Continued Diagnosis

[MizGriz]

Hi, All. First post to this particular forum.

I'm Griz, FINALLY diagnosed in 1998 after about 8 years of misdiagnoses.

Diagnosed by biopsy.

Not the best at following the diet. Food is my comfortor, so when things get

rough, I get eatin'!

In late 2003, I was having a bunch of health issues, felt miserable, etc. I hadn't noticed

that I had a very acute reaction to gluten, just if I continually ignored the diet, so I wasn't willing

to entertain the thought that PERHAPS my ills were due to celiac.

I found a new GI doc who ordered the blood test be done to test for celiac. First, however, he told me to eat whatever I wanted for 2 months. WHAT? Permission to cheat?? KEWL. So I did. And was miserable

I knew by the way my body was reacting that this was NOT a good thing for me and before the 2 months was up, went gluten-free. He ordered the blood test AFTER having me eat whatever. He then called and told me the blood test was negative. I, indeed, did NOT have celiac disease. (And sounded quite pleased with himself! LOL!)

Given the way my body reacted and seeing the difference when I'm gluten-free, I figured he was wrong. I requested another small bowel biopsy. After a lot of cajoling he relented telling me, "I would bet the house it will be negative. The incidence of false negatives on the blood test is miniscule. If this biopsy comes back as celiac disease, I'll eat my hat." Well, sure enough two weeks later he leaves me a voice mail telling me he's munching on his Stetson. I, of course, was not surprised. There is now question of autoimmune liver disease... sigh.

Four months later, I started breaking out in hives. This got worse and worse, and would only relent with prednisone, which I took at 2 different times. The hives continued through summer, fall. In October, my abdomen became incredibly distended. My kids started asking was I eating wheat (yeah even they could tell) but I'd been 100% strict with the diet since February. I then gained 40 pounds in about 3 months. So I go back to the GI doc who says the hives are not liver-related, not diet related according to my observations. Now he wants to do ANOTHER blood test for celiac. I have no insurance at this point, so I'm not up for unnecessary testing, but can anyone shed light on WHY another blood test that showed a false negative in the first place? What's the most it will show him? That I have celiac??

[ravenwoodglass]

Hi, All. First post to this particular forum.

I'm Griz, FINALLY diagnosed in 1998 after about 8 years of misdiagnoses.

Diagnosed by biopsy.

Not the best at following the diet. Food is my comfortor, so when things get

rough, I get eatin'!

In late 2003, I was having a bunch of health issues, felt miserable, etc. I hadn't noticed

that I had a very acute reaction to gluten, just if I continually ignored the diet, so I wasn't willing

to entertain the thought that PERHAPS my ills were due to celiac.

I found a new GI doc who ordered the blood test be done to test for celiac. First, however, he told me to eat whatever I wanted for 2 months. WHAT? Permission to cheat?? KEWL. So I did. And was miserable

I knew by the way my body was reacting that this was NOT a good thing for me and before the 2 months was up, went gluten-free. He ordered the blood test AFTER having me eat whatever. He then called and told me the blood test was negative. I, indeed, did NOT have celiac disease. (And sounded quite pleased with himself! LOL!)

Given the way my body reacted and seeing the difference when I'm gluten-free, I figured he was wrong. I requested another small bowel biopsy. After a lot of cajoling he relented telling me, "I would bet the house it will be negative. The incidence of false negatives on the blood test is miniscule. If this biopsy comes back as celiac disease, I'll eat my hat." Well, sure enough two weeks later he leaves me a voice mail telling me he's munching on his Stetson. I, of course, was not surprised. There is now question of autoimmune liver disease... sigh.

Four months later, I started breaking out in hives. This got worse and worse, and would only relent with prednisone, which I took at 2 different times. The hives continued through summer, fall. In October, my abdomen became incredibly distended. My kids started asking was I eating wheat (yeah even they could tell) but I'd been 100% strict with the diet since February. I then gained 40 pounds in about 3 months. So I go back to the GI doc who says the hives are not liver-related, not diet related according to my observations. Now he wants to do ANOTHER blood test for celiac. I have no insurance at this point, so I'm not up for unnecessary testing, but can anyone shed light on WHY another blood test that showed a false negative in the first place? What's the most it will show him? That I have celiac??

Have you eliminated gluten from your cosmetics and toiletries? Is there anything you have started working or playing with in that time that could be a source of contamination? Clays like playdoh, paints, glues,have you done or had done any drywall work in your home? Have you explored the possibility that the hives are caused by another food? Pineapples and peppers will give me hives now that I never noticed prediagnosis. You know you are gluten intolerant or celiac avoid the stuff and the next time the hives break out you may want to call a dermatologist or allergist rather than the GI guy. Sounds like he would rather you weren't celiac and would love to get you back on the wheat, more cash for him. By the way many of us never show up on blood tests, I am one of those and if I listened to all the doctors rather than the allergist who did the elimination diet I would still be in constant pain, in a wheelchair, hoping to die.