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africanqueen99

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africanqueen99 Contributor
africanqueen99
Posted

Hello all.  I'm a regular old midwestern mom that is joining in for help and support.  Last week I found out why my 1.5 year old dropped from 25% weight to 3% weight at 12 months...and hasn't really grown since.  The Ped ran bloodwork *again* and she was 100+ for her celiac test.  I am taking her to the dietician tomorrow and my husband and I take her to the GI on Monday.  Due to her age it sounds as if they won't do a biopsy, but I'll find out next week.

 

There has been so much to read and digest in the last week - and I can only imagine so much more to learn!

 

First, I'm so, so grateful to have a diagnosis.  How cool that my baby girl is finally going to grow (!!).

 

Second, I'm mentally putting together a list of working through this with my family (we also have a 7 y/o girl and 3.5 y/o boy).  After meeting with the dietician and GI we're going 100% on the diet.  The whole house is going to be gluten-free.  I think I know what to take out, what to buy new, how to keep the house gluten-free, but there are a few other things that I'm already mulling over:

1. Do I keep my car (which also carries other peoples' kids regularly) gluten-free?

2. Do I make sure that nobody ever brings food into our house?  We are the "entertaining" house and do a ton of pot-lucks, shared snacks, etc.  Providing all the food/drink for so many all the time sounds remarkably scary!

3. Do you have your older kids wash hands upon entering the house every single time?

4. She is still nursing so I'll obviously be on the diet, too, but will things like my beauty products harm her via my milk?  If so, suggestions on products to use would be highly appreciated.

 

Also:

5. What do you wish you would have known then when dealing with your little kid?

6. How did you bill this to your older kids so they don't feel "slighted" by the changes?

7. Did you also get tested, along with the other members of the family?

8. Something hit me earlier today - it would be so easy to fall into this weird disordered eating issue.  How to avoid this?

 

So many questions. :)  Thanks for any help you can give.  Just reading this particular forum has been so incredibly helpful to get my thoughts focused.

 

Angela

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kareng Grand Master
kareng
Posted

Because Celiac disease is genetic and you must be eating gluten to get a positive result - get all the kids and you and the dad tested before eliminating gluten.  Good to know right now how many of you actually have Celiac at this point. 

africanqueen99 Contributor
africanqueen99
Posted
  • Author

Yes, thank you for that.  We haven't altered our diets yet - waiting to see the doctors first to see about additional testing.

cyclinglady Grand Master
cyclinglady
Posted

Hi, I have celiac disease and my husband has been gluten free for 12 years (no formal diagnosis).  

 

Here's a few answers to some of your questions.  I'm sure others will follow!

 

  • Gluten free cars
  • Daughter (not gluten free) must wash her hands when entering the house (gets rid of the germs too!)
  • All playdate snacks are gluten free (homemade popcorn (cheap), fruit, potato/corn chips, ice cream, yogurt, gluten-free cookies (they don't even notice)
  • I'm the cook, so most family parties have always been  at our house.  I made most everything but have them bring drinks, potato and corn chips, gluten-free salsa, uncut fruit like grapes or I cut up when they arrive, salad fixings that I throw together, paper goods.  They  admit that they like lettuce wrapped burgers!

 

I don't think my daughter has ever felt slighted by our going gluten free.  I pack up her lunch with pre-packaged gluten foods (e.g. goldfish, cookies, frozen P & B sandwiches).  She's learned to eat a BLT on gluten-free bread and spaghetti on gluten-free pasta and as long as I bake homemade gluten-free baked goods, she's happy.   Our dinners have always been gluten-free her entire life!  

 

She does eat Cheerios but she uses her own bowl and I pour the cereal and be sure to clean the counter (we use a separate area).  She like rice porridge and eats Rice or Corn Chex.  My friends bake gluten goodies for her and I freeze them for her lunches.  

 

She goes out for meals with family and friends -- a nice time to bond. 

 

I would be more diligent about keeping gluten safely away from your baby.  They put everything in their mouths!  

 

Hope this helps!

africanqueen99 Contributor
africanqueen99
Posted
  • Author

Thanks for your reply!  I'm going to start keeping lists of appropriate snacks - love your suggestions!

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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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