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acidum

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acidum Newbie

Hello,

i would like to make this as simple as possible so i will try to make chapters short:

I have been struggling with many symptoms since the begining of my existence. When i was a child most of them were:

- stomach pain (down-left side), very painful always end with diarrhea

- unknown migrains

- social anxiety / avpd

- allergic reactions to unknown cause (5cm bump/tumors on skin hand/legs mostly, very painful typically lasted for 7 days)

As time went by (i've turned 15) allergic reaction symptom disappeard or was exchanged for chronic bronchitis and runny nose also of unknown cause - mostly treated with antibiotic but they haven't worked for long term. Anyway i had myself tested for allergens. It turned out im allergic to grass, dust, dogs, smoke etc. After taking some medications for it the bronchitis/runny nose kinda disappeard. However i still had stomach pains and migrains.

About two years after that i started to develop acne resistant every possible drug. Acne was located only on the face. I had tested the pus in private laboratory it turned out there is no harmful bacteria there (tested in 3 different labs, 3 different years). I decided to took accutane course and back in the days i didnt know how foolish i was. Accutane haven't helped instead it made things worse, red face, hairloss bla bla and acne (even worse) was still there (painful and itchy at the same time).

Next year i had a gastroscopy but without biopsy. Well it turned out that i have stomach ulcers. Hurray for me!

I took zoloft, prozac and some other things - no effect really.

Anyway i was feeling more and more down. Always tired, depressed and with brain fog. I have decided to make a biopsy of the gut (since my poo was yellow), actually doctor said there is no need but i insisted. It turned out i have malabsorption syndrome, II stage in Marsh scale - cause unknown. So through reading on the internet i found it could be a celiac. So i have tested myself for antibodies in blood (i did it 3 times in 2 years) however they were all negative. Doctor said it is not celiac and since it is not and he has no clues whats the problem i should not visit him again. <--- urm

Oddly my blood results are and were normal (at least the one i've checked for), the only strange thing was B12 level (which was a bit low) but MVP was normal.

Well i though i will try gluten free diet. I'm on it for a month but i don't really see any difference. I still have stomach problems (same type as i was a child), migrains, i'm always tired and i feel like i'm 100 years old (but well i should be just 25).

Anyway any recommendations what to do next? Any ideas when the diet should work? Or this does not really sound like celiac?

thanks for any response and sorry for the bad language :(


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mommida Enthusiast

Everyone has a different rate for healing. It could take up to a year to see real improvement on a gluten free diet.

You should be taking some sublingual vitamin B12 supplements. The doctor should have given you the shot when you were given the results that said you were low. :rolleyes: I think you need to be seen by a GI specialist to find out why you are having malnourishment issues. Keep a food journal to rule out hidden gluten, other food intolerances ( a lot of people complain of runny nose and are relieved once the are casein free) ;)

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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