Hi Everyone,

I have posted in the past as my daughter has been Celiac for 1 1/2 years now. At the time of her diagnosis, after reading the symtpoms, I was sure I had suffered from celiac. The only problem is.... I am overweight, actually obese, so I was never taken seriously. I did the Entrolab and my results were :

Fecal Antigliadin IgA 209 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 35 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 371 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 42 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0302

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)

With blood tests, they came back negative. My doctor referred me to a GI specialist. He thought I was out to lunch but decided to do a biopsy anyway. The biopsy was yesterday. Before the procedure he said that it rarely happens that people have negative blood work but positive biopsies. After it was over he said " It looks exactly like Celiac." My question is , I thought they needed a microscope to confirm the diagnosis? Can they actually tell with just the microscope? Could it be something else instead?

Any thoughts appreciated

Natalie

In some cases the damage is so minor it can't be seen by the naked eye. I'd say if your GI could see the damage, it will most likely show up in the microscope, too.

It's a mistake, and doctors should know better, but many celiacs are overweight. There was a woman who used to post here who lost 100 pounds when she went gluten-free. This misconception is probably part of the reason it's so under-diagnosed.

I'd start with the gluten-free diet today!

Yeah, they can see indications of celiac in "scalloping" in a particular area.

So hey, interesting comparison with the Enterolab results!

About a 1/3 of celiacs are overweight so you just can't tell by someone's weight.

Thanks everyone,

I started the gluten free diet on Friday afternoon. I haven't noticed a difference yet, I made need to give up dairy for a little while.

Yes, I thought it was interesting the comparison between Entrolab and the GI doctor. In Canada we need a biopsy confirmation to get tax credits for food, so I wanted the biopsy. I think the Entrolab results helped push him to do a biopsy.

Thanks again for the replies.

Natalie

you definitely need to eliminate dairy from your diet. you tested positive for it through Enterolab.

Does that mean forever, or just until my intestines start to heal?

Natalie

If you really have a casein intolerance, it's forever.

I say it like that because I had a 32 on the Enterolab test. I went off dairy for six months and saw no improvement whatsoever. I went back on it and saw no difference at all.

I would definately go dairy free for a time, but at some point you could test it to see if you're really casein intolerant. Tests aren't perfect.

Thanks Carla.

Do you know if doctors can do other tests for casein allergies?

Natalie

doctors can do a true "allergy" (immediate reaction) test by doing an IgE food allergy test for casein/dairy. For "intolerances"/delayed allergies, they can run an IgG blood test for it.

It's far from rare! A 2004 Columbia U. study showed only ~66% of those w/ "severe villous atrophy" were positive for celiac disease on the blood test.
More recent studies have shown a strange backwards effect where at some point on the spectrum of villous atrophy, the correlation to the blood test becomes less likely. Can't recall where I read this, but there is plenty of talk about "seronegative" & celiac.

Yup, I'm one of those negative blood works and positive biopsy people. The endoscopy was exploratory because I was having so many problems. I wasn't evenout of the drugs before the dr was saying it is text book celiacs and the biopsy results agreed. Don't know what to tell you about the blood work...

It's nice to hear I am not the only person with negative blood work and a positive biopsy. I am concerned about my father who has suffered from severe depression, balance issues, white matter on the brain ( they are calling it early dementia), losing weight, upset stomach. They have done the celiac blood work after I insisted, it came back negative. I would like to get him to have the scope but here in Canada you need a referral and I can't get him to leave the house (depression).

Natalie