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Positive Coeliac Bloods


fairydust81

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fairydust81 Rookie

So I'm guessing then that the likelihood is I do have coeliac and this awful 11year old rash is the associated DH?

Found out today (unofficially as I work in the building where the labs are based) that my coeliac bloods are highly positive :-(

Feeling somewhat elated that after 11 years I have an aswer but then downhearted that after my biopsy in two weeks I'm facing a huge lifestyle change with regards to what I eat, how I cook etc....scary


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ravenwoodglass Mentor

The diet and lifestyle do take some getting used to but it is so worth it to feel so much better. Since you are waiting until after your biopsy is done to start the diet read as much here as you can to prep yourself for the biopsy day as you can go gluten free the day the procedure is done. You don't need to wait for the results as with positive bloods you need the diet no matter what the biopsy results are. We are here to answer any questions you may have.

nora-n Rookie

I had this rash too.

The diet is not very hard, but one ends up cooking and baking more than before.

The worst part is eating out.

One really has to talk to the waiters or cooks or the people who made food, if you visit relatives or friends, and get them to tell you what they used. Best if they understand how strict the diet must be (no cc either) but that is doable too.

Mummyto3 Contributor

My daughters bloods were very high too (she's 9). She was diagnosed on 7th June and biopsy will be 5th July. As her results are so high in blood, meds are sure biopsy will be positive. So next week is her last week of being a 'gluten'. I'm so desperate to get her off it now as she's so ill, but I don't want to mess up the biopsy.

Our household will either be completely gluten free or mostly gluten free. It's a whole new world for all of us and it is scary when you think about it. I felt the same way about having to take tablets for the rest of my life for an underactive thryroid. It freaked me out :(

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    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
    • 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. 
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