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Surprising Doc Visit Today

RakkasanWife

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RakkasanWife Rookie
RakkasanWife
Posted

Being that we moved to Germany a month ago, this was our first visit with the doctor. Considering I was expecting a military doctor, I went in expecting to have to argue, coerce, bribe, fight, etc to get a referral to a GI doc. I told the doc that my 12 yo dd was diagnosed 4 months ago with Celiac by symptoms only (no blood test or biopsy) and was put on the diet. I told her that at one point we decided to go low gluten instead of gluten free (in case I got a military doc that didnt believe me, she'd still have a small amount of gluten in her system so she could be tested) and she broke out in hives, so she has been as gluten free as possible for the last 3 full months. Its worked wonders. Her stomach aches are gone and her eczema has greatly improved. The doctor said that as far as she's concerned...Morganne has Celiac. "If the diet works, then that is diagnostic". I was really surprised. Im sure its because she did her medical training in the UK (her bedside manner left something to be desired, but beyond that she was GREAT). She's referring us to the GI doc so that we can talk to them about testing the babies (I will not concent to the biopsy, but I do want the blood tests) and myself for Celiac as well. Considering my grandfather and one of my sisters has had a positive diagnosis, and now my daughter...I'd say its safe to assume that I have celiac disease also...but I want it documented in my chart.

Ok, I think I'm done rambling. Just wanted to share that every once in a while, you get a pediatrician who actually listens and responds...then hell actually does freeze over and you get a second one right behind the first lol

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Ursa Major Collaborator
Ursa Major
Posted

Wow, how nice to actually find one of those few incredible doctors who know what they're doing, especially after just moving to a foreign country. I can imagine that having a doctor who understands will make your stay in Germany so much more pleasant.

taweavmo3 Enthusiast
taweavmo3
Posted

That's great that you found a supportive doctor! We have finally found a very informed doctor as well, which is a refreshing change. There are good ones out there, it's just that sometimes you have to go through a few duds first, lol.

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    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      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
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      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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      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      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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      Celiac flare years after diagnosis

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