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Any Thoughts?

Becky6

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Becky6 Enthusiast
Becky6
Posted

My daughter has been dairy free since July and gluten-free for almost 2 months now. Now clearly she is doing way better gluten-free! Her runny nose and sinus infection are gone and it had been there for over a year and no meds helped! Her bm's have improved but are not totally better. That is where my question comes in: She used to have 10 watery running down her legs bms a day before going dairy free. Then they went to 2-3 a day blowouts but not watery. Now off of gluten she will go 1-2 days w/o a bm and we had a few solid ones here and there. But they are still loose but def have more texture to them and are more thick than they were. But they will still go up her back and up to her belly button some days. I am wondering if she is still healing or if she could be getting gluten some where (I don't think she is but you never know!) or could she need to be casein free too? I know if she gets any ounce of lactose she is a disaster! Thanks!!

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2Boys4Me Enthusiast
2Boys4Me
Posted

Hmm. I'm not really sure, since my son was almost six when he was diagnosed, and pretty much asymptomatic.

I do know that there are a couple of good Gluten-free Casein-free websites out there that may have more info, but I'm not sure if they have forums or not. Just google Gluten-free Casein-free diet and see what happens. One might be called Gluten-free Casein-free Utah, and I can't remember the other one. I am sure that a Mom with a child who was diagnosed younger than mine will come along soon to help you.

mommida Enthusiast
mommida
Posted

I think your daughter could definately still be healing but, check all of your hygeine products again. Do you have pets? Make sure pet food is out of reach. Playdough?

Ursa Major Collaborator
Ursa Major
Posted

I would take casein out of her diet and see what happens. That could definitely be the problem.

Guest nini
Guest nini
Posted

she may still be getting some gluten, ck vitamins too, food preparation surfaces, or it may be that she needs to be casein free too, or again, could be that she's still just healing... honestly I wish I had a better answer for you. trial and error may be your best friend right now...

I'm thinking... thinking... nope, got nothin...

sorry, brain not working tonight

taweavmo3 Enthusiast
taweavmo3
Posted

First I would double check everything she eats, bathes with and plays with. I've had to do this several times just to help me eliminate the source of problems. I've even re-called companies to double check, re-check my lists, etc.

If everything checks out okay, then my guess would be that she is still healing. Emmie's stools took a while before they were what I would call normal. Some days, they would seem normal, then she would have one that was similar to pre-gluten-free days. I always worried it was gluten, but I think it just took quite some time for her to heal. Things are still improving for us in the poo dept. and it's been nearly nine months. Glad to hear your daughter is headed in the right direction....hope she just keeps getting better and better!

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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.
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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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