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Please Help - Fistula - Gluten Sensitivity


SMS123

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SMS123 Newbie

Hi,

I have a rare condition I guess (as I do not know what is going on) and need your help. Please read my post.

6 months back I got abscess on lower back\upper buttocks. There was hard swelling around abscess area. It popped on multiple places on the swelling and started discharging blood and pus.

After 5 months on antibiotics, my doctor said it was fistula and did a fistula surgery. He scraped all the hard tissue, closed fistula tracks and placed a seton.

3 weeks after surgery, swelling came back. It popped on multiple places and started discharging. This time only blood.

I was getting buring sensation in anus after BM ( before and after surgery). After surgery, I went gluten free and the burning sensation stopped. I was surprisesed!

I am thinking that my strange swelling on buttocks is also some kind of food related allergy.

Please advise.

Thanks!


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cyclinglady Grand Master

Welcome! Sorry that I do not have any answers for you. The best thing would be to research celiac disease to determine if any of your symptoms apply. Here is a link to the University of Chicago's celiac center:

Open Original Shared Link

This is the actual list of tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

I wish you well.

kareng Grand Master

I think you should be hounding your doctor about this! From what i have heard, fistulas can be hard to heal. Unfortunately, 1 surgery and some antibiotics may not do it. Have you been evaluated for Chron's? I think fistulas are associated with it?

GFinDC Veteran

Hi,

 

Fistulas can happen sometimes in Crohns patients.  The fact that you had symptom reduction on a gluten-free diet is good to know.  Some people with Crohns go gluten-free and have improvements.  It is possible to have both celiac disease and Crohns at the same time.

 

There are some tests for food intolerances, but not many.  Sometimes the best test is what your body tells you by it's reactions.  A food elimination diet can help pinpoint foods that cause reactions.

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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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