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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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Contact them.
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