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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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    • Scott Adams
      I would pressure the lab to do the IgA control test for free so that you won't write a poor review about their testing services. You could get this done at any time, whether or not you are gluten-free, however, the celiac disease Tissue Transglutaminase tTG-IgA test must be done after you've been eating lots of gluten for around 6 weeks. This way you could salvage the results of your tTG-IgA test, as long as you were eating lots of gluten beforehand.
    • Scott Adams
      Given your strong reactions it would be wise not to eat things offered to you without reading the ingredient labels. It's possible there was indeed gluten or some allergen in the chocolates--barley malt is a common ingredient in some chocolates.
    • trents
      Yes, an IgG panel is the logical next step. However, you would still need to be consuming normal amounts of gluten to ensure valid IgG testing. Since it has only been a week that you have been off gluten, there is still likely time to restore antibodies to detectable levels before the blood draw. IgG antibody tests are not quite as specific for celiac disease as are the IGA tests but they are certainly valuable in the case of IGA deficiency. They also seem to have a little more "staying power" in the sense of detecting celiac disease in the case of those who may have already started a gluten-free diet as long as they haven't been on it for an extended period of time. But don't rely on that. Get back on gluten if you can possibly endure it if you intend to go forward with IgG testing. This might be helpful:   
    • SEQ
      Thanks @trents. I have exchanged some messages with the clinic today, and they are saying that the reason there is no result for the total IgA levels is because I don't have any. Apparently a negative result means that it does not appear as a line on the results at all. I am not sure I buy this, but it is what they are telling me. I am leaning more towards the theory that they didn't test it in the first place. But, working on the basis that the test result was zero, I asked what the next steps would be, given that I apparently have no IgA antibodies. They have asked if I now want to have a tTG-IgG and a DGP-IgG test. Is this really the next step if I have no total IgA?
    • trents
      IGA deficiency is a lot more common than we used to think but I can't give you a number. Doctors used to believe it only happened in children but we know better now. Every doctor should order, at the very minimum, total IGA and tTG-IGA. It may be true that you don't have to worry as much about cross contamination if you have NCGS but that is not a given. By the way, welcome to the forum, @SEQ!
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