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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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    • trents
      Virus, celiac disease or both?

      By trents · Posted

      First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten Sensitivity).  Second, though I think your question other question has already been answered. Since the tTG-IGA antibody test is only 90 to 98% specific, elevated values for this test will be have non-celiac disease causes in 2 to 8 out of 100 cases. I realize that is addressing your question in a general way but the non-celiac causes have also be covered in this thread, though not to  the granularity of giving percentages to each non-celiac cause. Not sure why that is important to you at this point. First, you need to separate whether it is due to celiac disease or not. If not, then start sorting out what the other cause is. But as I stated above, by far the most likely cause is celiac disease so that is the place to start. Sure, we get it. Having  to eliminate gluten from your life spells huge culinary and social changes and challenges. But it's still better than facing cancer or host of other diseases that less definitive antidotes and outcomes. With celiac disease you don't even have to worry about taking medications because, as of now at least, there are none. The treatment is very straightforward. Avoid gluten.
    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      @trents This info is so helpful and I’m absorbing it all. My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vitamins and minerals compromised. None of it. To me it was just an allergy to gluten.  My close family and friends think I’m crazy for even giving it a second thought because “no symptoms, no worries.”  It’s unfortunately hard for me to let something go that I don’t know enough about. Therefore all the research came into play.  I’m glad I’ve joined this forum. It’s more helpful to talk things through with people than looking through cases studies without being able to ask questions. I’m on the fence right now on what my odds are. I don’t know enough about the other variables and probability of why a TTG level would be raised.  The questions I still have lingering are:  -what are the odds that these levels are raised in something other than celiac? For instance of all positive TTG tests that have been done how many of those are from celiac? I know it’s a big ask but to me that’s something that is super unclear to me.  - what are the TTG levels in something other than celiac? (I.e. in things like type 1 diabetes, rheumatoid arthritis, hepatitis, viruses, NCGS, etc, are the TTG levels the same as those that have celiac, higher or lower?)  - even if it’s not celiac and it’s NCGS, if my body is “responding” to gluten, and creating antibodies to it, wouldn’t that be something to avoid anyway? Maybe not doing the damage but still my body doesn’t like it?  -could I really possibly follow a gluten free life as close as I follow Jesus?  Definitely understand now that key piece of needing an EGD. It’s looking at things from another angle. Also with all the other associated blood work, more angles.  I would like to say please forgive me if any of my questions seem as though I’m trying to be difficult. Making lifelong decisions is hard.  I do have decisions to make as you have said. I clearly will need convinced in order for this to be something to be committed to.  I would hope that there will be something in the future that comes out that will offset gluten in bodies the same was it does for sugar in diabetics.  My compassion is far greater for anyone carrying the burden of celiac than it was a month ago knowing what I know now.  I appreciate you helping me work this out, in real time. It’s been lonely up to this point. Only me talking about what I’ve read to people who don’t think I should be bothering with it any further. 😆 So thank you! 🙏            
    • trents
      Probably celiac but also confused

      By trents · Posted

      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      Probably celiac but also confused

      By trents · Posted

      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
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