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Intussuseption Of Small Bowel


Sis

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Sis Rookie

just recently diagnosed with celiac disease. Also suffering from bouts of intussueption of small bowel that my dr. says is seconday to the celiac disease. In pain all of the time seems like and with no help in sight. Does anyone else out there suffer from this who can offer some words of advice?

PS. New to this message board stuff

Sis


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StrongerToday Enthusiast

Welcome - glad you're here! You'll learn a lot from this great group, be prepared to spend lots of time at the computer reading up on posts.

Sorry to hear you're in pain, and I'm afraid I don't know anything about it... but I'm glad you joined the group.

trents Grand Master

What is "intussueption"?

Sis Rookie

It's when the intestine actually telescopes into itself. My Dr. says that it is pretty rare in adults but that there was so much damage to my small intestine from the Celiac Disease that it has caused the intussuception. I've done some research on it and most of what I've read say that usually the most common treatment is small bowel resectioning. I am going back to my GI Dr. Thursday.

Sis

jerseyangel Proficient

Sis--That sounds terrible. Good luck with everything :)

trents Grand Master
It's when the intestine actually telescopes into itself. My Dr. says that it is pretty rare in adults but that there was so much damage to my small intestine from the Celiac Disease that it has caused the intussuception. I've done some research on it and most of what I've read say that usually the most common treatment is small bowel resectioning. I am going back to my GI Dr. Thursday.

Sis

I think you should consider giving your body a chance to heal from a gluten-free diet before you have someone taking out sections of your bowel. Experts say it can take up to two years for the small intestine to completely heal after going gluten-free. With removal of part of your small intestine you are introducing an automatic nutrient absorption handicap. Plus with bowel surgeries adhesions often come back to bite you down the road, requiring more surgeries. Of course, this is all easy for me to say. I'm not living with your pain.

let-the -sun-in Newbie

hi sis

i too have the same problem and it was picked up twice on a ct scan but since i went gluten free i just had another ct scan done and it was clear so i would give the gluten free a chance before you try surgury ,


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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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