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Please Help - Fistula - Gluten Sensitivity

SMS123

By SMS123
in Food Intolerance & Leaky Gut

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SMS123 Newbie
SMS123
Posted

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
cyclinglady
Posted

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
kareng
Posted

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
GFinDC
Posted

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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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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