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118 Comments

  1. 1

    Sarah

    Great blog.
    Re: the 9 signs. i have none of them. And yet, 1 year ago I was diagnosed with Celiac Sprue Disease as results of Endoscopic Biopsy (5 samples taken). There follows a year (so far) of hell as I try to follow a gluten-free lifestyle while living in a very small remote town in East TX, I have a highly-visible job wherein well-meaning people try to feed me foods I can’t eat, and are hurt by my gentle refusals. etc. & etc.
    Meanwhile, as I had NO digestive symptoms before diagnosis – why the endoscopy? We were looking for a reason for my being severely anemic and calcium deficient, despite being and enthusiastic Carnivore who drinks 1 qt+ of milk a day — I do not feel one whit better. I’ve gained 25 (more) pounds in the past year, adding to my already obese frame, but otherwise I note no changes.
    Other members of a Celiac Support Group which I attend think i am nuts to question the diagnosis. “Why are you in denial?? embrace GF living, and you’ll feel so much better!!” I didn’t feel bad before!!!
    Do you have any advice – resources – guidance????
    Thanks for listening.

    Reply
    1. 1.1

      The Gluten Dude

      Hi Sarah. One quick question: Did you get your blood tested for celiac as well? There are two parts for a confirmed celiac diagnosis. One is the endoscopy and other is the blood work. Blood tests can detect higher than normal levels of certain antibodies in people with celiac disease. As far as I know, you need both to come back positive to confirm you have celiac. Please confirm this with your doctor though.

      If you do indeed have celiac disease, it is not totally uncommon to not have any symptoms. But even if you don’t have symptoms, please understand that any trace of ingested gluten will damage your intestines, which can lead to other worse diseases (cancer, etc.).

      As for the others in your life, I’m sure they all mean well, but you’ve got to look out for yourself. You simply cannot eat gluten and if your co-workers cannot understand that, they’re boneheads.

      Hang in there Sarah. I’m five years in and it does indeed get easier and you get to a point where you can’t even imagine eating some of the foods you used to eat.

      Reply
      1. 1.1.1

        Marcia

        I have a co-worker who loves to bake. She would leave little treats on my desk and say “lovingly” .. it’s ok, it’s really little. IDIOT!!! I can’t tell you how many times I have told her that I can’t have it, no thank you, that’s very sweet of you but no, she didn’t get it. finally I just said, it would make me sick, so NO!!!! She pouted and her feelings were hurt, geeezzzz!!! Some people are just dense!

        Reply
        1. 1.1.1.1

          The Gluten Dude

          Yep…

          Reply
        2. 1.1.1.2

          Donna

          Hey Marcia…My Mother in law told me that the flour was only on the outside. Just scrape it off. Talk about DUMB!!!! lol

          Reply
          1. 1.1.1.2.1

            Marcia

            Hi Donna, I know.. it’s so crazy.. I am going to a BBQ with my boyfriends family this weekend, and they are making macaroni salad, rolls and probably cake for dessert. Luckily I bring my own food and they don’t care. Chicken on the grill and ribs and salad… I don’t even bother saying that I can’t eat something, there are too many somethings, I just don’t eat it.

            Reply
        3. 1.1.1.3

          erin

          I love it when people who have no idea what it’s like to have either food allergies or sensitivities can just say “it will be ok, just eat it”… as if they have ANY idea lol

          I had a friend recently tell me (after I told her my stomach was DYING due to eating ice crea and I’m lactose intolerant) “you know that stuff is all in your head…”

          pfffffffttttt sure honey. except the part where it’s IN MY INTESTINES :P

          Reply
        4. 1.1.1.4

          ryan

          I have been diagnosed celiac, and like everyone else I have digestion issues. Not only This but I am also recovering from drug addiction, and have to rely on next to nothing to eat. I go to food bank. They barely have anything gluten free. But they say it is. My angus has never been more raw and my underwear been so messy. I’m sick of this stupid allergy , the people feeling sorry for me, the attitude problem ive had and the fact that I have to keep eating gluten because its in everything I get from the food bank. I got a total of two gluten free granola type bars and I question gluten free pasta. I can’t handle this by myself I need help.

          Reply
          1. 1.1.1.4.1

            ryan

            Anus grrrrrrrr I’m gonna smash this stupid tablet rhdjxkcjfkfjs theres the gluten rearing its ugly head again

            Reply
          2. 1.1.1.4.2

            Jean Cooper

            I know the feeling. i started with GI bleeding in 1977. I was in the hospital 3 to 4 times a year. Was always told they could not find anything wrong. Sometimes they would tell my husband I had a little colitis. Put me on meds for 30 days and say I would be fine. This went on until 2004 when I got to someone that knew what they were doing. This Dr told us that I had been misdiadnosed for so many years he did not know if he could ever get me straightened out. He test me for celiac and half came back positive and the other half negative. He said that the only way he knew to make sure was to put me on a gluten free diet for 2 weeks. He said if that was the problem I would feel better. I felt great. My pain decreased, diarrhea got better. I know it is expensive but I have learned to cook everything except dumplings like my mother made. I cook one meal. My husband can’t tell the difference. I make a coconut cake that he eats more of than I do. I sympathize with anyone that has GI problems. I have had two surgeries. One for reflux that was damaging my vocal cords, and colon resection. I have ulcers, spastic esoghogus, and reflux has come back. It is not easy. I was fortunate to find a doctor that was more interested in finding my problems than making money.

            Reply
      2. 1.1.2

        Donna

        Can’t even imagine Gluten Dude??? OMG…one bite and I am heading to the bathroom! It’s pretty scary because you wonder…ok…diarrhea…what other symptoms are are going to arise from this one bite????ARGHHHHHH!

        Reply
      3. 1.1.3

        Sarah

        I had a endoscopy done,and said they think I have Celiac Disease,from the biospy but blood work was negetive for it.I have stopped all gluten for 9 months now,and my symptoms for that disease went away,but now last 5 months I’m sick again but not with all those symptoms,just nausea and off and with left side stomach pain,fatigue,weight loss.I have had so many test done for last 5 months with abnormal tests,but doctors aren’t figuring it out.Being tossed from doctor to doctor.I’m to my witts end on all this.I just want to feel better it’s litterally taking over my life with work and home life.I do want to say that My MRI I had done in November 2012 stated that there is Prominent rectal wall thickening of 3-4 mm,which is borderline thickened along course of the rectum diffusely,this type of finding can be seen with proctitis,recent disimpaction,etc.Differential diagnosis would include infectious proctitis,IBD,etc.and in blood work, ANTI-NUCLEAR ANTIBODY was Postive(A),ANA TITER was out of range and ANA Pattern was Solid(A).Can somebody explain some of this to me,I can’t get these doctors to do it.

        Reply
        1. 1.1.3.1

          Esther

          Have you considered you might have Crohn’s? My sister who has crohn’s had similar issues with anemia, etc.

          Reply
        2. 1.1.3.2

          Stephanie

          Sarah,
          Did they every check you for kidney stones?? I’ve been dealing with the left side pain off and on for years now and I finally figured out it was kidney stones. The pain always kinda fades down my left side and I guess they start to break-up on the way because I never felt them when I peed except this one day when I finally did! I still haven’t figured out why I’m getting kidney stones all of a sudden but I figure it’s a nutritional imbalance that I’ll work out one of these days. I mean, your diet changes soooooo much when you go gluten-free and then you body finally starts absorbing things… Big changes! Good luck! I hope you’re doing better now. :)

          Reply
      4. 1.1.4

        Tamera

        Dear glutendude,
        I stopped eating gluten approximately 3.5 years ago Without being tested as after reading a book about celiac disease it seemed the book was written about me. Within 2 weeks I saw amazing differences in myself and how I was physically. Over time I noted drastic changes for the better, even seeing my adult onset asthma totally clear up…and have not needed or used an inhaler since I stopped eating gluten. Weird or? Anyways, my question to you is … is it too late for me to have appropriate testing being that I’m pretty much gluten clean? I am nearing 50 years old this year and feel concerned about my villi and any damage that MAY have occured, as well as concern that perhaps my self diagnosis wasn’t completely correct as my father has Crohns and I’ve read that sometimes these two can be similar? Or? Please help me as I’m a bit lost on what my options are … Thank you!

        Reply
        1. 1.1.4.1

          Deanne

          Hi Tamera, Can you tell me the name of the book please? My 22 yr old daughter has been struggling with a lot of gi issues this past yr and I’m started to feel like she could possibly have Celiac’s. Thank you.

          Reply
      5. 1.1.5

        Anne Riley

        My daughter was diagnosed in late 2014 with Celiac and shortly there after Addison’s. Add that to her hyperthyroidism and finally Down Syndrome.
        She definately has her plate full.
        As of late it’s the Brain Fog that causes concern.
        She is very high functioning and always positive and social. Yet this “fog” issue is a concern. If it’s the natural progression of the Downs that okay. But if it’s something we can help her resolve then we need answers.
        With so many issues it’s a challenge to pin point causes of changes that impact her quality of life.

        Reply
        1. 1.1.5.1

          Karen

          I was searching for more info on Celiac and came across your post re. your daughter… I just want to say that I hope the docs have told you to watch for symptoms of Type I Diabetes! I have Type I, Addison’s, Graves, and Celiac. These diseases party in gangs!

          Reply
    2. 1.2

      Tracy Dean

      HI Sarah,

      I was exactly like you, the only symptoms I ever had were severe anemia (requiring iron transfustions), brain fog (they all thought I was a ditz), and really bad bruises if I just bumped into something. At age 40, my Dr finally had my blood tested, and I did the endoscopy. I’ve been gf for five years now, and I still feel the same. BUT, when I get glutened, I’m on the floor of the bathroom for 8 hours in a neurological adn physical hell. You WILL start to feel better, and it always helps to talk to people who actually understand! Hang in there. Stay healthy. Exercise.

      Reply
    3. 1.3

      arnold zimmerman

      Hello Sarah,
      It is just not true that you need to have have both a positive intestinal biopsy and elevated serum levels from either or both of the endomycial and the transglutaminase tests. Many times the biopsy misses the area to proclaim a diagnosis of celiac and the most often used blood tests are much better at giving you a false negative than a false positive reading. A complete digestive stool analysis that tests for gliadin antibodies, secretory IgA and pancreatic insufficiency can be far more reliable, when combined with any of the symptoms that brought you to the doc in the first place. Most people are better off gluten free even without celiac. The difference is that those with celiac are much more compromised by its ingestion. There is good reason for those who want to eat well and they right off the bat eschew gluten. Period.

      Reply
    4. 1.4

      Bois

      Sarah, my daughter is in your situation. She felt fine until the anemia hit. Then she had headaches, irritability, brain fog and even developed a lisp. We started iron injections before the Celiac diagnosis. Once she got the iron injections she felt fine.

      After the Celiac diagnosis (blood and endoscopy), we found that her zinc and vitamin K were also low. She has been zealous about her GF diet and we are now a little over 3 months in to the GF diet.

      Unfortunately, her Zinc is lower than ever, and although she is not anemic (because of the injections & two IV’s) her iron is nevertheless dropping faster than ever and her Zinc is almost zero. Still no outward symptoms. So we have to reexamine her diet and/or kill all grains.

      So, don’t think that just because you don’t have symptoms you should question the diagnosis.

      Reply
    5. 1.5

      Tanya

      Sarah, Hi. We are probably pretty close to each other, I’m by a small East Tx town also. We should get together. Dr hasnt diagnosed me with celiac or gluten sensitivity, just pills to mask symptoms that I refuse to take since they can cause suicidal tendencies. I mean really, How much more am I supposed to take? I already have over 40 things wrong with me, almost half are gone or better being GF for only about 2.5 months now. Dr wouldn’t even look at my list of things wrong with me. He only said ‘1 thing at a time’ & here’s a Rx. I’m going to get the genetic testing done so I know for me, my parents (who both have multiple problems could be caused by gluten) also for my siblings ( 2 of my sisters have problems) and of course for my children to know. I know I can’t have gluten, I just don’t know clinically why. I’m still afraid to eat out. I am still learning what I can’t eat, like the BC GF cake or brownie mix, or even just a spoon of the GF frosting. It all seems to get me.

      Reply
    6. 1.6

      Niki

      Hi, I know this is wayyyyy late, but I have very similar reactions to the casein protein in dairy that I have to gluten. Try almond milk products. Also, I cannot tolerate oats. Same reaction, even to gluten free oats.

      Reply
      1. 1.6.1

        Ali

        I was so sick for years and it was dairy. From my research, dairy and gluten problems are often interchangeable. I have same symptoms of all of you and my daughters too. My 6 year old’s behavior gets very hard to handle sometimes and I never got her officially tested. I’m starting to think I should now for validation. I let her have a bite of angel food cake the other day (me = idiot) and what a wreck she is again. So hard but at least there are so many resources and Costco is excellent…

        Reply
    7. 1.7

      Amanda palumbo

      People with coeliac disease are often lactose intolerant for 2 years after diagnosis so try cutting out the pint of milk or have an alternative. The reason being the part of your gut damaged by coeliac is the same part that absorbes lactose.

      Once your gut is properly healed the lactose intolerance often goes away but it can take a while so stick with it.

      I put on weight to but I think it’s because your body isn’t getting everything it needs so it’s holding on to everything. Hopefully it will sort itself once the gut heals completely.

      Reply
    8. 1.8

      Athena

      When someone has one food allergy or sensitivity they are rarley only reactive to one. You may have to skip most or all grains too. I would see if you feel better with zero grains. You said you drink milk all the time. Have you been tested for the ability to digest lactose. Did you know that pasteurized dairy is not good for anyone. Some people are ok with raw milk, nobody is ok with pasteurized dairy. If you find out that raw dairy is ok for you and decide to switch to raw dairy, then please read about how to consume it safely, since it doesn t stay good anywhere near as long as regular old pastuerized milk does. You need to get it from a farm or a natural food store. Major food stores don t have it. Also, I ve learned that we can digest dairy warm much easier than when it s cold. Test all these things out for yourself. And stop letting doctors cut things out of you. Good luck ☺

      Reply
    9. 1.9

      Sharon

      Sarah, I would dig deeper. I’m basing the questions on weight gain, and I’m assuming you still have fatigue (could be wrong on that one).

      Did the doctors test your thyroid functioning? Tired Thyroid has awesome, medically researched info on optimal thyroid levels. (I had symptoms months before my TSH went high.)

      Are they monitoring your iron/ferritin levels to be sure they increased as expected, or are you still anemic? (I had to have IV iron because the pills didn’t work for me.)

      Are you still drinking and eating dairy? Many people with celiac can’t tolerate dairy for the first year or so. Also, it’s possible you may have other food intolerances. (fructose and fructans make me very fatigued and brain fogged)

      Are you eating a lot of processed GF foods? They’re full of fats and sugar, and substituting them for non-GF bread etc may be contributing to your weight gain. You could transition to a more whole-foods diet and see if that helps. I will admit I hated having to do that as I hate to cook. I eat healthy because I have to, not because I want to! LOL!

      Reply
    10. 1.10

      Char

      Wow…my husband’s story sounds exactly like yours! He is supposed to go on a gluten free diet because he has been told he has Celiac disease also. Problem is…he has only a couple symptoms which occur very infrequently and feels fine 90% of the time. I think doctors are just nuts if they can’t put a name to something after all tests show NOTHING! He figures he can’t die healthy so he is going to keep on enjoying life and good food he likes till that day arrives!

      Reply
  2. 2

    Sharon

    My symptoms are anxiety, fatigue and terrible acid reflux, none of which have gone away after 2 years of strict gluten free diet. I had the endoscopy to check for damage from the acid reflux and that’s when they found the celiac. I gave up gluten the next day and have been waiting and waiting to feel better. I can handle the sacrifice of the food but it would be nice to feel good again.

    Reply
    1. 2.1

      The Gluten Dude

      It took me more than three years to start feeling better so I know what you’re going through. Keep doing what you’re doing and eventually you will begin to heal.

      If not, maybe you’ve got something else going on as well.

      Keep me posted.

      Reply
      1. 2.1.1

        Brandon

        I was diagnosed w celiacs about two years ago, and definately feel better than I did before giving up gluten. I still deal w a pretty sensative stomach, and the rashes that you mentioned which are miserably itchy. Can anyone relate? The itchiness also affects my lower extremeties. Have an appointment to see a specialist this week. Thanks, live well.

        Reply
    2. 2.2

      Mads

      Hi Sharon,

      I am not an expert by any means – and this is my first time on this site as well. I have had to cut out soy, corn, casein and all relatives of wheat+gluten to feel better. There are some days when I don’t feel great either.

      If you follow gluten free goddess, you will also note that she has had to give up other foods. You might try seeing a naturopathic doctor that can do a blood test to see if you have allergies to other foods. My sister, for example, can not have banana, broccoli or blueberries. (odd that they are all Bs).

      If that is not a possibility for you right now – try cutting dairy and corn. Both of these are often triggers for celiacs (or those with gluten allergies)

      Reply
      1. 2.2.1

        The Gluten Dude

        Thanks for the input Mads. I have given up dairy since I originally wrote this post and I can’t begin to tell you how much better my gut feels. Mrs. Dude says I almost never complain anymore.

        Now if I could just do something about my back…

        Reply
        1. 2.2.1.1

          Mads

          Oh, thanks for the note. For the back – yoga has been my answer! Strengthens the back! Start at home if you feel silly – but a studio is great to ensure you are not hurting yourself.

          Ps. amazing site. very real and informative! I think it is great you still have a mixed-household. Something I worry about when starting a family for sure!

          Reply
          1. 2.2.1.1.1

            The Gluten Dude

            Been dabbling in Pilates. Yoga is next. Thanks for the positive site feedback. Much appreciated.

            Reply
        2. 2.2.1.2

          Agni

          Swimming is also excellent for back pain etc. 30 minutes 2-3 times a week its all you need. 1 relaxed session makes you feel good for the rest of the day. Good luck!

          Reply
      2. 2.2.2

        Marcia

        And oats!!

        Reply
    3. 2.3

      Donna

      Sharon, I have those three symptoms as well…and they have NOT went away either. Ok…the acid reflux is better with medication, but the anxiety and fatigue have NOT went away, even WITH meds!!!!!!

      Reply
    4. 2.4

      Sammy

      Sarah I’ve only been gluten free for 2 years now and a few months ago I started getting really sick again. I think my napping was up to infant level and the brain fog was making college classes near impossible. I went in again and got thorough allergy testing and it turns out I have a whole lot of other food allergies (beef/nitrates/yeast) and can’t process sugar along with getting a parasite that my body was too weak to fight off. If it still is bad you might want to go in again. Of course me having other issues doesn’t mean you will, but I thought everything I felt was simply me getting the gluten out of my system and turns out there was more to the problem.

      Reply
    5. 2.5

      Athena

      Try reiki. I tried everything. Chiropractors, shiatsu, accupuncture, yoga. Excercise is helpful for everyone. What a lot of people don t realize is that the very root cause of everything is emotional and is very hard to be aware of at times. You may say I m good emotionally, and then you start doing healing work on an energetic level and you will start crying the hardest cry. Reiki is the only thing that really helps me. And yoga classes between reiki sessions. That is why yoga helps so many people. It keeps our energy centers (chakras) balances and bright. Reiki works directly on this. Reiki can heal anything if you let it.

      Reply
  3. 3

    Dottie

    So happy I found this site. Someone in our celiac support group shared it. My son was diagnosed as “allergic to gluten and casein. Very sensitive to soy and corn.” What a nightmare it has been. I fully appreciate your article on Amy’s pizza. The ingredients make my head swirl. As soon as I think I have figured out what to keep him away from, I find a food clearly labeled as “GLUTEN FREE,” only to have an ingredient I thought was off limits. Since I am new at this, of course I question myself. Very frustrating. I called the doctor and asked if he had celiac and if he was actually tested for that, she said it is a lengthy conversation and I needed to sit down and discuss it with her further. Hmmm. I have an appt tomorrow. It has been about a month gluten/dairy free and he does not seem to be much better. He is due to have bloodwork again, his iron, B12 and vit D were very low.

    Reply
    1. 3.1

      The Gluten Dude

      Sorry to hear about your son. I always say as much as it sux to have celiac disease as an adult, it must be much worse as a child.

      Not sure why it would be a “lengthy conversation” with your doctor. Celiac diagnosis is a pretty straightforward test and either he has it or he does not have it.

      Please keep me posted on his status and if I can be of any help, do not hesitate to call on me.

      Reply
      1. 3.1.1

        Dottie

        I went to talk to the doctor today. She did not test for celiac, only for gluten allergy- which obviously he was positive for. She is willing to run the bloodwork for the antibody, but does not really seem happy about it. The treatment is the same, so she does not see any reason to proceed any further. I would like a correct diagnosis. I am not sure what was so lengthy about it, it definateky could have been handled on the phone with a simple yes or no. I think it was more the fact she feels it is not necessary to proceed. Maybe it is not, but I would like to know what we are dealing with. From what I understand, celiac can run in families.
        Your site is a wonderful resource and I will recommend it to others I know with gluten issues. :) Thanks a bunch!

        Reply
        1. 3.1.1.1

          The Gluten Dude

          Appreciate the kind works about the site…

          Now regarding your doctor, I don’t have too many kind words. I don’t understand why she wouldn’t test for celiac. The treatment may be the same, but an allergy and celiac disease are two totally different things. And you and your son deserve an accurate diagnosis.

          And yes, celiac is a genetic disease so they would another reason to want to know.

          My two cents is to find another GI who takes it more seriously.

          Boy…sometimes I just hate the medical community. Truly great doctors are few and far between.

          Reply
          1. 3.1.1.1.1

            MaraKate

            At the University of Chicago Celiac Center they do a FREE day of testing each year in October. You have to sign up but they do the blood test and you can bring in the whole family. It was a great event with a expo of different food vendors, even local bakeries and a pizza place. If a doctor won’t test you there are other resources.

            Reply
  4. 4

    Gabbi

    Hi. I was diagnosed with celiac disease a week ago, pending the gastroscopy. Whilst still in denial a little, I am thankful that I have a fantastic doctor on my side. I originally just wanted to be tested for low iron levels, as I’m always quite tired, but the dr insisted on b12 and a bunch of other tests. When the results came back saying I had both iron and b12 deficiencies, the dr immediately ordered the celiac test without so much as a “how do ya do”. It never crossed my mind ever that I could be celiac. I probably would have been one of those ignorant people who would feed a celiac cous cous and say “but it’s not wheat”.
    Even though my life will probably be much harder for a while, I am still so glad I found out now, rather then when I’m 60 and my intestines are destroyed.

    Reply
    1. 4.1

      The Gluten Dude

      That’s the right attitude to have Gabbi. I wish you well on your celiac journey. And count your blessings that you have a doctor that rocks!

      Reply
  5. 5

    A

    Hi
    Great post – loving it!
    I am sure everyone’s doctor is on top of it but have you all had your thyroids tested? Celiac and thyroid disorders often go hand on hand and could be why some of yoiu are still feeling really bad after all of this time – just a thought!

    Reply
    1. 5.1

      The Gluten Dude

      Thanks for you input. I will indeed do some research on my end.

      Reply
    2. 5.2

      Bois

      Sensible doctors test for thyroid and other minerals and the B’s and folate after the diagnosis.

      Reply
  6. 6

    UGH!

    Hey guys,
    I’ve had my share of gastro problems over the years, but nothing this bad. They just say you have IBS when they don’t know. I’ve had some of these symptoms for a month at time in the past, but it would clear up.
    I had a hysterectomy in July and haven’t been right since. I was feeling so bad, I had a colonoscopy and endoscopy done in Dec. They said I had GERD. Gave me something for it. It seemed to work for a bout 2 weeks, but now, things are even worse. I raised the head of my bed up, try to stay away from food that’s bad for GERD, but it doesn’t do any good. It has been 7 months of 24/7 discomfort. I can eat just one bite of bread and bloat up like I’m pregnant. I usually get some relief during the night, but soon as I’m up and going, I feel so yucky, I can hardly function.
    I’ve had all abdominal organs scanned this week and nothing that unusual showed up on regular CBC blood work. I suggested to my doctor, what about celiac? I am seeing the doc again tomorrow to discuss the antibody( whatever) blood test and another endoscopy. They could have done that biopsy the first time!
    I have also lost 11 pounds in 4 weeks, 5lbs. of which was just this last week.Seems like I can’t eat anything. I’m 5’10” and at 133lbs. I don’t need to lose anymore.
    I am hoping it is celiac, so I will know what is wrong and I can fix it and get on with life! I hate feeling awful all day. I don’t know what else to do if they say it’s not celiac.

    Reply
    1. 6.1

      The Gluten Dude

      Insist on getting tested for Celiac. A good doctor and a proper diagnoses will make all the difference. Hoping they find a cause for you…soon!

      Reply
    2. 6.2

      A

      These guys have years of research on allergies, food intolernces etc. and have put out an elimination diet that may help if you don’t get any joy from the doctors.

      It walks you through the whole thing and helps you figure out what the problem is (of course if you are going through tests with your doctors you cant use it as that will affect the test results).

      It’s in Australia but you can order the book from them and it is a very comprehensive guide to foods that you can and cant eat (except of course it has some Australian brands). If you look around on the site they also have a pretty good recipes book and some other resources.

      How do I know all this stuff – I am/was intolerant to salicylates and am just waiting to get the endocopy and biopsy testing done for celieac – what joy!

      Reply
  7. 7

    Melissa Booth

    I had to throw my two cents in here. I too am a chunky butt. My history with Celiac is a long one. I thought originally that I had IBS. I was diagnosed when I was 18. Yet didn’t get my actual celiac diagnosis until almost 19 years later when I was 37. The biggest clue was that I was clinically malnourished. Literally everything was low and I couldn’t absorb anything. I was always hungry, always in the bath room, and always gaining weight.
    My weight gain theory is thus— even though I wasn’t absorbing nutrients that I needed to, I was indeed still putting the calories into my body. But I stayed hungry because I wasn’t absorbing so it created this awful cycle. Hunger, bathroom, eating.

    Also like someone else said, thyroid does tend to go hand in hand with celiac. Specifically Hashimoto’s thyroiditis. It is an autoimmune disorder. It can also lead to slower metabolism which would mean harder to lose weight. If you have any of those symptoms you really need to be an advocate for yourself and if your doctor will not listen then go to a new one. Seriously. It took me about 6 years of being so ill that I could no longer work outside of my home in order to get diagnosed. Fortunately, I found a position that allowed me to stay home but otherwise, it was a dark, dismal, miserable experience and no way for anyone to live.

    Reply
    1. 7.1

      The Gluten Dude

      That is some story Melissa. And your theory on weight gain makes perfect sense…sadly.

      Dark, dismal and miserable describes a lot of undiagnosed celiacs.

      Reply
  8. 8

    JIGGY

    I can totally relate to # 5, 8 and 9 even before i was diagnosed with celiac.

    I ate more than anyone in my family and still remained skinny.

    Thanks for all the info.

    Reply
    1. 8.1

      The Gluten Dude

      You’re welcome. And yep, sadly, naps are still a part of way too many of my days.

      Reply
  9. 9

    Jen

    So glad I found this site. Dude, your posts are amusing, insightful and informative — thank you! I was just diagnosed with a wheat intolerance. I have finally found a wonderful doctor who, not surprisingly, is a naturopath. She suspects other food allergies but one thing at a time. Been diagnosed (or misdiagnosed… time will tell) with IBS, Fibromyalgia — you name it. Chronic fatigue, fog as thick as pea soup, bloating bloating and more bloating, bathroom stuff, gas, and the last THREE sips of a beer I had a couple of months ago had me doubled over in pain for the nght. Anyway, I find it very difficult and confusing to follow a gf diet but I’m reading as much as I can about it. You mention napping; I wasn’t aware that being so tired can be a part of celiac disease. I don’t have celiac so I’m wondering if it can be a part of a wheat intolerance, do you know? And do most salad dressings have gluten? If I don’t see an ingredient (i.e. gluten) in the ingredients I’m assuming I’m safe but after reading some of these posts now I’m wondering… (I remember reading something you wrote, Dude, about cocktail sauce). I guess what I’m asking is: Does something have to say gluten free for you to feel safe to eat it? Anyway, thanks for having such a great sight. I’m learning and appreciate all the posts. Happy holiday weekend, everyone.

    Reply
    1. 9.1

      The Gluten Dude

      Appreciate the kind words Jen.

      From what I’ve read, the symptoms of gluten or wheat intolerance can be very similar to those of celiac disease. The only difference is that you’re not getting damage to your intestines.

      As far as salad dressings go, it all depends (don’t you hate that answer??)

      Gluten can be hidden. It can be part of “spices” or “natural flavors” etc. So if in doubt, do your diligence. Check the web. Make a phone call to the company. And if you don’t get a solid answer, don’t eat it.

      Reply
  10. 10

    Tabitha

    My symptoms.

    Couldnt go to the bathroom, had to take a laxative web my stomach would hurt so bad.

    Fatigue, depression, insomnia, type II diabetes, and a recent diagnosis of Rhuematoid Arthritis

    My recent diagnosis of having RA really sparked my auto immune diseases research. I came across a clinical trial with RA patients removing gluten from their diet (as a result of positive tests for Celiac). Their results of pain subsiding, joint mobility slowing returning was amazing to me. A dream come true. My pain is so bad I can’t simply wipe down the counter. After going over the plethora of symptoms or could have, I made my Dr’s appt. I have a Dr who wears her heart on her sleeve. She listens, she cares, she advises, she questions modern medicine – always prefers natural over man made. She even once gave me makeup tips. After going over the print I showed her on this clinical trial, all she said, ” what harm can testing you do?” she wasn’t surprised of my diagnosis since I have a lot of classic symptoms but yet had symptoms from more progressed stages of the disease in her opinion. She sums it up that I’ve had celiac since I was diagnosed with depression 12 years ago. Our auto immune system is so much reflected on our nervous system, it’s amazing how one wouldn’t have known. My journey continues, it is hard but rewarding that tonight I cleaned my own kitchen , I wiped my counters, pain free for 30 days.

    Reply
    1. 10.1

      The Gluten Dude

      Great story Tabitha. Continued healing.

      Reply
  11. 11

    amy

    My daughter (6) was recently diagnosed with celiac. we are in a holding pattern right now. Her blood tests came back definite and now the Dr. says an endoscopy is needed. Why? Her numbers cause no question. She has been tested 2 times, 2 different Drs with a 6 week gap. Wouldnt it just make more sense to go gluten free and get on with life?

    Reply
    1. 11.1

      The Gluten Dude

      It’s such a personal decision Amy. Theoretically, an endoscopy is needed to confirm. And I’d want to know for sure…but that’s just me. Best of health to you and your daughter.

      Reply
    2. 11.2

      Bois

      In Europe, if the blood test numbers are high enough they don’t bother to do the Endoscopy. They made my daughter keep eating wheat so that the endoscopy would be useful. Their theory was that if she didn’t have the endoscopy she might not be convinced and might not be totally committed to the diet. I still don’t know whether we did the right thing in making her get sicker before they got the endoscopy done, but at least now we’re sure I guess.

      Reply
  12. 12

    Crystal

    I had blood work done for my liver and kidneys. The doctor (gastro) got the blood results back and know they were not happy with them (low). So know they have me going in for EGD Test. And looking to see if I have celiac disease. I have already had a colonoscopy. Should I be asking some more questions or asking for different test?

    Reply
    1. 12.1

      The Gluten Dude

      I’m always hesitant to give out medical advice Crystal so take it with a grain of gluten free salt. But a specific blood test and an endoscopy are still the standards for celiac testing. Find a GI who is very knowledgeable about celiac disease. Good luck.

      Reply
  13. 13

    coeliacgirl

    Hello,
    I got diagnosed last February after roughly a year and a half of trying to find a doctor who would simply give me a blood test after spending more time in the doctors than anywhere else. Finally got diagnosed with coeliac disease and mine were also off the chart.

    After a year I am only starting to feel slightly better but was wondering if you still get the ‘coeliac days’? I mean not glutened but just so so tired, detached, brain fog, almost dizzy faint and feeling achey to your bones?

    I’m hoping it will go away but i get days every month where i feel like this and it sucks.

    Reply
    1. 13.1

      The Gluten Dude

      I get them a lot still. That’s why when people say to go gluten free and you’ll be fine, it’s not necessarily the case. Tired and detached still describes some of my days. Hang in there!!

      Reply
  14. 14

    Karen

    I got diarrhea in late Feb. Had to have my diseased appendix removed 5 March…thought that would end the diarrhea. It didn’t. 3 months later (and after a colonoscopy/endoscopy combo–GI doc said I do NOT have celiac disease, and except for colitis, origin unknow, my colon looks great) a friend told me her husband really benefitted from a rice diet…rice only, for a week. I figure, nothing else is working, so why not? I only lasted 2 days before adding chicken broth and grilled chicken, but the diarrhea and stabbing gut pains stopped. Ate a few pretzels cuz I was feeling queasy one morning–boom, diarrhea/stomach ache returned. I figure I’m gluten intolerant. But I no longer have contact with my military GI doc. I suspect I do have celiac disease, it was just too early for an accurate diagnosis. I don’t know if they checked my blood or not. I live GF life, and it’s fine, but I do wonder if I should be retested. Am unwilling to eat gluten, though, and go through that horror…it was truly awful. No relatives have celiac disease, but it seems strange that I’ve developed a gluten intolerance at 49, out of the blue. Is there a good answer?

    Reply
    1. 14.1

      The Gluten Dude

      You either are or are not born with the celiac gene. It can rear its ugly head at any age and then you officially have celiac disease.

      Whether you want to get tested or not is a personal issue. It means going back on gluten for six weeks or so.

      Personally, I’d want to know. But I can definitely see the other side as well.

      Reply
  15. 15

    Dina

    I am going to be making an appointment to get tested for celiac disease. I am half Norwegian which I read ups my odds, I have had digestive issues for the last 13 years and i was diagnosed with having IBS after having no tests to confirm. I have had horrible acne since 19 years old (I am 37 now) and terrible scaring, I was diagnosed with Hashimoto’s Thyroiditis in 2007, I deal with headaches, nausea and I can’t tell you the last time my bowel movements were a normal color (now orange or yellow….sorry TMI) I have a tough time sleeping at night and feel fatigued throughout the day, so I drink way too much coffee to compensate. As a child I would constantly get canker sores and they went away for many years until I started with Hashimoto’s. This last week I was eating a lot of Melba Toast (which was allowed on the diet I was recently on, rather than bread) and I went 6 days without much of a BM. I used laxatives and they did nothing. My stomach is the worst it’s been in 8 years. I am pretty sure I have Celiac’s disease, so I am fearful that the test will come back negative which, from what I’ve read, it seems to happen often. So am I right in thinking that if it does come back negative I should have an endoscopy and that may confirm it? Can you direct me as to what tests I should be asking for? Thanks so much, I have been suffering for so long, it’s affected my marriage, my social life and life in general. My son also gets terrible stomach pains and I am fearful he too may have it. ANything you can advise me on is greatly appreciated.

    Reply
    1. 15.1

      The Gluten Dude

      So sorry to hear of all of your troubles Dina. Get yourself to a doctor and ask to get blood work done that will test you for celiac. If that comes back positive, follow up with an endoscopy.

      Even if the blood work comes back negative, you still may want to get an endoscopy.

      If they both come back negative, try going off gluten for 30 days at least. Absolutely no gluten. And see if that helps at all.

      Don’t wait!

      Best of luck to you. Keep me posted.

      Reply
      1. 15.1.1

        Dina

        Thanks so much for your fast response. I called the Dr. and have an appointment for 1:00 tomorrow for the blood work. I’d wondered about it in the past, but it seems years ago the symptoms listed were diarrhea and weight loss which I was total opposite of. Now I see the symptoms have been expanded. I found your site in a search engine looking for people’s personal symptoms on celiac rather than the medical book listing and I came up with your list of 9 ways you know you have celiac and many were spot on….especially the beer one. I can drink one beer and the next day I feel like I’ve been embalmed or like I drank hard alcohol. I don’t drink often, but there are days I wake up feeling severely hung over without having been drinking for weeks and my stomach goes nuts after bread, pasta etc. Thanks so much again. You’re a Godsend!

        Reply
  16. 16

    Dina

    Went yesterday and had the bloodwork done. Now it’s just the waiting game. They are testing for the antibodies, my iron level, Vit D level, liver enzymes and I also asked to throw a Lyme’s Disease test in there considering I live in NJ and have had many a deer tick on me. The more i read, the more certain I am that I have it. I was told years ago it was IBS, and I also attributed my son’s stomach woes to genetic IBS…but when I looked up the teeth abnormalities that accompany kids with Celiac Disease, they could have been pictures of his teeth :( and mine. I have always wondered why my teeth have ridges and are see through at the very bottom and not white. When my son’s adult teeth started coming in I thought “great, poor kid, he has my teeth!” I also realized I have had the celiac rash around my nose on and off for years and just recently had it under my eye. Now I just pray the results are correct. I made sure I ate a decent amount of foods containing gluten this week.

    Reply
  17. 17

    Dina

    Called to find the blood results today and they said they are normal. The only thing that was low was vitamin D. Weird thing is all of the symptoms are there. The terrible pains, the foggy brain, my teeth have ridges in them and my nails are club like as one picture showed. I have rashes, I have dealt with acne for the last 17 years and the forums I’ve read where people talk about symptoms and being “glutened” fit me to a T. I have Hashimotos Disease and Sjogrun’s (sp?) also run in my family I guess I am just going to go gluten free and stay that way. A diagnosis would have made things easier for my son and I because I could tell others like my in laws and my parent’s etc. that we CAN’T eat wheat and it would have been easier if we had it. I know that sounds crazy, but just saying you feel bad after eating gluten doesn’t cut it for many. Thanks.

    Reply
    1. 17.1

      The Gluten Dude

      The blood tests do not ALWAYS show the celiac. If you are convinced you have it, I would still suggest an endoscopy. If that comes back negative, perhaps you have a severe gluten allergy.

      Reply
    2. 17.2

      Carol

      Here in Canada, G. I. doctors say to eat mega amounts of gluten containing foods for a full 3weeks before you have the blood tests & the endoscopy otherwise you could have false negative results. Good luck, the prep is often the worst part, stay strong!

      Reply
  18. 18

    bill

    Any quick ways to detox your system of gluten? Its frustrating trying to deal with a gluten allergy.

    Reply
    1. 18.1

      The Gluten Dude

      All I can suggest Bill is to eat as healthy as humanly possible while your body is trying to heal. No coffee. No alcohol. No processed crap.

      Reply
      1. 18.1.1

        adriennne

        I have finally found people that are having simular syptoms , i had to diagnose myself about 2 years ago now, when i went to the doctors he said that i was just deppressed like millions of other people,in my heart i knew it was more,so i stopped eating things that made my stomach talk ,so far no wheat no starch no chemicals,which since feeling like myself again we have come to the conclusion that my daughters have the same allergys except my one daughter is lactose as well making it hard to pack school lunches and they are embaressed about being different, i have been cooking with coconut four not bad it just takes a bit to get used to the texture change , the hard thing is to come up with new food ideas for lunches and dinners ,the hardest part is i love to bake it was my therapy,the good part is i now have to deal with my issues instead of hiding behind baked goods,lol,i live in a small town and seem to be the only family that is not willing to pretend that eating the crap is okay , i have started a food journal logging the food i ate the syptoms and for how long they last,like on thanks giving i had a glass of sparkling fruit cidar the next day i could not walk without almost crying from the amount of pain my stomach was hurting and it lasted 3 days now the 4 th day stomach pain is a light roar but i am expeincing extreme anxiety in about another day i should be back to normal,to ease the pain i drink aloe vera juice taste like water thank god,lol,and i drink icorce tea ,sorry for the spelling i find my brain takes a break when i am suffering from food, if anyone has any info on helpful tips on food or just some helpful tips on anything i would be so grateful,i just feel like i am fighting a war alone …….please anyone

        Reply
        1. 18.1.1.1

          The Gluten Dude

          You are not along Adrienne. You’ve got a great celiac community here and in other places as well. Read thru my blog posts. Join twitter and hashtag gluten and celiac. Join forums. There are a lot of people out there who want to help.

          Reply
  19. 19

    Brenda

    Hi, I just found this site, read alot of the posts, very interesting. I also have diabetes (28 yrs) insulin pump…and since diagnosed with celiacs, its gone a little crazy. I Cant figure out how many carbs are in certain foods. (bakery goodies). Anyway….celiacs is worse than diabetes!! With diabetes I could at least eat good food and count carbs correctly. But this celiacs has presented a real challenge! I can use all the help I can get….My husband is on a fat free diet as well…you can only imagine our dinners. I recently made sugar-free, gluten-free and fat-free zucchini bread. Came out pretty good actually. But as I said, dinner is a challenge. Many experimental dishes, some good, some not so good. Fortunately, the GF food is getting better, only had it for 2 (+) years, but I see a huge difference since diagnosis. I didnt see where anyone uses a separate toaster, colander or utensils, but it had occurred to me that that may make a difference, taking into consideration – contamination? Well, thanks for being here…we all welcome support…knowledge it power….

    Reply
    1. 19.1

      The Gluten Dude

      Knowledge is power indeed Brenda.

      And yes. you totally need a separate toaster and colander.

      Reply
  20. 20

    Travis

    Hey I just have a question… So they say I have celiac’s, but none of the symptoms are there besides gas. It is when I eat gluten related things but could I be diagnosed with something other than celiac? I have tried almost everything from staying in shape to no gluten whatsoever. Medication & herbal remedies. Someone please help…

    Reply
    1. 20.1

      Bois Wilson

      Welcome to the wonderful world of Celiac, where nothing is clear (least of all to doctors). I have been on a one year journey of discovery, first getting my daughter diagnosed with Celiac (after 7 doctors scoffed at the suggestion, before they finally agreed to do the blood tests and the endoscopy).

      First of all, there are between 150 and 300 symptoms, depending on how you categorize them. There are some Celiacs who show NO symptoms, so you already have one. There are also several you may not have noticed, or you may not have encountered yet.

      My daughter had very minor reflux, occasional gas and occasional pain, but not enough to think anything was wrong. Then when she was 13, she slowly developed a problem getting to sleep and staying asleep. She developed daily migraines, became very irritable and suddenly went from being a brilliant student to an average one. Her ferritin levels (iron) had dropped to 7 and she was heading into anemia. She even developed a stutter.

      Once she had the iron shots, the symptoms disappeared. Unfortunately the iron kept dropping. So did the zinc which finally reached 1.7 (minimum should be 11.5). The iron and zinc dropped more rapidly than ever, despite the fact that she had been on a totally gluten free diet for 3 months.

      So, you wont always have outward symptoms. (some people only find out when they develop osteoporosis in their 50’s).

      Secondly, a gluten free diet may not be enough. (at least not in the initial recovery phase). When my daughter’s numbers turned out to be so bad after 3 months we made drastic changes that paid off in a stunning 6 weeks:
      we cut all grains and pseudo grains, except sprouted rice and sprouted quinoa (to reduce phytates)
      we minimized legumes, except sprouted lentils (to reduce phytates)
      we increased good yogurt and kefir
      we added lactoferrin supplements;
      we added human strain probiotics
      we added prebiotics including garlic tablets and plenty of onions;
      we added liver to her diet once or twice a week
      we reduced sugar drastically – honey only;
      we reduced commercially processed oils like canola and sunflower etc.

      In 6 weeks zinc went from 1.7 to 14 and ferritin jumped up over 20 units. We don’t know yet if the diet will be temporary or permanent.

      The point here is you have to go to Celiac sites (or if you want something more drastic go to http://www.scdlifestyle.com) and find a diet that gets YOU to heal.

      Good luck. It’s not an easy journey, but it is entirely fixable!

      Reply
  21. 21

    Travis

    Thank-you for the feedback

    Reply
    1. 21.1

      Bois Wilson

      You’re welcome. One other comment though. There are a number of reasons why the above diet may have worked, where the pure gluten free diet didn’t. Two possible reasons are important to understand:

      1) The standard american diet (SAD) – if you just keep to that diet, but substitute non gluten grains, you still end up with the equivalent of 1/8th of a teaspoon of flour (gluten) in your diet. Most practitioners think that’s ok, but the FDA has indicated that some Celiacs are sensitive to as little as 1/200 of a teaspoon of flour. Also, the studies are all done on recovered Celiacs – it is unclear what level a recovering Celiac (with Villi damage) will tolerate. So, gluten free may not be enough.

      2) there is considerable study going on now regarding Small Intestinal Bacterial Overgrowth (SIBO). Getting rid of the wrong bacteria may be a big factor for some Celiacs. Hence the comments I made earlier about Kefir, Yogurt and probiotics. Along with that concept is a concept known as “die off”. When you start succeeding (by diet or antibiotics) to get rid of those bacteria, you may feel much worse for 1-5 days, so give any diet more than a week before you judge it. The theory is that the dying bacteria give off gas that gives you temporary problems.

      Finally, another aside: if you end up with any lactose intolerance problems, always remember that for 95% of Celiacs who have lactose intolerance, this is only temporary. When the Villi heal, most (95%) of lactose intolerant Celiacs will start producing the enzymes that digest lactose, and the intolerance will go away.

      Good luck!

      Reply
  22. 22

    kiki

    I’m not sure what’s going on I just know every time I eat wheat 10 min. Later im throwing everything up for hours. And I’m blow up like a blow fish. Not much agrees with me and I have been dealing with this for years. Sometime with bloody Bowles and lots of pain. So I just don’t eat. Could it be celiac disease???

    Reply
    1. 22.1

      The Gluten Dude

      Do not wait another day. Get yourself to a doctor now!!

      Reply
    2. 22.2

      Staci

      Hi Kiki, I have been sick since April 2012, well severly ill anyway. I started having esophageal spasms that sent me to the hospital. I have had every test imaginable just about and all came up with no new information. I dropped 38 lbs in a few months and when I drank beer I was sick on the floor for 8 hrs vomiting, and when I ate food I was running to the bathroom. I took Vicoden just so I could eat food and not run to the bathroom. Bad thing is you pay for it double later. My Dr. just found out I am very anemic and doesn’t know why. I did some research and found out with my Fibromyalgia and Graves Disease (Thyroid) I have a pretty good chance at having Celiac. The more symptoms I uncovered in reading the more things fell into place with me and my illness. I have been nauseated every morning for months and this plegm in my throat is annoying, but I have started a GF diet myself and in two days it has helped already. I have woke up feeling refreshed and that is a good feeling. My Dr. is testing me for Celiac, but I do believe I am staying on this GF….too many bonuses after only two days. The brain fog, irritability, mood swings and depression…..are already lessening. I agree with The Gluten Dude…..get to the Dr. and be your best advocate….after all this is the only body we’ve got this time around!

      Reply
  23. 23

    Jessica

    It started in october 2012 when I had norovirus which lasted for 5 days where I had severe stomach cramps, nausea and vomitting. 2 weeks later I called my emergency doctor who came round to my house, said I had to get straight to hospital where I was admitted and had IV antibotics and I was in for 5 nights/6 days. When I was in I was under 2 consultants (private healthcare) who both weren’t very good and got me very confused as I wasn’t well either. I had the test where they put a camera down my throat and another one up my bum under sedation and nothing came out plus a load of blood tests, ultrasound on my stomach and an abdo MRI scan.

    I am now under a different gastroentoligist who is a very good friend of my boss whos also ran a load of blood tests and everything is coming up normal though my syptoms follow: Nausea, Upset stomach, Dirrohea, Cramping, Stomach grumbling/growling, Feeling very off, feeling generally unwell, constipation and dirrohea aswell as bad wind. . My boss is a dietican so I have been under her and seen her a few times whos suggested I add more fibre into my diet now I only eat wholemeal bread which I really enjoy I can eat up to 6 slices a day but I am still badly constipated, I feel backed up, always tired, a constant nausea feeling which isn’t nice because I have a fear of vomitting.

    Although I have had every test under the sun and I have been tested also for chrons diease but my gastro consultant is saying its just my IBS is playing up though I also have PCOS and havent had a period this year and I only had 4 last year but now after going to my GP with joint pain I have a vitamin B12 deficiency so I am taking medication for this.

    I am honestly fed up of feeling so full after even a very small meal, constipated, feeling unwell and having really bad wind nobody seems to understand what I am going through and my gastro consultant also gave me some medication to take to help me stop being so constipated which I am taking now but its not working my stools are really hard, I have to help it out then I get a very sore bum (sorry for details) but I am really getting fed up now and nobody can give me a straight answer which is upsetting me even more. I dread night time because I feel even more sick and scared to go bed & have been up a few times in the night with a bad upset stomach causing me bad stomach cramps and leaving me going to bed taking calpol (cant take pills and allergic to codiene) with a hot water bottle on my tummy then the next morning when I wake up I feel sick again. Its a problem which is on a constant loop now I am praying and hoping for an answer as this is really getting me down

    Thank you

    Reply
    1. 23.1

      Donna

      Jessica…you might want to start out by not eating that six slices of that wholemeal bread!!!!!!

      Reply
  24. 24

    Teresa

    Can someone have IBS and ADHA and celiac disease

    Reply
  25. 25

    Emilia

    I was diagnosed with celiac 3 years ago. I do not show signs of having celiac, and all my blood work and endoscopies came back inconclusive. I ate gluten free hoping for a solution for 2 years and then became curious to see what would happen if I decided to consume gluten. I have no reactions, no changes in my sleeping, my nails or hair, my skin, my stomach, no headaches…nothing.
    I am concerned to this day that when I was 18 I was wrongly diagnosed or that my parents accepted celiac as the answer to all my mood problems.
    I’m lost with what I should do. My GI refuses to do another endoscopy or more blood work.

    Reply
  26. 26

    bois

    Ridiculous, you have to have bloodwork done. Forget the GI – go to a GP. Check folate, iron, copper, zinc, D, TSH and vitamin D. Get them checked at least 3 times in the next 9 months.

    Reply
  27. 27

    Katie

    gastroparesis and celiac disease just came to be, as my diagnosis. 7 days in the hospital and multiple tests. i am having a hard time coming to terms with all of it. my entire life, i grew up eating pizza and peanut butter and jelly on white bread. started getting sick with multiple different issues at 16 and now at 30, celiac and gastroparesis?! im miserable. as of late, i have lost most the hunger feeling. i drink pediasure, just because it gives me some calories. im not losing alot of weight though because, i do not have the energy, want or will to do anything. i feel blah all the time, it frustrates my husband, as he can see that i just do not care anymore. he ends up restricting his diet, because of mine and that makes him angry. gluten free living also seems to cost, a heck of a lot more, then the simple processed food. i do not know what to do, or what to think anymore. i am sick of feeling sick. i think my family is sick, of seeing me sick also. to many (ER) run’s, to many years of different issues. i do not know what, is going to end up happening. i am just confused. good luck, to the rest of you, in figuring your issues out.

    Reply
    1. 27.1

      Gluten Dude

      Hang in there Katie. Sending strength your way.

      Reply
  28. 28

    paige

    Hi Gluten Dude,

    Anytime I eat cheese pizza my stomach sounds like it has a monster inside of it! I have IBS, does this mean I am lactose intolerant too? or have Celiac disease? I’ve already had a colonoscopy- hence the IBS- but should I be go in for more tests to rule out the lactose or celiac?

    Symptoms:

    – stomach has explosions inside when i eat pizza
    – gassy when i drink milk
    – constipation and diarrhea, dont know how thats possible but it is
    – weird stool, like mucus or oily stuff on the outside…fatty stool?
    – blood in stool, rare but has happened a few times

    I was told I was anemic when I was younger, not sure if I still am, and I due have fatigue like sometimes sleeping for 12 hours or not being able to make it through the day without a nap.

    I started eating better after the colonoscopy but have slipped back into old eating habits. Should I go back to my doctor to get more tests done or maybe see a dietician? Or do I probably just have IBS and should maybe start making little healthier choices…

    Thanks GD =)

    ~ Girl with a monster in her belly

    Reply
    1. 28.1

      Gluten Dude

      Hi Paige. You are asking a lot of medical questions which I simply cannot answer. Obviously, you’ve got something going on. Find yourself a good GI and tell him/her your symptoms. And yes…mention celiac disease.

      Reply
  29. 29

    Jenna

    Hiya,

    Reading through these comments its making me even more postive that i have a gluten intolerence/coeliac.

    For five years i have been back and forth to my doctor (well doctors…I tend to go from one to the other as they dont really help)…anyway, I was told five years ago i have IBS and since then have been on about 15 different types of tablets (no joke-maybe even more). None of these have helped. If anything it has just got progressively worse. A new doctor recently joined the surgery so I went to him and he suggested I have blood tests carried out for coeliac. I am now waiting on the results. I went back to see him a few days ago as i was advised to try out a gluten free diet and see how i felt. I advised him of the truth, I have been feeling much better, and he now says that he doesnt think it is coeliac but just a mild intolerance to gluten???? Yet i have still to wait on the blood results and then if if it shows as positive i have to get a colonoscopy.

    I just dont understand why this is taking so many years to diagnose. I dont ever get constipated, its just always me running to the toilet with diarrhea. I can go up to 5 or six times a day. My other symptoms include, really bad dizziness, terrible stomach cramps, sleeping all the time, headaches and really bad trapped wind. U would think i had been doing 1000 sit ups a day if u felt how hard my stomach gets.

    I just dont think i can cope with this annoying illness anymore. Its so frustrating. The main thing i worry about is if i get the results back, then go for a biopsy and its not this-what then? If i have to continue taking useless IBS tablets im worried it will never get better.

    As much as a lot of people dont think that is this serious and giggle when i always say how much i need to keep running to the loo, i dont think i can go through my life living near a bathroom just incase I have an accident. How embarrassing!!! :(

    I just felt i needed to vent! :)
    And also say that i feel for everyone on here experiencing all of these problems. Its a total nightmare. We should be the doctors for each other half the time. I know we would fo a better job than most of my GPs!

    Thanks, J x

    Reply
  30. 30

    Heather

    I do know that dairy can be an issue too. Maybe try to cut that out and see what happens.
    I have also found, for me, that “gluten free” snacks can have the same affect as gluten. So I try my best to whole unprocessed foods as much as possible.

    Reply
  31. 31

    Erica

    Last march i went and had my blood work done and came back as severe vitamin d deficency. My levels were a 7.2. Imstarted the vit.d pill once a week (50,000) and had my blood drawn again after 12 weeks and was at a 32. So i started doing the 2000 a day thing and had my blood done again and my levels dropped to 17. My doc said i needed to see a GI specialist because my levels were low and i was having alot of gas and bloating and heartburn. So i went and the GI said he was going to scope me on dec 3rd and do a biopsy of my small intestine for celiac disease. My question is “is it possible to only be deficient in vitamin d and have celiac? My cbc count was perfect as was everything but my vitamin d. My doc was shocked it dropped that much in 4 months and i was taking a suplement and outside all the time. I eat all the time especially pastas (sicilians always have a pasta lol) i never seem to gain weight, for a while there i had a hard time maintaining weight but got to 145 and have stayed there. Everyone in my family says they cant believe how much food i put away and i dont put on more weight lol they say imhave a great metabolism. Imalso do nap everyday lol.

    Reply
  32. 32

    Bois

    Absolutely possible to have just one thing low BUT, if you are Celiac it is just more likely that they haven’t found the other deficiencies yet. Definitely more and more Celiacs, however, are without any or without major intestinal issues. There is a long list of things to check, however, besides CBC: folate, B12, magnesium, ferritin, Copper, zinc, calcium to name just a few. Also, some of the ranges depend on the lab. In Canada many labs show any ferritin level above 11 as ok. If your level is below 40, then your ferritin may be dropping. Also, the level for B12 is often skewed by the fact that your liver stores 2 years worth of B12. Your level may be dropping fast. Make sure they check zinc, because that level has no storage component and is one that can’t be supplemented if you are Celiac.

    Still, to go back to your original question. Many Celiacs are discovered in their 50’s because their only symptom is osteoporosis. Some only have canker sores as a symptom. Some even show no symptoms. Vitamin D is a big one for Celiac, although ferritin/iron is the real biggie.

    Reply
  33. 33

    Erica

    Thank you for replying. I will have to ask her to check everything then. I am still not sure why the GI doc didnt order a blood test to see if i have celiac but he went straight for the scope. ( which i am nervous to get cause i have to be put to sleep) is the scope the most accurate way of telling? When imseen him he said he wanted to go in and check out my stomach and take a biopsy of the small intestine.

    Reply
  34. 34

    bois

    In Canada the gold standard for diagnosis is the blood test followed by the biopsy. You really need both. There are so many people that have needed more than one biopsy before getting the evidence of the disease. I would go to a regular doctor and ask them to order a blood test for you. Make sure it is both sets of endomysial antibodies. Frankly, the endoscope procedures are so much the bread and butter of the GI’s living that I think they just ignore the blood test. It is a good test. Unfortunately, if you get a negative, the negatives are not as reliable as the positive, but it’s still a good test. Getting both the test and the biopsy is best. Make sure the GI biopsies at least a dozen sites when he is in there. Speak to him ahead of time and find out how many biopsies he is doing during the procedure.

    Reply
  35. 35

    Irfan Ahmad

    hi i am a celiac patient from pakistan.I have been diagnosed with celiac about 3 months ago since then i am on a gluten free diet.Its not easy to be on gluten free diet here.People have no awareness about celiac disease and all they do is laugh at you when you tell them that you can’t anything with gluten in it.I have severe anxiety problems and when people make fun of me it makes me more sad.

    Reply
    1. 35.1

      AB

      Irfan,

      Don’t worry what other people think or say. If you feel better eating gluten-free, that’s all that matters. A quick answer such as, “No thanks. I will get very ill if I eat that” is enough.

      Did you know that your anxiety may be caused by the gluten and if you get it completely out of your diet it may go away?

      I used to have panic attacks before I went gluten-free and now they are completely gone.

      Kind regards,
      AB

      Reply
  36. 36

    Amy

    I just came here to say ‘thank you’. My husband and I have been suffering with what seemed like a ‘mystery’ illness for almost a year now. Itchy skin (rash that looks like poison ivy/dry/scaly on him, looked like pin pricks on me and intensely itchy). My husband has lost almost 40 percent of his body weight without trying. He used to be a husky fellow, now he is in a size 28 pants. Doctors claimed he had duodenal ulcers. Gave him a handful of prescriptions and sent us on our way.

    No insurance, so no way of getting tests needed done. So, here we are, a year later…still suffering symptoms (my husband is tired constantly..he says it feels almost like Mononucleosis) with an insatiable appetite (we even thought we had worms, ha ha).

    We are constant gluten eaters. Breads, pastas, refined sugars. I realize now that we must start taking our diets seriously. The only way to heal completely is from the inside.

    I will be making an appointment for BOTH of us to be tested.

    Love this site, and I’m gathering a TON of information. Thank you!

    Reply
  37. 37

    AB

    OMG. When I read some of these comments I want to scream!
    So many physicians are so IGNORANT about celiac disease that it’s pathetic. You know your body better than anyone else. If you are having bloating, abdominal pain, migraines, tingling in your arms or legs, problems remembering stuff, the list goes on and on, DEMAND that they test you for celiac disease. You must be your own advocate! If I hadn’t been, I wouldn’t be here today. One gastro told me I had Ulcerative Colitis. The next one said, “No, I don’t agree with that diagnosis. You need to have your gallbladder taken out. No tests. No nothing. Just ripped out my gallbladder. I got sicker and sicker and lost 58#! I finally left town, where if you have more than a hangnail or strep throat, you’d better leave, ’cause you’re gonna DIE. I did and 5 minutes in that gastro’s office sharing my symptoms, I was told they would order a celiac blood panel. Two days later, I got the news…my #s were off the charts. An upper GI/small bowel biopsy confirmed the diagnosis of celiac disease. I had celiac for 56 years before being diagnosed! My gastro was horrified that my previous doctors had not done a blood test. No one should undergo surgery as a first resort. FYI: You should always have the blood test AND the biopsy, which is the gold standard of diagnosis. However, beware that the tests sometimes can produce a false positive. I know personally someone who had this happen and when tested 6 months later, it was positive. I also know of people who have had a negative blood test, but the biopsy was positive. IT IS IMPORTANT THAT YOU NOT REMOVE GLUTEN FROM YOUR DIET BEFORE BEING TESTED OR YOU WILL NOT BE ABLE TO BE DIAGNOSED. Once you are diagnosed, learn all that you can about celiac and the gluten-free diet and cross-contamination because even a small amount of gluten (yes, even a crumb!) can make you very ill. If celiac disease is not diagnosed early on or if you continue to eat gluten after your diagnosis, you are setting yourself up for serious complications like infertility, other autoimmune disorders, liver failure and even cancer. Do yourself and your family members (yes, it’s hereditary!) a favor. Get tested!
    Be your own advocate. If your dumb ass doctor won’t run the test, find someone who will. If your test comes back negative, then try eating GF and see if you feel better. If you do, there’s your answer. Some people have additional food sensitivities that may still pose a problem, so I recommend keeping a food journal. Write down every single thing you eat and any adverse reactions so that you can reflect back on what may be causing your problems. Maintain a positive attitude and focus on the many naturally GF foods you still can eat and all of the wonderful GF substitutes we have today! For those who started eating GF before they learned that they shouldn’t because it will affect the test results, I wouldn’t advise doing a gluten challenge in order to be tested. Once gluten is removed from your diet and you are feeling better, you will be even more sick if you introduce it.

    Reply
  38. 38

    AB

    Correction on my previous post. Sorry. In line 15, it should have read false-negative. I’d like to blame it on celiac brain fog, but I’ve been GF for 5 years:0)

    Reply
  39. 39

    60 plus

    just retired at the end of 2013 and the second week of January I started getting a very bad case of diarrhea but I only got the diarrhea every 2nd or 3rd day, in between I was having regular bm’s , this went on for 6 weeks and I tried all kinds of things, including going GF, ( I stopped eating dairy about 5 years ago, gave me the worse gas pains.) finally went to the doctor and he did 3 tests on a stool sample , but it was from a regular bm. tests were all negative, for 2 weeks after the test results came back I was fine. I ate whatever I wanted, no acid reflux, no diarrhea, no gas pains. Yesterday, I was nauseous all day, a glass of OJ made me feel better but then last night I had even a worse case of diarrhea and I was so tired yesterday that I was asleep at 0930 last night.
    I gotta say, I’m not enjoying my retirement I will be going back to the doctor,, he did indicate that a colonoscopy would be next on the agenda.

    Reply
  40. 40

    jennie

    hi my 5yr old daughter has headaches stomache ache vomiting all quite bad for the past 3 yrs been in and out of hospital since she was 2 on a weekly baseis had the celiac test done but came bk negative but all her symtoms fit to celiac disease and crohns she had endoscopy came bk with her antrum inflammed waiting for the other one to be done to check her lower intestine track her esr levels high she now under nottingham q m c as she had to be transfered there as lincoln hospital just kept saying we will have to ring nottingham today my daughter gone bk to hosptial as she has had another episode again

    Reply
  41. 41

    60 plus

    I had my colonoscopy done a couple of weeks ago and it came out fine, I had a blood test done for thyroid problems, my mom and my daughter both have thyroid issues, but that came back negative. I was so sick today and it came on me so quick. My stomach was upset and I thought that I better go to the bathroom before I go out. I did not have the diarrhea but I just kept going and going. I started to feel nauseous and I got cold sweats. I managed to get to bed, I laid there for 2 hours feeling nauseous with cold sweats. And then I was fine, I feel weak but I’m fine

    Reply
  42. 42

    Rach

    Hi
    About 3-4 years ago I started feeling really tired, ill and depressed as well as having severe constipation, abdominal pain, backaches, rashes on my arms etc. I would get sharp stabbing pains in my stomach on and off for days. Constant wind etc. I was blood tested for coeliac disease which came up positive. We found it due to irregular bowel movements and severe anemia and vit d levels. I later had a colonoscopy and endoscopy and was confirmed coeliac. I have been on a strict gluten free diet for a year now and not feeling any better. Went and saw a dietician and did some bloods. Came back with being vitamin a, vitamin d, b12, and zinc deficient. Iron levels were still low and my thyroid gland hasn’t had it good. My faecal calpotrectin test came back with very high inflammation levels which suggest chrons or ulcerative colitis disease (inflammatory bowel disease) im booked in for a colonoscopy and endoscopy in 8 weeks to review and hopefully find out whats going on. Have been taking vitamin a, vitamin d, zinc, idonine and probitotics supplements as well as having 6 iron injections and b12 injections and still feel awful. Really messing with my work life etc. Have been waiting for my gastroenterologist to get back to me for a month now and haven’t heard anything. Has anyone else had a similar issue to myself?

    Reply
  43. 43

    Tamera

    Dear glutendude,
    I stopped eating gluten approximately 3.5 years ago Without being tested as after reading a book about celiac disease it seemed the book was written about me. Within 2 weeks I saw amazing differences in myself and how I was physically. Over time I noted drastic changes for the better, even seeing my adult onset asthma totally clear up…and have not needed or used an inhaler since I stopped eating gluten. Weird or? Anyways, my question to you is … is it too late for me to have appropriate testing being that I’m pretty much gluten clean? I am nearing 50 years old this year and feel concerned about my villi and any damage that MAY have occured, as well as concern that perhaps my self diagnosis wasn’t completely correct as my father has Crohns and I’ve read that sometimes these two can be similar? Or? Please help me as I’m a bit lost on what my options are … Thank you!

    Reply
  44. 44

    Melissa

    You have mouth sores, so although you are starving, you can’t eat much :(

    Reply
  45. 45

    Alysha M

    Is there a reason that migraines are not listed? Is that more associated with an allergy/sensitivity than celiac?

    Reply

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