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How Long Before Child's Symptoms Improved?

MeganP

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MeganP Newbie
MeganP
Posted

My 3.5 year old daughter was diagnosed with celiac disease through a biopsy about 3 weeks ago. Beginning in August of this year, she was vomiting sporadically, complaining about belly pain, and acting lethargic and moody. She has always been underweight and a very picky/sparse eater, but was otherwise healthy until August. We started the gluten free diet immediately and have pretty much made our entire house gluten free. We've done our best to avoid cross-contamination and have made sure her vitamins, toothpaste, etc. are gluten free. (I haven't gotten gluten free shampoo or new cooking utensils, etc. yet, though).

Since starting the gluten free diet, it seems like our daughter is getting better instead of worse. She has been especially lethargic and moody and thrown a lot of tantrums over the past week and a half. She complains that her belly hurts constantly. Has anyone else experienced this? I understand that it can take up to 3-6 months for her to feel better, but I didn't expect her have no improvement at all and to actually get worse. I'm wondering if it could be some normal withdrawal or healing process, or if something else is going on. Thanks for any advice.

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Roda Rising Star
Roda
Posted

My 6 year old became more emotional and had worse temper tantrums for about 2 weeks after he went gluten free. I think he was having gluten withdrawl. It started to level off after that. It was around the 2 month mark that we realized that the moodiness, temper tantrums, and his obcessive behavior over his shoes were gone!

You may want to go ahead and replace the shampoo and anything else that could be contributing to cross contamination in case that is contributing to the problem. Give it some more time, and see what happens. As far as the belly aches, is she still consuming dairy? A lot of people have trouble with dairy because of the damaged villi. The villi produce lactase to digest the lactose in dairy. You could try eliminating it to see if you notice any difference.

Also, did they check her vitamin and mineral levels? Celiac's are often deficient in some or all. That could be causing problems also. Vitamin D, iron, ferritin, Vitamin B12 are commom ones to be low. There are other ones also. I would request a full vitamin and mineral panel.

eatmeat4good Enthusiast
eatmeat4good
Posted

I'm not a child, but my stomach hurt really bad the first month I was gluten free. I was terribly lethargic and slept like 12 hours a day. I was strictly gluten free, but the withdrawal effects of gluten and just the recovery from what all that gluten did to my body...took time to heal. Moody and tired...and nauseous is how I would describe the first weeks. It must be that much more so for a child. Many people have withdrawal effects from gluten. It can be pretty bad for some people. If you are careful about cross-contamination and making sure she gets no trace gluten...it should pass in a few weeks. However, the only way I could handle the stomach pain and nausea was to visualize that it was my "baby villi" trying to grow back. But what can a child do to help themselves through the pain? Be patient, kind and understanding and hopefully her little body will adjust in a few more weeks. It sounds like a really long time...but I assure you she is probably doing her best to cope...moodiness comes from not feeling well. Just wanted you to know it can be common and I have read of it often in posts on here...the withdrawal effects and feeling worse before feeling better. Make sure you double check everything for gluten to be sure that isn't what is effecting her, but other than that just patience and good food. Of course if it doesn't settle down soon, talk to your Dr. but from what I have experienced and read of other's experiences, it sounds fairly common.

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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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