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Shelley Lorraine Cross, 46, of Losantville, died unexpectedly Tuesday, April 10, 2012 at IU Health Ball Hospital in Muncie following a lengthy but courageous battle with Celiac Disease.

Did I know this person? I did not.

But a few things struck me when I saw this article.

Mainly that she died after a long battle with celiac disease.

Look…I’ve done all the reading. I know how dangerous celiac disease can be. I know it can lead to other very serious illnesses, especially if untreated.

But even knowing all of this, I never quite relate it to a disease that can kill you.

I’m not sure why I feel this way.

Is it denial? Perhaps.

Five years ago, when I was diagnosed with celiac disease, bladder cancer and a pulmonary embolism in an 18 month stretch, I really thought it was the beginning of the end for me. I honestly just didn’t think my body would last another few years.

But here I am, five years later, and I’m not going anywhere. My body sure feels like death sometimes, but overall, I would say my health is good.

But this article was just a stark reminder that celiac is a very,very serious disease that can indeed kill you.

This is one of the main reasons I want the conversation to move away from the gluten-free diet and onto the disease itself.

And I know I can be a wise-ass. I know I rant about the celebrity gluten free craze and I can be lighthearted about the disease at times.

Perhaps this is my own form of therapy.

But for those of you who may take the disease more lightly than you should…

For those of you who still cheat once in a while and indulge yourself with a piece of pizza “just this one time”…

For those of you who think dying of celiac “can’t happen to me”…

Please remember Shelley Lorraine Cross, change your way of thinking and lead a long healthy life.

Oh…and the other thing that struck me when I read this article?

She was 46…the same as me.

RIP Shelley.

121 thoughts on “Cause of Death: Celiac Disease

  1. My mom has had Celiac Disease her whole life. Unfortunately, it was not diagnosed until she was in her forties. By this point she had developed many health issues including :
    Pancreatic issues – She was in the hospital for 2 weeks regarding this The surgery to remove it is too risky but a drop of alcohol will kill her now.
    Severe Acid Reflux – She had been to the hospital many times on this one.
    Osteoporosis – The acid reflux medication counteracts any Calcium she intakes

    I don’t thinks Celiac itself can actually kill you. In my opinion, it’s all of the other issues that come along with Celiac Disease and the list is endless. It’s a scary situation. People need to understand the seriousness of the disease a lot better.

    • Agreed Sandra.

      Though since the other diseases people get stem from their celiac disease, it is in essence the celiac disease itself that can kill you.

      • Actually, you CAN die from the disease itself, although it may not be common. Several months after first being diagnosed and being gluten free, I thought it would be okay to cheat just a little with a piece of toast. I thought the worst that would happen would be intestinal discomfort. When the gluten hit my bowels, my blood pressure bottomed out and I went into anaphylaxis shock. Luckily, we keep Epi-Pens on hand for bee allergies. So, if you have CD, don’t think you can cheat once in awhile. It CAN kill you.

  2. This is a must read post because it amazes me that people don’t take coeliac more serious. Some do, like yourself and I do very much so, but there’s lots of people who don’t and I find that astonishing.

    I know that some think I overreact about cross contamination and eating out blah blah blah but not to mean to be overly dramatic, but I’m just trying to stay alive here.

    Well done on your fight, you’re quite clearly a winner Dude!

  3. Nicely put, GD. Yes, celiac disease can overwhelm the body in a multitude of ways. It’s so sad that the one autoiummune disease in which we know the trigger (food) is still impacting people’s health, even causing death. Very sad.

    Thank you for addressing this.
    Melissa

  4. I am newly diagnosed 2 weeks ago. I personally take this disease so seriously that I am paralyzed with fear every minute of the day. I find articles like this that plant the seed of fear extremely disheartening and are putting those of us looking for hope and wanting to be healthy into a downward spiral of depression and hopelessness. I don’t know if those who don’t take it seriously would even be reading these articles, but it’s very frustrating when looking so desperately for a silver lining and keep coming across articles like this and ‘why all celiacs are slowly dying’. I want to live a long and healthy life and once again feel like that is not possible no matter how careful I am because I was diagnosed after 34 years untreated. I really hope that isn’t the case.

    • Try not to get discouraged Natalie. My intention was not to spread fear…just awareness.

      Most celiacs live a long, prosperous life. Stay 100% gluten free and you increase your odds even more.

      Please read through some of my other posts as well which can hopefully help you in some way.

    • Natalie,

      I remember the first few weeks I was diagnosed – it’s a scary time, and your world is flipped upside down. Believe that in time, you will hold all the control and be able to breathe easy. If you keep your house properly set up, and find only the best places to eat out in your area (talk to people or google the hell out of it), you will be safe and healthy. It’s all about being mindful of yourself, instead of fearful. You can absolutely do it, and if you vow to take care of yourself, you will be healthy. Some days might suck, but in the big picture, you have a diagnosis and you don’t have to suffer alone. There is a beautiful gluten free community, keep reaching out. It gets better with time. Way better.

    • Dude – my 13 y.o. was diagnosed in May this year (Coeliac Disease) and has been coping fairly well. Unfortunately she ‘found’ your article this evening and now we are dealing with a very teary, distressed girl.
      Coping with finding GF meals when away from home is chjallenge enough without finding thsi type of message, probably only being read by people who are already aware of the rsiks – just not wanting to be reminded of it in such an ‘in your face’ way.
      We agree with the need for more community awareness – but how to deliver the message is probably worth a second thought.
      Regards fromDown Under

      • Hi Eric. Not quite sure how to reply except to say that I’m sorry my article made your daughter upset. Certainly not my intention when I write my blog posts.

      • Eric, yes this article might be a little scary but I’m a 24 year old female and am sitting in my hospital bed; with many questions your daughter probably has! Is this going to kill me? When am I going to die? When am I going to get cancer from this? Am I ever going to have a family of my own? Should I drop out of college and enjoy the time I have left? It’s an extremely scary thing! It’s not easy to deal with! I at this age even can’t imagine the rest of my life dealing with this disease!! But I’m going to have to figure it out! And your daughter needs to know the truth about what is going on in her body even if it is scary! I understand your upset I wouldn’t wish this disease on my worst enemy! But what does every little girl dream of ( I’m even still dreaming of some of them!) the day you turn 16, going to college, nights you will never forget with friends, finding your prince charming and starting a family. She needs to understand what this disease might do to her and the battles she will face. No matter if its this night or a week from now or 10 years there are going to be a million tears and hills that need to be climbed. I have my bad days and start crying all the time and I’m 24. I may never have kids, I might be diagnosed with cancer in a year, all the way to I can’t go to beer and pizza at the local bar with all my college friends. This article is the smallest thing your going to have to deal with!

        • Hi Justine, I’ve only just found this website but I hope you might still read my comment. I hope some of your anxiety has been relieved since you posted your comment. If it’s any comfort, I was diagnosed at 35, which is a lot of damage that had been done to my system.

          I started trying to conceive 4 months later, and 2 months after that I was pregnant. I had a normal, happy pregnancy, and now my daughter is 3 1/2. She may or may not have celiac disease – she’s tested regularly and if she has it, I feel confident that I can keep her on a GF diet and deal with obstacles as they arise.

          All the best to you.

      • Wow. I really needed to read this. I have been pretty strict with food since diagnosis 3 years ago. Lately, not so much. I’ve been eating chocolate and lollies with wheat in them! Silly? Now I have this nasty virus that is not really improving – I never get cold and flu, so I googled ‘if I’m coeliac and eat gluten can it weaken my immune system?’ I’ve definitely had those extra illnesses that begin with coeliac and I feel like an old woman rather than 26 sometimes!
        Thank you, I needed to read this.

  5. I’ve only been diagnosed with coeliac disease since January this year, but I am literally terrified of cross-contamination now, and I’m sure people think I’m ridiculous for doing things like buying new spatulas, not using a communal toaster, having a separate food cupboard… the list is endless…

    This post is a bit scary to read but very true, and people need to know to take coeliac disease seriously, I already have a level of osteopenia from being undiagnosed for so long.

    I love your blog so thank you for posting this, people like you raising awareness really does help.

    • You’ll just have to ignore what others think or say. I’m sure most “normal” people think celiacs are paranoid. Nope…just trying to keep our health (and our sanity).

  6. Well said… I have more autoimmune disorders than I can count,not to mention cancer cells were developing in my GI tract by the time I was diagnosed. Please take this serious… I too never think of the dangers of death from this disease.

  7. Thank you for posting this. While I’m not tempted to cheat, we all need these reminders to keep on the right path! It is such an encouragement to continue taking this seriously and making the best choices.
    A short time after my celiac diagnosis 2 years ago, I was preparing for a trip to MT and researching my gluten-free options. I came across this article, and it really was an eye-opener and I remember it often. I thought you might like to read it too.
    http://www.montanaceliacsociety.com/newsletter2.htm

    • to clarify by “this article” I mean the first story on that newsletter page, about the woman with celiac disease that passed away. What a sad story and a reality check.

      • Thank you so much for sharing that. All I say is holy sh*t…that is tragic. And it seems quite preventable. Sad story for everyone involved.

    • Thank you for sharing this article. I printed it for my 16 year old daughter. She was diagnosed with jra when she was 7, diagnosed with fibromyalgia at age 12, irriatable bowel at age 13 and after and endocsocpy and colonoscopy at age 16 was diagnosed with celiac disease.

      I think her problem has acutally been celiac disease since she was 7 and she had just been misdiagnosed along the way.

      With so many diagnosis and guesses on what to do to help her I think she hasn’t taken the celiac disease very serious.

      Its been 2 months since diagnosis. She is doubled over in pain tonight. Discovered she drank diet coke which can contain gluten and had pam sprayed on pan when making eggs. Also contains gluten.

      It seems like when the pain leaves she begins to start taking a few risks. I hope this article might be the eye opener that she needs.

      The gi doc told her that she had a very severe case with lots of damage to small intestine and not to eat a morsel of gluten.

      Teenagers always thing they are invinceable. It makes it so much harder. We through out all the gluten in the house and have gone gluten free as a family…but she is at an age that she will have independence to make her own choices.

      Thanks again for sharing the articles and the seriousness of celiac disease. Im hoping it will make a difference in my daughters life.

      • I wonder sometimes how I would have handled it if I were a teenager. Probably like I handled everything else at that age…awkwardly. But teens do have a sense of invincibility about them. I wish you luck.

        By the way, Diet Coke is gluten free.

        • Hmm. I don’t have a diet Coke bottle in the house to look at the ingredients, but the first thing my doctor took me off was caramel coloring. Diet coke is brown because it has caramel coloring in it. Run from this and Root Beer and Gingerale. Had migraines for 32 years before going Gluten Free five years ago. Good luck!

    • Thankyou Michelle. Guess what? Last summer I had some kind
      of attack on my body. I swore it was after being in the sunshine.
      I guessed Lupus and was tested. Blood tests said no to Lupus but
      blood work in that test showed also body has slight inflammation.
      My doctor said nothing about it, my naturopath mentioned it.
      That was a DH reaction with spots showing up on both arms.
      Sunshine activated it. Had DH for 25-30 years. Never showed up
      once on my arms in that time.

      In DH patients those antibodies are dumped under the lining of the
      skin, where they sit for days, months, or years. Then one day some
      thing triggers a reaction (sunlight, iodine in a cleanser, pregnancy,
      etc.) The original deposits, however, occur due to the intestine being
      exposed to gluten/gliadins. Thanks Dr. Joseph Murray
      Game Set Match

  8. What concerns me as well are all the undiagnosed – and the ones who think they have a gluten problem but keep eating some here and there. I have several friends who know they have issues with it and I believe none have been tested. They just usually avoid it. .. usually being the key word. There is so much misinformation out there and testing for it needs to improve. What if all the people who are just gluten intolerant should be just as careful as those with celiac disease?

    You know I am one of the undiagnosed or maybe I am just gluten intolerant. I have issues with the “just” part as I know gluten makes me deathly ill.

    I have to be just as careful as you. How careful do those with gluten intolerance really need to be?

    Wendy

    • It’s a good question Wendy. I’m not sure even the medical community has an answer to it yet. If in doubt…do without!!

      • I went through all the blood test the colonectomy and everything one test came back positive another came back negative. The doctor repeted the blood test agian and that time the one that was positive was negative and the other one was the opposite as well.
        It is very fustrating not knowing what is going on with my body I know that when I do eat foods with Gluten Iget horrible sick. But the only answer the doctor can give me is that I have potential celiac disease or irrital blowl syndrome. It is so fustrating.

        • You could have a gluten allergy or a gluten intolerance. Either way, it seems you and gluten should no longer be friends.

          • I agree. The doctor just called me actually and wants me to have more blood work done. These test are expensive and for him to just tell me I have a posibility of celiac disease it rediculous. Gluten and me are no longer going to be friends =)

            • More blood work?? If he tested for celiac the first time, the blood work would’ve shown what he needs to see. Then a follow up endoscopy is needed to confirm/deny the diagnosis.

              Easier said than done, but make sure you get a GI who understands celiac.

        • My first test came back negative but second one came back positive but my doctor said the only way to confirm it for sure was to get a biopsy. You must get one otherwise you’ll be storing up medical conditions for the future. I’m 56 and was devasted when the biopsy came back positive. Food is my God so I’m struggling to get used to it. There’s a lot worse that can happen so lets be grateful. Take care and remember to get that biopsy

          Mary

  9. It can be a terrifying overwhelming disease…but it can be controlled and each of us has the power to do so, simply by WHAT we choose to put in our bodies. I have… CD and Gluten Ataxia…this is a serious disease but one the we do really have power over!

  10. I just stumbled upon your blog. I was diagnosed three years ago w/ “off the charts” numbers as well. I have to say, I love your no holds barred approach. I can get a little annoyed by the “look at me now” people touting how great there life is after switching to a gfree diet (I’m happy for them) but most days I live with a “this _____ sucks philosophy. I also struggle with additional health issues after getting off gluten. So needless to say, I am pretty happy to have found your site. I think we all need to stick together (I know very Kumbiya) and bring awareness to the disease itself.

    • Thanks Kara. Just read your story on your website. Something else how it was misdiagnosed for so long. Glad at least you know now.

  11. very tragic, indeed. Yes, people don’t realize how serious this disease can be. The GI doctor who diagnosed me with CD also told me I could cheat once and awhile! Needless to say, that was the last time I saw him! But for GI doctors to say that is beyond pathetic. Many of them see CD as a joke. This has got to stop!

    • I just did a whole bunch of reading about gluten ataxia because I was not familiar with it.

      Serious indeed!

  12. Itz sad how many people do not understand cross contamination… I hv been told to just “take the bread off” to “just dnt eat the crust” Not that easy! :) My family for the most part is super supportive! My son n husband hv educated themselves so they know what is “hidden” gluten in everything frm foods to personal care to our pet food!

  13. We just found out about a month ago that my Husband has this and we can’t get him to eat the right stuff they told him not to eat wheat but it is so hard to find stuff that is wheat free and has taste he is a very picky eater can anyone advise me what to do to help him … Plus what happens when u eat wheat. Do u throw up or what happens I don’t know a lot about this ..

    • It’s very overwhelming in the beginning. Not just for those diagnosed, but for the entire family. I’ll back up with Lissa said. Educate yourself. If your husband is going to fight going gluten free, you’ll need to step up your game. It sux…I know.

      And the reaction to eating gluten is different for each person. Personally, I’m sick for a long time. Stomach pains, extreme lethargy, brain fog…the works.

      Please get him to take it seriously…

      • I was just diagnosed with “mild” UC and “mild” Celiac Disease. I dont understand what that means but ive been so afraid to eat anything. Ive dont the running to the whole foods store and bought two weeks worth of food, snacks and desserts. im skinny as it is and all i want to do is gain weight and become healthy. i just want to get back to my normal self. running, pushups, etc. i cant do what i use to do anymore. i tried out for the cadet school years ago and i use to be able to do 7 pushups. i cant even open a jar of apple sause for my son without being out of breath. i cant even run after my son without being out of breath. i just want to be healthy. where the hell do i begin?

  14. Ambra: best thing to do is get educated! Be informed and if u hhave a question look it up! Find his favorite meals n start experimenting ways to make them gluten free… taste will b slightly different but not bad. Good Luck n try to have fun cooking…be creative!

    • I agree with Lissa. The more you educate yourself the better. The more you know about what makes his favorite foods tasty the easier it is to make them taste good w/o gluten. I now have my husband (a very picky eater) eating my gluten free bread and he isn’t celiac. Press on.

  15. GD- YES! Thanks for the attention on the actual disease.

    Yes, it needs to be taken more seriously – no cheating! Think of gluten as swallowing rat poison (not the helpful post PE warfarin variety though!) :) I’ve heard that eating some gluten even as infrequently as every 10-14 days will prevent the gut from healing.

    And to the others – there are SOOOO many wonderful gluten free items that are naturally gluten free, and some very amazing substitutes. Think of this as a way to explore new things that you’d never try before – I’ve found some of my most favorite foods since I’ve been diagnosed with Celiac!

  16. Also… watch in ur lip glosses, toothpaste, make up, chap sticks, hair spray soaps shampoos… no the gluten molecule can’t go thru skin BUT if get it in your mouth or on ur lips…there u hv it!
    I did nt take it serious for a long time and I ended up physically incapcitated for a while even mentally… I was tested for MS and even ALS…My muscles were effected my cognitive abilities… I went 100% GF and I hv improved :) I still hv relapses n I can tell immediately if I get glutened! It is important to b GF if u hv CD. Damage occcurs evry time gluten is consumed whether there are symptoms or not.

  17. Appreciate the post – it can be so disheartening how frequently people don’t believe this is an issue, even many doctors!

    I still remember being in the ER and having a doctor huffing because I made them check on my medications for gluten. She told me that ‘a few days of discomfort’ wasn’t a problem. The gal had no clue that I get neurological damage to go with the gut, nor did she bother to ask.

    I frequently wonder if hearing it so often called ‘gluten intolerance’ in the past has made a lot of folks view it as though the symptoms are similar to lactose intolerance, when they are SO different.

  18. This is the first time for me to visit your site. My sister is a diagnosed celiac and forwarded me this article on celiac disease causing death. All my children display symptoms of the disease although they have never been diagnosed. My experience with the disease is that it is not enough to go gluten free. The underlying problem with Celiac disease is an overpopulation of bad bacteria in the intestinal tract which causes leaky gut syndrome and a weakened immune system. You must tackle the issue of the bad bacteria overrunning your body first, and you can only do that by eliminating all sugar/grain/lactose/starch in order to starve the bad bacteria and kill it off. Unfortunately when you go gluten free, you are unknowingly increasing the amount of sugar in your diet that the bacteria thrive on. When you eliminate gluten you usually will replace the wheat, barley, oats and rye with gluten free grains which are higher in sugar like corn, rice, potatoe starch, tapioca starch, etc… I highly recommend researching the SCD diet. We have had great success with Elaine Gottschall’s book ‘Breaking the Vicious Cycle’. I will not lie to you, the diet is very difficult to maintain. You basically have to eliminate all polysaccarides (in the forms of sugar, grains, lactose, and starch) from your diet for 2-5 years depending on your severity of health issues. You can eat honey and most fresh fruits. You will have to make everything from scratch, no packaged processed foods. It is difficult but very much worth the effort and sacrifice. My 12 year old daughter was litterally wasting away before my very eyes while on a gluten free diet. She suffered from extreme fatigue, shortness of breath, stomache pain whenever she would eat, constipation and blood in her stools, extreme weight loss, constant yawning while standing on her feet so much so that she felt like she would collapse from a simple trip to the grocery store. She immediately felt better on the SCD Diet. She regained her appetite (ravenous), bowl movements returned to normal, no more stomache pain, she began putting on the much needed lost pounds, her shortness of breath is improving, and her energy level has improved. Please research the effects of sugar on the body especially if you are a Celiac or are suffering from Chrone’s or Collitis. You can read more about the diet at SCDiet.com or pecanbread.com. If you are a Celiac, a gluten free diet could be deadly from the simple fact that a gluten free diet is pumping way more sugar into your system than you even realize, feeding the bad bacteria in your gut,and causing them to overrun your intesinal tract and weakening your immune system regardles of the fact that you have removed the gluten. Gluten allergy is a symptom of the bigger problem of an overloaded immune system.

  19. I’ve been diagnosed for 18 months now, and am managing much better then I was when first diagnosed but I still suffer a bit from the “poor me” syndrome.
    Especially when I was recently diagnosed with Impaired Glucose Intolerance and now have to cut out sugar as well!
    But reading this post, it gives you a bit of a fright, doesn’t it and reminds you what it is all about.

  20. In addition to the scarier things we hear about from gluten-related-complications, like colon cancer and gluten ataxia, we also have to recognize that it is a root cause of long-term malnutrition.

    Picture the kids from underdeveloped countries, not only the starving ones, but also the ones whose bellies are swollen from malnourishment. They are getting a quantity of food, but it’s not of the quality to provide their bodies with the appropriate fuel to grow and thrive.

    This is where we are, those of us who for years suffered with no knowledge of the source of the problem. Years of malnourishment, gaining or losing weight, but dwindling away in energy and brain-function.

    None of us would expect those same children, from underdeveloped countries, to immediately bounce back after a mere few months on a healthy diet. We think of long-term developmental delays, permanent brain damage from lack of nutrition, physical malformations, bone density issues, difficult digestion, food rejection, and the list goes on and on. Why, then, are we so hard on ourselves, as we struggle to find a semblance of health after we finally identify the gluten as ravaging our bodies?

    I think this obituary is a stark reminder of the battle we wage on a daily basis. Each bite we take, each drink we swallow, each product we use (maybe we don’t swallow the shampoo, but if I have an open cut on my toe, or my cat scratched my hand before I washed…the gluten is entering straight into my bloodstream…hello brain fog! Though with my derm herp, it’s not an option anyway.), brings us to fight another day, or closer to the grave.

    We will inevitably be ‘glutened’ inadvertently, but when it is our choice, there really is not an option…Fight the battle, and surround yourself with people who will help you fight!

  21. I was diagnosed January 25, 2011. The first month I was overwhelmed and didn’t know what I could eat. The dietician I went to confused me further with talks of quinoa and a host of different flours (buckwheat?!? But I can’t HAVE wheat :) ) so that my head was spinning. By the second month of being GF, I was suffering what they called “gluten whiplash” and couldn’t even keep water in me. I lost 40 pounds in 8 weeks, had to go to the hospital for IV and the nurses were amazed how even that made me run to the bathroom, but not for reasons that you’d think… Anyway, some kick-butt probiotics and I straightened out once more, but it was not looking good for a while.

    My husband is so supportive. He is my champion. We both take this seriously and some people think we are fanatics. We are not, we are just trying to keep me alive for a good many years :)

    Am I tempted to cheat? Of course I am. Do / have I ever? Honestly I am proud to say I have never. Not even one little crumb. Is it difficult? Not anymore! So many foods are naturally gluten free. I can make anything gluten free without fear of cross contamination. Anybody can, with proper care. We are healthier, my husband and I, than we have ever been in our lives. Thanks to Celiac disease… OK, I am being sarcastic. But in cutting out gluten we also cut out fats and all the nasty, un-pronounceable chemicals in processed foods. We eat whole foods, foods whose ingredients we can not only pronounce but know what they ARE!

    My adult children are trying, bless their hearts. One of my daughters took an in home celiac test at my insistence and it came back positive. She says it is faulty and refuses to see her doctor. Says she doesn’t have time. I worry and I try to talk to her, but she is 29 and married and thinks she knows best. But she takes my disease seriously, makes certain when I am at her place I am not cross contaminated. Go figure.

    My long winded (sorry) post / rant cloncludes to make this point: it is possible to become completely gluten free, to feel 100% healthy, and to do it simply. I am always happy to help, to share ideas and recipes anytime.

    RIP Shelley Lorraine Cross.

    • Awesome Dee. Appreciate you sharing your story.

      It’s funny how so many people remain in denial. Can’t say I blame them as they see what we must go through. But they could have a long (or short) road in front of them.

  22. http://www.medpagetoday.com/AllergyImmunology/Allergy/15972

    So the thing is – and I feel it’s SO important esp with the discoveries the Ataxia researchers have been finding – that a diagnosis of coeliac isn’t the divider between life and death / sickness and health.

    anyway – the point is – don’t blame the celebrities – who are actually helping our lifestyle (and probably their own health) inordinately by creating demand/supply. Blame the doctors and medical community for not taking diagnosis seriously enough – one such said coeliac it wasn’t worth diagnosing without significant STOMACH pain/problems – when I e-mailed back to say that it was his job to provide this sort of gate-keeping and that although people might not take the advice – it was his duty and the duty of all gastroenterologists to give the correct medical advice – he responded by simply taking the comment off the net.

    If we want people like this woman to not die of coeliac – or to needlessly suffer symptoms like their bones crumbling under their own weight, or cancer, asthma, arthritis, ataxia… We have to stop this Coelaic is rare crap – and get the best health for everyone – BEFORE the really bad symptoms take hold.

  23. Hey everyone what if you have celiac disease and you dont really feel that much pain should you still take it serious? I am 20 years old and my doctor told me this about 3 months ago. At first I did the diet and I notice a few changes. But it does not seem like anything I should worry about but now I’m reading all of these post and I’m thinking about it a lot. So can someone help me out please

    • Yes hunny you need to take it seriously. You will really regret it later if you dont…. Be happy that you were lucky enough to get diagnosed BEFORE you were in pain. You have the opportunity to repair the damage before it gets really bad. A lot of people, ,like myself, go to the doctor because of the pain and later discover they have celiacs disease. Even if you dont feel pain now you are causing damage to your body every time you eat food containing gluten. You are young and your body has so far been resilient. But this wont last forever.

      All my life favorite foods were breads, crackers, pizza, pretzls, ramen noodle. I went to college and lived off of these foods (and beer) for 4 years before the pain started. When i was 23.

      Talk the doctor that diagnosed you , he / she will tell you the same thing. You have to be 100% gluten free everyday of your life or else you are damaging your intestines

  24. If you have celiacs disease DO NOT eat out at a restaurant EVER. I know it sucks. It took a lot for me to transition. I have worked in a lot of restaurants over the years – restaurant workers do not take Celiacs disease seriously . A lot of them think its a joke( along with lactose intolerance). The only allergies they care about are those like nut allergies that will cause the person to drop dead in their dinning room. People with gluten or lactose allergies usually wont feel ill right away. I have celiacs and when my coworkers made these kind of comments i tried to correct them- but they continued to tell me that “its not that big of a deal” “this is half wheat flour half gluten free flour, thats good enough, tell the customer its gluten free”

    It really sucks but when your life depends on NOT eating gluten- dont trust anyone to prepare your food , unless they truly understand how important it is.

  25. Help!!!! I have been on wafarin for 4 years now due to 2 DVT’s in my left leg over a 10 year period, the warfarin is precautionary as I dont fit the profile (i’m a 46 year old ex smoker, slightly overweight but have been up 11 mountains including Ben Nevis in the last 2 years, I eat well and keep active) I started on a diet in jan due to bloating and an increase in weight due to the stopping smoking 2 years ago, part of the diet was NO bread, recently I have had some and suffered BIG TIME with pain and bloating, a negative Celiac test came back, Ive been gluten free for 6 weeks now, and accidentally had some some last week and was ill for 2 days, so gluten intollerent I think, no big deal but now my INR has shot up to 4.5 from a regular 2.5 for 4 years, it seems my gluten free diet has now affected my blood clotting…. I cant win!! now got to re-regulate my INR again and my bowels still arnt right!!!

    • A negative test on a low gluten diet is only to be expected – you could test for the genes – but you have effectively tested yourself by going on a “gluten challenge” and then having an overwhelming response in the face of gluten. You need to be gluten free – and if that doesn’t work entirely go casein free as well (the molecule is similar and according to studies 1/2 of all coeliacs have a similar response to casein as they do to gluten)

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027711/

      This article is basically noting a supplement of vit K was needed for someone with coeliac and poor vitamin k due to low coeliac diet compliance.

      So cheating on the coeliac diet is probably making things worse (apparently for some people it can be worse than not going gluten free at all) – it’s not directly related but the principles are likely the same – hopefully it will help clarify things for you

      • a j
        many thanks for both responses, after some research it seems that the gluten free diet has in fact lowered my vit K intake hense racing my INR to 4.5, I’m now taking a smaller dose of wafarin for this week prior to another test on Friday, I will carry on as normal eating my normal levels of food containing vit k and get the INR back to my target 2.5, I will also get my vit K levels tested. I would rather take less wafarin with no Gluten, as long as I get my correct INR levels its a win win situation, I dont like wafarin!! and gluten gives me problems. I’m also due to see my GP in 2 weeks after my blood gets back to normal to check everything else. It just goes to prove that what you eat effects your blood. I’m now thinking that if I was Gluten free 10 years ago perhaps I would not have got the DVT, as mentioned I was 36 and very fit cycling and walking and at 6ft was then 14 stone…never fitted the DVT profile!! doctors in the UK do not understand blood enough, I work on logic and my logic suggests that my blood is very susceptible to certain foods, our bodies are very complex and we cant take them for granted by eating anything we like!! i will let you know my findings, thanks again
        Alex

    • oops – now what I didn’t say and really should is that you shouldn’t just go ahead and supplement with vit K – maybe a multivit with very low levels – or eating fresh foods – but overdosing on vit K in your condition could in fact be very dangerous.

      It would be best if you can to find a doctor who can help – goodness knows most Western doctors are poorly informed about these issues so it might be quite a search.

    • Alex…I too had blood clots. Actually had pulmonary embolisms and really should have died from it. I was on Warfarin for fours years and finally after finding no cause of the clotting and having a good INR for a consistent amount of time, they took me off the Warfarin, saying the risk of being on it equaled the risk of being off it.

      It’s something to discuss with your doctor…

      • Thanks for your reply, I’m thinking that gluten has a serious effect on your blood, hence my changes, I’m wondering if i had been gluten free then I would not have had the clots in the first place, your not AB positive by any chance? just a thought, my brother has a book about different foods suiting different blood types, its quite thought provoking!

  26. I’ve found this forum a few days ago. I’ve read a lot of your articles and suddenly started to actually understand what was happening to me.
    I was diagnosed about six months ago and now I’m trying to do my best to avoid G. My doctor says, that considering my symptoms, I could have been ill (I mean in a acute form) for more than 10 years. I’m 22 now. I met a very good doctor – one of a kind in my country (hello from Ukraine), he almost instantly knew what I had. Most of the “doctors” that work in municipal hospitals don’t even think (or maybe don’t even know?) about CD.
    I read all this stories, when people suffer for decades and get diagnosed only by 30 or 40 and I think that I’m quite lucky to be diagnosed at this age. My doctor says that my stomach may recover in 2-3 years, but even now I feel much better – I stopped losing consciousness and get everyday diarrhea, pain and constant dizziness. I really hope that people would elude what happened to Shelley!

    • Catherine . I read your post and was amazed when you said you lost consiousness and diarea dizzyness. The reason that this caught my attention is because when i was younger in my teens i had all those problems . Blackouts fainting dizzyness. constant diarea. no dr could ever figure out why i had these symptoms. now in 2009 i was dx with celiac amoung a million other problems so manny i do not have energy to tell them all at this time but anyhow if that was the early celiac symptoms then i have likley had this most of my life or at least the last 45 years. What do you think is it possible i have had celiac disease that long ?

      • Dear David. If ever you were diagnosed with CD, it’s for sure that you had it all of your life, because it’s not the condition you “get” – it’s genetic. You could only have it in passive form. And I think that my symptoms showed up not in the early stage but in 10 or 12 years of being sick. That what caused my visit to another doctor. If you had all that in your teens then I only can assume that you were sick then just as much as I was.
        I’m sorry to hear that you have many other problems. I read that constant poisoning (gluten in our case) causes many other maladies and I can only commiserate you in your problems. I hope you’ll get easier with them and get better as much as it possible.

  27. I am new to the site, loved all the discussion, feeling not alone. In response to the person whose Dr wants more blood work, they may be checking for vitamin, iron deficiencies. I was recently ddiagnosed with celiacs. Never had gi symptoms. I have been type 1 diabetic for 27 years. (I’m38) I am a nurse and knew there was a connection but didn’t want to look into it. I had noticed weight gain, fatigue over the past year but just figured it was normal aging. I went to donate blood and hemoglobin was 8.6….which led to more labs. I was deficient in several vitamins and iron, ferritin as well ad positive for cd. Endoscopy showed significant damage to my intestine. I wonder now if I have had this forever, did it procede the type 1 diabetes so many years ago. Also, been learning a lot about vitamin d deficiency…. am I vitamin d deficient only because of the celiacs, malabsorption pt was that an underlying cause. Yesterday, I let my guard down and consumed gluten. I got the worst stomach ache I have ever had, threw up. After just a couple months gluten free, and never a gi symptom, I realize how fast it does effect me.

  28. I am very interested in reading and comunicating or hearing any information about celiac disease that may be poisted or shared . I have been dealing with celiac a long time. and am always open to any new info .and would be happy to share my personal expierence with this condition.

  29. It took about years to diagnose my illness, and I became mostly bedridden at the time. Tired of seeing Dr after Dr, I almost gave up… Then all of a sudden several different Drs I was seeing discovered it about it all about the same tme.

    My family and gastro Dr.s told me I would never get better from celiac disease, however I can put it in remission by remaining on a gluten free diet and to take it as serious as possible. I have done just that. It took awhile to get to the place that I am today, but I am leaps and bounds better than I was even just a year ago. But just ingesting one crumb can take my health far backwards quickly.

    Celiac Disease is POTENTIALLY A FATAL disease… don’t be shocked, it’s true.

    By no means does this mean to stop living, enjoy your life, surround yourself with people you love, and they you too and continue on.

    It’s a sad note that this women struggled with her disease, hopefully more people will sit up and take notice as it is your life at stake.

  30. I have yet to received a 100% diagnosis of celiac all mi GI said was that my blood work showed an allergy to wheat, I had the colonoscopy and endoscopy and neither showed any damage. I want to know if there is any way to get a 100% diagnosis, all my GI said was too go gluten free and if i felt better then there was my answer, wth!!!!! The thing is that i do feel better when i cut out most carbs but dealing with this has been very depressing and its consuming me alive! Nobody understands, everyone thinks I exagerrate and sometimes I’M embarrassed:( the information that I have read so far is very helpfull, I appreciate everyone writing in with their stories.

    • ADRIANA. My celiac disease was diagnosed via biopsy taken during a upper endosopy from the small intestine examined by a pathologist. the blood test is usually used by doctors as an indicator of possible celiac . but in all reality is not a true indicator of celiac . All people would benifit from a glutin free diet . I would like to communicate more with you on this celiac if you like . Take care TTYL David

      • YES I DO BELIEVE THAT I WOULD BENEFIT FROM A GF DIET BUT THE THING IS THAT ITS EXTREMELY HARD (AS YOU ALL KNOW)!! I GUESS MY REAL QUESTION IS, IF I ONLY HAVE A “GLUTEN SENSITIVITY” WILL IT KILL ME IF I DON’T ADHERE TO A GLUTEN FREE LIFESTYLE? I HAVE RESEARCHED AND RESEARCHED AND I’M LEFT CONFUSED INSTEAD OF INFORMED! I SOMETIMES READ THAT IF A PERSON HAS A SENSITIVITY TO GLUTEN THAT IT WILL NOT DAMAGE THE SMALL INTESTINE AND OTHER ARTICLES WILL SAY THAT THE SAME DAMAGE OCCURS WEATHER A PERSON IS SENSITIVE OR HAS THE ACTUAL DISEASE OF CELIAC. THANK YOU FOR ALL OF YOUR RESPONSES I APPRECIATE IT BIG TIME! @DAVID YES I WOULD LIKE TO COMMUNICATE AND READ ABOUT YOUR EXPERIENCES. THANK YOU GLUTEN DUDE FOR ALL OF YOUR MUCH NEEDED INFORMATION.

  31. Adrianna,
    One can be gluten intolerant, sensitive and not actually have Celiac’s. Perhaps that is the case with you. If the diet helps, don’t worry if you have the actual diagnosis, just follow the gf diet and don’t be embarrassed.

  32. I am a Celiac and was diagnosed several years ago. Reading this obituary reminds me of my mother’s death in 2001 of pancreatic cancer. My mom died 4 years before I was diagnosed, and after I found out what was wrong with me, I realized that my mom undoubtedly had Celiac Disease too. I felt so horrible knowing that she was suffering like me, and nobody took her seriously because doctors never checked for celiac. She was told she had IBS, and this and that, and given medicines for all the symptoms, which of course served no purpose. The worst of it was, she was told over and over again that she needed to take tranquilizers because her problems stemmed from her mind. As we Celiacs know, it’s difficult enough having an invisible disease without being told it’s “all in our heads”. I’m wondering if my mom’s pancreatic problems and cancer stemmed from decades of untreated celiac disease. In my heart, I feel her immune system ended up killing her. In my gut, I’m disgusted with how the medical community treated my mother, and how I am now not taken seriously regarding this serious disease. I recently had a flare up (not from being glutened, but by stress) that lasted for 3 weeks, which kept me home bound and mostly bed ridden. How can that not be serious?
    There is a serious streak of inherited, in my opinion, mental illnesses in my family, especially schizophrenia, depression and bipolar disorder (which killed my brother). I know these have been connected to auto-immune system diseases too.
    Thanks for listening. And thanks for being here GD. Your knowledge, humor (especially the sarcasm and cultural critiques), support and trials of your own are a bright light, and have helped me many times. Thanks to all of you for sharing and suggesting and advising. You are all blessings.

    • So sorry to hear about your Mom Denise. There is bipolar in my family as well. Is it all connected? Time will tell.

      Wishing you health and happiness.

  33. I was officially diagnosed with celiac disease in October after 5 years of symptoms my doctor decided to dismiss as nothing more than hypochondria. He found it hard to believe that at the time my symptoms started that a 33 year old female could go from being relatively good health to utter deterioration. If anything that in itself should have been an indication something was wrong! I experienced aviral conjunctivitis of both eyes and shortly after developed a hemifacial spasm on my right side of my face. From there symptoms of diarrhea, lactose intolerance, extreme fatigue, weight gain, increased anxiety, joint pain, and the most bizarre symptom dental enamel issues which prior to all these symptoms I had never even had a cavity! I pleaded with my doctor to test for anything and everything to make any sense of why I was feeling so terribly. I ended up having an mri of the brain due to the unexplained facial spasm which came back normal. An emg of my face which was extremely painful only to be told I definitely had a spasm! Duh.. Didn’t need a test to confirm that. I started having issues with my gallbladder and in the midst of losing 20 pounds and unable to eat my doctor still refused to look deeper. He recommended I lose weight and exercise! I self referred myself to a specialist who found my gallbladder to be barely functioning and surrounded by adhesions. Within a week I had my gallbladder removed and although it didn’t solve all my issues the doctor who removed it stated he had seen cases like mine before and it was he who recommended I explore the possibility of testing for celiac disease. He told me to try a gluten free diet for a few days to see how I felt. I started the trial on a Thursday by Saturday my diarrhea of 6 times a day was literally gone! I went back to my family dr. nd again was dismissed as since the gallbladder was removed, that was why my diarrhea was improving. This was the same dr who said I didn’t have gallbladder issues and just needed to lose weight. Long story short I spent the next 4 years battling symptoms that for all intent and purposes made me feel I was losing my mind. I was in my mid 30s and felt like I wanted to die. Everything hurt I never felt well and was exhausted. The diarrhea, cramps, abdominal pain were daily life. My muscle and joint pain made me feel like I had the flu but a flu that never went away. I was beginning to live in my dentist office as cavities and enamel issues were now second nature again till this all started in had never had a cavity! I also was having more frequent migraine headaches and couldn’t imagine living the rest of my life like this. In short if this was as good as it got I didn’t want to live like this. I began studying celiac disease and in September’2012 in self referred to a gastroenterology. On my initial meeting with him he said you are a textbook case for celiac. Although I had yet to be officially diagnosed he recommended a strictly gluten free diet and within a few days my gastrointestinal symptoms started to improve. Since my diagnosis in October I have continued to improve. My only question to fellow celiac suffers is does the extreme fatigue and muscle aches ever truly go away on a gluten free diet? Although I am feeling more like my old self prior to the onset of the disease is a complete remission of symptoms possible?

    • Oh, Jen. What happened to you is horrible!
      I’m on diet for nearly a year. Though I didn’t have so much intensive symptoms as you did, but I can tell you, that my organism is recovering. And it’s all about the diet for me. I keep it strictly. My blood-work improved, my stomach doesn’t hurt anymore after each meal… Well, there’s a lot to tell. I suppose that for you it’ll take some longer time to recover and probably you already have some Celiac-related conditions that need to be managed, but you can take on my word and PLEASE keep diet. And also you have to keep with your new doctor, because only a good doctor can advise you in questions relating your recovery.
      Please, get better! And start again enjoying your life without pain!
      Wish you health and a good mood=)

    • Hello Jen. So sorry to hear about your experiences with your symptoms, and with your doctor. I was diagnosed several years ago, and found that it took about 2 years to feel total relief from the more severe symptoms, but I did get better! Just know that you can look forward to feeling better as time goes by. I admit that I have flare ups, mostly due to stress. Sometimes I’ll have a shoulder that hurts for months on end, and then be fine, and a year later, another painful joint experience. I also have terrible bouts with diarrhea, and not because I’ve been glutened. But that also passes, thanks to the medications Lomotil and Hyoscyamine, which I feel are essential for a Celiac to have on hand.
      Patience pays off, and finding great support from places like The Gluten Dude will make your journey less difficult. Good luck, and listen to your body.

  34. I was diagnosed with IBS when I was 16 and now my new doctor seems to think I was Misdiagnosed and is running test for celiac disease because of all my on going symptoms. I do not know much about this and honestly I’m a little scared now. I’m 22. How long before the blood work comes back. I literally had them done today and honestly I was wanting an answer but now I want to go back to not knowing. Although I am sick of “when are you due” :(

    • It shouldn’t take too long Jennifer. I would think a couple of days at most. Let us know what happens with the diagnosis.

  35. All this makes for interesting reading. I would say, don’t cheat, even little amounts of glutin can damage the intestines over time, even if not making your immediately ill. I have several celiacs in the wider family.

    A lot of confusion still exists about the difference between allery and intolerance – I have seen in some of the comments on this page! Intolerance to things like glutin (you) and lactose (me!) are digestive disorders – the body can’t tolerate the sustance, can’t break it down and tries to reject it. Digestion causes long term damage and complications. Lactose intolerance can be just as serious, I have had it since a baby and lost several sections of bowel due to it – mainly because I didn’t realise milk is hidden in lots of products. You also read stuff about “little amounts won’t hurt you, see how much you can tolerate”. I’ve seen that in articles about both coelic and lactose intolerance – don’t believe it!

    Allergies, by contrast, are immune, whole body responses. My mother and her sister both have wheat allergy, not the same as coelic disease. If they accidently ingest, they become unconscious, have breathing difficulties and need immediate injection of anti-body or will die, hence they carry injection pens. They cannot eat wheat in bread or other products or cornflakes etc, even if glutin taken out (as it is for coelics) as still contains other parts of the wheat they are allergic to.

    My advise – eat processed foods very rarely, stick to known foods like eggs and meat, fish with lots of veg and fruit, make your own sauces if you have to have them, watch for hidden wheat as a thickener in fruit juices – it doesn’t have to say its there on the label as such a small amount, but its still there! My mother is 89 and veryl fit and healthy, other family members are coelic and will outlive us all! .

  36. It’s far more serious than most people know or will ever realize. I’m currently 35, and only recently have come to find out that I was born with celiac disease. I was mis-diagnosed until 33, nearly 34 to be honest. I’ve been seriously under weight my whole life. At roughly 6’2″ and 138 lbs at my peak, more like 125 normally, for a guy, I’m tiny. I tried everything to gain weight, to no avail. The weight room, the exercising, the conditioning, all while feeling terrible, to no avail. The bowel issues are too tough to discuss with anyone. Even after going gluten free, I live on a constant diet of HUGE doses of anti diarrheal’s to deal with the issues. I haven’t felt even remotely ok in over 20 years. Needless to say its been a long, rough, painful road. I fear it’s too late, but I really am trying. I have numerous symptoms pointing to far more serious issues, but the fear of a lethal diagnosis is paralyzing. I appreciate the article, wish everyone the best, and hope you all can overcome this dreadful disease. Spread the word, as early diagnosis is truly the best hope. Not that it can’t be overcome with late diagnosis, people do it all the time! Personally, as a person who lived on pizza and beer his whole 20′s not knowing any better, the late diagnosis is a death sentence. Take care all, sorry to be the downer, but I’ve yet to find a place to let it out where anyone will understand me, guess you’re it.

    • For some coeliacs (studies show – approx half) milk is also an issue. It was the hardest thing for me to give up – but in the end there was no choice. They weren’t as bad as yours, but the stomach issues flared up now and again until I started to be more careful about avoiding it.

      To be honest in many ways it was harder giving up than gluten – but boy does it reduce the food bill!

      I would also check out vitamin deficiences B’s, D, zinc etc and some healthy bacteria – there are milk-free formulations (including for IBS) at your chemist. And if that doesn’t start working within two or three weeks you should go to a competent doctor – just in case it is more serious.

      Good luck :)

  37. Hello,

    I’m recentlydiagnosed with type 1 diabetes which landed me in the icu & nearly killed me & I’m wondering if I should also test for celiac. I have had Ibs symptoms for years but tests for that were negative then I believe. I feel I am mildly lactose intolerant & I take pills for that. I follow a very low carb Dietrich controls my BG in an almost normal range. I’m also wondering if you have a list of foods which contain gluten? I find this very confusing other than the obvious like wheat grains. I have no idea if gluten is causing some of my Ibs symptoms I have eliminated bread, pasta, rice, potatoes, cakes, milk, any starchy vegetables & any other high carb foods. I cook almost all of my own food from whole foods. I have I increased my fat& protein. I noticed that premade gluten free products like cakes/cookies are very high in sugar/carbs & would be bad for me. I only eat yogurt & heavy cream & eggs for dairy. The only wheat product I eat now sigh bran crackers.

    • The thing with milk is that for many coeliacs it’s not just just a lactose problem – although for many of the luckier ones it can just be a lack of stomach villi holding the bacteria that digest lactose — for others like myself it’s a casein problem (it’s a molecule that can react in the same was as gluten) – & something no current pill can do anything about. You can (and I did ) get away with heavy cream and a bit of butter occaisionally – but it only made things gradually worse and worse and finally had to give up.

      So at least at first – to see if it helps I think it’s worth doing some version of GFCF or paleolithic diet. – You can always re-introduce foods to see if they are ok once your stomach settles down. –

      I think avoiding processed foods is definitely the right thing – More complete list of things to avoid if the labelling is shoddy – but there are also a couple of numbers…

      But seriously you should probably think about reintroducing some of the starchy vegetables – to make up for all the other starches you would be eating.

      Avoid Foods
      Barley
      Barley malt/extract
      Bulgur
      Couscous (yes this can be corn but it is often wheat)
      Durum
      Farina
      Faro
      Kamut
      Malt
      Matzo flour/meal
      Orzo
      Panko
      Rye
      Seitan
      Semolina
      Spelt
      Triticale
      Udon
      Wheat
      (Wheat) bran / germ / starch
      Also – if you cross contaminate on casein – I would definitely avoid oats.

      I know it seems horrible, but being sick is worse. And don’t hate the potato – it’s probably not so much the cause of diabetes so much as how it’s cooked. Good article http://healthhubs.net/diabetes/should-diabetics-eat-potatoes/ “To sum up, diabetics should be able to incorporate small servings of potatoes into their meals (up to 150g or 1 medium potato) without any adverse health affects. When possible, potatoes should be cooked the night before, then reheated the next day (or eaten cold) with the skin still on. New potatoes should be selected when available while waxy varieties are preferable to floury ones.” And this on veges is quite good too. http://healthhubs.net/diabetes/vegetables-for-diabetics-what-to-eat-and-avoid/ :) Good Luck. I can’t stand the thought of other people having to feel their way around this stuff for years getting sicker and sicker when the scientific information IS actually available – but don’t blame the docs – often they don’t get what’s going on becayse it’s just it’s not something people can hear until they are ready to deal with it.

      • Thanks for your thoughts- I think I’m going to have further testing done at some point. I don’t eat any of the foods you listed except the bran crackers & only have them 1-2 per week but I can easily eliminate them.
        It would be hard for me to also eliminate the heavy cream, butter & eggs etc or the yogurt. But I may try that at some point. The thing is with low carb you need more fat & protein. I have type 1 diabetes whic is an autoimmune condition where the body attacks the beta cells in the pancreas & destroys them- the trigger is a virus not food. type 1 are more at risk for other autoimmune conditions such as celiac which is why I’m wondering if any of my ibs symptoms could be due to a reaction to gluten because I have noticed that I often sneeze and have other symptoms such ss diarrhea when eating wheat. I eliminated the starchy vegetables & potatoes due to my
        Bg going too high with them… I have to take too much insulin & even then my bg spikes too high- I I simply can’t eat them anymore. High Bg will kill me for sure so that is the priority in my Diet -a problem with alot of gluten free foods for people with Diabetes,whatever type, is that they are very high carb…we can’t tolerate high carbs- I’m particularly sensitive… I only eat 30-50g per day.

  38. I have not posted for quite a while . I would like some advice from anyone who can give me some. What do most other people with celiac eat to have a balanced diet ? I think my diet is not working so good. I am doing good not eating any glutin and dary cuz I am lactose intolerant. But sometimes it seems like I have gotten some contamination cuz of the way I feel and my digestion but I am sure I have not. Does anyone else expierence this ? Thank you all and hope everyone is doing as well as possible.

  39. I want to thank you for this article. It helped my husband understand just how serious it was to make our entire home gluten-free. Our 3 year son was recently diagnosed after many doctors having no clue. Doctors need to handle patience better and believe in a mother’s intuition and when a pediatric GI specialist said my son had “nothing” and that he would “out grow” his symptoms, I knew I would stop at nothing to get him diagnosed. He was at the point of vomiting and having blood in his stool and gas! This was what he was to “outgrow?” Like HELL! Then as you put, the emphasis is on a GF diet and not on the Disease, it’s very disarming and dismissive for those who do not know what the disease entells. We are lucky that he is so young and we can get him well adjusted to a GF world, so that he will be a well adjusted kid and adult. He already asks, as if second nature, “Is that gluten free?” He’s a good kid and makes me proud every day. Since his diagnosis and the GF diet his echzema has cleared and his cradle cap he’s had since birth is finally fading.

    Thank you to and to all that post. It is always reassuring when one is not alone in a battle.

    ~Jamie
    Proudest mom of a Celiac Toddler Ever

  40. So I was diagnosed in January of this year at 20 years old and personally I can’t bring myself to take it seriously. I feel horrible when I eat foods with gluten. Sometimes my heart races, my stomach feels “bubbly” and I have to run to the bathroom at least 6 times a day, everyday; however I still don’t take it seriously. I’m a very picky eater as it is, so when they told me I had to stick to a gluten free diet for life I cried. I cannot do this. The food is not the same. I guess I need more motivation to eat gluten free ? I need help. This is not easy :(

  41. Hey Everyone,
    I happen to be looking up an article on Celiac’s and Immune response when I found your blog. Thank you Gluten Dude for shinning a spotlight on the potential dangers that come with having a disease like Celiac’s. I understand completely the struggle that comes with having friends, family and even doctors not being well versed in the disease and/or downplaying it’s overall seriousness.
    Years after my diagnosis, I still get extremely frustrated that Celiac’s can be so misunderstood. Not only is it an uncomfortable disease to have (socially, physically and psychological) but it has the real potential to lead to some rather frustrating and scary health problems.
    On the upside, however, it’s really important to keep in mind that not everyone positive for Celiac’s is going to end up getting seriously ill from it (thank goodness). Much like with other autoimmune disease (Lupus for example) there is a spectrum of possibilities. Many people can have Celiac’s and be rather ‘healthy’ and others can develop symptoms like nerve damage, dementia etc etc. The take home message here, is that just because you have it, does not mean you need to panic! A really great resource for understanding the disease (especially for newbies is a book by a Dr. Greene, who runs a Celiac center in NYC), ‘Celiac Disease: a Hidden Epidemic’. I highly recommend it. Cheers!

  42. How much glutin and for how long would a person need ti ingest glutin to get a posttive blood test for glutin ? The reason I ask is I was dx as having celiac disease by a gastroitrrolosist now am not able to see this dr anymore due to insurance provider restrictions. I went to a diferent dr and they did a simple blood test for celiac it came back negative this was about a year ago now I am having lots of stomach and bowel problems , I was totally glutin free the last time I saw this dr so I was thinking I should start eating glutin again before my appointment which I have done and needless to say all the really bad symptoms have returned with avengence My Dr. apt. is on the 15th of Aug. do I need to continue eating glutin or will there be enough glutin in my body to get a pos. test so the dr can treat me correctly like the celiac patient I am

    • Hey David,
      a few things….
      1) Antibody blood tests for Celiacs can show up negative (that’s partially why doing a Antibody panel is so important vs. just one test for one antibody).
      2) The gold standard for a celiac diagnosis is really an Upper GI endoscopy of your duodenum. Thing is, lots of GI issues have the same symptoms as Celiacs….IBS, colitis, Fungal, infections, Crohns etc. It is not a good idea to just go off one doctor’s opinion vs. hard test results. Especially because 9 outa 10 doctors still think of Celiacs as not a big deal, much like IBS….’easy’ diagnosis, and ‘easy cure’.
      3) you do not what to have Celiacs disease. All too often, people get frustrated with the results from their tests being negative and just say they have to disease…..try not to do this. Having celiacs predisposes you to a potential life time of other illness. You could very well have a gluten sensitivity, or an allergy to wheat (all have similar symptoms) but much different outcomes.
      4) You should not go gluten free until you have a diagnosis. If you do, a good GI doc will make you do a gluten challenge for a few weeks, and then re-do all your tests. Might as well wait until you know for sure what you’re dealing with.

    • If you’ve been diagnosed and gone gluten free for any length of time and you’ve reacted to a “gluten challenge” (in some countries this is enough to confirm diagnosis) then you have coeliac/gluten sensitivity. To get a positive test is a nightmare – I tried to do it for my kids – and they had just been on a low gluten diet (as a side effect of me being gluten free) and it was a nightmare – so hard to get results up past borderline but still negative. And by that stage so sick it wasn’t funny.

      So my advice would be don’t do it. You have already been dx’d and are likely to do alot of damage by the regime of the equivalent of 6-8 pieces of bread a day for 3 months – only to come up with an equivical diagnosis and need a “Gold standard” which still has a relatively high chance of a false negative (although not nearly as high as the blood test which if I remember rightly can have as high as a 30% false negative and therefore pretty crap as a screening test.

      On a side note scientifically the complex panels seem to be meaningless and predicated on the outdated assumption that coeliac is rare. False assumptions give you false results. Hence the high false negative rate. Antigliadin antibodies are a good thing to look for – and are also a good marker for other diseases including ataxia.

      So now you have two totally different opinions BUT if you hadn’t gone gluten free already – I would say get dx’d an official diagnosis is a great asset – because it so helps if you get stuck in the medical system, it also helps because they’ll test you to make sure your diet is complying (my stomach does that for me). I’ve seen people with “borderline” tests get sicker and sicker, the system encouraging them to keep on eating wheat until they get a positive test – and to what end? If its making you sick and the system isn’t working for you. Trust your own instincts – and remember eating gluten again after being GF is extremely dangerous for coeliacs. You also mentioned you were still having problems on a GF diet? Then please note that aprox. 50% of coeliacs have similar problems with casein (milk) and MSG and soy can also be problematic for some (a friend with dx’d coeliac has worse problems with MSG than wheat). Good luck!

      • Hey AJ,
        I’m really sorry to hear about your personal struggles with the disease, as well as your kids.
        Clearly, having small kids thrown into the mix can cause an issue. I agree with you about trusting your instincts.
        Please keep in mind that my posting was just a run down of issues with going GF and then being tested….just some information, not my personal story, and not necessarily my all my thoughts on the matter.
        This isn’t actually my personal opinion but rather a mixture of experience and advice from a Celiac Doctor. My opinion, is that people should and need to do whatever’s best for them and their family. What I wrote before was just some information on testing/thoughts about Celiac vs. Gluten Sensitivity vs. Allergy…as they are, of course, three different things with similar symptoms that can have different treatments/different outcomes, and therefore, having an actual diagnosis is important, in general.
        Best,
        Maggie.

  43. Maggie , You stated the gold standard test is upper endospy of duodenum. Well I don’t really know the meaning of duodenum but my first dx was based on biopsys taken from my small intestine during an upper endosopy sent to a lab and analized by a pathologist The biggest problem with being sick is doctors really do not know what to do . don’t understand .and stop listening to the patient or maybe you just need counciling. I have fibromyalgia in addition to my celiac I have lots of widespread pain pretty much always . My right lower leg hurt really bad right inside the bone I went to my dr many times had every test she could think of to do this went on for months. My dr told me that the pain I was feeling was likely in my head and I probably needed counciling or psychiatric intervention was the words she used. I went to a diferent dr and he had ordered me a mri of my back . Well they found a cyst about 2inches in diameter pressing the nerves coming from my spine . I eventually had surgery with spinal fusion to fix the problem. I am so tired of living at the mercy of people who call themselves Doctors.

    • Hey David,
      I’m SO SORRY to hear about your struggles with your health, and I can completely relate to almost everything you said (even the nerve pain).
      Duodenum is just another word for small intestine….it’s the part of the intestine that is responsible for most of the absorption of Vitamins/Minerals. Most Celiacs, show damage to this area (although, that is not always the case, but usually), and this is partially why we tend to have ‘absorption’ issues :)
      Sounds to me that your upper GI biopsies are positive? Yes? If that’s the case, then you got your diagnosis!!
      I, like, you had been to MANY Doctors who were condescending, lacked knowledge about the condition, and were downright rude. I did this dance of jumping from specialist to specialist (I’m talking like 15 in 2 years on top of physical therapy etc.) before I was finally diagnosed a few years ago (I mentioned repeatedly that I should be get a blood test for Celiacs, but was told because I wasn’t ‘wasting away’ I could not have disease). I can agree that it can be VERY frustrating, paying to see a specialist, only to realize that they have no idea what they are talking about. I actually had one Doctor confuse autoimmune with allergy ;) For me, at least, I found that because of this I had to do a lot of the ground work myself…..for example, with nutrition. Really discussing, and looking into what supplements might be a safe and good thing for me to be taking to help with overall inflammation, systemic neuropathy and intense muscle pain. Exercising, every day (even just going for a walk) to help heal my body. You get the idea :) These things helped me feel more proactive about my condition, and give me some hope, however so small.
      I went to Dr. Fasano at the University of Maryland Celiac Center (he is now located in Boston associated with Harvard) after years of every specialist in the book (particularly Neurologists and Rheumatologists) telling me they had no idea what was wrong with me. If you can, I would highly recommend trying to go see Dr. Fasano in Boston, or Dr. Green in NYC. Both run Celiac Clinics, and both are considered experts in the field in the United States. Personally, I went because of my neurological symptoms I struggle to keep at bay. Dr. Fasano told me something I found rather helpful, and maybe you will too. He said we are like houses. We are like houses that have been on fire. First, you have to put the fire out. Second you have to let the smoke clear and see all the damage. Third, you have to rebuild. Depending on what part of the house was damaged, depends on if it can be rebuilt and how long that would take. He told me that in my situation, because I have some pretty serious nerve damage, that the good news was I could heal. The bad news was the he would be surprised if I would heal within 5 years (if at all).
      I have searched far and wide, and have discovered a Neurologist who is very familiar with Celiacs and has been really helpful….if you’re in the DC/Annapolis area, I’m happy to forward his information to you.

      As a side note……for people who have kids that are having issues with getting a diagnosis. There are some know gene pairs that one must have to have the potential to develop Celiacs. To be clear, just because you have these genes doesn’t mean you will develop the disease, but, you could. On the flip side, if you don’t have these genes, you cannot develop Celiacs. I know some parents find this information helpful. Genetic testing is painless (at least on your body) and can be really helpful, especially for little kids. The only problem is, it can be expensive, and insurance doesn’t usually cover it.

      To all my fellow Celiacs out there….keep fighting :) Remember messages boards are great places to share information, and
      have spirited debates, but, really, we are all in this together.
      -Mag

  44. David,

    I tested neg years ago for celiac and for lactose intolerance- I never had the more sensitive test for lactose intolerance done. I can tolerate greek unsweetened yogurt but regular milk, ice cream etc. I need lactose pills. I don’t eat them anymore now cause I’m lo carb. I was hospitalized dka with type 1 diabetes last year and I’m now on a lo carb diet. I have eliminated all grains now and that has helped my bg control. I think that I do have gluten sensitivity too since I would get diarrhea and gas and sneeze when i ate wheat. Anyway, try eliminating this stuff and see what happens. I would also try reducing carbs, sugar is just bad for you whole body in general. I also have ibs, overall my symptoms seemed to get better on insulin but now they’re a bit worse again because I added in a magnesium supplement I think.

  45. Mag,
    I have been struggling for years (like so many of us) and bounced around to more specialists than I could count. I figured out my problem on my own from a tip my son’s pediatrician gave me when discussing our family’s health history… I told her I was just diagnosed as pre-diabetic and since I am thin and so are my kids, etc. she pressed further and I told her I also had autoimmune thyroiditis and she said I should look into Celiac Disease. I did a ton of research and without the cooperation or help of my own docs, I went on a gluten free diet (and I’m mostly dairy free except for a bit of cheese) and I haven’t looked back since. Problem is, 2+ years now into being gluten free, my neurological symptoms persist. They actually get worse and flare in the summer and I go into “remission” each winter. I was hoping my pre-diabetes would also go away but it has not. I have been getting my Thyroid Peroxidase Antibodies levels checked since back in 2006 they were off the charts at >1,000 on my lab results (lab stops counting if greater than 1,000). In 2012 I had it checked after being gluten free for 1.5 years and it was 477. I just had it checked again in June 2013 after now being gluten free for 2.5 years and the number continues to go down, now it’s 393. It’s slow progress but it is PROGRESS!!! :o )

    I still have a lot of neurological symptoms that I feel are definitely gluten ataxia. Funny how not one of my docs picked up on ANY of this a few years back when I was at my lowest regarding my health… I was seeing a urologist, dermatologist, opthalmologist, rhuematologist, neurologist, my family doc and a physical therapist all at the same time. I ditched them all, one by one, when the only thing pushed on me were scary drugs (after a gazillion tests were performed). I decided to stop seeing doctors and start doing my own research, thank God for the internet.

    Thanks for the info. To everyone who comes here looking for support and answers… I support (and salute) you. I hope you find the answers you need on your quest for good health. Keep the faith, stay strong and trust your instincts. YOU are the expert on YOUR body and don’t let any doctors make you feel crazy or tell you otherwise. Good luck to everyone! :o )

  46. Being proactive in my health is something new for me. I have been seeing the same Dr for years, Every year same thing… try to lose weight, and you will feel better. Long story short he retired and I got real sick lost 21 Lbs in a little over two weeks.Along with a host of other issues. I was recently diagnosed with Addison’s Disease, in searching for the sudden onset of adrenal crisis I was informed I have Celiac’s , along with corn and soy allergies. I am now 22 days gluten free, and on med’s starting to feel more human then I’v felt in years. For those of you that are still thinking Celiac Disease is something you can deal with in passing or just ignore …please reread this site. My daughter was diagnosed two years ago. still a struggle for her every inch of the way.

  47. Hi,

    I am almost positive that my 13 year old son and I both have Celiac Disease but getting diagnosed is not worth it. My son has Graves Disease as well and we are just finally getting him under control after almost 3 years since the diagnosis. Once those symptoms were under control, I started seeing newer symptoms that were always there but were not as scary so I didn’t pay attention to them as like I should have. The GI doctor did a blood test that came up normal but I am still positive he has it. I did cut the gluten back for 4 months but he is not on a strict diet. Could this be a factor? I also read that a thyroid disease like Graves could give a negative test to Celiac as the antibodies are suppressed due to his immune system being exhausted.

    As for me, I always has a slight goiter ( my son’s is bigger) and every time I was tested, it came back normal. Again, I feel that the primary care did not do the right tests. I also feel like I have adrenal exhaustion and cut out gluten for 1 month and I felt great.

    Now that I feel we both have it, rather than staying on the gluten to get retested which is VERY dangerous for someone with Graves, I am going to go with my gut and just cut it out.

    Wish us luck!
    Bedette

    • Good luck – and good choice re not mucking around for yourself, the blood test isn’t very sensitive at the best of times (failing over 20% of celiacs) – but if your antibodies are out of whack it’s extremely unlikely to tick all the boxes – and the specialists should have known that – but they often forget to tell you you’re supposed to be eating wheat.

      The fact that your son is not on a strict diet could well be a problem for him – he’s unlikely to be eating enough wheat for a positive test and he’s almost certainly better off than he would be otherwise – but that doesn’t mean he’s not getting autoimmune damage by having gliadin and antigliadin antibodies running around. Maybe you could better convince him by getting him to agree that if he tested positive for antigliadin (this stuff is bad for autoimmune issues) then he should go completely GF or at least as low GF as he can socially handle. Whatever you do, try to make him a part of the decision as at 13 trying to force him into making a sensible decision may well backfire, especially if his friends are unsupportive. What a tricky time for you – stay well :)

  48. MAGGIE,

    I live right near the Annapolis area and would really like to know where to find the doctor(s) you mentioned. I was diagnosed with celiac disease when I was hospitalized last May. I lost over 100 pounds, my bones crack constantly, my joints are in pain, I have extreme pain in my abdomen, which has spread to the right side of my back, I’m bloated all the time, I have headaches, major vitamin D deficiency, rheumatoid factor that is at 59, I am exhausted all the time, etc. etc. When I was diagnosed in May, I was actually relieved because I finally knew what was wrong and I could finally take appropriate action. However, all the symptoms I had before have gotten worse despite the fact that I have eliminated gluten from my diet. I recently found out that my pancreas is inflamed and enzymes are elevated. I really need to find a doctor that can help me before it leads to something more serious. I’m 33 and still want children, not to mention a long life.

    I hope all of you get the answers you’re looking for. I wish you the best of luck and good health.

    Kindly,
    Angie

    • Hey Angie,
      I hope that this email finds you feeling as well as possible before the start of the holidays.
      I’d be happy to forward you my Neurologists information, however, from what you wrote it doesn’t sound like you have a neurological manifestation of Celiacs?
      Sounds like you just need a better general practitioner who can point you in the right direction maybe? Have you checked out the Celiac center at University of Maryland? They are a rock for me in the sea of confusing medical advice. If you’re in Annapolis to begin with, they’re either in Glen Burnie or in downtown Baltimore so it wouldn’t be that far from you. http://www.celiaccenter.org/
      When I made my appointment, they had a nurse/nutritionist call me back in about 24 hours. I told her all my issues, and begged to see a doctor there sooner (originally they were booking 5 months out). She got me an appointment the next week.
      A few other things you might consider…..make sure a doctor checks you for other deficiency’s, like calcium, magnesium, iron, vitamin B’s etc……..especially if you have a serious vit D deficiency.
      You might also consider the center in New York City: http://sklad.cumc.columbia.edu/celiacdiseasecenter/about-the-center/
      Because you sound like you have a lot going on, a Celiac Clinic might be a great place to start. They can point you in the right direction as to what specialists you might need to see, and what overall health advice and nutritional counseling you’ll get. Plus, they can work with your GI doctor to do things like get you another blood test to see if your body has stopped producing antibodies against gluten (and therefore you aren’t getting any gluten in your diet etc).
      I hope this is helpful!
      Cheers,
      Mag.

  49. I am now 61 and was diagnosed with CD in August 2012 by endoscopy, with the positive blood tests and biopsy results in September 2012. The reason for the scoping (both colonoscopy and endoscopy) was fecal occult blood. Looking back, I had abnormal liver enzyme levels, was anemic or borderline anemic, had extremely low HDLs, and vitamin D deficiency for several years. I had repeated blood tests for various things, but never for celiac! I have had fibromyalgia for my entire life (officially diagnosed in my 30′s); Rheumatoid arthritis showed up quite suddenly on one day in 2003, lactose intolerance in 2006, Raynaud’s in 2010, followed soon thereafter by splinter hemorrhages on all my finger nails, thyroid nodule ~ 2010, and numbness and tingling in my feet, which actually started in March 2012 with a scary, left-side only, toe-to-head numbness and tingling that sent me to the ER. There was no diagnosis then, even though they tested for MS (negative, thankfully). But, the numbness and tingling came back full time in February 2013. Tests showed it was not peripheral neuropathy, but still no diagnosis. After looking online, I am certain it is the result of CD. But, I am getting so discouraged. I have been GF since 9-19-12 and have not knowingly ingested gluten since then. The good news is that my blood work is now normal! The GI doc who diagnosed me told me to follow a strict GF diet and gave me a handout that could best be described as ancient (and useless). The RD I went to knew less than I did. I see a rheumatologist for the RA, have seen a neurologist for the numbness and tingling, the GI doc for the CD, but I think I need a doctor or other health practitioner who can see the whole picture. Does anyone have any suggestions as to what type of doctor or health practitioner I should look for? At this point, I am seriously considering the SCD diet or the gluten decontamination diet, but am not sure I could cope with the severity of either one. My husband has been a trooper through the GF diet, but I don’t know if he could cope with the other diets.

  50. I’m currently 5’11″ and 125 lbs, male..can’t sleep from pains and I look like a vampire. I am almost certain that I’m going to die soon. I look like Trevor Reznik from The Machinist. I’m severely anemic and every waking hour is painful and with great fatigue. I feel like I’m lucky to even get out of bed and quite frankly I have a hard time with employment since I look like a corpse or a Tim Burton character. Is there any hope? I’m on year 5 now of gluten free and stopped cheating completely about 2 years ago. I understand the repercussions of such cheating a celiac diet and the complications of immune disease and vitamin deficiency so I’m not looking for lectures either. I almost want a limitless credit card so I can just spend up and die in style. This is horrible.

    • Please get your morning coritsol tested – especially if you are pale/yellow and/or have scars that go brown instead of white.
      I suspect you may have Secondary Adrenal Insufficiency – that causes anemia, and weight loss and loss of energy (it also makes things like coeliac worse) Good Luck!!! and if the morning cortisol is low – make sure they do the HALF hour synacthen test (if it gets that far) DO NOT LET IT GO FOR LONGER – esp longer than an hour. Good Luck!!!!!

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