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Diagnosed With Gluten Intolerance (Non-Celiac)

krishna

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krishna Apprentice
krishna
Posted
  • Author

I am not sure, I have been all over the Internet and consulted a fellowship trainee(md with 6 years of additional training) to answer that question for myself. She said they don't even test for gliadin ab to detect celiacs because it was not sensitive enough, meaning that asymptomatic healthy subjects also had these ab. But..... The key is to check for damage to the small bowel, which would give you a diagnoses of celiac, even if you didn't have the elev anti tissue ab......so.....the way I understand it is if you have malabsorption( meaning you are pooping out more fat than you should...which leads to vit A,D,E And K deficiencies and possibly if you are lactose intolerant from damage to the superficial villi,and/ or you have loss of water soluble vitamins and minerals(vitamin B 12 being the most easily measured and the most common)....then you most likely Have Celiac. I've read some articles saying that they are two separate entities and spoken to several GI docs who say they are one and the same. But, I do not agree with the latter. I believe that NCGI can lead to Celiac, and that you should be careful to eliminate gluten. Again, the issue being how much of an inflammatory reaction your body mounts, everyone is different. Some have so much of a reaction and keep eating gluten that eventually something turns on and activates the gene that expresses the anti self (tTg ab).

The main issue is that yes you need to eliminate ALL gluten, because you don't want that DQ 2 gene to "turn on" and start expressing ab that attack your tissues.

Does that make sense? There is ongoing research in this area and it is poorly understood, even by trained GI docs.

I hope this explanation helps. BTW, what fecal test did he do?

Also, many celiacs seem to have several food intolerances- something I did not believe at first until I got tested and found out I was also making IgA against milk proteins. And I also can't drink too much wine as I prob am sensitive to the sulfites which gives me the crampy D the next morning.

- Anita

Everyone is different, I think you're looking at text book symptoms... the panic/anxiety can take months to go away. I still have anxiety but it is not as sever as it was 2 months back.. Anxiety could be caused by thyroid functioning which gets effected by gluten or it maybe caused by food going directly into your blood stream, yeast overgrowth etc..

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Gfresh404 Enthusiast
Gfresh404
Posted

I'm confused - so a gluten intolerance causes "inflammation" and celiac causes the villi to get worn down? Does gluten intolerance eventually lead to celiac for everyone, or can it stay at the inflammation level not the vill-worn-down level? It seems like a constant state of inflammation is pretty bad too. I don't think my doctor thinks gluten intolerance is that dire - she just said don't eat gluten if it makes me feel bad. :blink:

It is my understanding the inflammation precedes villus damage. Everyone is different, but in general I think gluten sensitivity going unchecked will lead to Celiac Disease, among other things.

Again, while it has already been pointed out that technically, gluten sensitivity and celiac disease are different disorders, the severity and seriousness of the two are the same. In some cases, gluten sensitivity can be more severe.

crampy girl Apprentice
crampy girl
Posted

You can have B12 low even with non celiac gluten intolerance... I've checked all these with my doctor.. I trust him given his track record and publications (books/papers) on this topic..

Yes, you are correct. You can have low B12 from other causes( pernicious anemia) non celiac related. You are lucky to have found a doc who is knowledgable and can give you good advice. What is his name, so I can read his publications? The problem with most doctors is that they are trained to go by only "Evidence Based" practice, meaning if it is not scientifically proven or there isn't a randomized control study (the best type of research)- then it does not exist. Very frustrating for people like me.especially since that is how I was trained, but have this crazy IBS/ anxiety thing that goes away with gluten elimination.

ravenwoodglass Mentor
ravenwoodglass
Posted

Yes, you are correct. You can have low B12 from other causes( pernicious anemia) non celiac related. You are lucky to have found a doc who is knowledgable and can give you good advice. What is his name, so I can read his publications? The problem with most doctors is that they are trained to go by only "Evidence Based" practice, meaning if it is not scientifically proven or there isn't a randomized control study (the best type of research)- then it does not exist. Very frustrating for people like me.especially since that is how I was trained, but have this crazy IBS/ anxiety thing that goes away with gluten elimination.

Post number 13 has a link to his practice and a link so you can purchase his book.

crampy girl Apprentice
crampy girl
Posted

Post number 13 has a link to his practice and a link so you can purchase his book.

Thanks ravenwood! I just realized that after I posted. Wow, very helpful info.

hazelbrown10 Rookie
hazelbrown10
Posted

I would definitely like to check out the book. This just make me wonder all over again how many people might have gluten problems and never guess. My boyfriend went gluten-free a few months ago but he never had any symptoms as far as he can tell - some of his family members were gluten free and convinced him to try. He has eaten a small amount of gluten a few times since then and felt really bad afterwards... all this with not even feeling bad before! Wow.

krishna Apprentice
krishna
Posted
  • Author

Yes, you are correct. You can have low B12 from other causes( pernicious anemia) non celiac related. You are lucky to have found a doc who is knowledgable and can give you good advice. What is his name, so I can read his publications? The problem with most doctors is that they are trained to go by only "Evidence Based" practice, meaning if it is not scientifically proven or there isn't a randomized control study (the best type of research)- then it does not exist. Very frustrating for people like me.especially since that is how I was trained, but have this crazy IBS/ anxiety thing that goes away with gluten elimination.

Yeah I feel the same, I feel lucky to have found him. I have confidence in his diagnosis and he was able to give me a really good explanation of my symptoms.

His website (Dr Alex Shikhman, MD, PhD):

Open Original Shared Link

He has a good book on gluten intolerance, checkout Amazon for ratings:

Open Original Shared Link

Open Original Shared Link

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cassP Contributor
cassP
Posted

Yeah I feel the same, I feel lucky to have found him. I have confidence in his diagnosis and he was able to give me a really good explanation of my symptoms.

His website (Dr Alex Shikhman, MD, PhD):

Open Original Shared Link

He has a good book on gluten intolerance, checkout Amazon for ratings:

Open Original Shared Link

Open Original Shared Link

"The Grain of Pain".... aint that the truth :lol:

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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