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Dr Won't Test Me For Celiac Because I Don't Have "classic" Symptoms


TorontoGal

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TorontoGal Newbie

Thank you all for the info regarding the tests! I just took the Biocard test last night and it was negative. I wanted to wait longer so I could eat more gluten but I just feel so horrible! Yesterday I just stayed in bed all day because my stomach hurt badly and the thought of wearing anything other than loose PJs sounded awful. I'm going to try and be referred to a GI doctor and maybe get those other tests, because there is no way this is normal lol

I did get tested for certain vitamins about a month ago, and those results just came back showing my iron is high?? I know that isn't causing my problems because I've had them for a decade and my iron was never high before. I don't know...

I hope everyone had a good weekend! :)


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SiandAshs Mom Apprentice

I'm sorry you're having such a tough time getting a doctor to help you. Is it a possibility to go to a walk in clinic and ask a random Dr. there if they'll test you?

I am in Alberta - thankfully the ttg iga test is covered by Alberta Health and my doc was willing to send me for it. Unfortunately if that one test comes back negative (as mine was) then you're screwed because that's the only celiac test the labs run (unless your ttg iga is high - then they'll also run the ema iga as well). We have no antigliadin iga or igg, no ttg igg, no dgp tests - nothin'. If you're willing to drive over the border and pay for tests out of pocket, you may have more luck having the tests run in the states. They seem to run a lot more of these blood tests then they do here in Canada. At least then you'd know you had a complete celiac blood panel done. 

And if all that fails, you may have non-celiac gluten sensitivity. Symptoms are just as real as celiac symptoms but without the proof! Hang in there - I hope you are able to get some answers. :)

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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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      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.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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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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      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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