Do I Say I'm Gluten Intolerant Or Celiac?

[Terbie]

I've been on the gluten-free diet for almost a year now after visiting my doctor. He did the blood test for celiac, which came back 'negative'. I don't have the specific numbers from the blood work. He told me to do a food diary and when I brought that to him, he said that I was "gluten intolerant" and to go gluten free.

I had several symptoms beforehand (stomach cramps, constipation, brain fog, extreme fatigue, depression, lost 10 lbs in a week, etc).

Now, that it's a while later and I'm much more educated about gluten intolerance and celiacs, I'm not sure which I really have. I know that you can have false negatives on the blood test. I've definitely been strict about my gluten free diet because I feel SO much better and my symptoms are basically gone now (except with accidental glutenings).

So what should I assume that I have: gluten intolerance or celiacs? I don't really know what to tell people. I just say that I'm 'gluten intolerant' but I'm starting to really wonder if I have celiacs. Several family members have also gone on a gluten free diet and their ailments are gone, as well.

I still get conflicting information on the difference between the the two. I still can't figure out what specifically happens in your body if you are gluten intolerant and eat gluten. My understanding is that gluten intolerance means your body can't digest gluten (not sure how though) and celiacs produces antibodies in your intestines which damage the villi.

Can anyone shed some light on this? I looked at past posts, but I'm still confused.

[elonwy]

I think you can say whatever makes you comfortable. The medical community doesn't quite have their heads on straight about it, so why should we? Some aver that its based on whether or not you have the gene, or the way you are diagnosed, and some don't differentiate at all, and say they are the same thing we just don't have diagnosis down yet. (Some is referring to the medical community at large, not just in the US). I tend to agree with the latter opinion. I use them interchangeably depending on my audience. I do however, have a specific diagnosis of Celiac Disease.

[Jestgar]

I say "I can't eat gluten. It makes me very, very sick." The actual label is for your convenience, not their understanding. Pick whichever one you want.

[Lisa]

This may be of interest to you:

Open Original Shared Link

[Jestgar]

Lisa, I couldn't get that link to work.

[darlindeb25]

The link wouldn't open for me either, but I think I found it: <a href="Open Original Shared Link disease.htm" target="external ugc nofollow">Open Original Shared Link disease.htm</a>

I agree with elonwy. I truly do not think doctors and researchers know enough yet about this disease to say which is which. I believe gluten intolerance is the beginning stages of celiac disease. Once your villi are flattened, you are in full blown celiac disease. Gluten intolerance may be similiar to pre-diabetes is to a type 2 daibetic.

The article says this about gluten intolerance:

  Quote

People can also experience

[munchkinette]

Honestly, I tell people in restaurants that I'm allergic to wheat and gluten, because they understand that the most. It's not the same thing, but "allergic" sets off the correct flags for them about checking with the chef. (I am allergic to wheat as well.)

I normally tell people I'm gluten intolerant. Sometimes I'll say celiac if they aren't sure what that means, just to keep it easy, but I'm not diagnosed as a celiac. it really just depends. Many of my friends are biologists and know exactly which things I have and don't have, but in general I keep it simple for people.

[tmb]

Hi Deb, thanks for an excellent synopsis of GI vs celiac disease. I am new to this forum, so excuse me if I have missed this point elsewhere.

Given the difference between the two, how do you confirm which it is you have, if either way you react to gluten? I understand that in order to be celiac disease you must either test positive for the antibodies or show flattened villi in the intestine. With GI are there any definitive tests or symptoms that can be considered positive?

Others have asked if GI progresses to celiac disease.

I tested negative to antibodies 5 years ago with minor symptoms, and did not have the biopsy. Symptoms got worse so I am now 2 weeks into gluten free with some symptoms improving (after 9 months of taking various foods in and out, including gluten). I do not want to have the biopsy, and do not want to go back onto a full gluten diet as it seems I am now more sensitive.

I have also removed yeast from diet for the past 9 monthsas I appear to also have candida. I gave up dairy 5 years ago.

[Terbie]

  tmb said:

I do not want to have the biopsy, and do not want to go back onto a full gluten diet as it seems I am now more sensitive.

I do know that it doesn't matter whether or not you are allergic, intolerant, or celiac you have to go on a gluten free diet. Honestly, I wish I had known more (or that my doctor had) and I would have gotten a biopsy, just to see the results. Now that I've been on a gluten free diet for so long, the test won't be accurate anymore. I've afraid that you'll have to stick to a gluten free diet, especially because so little seems to really be known about them.

It all seems so complicated and there don't seem to be that many answers. Sigh. But, at least the gluten free products have gotten better in a very short amount of time and more people seem to know what gluten is!

[tmb]

  Terbie said:

I do know that it doesn't matter whether or not you are allergic, intolerant, or celiac you have to go on a gluten free diet. Honestly, I wish I had known more (or that my doctor had) and I would have gotten a biopsy, just to see the results. Now that I've been on a gluten free diet for so long, the test won't be accurate anymore. I've afraid that you'll have to stick to a gluten free diet, especially because so little seems to really be known about them.

It all seems so complicated and there don't seem to be that many answers. Sigh. But, at least the gluten free products have gotten better in a very short amount of time and more people seem to know what gluten is!

If I had known 20 years ago what I know today..... I first had issues with house dust mite and by the time I knew what it was, and began avoidance, I had been chronically ill for years. It appears to be the same with candida and gluten. Yet would I really have taken it on board without the serious health issues? Probably not.

I see this as the first day of the rest of my life. While there is a chance my health will continue downhill, there is a better chance that by eliminating candida, gluten (and whatever else), I should improve my quality of life, and might return to my former glorious self.

On a serious note though, I see that many people consider gluten free to include separate utensils, toasters etc, something I have not yet done. Is there a chance that I will tolerate without issues, trace amounts of gluten around me? Or now that I have given up the 99%, I will probably become so sensitive that the trace amounts will become an issue?

[NancyEllen]

I use the term gluten-intolerant because a biopsy and blood tests have not shown Celiac. However, I was already off gluten grains and other products for 6 months at the time. IF I had been diagnosed as having Celiac Disease, I think I would still say gluten-intolerant as people react more strongly to someone having a disease. They undertand food problems more readily. I also have to explain what gluten is though.

I had always thought of the difference between Celiac and gluten-intolerance as Celiac being genetic lack of enzyme to digest gluten and gluten-intolerance being from acumulative stresses and digestive malfunctions acquired over a period of time. For me the precipitator was anti-biotics that damaged my gut.

NancEllen

[darlindeb25]

  Quote

Given the difference between the two, how do you confirm which it is you have, if either way you react to gluten? I understand that in order to be celiac disease you must either test positive for the antibodies or show flattened villi in the intestine. With GI are there any definitive tests or symptoms that can be considered positive?

Others have asked if GI progresses to celiac disease.

Sorry I didn't read this before TMB. After 8 yrs of being gluten free, and having so many intolerance's rear their ugly heads, I know I am celiac without a doctor saying so. Even my PCP told me he is 99% sure I have celiac disease, and he didn't know me 8 yrs ago!!! I didn't have the money to be tested 8 yrs ago, and now, I can't be tested without eating gluten and getting terribly sick for a long time...it's just not worth it to me!! My neuro did a celiac panel with gene testing a few weeks ago. It came back with me having a double set of DQ1 genes. Some doctors believe DQ1 can be celiac too, some don't. There are a some people diagnosed with celiac who do not have any celiac genes. Some doc's will diagnose celiac with just flattened villi, some must see flattened villi and have a positive blood test. I honestly do not think they have all the answers yet.

If you don't get answers from your doctors, and you feel better gluten free, then you should be gluten free.

[tmb]

  darlindeb25 said:

Sorry I didn't read this before TMB. After 8 yrs of being gluten free, and having so many intolerance's rear their ugly heads, I know I am celiac without a doctor saying so. Even my PCP told me he is 99% sure I have celiac disease, and he didn't know me 8 yrs ago!!! I didn't have the money to be tested 8 yrs ago, and now, I can't be tested without eating gluten and getting terribly sick for a long time...it's just not worth it to me!! My neuro did a celiac panel with gene testing a few weeks ago. It came back with me having a double set of DQ1 genes. Some doctors believe DQ1 can be celiac too, some don't. There are a some people diagnosed with celiac who do not have any celiac genes. Some doc's will diagnose celiac with just flattened villi, some must see flattened villi and have a positive blood test. I honestly do not think they have all the answers yet.

If you don't get answers from your doctors, and you feel better gluten free, then you should be gluten free.

Hi Deb, thanks for your response. I hvae been away and missed your response as I am still learning my way around this forum. I see that diagnosis for Dermatitis H is also seen as an affirmative for celiac disease and/or GI. Although it can indicate something else, in conjunction with other symptoms (GI etc) it is considered to be definitive.

As you say, I guess it makes sense to practice whatever is required to improve our health. I asked the original question because it appears that celiac disease carries a bunch of sinister long term outlooks for gut cancers etc while GI does not.

[tmb]

  darlindeb25 said:

Sorry I didn't read this before TMB. After 8 yrs of being gluten free, and having so many intolerance's rear their ugly heads, I know I am celiac without a doctor saying so. Even my PCP told me he is 99% sure I have celiac disease, and he didn't know me 8 yrs ago!!! I didn't have the money to be tested 8 yrs ago, and now, I can't be tested without eating gluten and getting terribly sick for a long time...it's just not worth it to me!! My neuro did a celiac panel with gene testing a few weeks ago. It came back with me having a double set of DQ1 genes. Some doctors believe DQ1 can be celiac too, some don't. There are a some people diagnosed with celiac who do not have any celiac genes. Some doc's will diagnose celiac with just flattened villi, some must see flattened villi and have a positive blood test. I honestly do not think they have all the answers yet.

If you don't get answers from your doctors, and you feel better gluten free, then you should be gluten free.

Hi Deb, thanks for your response. I hvae been away and missed your response as I am still learning my way around this forum. I see that diagnosis for Dermatitis H is also seen as an affirmative for celiac disease and/or GI. Although it can indicate something else, in conjunction with other symptoms (GI etc) it is considered to be definitive.

As you say, I guess it makes sense to practice whatever is required to improve our health. I asked the original question because it appears that celiac disease carries a bunch of sinister long term outlooks for gut cancers etc while GI does not.

[mjhere69]

  tmb said:

Hi Deb, thanks for an excellent synopsis of GI vs celiac disease. I am new to this forum, so excuse me if I have missed this point elsewhere.

Given the difference between the two, how do you confirm which it is you have, if either way you react to gluten? I understand that in order to be celiac disease you must either test positive for the antibodies or show flattened villi in the intestine. With GI are there any definitive tests or symptoms that can be considered positive?

Others have asked if GI progresses to celiac disease.

I tested negative to antibodies 5 years ago with minor symptoms, and did not have the biopsy. Symptoms got worse so I am now 2 weeks into gluten free with some symptoms improving (after 9 months of taking various foods in and out, including gluten). I do not want to have the biopsy, and do not want to go back onto a full gluten diet as it seems I am now more sensitive.

I have also removed yeast from diet for the past 9 monthsas I appear to also have candida. I gave up dairy 5 years ago.

[samcarter]

Well, my EmA test came back negative (but the clueless doctor didn't run any of the other celiac tests; in retrospect I'm mad at myself for not insisting for the whole panel). After going off gluten I felt so much better. Then i had some lapses and feel horrible again. Right now I don't have the time or money to hunt down a doctor who will do all the tests, which still might come back negative, while I keep eating gluten and feel like crap. At some point, when money isn't an issue, I will order Enterolabs and the gene and stool tests.

My husband, bless his heart, does not think I am a hypochondriac OR a drama queen. He is perfectly comfortable with no "official diagnosis", and believes that wheat makes me feel sick, so therefore I am allergic to wheat, and he suggested I just say that.

"I can't eat that, I'm allergic to wheat," or "I can't eat wheat, it makes me sick." Both are readily understandable by the general population, and don't require a long explanation of celiac. If one has an official diagnosis of celiac, then I'd recommend saying "I have celiac disease. Anything with gluten in it will make me sick." Because we do need to get awareness of celiac out there.

[veggienft]

Medical science states what it knows, and not what it does not know. Medical science has identified antibodies created by people with specific DQ gene patterns which yield the intestinal atrophy characteristic of intestinal celiac disease. Most Doctors recognize these genetics and no others as "celiac" disease.

Are there other gene patterns which yield autoimmune disease from gluten ingestion? Absolutely. Medical science has identified far more people with related gene patterns who get non-intestinal autoimmune disease from wheat ingestion. Medical science has identified specific mechanism which allow those gene patterns to produce non-intestinal celiac disease.

They revolve around fungal infections which mimic gluten combined with the zonulin enzyme reaction to gluten. Both mechanisms facilitate non-intestinal autoimmune reactions to gluten ingestion.

Read through the articles and watch the videos I provided in this thread:

Open Original Shared Link

The scientific question before us is what to call "celiac disease", the range of autoimmune attacks caused by the ingestion of gluten, or a specific autoimmune attack against the intestines caused by the ingestion of gluten.

The two syndromes are not mutually exclusive. A large portion of people with intestinal celiac also develop non-intestinal autoimmune disease. And a large portion of people with non-intestinal celiac develop intestinal celiac disease.

The range of gluten-caused non-intestinal autoimmune attack is sometimes referred to as "gluten intolerance". And that's just not correct. The resulting autoimmune diseases cause thousands of deaths every year. The term "intolerance" is a dismissal of the facts and of the people who suffer from them.

However, your question of what term to use to acquaintances as an excuse for choosing what food to eat is not a scientific question. It is a social question. I would prefer you told them you have celiac disease, because it gains recognition for our cause .......the cause of people not dismissing people with this life-threatening disease as "finicky eaters".

You may suffer being considered weird by some, so it's your choice.

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