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Upper Egd Negative But Have Many C. Symptoms


delsol

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delsol Newbie

I've had many of the symptoms of Celiac disease over my lifetime.

Even though I've tested negative on the blood test and the EGD

(lower intestine test). Is it possible that I may still have the

disease or be gluten intolerant?

I'm new to the site so I was hoping to see if anyone has a similar

experience to mine.

Easy bruising (always been this way)

excess gas

abdominal pain

use to have canker sores in mouth constantly but not now

weakness, lack of energy

diareah sometimes emergency

I've been diagnosed with mild gastritis and esophagitis (non baterial).

I'd rather not take medicine on a regular basis.

Thank you to anyone with advice


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ravenwoodglass Mentor

Now is the time to try the diet. Testing for celiac misses far too many of us for many different reasons. You have nothing to lose by trying the diet. We are here to help and support you in that process. Ask any questions you need to and start your gluten free trial today. You need to be strict and give it at least a couple of months.

Lynayah Enthusiast

Sounds like me! I also had all of the above plus extreme body aches, HORRIBLE foot and lower back pain, vitamin D deficiency . . . the list goes on and on (see my signature).

Initially, my Rheumatologist gave me a "Celiac blood test," which came back negative. However, when I went to University of Chicago for a second opinion, they explained to me that he did not check my IgA, which is important.

Did the doctor check your IgA? Mine came back extremely high, indicating a strong gluten-intolerance but not necessarily Celiac -- some folks who are highly gluten-intolerant get as sick, if not sicker than some with Celiac.

I found it all very confusing at first. I found a book at the library that describes the testing process particularly well: Healthier without Wheat, by Dr. Stephen Wangen.

One mistake I made: I gave up gluten, felt better (despite making some mistakes), then when I went for my second opinion, I was told I needed to eat gluten for many weeks in order to be tested.

Going back on gluten was hell. It would have been much easier if I hadn't given it up first, and I probably would have had an even more accurate reading. During the challenge, I ate only one slice of bread per day. It was all I could handle. Augh!

If you want to go through the tests, you might not want to give up gluten just yet.

However, many people opt to just do the diet and not go through all the tests, particularly if they don't want weeks of sickness or if they are concerned about insurance coverage. For me, I wanted to know.

That said, I'm not convinced that the tests always show the results they should. Ravenwoodglass makes an excellent point.

For example, I spoke with a man who owns a gluten-free store. His daughter has the gene, but he and his wife tested negative. His wife can't eat gluten. Weird . . . and I hear stories like that all the time. Very confusing.

Whichever way you go, we are here to support and help you, just as Raven says. Glad you're here.

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