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Gluten Intolerant, But Not A Celiac?
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16 posts in this topic

Is it possible for someone to have an "allergy" to gluten, but not have celiac disease?

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My GI says he thinks I have IBS, not celiac, but I am 100% certain that I cannot handle gluten. Just wondering if anyone else in same boat....

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Many people are misdiagnosed with IBS when it is really Celiac. Alot of doctors do not know what they should about celiac so I would not believe it for one second. Your body knows best. Did you have blood tests done?

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I don't have any malabsorption, nor do I have either of the two known Celiac genes but gluten makes me SICK!!! I had tests through EnteroLab and even was a high "normal" (9, <10 is normal) for antibodies, so even there it appeared I don't have a gluten problem. But I had been gluten free for a while and when I recently questioned this again, Dr. Fine (of EnteroLab) told me to not eat gluten. I wrote and asked him if my time off gluten would be the reason my antibody level was "normal" - though I had read that EnteroLab tests are very sensitive and should be able to detect this up to two years later - his response was:

Yes that might have made it 9 rather than 10 or 11 but really there is no

difference, we just have to have a cut off.  No antibodies really should be

the result if no reaction. Stay gluten free.

Thanks

Dr Fine

Of course Dr. Fine is more open-minded about recognizing gluten-intolerance in people so that might be the difference between him and your doctor, opinion-wise. I have noticed even in the past few weeks reactions that range from bad IBS to bad depression and joint pain. Depression and joint pain are neurological reactions and don't have much to do with the gut, so it doesn't matter if I am diagnosed Celiac or not - in this case my gut may not be affected in any way.

I think you should go with your gut - if it makes you feel better, then follow the diet. Didn't you post something about having a positive test, but your doc decided it wasn't indicative of Celiac? Or am I confusing you with someone else?

Thing is, it's your body, and you are the one in control of it. If it makes your IBS symptoms go away to eat gluten free, then that's the best thing you can do for yourself, doctors advice or not.

Take care and keep reading - support here is really good for helping you stick to your guns!

Stephanie

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Its my understanding that there is a difference between Celiac Disease and gluten sensitivity but they are treated the SAME, being on a gluten free diet for life!

My GI doc tried to say I had IBS too but I knew it was something more. If you know you have a reaction to gluten, cut it out of your diet, I'm sure your doctor would understand and even accept your improvement being gluten-free (mine did).

Feel better soon!

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My doctor (in the UK) called it gluten sensitivity because he forgot to send me for a biopsy and it's been decided a gluten challenge would be too bad for me (not recommended in the UK anyway).

Hence there may be a difference or there may not - in my case we shan't know but that doesn't stop us knowing what the continuing remedy is (though am feeling fairly queasy still after 2 and a half years).

Hoping this is of interest to PreOptMeqs.

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As far as I know, there is a difference between celiac disease and a gluten intolerance, though they are treated the same way, as somebody mentioned before. My doctor told me that (as I am still going through more testing) I may not have full-blown celiac disease, but definitely have at least a gluten intolerance.

-Peaches

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is celiac the result of gluten intolerance or the cause? does gluten intolerance cause celiac ? Which came first? The chicken or the egg????

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I have gluten intolerance, not Celiac. I do not have the gene, my biopsy was neg, and the villi were not damaged. My GI doc will not give me a definite diagnosis but my blood test, IGA was 75 but ttg was negative. I do have other food intolerances which include dairy, yeast, egg white and corn. Who can figure?? I know gluten makes me sick so I don't eat it. Hope this helps.

Many Celiacs develop gluten intolerance which causes damage to the intestines, but others develop Celiac without any symptoms. That's why there are so many symptoms, each case seems to be different.

You asked about an allergy to gluten, I've never heard of one but I know of people who have allergies to wheat which manifests itself as typical symptoms sneezing, hives, difficult breathing, etc. To get a true diagnostic tests an allergist would need to do a skin scratch test or an IGE blood test, which of course would come out positive.

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Another thing is people often think that Intolerant is less than Celiac - meaning not as problematic. But this does not appear to be true. Celiac, as in affecting the gut, is now being considered the "tip of the iceburg" when it comes to gluten intolerance, and that there are many other problems coming of gluten intolerance; such a neurological conditions including peripheral neurapathy, gluten ataxia, psychological problems, etc (not an exhaustive list); plus all the other autoimmune disorders that are being linked to gluten intolerance.

For myself, I seem to have some of both sets of symptoms - some stomach/IBS problems and also neurological symptoms including migraine, mood disorder, lack of coordination, thinking issues, and occasional neurapathy.

Those who present neurological symptoms usually don't test positive by biopsy, as, not surprisingly, their small intestine isn't the organ being targeted by their body's immune system.

What this means is anyone who thinks they are "just" gluten intolerant and not take it seriously may not be aware of other complications that can happen as a result.

Anyway, just wanted to bring this up.

Stephanie

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my doctor questioned gluten sensivity with me as well. I have one gene, negative Tissue Transglutaminase, positive IgA (very high- 140), negative IgG. No damage on biospy. No symptoms and currently going thru a gluten challenge (1 year with no symptoms) except occasional burning feeling in my stomach. Tested positive for a wheat and corn allergy.

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A celiac is gluten sensitive, but not all gluten sensitive people are celiac. They could present in many other ways.

One can be allergic to gluten, say wheat. This is an IgE immune response, like the peanut allergy, seafood allergy, etc.

Our problems are predominately IgA (mucosal tissue immune system) and IgG.

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I, also, was told I just had gluten sensitivity, not Celiac Disease. I've been off gluten for 2 years and just recently, to test myself, started adding it back in. Well, that didn't work. Started getting all the old symptoms back. So, I am totally gluten free for life!

I think that with either diagnosis, one should eat gluten free.

PS Stephanie, I LOVE your avatar!

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You can be gluten sensitive and not have the full damage in the intestinal tract to qualify for the GI doc to say you have celiac. One of my docs said that the big difference is whether the damage is bad enough to show up in the GI tract or whether you are just waiting for it to happen.

You can also have a true allergy to the grains containing gluten. That can occur with or without celiac disease.

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Thanks, Julie! It's a picture from a card my husband gave me for my birthday a couple of years ago and it always makes me want to laugh.

I used to have a cat who would ride around on my shoulders as a kitten, and when he finally grew to 16 pounds he would *still* do that. Was a funny sight!

Stephanie

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my gi doctor also said i had ibs and was probably gluten intolerant because my biopsy and bloodtest were negative; however, i have two endos who believe i am celiac because of my symptoms, which range from the typical gut reaction to neurological and beyond (my grandfather also suffers from "gluten intolerance" and a close-minded doctor). my one endo said the biopsy should be taken from the colon instead of the intestine and the other endo said that labs can easily mess up the results...so who knows?!

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