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

New Here- Dd May Be Celiac


Irishlass

Recommended Posts

Irishlass Rookie

My dd has had allergy troubles all her 7 years, and joint pain most of them too. Her joint pain has increased the past couple of months, so I took her into the pediatrician today. After examining her (her stomach was very tender) and looking again at our history, he said the first thing he could think of was celiac. He sent us to the lab for blood tests for celiac and other things (RA, etc) and recommended that after the labs are drawn we go ahead and put her on a gluten free diet. He said the test may come back negative, that it often will even if there is a gluten problem, but that her clinical experience would be the real deciding factor- if the diet helps then that's the problem.

I went to our natural food store and got some gluten free products to replace some of the things we normally use. After perusing through the forums, though, I freaking out a little... shampoos, soaps, there are probably a dozen more things I can't think of that may have gluten in them. :ph34r:

In the initial phase, how important are the other stuff- is the food the most impt thing at first?


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Breath deeply and take it slow. There is a lot of help here. But, you are blessed to have a wonderful doctor (so many were not). So, half of your battle is done. Worry about the gluten free foods first and maybe the shampoo and the soap she bathes in. Just in case they get in her mouth. The easiest for me at least was going with all fresh foods and then I did a lot of wok cooking. I did that as I researched what to buy and not buy. Many will post here to help you further. Good luck.

flagbabyds Collaborator

Dude you have an awesome doc!

armetta is right, just breathe at first. If your doctor is that good, he might have some suggestions into the diet. I ould worry about the little things too, because if you are getting contamintaion frm somewhere, she might not get better. If you go the Whole Foods they have a gluten free bakehouse and it is really good gluten-free breads and pies and cookies and stuff.

If you h ave more questions, then you can e-mail me, I am 15 and have been celiac all my life.

TCA Contributor

It took me weeks to get the hang of all of this and I still struggle sometimes. We've all been there, so don't worry. You'll learn too. I have a list I started for people who keep my son that has the basics on it. There's a list of foods that he eats (very picky) included. PM me and I can send it to you. I spent days going through my cubbard and med cabinet to get rid of things. We were using some curel lotion that made my daughter very sick. She is hypersensitive, though. You will make mistakes, but don't panic. It all will come in time.

Be thankful for your doctor. I had the same symptoms all my life and no one would listen. They tested for RA and it was negative, so they thought it was in my head and called it growing pains. :angry: I am now pain free for the first time in my life and I'm now 30. :) I'm on allergy shots and have asthma, but it's getting better slowly. I hope your daughter feels better soon.

Let me know if I can help in any way.

Irishlass Rookie

Thanks for your thoughts everyone.

I do have a great dr- team of drs, actually. The dr we saw is in a two dr practice with the lady who is our main ped. She's been traveling a lot lately because she does a lot of autism research and is the DAN network's head dr.

Anyway, is there anywhere on the net where there is a list of manufactured products that are gluten free- foods, body care, etc?

Guest nini

there is the Delphi forums list which I can e-mail to you along with a bunch of other files I've put together in a Newbie survival kit... if you would like this e-mailed to you just e-mail me at nisla@comcast.net and in the subject line put "request newbie survival kit" and I will promptly e-mail it to you!

My daughter will be 6 next week and her and I both have been gluten-free for about 3 years now! It will be ok! Stick to foods that are naturally gluten-free at first, then you can try some of the substitute products. We all can help you figure out which ones taste better than others so you don't waste a ton of money!

Guest Robbin
:) Hi and welcome. WOW YOU HAVE A GREAT DOCTOR!! Yes, as nini said, it will get so much easier and if you get a couple of cookbooks, you can make substitutions for a lot of things. They are coming out with a lot of great products too. I would encourage also to find a support group maybe with other kids your daughters age. It helped my son when he went to camp for diabetes sooo much to see other kids like him, that he wasn't the only one with a different way of eating. Take care :)

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



Celiac.com Sponsor (A8-M):



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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.