brought tears to my eyes thinking about where I was just three years ago and how much better I feel :)

  69. I agree, Kelly.

    Multiple miscarriages and infertility were among the first symptoms I had (but it is only in retrospect that I can list those) and no doctor attributed those to celiac.

    My friend B –NO GI symptoms, etc. whatsoever, but like me, had miscarriages and could never carry to term. She was stunned when she received a celiac DX—she was tested because her sister was DXed—, but she never, ever thought she could be a celiac.

    Celiac is a complex, head-to-toe, multi-system disease–which explains the difficulty in getting a DX in the first place..

    I just met someone who (after talking with me) said “I am so happy to meet you. You make me feel like I am not crazy..” :)

    To anyone struggling to get a DX and suffering with symptoms like ours, I say ” You’re not crazy; you’re sick. And there’s a reason why”

  70. Before I was diagnosed, I didn’t show too many symptoms:
    -very low weight, didn’t break 100 pounds until high school
    Then the disease started to show up:
    - pain after eating
    -chronic gas after eating
    -depression to the point of suicidal thoughts
    -green, sticky poop with a lot of fat in it, it looked like I had been eating a lot of corn when I hadn’t been eating at all
    -pinching feeling in the intestines that I had mistaken for hunger pains
    -dehydration from going to the bathroom every hour
    -bloating
    -bad, metallic taste in mouth after eating

    I actually gained weight during that time, because my body was retaining all of this water. During my first two weeks of gluten free, I peed it all out.

    Today, when I eat gluten:
    -all of the above symptoms
    -bad headaches
    -constipation for the first few days, then diarrhea so severe it’s almost water
    -bloating and a puffy stomach, to the point where it looks like I’m six months pregnant

  71. I do not have celiacs myself…..but I helped my wife figure out that she had it. I don’t let go of things too easily, so my consistent drumbeat of nagging to figure out what was causing her frequent migraines was what finally led to her diagnosis.

    I’m so happy to see that so many people have been diagnosed and are leading much happier lives. I do all the cooking in my house….and so I typically eat gluten free most of the time. My wife is so sensitive that I don’t dare bring any gluten into the house……..

    I look forward to the day that most western trained doctors understand the disease, and actually test for it. There seems to be a theme of doctors not even considering celiacs when they see some of the symptoms that everyone describes.

  72. I’m going to tell you about my daughter’s journey since she is the Celiac in the family. As a mother, though it sometimes feels like you went through it yourself! Wow – where do I start:
    -constant stomachaches
    -nausea
    -sore throat
    -body aches and pains
    -diarrhea

    I immediately thought strep throat, until we went to what would be the first of many doctor visits. It was here we learned of her weight loss. She was already a petite girl so this was a bit concerning. Moving on:
    -continued above symptoms
    -deep, dark circles under eyes
    -discoloring of skin (pale and gray)
    -more weight loss

    To sum it up, my daughter Sarah was completely malnourished. To say the least I felt like “The Mother of the Year” (clearly kidding) for letting it continue for so long! It has now been almost 2 years of being completely gluten-free and Sarah is healthy as could be. In fact our entire family is healthier because of the void of gluten in our house.

    Thanks so much for asking – everyone loves to share their story and there is nothing more important than awareness!

  73. Subtle symptoms for a great deal of my life. I was a difficult teenager, struggling single mother, then I had a dx, duodenitis. A first GI symptom which was attributed to a habit of drinking pots of coffee and smoking tobacco on an empty stomach. Once I was able to pull my life together I lost a job after an industrial injury. What set off the most difficult of symptoms was, I’m sure, a gall bladder operation. I didn’t suffer much with gallbladder issues, but in an ultrasound of my hip that I had a polyp. I put off the surgery for ten or so years, but got antsy after hearing stories of my GGGrandmother’s death from liver necrosis. Once I had the surgery, I started having the kind of pains associated with gall bladder disease! Feeling of constrictions near the liver and stabbing pains in the upper back. Liver panels were good, the pains were attributed to scoliosis. After much PT, the pains continued and I was having terrible trouble concentrating and greasy diarrhea. I lost my job because I couldn’t concentrate. I stumbled upon information about celiac disease on the Internet and took it to heart. I went to a new doctor and told him during a check up that I thought I needed a GF diet while complaining about the pain and feeling of constriction, and the diarrhea. He told me not to change my diet until I took a blood test and gave me a slip to take to the lab. The next day he called me, very excited, saying emphatically “You need a GF diet!!” Simple, but not easy.
    Since then I’ve even relieved of the stabbing pains and diarrhea. We’re still working on the constrictive feelings near the liver. Using Cheladonium Majus 30X homeopathic remedy now.
    I’ve found since giving up gluten that my mind is a lot clearer and I can concentrate better, although some depression lingers. In addition to gluten I’ve had to give up coffee, pork, potatoes, rice and sugar. I seem to have trouble with polysaccharides. Pork because it gives me heartburn, although I can eat if if it’s cured. And coffee makes a reaction just like gluten, in a very embarrassing way.

  74. Pre-diagnosis:
    - constipation

    Post diagnosis (when I’ve been glutened)
    - stomach ache
    - constipation
    - swollen gums
    - painful canker sores
    - depression
    - anxiety
    - insomnia
    - irritability (I’m not a nice person to live with when I’ve been glutened!)
    - difficulty concentrating
    - loss of appetite
    - bloating

    These symptoms generally for last 6-8 weeks after ingestion of gluten.

    I’ve never ever had diarrhea from gluten (which makes it easy to distinguish between gluten reactions and the stomach flu!)

  75. Awesome idea!

    I was dealing with severe fatigue, achiness and headaches when I started the elimination diet that revealed problems with gluten. I have a history of other food allergies, and thought it was new symptoms related to those, so I didn’t pay terribly close attention beyond that.

    Since going GF 3.5 years ago, ‘getting glutened’ involves:
    - around 20 minutes post-ingestion, my joints will start to cause me pain, and I’ll also get really tired – I’ve had to sleep for a few hours before driving any significant distances when this has happened, since if it’s a severe glutening, I’m not able to focus enough to drive safely. Drinking water can help moderate the symptoms.
    - for the first 24 hours, it’s lots of brain fog and pain, similar to what I get when I have a high fever. I crave sugar, since it helps my brain claw out of the fog a bit. Digestion is iffy – often there’s a lot of gas, and moderate diarrhea. My body odor also gets a lot stronger, and smells ‘off’.
    - the 2nd and 3rd days are more of the same, but things usually get better with each day
    - 3-5 days after glutening, I’m tired and a bit dehydrated, but feel much more ‘myself’.

  76. Depression
    Bloat
    Swelling in hands and feet
    Brain fog
    Trouble concentrating
    Constipation
    Diarrhea
    Gas
    Stomach pain
    Fibromyalgia pain, especially in shoulders and legs
    Joint pain
    Tiredness
    Gall bladder issues (which I thought was the cause of everything above, turns out I could have saved my all bladder had I known gluten was the cause).

  77. A lot of the usual issues like anemia and bloating, but strangest ones for me (still didn’t get diagnosed for years):

    Difficulty speaking after drinking unless i ckeared my throat first. this was for for a week or so, intermittently, until:

    Sudden tetany in my hands and feet and feeling of numbness in whole body and I could not unclench hands and feet. (I’d had some pins and needles on and off for about 2 days before this)

    This was because my calcium was critically low. (Malabsorption) Was in the hospital for a week while they attempted to figure out why, which they didn’t.

    Very glad for a diagnosis. My friend was reading online and told me to get tested.

  78. My doctor suspected something was wrong when I was anemic, low in both iron and vitamin D. She ordered an endoscopy, which proved to be positive for celiac disease. I stick with gluten-free products now, my blood levels have improved and I haven’t many problems, thankfully.

  79. Valerie B “Stupid delicious gluten, I need GA for celiac’s”
    Lisa “I’ve been silently stalking this blog”
    Simple statements like this make my day.
    Road trip to Lisa’s or you can come to Saskatoon.
    We’ll party like its 1999. Thanks for sharing everyone.
    My vision turned near-sighted in 1977. Gee, I wonder why.
    Stupid butter tarts…haha

  80. Starting back about 14 years ago when I was 10 years old, I had terrible migraines, awful skin rashes, and downright awful stomach pains continually! When I was 12, my parents switched me from a pediatric doctor to a normal Internal Medicine doctor, this doctor tested me for EVERYTHING under the sun (except celiacs), even cancer. After a while and tons of blood tests later, this doctor was removed from the practice and the constant testing for what was wrong with me came to a sudden stop as my new doctor didn’t think there was anything wrong with me.

    As time went on I got even more sick…
    -When I got sick, I would get REALLY sick, like in the hospital, down for the count sick
    -I HAD hoshimotos disease, until I got my thyroid removed because it would not stop growing (I have been told that if I knew of my celiacs diagnosis before hand, I would’ve avoided this awful experience in my life)
    -I got diagnosed with Dystonia and told I would probably end up in a wheel chair by the time I was 30 because of how bad my muscles would spasm and cramp up.
    -I was told I was allergic to almost everything under the sun.
    -Had migraines so bad I was seeing a neurologist regularly who eventually told me he couldn’t help me.
    -My hair started falling out by the handful.
    -I started to lose my memory, I couldn’t remember people’s names, facts or figures
    -Was constantly in a fog – couldn’t think clearly, nothing really made sense
    -Joint pain so bad I was tested multiple times for juvenile arthritis, then when I got older rheumatoid arthritis
    -Terrible chest pains
    -Stumbling/Slurring speech at times
    -Extremely low iron levels
    -Depression
    -Fatigue – Towards the last few months before I was diagnosed, I was sleeping upwards of 16 hours a day and was still exhausted!
    -Skin rashes that would not go away

    Last summer, I was finally diagnosed with Celiacs disease, after my boyfriend begged me to go get tested, after his Power Lifting buddies girlfriend had just got diagnosed. I have grown to hate doctors so didn’t want to go, but ended up going and begging my doctor to test me, which he would not. So I ended up going to a GI doctor that did the blood test for me right away. Three days later I got a call saying my protein levels were above 200 and I needed to schedule a biopsy immediately. I got a phone call from my doctor while I was on vacation saying I was definitely a celiac and needed to stop eating gluten immediately. (What a way to RUIN a perfectly awesome vacation!)

    All of the above symptoms had gone away after about 3 months of eating gluten free, and I have felt better and better as the time has gone on. For me, finding out I was a celiac was a shock at first, but it was also a much needed answer to how dreadful my life was becoming!

  81. This is a great idea, reading this so many people have similar symptoms to me, I had assumed most people get diarrhoea – that’s not my experience at all. I initially went to my docs because the headaches got so bad – I was sent for all kinds of scans before being signed off work with ‘stress’. It was actually an alternative practitioner who said ‘get them to look at your stomach/digestion’ which eventually led to the coeliac blood test (but only because they wanted to exclude it before diagnosing IBS). Ironic considering I am very sceptical about alternative medicine.

    Symptoms are:
    A very specific headache – right at the front of my head, and with spots in my vision when at it’s worst. Not relieved by standard painkillers (even prescription).
    Severe constipation, followed by stomach cramps & urgency.
    Bloating immediately after eating & stabbing pains in my stomach.
    Mouth ulcers.
    The dreaded ‘brain fog’ – low energy, inability to concentrate .
    Low mood.
    Tiredness.
    Mild anaemia.

  82. I had a rotor virus for a week, and one month to the date got peripheral neuropathy, and fibromyalgia. Then extreme fatigue and brain fog. Then the stomach issues like Ibs came. Then a constant rash. I decided to go gluten free because celiac runs i my familly. It had made a difference in many ways but was still feeling symptoms on occasion. . I went lactose fee, casein free egg free soy free…..you name it. Still had periodic symptoms anyway but also felt good most days.. I got diverticulitis later on and had a 10day course of antibiotics. A year later I have diverticulitis again! Still have Ibs and neuropathy here and there. I think cross contamination is to blame. I hope there is a cure soon. I take probiotics, enzymes, and alo Vera juice. Joined the celiac group and did a lot do research. But oh, a cure would be great.

  83. Hi,

    I am ravi. I need your help. I am facing following problems

    1. I found red spots in my skin (especially on chest and stomach only). If i walk in sun light, then total my body (hand, neck, back, chest stomache.

    2. most of the time feeling heat in my palm and sole of the foot.

    3. sudden abdominal pain(severe), after that vomiting,

    4. memory loss.

    5.Less weight

    the above are due to celiac disease..???

    Thanks
    Ravi

    • Ravi,

      Have you been checked for Shingles? Do you have those red spots in a rash like pattern that stretch from your back around to your stomach?

      Or do you have sore achy muscles too?

      Could be allergic to the sun as well.

      Hope you find out what it is and get it all taken care of :-)

      TC

      • Hi Kim,

        I don’t think it is shingles but red spots around my body (back and stomach and neck). Not like pattern, allergic to the sun.

        I don’t have sore achy muscles.

        Thanks for your care
        Ravi

        • Ravi,

          Well, I hope you find the cause. You can buy an at home kit to check for celiac disease. Also, there are tons of rash, spot skin pics on google or bing….maybe you’ll see something similar? I’m sure you’ve already thought of that, but just in case ;-)

          • Hi Kim,

            I have already seen skin rash pics in google and one more symptom is abdominal pain faced after eating gluten food. these two are symptoms for celiac disease.

            I need to checkup for celiac disease. I am singapore, How the kit is..?? where can i get the kit ..??? (Because i am not aware of celiac disease)

            Thanks
            Ravi

  84. Hi, Im here to ask a question, do I have celiac disease?

    Symptoms:

    Sad (sometimes)
    Yellow stuff in my stool
    Bruxism, (TEETH GRINDING)
    Thats’s all,

    Another question,

    WHY DO I HAVE YELLOW LIQUID IN MY STOOL…

    PLEASE ANSWER IM SO NERVOUS NOW…..

  85. It’s so affirming to see all these comments from people who share this common disease, if not common symptoms. Thank you so much for gathering us in one place & offering this opportunity to share our Celiac journeys with one another.

    My symptoms have included:
    Fatigue, debilitating at times
    Depression
    Irritability, severe at times
    Insomnia
    Nose Bleeds
    Bruising easily (a result of Vit C deficiency)
    An odd Mediterranean looking skin tone, unnatural to one w/Scandinavian & WASP heritage (a result of Vit D deficiency)
    A bizarre kind of buzzing-like sensation in my ears, similar to, but not quite a sense of vertigo
    Injuries: Too many sprained ankles to count
    Ribs pulled out of place w/torn tissue
    Muscle pulls/injuries
    Cartilage tears in both knees
    Fractures of both feet
    *Note: I know it seems “how can you attribute these injuries to Celiac Disease?” but I had never been prone to accidents before the onset of sxs now known to have been from Celiac Disease & for the 9 years before my diagnosis I was plagued by chronic injuries. Since my dx & becoming gluten free- I am injury-free.
    Vit B deficiency
    When I was diagnosed I had no Ferritin left in my bone marrow (hence the bone fractures, no doubt)
    Hypothyroidism
    A drastic elevation of my Cholesterol

    I am one of the rare people w/Celiac Disease who does not have GI distress/stomach pain/gas/bloating/vomiting/etc. I am very curious to learn & correspond w/others who also do not have these sxs. It seems rare to the point of uniqueness & I would really appreciate connecting w/others who have this phenomena w/the disease.

    I am always happy to connect w/other Celiacs, so please feel free to contact me.

    Thanks!
    -Shay
    Gluten Free Girl in Atlanta
    GlutenFreePA@icloud.com
    http://www.facebook.com/GlutenFreePAExtraordinaire

  86. After years of skin rash, fatique, anxiety attacks, and non stop stomach issues (constantly seeking a restroom) I finally came across information regarding Gluten Intolerance and Celiac disease.

    My condition became so severe that I was constantly calling out sick from work from being so fatiqued, having bloated red skin rash all over my arms and body, constant stomach pain and diarrhea, and then I began getting the brain fog to the point I could not even drive. I would wake up each morning nauseated to the point I would throw up. My pinky fingers would cramp up and ache to a point I could not type, my anxiety attacks got worse until I would have full panic attacks. I grew afraid of having a panic attack so I would rarely leave the house. I became a homebody, depressed, and anxiety ridden constantly sick without knowing why. I was suffering while I watched job performance and attendance begin to suffer too.

    I eliminated gluten 4 months ago and my symptoms faded almost immediately.

    Within weeks of my new gluten free diet, I accidently ate a meal that was loaded with bread crumbs. For 3 days I felt confused where I was, sick to my stomach, my skin for the first day was broken out in rashes all over my face and arms. My boyfriend described me as a zombie saying I would stumble and rarely respond to him.

    I only cook at home now, as I’ve learned just the smallest traces by mistake cause me to feel all the symptoms.

    It is strange though that I never felt like I ever got the brain fog completely rid of. I constantly have a mild sensation of the blurry, confusing sight. Regardless, I’m just happy to be able to live a normal life again and living life outside of the restroom and bedroom.

    Side note: I also used to suffer from chronic kidney pain and infections causing ER visits often – which I have not had since I have been gluten free. It could or could not be a coincidence, but having constant diarrhea, left me constantly dehydrated, my guess, not allowing my kidneys to properly “flush”.

  87. Hello,
    I am just waiting for a blood test to test for Celiac disease, but would love some info from people who have been in this situation.
    I have suffered with IBS for several years but lately it’s just got so bad – bloating, constipation, diarreah, funny smelling stools (burnt/sweet smell?).
    I have terrible PMS and always late periods.
    I had surgery in February and I have read it can be triggered by this.
    I am irritable and have mood swings. I am not over weight but cannot lose the few pounds that I would like to despite eating so healthly.
    I have developed a white ulcer on the roof of my mouth just this week.
    And to add to all this I recently had severe reaction to shellfish. I feel very confused and anxious about the whole thing.
    Does anybody have any advise? Does this sound like Celiac?

    • Hi janeyJo
      See my post below. My blood tests came back negative to celiac, but going gluten free helped my symptoms which were similar to yours.

      Give up gluten for two weeks to a month and gauge your symptoms.

      Good luck.
      Mel

  88. Hi,
    I’m classed as gluten intolerant as the blood tests come back negative for celiac. I found out I was intolerant by accident a year ago when seeing an immunologist for severe hayfever allergies. Within 2 weeks of going gluten free I felt like a new woman. Its suprising that you accept feeling blah all the time. And suddenly it all made sense. I just got back from vacation in Italy spending my days eating pizza and pasta. My feet swelled so much I had to buy new shoes a size larger. (I thought it was all the walking). I also react badly to alcohol and mildly to milk.

    For years I talked to my gp about feeling sluggish, tired, foggy, and my stomach was always gurgling and so much gas. I also was stacking on weight and had started to get problems with foot swelling and constant foot pain. Frustrating thing was the drs thought I was a hypochondriac after blood tests returned nothing. Asked me if I was depressed and told me to take a berrocca (vitamin b and c).

    I must say I was devastated to cut out wheat. I love pasta! But have found some decent gluten free brands in Australia. Every so often I crave something “normal”. Had a turkish kebab the other week. Woke up the next morning with…. Stiff knuckles. Swelling in hands and feet. A headache and bad pain in my belly. Gas for about 3 days.

    I would suggest if people have symptoms to try a gluten free diet. I find it hard to stick to the diet particulary when they have morning tea at work and the delicious mud cake is staring at you and saying “eat me” but the pain I know I get deters me from taking “just a little bit”. I try to stick to paeleo diet. Meat, fruit and veg and rice.

    Mel

  89. Hi guys,

    I have been comparing my symptoms on here for weeks now so thought I would share mine. I have positive bloodwork now waiting for biopsy.

    Diarrhea
    Stomach cramps
    Aches and pains all over body
    Muscle spasms
    Tingling in legs and feet
    Clicking and very achy joints
    Lower back pain
    Chest feels full and achy
    Blood in stools just recently
    Very anemic
    Lost weight during recentt pregnancy and lots more since giving birth, always been overweight before
    Foggy head (couldn’t believe when I came on here and saw other people saying foggy head! That’s the only way I could describe what I felt
    Headaches
    Very ichy, burning rash on hands that comes and goes (wondering if its DH)
    Misscarriages
    Bucketloads of anxiety and panic attacks since this has all kicked in to full gear

    Think that’s about it. Have been diagnosed as having IBS for 10 yrs but since having my last baby everything has come on very suddenly and strong and have been prescribed anti depressants, iron tablets, hayfever tablets, beta blockers and told that pretty much all of my symptoms are anxiety and stress related! Until my lovely doctor on a whim said let’s do a blood test for coeliac disease and see. Now waiting for biopsy then will have to test my kids as some of them have various health issues with my eldest being diagnosed ADHD.

    Hope my appt comes round quick and I can start the diet and with any luck start feeling better :-)

    Maxine

  90. I have all the same things that others here have listed and am now a year out from self diagnosis. (I won’t purposely ingest gluten now that I know what life can be like again. I don’t need a piece of paper in my medical file that bad.) I am amazed at some of what you all wrote. I had never linked it before but I also have hearing loss/tinnitus and foot issues and so many more. I am shocked that this disease can take so many forms. I really thought I was well informed until reading everyone’s symptoms. I can say now, I am NOT crazy. I love the Celiac community and truly appreciate GD for this forum for all of us. Not every disease or medical condition can brag about it’s support groups but WE CAN!

  91. I have had and continue to have all same symptoms minus pregnancies. It took 2 years to finally be diagnosed. I saw pcp, surgeons, surgery to look for endometriosis , x rays, MRIs, ultrasounds, acupuncture, pain meds and withdrawal, chiropractic therapy, physical therapy, dietician, etc…. It was my massage therapist and friend who was trying to help stomach pain. So when diagnosed,iimmediately went gluten free and have been since. I’ve done a lot of research and continue to have bouts or “funks” as my husband and I say. It’s a life changer, but workable. Got 2 puppies after loss of my best friend, standard poodle, went into “funk”. Foggy, and all stated, back again, now going away. I can tell immediately when I open my eyes in the morning if its going to be good day or bad. I stay positive, have lost friendships, but my husband and mother with me all the way. Today is a good day and I’m happy! This is my first time opening up on any site. Bottom line is, there is hope for you and happy days will come again. Kim64

  92. Just wanted to contribute my experiences. I’m 24, and have had issues since I was in elementary school. Started out with just constant diarrhea and stomach aches. Started getting headaches as well around the age of 6, and major foot cramps around the age of 10 (couldn’t even go into a swimming pool because the water would set it off). I never thought much of it because nothing inconvenienced me enough to complain to a doctor about. I just figured it was normal.
    When I hit high school, things got a little worse. My headaches were more constant. I would get probably 3 a week. Lots of diarrhea, and stomach aches every morning. I would wake up with major stomach and back cramping (the only way I can describe it is I feel like my organs are all severely swollen) takes a couple hours after getting up for it to go away. I also started getting really foggy and had a difficult time concentrating. I had blood tests for this but they told me it was just stress and “being a teenager”. My grades suffered significantly. Since graduating things have really gone downhill. The morning stomach pain is everyday. I have headaches almost every day, and I’ve had a few debilitating migraines which prompted ct scans and blood tests. Nothing came back. I figured because migraines run in my family, I’m just predisposed. I’ve suffered sever panic attacks and a full on blackout. This required more blood work and an EKG. Again, nothing. I just stopped bothering going to the doctor because I felt like I was wasting his time (he’s been amazing though, always looking to help). I get constant sever muscle aches, tingling in hands and feet (accompanied by stiffness/numbness), spots on my skin (similar to ringworm, but have had it checked and it is not), blurry vision despite my very minor prescription not changing, ringing/hearing loss in one ear for a few seconds, muscle twitching, incredibly itchy skin, hard fluid filled bumps on my hairline at the back of my neck, “water blisters” on my fingers, extreme fatigue, “wave of exhaustion” as I like to call it (I’ll be sitting at my desk then suddenly get so weak for a split second that I can’t hold my head up). Many more things, but these are the most prominent.
    A few weeks ago I spent a weekend camping (ie eating junk), and ended up with the worst stomach pain and headache for a few days after. My boyfriend begged me to make an appointment, but I didn’t want to. Not until a coworker mentioned celiac, and I began looking it up and realizing I have almost every symptom. I go next week to get my blood work to test for it, although I already know gluten is the culprit. I’ve experimented with “low carb” dieting (no gluten at all) three times in the past two years, and everytime I do, ALL my symptoms fade or disappear. So regardless of if I get the celiac diagnosis or not, I’ll follow the gluten-free diet once my testing is complete. Thanks so much for this, and everyone who has posted. For the first time in my life I feel like it’s NOT all in my head!

    • I know this is an old post – but I noticed you wrote about how going in a swimming pool triggered your symptoms. I think that my celiac daughter has been experiencing this, but of course it’s hard to nail down exactly what is triggering her symptoms. I’d love to touch base with you or anyone else about it. Do you think there were trace amounts of gluten in the pool or do you think it was the chemicals from the pool that bothered you? Anyway, it’s nice to see that I’m not alone in thinking that it could be the swimming pool that’s bothering her and I’d love to hear from anyone who has experienced something similar. It would be pretty sad for her to not be able to swim regularly any more. (But feeling good is more important.)

  93. I’m so glad you are feeling better! You will have good and bad days but it is such a relief when symptoms subside. You are young, I am in late 40s ish:) so takes a little longer. One step at a time, there is a lot, I mean a lot of info on celiac and gluten intolerance. When I was your age, I developed Graves Eye Disease, which is very, very, rare. Had radiation treatments and it changed my entire appearance, point is, it’s autoimmune related. Then I had hives, big hives that would not go away for 2 years! I then went on, like you, to have panic attacks, anxiety, depression, insomnia, etc….got through it all. I wish I would have known gluten was maybe the culprit. I loved pasta and breads, I lived on it! Now I find other things that I really enjoy eating. Natural foods are all gluten free, so that’s easy part. You then just start reading labels and you will find more and more that you like, sometimes it can even be fun! Keep us posted, and stay strong! This was in response to Kells comment and everyone else:) kim64

  94. My husband was diagnosed as Coeliac in 2005/06 at 61 years old. He saw our doctor because he had started to feel very uncomfortable when eating – as if the food was not going down properly and was sticking in his oesophegus. He was also extremely tired, even when relaxing at week-ends. After blood tests he was found to have an iron deficiency and was very anaemic and in fact the doctor was worried that this might be due to internal bleeding so he arranged for him to have an Endoscopy. That proved to be negative so a Colonoscopy was done, from which the diagnosis was eventually made. During the Colonoscopy, the villi fingers in the gut were shown to be lying flat because of the food intolerance, so all the essential nutrients were passing over them and not being absorbed by the body. Apparently the feeling of fullness and food not being digested properly was due to the lack of iron. Since following a gluten and wheat free diet, he has been fine. Unfortunately he does not present with any immediate symptoms so would not necessarily be aware if he ate anything which contained gluten and wheat but he is very careful at all times because he was left in no doubt by the consultant that it may eventually have led to bowel cancer if left undiagnosed.

  95. I have recently discovered that I am gluten intolerant after being sick for most of my life. When I was an infant, I was diagnosed as allergic to milk. From there I had chronic stomach pain, diarrhea, had my gallbladder removed at 23, vomiting, excess bile in stomach, GERD, heartburn, feeling of food being stuck in my esophagus, heavy irregular menstrual periods, headaches, joint pain, clicking joints, allergic rhinitis that didn’t show up until well in my 30′s, recurrent sinus infections, hearing loss, tinnitus, fainting spells, weight gain, sleeping problems, waking up tired, exhaustion, rapid heart beat after eating, drops in blood sugar, brain fog, brittle fingernails, burning feet, tingling in hands and feet, sciatica. I am sure there are some I am leaving out.

  96. Hello all! After spending most of my life not wanting to talk about illnesses, I am almost evangelistic about spreading awareness of Celiacs! My symptoms went un-diagnosed for years. I never had stomach or rash problems, my issue was EXTREME cramping, up and down both sides of my legs. I lost most of the circulation in both legs–in mid-August, wearing shoes, my feet would be ice-cold. I started bursting blood vessels in both legs–red spots all over my calves. Those symptoms are NORMALLY a dead giveaway for Deep Vein Thrombosis or heart disease, and naturally this is what the doctors focused on….but all tests were negative. Eventually, over a 10-year plus span, although I managed to keep my job, I was sleeping all the time I was not at work, and my weight had dropped to 125 pounds (I am 6′-2″ tall!!) It was a cancer specialist (oddly) who finally made the connection, and I was diagnosed with Celiacs (both blood antibodies and stomach lining sample) 2 years later, the cramps and bursting vessels are a thing of the past, I have energy and have started dating again! I developed DH, and fight with that intermittently, but hey! IF YOU ARE SICK, NEVER GIVE UP LOOKING FOR THE SOURCE! I am so blessed to have found some relief–ALWAYS consider Celiacs when someone has a mysterious health issue!

  97. joint pain- diagnosed with Lupus & Fibromyalgia
    ulcers- stomach issues since I can remember
    nerve damage- last 5 yrs i my neck
    severe migraines, some that lasted days
    teeth enamel eroded
    gum line receeded
    hair falling out
    dry brittle hair
    white spots under my nails
    brittle nails
    weight issues- u just can’t lose it
    oh, so very very tired all of the time
    brain fog so severely I was diagnosed with ADD, depression and anxiety

    A student dr suggested a gf diet, I was scheduled for 2 surgeries, to have my gallbladder removed and my bone spurs shaved off my shoulder blade and collar bone. Figured, what did I have to lose. So I got onboard with the GF diet, and within 72 hours I was impressed. Now, 5 month later, hair & nails are better, the dentist can see the progessive enamel loss a receding of the gumline has halted. No migraines, my neck and shoulder still hurts from the bone damage and the bone “spurs” have dissolved themselves.

  98. So I’m a week out from being glutened and am still having shortness of breath, headaches, etc. I assume this is to be expected for weeks while my system purges out the gluten, right?

  99. Hello out there! In the past three months I have been sick, all the same, unbelievable fatigue, ibs, really just want to sleep, care about nothing! The only thing I can figure out is stress. Gf, lactose free, etc. anyone have this many relapses, if you will, in this short of time period? Kim64

  100. Where to start, as a teenager and in adulthood difficulty focusing, fatigue and hunger…labeled as lazy, inattentive..tested for hypoglycemia and told I was borderline and it was diet related??? no one offered to explain this more or tell me what I could do . As a kid every appointment to the dentist was a filling, poor enamel etc
    Later on I developed diarrhea, regular consistent every morning like clockwork and was told I was dairy intolerant – cutting out dairy helped but didnt stop the diarreha…then diverticulitus resulting in 2 surgeries to repair my urethra…then an inflamed uterus resulting in a hysterectomy.(just this year I had surgery to lift my bladder and vaginal vault – prolly due to the hysterectomy and age- a common thing) then what looked like boils or huge pimples on the inside of my thighs near the genital area and on two spots on either side of my waist ( I washed like an OCD person then thinking I wasnt clean enough)..then joint issues with a diagnosis of calcium deposit disease, then a rash (blistery, watery, very itchy covering my hands and ankles) that the dermatologist dismissed as “I dont know what it is but it looks like its run its course” As I gained adulthood so did I gain weight, until in my 40′s I was over 200lb no matter what I did, crippled with joint pain so much I was limping and constantly hungry. My sister and I have very similiar symptoms, I chose to follow the atkins diet and my sister didnt. I lost 75lb in one year, energy levels soared, brain fog disappeared, joint pain gone….my sister then decieded to follow a gluten free diet and found that her symptoms cleared up, her ability to lose weight is much slower as she chose to replace high carb foods with wheat with gluten free products. My kids and hers are all now gluten free and finding a big difference.
    I just hope my kids will avoid all the health problems that my sister and I experienced. The doctors never looked at the whole, never asked is it gluten? But the symptoms are so wide and dont always appear all at once and can mimic so many other things…I truly hope what your doing here will help, Doctors …pay attention!

  101. Hi everyone,

    I am in the midst of trying to find out what has been wrong with me and cutting out Gluetin has seemed to help.

    My symptoms are (here goes)

    My face burns then turns scaly/rash
    Stomach cramps
    Bed ridden after having a few beer.
    Tired
    Dizzy at times
    Sore back, neck etc
    Eat then seems to go right through me sometimes
    Etc.

    Thanks for all the help and I am glad to see there is an active site where people can help each other!

    Derek

  102. I was 18 was I was first diagnosed, its not been a about a year and a half since the original diagnosis. What caused me to seek medical attention was that I couldn’t stand for more then 20 minutes tops! Every time I did I had gut wrenching pain, It felt like had gas I had been holding in for days, and my stomach was about to explode. The only relief was to sit down or when the pain was more severe the fetal position was the only form of relief. Unfortunately working in a stand up job as I had made this pain occur multiple times daily and forced me to go home sick many times a month. But other than this, this was my only symptom. Once I started seeing my doctor and the specialist they where all confused, my singular symptom could be a result of many thing and illnesses. The tested me for Crones and Collides, and stomach positioning problems, gallbladder issues and many other things. They did a blood test about a year into testing for many things, one being celiac’s. Unfortunately that test came back negative and so we continued the generic testing. I received diet journals, a radiology test and scans until finally they decided to test me again for celiac’s. I went in for my upper GI scope and had over 30 biopsy’s taken from my intestines. Once I awoke the doctor was waiting outside, What I found out was that he already could tell that I had celiac’s and that I should start a strict gluten free diet right away. Now that I have been gluten free for abut 9 months I no longer get the sever stomach pain; unless of course I get ‘glutenized’. My symptoms now are changing and I don’t feel any pain or feel any symptoms as long as I stay away from gluten but as soon as I eat something- even just cross contaminated I get sever stomach pain, bloating, and as well feel like –as gross as this is- I have acid eating away at my stomach lining. Its painful and later in the night I end up with diarrhea and gas. When I was first diagnosed I didn’t understand, I was overwhelmed and young and stubborn. I didn’t stop eating gluten until bout 6-8 months after I was diagnosed. It took me seeing blood in my poop and having diarrhea daily to finally stop eating gluten. But now, I have never felt better. What I didn’t know at the time was that my estranged grandmother has had celiac’s for over 20 years.

  103. My daughter (high school Junior) was diagnosed with celiac disease one year ago and we went gluten free. She has had a few mild glutenings since then and would experience stomach pain and nausea. The fatigue is unrelenting. I feel confident that she has not gotten any gluten recently but her symptoms (non digestive) this past month have been awful: extreme fatigue, difficulty sleeping but more difficulty waking after falling asleep, depression, irritability, joint pain, muscle weakness, headaches, intermittent brain fog, fever (101.2) 2 days ago, and swollen lymph glands in her neck. Full panel of blood work shows everything is normal…white count, iron and ferritin, sugar, salts, vitamin levels are all fine. Tests for inflammation are negative. Mono (EBV), lupus, RA, all negative. Her doctor has no further ideas and is referring us to a neurologist. Does anyone else have continuing symptoms 1 year after going gluten free? I saw some comments of symptoms that I understood to be post gluten free. It seems that stresses at school triggered her current litany of symptoms. Does anyone have suggestions of what to do to help her?

  104. What can I say ? I am not diagnosed with Celiac so I am not yet sure this is my issue. Yet all of my symptoms I’ve read above.Throughout my life I’ve had sinuses, eczema or pustular psoriasis (I was never diagnosed). I’ve also had dull pains all over my body since I immigrated to Canada. I went to see many doctors, I suspected it could have been Arthritis, however no one was able to figure it out. Most Doctors were @#$@#$ asking me if I was depressed and/or a hypochondriac. Which is ironic since I HATE going to the Doctors. So much so I’ve put up with 10+ years of pain. It would be interesting to see if all these disappear.

    Not to make this any longer, within a few weeks after going through sa stressful separation, my health went downhill. It started slowly (bad taste in the mouth, bad breath, and phlegm in the morning), an itch all over my body with no rash, to rumbling noise in the stomach. Shortly after that everything started falling apart:
    First thing I got (and this is all my diagnosis)
    Psoriatic Arthritis in the left leg out of the blue. Stayed for a week then vanished.
    Lightheadedness and pain in my chest,
    Vibrations in my abdomen and mild abdominal pain (like needles have been poking here and there).
    Slow stool passing.
    Ringing in the ears
    Short lasting fevers at night
    Blood work shows weird results. Especially with Bilirubin a little higher than normal.
    Constipation and hard stools. So hard it is quite painful to pass the stool.
    Pain in the abdomen (now lasting longer and more painful)
    Feeling like my intestines are quite heavy.
    Of course I had to go to many doctors before someone took it seriously. She scheduled me for a lot of tests (Ultrasound, Blood work, X-Rays), and
    This morning as I was bent over I felt this heavy weight behind my right ear. I have no idea what it is. It was frightening.

    I went to the blood lab and as I was sitting there waiting for my turn, I started having this strange feeling of being quite weak. Almost feeling my blood rush allover my upper body, I started to sweat like crazy (maybe a hot flash – I am male). They called the ambulance, I went to Emergency. They found all my vitals were OK and said there is nothing wrong with me. I pleaded with them to test me for stuff, they did some blood work and found a high biliruben again.
    I saw some floaters while I was waiting there.
    I am still waiting for my GI scope in a few days , I hope nothing else goes bad until then.
    My eyes are burning now. Of course I’ve gone off Gluten for a few days now (or so I thought, I had some Sausages) .

    How long does it take for the symptoms to clear after going gluten-free ?

  105. I don’t know if gluten this the root of my problem, but the more I research it the more it seems like it very well could be! I’d brushed it off even when I’d gone gluten free before and it didn’t help – however the longest I’d ever done it for was a month. For me that very well may not be long enough to see results.

    My symptoms are:
    Constant dizziness (like I’m drunk) – this has been 24/7 for the last year or so
    Nausea
    Joint aches/pains
    Muscle pain
    Muscle twitches
    Body twitches
    Heart palpitations
    Racing heart beat
    Very intense heart beat (makes my clothes visibly jump)
    Brain fog
    Head/ear pressure
    Tinnitus
    Eye pressure
    Tired eyes
    Blurry vision
    Extreme exhaustion all the time
    Bruise like a peach and they stick around for a long time

    I’m sure there are more but that’s all I can think of for now.

    My doctors had originally diagnosed me with Lyme disease even with a negative test. In fact all my blood tests came back completely normal. I lived about 20 min from Lyme, CT and the symptoms matched so they just went with the obvious. 8.5 months of antibiotics later and I still felt no better. Moved to CA, had another Lyme test back, still came back negative so my Dr said he really didn’t think that’s what was wrong. He said I was completely healthy minus the fact that I had so many horrible symptoms. He then tested me for RA, Lupus, Thyroid, Vitamin B12, Vitamin D, EBV, and a few others. Once again all of my blood tests came back completely normal. He said my Vitamin D was a bit low but not out of range and that at one point I had some form of Mono (although not the normal strand when one thinks of Mono). He said that could have set off an autoimmune response but I think it’s a bit more than that. Going gluten free for the foreseeable future now and listening to my body – I’m now depending on it to tell me what it needs/doesn’t want. Hopefully it’ll get me somewhere!

  106. I get to the most horrific states of gas/cramping/constipation (usully more constipation than diarea). when i am in this state i CAN NOT SLEEP. i have been up for more than 12 days straight feeling nothing but utterly exhausted and dying… er doctors just send me home with benedryl and say not to worry about it. heh. i fasted for over a day several days ago but i did consume alot of alcohol. and i did slip up and drink alot of gluten/beer. usually i can tolerate this ok once in awhile but this time it has fucked me up. i have about 4 papers due by tomorrow night when my semester ends and since i can not sleep, im pretty sure i will fail all my classes. one of my final papers is on the rise of food allergies specifically fixating on gluten intolerance. maybe i can at least finish that one. heh. without sleep my brain just wont work though. no position i lay in helps ever. i try to roll over and get some relief for a second but as soon as i try to sleep it cramps up and my thoughts fixate on it. completely unable to drift away. this is the most fucked up hell. i want to die

  107. I finally got fed up with trying to find a diagnosis via doctors and turned to a few friends who were experiencing similar problems. One even went through all of the testing for celiac and her results came back as a false negative. I got really tired of every doctor seeing my symptoms as disjointed and unrelated. The final straw for me was when one doctor told me I was allergic to my own sweat. My symptoms include:

    Peeling palms
    Eczema
    Mouth sores
    Cold sores in my nose
    Chronic anemia
    Cavities
    Chronic yeast infections
    Weight loss
    Constipation and diarrhea, with little in between both extremes
    Gas
    Stomach pain/cramps
    Depression
    Brain fog
    Sleeping problems
    Skin rash on legs
    Bloating
    Intense stomach gurgling (embarrassingly loud)
    Abdominal vibrations

    I noticed a difference in my symptoms within a couple of weeks of going gluten free. When I explain my symptoms now to doctors, they all seem to have no problem agreeing that it’s celiac, and they call it “non-test confirmed celiac.”

  108. I’ve not been diagnosed as of yet but know i have a gluten allergy. My question, has anyone ever experienced burning of the entire body (skin), mouth, face, arms, thighs, etc… also cold/hot sensitivity. It’s been 30-60 degrees and i’m still freezing at times and get chills. In the summer Im over the top hot anytime it’s over 70. My thyroid has been checked and according to western medicine it’s find but low according to alternative medicine.
    I’ve been in severe burning pain of my skin, bottoms of feet and fingers for 15 mos and been tested for everything! I pray next week my GI doc has something to say that will give me a better outlook.

  109. Gosh, I’ve just recently started gluten free as a self diagnosis experiment to finally get down to all of the symptoms I’ve been having for YEARS, since I was 12 to be exact.

    -IBS starting at 12
    -Cystic Acne “necessitating” various harsh topical treatments and then birth control and accutane
    -Diagnosed with Hypothyroidism at 19 (fatigue, brittle hair and nails, low sex drive, cold intolerance, cold hands and feet all the time, constipation)
    -Unexplained cavities
    -Tooth sensitivity
    -Sour Stomach
    -Anxiety
    -Panic attacks when really stressed out
    -Depression
    -Mood Swings
    -Brain Fog
    -Difficulty concentrating
    -Difficulty being articulate
    -Crying spells
    -Fatigue
    -Vitamin deficiencies (low iron, vitamin B, vitamin D and who knows what else)

    I’ve been gluten free for almost three weeks and already more than half of those have dissipated. I’ve been seeing my family doctor, dentist and dermatologist for years and NONE of them have suggested gluten intolerance or will even entertain the idea. Ridiculous. I’m going to get tested one way or the other and get the appropriate treatment. I could even been diary intolerant as well, who knows.

    I’m just thankful I’ve finally found out what has been making my life so difficult. On to the next chapter :D

    • I forgot a few more..

      -Bruising
      -Malodorous stools and flatulence
      -Hair loss
      -Tingling in hands and feet
      -Unexplained weight loss
      -Canker sores

        • They recently have begun to suspect celiac with me , and I was just wondering if anyone knew how long the symptoms would last ..I have eaten gluten free for two days now but I still feel all the symptoms intermittently throughout the day ..when can I expect an end to this if it is celiac related ?

          • Hi Anthony,

            Just like Gluten Dude said everyone is different. With me it was about two weeks. Have you discussed this at all with your doctor? Do you think you have symptoms of celiac disease or gluten intolerance? It would be worth doing some research since celiac disease would require complete gluten elimination (even from trace sources) where as for me, again everyone is difference, with my gluten intolerance I find avoiding all general breads, pastas, baked goods, snacks etc have helped but I can tolerate trace amounts in soy sauce and other condiments. Anyways, there’s A LOT of information on the web so take a crack at it!

            Laura

  110. Hi Guys,

    For those of you that haven’t been formally tested, I strongly recommend it. My Gastroenterologist says that 10% of society are Coeliac and a vast majority more are gluten intolerant. He explained it quite simply, stating that through time, man was a hunter/gatherer, who ate fruits/vegetables and meat. It was only through modern times that human beings started learning to mix grains, process foods, make bread etc. etc. In addition, genetically modified foods, additives and preservatives have added to higher rates of allergins.

    It starts with a simple blood test (coeliac serology), that doesn’t actually tell you that you are indeed a Coeliac, but provides an indicator that you may be, by testing specific antibody levels that are commonly elevated in those that are generally Coeliac. It is important to note that you DON”T stop eating gluten in the lead up to the test, as it will reduce the levels and won’t provide an accurate indicator. Should the test show elevated levels of the antibody, then a biopsy is required to confirm the diagnosis, which is the ONLY way to confirm the diagnosis. It is a simple gastroscopy that is done via a tube down your throat to the small intestine via a local anaesthetic. The procedure itself takes approximately 20 minutes. The Gastro can usually tell straight away by assessing the state of the villi or other damage in the smaller intestine and trachea (i.e. a hole and no/flat villi).

    Major damage quite often requires prescribing both a strict diet and steroids initially. People need to adhere to a strict diet in order to be symptom free and in ‘remission,’ as there isn’t currently a cure.

    Please don’t diagnose yourself, get a test. I love the fact that most restuarants and supermarkets now supply gluten free options, the trend to go GF is of huge benefit to people like myself and others that are either Coaliac or intolerant. The big annoyance I have is with people who tell me, someone with both Crohns and Coaliac disease, that they have it following their own self-diagnosis, without being tested. My specialist is hugely in favour of most people cutting gluten products (wheat, grains, barley) and starchy foods from their diets, as they aren’t natural. He thinks the Paleo and elimination diets are the best things since sliced bread.

    Intolerances and allergies to other foods also provide the same symptoms. You might think you are allergic or intolerant to gluten, but may actually be allergic to something else that could end up being life threatening and putting yourself at risk.

    The blood test is the first indicator, so please get it. It is worth the money to get it done! If that comes up as a positive indicator, please change your diet.

    Here in Australia, we have a great support network http://www.coeliac.org.au/ that you can research and you don’t have to be a Coeliac, you might be intolerant. They don’t care in that respect, as they are here to help and provide a support network.

    I’ve most of the symptoms people have posted at some time or other. I’ve ruptured by colon and had a triple fusion/2 disc replacement due to the Crohns and symptomatic issues resulting from Coeliac disease. I meet people who use it as an excuse to give up on life. Please don’t do that. We are the masters of our destiny and only have ourselves to blame if we go downhill due to not taking the steps necessary to make changes in our life to accommodate. My specialist tells me that most people who are very strict and don’t deviate, go into remission and life very normal lives. I’m on my way to it! I take Somac medication daily, Vitamin’s such as iron, magnesium, B12, D, lysine, B2, C, cod live oil, probiotics, anti-lactose (absorption) and so on…. It isn’t voodoo, as I’ve gone from extreme deficiencies and anemia, to being on the low side of normal (but still normal!). I have found substitutes for almost everything I love (except beer – tastes like carbonated guiness, but there is some great wine out that that is GF and even has low acid levels!)…

    I relapse and do have symptoms now and then, feel sorry for myself whilst in rehab following back surgery, but guess what? I’m alive where others are battling cancer, dementia or something much more sinister. I am back at Uni studying full-time at 41, work 50 hours a week or more in a stressful high level job, raising teens (and a husband), swim, walk, dance and am about to get into strength training. I refuse to let anything define who I am and believe it really is a state of mind. I only got to this place through the support of others with the same issues and seeing a close friend battle MS and her third bout of cancer.

    The Coaliac society and this website built by the amazing ‘Gluten Dude’ is absolutely wonderful! The links, helpful tools and ‘rants’ are just the trick!

    Please go have the test and if you are diagnosed already as either Coeliac or Gluten Intolerant, don’t make excuses, go GF asap. You’re body and your loved ones will thank you for it :)

  111. Hi Guys,

    Over the past ten years I went from a slim, relatively fit individual to somebody who gained an extra 100lbs plus.

    I craved fast food and sugar and became depressed, agitated and racked with anxiety attacks.

    In 2012, I started waking up in the middle of the night with feelings that my heart had stopped beating and followed by a general feeling of unwell.

    By the end of the year I was laid up in bed for months with a chronic burning pain across my chest, palpitations, dizziness. I thought I was having a heart attack. A Doctor was called and I was diagnosed with severe anxiety and acid reflux. I was prescribed medication for both. I was very skeptical of his diagnosis.

    After collecting my prescription I was confined to bed and ended up in A&E three times. Blood work, ECG’s, Heart Monitor, Chest X-Ray all showed up nothing. By my third visit I began suspecting they didn’t believe me and when they suggested it maybe a virus I decided to give up and do my own research. I was prescribed antibiotics and sent on my way.

    My symptoms became worse over time, heart racing, undigested food in foul smelling stool, pain in limbs, pain down the inside of my left arm, feeling of numbness in my left arm, stomach bloating, rash on arm (this came a lot later accompanied by itching skin) and feet and a chronic burning sensation in my esophagus.

    To cut a long story short I went back to my GP and asked him to test me for Coeliac. I was tested and my results came back negative. Well this is what I’ve been told anyway. I’ve yet to see a copy of the results. He has refused to test further.

    My sibling have Coeliac and so has my aunts and uncles so I thought I’d try the diet anyway; what had I to lose.

    Within a week, my late Dad almost collapsed when he seen the difference in my complexion. I was able to walk a straight line without wanting to pass out and my racing heart and subsided! My stool did not fully return to normal but overtime it did improve.

    I have yet to be formally diagnosed but through my own research I am fully aware what my problem is.

    Unfortunately, after the antibiotics I was prescribed for the mystery virus the hospital had told me I had; I ended up with a Candida Infection.

    My tongue is now white, fatty, with a split down the middle.

    I’ve cured my own health with probiotics, acidophilious and Vitamin B12.

    Any tips for the white tongue would be helpful please.

    • I have done alot of research and reading to try and find information on my own about gluten/celiac and the next battles I’ve had,and am still having trying to heal myself ( as ive had absolutely no! luck or help with any doctors, quite the opposite actually ) just thought i would reply to you because sitting in front of my lappy for hours and hours reading what all the people (just like me :) have gone through and how they feel,symptoms etc, has been the greatest help to me,,,(all the laughing and crying i did amazed that i am not after all crazy or insane like all the people i dealt with made me feel) thought i could suggest you read about celiac and the possible connection to yeast intolerance. since i have been gf ( for just a year ) i have become lactose intolerant and yeast intolerant and am still trying to heal my insides,,,,quite a battle as i cannot seem to get past the depressing part of giving up the rest of the things i love,,,like coffee :c sugar etc. blablabla until im better. anyway maybe you too have a problem with some other things that may be from the damage that has been done to your body from gluten…? good luck with your tongue! and thank god for all the people telling their stories on the internet.

  112. My gluten story – hope it’s ok that I didn’t just list my symptoms, but gave some context…..

    I was talked into getting more life insurance, and they said they would even send someone to my house for the blood test. I was denied for more life insurance based on the blood test. My doctor called me in and said I had high liver enzymes. In his words, I had “the liver of a severe alcoholic.” He asked me if I was “drinking behind the pews.” At that time I would have the occasional glass of wine – literally maybe two or three times a year.

    So began the investigation.

    The doctor sent me to get an ultrasound, (where I heard the tech gasp. This turned out to be a giant cyst on my ovary, which later burst and I heard nothing more about that.) The doctor told me I had fatty liver and needed to lose weight. So I went low carb.

    (I don’t know if it was at this point or another point that my eldest daughter had discovered the Dr. Bernstein diet. But I remember vividly joining her in this for a short time so she could get a free week. I felt a rushing thrill of health run through my body, Which I assumed was from the vitamin B shots they give you. Wow. That was amazing. Didn’t know it was possible to feel so good. Obviously, I wasn’t eating gluten then!)

    After a few years of trying to get my liver enzymes down, (and getting heartburn, acid reflux, bloating, stomach aches, early menopause, migraines, hair loss, constipation, brain fog, tingling in my feet, mouth sores, not to mention anger issues), I went for a CT scan and a bowel scan with no conclusive results, I started looking on the Internet for my symptoms. At one point I thought I had cervical cancer. But nothing was conclusive. I see now that my body also had major inflammation issues, as compared to my normal now.

    I had been planning to go overseas to teach, first just for the summer, then full time. I quit my regular teaching job, which was actually stressful because of a crazy co-worker (who thankfully was eventually fired). I enjoyed the teaching part but the admin was micromanaging which was also a bit stressful. Two other major stressors happened in my life around this time. I was unhealthy and could not lose weight.

    I was concerned about my liver enzymes because I wanted to pass the medical testing overseas. Two weeks before I left, though I had been low carb for some time, I didn’t eat breakfast before church and therefore was tempted at coffee time after church. The only things to eat were an Italian bread/cake, apple turnovers, and pound cake. I went overboard and ate generous portions of everything,

    Later that afternoon, I felt literally poisoned. I was shaky through my whole system, and had severe pains in my gut and stomach and liver area. It was so bad I thought I was literally dying and I thought I had eaten poison. For the next few days I ate nothing but almonds and a huge glass jug of organic apple juice. I wouldn’t even drink the tap water. In the meantime I scoured the Internet for my symptoms.

    Somewhere, somehow, the word bread came up and my mind went back to the Sunday morning I had gorged on bread. Bingo. I immediately went gluten free, and went for a blood test before I went overseas. My liver enzymes were much much lower in just that short amount of time!

    When I took the test overseas, I had ‘mild fatty liver’ but I was ok to teach. Phew!

    While overseas, I continued gluten free and what a difference. I even had a period after five years of no periods (assumed menopause), when I was home in the summer. The doc freaked and sent me to a gynecologist but I knew I was fine. It was the gluten that had stopped my menses, and the gyno gave me the all clear, but of course the gluten connection was ignored.

    After two healthy years of gluten free, in which I didn’t want to take gluten even to get a blood test, I was home for the second summer and decided spontaneously to try some white bread. (Didn’t think that, after two years of being so healthy, it could make a big difference. I was not doing it to get tested, because I thought you had to eat gluten for a few weeks before being tested. It was just a little experiment.) I ate one and a half large fresh baked hot dog buns. Big mistake. No little experiment. I had horrible reactions. For weeks.

    It was amazing, because it was like a revelation to me. I felt sudden rushings, like instant rage. I was alone, there was no trigger, but I felt all the physical indicators of rage. My blood was pounding through my body, and I was under an overpowering helplessness of irritation. I also felt a disconnect, a shift in reality very hard to explain. Like part of me was very far away. At the same time, I was experiencing powerful recognition of these symptoms. I was very familiar with these feelings, they had come over me before –yet not so clear cut and defined. Also, because I was alone without distraction and these reactions were far more lucid than ever, I could identify them and look inward instead of lashing out at some partial scapegoat. I had an amazed and even thankful realization that these all too familiar feelings were so heightened as to be recognized as NOT BEING ME but caused by eating gluten. For years, I had just accepted this was ME. Thank God, it was gluten.

    Of course I still accept responsibility for what I did in my various rages over the years, but perhaps few can understand the huge relief to be able to have that clarity and knowledge – it is a HUGE identity milestone. Yes I have anger issues, but the normal me can handle them, I have discovered. The glutened me is already at 9.5 on the scale and has no reference points for anything.

    A week later I was still having symptoms, shakiness all through my blood system, and thought it was maybe too late but I should get a blood test. I honestly didn’t think it would register by this time, but I was still having major symptoms, going through a whole range of different severe reactions, neurological and physical muscle pain as well. I went for the blood test, and though the normal range for a positive reading of TTG would be between 4 and 20, I was at 99. If it were 100, studies suggest that a biopsy is not needed, that it is a definite diagnosis for celiac.

    Now, my doctor had been only humoring me by allowing me to get the TTG test — he was surprised when it came back positive, and yet he did have the grace to be embarrassed. All those times I had mentioned gluten he basically politely ignored me and kept bringing up fatty liver disease.

    Even after the TTG test was positive, the doctor said that high liver enzymes were much more indicative of fatty liver disease, as if to excuse his not considering that the liver enzymes were a symptom of celiac. (Just a case of CYA -cover your a**.)

    The white bread symptoms drove me crazy for another four weeks. I had severe muscle aching in just one area, my whole system was on fire and I was emotionally unstable. I COULD NOT STOP MYSELF from severe irritation and rage. The slightest thing could set me off.

    Since that time, I have been even more sensitive to gluten. While overseas, I hadn’t really been so careful about cross contamination or small amounts of soy sauce for example.

    However, since the white bread episode last summer I can’t have the teensiest amount of gluten. For example, I had the flu and was eating nothing but oranges and water for two days, when I suddenly and inexplicably felt gluten symptoms! I was already almost paranoid about eating gluten and it was like a phantom glutening or something until I remembered that I had taken two Advil. I googled it. And sure enough, the made in Canada liqui-gels had a component in the gel coating made from wheat. Such a minuscule amount is all it took to make my heart beat and my blood race and rush.

    About the time I got the blood test, one of my daughters was on the band wagon to get me diagnosed with BPD. Borderline personality disorder is the full name. She had just got her masters in clinical psychotherapy, and announced in an email to the whole family that she was cutting off all connection with me and that I could no longer see her children, until I went to a counsellor to get a diagnosis.

    Well, besides the fact that I lived overseas in a crazy culture where counselling is non-existent, I was in a catch 22 situation. I could not inform her of the gluten issue because she had cut off contact with me and she would not likely believe me anyway.

    Thank God there were other anecdotal reports on the Gluten dude site and others of the crazy effects of gluten. My husband was able to believe the truth of this (thank God for you all) and to eventually tell my daughter about it, but she doesn’t seem to accept it. Not a big surprise. I’d love to have a talk with her, but for now I can’t.

    We need to have this gluten issue addressed, and things have to change. Someone has to get some research done based on all the anecdotal evidence. That is why I’m writing this. ( I do know it is beginning),

    Also, I know this is kind of crazy too, but my father just died last summer of non-Hodgkin’s lymphoma. He was convinced it was due to monsanto and roundup, which may well be a factor. But he would not listen to me about gluten, let alone be tested, and now he is gone. I am left wondering if there is a gluten connection.

    Also, even crazier, my brother died three years ago of a brain tumour. No one knows what caused it, but to me, given that there are so many varied symptoms, I think that gluten is a poison for some — our bodies are set up to let us know about things that aren’t good for us, and we must listen to our bodies. If we are just tolerating gluten and then we go off it, knowingly or unknowingly, our bodies feel better for a time, and then go into alarm mode once gluten is reintroduced.

    So, I think my mother thought I was crazy, and I know Irish heart and others are like me that they think gluten is responsible for many things and symptoms are everywhere—so some may think this is too ‘out there’, BUT— my brother said that when he had his first seizure the last thing he remembered was sitting on the rock wall and eating a sandwich. Those words came back to haunt me later: eating a sandwich. Could it be that his body was trying to tell him something? Could it react that fast? All those gliadins or whatever you call them rushing through his body and that was it! I’ve heard that your own antibodies attack your brain because there is some component of the brain that mimics gliadin. (Ok, it’s a bit far fetched but we don’t really know everything about the issues and gluten does cause a myriad of seemingly unrelated symptoms.)

    We have to tell our stories because the medical profession needs to be more informed somehow! And of course the psychotherapy profession as well. And others need to find answers and know what could be going on with their health.

    And actually, I feel that the more times you give your body temporary relief from gluten then reintroduce it, your body rebels, more each time. It’s the antibodies that attack your own body- they are on increasing alert. And I can see how that has been happening as I would go low carb but not on a continual basis, and with no thought to gluten originally.

    Sorry not very concise. A lot to get off my chest. Thanks for reading.

    • Wow Kath…thanks tons for sharing your story. So sorry for your losses. Stories like this is why I created this community. We need the platform. We need the passion. (Dang…aren’t we a needy bunch ;) )

  113. Celiac disease is all over my family . My siblings two out of four of my own kids uncles cousins. It’s everywhere. It was after my eldest daughter was diagnosed in her twenties that she started to nag me to get tested. She is almost positive I have celiac disease. My symptoms were joint pain brain fog at times , abdominal pain but only sometimes. Persistent diarrhea . This was really becoming a problem so 2009 had blood tests that came back clear went on to have an endoscopy. The results said that I had patches of flat villi but not enough to warrant a celiac diagnosis. I was told to eat normally and sent on my way. Almost a year ago my gi system once again started to go into meltdown. The diarrhea was not up to 7 times a day. Fatigue joint pain and severe pain in my side under my ribcage and in my back over my liver. Docs assumed it was gallbladder but this came back ok. My liver function was down for no apparent reason and the consultant thought I may have celiac disease after all. I continued to eat gluten and actually had to be hospitalized in August with pain vomiting and reduced liver function . After a week when I was basically not eating docs said I had gastritis severe acid reflux. No explanation for my liver or my by now excruciating pain. Sent me home with painkillers and meds for acid reflux. Finally had second endoscopy. The doctor on the day said my stomach was in a bad way. Visually he said my villi looked fine but that this meant nothing. He told me he had taken biopsies and would let me know. Not having to eat gluten after the test has been heaven. Pain has finally receded in my side and back. Diarrhera gone for the first time in a long time. No bloating and no joint pain. I fully expect to be told though my biopsy is negative again so I tried gluten two days ago. I didn’t think I would have such a violent reaction as I was only weeks off if it but all hell broke loose foe two days till it went out if my system. I finally have the appointment to get my results but as I say I expect to be told I’m not celiac but my body is telling me otherwise and I will joining my kids on their gluten free life regardless.

    • Hi Katie
      That pain in your side under your rib cage is your spleen, a major part of your immune system. It stabs me every time I’m glutened. Also I got pain in my lymph nodes just under my ear this last time.

      I asked another celiac when I met her last week, if she got that pain in her side. She said yes, that’s how she knows she’s been glutened.

      I want to avoid gluten just for that reason. The pain woke me up last time.

      Gluten is evil in my opinion. Everybody will be affected one way or another by it eventually, whether mildly or severely, whether in the gut or the nerves. Stay away!

  114. ive been really ill last few years mouth sores where they thought i had mouth cancer, stomach bloating, dizziness feeling sick passing really bad wind, extreme back pain that would have me in tears, skin so irritated that i scratched till it bled, cold night sweats, joint pain and extreme pain under left rib and tiredness, they gave me a hysterectomy just before xmas and lo and behold still had all the symptoms, my mum said i was diagnosed aged 2 with celiac, but they checked my vitamin levels and said i cant have it but i do have low vitamin b12, low iron and low folic acid, for the past week ive eaten nothing except drink water and ive felt the best i have in a long time, so yesterday i thought id test myself n eat something and i was ill after and today, at my wits end but if my vitamin levels are ok could they be wrong im wondering thanks for listening to my rant

  115. This site has been a great source of information.
    I am 39 years old and have only just realised that I probably have celiac disease. I am going to my doctor this week.
    I did the 23andme test and had both the genetic markers for celiac disease with a much higher than average risk of developing it.
    From my teens I had recurrent skin rashes on my calves, and other areas with small bumps appearing which would itch unbearably then burst and often bleed. I was told it was eczema, which I now feel is not the case and that it is the celiac rash. It came and went but was a constant problem. I didn’t bother my doctor with it and wasted time on different moisturisers and creams which had no effect. I thought it was just my skin type! I went from being a highly energetic adolescent to an exhausted one. I am self employed which has made coping with tiredness easier, but It is such a pity I wasn’t diagnosed earlier in my life. I have thin hair and nails. I have always been slim, but gained a few pounds in my late 20′s eating a carb rich diet living abroad. I am 5 foot six and 120 pounds. I decided to give up gluten completely 3 months ago. The results were dramatic, I always felt bloated even though I am not overweight. My stomach is now completely flat. My skin has been perfect and my energy consistently increasing. I always looked like I was puffy I now look lean. Well yesterday I decided to eat some bread after 3 months gf. Today my rash is back itchy and unbearable! I also have diarrhoea I forgot to add that I never thought I had stomach problems until I removed gluten , I then realised that loose stools are not normal! My pmt has improved slightly. I have never been pregnant and I don’t know if it’s now too late, but I feel saddened that this wasn’t detected earlier. So I’m going to my doctor with my gene test and symptoms and hope I won’t have to go back to eating gluten for a proper diagnosis. I feel cheated by the doctors who missed what seems to me quite obvious symptoms. I have always bruised easily, but I thought that was down to having very pale skin.
    I feel like I was wading through a mire of exhaustion and trying to act like I was ok, as in England people don’t like to complain. At least I can now control my symptoms with diet.

  116. Have compiled my list of resolved celiac symptoms in a Word table – covers just about all expressed in the postings and some, and there is a top five or so I that happens when I get glutened. Other than msg my only other food issues that give me symptoms as if I ingested gluten are seaweeds and seaweed based additives/emulsifiers carrageenan in many dairy, non dairy and other food products. Now another seaweed based additive alginates under sodium or calcium or other alginate and alginic acid in some GF bread and cracker products recently made me ill for weeks until I realized this major GF vendor took out the carrageenan and put in alginates from brown instead of the red seaweeds. See thepatientceliac and glutenfree professor and other celiac sites about these substances.

  117. GlutenDude,
    I have to check out your infographic on these symptoms, and as noted, I do not want to list my array of symptoms that have already been covered by everyone else. I will, however, mention a few things. I ran into a young lady in her mid-20s with Type I Diabetes, who also had been diagnosed with Raynaud’s, but no one had ever tested her for celiac disease – despite the Raynaud’s and a ton of other celiac symptoms. I also was diagnosed with Raynaud’s in my 20s, but did not get my celiac diagnosis until age 54! Dr. Green of Columbia University in his book notes that when he sees a diagnosis of Raynaud’s he immediately thinks about testing the patient for celiac disease. I think this young lady captured (for me) the essence of CD and NCGS (non-celiac gluten sensitivity) when she said, “You know I have just never felt really well ever in my life.” So I concur with the two folks who posted Raynaud’s, but note Dr. Leffler and other specialists make no mention of Raynaud’s in their books (at least their first editions) – so at a clinical level doctors are making different observations and connections, but from an overall clinical/medical perspective no one is collecting this data and compiling it to educate professionals in the odd presentations of CD and NCGS – as for me the GI symptoms were minor and the severe ones came later in life. Even the University of Chicago does not list Raynaud’s but does list scleroderma which often presents with cold extremities ala Raynaud’s.

    The doctors need to get their act together on this, and a #1 is stop denying NCGS exists and keep in mind patients can test negative today for CD and be positive tomorrow. There is this classic case in Ireland where a lady in her 50′s presented as if she had celiac yet antibodies and biopsy were negative…five years later she was positive on both counts! This begs the question can you be GS before developing full-blown CD…right now the “experts” say no. I think they are wrong. My doctor is not big on confirming with biopsy as she notes folks like me would never knowingly eat anything with gluten with our new sense of wellness, however, there are serious things like lymphomas that are associated with CD that need to be considered.

    If I could apply for a grant, I would want one that collects data on all the body systems impacted data and associated symptoms from CD and NCGS folks. I think my parents may have had one or the other of these when I look back at their medical histories and the way removing gluten from my elderly dad’s diet eased his back pain and arthritic symptoms tells me I may be correct.

    Can we ask folk’s this question next: Of those diagnosed with CD or NCGS what is the family history of cancer and types of cancers. There is a history of kidney cancer in my family, and I have a good friend who I know has CD or NCGS who also developed kidney cancer. I was talking one day to a doc (in the GF aisle at Wegman’s) who trained under Dr. Leffler, and I noted feeling there may be other cancers linked to gluten problems other than the known ones. He denied any evidence. I asked if we are collecting the data from cancer patients and testing for CD or checking for gluten-sensitivity symptoms with a trial GF diet – so how can you conclusively say this – especially since elevated kidney function tests (see U Chicago List) are associated with celiac disease? His wife said, “She’s got you there.” My elevated creatinine for 5 years that with our family history sent me to a kidney specialist at Dana Farber miraculously went down into the normal range after my diagnosis and GF diet.

    Since people mentioned eye issues resolving, since my 20′s I had Thygeson’s – an eye disorder thought to be autoimmune. As soon as I went gluten free the low level of inflammation that remained in both eyes cleared up after like 30 years with this issue – that granted had not flared up severely this past decade but was pretty severe in my 20′s, 30′s and early part of my 40′s such that I could not even wear mascara – never mind contacts. Recently, I found research in which Thygeson’s is associated with the same gene responsible for celiac disease, Type I diabetes, and other autoimmune disorders. My dry eye cleared as well.

    What else unusual or to comment on with the array of symptoms folks are listing. Asthmatic bronchitis as a kid that reared its ugly head again last winter placing me on an inhaler until it cleared. Hereditary anemia (spherocytosis) with family history of gallbladder disease. Of yes. I too thought I was allergic to yeast and had severe intestinal candida (after some antibiotics) that led to heart palpitations, facial acne, eczema to realize it was likely the celiac causing this issue. Whenever I hear anyone in the bread aisle looking for bread w/o yeast I tell them to think gluten instead and be tested for celiac. Now I know the reason I likely reacted to brewer’s yeast (loaded with gluten recovered from the beer brewing process) when I was a teen having allergy testing.

    My final note – watch out for makeup lipstick, hairspray, other products that may have gluten as well as toothpaste and mouthwashes…and watch for the later two having alginates or carrageenan – those seaweed emulsifiers that cause many of us gluten ingestion symptoms. Not only is this crap in toothpastes but can you imagine – in hard candy, sprinkles (though many have removed it) and lubricants! The most common place to see carrageenan is in ice creams and non-dairy milks – though Whole Foods has removed it from most of their 365 brand; alginates are starting to crop up in soups, salad dressing, and GF breads and crackers.

  118. Oh yes, the shortness of breath (SOB) noted by many dissipated for me when my belly (small intestine) started to heal so I was not as swollen. The swelling clearly impeded getting good breaths with fully expanded lungs. Kind of like the pregnant belly syndrome.

    Some folks noted wanting a query of what symptoms disappeared or improved. This is often tied to whether one has celiac disease or non-celiac gluten sensitivity and how long one has suffered with each and with each symptom AND the system that is impacted. In my experience, things like gas and swelling and stool/bowel movements and joint pain turn around fast – within days to a week or two while neuro issues like pain and numbness can take 1-2 years to resolve though supplements and a good diet can help to address these a bit faster. Also, there is a great variety in the time to recover one’s lactase producing cells (6 months to 1 year is common) to once again be able to eat dairy products.

    The other thing is you do not want people responding who are not following a strict gluten-free diet else symptoms will remain unresolved. With gluten and many of these symptoms, it is an all or nothing endeavor.

  119. I have been itching all over my body for the last 8 months going on 9, I have welts or hives don’t really know the difference but theyre itchy too and theyre all over, last semester I had to take an academic withdrawl because I couldn’t sit still let alone work on anything, I’ve been going back and forth from doctors to specialists from Dermatologists to Allergists, I’ve gotten a biopsy nothing, allergy test for environmental allergens nothing, patch test nothing, anal itching and in my inner thighs are the worst, I’ve gotten treated for Scabies twice and medicated heavily,the meds make it manageable but it seems like lately theyre not working anymore, I’m so desperate and I can’t live like this anymore, by reading some comments I’ve seen that it could be a various of things and I suffer from migraines and they’ve been getting a lot worse and closer together, I didn’t think there could be any correlations until I read some of these comments, PLEASE HELP! I don’t know what else to do or where to go from here, also I still don’t understand what celiac disease is

  120. Firstly, have you been diagnosed with celiac disease or non-celiac gluten sensitivity (the latter is often self diagnosed)? If so, you need to see a nutritionist or dietician well versed in these disorders to get you on a strict gluten-free diet ASAP and work to educate yourself beyond this in terms of where gluten is found aside from clearly wheat, barley and rye based products. There are lists all over the net. He or she may also recommend an elimination diet as you may have permanent or temporary cross sensitivities to dairy, soy, corn or even clean oats (no wheat contamination). Stay away from additives and preservatives and highly processed food products as these muddy the waters to feeling better and recently many are noting seaweed and seaweed based additives emulsifiers of carrageenan and alginates alginic acids are causing folks gluten like symptoms.
    You need a good general non specialist physical exam with labs to make sure the itching is not from something underlying that is more serious. If you are not on a GF diet and should be then this is a #1 and with the assistance of a dietician work on an overall elimination diet. Have you been screened for candida in your GI tract? Many with gluten issues have an issue with this that can also cause itching and skin issues. A knowledgeable doctor and dietitian will also check for vitamin and mineral deficiencies and start you on supplements Including probiotics to address intestinal good flora issues and a nutritious diet to address this. It takes a clear plan and patience to address the many symptoms of Celiac and gluten sensitivity some of which may clear in days or weeks while others may gradually clear over a few years time with a strict gf program.

  121. I have been struggling with a lot of symptoms since 2006, wanted to see if I could get some feed back. See if they relate to gluten

    Symptoms-
    Heart palpitations, shortness of breath, numbness on arms and legs head, fatigue, tired all the time, weak, passing out feelings all the time, anxiety, panic attacks, hot and cold flashes am a male, joint pain, always getting flu like symptoms, hair falling and thinning, thyroid levels off but not all the time, low vitamin d levels, miss heart beats, stomach cramps left side under rib cage, always hungry never feeling satisfied, brain fog, a cold tingling up spin feeling with palpitations and short breath and passing out feeling all together. Many many more symptoms

    • Nuni – we’re not medical professionals. You need to go to a doctor and get tested. It could be anything, including diabetic’s or heart issues etc. Too many people self-diagnose without getting a professional opinion and firm diagnosis; and if you have another problem, could make it worse for yourself.

  122. I have been lactose intolerant for years, so already avoid dairy. This past year I have been sick constantly and in and out for the ER and doctors offices. No one can find anything wrong so they always want to give you anxiety meds, which I will not take. I have all the symptoms of Gluten issues and have been trying to avoid bread because my first thought was wheat. I just had a blood test for Celiacs but results arent back yet. I just seem to be getting worse so need to try to stick to a gluten free diet. Here is a list of all the symptoms I have had lately from the most experienced (every day) to the least.
    Dizziness/Vertigo-unexplained
    gas/bloating
    stomach pain
    Brain fog (almost like feeling drugged-everything feels heavy)
    headaches
    diarrhea
    Fatigue/weakness
    Anxiety
    Eye Blurriness
    racing heart after eating
    short term breathing difficulty (feels like trouble getting air in)
    reflux
    weight loss (Im underweight for my height now)
    nausea
    joint pain
    low blood sugar
    more food issues with corn-soy

    I am finding trying to eat gluten free very difficult.

  123. I was finally diagnosed with celiac about six months ago and my symptoms are worsening after going gluten free:
    Dizziness/light headedness
    Bloating
    Stomach pain
    Severe Brain fog
    Diarrhea
    Extreme fatigue
    Muscle weakness
    Pounding heart after minimal exertion
    Shortness of breathing
    Throat tightness
    Indigestion
    Nausea
    I’m almost unable to work at this point because the fatigue and dizziness are getting worse. What scares me is that my doctor diagnosed me with chronic fatigue syndrome last week (maybe he is just sick of seeing me) because I’m not better after being gluten free for the past six months. I’m not blowing off his new diagnosis, but wondered if maybe I’m just not patient enough with my GF diet. Due to stomach pain, I’m only eating once per day which is presumably contributing, so I’m not sure what to think. God help us all.

    • Hi Andrew,

      I was diagnosed 4 years ago and my symptoms are similar from time-to-time.
      Have you spoken to your Gastroenterologist? I go to mine when I’m having a lot of problems that my GP can’t help me out with. He’s the specialist.
      CFS-like symptoms is common for Coeliac’s, unfortunately. It sounds like you are having allergic reactions to other foods also, so might be worth a trip to an allergist who can test you.

      I was continuing to have a lot of symptomatic issues after going GF and have learnt that a lot of the food, whilst it might state no yeast, wheat etc., it isn’t fully GF. Vitamin deficiency is a major issue for us also, so taking supplements/vitamins is a great idea. You need to keep in mind that it can take up to 3 months or so to see an outcome once you start taking them.
      My Gastro and GP have told me to stay off Soy and dairy products also, as I was having a lot of the symptom’s you mentioned recently, with it getting worse by the day. The intolerances build up in your system and going GF sometimes highlights the intolerances to certain food groups you have. Most Coeliac’s (if not all, are dairy intolerant – both lactose and the lactase protein). I use Almond Milk and Rice Milk products if I want to have a coffee.
      Start a ‘food and reaction’ diary, where you can write down what you eat/drink, when and what reactions you have. You will start to see a trend and ‘triggers,’ which cause it. This will also help your GP, Gastro or Allergist help treat you better.
      Go through the cupboard and really look at the ingredients contained in the products you have on your shelf.
      Another thing to consider, is skincare, shower gels, shampoo’s and conditioners. A lot have gluten in them, believe it or not. Try going as organic as you can. The pharmacy and most supermarkets sell GF products and allergy-free products that you can use. Just because we don’t put it in our mouth, doesn’t mean we don’t absorb it through our skin.

      In summary:
      1. See your Gastroenterologist
      2. Start a food diary to determine what you eat, when and what reactions you have, along with severity (for your GP, Gastro)
      3. Eliminate soy and dairy (including lactose-free!)
      4. Review what is in your cupboard
      5. Get a full blood test to check vitamin levels and maybe take supplements to help raise your levels
      6. Review skincare products (shampoo, conditioner, shower gels, moisturisers etc.) and remove products with gluten in it
      7. See a naturopath or dietition that specialises
      8. Join the coeliac society (have a look online for your country of origin)

      Finally – I’ve found following a strict Paleo diet has also helped. If you have an android or iPhone, there are loads of Coeliac and Paleo app’s that have shopping lists, recipes and FAQ’s there to help. Paleo 101 is one of them, mobiCeliac, GFEC, Coeliacs Society etc etc.

      Good luck!

  124. Andrew I ditto Nate’s remarks. You may need to have a nutritionist well versed in celiac and GF diet help with an elimination diet that will likely involved low carbs, close to the Earth foods, no processed or foods with preservatives. As I noted above, avoid carrageenan, alginate, kelp, and other seaweed additives and compounds found in products as many celiac folks respond to these as if they were gluten…and numerous non-dairy and dairy products are loaded with carrageenan – a known GI irritant. Whole Foods has taken it out of many of its soy and other non-dairy milks – and there are other manufacturers who are aware and have eliminated it. Good luck – keep us posted on your progress!

  125. Thank you Sharon and Nats,

    I have seen a gastroenterologist off and on with my third GP in four years. I’m REALLY hoping the most recent diagnosis of this debilitating disease (CFS/ME) is wrong and it’s simply a lack of nutrient intake (as I haven’t been eating enough for over three years) coupled with gluten intolerance damage done to my intestine over the years. I don’t mean to have anyone make a diagnosis on the spot, but was wondering if anyone had positive results delayed this long after going GF (about six months). I suppose I can do more for myself and my health, and I will (and thanks for your time and advice). I think I’m just very scared right now because I’m missing a lot of work and taking a financial blow while my wife is due with our 3rd child in June. I just turned 31 and I don’t have any financial support elsewhere, so I need to figure this out if possible. I poured all my time and savings in going back to school the last few years, but I no longer have the strength or mental capacity to continue. I never thought life would be this difficult. It’s getting harder to stay mentally strong with the symptoms (and I don’t even miss my beers anymore).

    Thanks again! :)

  126. Hi Andrew,

    It is debilitating when you have had that much damage done. I really do sympathise. I found out after rupturing my colon and having the blood test just before the colonoscopy and endoscopy a week later. The lining is gone and I had a major hole in my trachea. It has been 4 years and I can honestly say that whilst I’ve gotten my Crohn’s under control, my Coeliac has been much harder! I work fulltime in a senior executive role, have children and study at Uni fulltime, so when my symptoms are overwhelming, it does impact your working life and income.

    Vitamin deficiencies are a major issue for those with CD, with CFS-like symptoms (. I have 3 monthly blood tests due to being extremely anaemic and vitamin deficient. I take a probiotic before bed and two handfuls of vitamins every morning, along with Somac (to stop the stomach acid) and Crestor (high cholesterol). I’ve been on steroids when it gets really bad.
    My specialist and GP have told me to stay away from anti-inflammatories, codeine other pain medications such as Nurofen.
    If you go to http://www.coeliac.org.au/ you will be able to go to a page with common side effects and useful tips/recommendations that will help you. You are definitely not alone, which is why the amazing Gluten Dude has set this site up (he deserves an award – genuinely!!).
    I would strongly recommend eliminating anything that has the ‘potential’ to affect you and then gradually introduce different foods to see if they were the issue.
    Sharon gave some great advice, look for a nutritionist/naturopath that has experience with CD, as they will help you enormously!
    http://fedup.com.au/ is a great site that you can go to, which will give you everything you need to get started. Having your family do it with you will be a huge bonus. If you have CD, the potential for your children to have it is very high, so getting them all on the GF plan will not only help you, but potentially help them also :)

    I have eliminated the following and started to see major changes;
    - GF free
    - Dairy free (ALL dairy)
    - Soy free
    - Starch free (potatoes, pumpkin, strawberries etc)
    - Removal of foods high in acid (i.e. tomatoes)
    - No banana’s
    - Alcohol free

    I’ve started taking (making sure they are GF!):
    - Vitamin D
    - Vitamin D13
    - Vitamin B
    - Magnesium
    - Iron Melts
    - Calcium
    - Vitamin C
    - Probiotics
    - Anti-bloating tablets available over the counter
    - COQ-10
    - Fish Oil
    - Super Complex B
    - Hair, Skin and Nail tablets
    - Garlic
    - Metamucil (GF and gives you daily fibre that you will be lacking)

    I must warn you that I didn’t start to see a major difference in my blood tests until approximately 3 months, but it is worth it..

    Definitely go to http://fedup.com.au/. The website is a godsend and will help you enormously. You will need to get onto it straight away and not put it off. By eliminating all possible factors, you can then work out what other issues there are that can help you. You might find that you may have other medical issues that are contributing to the pain (like I have with Crohn’s) and through eliminating gluten and other Coeliac ‘enemie’s’ your doctor can then start looking at other issues.

    • Nat, you stated no banana’s and I was wondering why? Since I have gone gluten free bananas and i do not get along at all. I was wondering if there is a correlation or if its just starchy. In the beginning i craved bananas but now they make me so sick.

      • Hi Jenn,

        Sorry for the late reply, as I’ve had a lapse and have been offline in quite a bit of pain and with work/uni, it’s been hard :(

        Banana’s cause a huge upset with my Crohn’s. It’s also high in potassium and I find if I have 2 or more especially, I’m in extreme pain for days.

        Nat

  127. After 10 years of stomach issues, running to the bathroom, throwing up, indescribable pain and finally when I could barely swallow even a sip of water I decided to look into it! After several tests and scopes they diagnosed Celiac Disease! How overwhelming! It could always be worse, it is not fun to eat like this all the time but HEY you find what you like and what you want to eat and it’s not bad at all! The pain is gone I can swallow again and it’s happy to be happy because I also had awful mood swings!

  128. Well as expected I was told that my biopsy was negative for celiac disease. Doc said even with that result he just wasn’t convinced that I didn’t have celiac disease and sent me off for yet another blood test. I am also being checked for Crohns disease but don’t have all the symptoms for that. Doc is pretty convinced its food related and advised that if nothing comes back on all tests to look at food intolerances and said he will advise further on this. So no diagnosis and gastro doctor wants me to remain on gluten again until testing is complete. He is supportive at least unlike my GP. In the meantime I am beginning to dread all foods and eating generally. It’s a nightmare.

    • Katie, there are some case studies out there if you do search with medscape in the search that demonstrate patients with celiac symptoms who initially test negative antibody and biopsy for celiac then years later test positive both ways for celiac. Many docs think one negative test is difinitive but this is clearly not true.

    • Here’s another update. My 14 year old son has just been diagnosed and started gluten free living. It was difficult to tell with him as he has Down Syndrome and not very verbal but I just knew he was in discomfort and while he has only been gluten free for about a week I already see massive improvements in him. His energy levels have rocketed he is in much better humour. Back to his smiley self. Rashes clearing up even his colour is better. So on balance I have just decided to make out home totally gluten free. I am not waiting for anymore tests. .having to go back on gluten was hell for me. That’s three of my four kids officially diagnosed now. As a family we should just avoid gluten . Family gatherings will be easier now with nearly all of us gluten free .

  129. Diagnosed 7 years ago with coeliac disease. Follow strict diet eating out is painful but i have learnt to be pushy and usually speak directly to chef. When going to friends or family I take my own . The longer I have been on the diet I have found if I accidently eat something with Gluten or cross contamination I am really ill.I will start to vomit within 40 minutes of consuming food and this is usually every 15 minutes for 2 hours to the point i vomit blood .I have no control of bowel movement and pain in stomach is so bad I pass out .Stomach then spasms like I have had food poisoning and I have found the only thing I can hold down is weak lemon cordial .I then sleep for hours the positive is I wake feeling fine just drained and it takes a few days for my bowel to function normally.
    The best advice I can give is read everything you intend to put in your mouth, take your own food to friends and family and when eating out be very vocal on it has to be gluten free or you will be sick in there restaurant after all you are paying for it

  130. My symptoms before diagnosis included
    -dark under eye circles
    -fatigue
    -migraines
    -vertigo
    -bloating (right before diagnosis i kept being told had the perfect pregnant belly. nothing feels better than being told this when you are without said bun in the oven haha)
    -diarea
    -joint pain
    -un explained bouts of illnesses
    -extreme mental fog
    -irritable

    Currently- Gluten Free, Dairy Free also allergic to shellfish, cod fish, and grapefruit.

    Out of all those symptoms they only two i still struggle with are migraines and vertigo but not nearly as bad or often as before. As stated above since going gluten free horrible reactions to banana’s-excruciating stomach pains bloating gas and diarrhea

  131. When I was tested for celiac 6 yrs ago after going through a childhood and most of my adulthood with severe depression, exhaustion, ADHD-like symptoms, vertigo, a dizziness that never went away completely, thyroid cancer, and a brain-fogginess that convinced me I had early-onset Alzheimer’s, it came back negative. My doctors said it wasn’t gluten or any other food that was making me sick so they blamed stress. When I told them how much better I felt after cutting out gluten…how all the symptoms melted away…he shrugged and said that it wasn’t gluten. He also gave me a lecture in “the dangers of going gluten free” which basically amounted to “it’s hard.” I sat in my car in the parking lot after that non-diagnosis and cried and cried because I was so miserable, so sad, and so sick.

    Six years later, still gluten free, I’m glad that more attention is being paid to gluten sensitivities that aren’t captured by the traditional tests. I’m also really, really glad that more attention is being given to the neurological effects that horrid little protein can have on a person’s brain.

  132. I too have been finally diagnosed celiac. This is after years of hospital appointments for migraines throughout childhood, anaemia, skin rash, fertility problems, pregnancy complications, thyroid disease, lactose intolerance, kidney disease,stomach ‘bug’ leading to now lifelong gut problem, weight problems, digestion problems, eye problem, weak nails and hair, fatigue, bone aching, bone disease, vomitting, diarrhoea, constipation, restless legs, insomnia. These are the ones I remember but there could be some I have missed as I forget things easily too. I was diagnosed about 5 years ago and doing the gluten free diet has helped although all my symptoms have not yet disappeared I am considerably better. I have good and bad days. I catch any bug going quite easily. Just remembered I get sores in my mouth occasionally and if I happen to get bitten by a bug, I react quite badly, I also get sore throats quite often. I am waiting to see an immunologist for further tests to see if I need immune boosters instead of the immune suppressants I currently take. I just get fed up of constantly feeling ‘unwell’ but not knowing exactly why.

  133. Pamela – Your list looks almost identical to my list before diagnosis – the systems impacted by CD are unbelievable – and not well appreciated by others – which can include MDs not in the complete know about CD and its ramifications. Many of my issues resolved within a year’s timeframe – while other took much longer (neurological symptoms), and these will still crop up with the slightest accidental contamination with gluten – and for me (and many others with CD and non-CD GS) I also get gluten-like symptoms with products that have the seaweed-based additives carrageenan and alginates/alginic acid or seaweed used in canned foods as an additive – and msg. I am fortunate that my issues with dairy have resolved, and I do not have other food sensitivities – so long as I eat grains (like oats) that are clean from field to factory.

    My advise – take a fresh look at your diet – even consider seeing a nutritionist/dietician to work on an elimination diet to identify the problem areas. (Many times once your gut completely heals – issues will start to slowly resolve). If you eat out a lot that can be a mind field of problems – sorry! It sounds to me as if you have not completely healed (I help many CD folks heal by getting them to eliminate food additives – and esp. those seaweed-based ones), i.e. you are getting some gluten accidently in your diet, or things like the seaweeds that cause many with CD to react as if we have ingested gluten, OR you have cross-food sensitivities happening. Stay close to the sun, sea, and earth – save for those pesky seaweeds – fresh or fresh frozen – NO ADDITIVES – vegetables and fruits, organic meats, fresh fish, beans, legumes…avoid all the processed stuff just for 4-6 weeks and see what happens. Avoid the known cross sensitivity foods like corn, soy and those like dairy known to cause issues for unhealed CD folks. Keep to low inflammatory foods – so avoid sugar and alcohol – again just for a trial period of 4-6 weeks to see if it helps. Write down all your current symptoms and then log how you feel with symptoms every day. I still on occasion partake of goodies and an alcoholic beverage but honestly, I feel tons better staying away from inflammatory foods.

    Oh yes, part of the healing process is often to get caught up with vitamins and minerals you may have not been absorbing. For me iron stores were down, Vit D low, B12, etc. Has your doctor recently checked these levels and recommended supplements? Speak with him/her.

    It’s tough – I know – and this advise may not help – as everyone’s body is different. For me the last bastion is my weight – while I have taken some weight off – I am struggling with a “dead” now slow metabolism (likely from years of undiagnosed CD) and keep hitting plateaus – and due to CD and growing older I have never quite gained back my old vim and vigor – which I know would help with getting more exercise going. I am grateful that I am no longer hungry all the time (that ended immediately with the GF diet) – one CD specialist noted the hunger is due to at the cellular level not getting the nutrients needed and the cells tell the brain to tell your body eat, eat, eat. My hypoglycemia (low blood sugar) since childhood resolved. The problem is my body simply adjusts to whatever program I am on and lives on whatever calories I give it without burning the fat off. I have my high energy days and low energy days – though the latter are less when I take my supplements and eat healthy with low sugar, low alcohol, low caffeine and processed foods. I do find that I need lots more sleep than I ever did – and when I fight this – I pay for it with my body’s systems complaining. So get enough rest as it does help with weight loss according to many studies.

    Good luck, Pamela…Check in and let us know how you are doing.

  134. I have all these symptoms and have had since i was 5 years old (16 years ago). but yet when my blood is tested it all comes back normal. i’ve started eating gluten free again and just ate something i thought was fine but turns out it may contain traces … didn’t read the back of the packet until my stomach started to swell up again to the point of looking about 5/6 months pregnant. what do you all suggest… should i demand yet another re test or do you think its something else. I’m getting really frustrated… 16 years is a long time.

    • Hi Shayna,
      Gluten has made me and my son ill for a similar number of years, yet we both tested negative for coeliac. Bear in mind two things: 1) you are supposed to eat gluten for 6 weeks before the test, (we didn’t, because I wasn’t prepared to make us so ill). 2) I don’t know which country you’re in, but certainly in England if you test as positive you get gluten free basic products such as bread on prescription; I guess this means England might set its “positive” threshold fairly high to avoid such costs?

      I know plenty of people who test negative for coeliac but have severe problems with gluten. Whether they are actually “coeliac”, or are just severely “gluten intolerant”, the fact is gluten makes them ill. They all self medicate by avoiding gluten.

      In your case, I would suggest you keep up your gluten avoidance and keep a careful watch on related health issues that might crop up, such as thyroid problems. And whenever you visit doctors, remind them you are severely gluten intolerant and wonder if you’re coeliac, so they know what other things to look out for too.

      It terms of further testing, there’s always the option of an internal examination (which I was offered by the NHS even though I tested negative for coeliac) but this would presumably only show up damage caused by recent and sustained eating of gluten.

      Good luck with it all and keep reading those packets!

  135. So glad to find y’alls site. I’m a 55 y/o nurse w a long journey similar to many of yours. Many of the same symptoms. So many doc, so many “answers”. Finally found a competent doc this year. Found single digit b6/b12/iron/ferritin etc..with varying explanations and plans. (hahaha).Mainly —suppress the symptoms, instead of treat the root cause. After a series of delightful seizures at work ( in ldrshp post), I’ve been at home. Nearly died in October ’13; then discovered dismal labs. Have disease similar to celiac; treat w megavitamins, diet, antiseizure med, and methylfolate — so I can absorb vitamins; & decreased stress. Learning that everyone’s road is unique! Grateful to be here!

  136. I am 45 and have struggled with skin issues my entire life: keratosis pilaris, fungal infections and rosacea. In my preteen years the IBS symptoms with fat malabsorption started. As a teen my menstrual cycles were irregular and I began lactating due to elevated prolactin levels. Through my twenties and thirties I was subfertile and had recurrent, almost chronic vagjnal yeast infections; even a fungal UTI which was really freaky. I look very healthy and well-nourished, but my iron level is slightly low. No doctor has even given me any answers to why such a healthy person has these issues. Over the last few years I’ve started fixing things myself. I’ve been controlling the IBS symptoms with daily probiotics and resolved my vaginal yeast infections by getting rid of most of the white flour and sugar in my diet. I’m now struggling to heal a stubborn fungal skin infection that was misdiagnosed a decade ago and came across information discussing hyperprolactinemia and the link to celiac. Suddenly everything makes sense. It must be celiac; the involvement of prolactin seems somewhat defining in itself. I take no medications (aside from claritin), don’t have a tumor and have no symptoms of other autoimmune disorders. I have been gluten free for 5 days now and already feel more energetic, and I never knew I was fatigued. This is so weird. Thanks for being here.

    B

  137. Happy B that gluten appears to be the issue for you but please get tested so that if you have celiac disease your doctor can help you negotiate getting well that many times goes beyond the GF diet (testing for and ordering vitamin and mineral supplements, testing for other autoimmune disorders, other food sensitivities, etc. ) Then there is the lifelong strict adherence to a GF diet to prevent other serious disorders like lymphoma, and recently esophageal cancer has been associated with CD. The longer you are GF the greater the chance of a false negative test serum wise and then the less likely the doctors will proceed to biopsy of the small intestine – though with your history and response to a GF diet it should be done per most CD specialist even if the antibody test is negative. They may first do genetic testing to see if you have the two most common celiac genes – though there are some CD folks who now have a third less common gene not often tested for. That said, getting a correct diagnosis is work and can be complicated without a knowledgeable CD specialist and so many sadly just do the GF diet without the work up. Make the effort to get diagnosed.

    I can also tell you that after a dose of strong antibiotics some 24 years ago I developed a severe intestinal candida – yeast infection. Soon after they discovered the severe anemia and lack of iron stores – and where set to do a bone marrow test for cancer and a transfusion when I finally started to respond to the iron and folate supplements. Nobody put it together back then as I was not diagnosed with CD until about three years ago.

    Best of luck.

    Sharon

    • Thanks for your reply Sharon. So many tough stories with this. I hope you’re feeling better. I suppose I’ve gotten a little cynical over receiving much benefit from a physician diagnosing me. My fungal UTI occurred after an antibiotic therapy for bacterial vaginosis, which then turned into a resistant vaginal yeast infection and moved to my urinary tract. The doctor was kind enough to give me a once a week, prophylactic prescription of Diflucan for the recurrent vaginal concern, but basically told me I was crazy and wouldn’t do anything about the urinary tract. I ended up self treating by strategically taking the entire course over 7 days. For 2 days I peed clear urine with tissue paper looking stuff in it, and voile it was gone and has never come back.

      I’m actually a registered dietitian and know many of the right answers, but must admit the view is much different from this side of the fence. I have contacted my current gyn and gastroenterologist, but haven’t been able to talk with either yet. I had an endoscopy and colonoscopy back in November and was diagnosed with a hiatal hernia and just finished paying on my $1200 balance. I am really undecided if I care that much about having a true diagnosis, especially when I have no symptoms of other autoimmune disorders. Even my vitamin D levels were good when I had them checked just a few years ago. Truly it is by the grace of God that I’m not in total organ failure after dealing with this stuff for nearly 40 years. I will talk to my doctor, but I’m truly undecided about paying for a bunch of tests so someone can give me a label and order a gluten free diet, perhaps even refer me to a dietitian. I figure when I stop lactating I’ll know I’m getting it right.

      Thanks again, B

  138. I hear you B just please then jstay true to the GF program. I am an RN and also worked in the database arena of clinical research for many tears. There are the stories in blogs and some research that even with a biopsy a diagnosis can be missed. So I fully recognize not wanting to go any further when the treatment is the same. It was Dr. Green of Columbia U I believe who noted that depending on which area or areas of the small bowel are affected the mineral and vitamin deficiency will differ from patient to patient. For me it was definitely the iron, folate and as demo’d by my severe hair loss the B vits in general. I was however blessed in that my calcium levels held up and no bone density loss with two post menopausal bone density tests. Others I know with CD have been not as lucky with severe osteoporosis and this one person I know also had a hiatal hernia like you! Think we need an ongoing database in each country of patients and associated symptoms and disorders who have CD or gluten sensitivity.

    Even though you have expertise a good dietician to talk this out with might be good – one who can convince your doctor to at least test you for all the known vitamin and mineral deficiencies seen with CD and NCGS non celiac gluten sensitivity. If you reach a block in progress you may need to look at other food sensitivities. In my case dairy was initially a problem after years of no issues then once I healed I could tolerate it – others are not so lucky. Try to stay away from food additives.MSG and seaweed and seaweed-based additives (carrageenan, algin, alginates) cause me terrific GI, joint and other related problems and many others with CD and NCGS have also blogged about this.

    Thanks for the healing wish. Had like two dozen issues (some I did not even know were issues) that have cleared on the GF diet. My final symptom that has not resolved is my weight which stabilized immediately on the GF diet but for which I am struggling to lose weight by ramping up my dead metabolism. As a kid I was skinny and sickly with an anemia of unknown origin. Isn’t life funny?

    Everyone’s story is different yet the same if you know what I mean. Best healing to you, B.

  139. My gastroeneterologist ordered a celiac panel. According to the office assistant my results were normal. I’m not sure if I should be pleased or not. It takes me back to square one with my hyperprolactinemia. For now I plan to remain gluten free, as I have realized benefits I never expected. I have an appointment on the 24th to discuss this with another doctor. Thanks again.

    B

  140. Where do I begin? I am 33 years old. I am undiagnosed.
    - I have been sick all my life. Just in general bad immune system.
    - By age 25 lost one ovary due to poly cystic ovarian syndrome.
    - After that became almost completely infertile.
    - Did have another child at 28 years old. Have two kids , had gestational diabetes with both kids.
    - I have had psoriasis since I was 21 years old.
    - Ulcers since I was a teen.
    - Depression since I was a teen.
    - Two years ago started losing my hair recently hair has thinned out bad.
    - thyroid is normal.
    -had hysterectomy 2012 had a fibroid tumor that removed with it.
    -2013 had other ovary removed went into menopause but was put on hormone replacement. Immediately started losing weight and feeling better some what.
    - then I had my Gallbladder removed started gaining weight, fatigue, overall my symptoms got worse.
    - have had IBS with constipation since I was 12 about.
    - recently been anemic.
    -I thought I had Lupus they say I don’t but might have mixed connective tissue disease.
    - all I know is the doctors look at me like I’m crazy that I can’t have all this wrong with me.
    -Oh and numbness bad in my hands and feet. My hand goes numb for no reason and so does my foot.
    - also I have been having non-epileptic seizures since April 2009 they say it is from something called Conversion Disorder. A mental illness disease. It also causes stroke like symptoms.
    - I have severe anxiety I have had since I was 15 years old or younger.
    -So the doctors say all or most of my symptoms ate from mental illness and brush me off.
    - also this year I had kidney failure but am okay now.
    - had a urachal cyst on my belly button have to be removed.
    - elavated liver enzymes.
    And I have pain on my left side that is unexplained.
    Also numbness on and off all on my left side.
    - I had the mouth sores and a pressure I’m my mouth that hurts and my teeth are all broke off on the inside all the back teeth are.
    - I have pain, ringing, and hearing loss in my ears.
    I have terrible migraines.
    And I just want to know what this is, how to feel better, and how I can lose weight because dieting does not work

    • Sabrina,
      Your story has some similarities to mine. Been a couple of months since I’ve posted. Bottom line for me is that I don’t absorb b6 — which when I became depleted — had atypical seizures — like I was high or drunk. I’m a nurse in leadership position so have been off while figuring this out.
      Anyway — had multiple vitamin deficiencies and physical issues; one neurologist dx me with conversion disorder as well. I want to encourage you to continue to keep after the practitioners — I know how hard it is –for something more definitive. As the docs who finally listened/correctly treating my illness explained, Conversion disorder is frequently used when a practitioner does not know what else to do. My treatment plan includes high dose b vitamins which have alleviated almost all symptoms; with frequent labs. I don’t have celiac. Have rare malabsorption issue (recently discovered my dad has also). Sorry for long post!
      Best of luck to you!

  141. Can it be Celiacs if you gain weight instead of losing? I have the following symptoms:
    Extreme fatigue
    Low vitamin D
    Bloating
    Weight that won’t come off because I’m too tired to exercise and recently had two babies
    Muscle pains and joint aches
    Greasy hair
    Scalp sores
    Thyroid antibodies (thyroid levels are still normal and drs won’t treat but I have heard Celiacs and Hashimotos are linked)
    Granuloma Annulare (raised patchy rash on skin)
    Red uneven skin on face
    Terrible smelling gas and feces (to the point where others comment on it – especially after eating)
    My doc has tried to say I’m just depressed but I don’t feel sad. I just feel exhausted! Help! Any ideas?

  142. My then 14 yr old son had no digestive issues or skin rashes. He had short stature and delayed puberty. His blood panel came up positive for Gluten (high IgA number) and we chose to do a biopsy to confirm since he was young and we were scheduled to see an Endocrinologist. Biopsy came back positive. So he went Gluten-Free about 18 months ago. He gained 14 lbs in first 6 month and grew 3 inches in first year. He just had another 6 month checkup and he gained 8 lbs and grew 1.75 inches in that same time frame. My husband on the other hand, had all the digestive issues and skin rash but came up “within normal range” on the blood test. He has gone Gluten-free and all his symptoms have subsided. We asked our Pediatric Gastroenterologist about that and he said that it was possible to have a “normal” blood panel and positive symptoms. Ergh. An intestinal/stomach biopsy is the only for-sure test.

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