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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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    • 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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