Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Daughter seems to get sick even from touching gluten


Brook-lyn

Recommended Posts

Brook-lyn Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



trents Grand Master

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

Brook-lyn Newbie

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 Grand Master

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 Grand Master

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 Grand Master

@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 Newbie
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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@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 Enthusiast

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 Newbie

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!!!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,911
    • Most Online (within 30 mins)
      7,748

    Deborah anne
    Newest Member
    Deborah anne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jack Common
      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
×
×
  • Create New...