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 Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    5. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,362
    • Most Online (within 30 mins)
      7,748

    DPC
    Newest Member
    DPC
    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

    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
×
×
  • 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.