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How important is it to get a celiac diagnosis?

Carolyann
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Carolyann Newbie
Carolyann
Posted

How important is it to be “officially diagnosed” via bloodwork or biopsy given my history?

Symptoms: chronic loose stools, abdominal bloating & cramps for 10 years. Chronic migraines, diagnosed Hashimotos thyroid (autoimmune) for the past 50+ years.  History of colon polyps for the past 20 years. I am English (some Irish heritage). For several years I have had an aversion to breads & pasta. A little over a year ago I tested positive for HLA-DQ2.5 haplotype. I immediately went gluten free & my signs & symptoms resolved within a short time. I am terrified of going back on gluten in order to be diagnosed & wonder how important a medical diagnosis is given there are no treatments other than going Gluten-free? I’m 73.

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trents Grand Master
trents
Posted

Some people seem to need an official diagnosis to foster the resolve needed to keep from cheating on the diet. You know, "Maybe it's something else besides gluten." "Or maybe it's just coincidence that I get sick when eating wheat." Other than that, save the bucks. Your improvement when going off gluten is the proof in the pudding.

Carolyann Newbie
Carolyann
Posted
  • Author
6 hours ago, trents said:

Your improvement when going off gluten is the proof in the pudding.

Trent, That’s pretty much how I feel. I am a nurse & health educator (retired) & I’m pretty confident that my self-diagnosis is accurate & that my symptoms are not some other ailment. Ironically, a doctor friend (also retired) keeps urging me to get an “official diagnosis.” Yet, he cannot give me any strong reasons to be diagnosed by biopsies or blood tests. I see my internal medicine doctor in a few weeks for my annual exam so will  see what she says.

Scott Adams Grand Master
Scott Adams
Posted

To me it sounds like self diagnosis may work for you. A side benefit will be lower life insurance, and possibly private health insurance, premiums for life.

On the down side it may be harder for you to get follow up medical care, but many people who are diagnosed don’t seem to be getting this anyway. I have excellent health insurance through Kaiser, yet they’ve never offered me any follow up tests unless I’ve pushed them for it.

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      The Happy Tart review

      By trents · Posted

      Was the card itself lost or just the record or both?
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      We were flabergasted that the owner would not acknowledge a $50 e-gift card I purchased for my celiac wife. My wife tried to open it in the store and was informed there had been a system change and they could not find the record. No worries, she was told, just talk to management. Six months later, and numerous absurd back and forths, and the owner literally informs me there have been "bad actors", so she can't make good on this lost gift card. In other words, she accused me of lying and committing fraud... over $50! Please be careful with your orders and purchases here.
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