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dkkurtzman

Testing - Gluten Free Diet

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Following surgery to remove a benign tumor from my thigh earlier in the year, I've been sick for more than 7 months with chronic fatigue, insomnia, brain fog, breathing difficulty, occasional D/C. Some days I can barely move. I even fainted once in a public place without much warning and cracked the side of my head/face up.

I've been through every "ologist" looking for a cause, including neuro, cardio, endocrin, rheumo, infectious disease, without finding a diagnosis. Currently seeing a pulmonologist (asthma and sleep study)and gastroenterologist.

Gastro took blood today to check for celiac and other conditions, and scheduled an endoscopy for later this month.

I noticed a worsening of my symptoms (major diarrhea and crippling fatigue) last week following a period of eating more gluten than i had been, and have been gluten free for about 5 days since.

The Gastro, who does think Celiac is a possibility and that gluten sensitivity is a real problem for some people even without true celiac, told me that being off gluten for a few days, even a few weeks, shouldn't affect these tests that much.

I know many people have posted on this forum that you must be consuming gluten for both the blood tests and the biopsy. But does anyone really know how much gluten you need to consume for the tests to be accurate, and how recently you must be consuming it? Will my not eating gluten in 5 days invalidate this test? And what about the biopsy - do I really need to start eating gluten again?

Any help would be greatly appreciated. Thanks!

DK

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Hello, and welcome. The five days gluten free should not affect your blood tests. Several weeks gluten free before biopsy could affect that. Tlhe fact is that no one really knows how quickly any given individual will heal - the younger you are and the shorter the time affected by gluten, generally the quicker, but if it were me I would not risk it if I wanted a positive diagnosis by biopsy. Doctors really do not know a lot about this and give all kinds of crazy advice to patients about gluten consumption before testing - BS like "Eat a big gluten meal the night before" :blink: or "One week back on gluten should be enough". But you will be different from me and neither of us knows how long before our guts start healing. What we do know is that in the absence of healing the autoimmune antibodies retreat and healing does occur. If you are in the early stages of intestinal damage that just might be enough to tip you into the negative range. Of course, there is no guarantee of a positive ever, just saying....

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With your symptoms, I hope that your doctor (or any one of them) has tested you for Vitamin B-12 deficiency. Those are ALL the symptoms I suffer from from my B-12 is low. If you have celiac, you could be suffering from this...but, also, it's common among many people--even those without celiac. If you don't have an appointment approaching soon, you might try purchasing over-the-counter sublingual Vitamin B-12 supplements. Because they're sublingual, a number of your symptoms will subside almost immediately if you are, in fact, deficient.

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Thanks for the replies. I have been tested for B-12 and D deficiencies. B-12 was low normal and I received about 5 weekly shots. Level returned to normal range but symptoms have continued.

D was low and i was taking prescription megadoses and have continued with daily supplements. At last check it was 31, which is in the 'normal' range, but everything i've read suggests 50-70 would be more optimal, especially for someone who is ill.

DK

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Okay, regarding the B-12....I also had injections, but my symptoms pretty much stayed the same. It wasn't until I started the sublingual B-12 that I started to see an improvement in my symptoms. My doctor prescribed 2000 mcg twice a day, and I feel fine, now.

Also, you should probably request a test of your thyroid function.

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