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Are Gluten Intolerance And Celiac Disease The Same?

Blenderly

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Blenderly Newbie
Blenderly
Posted

I am 33 years old and am gluten intolerant. I had been eating relatively gluten free for some time, and my blood test came back negative for celiac. I asked my doctor if my eating gluten free could have altered the results and she said yes. I requested a referral to a gastroenterologist because I have had chronic pain in my colon for 8 years. I've tried to get help for it, but because I don't have dramatic weight loss, the doctors don't believe it's anything but irritable bowel. I even had one doctor tell me I just had weak stomach muscles and needed to exercise more! :angry:

The specialist said that I definitely have a gluten intolerance and to stay away from gluten, but that I don't have celiac because of not having the weight loss. Does that make any sense? Is there a difference between gluten intolerance and celiac? I apologize for my ignorance, I've just been frustrated for a long time. When I do eat wheat I get bloated, cramps, diarrhea, sometimes a skin rash. It seems I'm allergic to almost everything under the sun. And I've been getting flu like symptoms that last for about 2 days at a time. When my doctor told me that it was irritable bowel and not celiac, I went back to eating wheat. The pain in my colon has become so intense that I can't sleep at night. When I cut out wheat it's not as bad, but the pain never goes away. Does anyone have any insight? I would really appreciate it! Thanks ;)

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024Mandy Newbie
024Mandy
Posted
I am 33 years old and am gluten intolerant. I had been eating relatively gluten free for some time, and my blood test came back negative for celiac. I asked my doctor if my eating gluten free could have altered the results and she said yes. I requested a referral to a gastroenterologist because I have had chronic pain in my colon for 8 years. I've tried to get help for it, but because I don't have dramatic weight loss, the doctors don't believe it's anything but irritable bowel. I even had one doctor tell me I just had weak stomach muscles and needed to exercise more! :angry:

The specialist said that I definitely have a gluten intolerance and to stay away from gluten, but that I don't have celiac because of not having the weight loss. Does that make any sense? Is there a difference between gluten intolerance and celiac? I apologize for my ignorance, I've just been frustrated for a long time. When I do eat wheat I get bloated, cramps, diarrhea, sometimes a skin rash. It seems I'm allergic to almost everything under the sun. And I've been getting flu like symptoms that last for about 2 days at a time. When my doctor told me that it was irritable bowel and not celiac, I went back to eating wheat. The pain in my colon has become so intense that I can't sleep at night. When I cut out wheat it's not as bad, but the pain never goes away. Does anyone have any insight? I would really appreciate it! Thanks ;)

Hello,

you can be gluten intolerant and not have celiac. If you have an intolerance to gluten it will not cause damage to your intestines, just create symptoms (IBS). Your blood work will not be accurate because antibodies to gluten are only produced if you have celiac and are currently eating gluten. If you stop eating gluten your body stops producing the antibodies. Everyone with celiac has different symptoms, not every one has weight loss. In order for you gastro to diagnose celiac you have to be eating gluten. the biopsies from your small bowl can only be positive if you are eating gluten(the villi will be flatened). Most gastros have a rule about how long you have to be consuming gluten before they perfore a endoscopy to test for celiac disease(around 3 months). Don't accept IBS for a diagnosis untill you have had an endoscopy and colonoscopy to rule out other issues. Many diseases' can cause those symptoms you describe including: candida overgrowth, microscopic colitis, Lactose intolerance, other intolerances and allergies.

Good Luck

curlyfries Contributor
curlyfries
Posted

The jury is still out on that question. Some posters here are sure they are the same.....others are sure they are not......and still others don't know or care....the diet is the same either way.

Celiac's can be underweight OR overweight, so that has no bearing.

You said when you cut out wheat, the pain is not so bad, but doesn't totally go away. Are you only eliminating wheat? What about other gluten ingredients?

I used to feel pain in my colon, too....but no more. I know that sugar was at least partially if not completely responsible for this. BTW.....I don't know if I have celiac or gluten intolerance......do not wish to eat gluten ever again, not even for a diagnosis.

And your symptoms won't completely go away if you continue to be relatively gluten free.

If you get a rash from eating wheat, you could have it biopsied (not ON the rash, but the surrounding area) If it is dematitis herpetiformis, then you definitely have celiac.

Blenderly Newbie
Blenderly
Posted
  • Author

Thanks for the info, gluten intolerance vs. celica, I really appreciate it. As for the grains, I've tried Spelt, Kamut, barley, rye, Oat flour etc...and they all give me the same symptoms. I am lactose intolerant and haven't had dairy in a very long time. I had to cut out Soy milk because it made me very sick as well. So...my diet is quite restrictive, gluten free, dairy free, soy free.....But, still have chronic pain. I am going for a colonoscopy in May, which I'm hoping will tell me something, at least I'll know where to go from there.

Thanks again and hope you are all doing well.....take care! :D

nora-n Rookie
nora-n
Posted

Only 5% of newly diagnosed celiacs are under-weight, and 40% are over-weight or obese. The doctor has got it wrong.

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    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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