Waiting On Blood Test

[Gwir]

These forums have been a great source of information for me. Similar to some other posters, I just went for screening and in some ways I am hoping for a positive diagnoses even though the thought of going gluten free scares the hell out of me. Here's my story, any and all feedback is welcome.

I was always the smallest in my class. I had several issues outside of being underweight that I've always thought were completely unrelated. At around 9 or 10, I was told I was lactose intolerant and to cut out dairy. A year or 2 later I spend several days in the hospital with an intestinal obstruction. Doctor's thought I had Crohn's but nothing ever came of that after I was discharged. At 15 I began having seizures. Thought premise was they were probably related to prior undiagnosed concussions. I entered puberty late and remained smaller than most classmates through high school. I did continue to grow through college and I'm a normal ht of 5'9". My seizures went away by my late teens and I no longer have issues with dairy. I would consider myself completely asymptomatic of celiac.

After reading a lot on the boards, my family history is perhaps more telling. My mother throughout her life had several, again seemingly unrelated, "minor" health issues. She lost most of her hair in her 30's (alopecia). She was later diagnosed with a Thyroid problem, and later still diverticulitis. Everything changed when she was admitted to the hospital with a perforated bowel that became septic after a colonoscopy. She was hospitalized for several weeks after they performed a colostomy. There was a lot of debate among the doctors over the diagnosis, but the only ones that came up were Crohn's and Collitis. I never heard a mention of Celiac. She was readmitted a month later due to futher complications. She was discharged to a rehabiliation clinic after a few weeks. A few weeks later her condition worsened to the point where her intestines essentially disengrated and she passed away. At that time my search to answers led me to Celiac. I didn't put together all the "unrelated" issues. A short time ago, a chance conversation led to the topic of growth homones. My son is below the 5th percentile in ht and wt. Other than being consistantly constipated, he is healthy. Someone told us their son was similar until he got a diagnosis of celiac. After going gluten free he sprouted quickly.

SOOOO... after that long winded background my question is what should I expect after getting blood results (for both my son and I). Should I push for biopsies if blood work is negative, or chalk it all up to random chance?

[star25]

hi there im new here and my blood test came back negative luckly the gi doc

im seeing ordered upper gastroscopy just to check inside now testing me

through biospys as i had multi erosions (non ulcers) and my bloods always

shows inflammation, i would deffo advise camera as most blood tests for anything

dont always come back postive at least if you have the camera they can see the intestines.....good luck

[Gwir]

We got the results of our tests. Both my son and I got negative results. I haven't gotten the numbers on his, but the results they gave for me were:

Immunoglobulin: 270

Transglutaminase IGA: < 20

The doctors don't seem overly receptive to going forward with an endoscopy based on the results. I am basically asymptomatic at this time despite some issues in my youth, while my son's primary issues are growth and chronic constipation. Last week for example he went nearly 5 days without a bowel movement.

I know that false negatives are fairly common, but is it realistic for both to test negative if celiac was a cause of our issues? Any thoughts on whether we should go gluten free and see what happens? My son (age 9) is a VERY picky eater. We have discussed already why he had the blood test and what may happen with a gluten free diet. Obviously, he is interested in the potential to get bigger faster instead of being much smaller than everyone else. Can anyone else help with their experiences going gluten free with their children?

[Dixiebell]

Did they give you the reference ranges for the tests? Each lab can have different ranges.

We decided against the endo for my son because I had been reading that it too could be false negative like the blood tests. I wanted him to get better, so him and I started eating gluten free. And I figured that if he didn't get better, then we could do the scope. We have been gluten free for about six months and he is doing great. I noticed him get better within a few weeks. And as a bonus, I got better too. I have now had to take ALL dairy out of his diet because a stool test showed fat malabsorbtion and he is having some type of eczema. I'm thinking maybe casien is a problem too.