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Advice Needed! Please Help...

Juliette

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Juliette Rookie
Juliette
Posted

Hi everyone,

Ok, so here is my dilemma. I would really appreciate any advice you can give me.

I have been gluten free for three and a half months after having an extremely positive blood test for Celiac.

I recently met with a gastroenterologist who suggested I have an Upper Endoscopy to confirm the diagnosis and see if there is anything else going on (My health has only improved slightly since giving up gluten)

I was told I would have to eat a small piece of gluten for two weeks prior to the test. I was really reluctant to do this, because I've spent the last three months trying to avoid it entirely. So I decided to try a small amount of gluten and if I had any bad reaction at all, to tell my doctor that I was simply refusing to do it.

I ate gluten yesterday and the day before and nothing has happened.

So my dilemma is, do I eat the gluten for two weeks or not?

I live in England, and am therefore receiving my health care on the NHS. If I don't eat the gluten, and don't have the Upper Endoscopy, I cannot be officially diagnosed as a Celiac on the medical system, and therefore, cannot receive check-ups and further tests etc.

But if I do eat the gluten, I may be silently damaging my body, and could make myself worse than I was three months ago when I gave it up.

Does anyone know if there's any possibility of the Celiac blood-test providing a false positive? And also, does anyone know if it's possible to have no symptoms but still be damaging your body?

So my question is really...what would you do?

Any help would be appreciated! Very confused!

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Fairy Dancer Contributor
Fairy Dancer
Posted

Continue to eat the gluten for as long as needed to complete the tests to get the diagnosis at which point you can then stop consuming it again.

I recently tried a gluten free diet for a week but, as I was not undergoing testing and wanted to ask my dr for a blood test etc, I decided to return to eating gluten again for the time being. Yesterday did not go well when I had some weetabix.

Unfortunately, I must have had an upset stomach because within 30 minutes of eating it I threw up, started wheezing and felt horribly dizzy. I ejected most of it I think lol but am trying again today with some bread instead. I ate some a few minutes ago and thus far so good, just a bit of wheezing (I can breathe ok its just wheezy lol) and some mild dizziness/vertigo, but no barfing yet so the weetabix may have been a one off or the upset may have been due to something else.

I was testing for gluten intolerance but if I do get any more similar reactions to putting wheat back in my diet like the one yesterday I may well ask for an allergy test as well lol, as the reaction I had yesterday was similar to the reactions I get when I either take aspirin or anti inflammatories (which I can't take due to the fact I projectile vomit them back up and wheeze like an old woman after taking them) and duck (I did have an allergy skin prick test many years ago that showed an allergic reaction to duck feathers. For some time I thought I just had a problem with the feathers, but after a while every time I ate duck meat with the skin I would end up feeling very ill, throwing up and wheezing again so I stopped eating the meat just in case I had problems with that too).

So I will keep trying and speak to the dr about it.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have been gluten free for 3 months 2 weeks with a tiny bit of gluten will likely not be enough to insure a positive biopsy. Normally the advised amount is 3 to 4 slices of bread for about 3 months. If you have gotten relief from the diet and end up getting very sick from the reintroduction of gluten you do have your answer. False positives on blood tests are very, very rare while false negatives on both blood tests and biopsies are pretty common, up to 30%. While I understand you need for a firm diagnosis to satisfy the doctors if the challenge makes you very ill that is pretty diagnostic in itself. Gluten reactions can be delayed by up to a week so don't think if you don't react right away that you are in the clear.

ravenwoodglass Mentor
ravenwoodglass
Posted

Continue to eat the gluten for as long as needed to complete the tests to get the diagnosis at which point you can then stop consuming it again.

I recently tried a gluten free diet for a week but, as I was not undergoing testing and wanted to ask my dr for a blood test etc, I decided to return to eating gluten again for the time being. Yesterday did not go well when I had some weetabix.

Unfortunately, I must have had an upset stomach because within 30 minutes of eating it I threw up, started wheezing and felt horribly dizzy. I ejected most of it I think lol but am trying again today with some bread instead. I ate some a few minutes ago and thus far so good, just a bit of wheezing (I can breathe ok its just wheezy lol) and some mild dizziness/vertigo, but no barfing yet so the weetabix may have been a one off or the upset may have been due to something else.

I was testing for gluten intolerance but if I do get any more similar reactions to putting wheat back in my diet like the one yesterday I may well ask for an allergy test as well lol, as the reaction I had yesterday was similar to the reactions I get when I either take aspirin or anti inflammatories (which I can't take due to the fact I projectile vomit them back up and wheeze like an old woman after taking them) and duck (I did have an allergy skin prick test many years ago that showed an allergic reaction to duck feathers. For some time I thought I just had a problem with the feathers, but after a while every time I ate duck meat with the skin I would end up feeling very ill, throwing up and wheezing again so I stopped eating the meat just in case I had problems with that too).

So I will keep trying and speak to the dr about it.

It sounds like you may also have an allergy to wheat. If the wheezing gets really bad or you start to have trouble breathing get yourself to the hospital quickly. Some of us do have a true allergy to wheat as well as celiac.

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