Diagnosing 13 Year Old Daughter

[Nanceliac]

I'm new here, but have been reading for awhile.

I think my 13 year old daughter may be Celiac. She has always been way behind on the growth curve for both height and weight (I was too). She'll be 14 in June and there's no sign of puberty starting (I was 15 when I started). She has stomach upset frequently, itchy rashes on her belly that come and go, her hair is getting thin, and she says she gets diarrhea every few weeks. The doctor said the rash was a contact allergy to nickel, but it's now on her ribcage where no nickel came in contact.

I had a doctor run a blood test for Celiac. The Ttg was 90, and the range was positive for anything 90 or above. The other one (TTA?) was negative. Based on that, they said she's not celiac. She's been seen by an endocrinologist who tested her for everything else and found nothing. I told this doctor I'd like to try her on a gluten challenge for a couple of weeks. He said not to do that because she's already underweight. Her father (we have 50/50 custody) is very skeptical about Celiac disease, so he won't support me in this.

Autoimmune disease runs in my family and her father's. My mother, sister, and I all have hypothyrodism. I was diagnosed at age 12. My other sister has Lupus. My father has an allergy to wheat. I didn't get myself tested, but I did a gluten challenge last August and found that the gas and bloating I had since puberty went away, and came back without about an hour of eating 1/2 piece of wheat bread (8 weeks later). I've been doing the SCD diet since then (because my husband has ulcerative colitis and I want to help both of us).

Knowing the connection between Celiac and autoimmune diseases, I fear that my daughter will end up with an autoimmune disease. Yet I'm terrified to try the gluten challenge and have her get even more underweight or get sick from lacking nutrients (her ferritin is already low-normal), and then have the doctor and her father point the evil finger at me. Do I wait until she develops an automimmune disease or gets incapacitated before doing the gluten challenge?

My daughter is willing to do a gluten challenge. But unfortunately, she's with me half of the week, and with her dad the other half. He and his wife go out to eat a lot, so it would be near impossible to do a gluten challenge over at their house. But if I did do a gluten challenge, how long do I do it for and what do I look for? Any other advice would be appreciated.

Thanks,

- Nancy

[Generic]

I was diagnosed at age 13. (been 21 years now). I was a late bloomer as well as I was super skinny, to say the least. If your daughter is willing to do a gluten challenge she is old enough to "choose" for herself. Her dad should be supportive of what she wants to do. She needs to stand up for herself and say HEY! I'm tired of being sick and I want to try this! I find dietery responce is the best answer. I really don't think elimininating gluten from her diet is going to cause any malnutrition issues.

[Nanceliac]

Thanks for the response. Do you think 2 weeks is enough time of being off gluten to notice a difference?

[Darn210]

Who did the initial blood test? Was it a primary care physician? or a GI?

Being underweight is not a reason to NOT go gluten free . . . there are plenty of high calorie foods that are gluten free to help her put on weight if she needs to. Taking gluten out of her diet will not mean she will lose weight.

The part of the post that concerns me is not getting the buy-in from her dad. If she hasn't seen a GI yet, I think I would try and see one before she tries a gluten free trial. If there is additional testing to be done, she needs to still be consuming gluten. I know that my daughter's GI wouldn't have taken a borderline reading as a negative for Celiac. I would persue a second opinion (from a GI) on her blood test. If that doesn't work out, then I would try the gluten free diet. Also, even if your 2nd opinion doc is still doubtful, I would try and work with whomever seems most agreeable. Tell them that with the family history, her symptoms and her borderline blood test that you (with daughter's agreement) would like to try a gluten free diet to see if there are any improvements. Then, after your trial diet, you've got more evidence to prove your case for Celiac (or gluten intolerance) and get a diagnosis on your side. I'm just thinking if you've got the backing of a doc, you'll have more leverege with her dad.

Two weeks is not very long. She may be able to tell the difference immediately . . . but it may take considerably longer. I would probably shoot for at least two months. We put my son on a trial diet or 6 months (per GI's recommendation). I knew after two months it wasn't making any difference (we were looking for growth) but we stuck it out for the whole 6 months.

[Nanceliac]

After I posted to the group yesterday, I sent an email to her dad, asking again to try a gluten free trial. He has agreed, thankfully. I think that since I finally got his buy-off, I will have my daughter try it for the 2 week period. If we don't see any results (like the rash going away), then I will take your advice and send her to a GI specialist.

[ang1e0251]

My rash took much longer than 2 weeks to heal but I did feel and improvement in the color and pain and itchiness in that time. The trial is a good idea since her father agrees. She will have to be eating gluten for the GI test thought as previously stated. Make sure she sees a pediatric GI as they will understand the problems in blood tests for younger patients.

[Rebecca's mom]

Your daughter's tTG was 90? I don't know what your lab's "scale" is, but the one that we had run listed anything above 3 as being positive! Regardless of if her IgA came back positive or negative, the tTG number is indicative of intestinal damage. I would INSIST on an intestinal biopsy from her pediatrician. If your daughter has intestinal damage, she will have to be on a gluten-free diet for the rest of her life.

As the parent of a 22-year-old daughter, and 2 teenaged daughters currently living at home, I can tell you that in some cases the ONLY way that you will be able to "back up" your insistence for adherence to a gluten-free diet is if you have an "official" piece of paper / medical picture that confirms it! We have told our daughters that when we go out to eat, they can only order from the gluten-free menu, as both of them had positive stool results from Enterolab (negative bloodwork, though). Actually, daughter #3 voluntarily went gluten-free when she saw how much weight I was losing!

Interestingly, our YOUNGEST daughter was the 1st one diagnosed with celiac disease - she has Down syndrome, and a Celiac Screen is one of the tests that is recommended for them, due to the high incidence of celiac disease in the DS population. She had NO symptoms whatsoever, so we probably wouldn't have known about her having celiac disease if not for the screen!

Teresa Koch

Fort Worth, Texas

[climbmtwhitney]

Nancy,

If 90 & above is positive and she had 90, then I would say she is Celiac. Many doctors diagnose based on blood alone without a biopsy. However, if you're going to run into resistance with your ex, then I would definitely get the biopsy. Please know though that she has to be eating gluten to have any chance of accurate results. Also, even if the results are negative, she is probably still Celiac since biopsies are notorious for false-negatives.

Sounds like your ex is cooperating for now. But, a permanent gluten-free lifestyle is a big commitment so don't assume he'll cooperate later. Get all the proof you can before she goes gluten-free. Assuming she responds miraculously to the diet, then she (and you) won't want to put her back on gluten for a biopsy. That's the best part.....seeing your little one happy and feeling great! It's so worth it!

As for worrying about losing weight.....my daughter finally GAINED weight. She went from 55 pounds (10 yrs old) to about 63--perfect for her. Going gluten-free (and casein free, soy free too) increased her appetite. She used to eat like a bird not only because she wasn't hungry, but because her tummy always hurt. There are plenty of yummy things you can make (and freeze) to help put some weight on her. I'd be happy to tell you our favorite mixes if you want, just email me at taffehome@comcast.net.

Also, FYI, I had several doctors tell us that one of the biggest signs of Celiac in children is poor growth. My daughter, too, is such a little peanut. Her sister, who's 2 years younger, is almost 2 inches taller than her. My dd always gets to be #1 on the softball team since the coaches always line them up by height--smallest to tallest--when doing the jerseys. At least she's got a great sense of humor about it. BTW I'm 5'10 and my husband is 6'3" so there's definitely height in her genes. She's been GFCFSF for 7 months and we're still waiting for her to have the promised big growth spurt. She did grow 1/4" recently, so we're thrilled about that!

Best of luck to you both,

Jillian