How Many: Blood Tests Negative, But Celiac Or Gluten Sensitive?

[Mmom]

Hi all,

I was wondering how many tested negative on blood panel but are indeed celiac or gluten-sensitive since much of what I've read here seems to indicate this possibility.

My blood test was negative for celiac, but 1.) I in no way eat the equivalent of 2-4 pieces of bread a day - I have always been a healthy fresh-vegetables-and-meat person anyway; and 2.) it seems that gluten exacerbates or brings back my stomach and bowel troubles.

Now, I haven't had problems until the last two months when in the beginning I felt I had a stomache flu that kept coming back! but I go from feeling sick to better and then sick again, and I'm losing weight - too much. I did feel better going gluten free for about two weeks but am guessing that is too soon to tell? All I know is that in a fit of perversity and upon the results of my negative blood tests I ate fried oysters and flour tortillas and now I am ill since. I should add that non-gluten fried food like bacon is very painful too.

My latest and greatest symptom and pain is the feeling that I have to defecate ALL the time. I actually feel pain in my lower colon area. No D lately but straining with bathroom visits and pain. Now have bleeding hemmoroids. Pleading with the primary doctor and begging for help for my pain has got me into the gastroentologist and he scheduled me for a colonoscopy in two weeks - the earliest. He suspects colitis. Don't have colon cancer in family hisotry but I have ALL the symptoms of it so I'm scared and freaked out.

Should I try enterolab? I'm trying to be gluten free now to see if I can feel better.

[CarlaB]

I ate wheat free but not gluten free for three years and came out negative on the blood panel. I came out VERY positive at Enterolab and get sick even when I get a minor cross-contamination.

[dlp252]

Well, my testing doesn't count since I did it AFTER I went gluten-free. I had both blood tests and biopsy, but neither my doctor nor I thought either would show anything...did it just for a baseline and because he was going to be in there (looking for damage from GERD) anyway.

I went gluten-free at the beginning of November and did see a little improvement. Then I decided to try the Enterolab testing--the results came back in December. They confirmed that I was gluten intolerant, casein intolerant and had one of the main genes associated with celiac. That was enough for me, lol.

I improved a lot more once cutting out the casein. The biggest two improvements are that I haven't had a sinus infection since October! I was getting them every 6 weeks, almost like clockwork...and I had pain in my knees almost contantly for several months...that has gone away too. My sense of smell is returning slowly but surely, and I have a bit of color in my checks again.

I'm still trying to figure out what ELSE I'm intolerant to to get rid of these last few nagging symptoms.

[Becky6]

Both my daughter and i were neg but clearly can't have gluten. If we get the slightest cc we are very sick. Neither of us ate that much gluten prior to testing though.

[Guest nini]

my daughter's test was also negative, but she obviously has a major problem with gluten and has absolutely thrived on the gluten-free diet.

[NSG]

Blood work for both me and my daughter were negative - but after 16 years on a gluten-free diet - what else would they be! The slightest bit of gluten makes her sick and I am just getting over a full blown attack after an accidential ingestion. That's enough proof for me!

[Smunkeemom]

The doctor originally told me that my blood test was negative, but I found out 2 years later that it was positive, when I asked her about it she said "we don't like to put people on the gluten free diet unless they are really sick"

I wonder how many "tested neg." but really had positive results.

moral of the story: ALWAYS get your actual lab results, never believe the doctor, always check it out for yourself.