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jmjsmomma

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jmjsmomma Apprentice
jmjsmomma
Posted

Hello Everyone,

I cannot put into words the overwhelming relief I feel in finding this board!! My name is Shannon. My 5 1/2 year old son, Jackson, has recently been diagnosed with Celiac Disease. Long story short, he fell off the growth charts at his 3 year c/u. Under the care of a pedi endocrinologist since Jan 07, tested negative for growth hormone deficiency. Monitored every 6 months and at the 12.17.08 f/u appt, the doc was very concerned that he had not grown at all in the previous 6 months. I mentioned that he had been complaining of the odd stomach ache and the bells went off. She ordered the test and called me back to say that his b/w was "alarming". Meet with the pedi G.I. on Jan 8, and he was scoped on Jan 10. He's been gluten free since Jan 9th.

While it was initially completely stressful, we are doing pretty good 2-3 weeks into it. He is a happy, pleasing child so he hasn't resisted at all...yet!! He is my meat, veggie and fruit eater and is willing to try anything. My 3 year old son and hubby have tested negative. My results are still pending. Questionable is my 2 year old daughter. Her results came back negative, BUT, she is IGA deficient, so last week it was off to the G.I. with her! He said her deficiency render the panel useless so we have to do the genetic screen on her next week. UGH!!!

I'm happy to have the diagnosis and the knowledge that my 5 1/2 year old (who is the size of my 3 year old) will hopefully catch up and feel better. It is all so shocking as he really was very asymptomatic other than the odd belly ache. But of course now that we have the diagnosis and knowledge, he had other signs (distended belly, slow growth).

Just feeling isolated and alone right now....really need a great group of Mommies to help muddle through this maze! I look forward to getting to know you all!

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Jestgar Rising Star
Jestgar
Posted

There is a great group of mommies here. I'm not one of them, but I wanted to welcome you just the same :P

dandelionmom Enthusiast
dandelionmom
Posted

Welcome! This forum has helped us a lot.

Our 5 year old was diagnosed a year and a half ago and I can't even begin to tell you the transformation we've seen in that time. She went from the littlest in her class to the tallest (and she's no longer the thinnest!).

happygirl Collaborator
happygirl
Posted
There is a great group of mommies here. I'm not one of them, but I wanted to welcome you just the same :P

Ditto. This is a great resource, so make yourself at home. There is always someone with an answer or opinion. Welcome to the board!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Welcome! This forum has helped me tremendously. It's a great place to vent, ask questions, and learn! I don't know what I would do without this forum! I felt just like you when my young son was diagnosed but I promise, it gets easier. Now, shopping gluten free is second nature. The positives far outweigh the negatives in the gluten free lifestyle. Your son will begin to grow and thrive and you will be a gluten free believer just like the rest of us!

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Just wanted to add my "Welcome!" The beginning is a stream of ups and downs. We'll help you through the downs and celebrate the ups with you! We've been gluten-free for a litte over a year, and it really does get MUCH easier than it is the first couple of months.

Welcome!!

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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