Jula

Hi Scott,

Thanks for the great information.

The "negotiation" is my euphemism for the discussion with the nurse at my doc's clinic and eventually, the doctor. It took place because they said I would have to be on gluten again for 6 weeks prior to the upper endoscopy/biopsy.

As I stated previously, I am highly reactive to tiny amounts of gluten and the impact lasts for weeks and can be debilitating. The first time I had COVID I thought I had been contaminated at a friend's house because I had all those symptoms (extreme joint pain, muscle pain, exhaustion/fatigue, coughing, worsening asthma attacks, more) but no fever. It turned out to be COVID and the fever came a day after the initial group of symptoms.

Granted, not all contaminations are the same in the intensity of their impact, but to have gluten every day for 6 weeks --- I know I could not handle it and as I'm self-employed I could not afford to work minimally for much of that time. Hence, the discussion/negotiation/whatever you want to call it.

They asked me how long I thought I could tolerate it, I said maybe a week. Then I was contaminated at a restaurant and was reminded of the impact for the following 2.5 weeks and I started getting anxious about doing this to myself for such a long time, wondering how long it would last and worrying that the dermatitis herpetiformas would come back which took more than a year of excruciating itching to clear up completely.

So, that's the back story.

Neither the doc or the nurse mentioned 2 weeks, but it doesn't matter at this point. I don't think its worth it even for the one week, especially if as you say they may not be able to gather any information from that, although I don't know how that would be true being that my immune system knows with less than a crumb and gets busy attacking my small bowel. I can't imagine that wouldn't show up in there, but I guess that could be the case, so again, not worth starting the new year feeling like crap and unable to get the money I need to pay my bills/survive in the bigger picture.

The blood work that was used for my initial diagnosis was done after I had been eating gluten my entire life, so well beyond the gluten challenge.

Thank you, though, for taking the time to share the resources and your perspective!

Thanks, trents, for both the welcome and the perspective. That is exactly how I'm feeling at this point. The main reason I was considering this particular confirmation is because 2 primary care physicians, one an internist, had said this should be done because they could not be sure based on the information I have that it is celiac and not gluten intolerance.

When I asked why that mattered, either way I would have to remain gluten free, the internist especially insisted that she would have to watch for a different set of repercussions on other organs.

I could find no proof of this but the questions she raised made me think I should have a definitive diagnosis.

But now knowing that it's more than a meal's worth of contamination needed, I don't think I can do it, although  the occasional contamination from eating at a friend's place or restaurant may still happen and if it does and I end up with the rash again, I could get that biopsied and have the same results, it seems.

Thanks, again.

I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009.

I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied.

For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat.

I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed.

But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things.

I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all.

None of that helped. Going gluten free did.

I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before.

I know this is not a unique story for people with Celiac pre-diagnosis.

My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that?

Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum!

I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term.

Thoughts?