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

Help With Daughter Who's Regressing On Diet.


paula

Recommended Posts

paula Newbie

I am looking for any advice you may be able to provide. My daughter has been gluten-free since April 2004. She had been looking so good, no enlarged tummy, great color, no black circles under her eyes, loads of energy etc. Thursday evening my husband and I took her to swimming lessons and when she stood next to the other kids I almost died. Her tummy is back, not to mention that all of a sudden she is very pale and today she even has black circles re appearing under her eyes. I know that the tummy was gone in August when she last wore this swimsuit and being that this is the 1st time she had put it on I was horrified. Her color has been nice and pink all along it really was only in the last 2 weeks that I noticed that it was not as "healthy." She weighed 31 and a half lbs last December (at 4 yrs old) went on the gluten-free diet and weighs 38 and a half lbs this am.

I am not sure what this means. I had called her GI and we go on Tuesday. Could this be refractory celiac disease? I was told that with refractory you do not improve and then get sick again.

I also was in her classroom yesterday and spoke with the teacher. Her french class has play doh in it. It is the home made variety with reg flour. Can this be absorbed through the skin? The teacher also mentioned that she is more tired and less interested this week.

I make all her own bread, muffins etc. The only couple of things I thought of I called on. One being those listerene pocket pack breath strips. THey couldn't tell me. The other being a pizza sauce and its fine.

Thanks in advance for any in sight you may provide.

Paula


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



Celiac.com Sponsor (A8-M):



plantime Contributor

I would look hard at the play doh. As far as I know, gluten cannot be absorbed through the skin, so she must be getting some of it in her mouth. It could be that the play doh is sticking to surfaces, then getting on her hands after washing, and contaminating her food. I would take away the play doh and see if she improves.

flagbabyds Collaborator

Most kids put their hands in their mouths so she could be doing that after she plays with the play-doh

celiac3270 Collaborator

Don't think it's refractory--first, refractory is very rare, and second, you said that she had been getting much better. With refractory, the symptoms come, stay, and don't get any better even if you're 100% gluten-free.

Play Dough is very likely the culprit. It definitely contains gluten, and she probably touched it and then touched food or put her hands in her mouth or something. Besides, four-year-olds don't really wash their hands as often, so it may have stayed on her hands for awhile or through numerous meals.

-celiac3270

angel-jd1 Community Regular

Play Dough would be highly likely to get under finger nails also. Most 4 year olds are into gross things such as nose picking and the finger that has the playdough and whatever else goes into their mouth!! I know gross, but easily explains contamination. There are several recipes out there for gluten-free playdough. Just make your own to be safe and healthy.

-Jessica :rolleyes:

Ruth Enthusiast

It's so hard with the little one, not knowing exactly what is causing the issue. I know the listerine pocket packs made me feel sick. I never received an answer either, but avoid them now.

Be sure she is not "sharing" food at school. Or having others share her food. Putting their "gluten-covered" hands into her snacks!

Have you checked vitamins, medicines, creams & lotions, chap stick?

Is she licking stickers at school? Sometimes these have gluten in the glue.

Last year I made the mistake of giving my daughter yogurt that I thought was gluten-free... it wasn't. It took a week to figure it out. But she was back on track once we cut it out.

Good luck. Let us know what you find out.

ashlee's mom Rookie

I can relate, but I really agree with everyone here that it is probably that she is still getting gluten somewhere. My daughter has been gluten-free since last March, and just turned 5 in August, so they are close in age and time gluten-free. All they symptoms went away at first, then over the past 6 months or so I think she is getting more sensitive. I finally realized we had to switch to Stainless steel pans (tossed the old Teflon!) And over time we really noticed a difference. She had no problems for over a month, and the other night I noticed a slightly swollen belly, and yesterday she had diarrhea. So here we go again! I would start by cutting out the playdough. I don't let Ashlee use anything on her skin that has gluten, just for that reason that somehow something could end up in her mouth. (Including bath products if you haven't checked that). I don't know how much it helps, but as a "band-aid" kind of fix, I have been upping her amount of Pediasure when I think she is somehow getting gluten. It makes me feel better to know she is getting more gluten free nutrition and that maybe that helps her body heal while I figure out what is wrong! Good luck! And keep us posted!

Michelle


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



Celiac.com Sponsor (A8-M):



Boojca Apprentice

I have to agree with everyone here...I think it's the playdoh. Or at least that's a start. Argh. What are they doing with Playdoh in French class?? Weird... Anyway, she's probably getting it even if she isn't using teh playdoh, just from the residue on the desk tops. Does she share drinks with friends? Chew pens or pencils? Use lotion? Eat her lunch where someone else has already eaten, thereby getting their gluten crumbs?

All things to think about that we never gave a second thought during our "pre-Celiac" days. My son is 3 and I know where you are coming from, it's so hard!!!

Bridget

Archived

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

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.