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Questions On Testing And Symptoms


Hamster101

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Hamster101 Rookie

Hey,

I've been on this site a while now, though I disappeared for a while when I got tangled up in life (University started, work ect) but over the last few months my health has begun to deteriorate to the point where I may as well be eating wheat and at least be suffering for something.

I want to get tested, and the Coeliacs confirmed so my Grandparent can stop trying to convince me I'm an attention seeker, but I'm worried about how long I have to eat gluten and wheat for the effects to become testable, and what kind of tests it would involve. Can someone offer me any guidelines on this, please?

I'm also worried about how to approach my doctor, as I know they are not all that happy with being told what is wrong with you. my doctor is a very nice man, but he seemed sceptical when I moved practices and added possible Coeliacs to my list of issues, as they failed to update it at my old surgery. should I approach him early and warn him I want the tests and go from there, or turn up incredibly sick and demand the tests? I'm not a particularly strong character, so I don't know how well that will work.

Finally, the symptom that has been getting worse over the last few months is a paint that starts about the height of my stomach (in my thoratic region, about the height of the last few ribs) with then moves rapidly, sometimes within minutes, down my abdomen until I need to run to the bathroom. if I dont go while it hurts really bad, I cant go for another hour, and remain in pain and uncomfortable for that time too. I alsocant take any kind of pressure on my thorax, as that develops from a mild discomfort to a sharp pain in about ten seconds.

Does anyone have any idea,s or suggestions?


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Kim69 Apprentice

Hi. I guess if I were you I would go to my dr and describe the symptoms. I don't know what your symptoms are apart from the pain but presumably they are gi related. Hopefully your dr will suggest coeliac as an option. Otherwise ask your dr for the full Coeliac blood tests. Or have an endoscope and biopsy. I think you will have to eat gluten such as bread for about a week.

Best of luck!

mushroom Proficient

I am sorry to say that if you have been gluten free for any length of time, and it sounds as if you have, then you must eat gluten at the equivalent of three to four slices of bread a day for a period of two months to have any chance of the tests being positive. In the absence of gluten the antibodies to it leave the bloodstream, and the damage to the intestine starts to heal so that the biopsy will probably not detect it in any shorter period of time.

When you eliminated gluten did you also eliminate lactose? If not, that could be a possible cause of your symptoms in the absence of gluten, since the enzymes we need for lactose digestion are located in the part of the small intestine that is damaged by gluten and it takes a while for the villi to grow back and start producing again. Also, have you been strict with your diet or has there been some cross-contamination creeping in?

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      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
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      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. 
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