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Just Saw The Nurse Practitioner...


beachbirdie

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beachbirdie Contributor

It's time for me to get serious about gluten free living.

She was great actually. I resisted seeing her because she is new to my doctor's office, and my doc is an excellent and intuitive integrative medicine doctor with whom I've built great trust. She really thinks "outside the box".

Turns out the FNP also has celiac, and is very knowledgeable. I will trust what she tells me!

I had only one positive test, the TtG IgG, and she was willing to send for biopsy if I wanted but said (as is well known here) biopsies miss a lot. She suggests that I am likely in the early stages of damage, and though a biopsy may not show anything, and my skin rash is not yet widespread, she would say I AM gluten intolerant and it doesn't make sense to keep eating it just to make myself really sick.

When I got home and looked at the diagnosis sheet, she had written gluten enteropathy. Not sure how I feel about having that defined in the record, but I am glad I have something concrete that I can point to and help my husband understand that I am NOT tilting at windmills, something real is going on.

They are going to re-test only the TtG IgG in a year, and see if it has dropped. Good enough for me.

I'm not happy to have another disease, but maybe I've had it all along and could have avoided thyroid issues if I'd known. I am sure glad that I can get off the gluten now for good. It's been an uncomfortable 6 months.


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pricklypear1971 Community Regular

Excellent!

Bubba's Mom Enthusiast

I think it might be good to have the gluten enteropathy in your record? If you need RXs in the future, they'll know to be careful in what they prescribe, and if you are ever hospitalized it's official for food restrictions.

I'm glad you've got got good medical care people to go to. I don't have that here, and I think it's really important?

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      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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