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

Great Doctor Visit Today! And A Question


e&j0304

Recommended Posts

e&j0304 Enthusiast

Well, we met with our new family doctor today (we switched the kids from their former pediatrician after all we've been through with Ella) and we LOVED her. Not only was she very nice and personable, she seemed knowledgable about celiac disease. She actually has an aunt who has celiac disease, although all of her blood tests were negative. She just tried the diet and had great results. Her symptoms were actually similar to Ella's. She said that blood tests for celiac disease are not always that reliable, espcially in young children. She did think that we were doing the right thing for Ella by keeping her gluten-free. I don't think we'll have any problem getting a dr's note for school stating she is gluten intolerent.

I brought in pictures of Ella were you can see her tummy both before and after going on the gluten-free diet and the changes are so dramatic. She was amazed at the difference in only 3 weeks. She also said that it may take awhile before we see less of her hair falling out. It's really disturbing to me to see her hair falling out like this, but I hope that it will end soon.

She actually called me 1/2 hour after I left the office with the name of another mother with a child with celiac disease. She apparently called this woman and asked her if she would be willing to talk with me and give me advice if I wanted to call her. Apparently she is active in a celiac disease support group and goes to conferences or something. I thought it was nice that she took the time to contact this woman right away.

I was very impressed with this woman and the nurse. They were all so nice and seemed as though they were on our side, which it didn't seem like anyone else was. I honestly don't know if I could have taken another disappointment from a dr. I feel like we're finally getting somewhere with all of this...

Anyway, just wanted to share!! Also, a quick question. Does anyone have a gluten-free playdough recipe? I would like to make some to donate to Ella's class at school. OR maybe it would be better to just buy some to send?

Thanks!!

Shannon


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



Celiac.com Sponsor (A8-M):



lbsteenwyk Explorer

I'm so glad you found a supportive doctor! Sometimes you just have to shop around . . .

Guest Lucy
Here's a recipe that someone else posted on another thread here and my daughter (not celiac disease but a great help to her little brother) and I made some batches this weekend.

Open Original Shared Link

Actually, first we got out all the old playdough and threw it away and then we washed the old containers and cutters and such in hot soapy water.  We made 2 batches of dough, both came out light.  She wanted pink and light blue (which we mixed to get purple) and that's what we got.  Since there's no kneading bread any more this was really fun to do and easy.  Each recipe made 3 Play-Dough containers of gluten-free playdough.  It actually works better that the commercial playdough (according to my expert) but it dries out faster.  This is easily fixed by putting a few drops of water on your hands and then mixing the dough to get the water worked in again.

<{POST_SNAPBACK}>

There you go!!!!!!!!!!

Guest nini

Shannon, I'm so glad you had a good experience with this new Dr., that can make all the difference in the world if they just LISTEN and are SUPPORTIVE!

That recipe for playdough that was posted is the one we use. to get different colors , or to get them more vibrant, I add the food color BEFORE cooking the mixture, after adding everything else and mixing it together. The color you see in the pan is pretty close to what you end up with. The more food color you add, the more rice flour or corn starch you will need to add at the end so that it's not sticky.

For white I don't add anything

for pink I just add a few drops of red

for red red, I add almost an entire bottle of color and then add extra rice flour AND corn starch at the end when I am kneading it all together... (after it's cooled!)

for a really pretty blue I use about 15 drops of blue color

same with green

for purple I use about 3 or 4 drops of red and 1 or 2 drops of blue. (too much and it comes out gray)

yellow I use about 15 drops

orange add 1 to 2 drops of red to the yellow

Guest Lucy

have you ever used kool-aid to color it? I have to make it for my sons preschool class and someone suggested this. They want red.

e&j0304 Enthusiast

Thanks for the support and suggestions for playdough! You are right...having a supportive doctor is crucial with this! I seriously felt on top of the world leaving that appointment. It was awesome!

I will definitely try making that playdough. If it turns out, I want to make some to donate to Ella's pre-school class. That way I won't have to worry about her accidentally ingesting some regular playdough at school. There's already enough to worry about at school without adding playdough to it!! :)

Thanks again!

Shannon

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
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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.