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Developmental Delays?

Guest taweavmo3

By Guest taweavmo3
in Parents, Friends and Loved Ones of Celiacs

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Guest taweavmo3
Guest taweavmo3
Posted

Hi there, me again, the newbie!

I was just wondering if any other celiac kiddos displayed some developmental delays? If so, did you get any help, such as ECI for them? We are going to a new pediatrician in a week, and I was going to ask for a referral to get Emmie formerly evaluated. She is 3, and is still showing no signs of potty training. I know every kid has their own time, but I would think she would show *some* signs by now. Her speech seems behind to me too....as does her comprehension of some things.

Part of me thinks I'm overreacting and that she'll catch up in time. But, I'm also worried that if I do nothing, she won't be ready for pre-k next year, and she'll end up being held back a year for kindergarten. Any thoughts or experiences with this? I don't even know how the ECI (early childhood intervention) program works.

And, since it seems to be taking us a while to really get the hang of this diet, I feel like it will take much longer for her body to catch up physically and mentally to where she is supposed to be. How long does it take before you really start to see drastic changes? We are only 3 weeks in, and have had a few accidents in the meantime, so I'm not expecting anything too soon. I feel so guilty when she has a loose stool, b/c I know gluten has snuck in from somewhere, and I'm delaying her growth once again. Thanks for letting me vent....I've been doing alot of that lately!

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angel-jd1 Community Regular
angel-jd1
Posted

I have read where some children DO experience developmental and physical delays. They seem to "come out of it". Things will start catching up, height, weight, speech etc.

-Jessica :rolleyes:

scaredparent Apprentice
scaredparent
Posted

My son has been gluten-free for a little over a month but he has some developmental delays. Mainly speech. He has caught up alittle but is still way behind. He said mama for the first time at 20 mo. He has been in speech therapy for about 9 mo. They say he is making improvement because he now makes sounds like mooo, booo, etc. They told me it will take a while. Good Luck

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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
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    • 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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