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Deciding Whether To Have An Upper Gi Endoscopy

fromscratchmom

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fromscratchmom Newbie
fromscratchmom
Posted

Hi, all. I was told my new doctor that I should give up gluten, maybe not forever but at least for a year.

I asked the doctor if the blood test he had done meant that I had celiac disease or if it was more of a food intolerance that shouldn't be called celiac or what and he didn't really give me a good explanation. Mostly he just said that the test showed some gluten reactivity and that he would not call it celiac. Now that I've been gathering info, I'm wondering if he meant that the gluten reactivity level was not high enough to proceed with further testing that would lead to an official celiac diagnoses. So now that I know a little more about it I'll have to find out what the test was and the exact result.

When I got this news that I should give up gluten, I was just about to leave on a trip and I had a "detox diet" program on order from my chiropractor.

The doctor told me I didn't have to rush, just to get some books to read on it and go ahead and go on my trip. So I ordered two books from amazon and left home on schedule the next day. Ate terribly the whole time I was out of town but I did very well with my general feeling of well being for about 7 days. I kept telling my family members in Maryland that the B12 shots or the natural thyroid the doctor put me on must really be helping me tremendously. Then I got sick with some kind of stomach bug. I thought at first that it was the same IBS symptoms I've had on and off for over 20 years but I soon found out that I was really sick with fever and the whole shebang.

By the time I finally limped home from my trip, 2 days late my detox diet supplements had arrived as well as my gluten-free books and I was afraid of eating, a feeling I'm not unfamiliar with. So I started reading, started taking immodium (which I don't usually do no matter how much diarrhea I have), and started the Standard Process 21 day detox program. After a few days I went to my doctor to tell him I'd had what was most likely a virus but was getting worried about how long it was hanging on. He agreed I had a virus and sent me home. I found out that the detox plan might be "virtually gluten free" but had room for error and that I probably wouldn't order again in the future if I stayed gluten free.

Sooo... now I'm better from my virus, working my way through my detox and trying to be ready to feed myself in a real gluten free way.

Yesterday, a friend who has celiac disease recommended that I go ahead and see a GI doc and have the endoscopy. I'm really unsure... I don't want to start eating gluten again and I'll tell you why. As soon as I started reading my book I came across something that was new info to me... dermatitis herpetiformis. I was in the middle of a break out of a recurring, excrutiating rash that I've been getting for over 15 years now and as soon as I read the description and saw the pics of dermatitis herpetiformis I knew that is what I've had all this time that no doctor could diagnose for me and no nurse could cope with without losing her cool and trying to get out of the same room from me when seeing it. Thankfully, somehow, over the years, the rashes have gotten to be much milder but still definitely too itchy to ignore even if not as painful and I don't have them all the time, at least not most years.

I really see my friends point of view and I can imagine that having further info can be a great benefit in the long run. So I'm trying not to make a purely emotional decision, but I can't seem to talk myself into going back on gluten to get accurate results from an endoscopy, or to get a new recurrance of my rash which has never cleared up as quickly as it did with this last appearance and get that biopsied.

I'd like to hear from those who know: how likely will my time being mostly gluten free for the last couple of weeks make it that a quick endoscopy would give me false results? how long should I be back on gluten if I need to wait for scheduling an endoscopy? Is it worth it in the long run?

I'd like to believe that I wouldn't sabotage myself in the future feeling as glad to give up gluten as I do right now. But I know that I may be unrealistic if I can't admit that a more official diagnoses would help me.

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Skylark Collaborator
Skylark
Posted

It is completely up to you. If you feel like you will eat gluten without the diagnosis, then you need a biopsy. If you are willing to stick to the celiac diet (and you probably are celiac if you have positive bloodwork a rash that's spot-on for DH) there is no need for the biopsy.

As far as diagnosing, two weeks shouldn't be enough time to reverse intestinal damage but it would be best to go back to eating gluten until you can have it done. If you get a DH outbreak, you can insist on a biopsy of that as well. Folks here say it should be biopsied at the edge, not in the blistered part.

If you want more help interpreting your blood test, feel free to post the test and results and we'll try to help you out and explain better than your doctor.

fromscratchmom Newbie
fromscratchmom
Posted
  • Author

Thank-you for taking the time to respond. :) It truly means a lot to me in my worrying over this and trying to figure it all out.

I hate to go backwards by even a day, but I suppose I am concerned about how I might feel later when faced with all the situations I'm sure to face in the future where an "official" diagnoses might make some little difference to people who have had no experience with food intolerance and no need to consider whether or not mainstream medicine really has all the answers.

I'm sure I'll know which way I want to go after I sleep on it tonight. Then by deciding by morning, I can either get on with a life without gluten or at least start getting a test scheduled so that it doesn't delay my gluten free life for any longer than it has to.

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      By Russ H · Posted

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      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

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