Where To Go From Here?

[scstampin]

I need some opinions on what to do in the situation I am in, and also wondering how common it is to get a false negative on a biopsy and blood test?

A little background info... I will try to keep it as brief as I can.

I had my gallbladder out last december, after 4 years of uncomfortable pain in my upper middle abdomen. After having my gallbladder out over the last 6 months I have still had pain in the same area, only now it is WAY worse! Severe abdominal pain that at times leaves me unable to even walk. After the 2nd ER visit in a couple of months due to this pain, I was referred to a GI doctor.

In the meantime, my 3 year old daughter, has been having severe constipation, along with other symptoms I now know are related to celiac disease, and she was also referred to a pediatric GI. They tested her thyroid, and did the blood test for celiac.

Before we got her results back from anything, I had an endoscopy and colonoscopy done upon my GI docs orders. We had talked nothing of celiac disease, but when I was in the prep room I asked if they would biopsy me for celiac. The nurse said celiac disease would NOT cause my abdominal pain (?), but they would do the biopsy. (nevermind that I have diarreah all the time, low iron, and other issues too).

My biopsy came back negative for celiac, and the endoscopy showed inflammation in my esophagus and stomach and bile pooling in my stomach, and I was diagnosed with GERD. The pathology report showed Barrett's esophagus.

I did ask how many biopsies they took in the small intestine, and I was told 2.

Shorty after that we got my 3 year olds blood test back, which was positive for celiac. We then had her endoscopy done, which also came back positive for celiac. Her symptoms are severe constipation and compacted stool, low iron since about 1 year of age, distended belly, short stature, colicky as a baby, and irritable as a toddler.

As soon as we got her biopsy result, I took my other 3 kids in to have the celiac panel done, as well as myself, even though I have had a negative biopsy.

I have not gotten the kids results back yet, but mine came back and are negative. After finding out my daughter does have it, I thought for sure my blood test would come back positive with all the symptoms I have, and I though that the biopsy was probably a false negative.

What would be the chance though that both would come out false negative?????

Here are some of my main symptoms...

diarrhea and constipation (I seem to go from one to the other, never in between)

low iron for years

infertility (in later years, no trouble with 1st 2 kids, but had a hard time getting pregnant trying for 3rd, was put on clomid, and got twins!)

dry skin

anxiety/depression

lots of stomach aches and nausea

upper abdominal pains

easily bruising (as of recently)

fatique

insomnia

just overall "yucky" feeling

So, as I said, I was surprised mine came back negative. Knowing now that my daughter has it, and with my symptoms, I really thought this was going to explain all of my issues!

I know I could just go gluten free and see if it helps, but I also feel like I would like to have a diagnosis to know for sure since it is gluten free for life, and I don't think I want to go off and then eventually go back on to get a diagnosis.

What would you do from here? Get another blood test in a few months, do the gene testing????

In case anyone is interested here were my blood test results:

IgA 4 (normal range 0-19)

IgG 2 (normal range 0-19)

tTG <2 (normal range 0-3)

Thanks for any input you can give me!

[Jestgar]

You may never get a positive result, some people don't. Do you really want to keep eating gluten until you've done so much damage to your body that a doc will diagnose you without a positive test? I would suggest you cut out gluten for the whole family - it will make it easier for your daughter anyway - and see how you (all of you) feel in a few months.

[MitziG]

You did not have a complete panel done. They left off the two newest, and most specific tests- deamidated gluten peptides, and endomysial antibodies. If you really need that dx, go ask for those tests. BUT, they can still be negative. Some celiacs just don't show up, and you may be one of them. Or you may be non celiac gluten intolerant, and there is no test for that.

The best test is to go gluten-free and see if your symptoms resolve. If they did, would that not be enough to assure you that gluten must be avoided permanently?

Honestly, with what I know now, I firmly believe NO ONE should eat gluten. Ever. You will be a healthier person without it, whether you are celiac or not!