Jump to content

  • 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

By Brook-lyn
in Super Sensitive People

 Share

Recommended Posts

Brook-lyn Newbie
Brook-lyn
Posted

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
trents
Posted

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

Brook-lyn Newbie
Brook-lyn
Posted
  • Author

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
trents
Posted

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
Scott Adams
Posted

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
knitty kitty
Posted

@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
Brook-lyn
Posted
  • Author
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
knitty kitty
Posted

@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
LCAnacortes
Posted

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
cali5960
Posted

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
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748
    mike101020
    Newest Member
    mike101020
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.