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

What Non-food Things Do I Have To Be Careful Of?

3groovygirls

Recommended Posts

3groovygirls Contributor
3groovygirls
Posted

It's official that Violet has Celiacs. I don't know if you all remember me, she's the baby that's now 20 months old but had failure to thrive and has reacted so violently to gluten she got immediate vomiting and diarrhea. So we saw a GI Dr. and he said it would be too bad to put her on gluten just to get the biopsy and blood test, due to her failure to thrive. So he did the genetic test and said if she had that she most likely had it. That in cases like hers they DO use the gene test. So she tested positive for the HLA-DQ2 gene.

My question is, what things *other* than food should I be careful of. For instance Play-doh. We do it nearly every day! This has four in it. She doesn't eat it but she plays with it. Is this ok or is it it bad for her? Do lotions have it? What about sunlotions? I know California baby says it's "gluten free" so I tried to use it last summer but it gave her hives, so I switched to Baby Blue Lizard. Gluten isn't listed as an ingredient but it doesn't say "gluten free".

I'm new to this so I don't get - can lotions and soaps that have gluten REALLY go through your skin and hurt her??

What about when her sisters eat and if she gets even a few leftover crumbs off the floor of something - will that hurt her? (Meaning if it's not enough to give her diarrhea?)

Anything else I should know or be cautious of with a toddler new to Celiacs? Something that I wouldnt' even think of?

Linda

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

Celiac.com Sponsor (A8-M):


Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Congratulations on Violet's diagnosis. I know that is a strange thing to congratulate someone on but I think you are lucky! You have the key to your daughter's health! Many, many people aren't as fortunate.

As for things to be aware of.... We are a gluten free home. It just makes things much easier. You won't have to worry about crumbs, contaminated pots and pans, and things like that. The reason why Play-Doh is a no no is because it can get under the nails and if hands aren't washed properly, the Play-Doh can be ingested. That is true for soaps and lotions too. The gluten molecule can not go through skin but the problem arises when it gets into open sores, eyes, mouth, etc. If she has Celiac then, yes, even a crumb of gluten can hurt her. Like I said, it's so much easier to have a gluten free home. Good luck!

dandelionmom Enthusiast
dandelionmom
Posted

There are some gluten-free play dohs. We usually just use Moon Sand though, it is more fun!

The lotions don't go through the skin, the concern is that they'll put their hands in their mouths and ingest it that way. It is up to you how careful you want to be. We keep all our lotions, soaps, shampoos, etc gluten-free because we're trying to minimize risk as much as we can.

My daughter is extremely sensitive to gluten (a few crumbs are enough to make her sick for a week) so we keep it out of the house for the most part.

3groovygirls Contributor
3groovygirls
Posted
  • Author

Thanks guys! I see what your saying about congrats - after reading many posts on here it seems that Violet is in the minority having such clear concise results! You are right to be thankful for that.

Not to be totally clueless but how do you KNOW if a lotion doesn't have gluten in it? Or shampoo, etc? I guess what I'm asking is what is the chemical name I'm looking for, KWIM? Or a master list of gluten free products? Sorry, I'm so clueless!

Also do you all also have other kids at home? How do they react to having to be gluten free? I am willing to bet there is no way my DH would go gluten free. EVER. He's too into food. I mean, my 2 older kid ALL their snacks and food have gluten, if I just took them away, wow, they'd go into shock! They're so darn picky I think they'd eat nothing....

I really honestly think my 3 year old (well she's 4 next week) has it as well. She's 4, only 27lbs. They thought she had it back at 1.5 years old but only ran the IgA tests, which were negative (as they often are in babies right?)no gene test. Now she's still not on the growth chart, barely has hair, etc....

I suppose I should get tested too. Can I ask something really random (and I hope this doesn't sound bad) if I do have Celiacs and I go off gluten will I gain weight? My entire adult life, other than being pg, I've been 5'9" tall and no more than 115lbs. I always thought it was the genes - ROFL - yeah probably the Celiacs gene! So will going off gluten make me gain weight? (Not that I won't do whats healthy, this is entirely a vanity question....)

dandelionmom Enthusiast
dandelionmom
Posted
Not to be totally clueless but how do you KNOW if a lotion doesn't have gluten in it? Or shampoo, etc? I guess what I'm asking is what is the chemical name I'm looking for, KWIM? Or a master list of gluten free products? Sorry, I'm so clueless!

I just called the companies on the products we used. We had to stop using Aveeno products.

Also do you all also have other kids at home? How do they react to having to be gluten free? I am willing to bet there is no way my DH would go gluten free. EVER. He's too into food. I mean, my 2 older kid ALL their snacks and food have gluten, if I just took them away, wow, they'd go into shock! They're so darn picky I think they'd eat nothing....

I have three children, one with celiac, one we suspect (too young for accurate testing), and one that doesn't have it. The one who doesn't have it eats gluten at school but gluten-free at home. She's okay with it. We talked about it when we first go the diagnosis and promised her we'd keep things like chips, popcorn, cheese sticks, and gluten-free cookies on hand. She wants her sister to be healthy too. I bet your DH will feel the same way. My H eats gluten at work and when out with friends then we limit the at home snacks to gluten-free ones.

I suppose I should get tested too. Can I ask something really random (and I hope this doesn't sound bad) if I do have Celiacs and I go off gluten will I gain weight? My entire adult life, other than being pg, I've been 5'9" tall and no more than 115lbs. I always thought it was the genes - ROFL - yeah probably the Celiacs gene! So will going off gluten make me gain weight? (Not that I won't do whats healthy, this is entirely a vanity question....)

You should all be tested. I found out I had celiac disease after my daughter was diagnosed. I feel better than I ever have so I (usually) see it as a blessing. I have gained weight but I probably would have done that anyway! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.