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I Don't Understand "borderline Celiac"

NCM

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NCM Newbie
NCM
Posted

After being very ill for over 20 years I was tested for Celiac in May and my tTG was 87 (over 20 is positive) and my EMA was positive. I had a biopsy and it showed partial villous atrophy. So I was diagnosed. Once I came back with positive blood work I inisisted on having my children tested. My 5 year old daughter had a tTG of 92 (over 20 is positive) and had a biopsy done which showed inflammation and the pediatric GI specialist diagnosed her based on bloodwork, biopsy, family history and symptoms. (she was tired and would have stomach aches and gas) My 8 year old son had a tTG of 32 (over 20 is positive) and didn't have a lot of symptoms but prior to his biopsy he started complaining a lot that his stomach hurt and has always been rather irritable. His biopsy showed inflammation (like my daughter's) but when we had his follow up appointment with the doctor (who is the head of the GI clinic at a hospital and the same one my daughter saw!) he said my son is "borderline Celiac". He said his bloodwork was considered borderline and because his biopsy showed inflammation and not damage that it was borderline too. I don't understand this and found it really frustrating! He turned to my husband and I and said it was our decision whether to have him go gluten-free. I don't understand why he clearly diagnosed my daughter but not my son! We made the decision to have my son go gluten-free because I'm terrified of him getting as sick as I was but it's bothering me what the doctor said. How can someone be borderline Celiac and how can the bloodwork be borderline if according to the lab report over 20 is positive and he is 32? Not to mention that his bloodwork was done in May and his biopsy was done in September so how do we know that by September his tTG wasn't a lot higher? AND I thought that if a biopsy shows inflammation that it's the beginning stages before atrophy?

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sa1937 Community Regular
sa1937
Posted

After being very ill for over 20 years I was tested for Celiac in May and my tTG was 87 (over 20 is positive) and my EMA was positive. I had a biopsy and it showed partial villous atrophy. So I was diagnosed. Once I came back with positive blood work I inisisted on having my children tested. My 5 year old daughter had a tTG of 92 (over 20 is positive) and had a biopsy done which showed inflammation and the pediatric GI specialist diagnosed her based on bloodwork, biopsy, family history and symptoms. (she was tired and would have stomach aches and gas) My 8 year old son had a tTG of 32 (over 20 is positive) and didn't have a lot of symptoms but prior to his biopsy he started complaining a lot that his stomach hurt and has always been rather irritable. His biopsy showed inflammation (like my daughter's) but when we had his follow up appointment with the doctor (who is the head of the GI clinic at a hospital and the same one my daughter saw!) he said my son is "borderline Celiac". He said his bloodwork was considered borderline and because his biopsy showed inflammation and not damage that it was borderline too. I don't understand this and found it really frustrating! He turned to my husband and I and said it was our decision whether to have him go gluten-free. I don't understand why he clearly diagnosed my daughter but not my son! We made the decision to have my son go gluten-free because I'm terrified of him getting as sick as I was but it's bothering me what the doctor said. How can someone be borderline Celiac and how can the bloodwork be borderline if according to the lab report over 20 is positive and he is 32? Not to mention that his bloodwork was done in May and his biopsy was done in September so how do we know that by September his tTG wasn't a lot higher? AND I thought that if a biopsy shows inflammation that it's the beginning stages before atrophy?

I'd say they're both celiac and you're a smart Mom to question the doctor's diagnosis. I never understood the "borderline" either but then I think a lot of doctors are clueless but that's a whole other topic. Are you making your whole house gluten-free? It would certainly make it a lot easier to not worry about cross-contamination.

And welcome to the forum!

NCM Newbie
NCM
Posted
  • Author

I'd say they're both celiac and you're a smart Mom to question the doctor's diagnosis. I never understood the "borderline" either but then I think a lot of doctors are clueless but that's a whole other topic. Are you making your whole house gluten-free? It would certainly make it a lot easier to not worry about cross-contamination.

And welcome to the forum!

I have a VERY supportive husband who insists on the house being gluten free. While everyone has been having their turn at a biopsy we have had it half gluten and half gluten free which has been stressful. Now that it's completely gluten free it's a lot easier. This doctor has really good credentials and is considered very knowledgeable with Celiac Disease. We did get the feeling that he wanted to study my son if he stayed on gluten. We asked him if the inflammation would get better if he stayed on gluten and he said no and I said "but it will get worse right?" and his response was "it wouldn't be wrong to agree with you" WHAT??? I asked him why would we keep him on gluten and he said that some people choose to in these circumstances because the diet is inconvenient if there's only one person in the house on it. Since when is making sure your kid is healthy an inconvenience???? Don't get me wrong the diet can be challenging at times (I've been on it for 3 months now) but I don't want to see him sick!

Jenniferxgfx Contributor
Jenniferxgfx
Posted

That doctors ethics worry me. It sounds like your family may be his guinea pigs.

Borderline celiac is like a little bit pregnant. Not possible.

anna34 Enthusiast
anna34
Posted

Ugh! The whole "borderline" thing irritates me too. My test was borderline and I was told I could try the diet "if I want to" and wasn't given any other direction. Well, within 24 hours on the diet, I got my answer and haven't looked back. I don't understand why they are so hesitant to encourage a trial of the diet. It's like saying "keep doing what you're doing and we'll see if you get sicker/sick enough to test positive". :blink:

nora-n Rookie
nora-n
Posted

In the old days they demanded total villous atrophy, hence this looks borderline to them.

Just google what the well-known finnish celiac researcher M

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      By Scott Adams · Posted

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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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