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New super sensitive?


Alys

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Alys Rookie

Hi!  Just hope this is the right place for me to be.  I have done all the testing and scopes.  Went gluten free, still raised counts, the gluten free house, when that didn't work my GI put me on Fasano diet and low fodmap.  Finally my counts are below the threshold, borderline but still below!  It is hard to believe that my 7ppm flour was a culprit.

my spouse even went fully gluten free at work and throws his clothes in the wash as soon as he comes in since not doing that has led to issues.  My cousin just was hospitalized for refractory sprue complications.  Luckily so far I can keep my counts down so it looks like RS isn't in my future.

So howdy!  Hope this is the right spot, can't wait to learn more.


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cyclinglady Grand Master

Welcome to the forum!

Lucky you to have a celiac-savvy GI!  Looks like your modified gluten-free diet helped you!  Did you read this study?  Bet your GI did!  

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Many members have reported results like yours after going on this diet.  They were struggling to get their (or their kid's) antibody levels down even though they were gluten-free diet compliant.  Makes you think, huh?  

I personally have done better eliminating all grains.  I found this out after my diabetes diagnosis a year after my celiac disease diagnosis.  A Low Carb High Fat diet (or eat to my meter) really improved my health and blood sugar.  Grains, no matter what the type, impacted my blood sugar.   I also avoid most processed gluten-free foods and do not eat out (rarely).  Many of my food intolerances have resolved too.  Not all, (I keep testing) but I am happy with my progress.  

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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
    • 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. 
    • Russ H
      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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