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Being Boarderline And Confused!


beksmom

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beksmom Apprentice

My 13 yr old sons doctor told me today that his lab work came back showing celiac "mild" and that he feels he is boarderline ? Should he have the biopsies done? and should I put him the gluten-free diet no matter how those results come out? I am a newly diagnosed celiac with severe damage to my vili. I have had to get six infusions of ferritin to bring level back into a low normal range. My vitamin D is depleated, and am also malnurished. Also dealing with osteopenia. Any direction help for my son would be appreciated.


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mushroom Proficient

My 13 yr old sons doctor told me today that his lab work came back showing celiac "mild" and that he feels he is boarderline ? Should he have the biopsies done? and should I put him the gluten-free diet no matter how those results come out? I am a newly diagnosed celiac with severe damage to my vili. I have had to get six infusions of ferritin to bring level back into a low normal range. My vitamin D is depleated, and am also malnurished. Also dealing with osteopenia. Any direction help for my son would be appreciated.

My husband decided to go gluten free with me because he had a "borderline" response to the celiac test, and some bathroom issues. However, he certainly did not consider himself celiac and was doing it to accommodate me :wub:

When we were back at Tahoe he indulged in some sourdough french bread, and then some beer, and continued to have a beer or two when we got back here. One day he broke out on his forehead with dermatitis herpetiformis (I recognized it immediately from all the pictures I had seen on the forum). I told him to get the area adjacent biopsied immediately but they scheduled an appointment for two weeks later, by which time the lesion was starting to fade because he quit gluten again. So he cancelled the appointment and became a believer. He still has a very wide white scar on his forehead and, vain creature that he is, is convinced that he should not eat gluten.

I do not think there is any such thing as "borderline" or "mild". The analogy we use here is that you cannot be "mildly" pregnant: you either are or you aren't. A little bit pregnant is the same as being a lot pregnant--you are still pregnant!

Consider your son to be celiac. If you want further confirmation you and your son could both do genetic testing through Enterolab or Prometheus (I believe the latter requires your doctor to order it; Enterolab you can do yourself). Either way, I am not sure that most insurances will cover Prometheus; Enterolab you have to pay for yourself, about $450 per person. :o Of course, as you say, he could also have the biopsy, but that is just as likely to be inconclusive as the blood test, unfortunately, especially if they don't take the samples from the right areas.

bluebonnet Explorer

My 13 yr old sons doctor told me today that his lab work came back showing celiac "mild" and that he feels he is boarderline ? Should he have the biopsies done? and should I put him the gluten-free diet no matter how those results come out? I am a newly diagnosed celiac with severe damage to my vili. I have had to get six infusions of ferritin to bring level back into a low normal range. My vitamin D is depleated, and am also malnurished. Also dealing with osteopenia. Any direction help for my son would be appreciated.

"mild" compares to what my doctor said about my bloodwork "at best okay". i didn't do the endoscopy but had enterolabs do genetic and gluten and it came back positive. i see a lot of gi issues in my (short for his age 13 year old) and now knowing i've got the genes, i am having him tested. a postive response to gluten free diet is also confirmation. my doctor was very accepting of my outside labs and doesn't feel the need for the endoscopy if i do not. i mean the "proof" is there. chances are increased if you have it then he will. best wishes! :)

Reba32 Rookie

if Celiac shows up on a blood test, you're Celiac. Doesn't matter if they consider it "mild" or 99% positive. If you continue to consume gluten, then the damage will get worse, and the next blood test will be more definite. Why cause yourself (or your child!) more damage?

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      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
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