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Had positive blood tests, waiting for endoscopy.


kittymeow

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kittymeow Newbie

Hello. After months of pain (but symptoms started years ago) i went gluten free and noticed a huge difference. I went to see my doctor who doubted I had celiacs but told me to get my blood tested and to eat gluten for 4 weeks before my blood test. I did this and i believe the antibodies? in my blood were at 45 when a normal person is at below 12. (unsure if this was antibodies or something else I was kind of in disbelief when she was telling me). She says without a doubt im celiac but is sending me for a biopsy of my small intestine to confirm the results. I live in Canada and im unsure how long a referal will take to actually have the biopsy done. Currently I have decided to go gluten free and treat it as celiacs and then 4 weeks prior to my biopsy I will eat gluten to prepare for the test. Is this the best practice or am I better to eat gluten fully until the test (even if that could be months away)? thanks in advance! this is all so new to me 


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cyclinglady Grand Master

Welcome!

Sorry for the delay, I was hoping someone from Canada would be able to respond.  

It sounds like you are doing the right thing by going gluten free now and then reintroducing gluten a few weeks prior to your endoscopy.  It is not the best situation, but we all have various insurance, provider or financial restrictions.  The other possibility is to remain on gluten and try to get an earlier appointment. 

Take a look at our Newbie 101 thread located at the top of the “Coping” section of the forum.  It contains a lot of valuable tips.  

Questins?  Just ask.  We are here to help one another. ?

 

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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
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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.
    • 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. 
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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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