Daughter seems to get sick even from touching gluten

[Brook-lyn]

Hi, 

Earlier this year my 2 year old became very sick. She was throwing up frequently, had no energy, stopped walking and going up the stairs, looked dizzy often, etc. At this point after much research I am convinced that durig the worst of it she had gluten ataxia. She went to several doctors, none of whom could figure out what was wrong. Eventually she was diagnosed at the hopsital with celiac disease. 

Once we completely removed gluten she has been better however we still have problems whenever we go places. I know with 100% certainty that she has not consumed gluten in any way, not even a crumb during any of these situations. 

When we go to family members houses she gets tummy aches and will even throw up afterwards. This has even happened when no one in the house has eaten the entire time we have been there. We always give warnings about not using flour for 24 hours before she comes for a visit and as far as we know our family members have not. 

I know that my 2 year old is not having a psychological reaction. Children of this age would not even have the awareness to be able to think something like that. She's just having fun and then has a reaction. 

It bothers me that so many people say that celiacs must eat gluten to have a reaction. It does not make sense in my experience and I have read of others who have the same problem. I wish people would stop dismissing this and actually research it further. 

I want my child to be able to go to family members houses and not have a reaction. Everyone is always very careful when we are there and she still has reactions. What could be happening? Does anyone have advice?

[trents]

Could her reactions be caused by something else in the environment besides gluten?

[Brook-lyn]

I dont think so. I suppose it is possible but we eat everything else that has a high possibility of allergen in our own home and she is always fine here. It has happened at different people's houses as well, some of which have animals, some of which do not. And sometimes she has a reaction when no one has even eaten or had any food out around her so I'm not sure what it could be. 

[trents]

By the way, welcome to the forum, Brook-lyn!

Is it possible your daughter is having a delayed reaction to some food allergen? Allergen reactions can occur 24 hr. or even longer after exposure. I might also suggest you keep a food diary for her to track that kind of thing.

[Scott Adams]

Welcome to the forum!

Is there any chance some family member could be giving her food, candy, etc, which might contain gluten? We've seen this here before, a family member that feels sorry for a kid, or just doesn't believe or know that a child can't eat any gluten, and gives them some special "treat." I am just trying to thing of all possibilities.

[knitty kitty]

@Brook-lyn, Welcome to the forum!

Do any of these homes visited use automatic scent dispensers?  

I have gotten sick from plug in air fresheners, heavy perfumes, some deodorants, scented candles, etc.  It has to do with a  hypersensitivity to Sulfites which are used in perfumes and scents, and some medications.  

Some Celiacs develop this hypersensitivity to sulfur compounds due to being low in molybdenum, a trace mineral.  Beef liver is a good food source for molybdenum and other vitamins and minerals as well.

Playdough is made with wheat, so be careful with that, too.

Best wishes.

[Brook-lyn]

2 hours ago, Scott Adams said:

Welcome to the forum!

Is there any chance some family member could be giving her food, candy, etc, which might contain gluten? We've seen this here before, a family member that feels sorry for a kid, or just doesn't believe or know that a child can't eat any gluten, and gives them some special "treat." I am just trying to thing of all possibilities.

Thanks for the suggestion. I don't think anyone has. I have always been in the same room the entire time because of how little she is. She never visits family by herself yet. 

12 minutes ago, knitty kitty said:

@Brook-lyn, Welcome to the forum!

Do any of these homes visited use automatic scent dispensers?  

I have gotten sick from plug in air fresheners, heavy perfumes, some deodorants, scented candles, etc.  It has to do with a  hypersensitivity to Sulfites which are used in perfumes and scents, and some medications.  

Some Celiacs develop this hypersensitivity to sulfur compounds due to being low in molybdenum, a trace mineral.  Beef liver is a good food source for molybdenum and other vitamins and minerals as well.

Playdough is made with wheat, so be careful with that, too.

Best wishes.

Thanks! This could definitely be a possibility. I will look into this further. 

[knitty kitty]

@Brook-lyn,

I decided to use unscented laundry detergent, no dryer sheets or fabric softeners that leave scents on clothes, no perfumed body washes or hand soap.  

I used to get so sick to my stomach (and a migraine) walking by the perfume and cosmetics counters in stores.  Some people's homes I've visited have been intolerable because the air "fresheners" were so strong.

If it happens again, get your daughter outside in fresh air and see if her symptoms improve.  

Best wishes!

[LCAnacortes]

I have a sensitivity to fragrances too - so buy unscented products. I had to run through the cosmetic section at a department store.  I have been that way since I was little. My daughter and I were passing through Nordstrom and they had a wedding exhibit going on and when we passed by the perfume I waved them away because I am allergic.  They told me that it didn't contain sulfites like most perfumes do, so I might be able to handle it.  I took a whiff and it was okay.  My aunt was hyper allergic and she is in the same vein of the family where celiac came from - so seems like it might be a common thing. I have not been diagnosed yet but it is in the DNA of close family members.  I don't want to eat gluten to blood test so I'll do the DNA test for it. Meanwhile I have been gluten free since May. Dairy may be becoming an issue so be aware of that too. 

[cali5960]

Hello!

my daughter was diagnosed 7 years ago when she was only 8 years old and she is very sensitive to gluten. You may not know this but it takes time for the intestines to heal which for us was around a year and a half. We also had to change any thing that came into contact with her skin or in the air (like hairspray, deodorant and even candles). We changed all of our cooking pots and pans (so there could be cross contamination there as well).  Good luck!!!