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Clarification Please
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13 posts in this topic

I know the difference between celiac and gluten intol. is that-

1- celiac has the villi wearing away- GS does not

2- celiac is autoimmune- GS is not.

Where I'm confused is:

Is GS genetic like celiac? or not? I am finding conflicting info on the internet, but I am not sure if it is because some websites are interchanging the two terms. Some sites say it is not. What are your thoughts?

Also is NCGS life long like celiac? I am coming across some places that say you might be able to introduce gluten again after a time. What has been your experience?

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There is not much research done yet on gluten intolerance. That's why you are finding conflicting info. Many things out there are based on opinions and personal experience instead of research. It is my opinion that celiac disease is just one form of gluten intolerance and in the future they may have other forms of gluten intolerance that they can test for with speciific tests. The tests for celiac are not currently 100% accurate, however. There are many false negatives so that people that have negative tests, but positive results with the diet, end up being labled as "just gluten intolerant". Because of the flawed testing, it's my opinion that gluten intolerance is every bit as serious as celiac disease and also requires a life long gluten-free diet. Until there is better testing and more research done we have no way of knowing if people with "gluten intolerance" are really celiacs that don't show up on testing or if they have a different condition altogether.

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Yes, gluten intolerance seems to run in families. I haven't seen any genetic studies because gluten intolerance is not a well enough defined clinical diagnosis to even choose people on whom to do genetics.

There is a "board think" here that celiac and gluten intolerance are always lifelong. This is not the case, even with celiac disease. If you read the medical literature, there are documented cases of biopsy confirmed celiacs who become able to consume a normal diet again with no ill effects or villous damage. It's most common where DH is the only symptom. I wouldn't encourage board members to go off and try eating gluten again, as regaining tolerance is not the norm, but it's something to be aware of.

Similarly, my doctor has said he has seen people who were gluten intolerant recover, and that the degree of ones gluten intolerance can change over time. I've read this in articles around the Internet as well, though I consider my Dr. a better resource. Really, just about any allergy or intolerance can come and go somewhat unpredictably. With intolerances it may be related to changes in intestinal microflora, and allergic desensitization is a well documented phenomenon.

I do agree with GlutenFreeManna, that it is very difficult to discriminate between non-celiac gluten intolerance and undiagnosed celiac disease. Further, there is fairly convincing evidence that gluten intolerance is the first step in developing celiac disease, which makes consuming gluten a risky proposition if you are gluten intolerant.

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I know the difference between celiac and gluten intol. is that-

1- celiac has the villi wearing away- GS does not

2- celiac is autoimmune- GS is not.

Where I'm confused is:

Is GS genetic like celiac? or not? I am finding conflicting info on the internet, but I am not sure if it is because some websites are interchanging the two terms. Some sites say it is not. What are your thoughts?

Also is NCGS life long like celiac? I am coming across some places that say you might be able to introduce gluten again after a time. What has been your experience?

Hi, I have read that there is Celiac Sprue [celiac Didease] & Celiac sensitivity [when all blood work positve but biopsy normal] & Gluten intolerance [allergy testing]. It has been said that a confirmed biospy diagnosis can only Rule celiac In, it cannot rule it out [ Clinically pertinent coeliac disease exists despite normal small-bowel mucosal villous architecture]. And all diagnosis and sensitivity and intolerance Need be addressed and patient needs eat gluten free for life before damage can be done through immune system, neurological damage or small intestine damage. They say autoimmune if shows in blood work or biospy. It`s a lot to learn and we all must seek our answers because doctors are not going to give the answers we need. Great that you brought up this topic, terri

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Yes, gluten intolerance seems to run in families. I haven't seen any genetic studies because gluten intolerance is not a well enough defined clinical diagnosis to even choose people on whom to do genetics.

There is a "board think" here that celiac and gluten intolerance are always lifelong. This is not the case, even with celiac disease. If you read the medical literature, there are documented cases of biopsy confirmed celiacs who become able to consume a normal diet again with no ill effects or villous damage. It's most common where DH is the only symptom. I wouldn't encourage board members to go off and try eating gluten again, as regaining tolerance is not the norm, but it's something to be aware of.

Similarly, my doctor has said he has seen people who were gluten intolerant recover, and that the degree of ones gluten intolerance can change over time. I've read this in articles around the Internet as well, though I consider my Dr. a better resource. Really, just about any allergy or intolerance can come and go somewhat unpredictably. With intolerances it may be related to changes in intestinal microflora, and allergic desensitization is a well documented phenomenon.

I do agree with GlutenFreeManna, that it is very difficult to discriminate between non-celiac gluten intolerance and undiagnosed celiac disease. Further, there is fairly convincing evidence that gluten intolerance is the first step in developing celiac disease, which makes consuming gluten a risky proposition if you are gluten intolerant.

Wow Skylark, thanks for sharing this info, these were thoughts I have tossed around in my head and concluded much the same that you confirmed and articulated so well for me and others. Terri

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At least they're finally recognizing gluten sensitivity. You might like to read this interview with Dr. Fasano at the University of Maryland School of Medicine's Center for Celiac Research.

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Nice article. I love when he says "The patients, as usual, were visionary, telling us this stuff existed but healthcare professionals were skeptical."

I don't agree 100% with Dr. Fasano that gluten sensitivity is not a precursor to celiac. There are studies linking IL-15 produced in gluten sensitivity to development of celiac disease. Dr. Markku M

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At least they're finally recognizing gluten sensitivity. You might like to read this interview with Dr. Fasano at the University of Maryland School of Medicine's Center for Celiac Research.

Yes , you are so right that they are or need to recognize `gluten-sensitivity` especially if had bloodwork show strong-high-positive.

The experts say the following "Clinically pertinent coeliac disease exists despite normal small-bowel mucosal villous architecture. Mucosal transglutaminase 2-specific IgA deposits can be utilized in detecting such patients with genetic gluten intolerance."

I always learn from you Sylvia, thanks, Terri

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So if one is positive on the blood work, but ends up negative on the biopsy, I should consider them gluten intolerant? To be on the safe side, should I have their siblings tested as well? It is better to assume there is a genetic component until studies prove differently.

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In the interview the Dr. said if you are GS you will feel better quickly, in days or weeks.

But if you are celiac it will take weeks, months, or years.

Do you find that to be true?

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So if one is positive on the blood work, but ends up negative on the biopsy, I should consider them gluten intolerant? To be on the safe side, should I have their siblings tested as well? It is better to assume there is a genetic component until studies prove differently.

No, a positive on celiac bloodwork indicates they are for sure celiac. Biopsies can miss the damage--the dr may not take enough biopsies, damage can be patchy (they are not able to see it during the endo only after they take a sample out and put it under a microscope), or dammage can be in one place and endoscopy does not reach the entire length of the intestines. The positive blood tests and something like 99% accurate. If they have all negative tests (bloodwork and biopsy), but still respond well to trying a gluten-free diet then they should be considered gluten intolerant or they may be celiac anyway since negative tests have about a 20% false negative rate.

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In the interview the Dr. said if you are GS you will feel better quickly, in days or weeks.

But if you are celiac it will take weeks, months, or years.

Do you find that to be true?

I would love to pick the dr's brain about this a little more and see what his context is for making this statement. Is he talking about only people who are diagnosed in older age or everyone? It seems like a very generalized statement to make and doesn't really make sense when you conside r the difference between people diagnosed early in life and people diagnosed later in life. Even amoung biopsy diagnosed celiacs there is a range of damage. And there is also a range of symptoms--some symptoms take longer to go away than others. DH can take months to go away after a flare up. Diarhea may go away in just a few days. Vitamin deficiencies can take months to years to recover from too. It's just going to vary from person to person I'm afraid. I think the dr is implying that gluten sensitive people don't have damage or vitamin deficiencies and therefore they should feel better faster but I know many gluten sensitive people on this board that test negatvie but have neuorogical symptoms and neuro damage that has taken years to recover from. My own experience has been a slow process of rebuilding my muscles, dexterity and memory, as well as treating vitamin deficiencies over the past 18 months. Bloating and gastro issues went away right away. Fatigue, joint pain, muscle pain, etc took longer. Since I didn't do any testing I wonder if the dr would call me celiac or if he would call me gluten intolerant? I think I will respectfully diagree with the dr until they have better tests for celiac disease and have some better definitions of "gluten sensitive".

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I also think that is interesting about the gluten sensitive people feeling better more quickly than celiacs. I don't know which one I am either. My worst symptom was anxiety but I didn't know that this was the cure. As far as my GI issues. I had horrible bloating, cramping, heartburn, constipation, and gas and the doctor suggested trying gluten free for a month. Those symptoms started to resolve within a week. The anxiety has been a surprise. A couple weeks in I could go to bed with no anxiety and I used to be so anxious I would keep myself awake out of fear I wouldn't wake up (crazy I know). I got sick as well which before would have me worried something was seriously wrong with me and I would have panicked but I didn't worry about it. I still get anxiety now, but I can sense it coming and talk myself through it much better now. I am hoping in time it goes completely away. So, with as long as I have been gluten free I will never be able to get tested and my anxiety was so bad I am not going to challenge for a test. So I guess stick with it even though I would love to know for sure if I am celiac or not.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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