Question

[mamaathome]

Hello Everyone! I'm so glad to have found this board! My dd was diagnosed with Celiac in early December and has been gluten free since the day of her biopsy. Within a week we started noticing a difference in her behavior, and as the weeks passed she kept improving...it was like she was a totally different child! All of her symptoms went away and things seemed to be going fine. Then 3 weeks ago she vomitted (her main symptom), and now this week she has been avoiding food, vomitting, very cranky, and having very loose stools. We are VERY careful, and I don't think she has had any gluten. So my question for those of you who have been dealing with this for awhile, is is it normal for relapses like this in the first few months to year, even after symptoms have gone away? I'm frustrated because I don't know if she is really just sick, like the flu, or if it is her celiac acting up. Also, she deals with acid reflux, so that is another possibility. We have an appt. with our pedi gi on Monday, but thought maybe there might be some insight here before then. I'd appreciate ANY feedback! Thanks so much.

[angel-jd1]

It takes quite a while to heal, and even longer to "get the hang of" the diet. If you would like feel free to post what your daughter has been eating and the folks here can look for hidden gluten. It is easily missed. Include brand names of items, medicines, vitamins, toothpastes, anything that goes into her mouth. Sometimes it is something simple that has slipped through the cracks.

-Jessica

[mamaathome]

Jessica,

Thanks so much for your reply. Here is a list of all I could think of that dd eats/uses.

Bob's Red Mill Pancakes

Ener G Gluten Free Pretzels

Kinni Kwik Bread

HyVee Instant Rice

Ragu Spagetti Sauce

Various Brands of Gluten Free Noodles (some corn, some rice)

Sun Maid Raisins

HyVee Sliced Cheese

HyVee Large Curd Cottage Cheese

Classico Alfredo Sauce

HyVee Frozen Vegetables

Yoplait Yumsters yogurt

Land of lakes Butter

Carl Budding Deli Meat

Enfamil Poly Vi Sol Multi-vits

Baked Potatoes

Orajel Toddler Training Toothpaste (this may be our culprit)

Also, after reading some other posts, I've thought of things that I hadn't before like having separate dishes. We have changed dishsoap, but not gotten new dishes yet.

Also do all of you use special laundry detergent, cosmetics, etc...? So far we have only worried about what goes into her mouth, but if these things are also important we will switch!

[snoopylian]

My son is three and his behavior is dramatically different too. It's like Dr. Jeckle and Mr. Hyde (sp?). Pretty amazing.

Anyway, anything she comes in contact with, if it has gluten, can cause her problems. I was at his "school" once and saw cracker crumbs left on the table, floor and chairs. My husband has eaten bread in the living room and left crumbs on his chair and my son likes to sit in that chair. Since my son is 3 1/2 that's a problem. I've found gluten in shampoos, conditioners, hand soap, playdough, markers, juice, rice milk and the list goes on. I even made the mistake of giving him spelt pretzels -- because the ingredients didn't list wheat, rye, barley or oats, just spelt, and some soy and salt. Dummy (me not you) spelt IS wheat. So now, I find myself almost paranoid. It is verrrrrry difficult at first. Even "seasoned" celiacs and/or celiac parents slip up sometimes. A friend's celiac daughter had children at school who thought it was funny shove their sandwiches in her face. If she's kissing on your face you may want to consider gluten-free makeup. Lame Advertisement and Mary Kay are two that I know of (I'm partial to Lame Advertisement and I can tell you how you can get %35 to %50 off of everything). Keep your chin up. ;o)

[Guest nini]

it could also be things like play dough, if she puts her fingers in her mouth after playing with play dough or other non gluten-free art supplies like finger paints or pastes...

medicines are another culprit. Most of the name brand childrens medicines are gluten-free, but some store brands and generics OTC are not gluten-free. Some childrens vitamins are not gluten-free. I actually found a childrens chewable vitamin at Dollar Tree (of all places) that is gluten-free, it's a pretty regular item that Dollar Tree carries.

my daughter was dx when she was 3 also. The behavior change in her was amazing. Nothing short of miraculous. She had terrible uncontrollable fits, way worse than temper tantrums.

[Guest nini]

oh and I have had problems with Bob's Red Mill products with cross contamination. They produce many gluten containing products in their facility even though it's in a different part of the facility it still gets in the air.

[snoopylian]

...and I read several places that vitamin E can sometimes contain gluten.

[Guest ajlauer]

Nothing certain, but some potentials on the foods:

When I checked "regular" spaghetti sauces, I didn't see *any* that were gluten free. We've switched to pizza sauce.

Carl Buddig meats contain MSG. Since the "G" is glutamate... I'm thinking that could be a cousin of gluten. Someone else could probably address that with a little more knowledge.

Isn't Yumsters yogurt thickened with something?? I bought it once, before going gluten-aware.

Those were the items that kinda stood out to me, but I'm definately not the most knowledgable - or experienced - on these boards.

[CMWeaver]

I called Yoplait about two weeks ago and they confirmed that all of their refrigerated yogurts (hmmm.....I don't know any that aren't) are gluten-free.

I had to confirm since I also called Dannon and most of theirs isn't.

With regards to healing, I just called our daughter's GI yesterday and asked for the specific wording of the pathology report. She had total and complete villi destruction. Since there are a few stages of partial destruction, I called because I too was wondering about relapses. After hearing how sick she became from celiac prior to going gluten-free, I'm trying to understand that the 4 months we've been gluten-free isn't enough for her to be "healed" at this time. We've gained weight but height isn't here. They told me yesterday that it will most likely take her several months for the villi to repair itself.

[mamaathome]

Wow! Thanks for all of your insight. I took Isabella in to have her bloodwork tested again today to see what her numbers are doing. After reading all of your posts I'm a bit overwhelmed, but at least can now see where some hidden gluten may be coming from...how about all those stickers they give her every time she sees a doctor! I guess we are just going to have start from scratch again, and look into everything including personal products, and not just food. As for the food...I only buy her "regular" brand food if it is listed in our Gluten-Free guide, which is from 2004 from the University of Iowa. The Ragu, Classico, Yoplait, and Carl Budding foods are all listed as safe, but one post said they are not. I personally contacted Yoplait, and that is safe, but the others I have relied on the guide...I guess I'm feeling a bit overwhelmed if this guide, which has been a lifesaver to us, is not accurate. It's just so heartbreaking to see her little tummy getting bigger again, and not knowing for sure which product (s) are causing it. Thanks again everyone!

[Guest ajlauer]

Alright, now I'm confused! I had gotten the impression from these boards that gelatin was a "no-no". We actually did have some Yumsters yogurt (made by yoplait) in the fridge. I checked the ingredients, and it lists gelatin. I was all ready to make a post about it - when I see that yoplait says everything is safe? So what's up with gelatin? To gel or not to gel, that is the question! Are we gellin like a felon from magellan? Am I a dork? Yes I am, thank you very much.

Seriously, is gelatin okay or not? Thanks!

[angel-jd1]

Kraft Jell-O is fine. Many Jello's are fine. Just have to call and "check". The story of our lives, always call and check

-Jessica

[lovegrov]

Gelatin is gluten-free. Glutamate had no relartion to gluten whatsoever and is gluten-free. ALL Carl Buddig meats are gluten-free, and in fact the VAST majority of deli meats are gluten-free (but check before eating). Virtually every commercial spaghetti sauce out there is gluten-free so there's no need to use pizza sauce instead. Some companies like Kraft clearly list an gluten, but all you have to do on others is call the company and ask (some even have gluten-free lists online). There's generally no need to guess and no need to avoid foods that don't actually have gluten.

richard

[Guest ajlauer]

Thanks Richard! I'm excited to go grocery shopping again. *laugh* I'm curious to see what it was in spaghetti sauce that made me avoid it. Could have been something else that my daughter is allergic to, not gluten. Guess I got it all confused! It's so hard to keep up with everything!!

[SharonF]

I remember seeing someone on here who had a reaction to Progresso tomato sauce.

I always use Ragu, which is gluten-free, and mighty tasty (in my opinion).

[Guest ajlauer]

Corn syrup was the culprit for us. That's why I had to go to pizza sauce instead of spaghetti. Just wanted to clarify!!