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Sub-clinical Celiac Vs Celiac - Huh?

LauraD

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LauraD Newbie
LauraD
Posted

I saw my GI doc and he ordered the blood tests which haven't come back. The lab couldn't find them!! So probably will have to do again. Anyways, at this point because the biopsy came back "suggested of gluten-sensitivity enteropathy" the doc says I have sub-clinical celiac. Basically he said it means I don't have all 5 markers for Celiac - just the one - the biopsy. Isn't the biopsy the gold standard though? I'm just really confused because he said if the blood comes back negative then I don't have Celiac and don't have to follow a gluten-free diet. However, he set me up to see a nutrionist. They called and said the diagnosis was "sub-clinical celiac".

I'm just confused now. I'm also starting to get depressed about this whole thing. I feel like even trying to read labels is a big challenge because it is SO confusing! I don't see the nutritionist until Oct 18th which is a long time. Should I start gluten-free diet now? I don't really have any bothersome symptoms - at least I didn't think I did. I get migraines, irritable, etc but I thought that was perimenopause now I'm wondering if it is all related to gluten.

Thanks for reading - listening!

Laura

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AndreaB Contributor
AndreaB
Posted

It certainly won't hurt you to go gluten free and see if you recognize a difference in how you feel. If your blood work comes back negative and you want something more sure, you could get tested by enterolab. They do stool samples. The antibodies are in the intestine first, then the blood. It may be that you have damage without it having hit the blood stream yet.

Enterolab's website is Open Original Shared Link.

eKatherine Apprentice
eKatherine
Posted
I saw my GI doc and he ordered the blood tests which haven't come back. The lab couldn't find them!! So probably will have to do again. Anyways, at this point because the biopsy came back "suggested of gluten-sensitivity enteropathy" the doc says I have sub-clinical celiac. Basically he said it means I don't have all 5 markers for Celiac - just the one - the biopsy. Isn't the biopsy the gold standard though? I'm just really confused because he said if the blood comes back negative then I don't have Celiac and don't have to follow a gluten-free diet. However, he set me up to see a nutrionist. They called and said the diagnosis was "sub-clinical celiac".

I'm just confused now. I'm also starting to get depressed about this whole thing. I feel like even trying to read labels is a big challenge because it is SO confusing! I don't see the nutritionist until Oct 18th which is a long time. Should I start gluten-free diet now? I don't really have any bothersome symptoms - at least I didn't think I did. I get migraines, irritable, etc but I thought that was perimenopause now I'm wondering if it is all related to gluten.

Thanks for reading - listening!

Laura

The doctor's wrong. If you test positive on any one test, you have gluten intolerance, and you need to be gluten-free. You got a positive biopsy, which means you definitely have celiac. Some people with positive biopsies don't have intestinal symptoms, but this does not mean it's safe to eat gluten! Start the gluten-free diet, and ask specific questions as they come up.

CarlaB Enthusiast
CarlaB
Posted

You're doc is wrong. Damaged villi indicate celiac. The problem is most docs, even GI's are poorly educated on the disease. Even if it were "sub-clinical", then you still would want to go gluten-free. Telling you it's okay to eat gluten until you're diseased is like telling a smoker with sub-clinical emphysemia he doesn't need to quit until it's at a clinical level!! You actually have more proof than a lot of us here!!

You are definately having the reaction, don't wait till the damage gets worse to go gluten-free.

jenvan Collaborator
jenvan
Posted

Just read this today--on subclinical and unusual manifestations--or folks who don't have classic GI syptoms. Open Original Shared Link Villous atrophy is pretty darn specific to Celiac...maybe also with giardia (I think you'd know!) or a cow's milk intolerance (more rare response). Doctors are just now starting to realize that not all *Celiacs* experience the classic symptoms. I would definitely pursue the diet. You said you didn't really have any "symptoms." How did you end up getting tested?

Getting started--one of the biggest helps for me was ingredient lists that helped me identify safe and non-safe ingredients in labels. Ck them out here: https://www.celiac.com/st_main.html?p_catid=12

PatrickCA Newbie
PatrickCA
Posted

The biopsy is the best evidence of Celiac. The Drs. may not know that the blood tests are not very sensitive. They *are* specific. If they (aTTG or aEMA) come back positive you most likely have celiac. But if they are negative, it just doesn't say much. This is because most studies on test sensitivity (how often the test is able to identify a person that eventually is proven to have celiac) are usually done in academic laboratories, and not at major diagnostic facilities that perform the testing. So the sensitivity is likely lower that those reporoted in the literature.

I certainly don't think you need to have all five markers either.

I agree with others here, you should probably eliminate gluten. But if you do so, make a committment. It is truly all or none.

The labels are a little hard, but it gets easy fast! Hang in there.

LauraD Newbie
LauraD
Posted
  • Author
Just read this today--on subclinical and unusual manifestations--or folks who don't have classic GI syptoms. Open Original Shared Link Villous atrophy is pretty darn specific to Celiac...maybe also with giardia (I think you'd know!) or a cow's milk intolerance (more rare response). Doctors are just now starting to realize that not all *Celiacs* experience the classic symptoms. I would definitely pursue the diet. You said you didn't really have any "symptoms." How did you end up getting tested?

Getting started--one of the biggest helps for me was ingredient lists that helped me identify safe and non-safe ingredients in labels. Ck them out here: https://www.celiac.com/st_main.html?p_catid=12

I got tested because I had severe anemia. The anemia has gotten much better now that I'm taking 1000 mg of iron. It is now normal but before that all happened, my pcp sent me to my GI doc to be scoped and that's when the biopsy came back.

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jenvan Collaborator
jenvan
Posted
I got tested because I had severe anemia. The anemia has gotten much better now that I'm taking 1000 mg of iron. It is now normal but before that all happened, my pcp sent me to my GI doc to be scoped and that's when the biopsy came back.

Anemia is one of the VERY common effects of Celiac. I was in the same situation. Props to your doc for testing you. It took me years of pills before I finally insisted to go to a hematologist, who in turn diagnosed me.

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