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Cause For Celebration!

Rebecca's mom

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Rebecca's mom Rookie
Rebecca's mom
Posted

Hi all,

I don't usually "start" posts, but I just had to share this with people who would understand. Our youngest daughter was diagnosed 1 year ago with Celiac Disease. Her tTG number was >100, as was her anti-gliadin number. She had Borderline Stage IV damage to her intestines. She had NO symptoms - none. The only reason that her celiac disease was "caught" is that she has the most awesome pediatrician.

You see, Rebecca has Down syndrome. Her pediatrician has a step-daughter who also has Down syndrome, and her mother had recently been diagnosed with celiac disease. After their daughter started to have the same symptoms, they had her tested, and she also had celiac disease. Since her dad wanted to know if he needed to do anything different for a child with DS who has celiac disease, he started researching it, and discovered that people with DS have a 1-in-8 chance of developing celiac disease in their lifetime.

Because this pediatrician has a special place in his heart for kids with Down syndrome, he has about 30-40 kids with DS in his practice. He took it upon himself to screen each of them when they came in for their well-child checkup. That is how we found out that Rebecca has Celiac Disease.

Well, we had another blood test run a couple of weeks ago at Rebecca's latest well-child checkup, and I am thrilled to report that her tTG number has gone down to 6!!!!!!!!!! We thank God each and every day that this wonderful pediatrician literally saved our little girl's life. She is doing so well, and we know that a gluten-free diet has a LOT to do with that.

Anyway, I just wanted to share our happy news with all of you. I appreciate you taking the time to listen -

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jerseyangel Proficient
jerseyangel
Posted

Oh Teresa, what a great story!! I'm so happy that Rebecca is healing and that her Celiac Disease was caught. What an amazing doctor. :D

Thanks for sharing!

Rebecca's mom Rookie
Rebecca's mom
Posted
  • Author

Thanks so much! Yes, "Dr. Frank" is a pretty special guy. Thanks to his decision to test his DS patients, not only have we been able to educate a lot of families in our local Down syndrome group, we have been able to "catch" a lot of children who aren't in our doctor's practice who might not have been tested otherwise. We have also had several parents (mostly moms) who have read about the symptoms, gone in for testing, and discovered that THEY have Celiac Disease!

I keep telling everyone who will listen that "A kid with Down syndrome saved my life", because as a direct result of Rebecca's diagnosis, I started on a GFD. I tested negative for celiac disease, but I had a rash that had been hanging on for 3 years - it cleared up almost immediately. It turns out that I had DH all this time - it didn't ever itch, so my dermatologist never thought to test it! I recently found out that I am the parent who passed along the Celiac gene to our daughter.....

In the past year, I have lost almost 40 pounds without even trying. I have been fighting my weight for most of my adult life, and for the first time, I KNOW that I am going to lose most, if not all, of it, and keep it off for good. If it hadn't been for our daughter coming into our lives 8 years ago, none of this would have happened. We have been so incredibly blessed!

Jestgar Rising Star
Jestgar
Posted

What a great story. It feels good to know that there are good things in the world, too. Thank you for sharing that.

ang1e0251 Contributor
ang1e0251
Posted

Thank you for sharing your insperational story! My husband works with mentally handicapped some of whom have Down's. Because of my diet he knows exactly what to do for them. It's such good knowledge to have that your child had no symptoms and still was positive for celiac disease. It justifies the testing for family members. I get no response when I tell my family to be tested. Maybe her story will move them.

RollingAlong Explorer
RollingAlong
Posted

What a wonderful story. I wonder if each of our doctors knows how many celiacs are in their practices - and statistically, how many they should have.

happygirl Collaborator
happygirl
Posted

This may be one of my absolute favorite posts that I have ever read on this board. I'm happy you took the time to "start" the thread and share your wonderful story. Your daughter is lucky to have you as her mom.

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Gfresh404 Enthusiast
Gfresh404
Posted

That's awesome! I love to hear stories about good doctors since you always hear so many stories about how awful doctors are.

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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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