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Help! Should I get tested?


Averypolk

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Averypolk Newbie

I have been gluten free for about 2 years (with alot of mess ups). I have never been tested for celiac, but I am very sensitive and react to all amounts of gluten. I didn't have health insurance at the time I figured out I couldnt eat gluten so I never got tested. I just did a elimination diet and tested it. I know I need an offical diagnoses to make sure its celiac, but I'm a senior in college, a college cheerleader, and a waitress. If I had to eat gluten for a few weeks in order to be tested, it would wreck my life. I cant put myself through this. Is it worth it to have a diagnosis? Does it make a difference if I am just self-diagnosed celiac? 


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cyclinglady Grand Master

I am formally diagnosed, but the funny thing is that 12 years prior, my hubby went gluten free per the advice of his GP and my allergist.  The diet worked.  Later, I was pretty shocked when  I was diagnosed.  What are the odds?  

Does my hubby have celiac disease?  Who knows?   Autoimmune runs strong in his family (our kid is doomed).  He refuses to do a challenge because frankly, we like paying our bills.  A six week challenge would make him very sick.  He has been gluten-free for 17 years.  What nut would do that if he did not see dramatic results?

Only you can decide what is best for you.  If you need that diagnosis, at least consider doing it during the summer and not during classtime.  My diagnosis has made it easier for our kid to get tested, family and friends are more supportive as well as medical.  Hubby is thriving and his current doctor takes him seriously.  He was once hospitalized and I made sure he remained gluten free.  

Two different paths but both eventually merged into good health. That is what really counts.  Good health.  

Good luck on your studies!  My daughter goes off to college next year.   It is so complicated and competitive now.  

 

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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. 
    • 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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