What Would You Do?

[curlyq]

I really want some opinions here!

My husbands family has a STRONG family history of celiac. His grandmother was diagnosed 8 years ago, his mother diagnosed 10 years ago, and my oldest daughter was diagnosed 9 months ago (blood test had levels >100...we chose not to do the endoscopy and all of her horrible symptoms went away). Because of his family history, we have participated in a celiac study where everyones blood was tested. I just received the results of my other daughters blood, who has NO celiac symptoms, and she tested positive. Here tTG was 28.56 (moderate to strong positive >10) and her EMA was positive (endomysial antibodies detected).

My frustration here is that she has NO symptoms. She is tall for her age, no stomach pain, no strange bowel movements, she is happy, focuses well at school...just picture perfect health. Should I have her blood tested again or is that redundant? We have a high deductible insurance policy and are a one income family, so I want to avoid the costs of an endoscopy if possible, but I still want to do what is best for my daughter. What would you do?

[T.H.]

I'd drop that gluten like a hot rock and thank this study. Although with a history of celiac disease and no symptoms, I personally would skip the endoscopy for one of my kids.

The instances of false negatives are much higher than false positives. Actually, I don't know if I've ever heard of a false positive (they could exist, I've just never come across them). The only thing I've seen is positive blood tests with negative biopsies, so the doctor told the patients it wasn't celiac disease, and then problems started developing down the line and lo and behold, turns out it actually was.

The largest growing population of celiacs are the silent celiacs just like your daughter (from what I understand), the ones with no symptoms. But if she tested positive, that means that there IS damage being done, even if you can't see the outward signs of it yet. Honestly, I'd be happy you found it now rather than later, when permanent damage sets in.

My 12 year old daughter was diagnosed last year: no stomach pain, no bowel issues, very bright but she was starting to have depression issues cropping up. She was diagnosed because I had been and we tested everyone, not because we actually thought she had it, you know?

I likely had this from my teens onward, and wasn't diagnosed until my late thirties. I had no stomach pain or bowel issues either, was a tall, athletic straight A student. Picture perfect health, but it slowly eroded over 2 decades. When I DID start getting sick and getting injured because my muscles and ligaments weren't getting enough nutrients, it was very bad. Basically, it was too late then to fix some of the problems. Because some of the injuries are things you just don't get over, like damage to spinal discs. Some of the illnesses were ones that only afflict those who are immuno-compromised and have left me with permanent problems that can flare up for the rest of my life.

As someone who wishes very, very much that I had been diagnosed as a child - I'd take her off gluten, at the very least.

[ravenwoodglass]

I would take her gluten free immediately. My twin brother was also the picture of health while the antibodies were destroying his liver. Not meaning to scare you but some of the destruction can go undetected for a long time before symptoms come to the forefront. You really don't want to decide that she really should be gluten free after something like autoimmune thyroid disease, lymphoma or fertility issues,for example, rears it's ugly head.

[Roda]

I would go gluten free with her definately. I put my youngest son gluten free based only on a positive ttg only, no biopsy and me having celiac. His results were Tissue Transglutiminase IgA Ab 16 (ref range: Normal < or = 15 u/ml, Positive > 15 u/ml) and two years ago his test was negative with a result of 2. While barely positive we put him gluten free. I can see no other reason for a child to have these antibodies except for celiac.

[Skylark]

My frustration here is that she has NO symptoms. She is tall for her age, no stomach pain, no strange bowel movements, she is happy, focuses well at school...just picture perfect health. Should I have her blood tested again or is that redundant? We have a high deductible insurance policy and are a one income family, so I want to avoid the costs of an endoscopy if possible, but I still want to do what is best for my daughter. What would you do?

Mixups happen. I would have her independently retested to be sure her sample wasn't swapped with someone else. You could order one of the home test kits if the cost is lower than your deductible on blood testing. Open Original Shared Link

If she has celiac bloodwork on retest, I would personally take her gluten-free. Celiac is not only a stomach disease and those autoimmune antibodies can really wreak havoc.

[Jaymie Jaymz]

Mixups happen. I would have her independently retested to be sure her sample wasn't swapped with someone else. You could order one of the home test kits if the cost is lower than your deductible on blood testing. Open Original Shared Link

I wish they'd make that test available in the U.S. already. I'd like to get my two kids tested.

[Skylark]

I wish they'd make that test available in the U.S. already. I'd like to get my two kids tested.

From that site "For US inquiries, please call (416) 704-0573. We'd be happy to speak with you."

[GlutenFreeManna]

I'd take her strictly gluten free for two months and then challenge her with gluten to see what happens. It's possible that her symptoms are just so slight she never complains or it's possible her symptoms just haven't manifested themselves yet. It's also possible that she has no "classical" symptoms but something else that you are not expecting goes away with a gluten free diet. Then if she still has no symptoms with a gluten challenge, let her eat gluten for a few months and retest. If the retest is positive, then she's just one of those silent celiacs.

[sahm-i-am]

I had positive bloodwork and NO typical Celiac symptoms. It was a fluke they found Celiacs. Have her blood retested and go from there.

[FooGirlsMom]

Pretty much "Ditto" with everyone else. Celiac is first and foremost AUTOIMMUNE. The ways it can manifest itself are so varied and can go undetected for years. The problem with being young is that, as it is with so many things in life, you don't have any other comparison. The way life is (even your health) is all you have ever known. It's only by contrast you know something different. Like your daughter, I was the picture of health to all who knew me in my teens. Slim, rosy complexion, energetic, athletic, A student, you get the picture. Once I hit college and the stress, decreased food quality, did I mention stress? lol began, was the first time I noticed any real "symptoms". I thought I was just tired. Then I started to have recurrent flus and colds after college. More tiredness. After our first child it got worse & worse & then during a particularly stressful time period in my mid 20s my hormones went out of control, my health crashed & I put on 40 lbs in about 9 months. I didn't know what happened to me.

Now that I'm 42, and I look back over 20 years of my life & all the health issues I've had & how without knowing I was solving those issues (well at least controlling them) being gluten free through trial & error, I can remember symptoms back when I was a kid. It wasn't until I got sick that I was able to see the beginning signs of Celiac waaaay back when I was little. What did I know? That's how I'd always been and as I said, it didn't hamper my quality of life.

I saw those same symptoms in my daughter (9.5) and put her on the gluten free diet with me when I finally figured out in October what in the world I had. She came to me just the other day and said, "Mom, I can't believe I'm saying this but I really do feel better. I am not as emotional feeling inside (ok she didn't seem that emotional to us) and I feel happier. I also don't feel bloaty and gassy anymore when I eat." These are things we had no idea about. If you had seen our daughter before she was the picture of exuberance, joy & happiness except when she didn't get sleep for some reason.

My point in all this is ...until your daughter goes gluten-free for a time (say 1-3 months) you may not really know what the norm is for her health-wise. She may notice a difference where you don't.

The bottom line is - if she has Celiac Disease - each and every time she consumes gluten it's damaging her body. Someday it will show up - she might have infertility problems, chronic fatigue, arthritis, fibromyalgia, migraines, susceptibility to colds/flus, thyroid problems...just read the list of illnesses it can cause.

Gluten just isn't worth it. If I could turn back the clock and have known to avoid gluten - wow - how different my adult life would have been. This is what we want for our daughter - quality of life.

FooGirlsMom