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Another Cheesehead


Jewitch

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Jewitch Newbie

I've been having trouble with gluten for a few months.  I have not been diagnosed with Celiac Disease yet. I saw my doctor this morning, but (of course) forgot to tell him all the sysmptoms I've been experiencing. ( I forgot to take the list I wrote). He  did the blood test but is reluctant to order the biopsy. He says many insurance companies won't pay for it. He said that I could have developed a gluten intolerance without having C>D>

 

I called my insurance company & the person I talked to said she "didn't think" the test would be covered because the "Cure" is so simple-" "just avoid bread & pasta". She said she'd check when I got pissy about it, but I'm not expecting a rapid reply.

 

As far as going gluten free, I'm lucky (I know, I know...weird saying that). The first gluten free grocery store in the country is within walking distance of my house, & the supermarket I regularly shop at has a dedicated section with a good choice.

 

Other than that, I'm retired, busy fixing up a crumbling old house & being "The Cool Aunt", & pretending to be a writer.  I follow politics, watch a lot of news, read almost anything, spend far too much time surfing the internet, & travel when the wallet allows.

 

And I am a Green Bay Packers fan. No Matter What.


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I was diagnosed with blood tests... wicked positive celiac "levels," which were confirmed a few years later with endoscopy (showing wicked celiac changes). Go online and learn about going gluten free. It's not nearly as hard as it seems... whole foods and some gluten free processed foods can make the whole thing way more tolerable and very doable.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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