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New Here- Dd May Be Celiac

Irishlass

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Irishlass Rookie
Irishlass
Posted

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?

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mouse Enthusiast
mouse
Posted

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
flagbabyds
Posted

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
TCA
Posted

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
Irishlass
Posted
  • Author

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
Guest nini
Posted

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
Guest Robbin
Posted
:) 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 :)
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  • Recent Activity

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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