Follow Up Blood Work - Still Bad :(

[Cam's Mom]

Hi Everyone & Happy Holidays!

I am looking for any feed back since I am just beside myself . . .

my 6 year old daughter has type 1 JD and celiac disease. She has been completely Gluten Free for 7 months (or so we thought). This is all we think about - I have read absolutely everything about celiac disease, I am meticulous about shopping and cooking for her and I cook and bake most of her food from scratch (jewish mother guilt!!). Also, because of her diabetes she is on a very tightly controlled diet/schedule and is watched after 24/7 by lots of adults: teachers, nurses, lunch room people, etc. so I know there is no way she is eating anything we're not giving her.

We just got her TTG back from her 6 mo. follow up and her level is still 71 (her first test was 181). We know that she got glutened sometime around the blood test, either right before or right after because she was terribly sick and broke out in a rash right after. She had gotten into some latex craft gloves and was blowing them up like balloons. We discovered later that hey were powdered with something and Whamo!

Anyway, now I do not know if it was the glutening or some other low level continuous cross contamination. I am just devastated by this and hoping something can make me feel better. We occasionaly go to the salad bar at Whole Foods Market or to a Chinese restaurant that makes her food gluten free but now I am feeling like we need to stop that and be even more careful.

Any thoughts?

Thanks!!

[Ursa Major]

Have you found out and replaced any personal care products she uses that are containing gluten? It could be something with wheat germ oil, barley extract, oat bran........ like bubble bath, toothpaste, shampoo, conditioner, lip balm, lotion etc. Vitamin E can be derived from wheat germ oil. So, a multi-vitamin could contain gluten in the vitamin E. Or lotion containing vitamin E might have gluten. Not to mention the fact that many vitamins have wheat starch as a filler.

Does she have her own toaster? Toasters can't be cleaned well enough to be safe for toasting gluten-free bread. Did you buy her a new colander for her gluten-free pasta? You can't get all the gluten out of a plastic colander after using it for non-gluten-free pasta.

Does she eat any cereal that has malt in it for a sweetener?

Another reason for her tTg still being fairly high could be, that it takes a while for her intestines to heal. The number DID come down a lot. Maybe it will just take more time for them to come down to normal levels.

I hope this helps.

Ursula

[Guhlia]

Ursula pretty much said it all... She has some excellent points. I also wanted to point out that if you're storing her gluten free flours near your wheat flour, they could all be contaminated. Some other things that you may not have thought about: juices/sodas are not always gluten free, Quaker rice cakes are not considered gluten free, and some pre-bagged vegetables possibly have cross contamination issues. Also, do you grill? Some charcoal contains wheat.

[Cam's Mom]

Thanks! This helps since I am sooo picky about all of these things - we only use "California Baby" hygene products on her (gluten-free) and she has her own toaster, colander, cutting board, etc. I no longer own a single grain of wheat flour in the house. She only eats cereal that is labeled "gluten free" I check all vitamins & supplements faithfully, don't buy bagged or frozen veggies and wash all produce thoroughly - I mean I AM NUTS about this stuff.

One culprit however could be the vit. e oil we use on her chapped nose when she has a cold, but this is a rare occurance. I will check it out.

So, now I feel like it must be mainly from those darn gloves - THANKS!!

[Cam's Mom]

Ursa - Thanks so much for the comment about vit. E. Just for other's reference, I just checked with Solgar who makes Kangavites (kids multi) and their vit. E is soy derived. I also checked Natures Gate Vit. E oil (lotion) and it is indeed wheat germ based (that went right into the garbage can!!). And, California Baby Calendula Cream which contains vit. e is coconut based.

Thanks again for the tip - who would have known? Any other sneaky derivatives you can think of?

Vitamin E can be derived from wheat germ oil. So, a multi-vitamin could contain gluten in the vitamin E. Or lotion containing vitamin E might have gluten.

[FinsUp]

Wow! We are in almost the exact same boat! Our son (he's 5) started his gluten-free diet in May. His pre-diet bloodwork (ttg) was reported as >100. He had his follow up bloodwork on November 1, and it was also reported as >100. There is a strong probability that he was glutened on Oct. 2; although, we never traced the source. Now we, too, are trying to find all the super-hidden sources of gluten that he may be exposed too. We've taken care of the things that Ursula mentioned plus many others. I feel that his glutening affected his results. Hopefully, things will look better at his next checkup. On the other hand, he has grown a full 2" in his first six months gluten-free, so we must be doing something right!

[Nancym]

I'm thinking maybe the restaurnat dining. Especially at a chinese restaurant, they put wheat (soy sauce) on everything. And then salads... if someone uses the wrong set of tongs or gets careless with crumbs.

I wish you luck! You sound like a good Mom, you'll get to the bottom of this.

[happygirl]

I also would think twice about eating out. It sounds like your daughter is extremely sensitive...I am like that, too

The only times I get glutened are when I eat out....even at gluten-free restaurants, and places where we know the staff and manager, have talked to them, etc. It is usually through cross contamination, because I always double check the ingredients. It can be such a small amount, unfortunately. I very very very rarely eat out because of this.

[Juliet]

Our son was seemingly gluten free for about 3 months, but I still noticed that he was occasionally still acting like he was getting gluten somewhere. I finally narrowed it down to the toothpaste he was using - it was Oral B toddler toothpaste which they say they cannot guarantee is gluten free. I switched to Colgate toddler toothpaste and all of his problems have gone away. And he is pretty sensitive, too, so we rarely go out to eat somewhere where the restaurant actually prepares his food except for P.F. Chang's and Red Rock Chili at the mall (the basic recipe is gluten free). Everywhere else, no matter how well we've explained the problems, has gotten him sick.

[dionnek]

I am the same way - I've been very dilligent since dx 7 months ago, however, at my 6 month biopsy checkup my villi were still flattened and I hadn't started feeling ANY better. over the past 2-3 weeks though, I've noticed my D has gone from 7-10 times per day to just 2-3, and I don't have the muscle cramps and night sweats any more, however, I am now 12 weeks pregnant and have a goiter, so who knows what is causing my symptoms?! Anyway, I would definitely give up salad bars - it is just too risky with shared tongs and people dropping croutons into everything, etc. I haven't tried chinese restaurants other than PF Changs b/c of the risk.