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Post Diagnosis, Recovery & Treatment of Celiac Disease

Discussions related to the recovery process after you've been diagnosed.


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    • trents
      I do not think allergy testing requires you to have been consuming allergens in proximity to the testing. The testing itself supplies the allergens. There are two kinds of allergy testing that can be done. One is the skin prick panel and the other is serological. I've had both done. There is a lot of skepticism in the medical community with regard to allergy testing and for some good reasons. First, the same samples when sent to different labs will often yield significantly different results. Second, the results of the testing often not in accord with the person's real life experience of exposure. If you are considering getting tested for celiac disease, please realize that celiac disease is not a food allergy. It is an autoimmune disorder characterized by inflammation in the lining of the small bowel triggered by the consumption of gluten. There are specific serological antibody tests designed to detect celiac disease but they are only valid as long as you are consuming regular and significant amounts of gluten for weeks leading up to to the blood draw. I have concern about your mention of having low grade lymphoma because the incidence of small bowel lymphoma in the celiac population is 4x that of the general population. I am lining this article: https://www.beyondceliac.org/research-news/celiac-disease-and-lymphoma-researcher-explains-the-risk/  
    • Therockfrog
      7 years ago I had H Pylori and had a bad summer with my Hashimotos and found out I had low grade lymphoma.  Ever since that summer I have had issues with my feet and scalp tingling.  I thought it was related to my mild peripheral neuropathy but after a few years I realized it’s some kind of inflammation.    I then started thinking it was happening more often when eating certain foods.    Gluten and nuts.  The reaction is not too bad in my tummy, just within 30-60 minutes, my feet start tingling and my scalp sometimes tingles…so weird and annoying.   Also, in the Springtime, I’m super allergic to tree pollen and my feet and scalp tingle non stop for a full month.      So, I never really got tested for anything, just tried to avoid gluten and nuts.   And, if I did not eat those, the tingling would be minimal.    I did get an endoscopy 3 years ago because I was having stomach pain a lot and they found inflammation and redness but never told me anything other than take Pepcid for a month.  I did and it got better but till bothers me at times.   My lymphoma is still low grade.   Fast forward to last Fall.  I started having high cortisol issues and got tested for Cushings but that was mostly negative.   What happens is if I eat the wrong foods I get the tingling and then my cortisol goes up and it was up for a long time but once I fully committed to not eating bad stuff, my cortisol level went down.   Ok, so now 6 weeks ago, NOT pollen season.  I start itching and have more tingling in my feet and scalp but I’m not eating gluten or nuts.   The itching is worse that in Pollen season and now I have NO idea what is going on.   I tested myself for Milk allergy as It seems my feet would tingle 1-2 days after eating ice cream…so I stopped eating dairy also and tested the IGE for milk about 6  days after stopping it.   It showed up that I DID have a slight milk allergy.    Antihistamines dont seem to really stop the tingling.   So, now it’s been 3 weeks since I stopped dairy and I’m still itching and tingling….and now I have no idea what to do.   If I see that allergist and they do allergy testing, it will show negative since I’m not ingesting any of the bad stuff.   So, I kind of want to eat gluten, milk, nuts for a few days before I see the allergist just to make sure it’s in my system.  It will make my feet tingle worse and make it hard to sleep, etc but how else will I know 100% that I have these issues if I don’t do it this way.    Could it be a large amount of histamine and my body does just not like it?   So frustrated…sorry for the long post.
    • HWB
      not rubber at all. very hard to describe a taste but it's more like metallic mixed with an element of when you're breathing in something strong like ammonia or mint, but there's no mint or ammonia taste just that sort of strong chemical sensation. i'm reasonably sure that part of it actually is metals being broken down and also a soup of toxic bacteria and god knows what else. Maybe H pylori creates some sulfide or other chemical gas that's added into the mix. I did a consult with yet another expensive 'expert' doctor and it was yet another seeming waste of money. Advised to do ketogenic diet which is a non-starter for me. The pain is slowly going away, less and less frequent but I still expect more painful episodes and vomiting. Still expelling this plaque almost constantly even when eating gluten now - which i really shouldn't do. I have a few ideas to try soon. One goes back to many years ago when I was doing liver cleansing protocol, part of which involved epsom salt. I had liquid bile expelled during the period when i was using epsom. Unfortunately epsom is too laxative and I couldn't be tied down like that. Was thinking perhaps just sulfate alone might help with bile solubility and concentrace minerals has a good amount of sulfate, so who knows.    
    • MomofGF
      @trents @Scott Adams I want to thank you both very much for putting me at ease with your replies. I am making an apt with her doctor this week but all my worries of it being more have dissipated. This is all new to us and I think she originally had it from 2021. She lost 20 lbs because it felt like whatever she ate caused a crazy reaction. She was bloated, would have severe diarrhea and/or vomiting and it was a year of testing and nothing coming out of it. However celiac was never a thing that she was tested for. Also I just realized, my dad had a bathroom time when he would come home after night shift to poop. It was diarrhea every time and it never occurred to me that maybe it could be a reaction🤷‍♀️🤷‍♀️ I am going to ask my mom why that was a thing. He is dead now, so testing is not an option.  These answers really helped me out and I truly appreciate your help ❤️❤️
    • trents
      Welcome to the forum, @damnyoureyes! Your elevated serum B12 levels are because you supplemented with B12 and would not be due to malabsorption from celiac disease. Malabsorption from celiac disease would give the opposite effect. Were you ever tested for B12 serum levels before you started supplementing with B12? I understand you were trying to find a solution for the fatigue you were experiencing but there can be many causes for fatigue besides B12 deficiency.  Low vitamin D serum levels is a chronic problem in our modern world as most people live and work indoors. And, of course, if you live in a climate where there aren't many sunny days this is exacerbated. But certainly, low serum D levels is a classic symptom of celiac disease as well. There are specific antibody tests for celiac disease and I suggest if you suspect you have this condition you request testing from your physician. You would need to be eating at least 10g of gluten daily for several weeks before the blood draw. That's the amount of gluten found in approximately 4-6 slices of wheat bread. If you decide to pursue celiac antibody testing, make sure you request your physician includes the "total IGA" test order along with the "tTG-IGA". Total IGA testing checks for IGA deficiency. If you are IGA deficient it will skew other IGA tests down toward the negative range and can create false negatives.  
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