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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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luvs2eat Collaborator

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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    • Babygirl877
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    • ErinV
      Hi- thanks for the reply. Happy to give more information. No one in my family or the fathers family has celiacs. We’ve all tested and neither of us, nor my other daughter have the genetic markers for it.    these are what the lab results say: Endomysial Antibody Titer- Normal value: <1:5 titer.  Hers were at 1:10 the past 3 times and then this time it came back on her portal as just “negative” Her platelets this time came back at 451, and the normal range is 150-400. They have been in the normal range the past three times. Tissue Transglutaminase Ab-  <15.0 Antibody not detected > or = 15.0 Antibody detected Her Value 76.1 this time. 8 months ago it was 140, 6 months before that it was 120 and the time before that it was 72. From what I’ve read and from the doctor, this is the most specific test for celiac and what we should focus on the most. 76 is still extremely high, but why did it decrease when nothing in her diet has changed?
    • plumbago
      Hello and welcome, Could you please publish the reference ranges for each test, including tTG-IgA and the endomysial antibodies? When your daughter had her endoscopy, was she eating gluten? I agree with your position, I would not want to subject her to another endoscopy and biopsy. It sounds like your doctor is saying that since her tiredness is not new that there's no real health status change. Personally, I don't like that assessment, and I would question it. From the bits you have posted, it does look like she has Celiac, but I would want to see a more comprehensive panel. It's good you've continued doing the blood tests, and are in general staying on top of it. (Are there others in either your family or the child's father's family that have had Celiac?) People without Celiac do not test positive, regardless of the level. Other moderators on this board may have more up to date information than I do, but I think that's still true. Plumbago
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