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natalie

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natalie Apprentice
natalie
Posted

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

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CarlaB Enthusiast
CarlaB
Posted

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!

Nancym Enthusiast
Nancym
Posted

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.

natalie Apprentice
natalie
Posted
  • Author

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

alamaz Collaborator
alamaz
Posted

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

natalie Apprentice
natalie
Posted
  • Author
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

CarlaB Enthusiast
CarlaB
Posted
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.

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natalie Apprentice
natalie
Posted
  • Author
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

happygirl Collaborator
happygirl
Posted

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.

Murph Newbie
Murph
Posted
Before the procedure he said that it rarely happens that people have negative blood work but positive biopsies.

Natalie

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.

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

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...

natalie Apprentice
natalie
Posted
  • Author

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

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      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
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