Gluten Contamination, Scratching, And Dev. Delay

[elfkin]

Hi! We just got a computer for Christmas and when I found you tonight, I honestly cried in relief. I have felt so ALONE! My two and a half year old was diagnosed with celiac disease at 15 months. He did not grow at all (height, weight, or head circum.) from 9 months to 18 months. He projectile vomited from 12 months to 15 months of age, sometimes 12 times in an hour. He was covered in eczma, itching constantly, up all night crying and thrashing. He was so beautiful and cuddly and so sick! We saw the allergist (he tested positive for peanut allergy - we carry an epi-pen), we never gave him peanuts or peanut butter, so this was no help at all. He saw the endocrinologist and the dermatologist. He saw the GI, who diagnosed him, then we took him to a speciality hospital for a confirmation of the diagnosis. A few months into the gluten-free diet he was putting on weight well, but it only took a few weeks for behaviour and symptoms to improve. He had always had runny diapers, he nursed and I had thought it must be because of that! At any rate, my question now is about his continued scratching and gluten contamination. We wash our hands after eating any and are very careful about utensils and dishes. He sometimes has runny diapers for 24 hours. He still has a lot of itching at times. He puts his hands in his mouth a lot. We don't know if he should go to church nursery ( the kids eat crackers at the table, we could send his snack, but wouldn't the gluten be on their hands, the toys, etc.?). He is just finishing an array of tests the doctor recommended because of speech delay. Does celiac cause developmental delay? We have heard mixed things. We don't know anyone else with celiac disease. He has a lot of apparant allergies as well. We wipe the table carefully in restaurants and take his food with us when we go (it isn't often). Can he be contaminated there? He has been approved for speech therapy with the local early interventionists. Does this really qualify him as "special needs"? What sort of difficulties might result from labeling him so young? He tested 6 months ahead in other areas of the evaluation. I feel a bit adrift with new issues. We seem to have successfully fixed his diet, he has been gluten-free for over a year. Now, I am wondering about whether he is being contaminated and if his condition caused his speech delay. I'd be grateful for any thoughts on this. I can't believe I found this many people who even know what celiac disease is!!!

[Merika]

Hi Elfkin and welcome,

From other posts I've read here, the speech delays could definitely be caused by celiac. Have you had his hearing checked as well? There are other parents here with kids with various developmental delays. Post a specific question for it, or search for it, to get the best responses. I don't personally have experience in that area. I think some (all?) of them catch up, but it may be a year or two. I wouldn't worry about labels at this age.

As for the nursery, my own feeling would be to keep him out of it until his health is better resolved, so you are not wondering about contamination or other unknowns posed by that situation.

Did the doc recommend a casein free or dairy free diet as well? Typically, the gut if it's been really damaged by celiac (and your son sounded very sick) cannot handle dairy for at least 6 months. It is not easy to eliminate dairy (I find it more places than gluten!) but may be well worth it for you.

It is also likely that he may have additional food allergies, either temporarily until his body clears everything up, or permanently. Google "8 common allergens" for more info on the top offenders in an American diet. My son is extremely allergic to soy, and somewhat allergic to eggs. He is also gluten free.

Are there any local support groups in your area? The internet is great at finding those - check here for support groups, also www.celiac.org and other web sites. I am suprised in the past year, how many gluten-free kids I have met - either because they have wheat/etc allergies or aspergers/autism. And I've met other parents of celiacs (i have it too) at celiac support meetings.

Online, you will also find a lot of gluten-free specialty-food-shopping to be done. It's expensive and unnecessary, but can be tasty and a lot of fun

I'd recommend check all of your family's lotion, hair products, lipstick/makeup and anything else that sits on your skin for gluten. Kids rub up against everything and everyone and their hands always end up in their mouths. Luckily, all these items are available from mainstream shops and brands, you just need to read the labels.

Merika

[taweavmo3]

Celiac can most definately cause a speech delay in children. The good news for you is that your son tested above age level in everything else, and he will probably make great strides with the help of speech therapy. I really wouldn't worry about him being labeled at this point.....take any and all help that is offered. Once he catches up, he'll test out of therapy and that will be it. My daughter has a global delay, and we are not sure if it is all caused by celiac. I also had a problem late in my pregnancy with her, and the doc thinks that may be playing a part as well. But I'm sure celiac compounded whatever problems she had previously, b/c her speech regresses terribly with an accidental glutening.

Hope that helps a little. Feel free to ask me anything, I wish I could post more right now but I should be getting ready for work! Take care.

[Smunkeemom]

I think your kid is getting glutened. It's probably not you that is doing it either, but just to be sure triple check everything. He may still have symptoms for a while after you find the gluten source but don't worry things will get better gluten free.

As far as the church nursery, I would talk to the director. Bring articles and studys about how bad gluten is for your child, and talk to her about where gluten is and how to keep your child gluten free. Offer to bring gluten free snacks for the class, make sure they aren't using non-food glutened items (like play dough, or finger paint)

Most of the time the church will bend over backwards to try to accomodate your child when there is a need like this. It has been my experience that the more information they have the better they comply though. Whenever there is a new teacher or nursery volunteer have a short gluten meeting (although the director should do this too) Make your presence known, and let them know that unless the food/craft is on your VERY short list that you have provided, that they need to find you before it gets close to your child.

My list (feel free to copy/paste and change names)

Kathryn and Annika have Celiac disease, it is an intolerance for gluten. Gluten damages their intestines, even a trace amount of gluten can make them sick. Celiac disease is serious, the only way to live a healthy life is for them to be 100% gluten free. Since it is difficult to know what has gluten and what doesn't (there are more than 60 ingredients that can contain gluten) here is a short list of gluten safe things for the girls.

Bananas(fresh)

Apples(fresh)

Grapes (fresh)

Crayola crayons

Elmers Glue

glitter

chalk

I have provided some basic gluten free snacks (like gluten free animal crackers and gluten free juice) please only feed these snacks when the girls are in your class, even a crumb can make them sick, so everyone must be gluten free when around them.

NO play dough, NO finger paints, they contain gluten and touching them (or touching someone who touched them) will make them sick.

If they get exposed to gluten let me know, it's not an emergency, but I do need to know immediately.

[Merika]

Thank you Smunkee for that post! Love the letter.

Merika

[elfkin]

Thank you so much, all of you! We are already seeing improvement! We had a few wooden kitchen items and gluten traps that we didn't realize were a problem. (I feel very stupid for not thinking of it! I had worked hard at taking out things a long time ago!) We have also taken him off of lactose for awhile. He has allergies and we have done a major allergy check of his room and taken a few steps there as well. My husband has stomach issues (was tested, but told he didn't have it). And now, after reading some more of the website, I am wondering about my daughter! She has been having severe leg and arm pains (joint?) and keeps saying her stomach hurts. She has kidney issues and is on medicine for frequent UTI's and the like. Now, I may sound like a very slow learner, but things have been pretty crazy with all of my family on daily medication and chronic issues. She was kept overnight at the hospital the week before Christmas with severe stomach pain. They gave her 2 bags of IV fluids and said she must have a virus. They checked lots of things (kidney and liver first, of course, with her history), but in the end, they really didn't come to a solid conclusion. She had been at a Christmas party with a friend and they called me to come get her because her neck and legs and stomach were hurting. I found out later that she had eaten ALOT of gluten at the party. She threw up once that afternoon, but complained mainly of leg pain. It wasn't until later that evening that her stomach hurt so bad she was bent over and couldn't sit up. After more study, we have decided to try her and my husband on gluten-free and just see what happens. This means that I will be gluten-free as well. I cleared out everything and we have been 100% de-glutened for about 48 hours. I don't know if it is too early to tell, but she hasn't said once today that her legs or stomach hurt. We will see. If this could fix us, I would be elated! We all had the blood test a year ago. My son is the only one with a confirmed diagnosis, but am I crazy to think that this might be the key!?