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lostmystic76

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lostmystic76 Newbie
lostmystic76
Posted

Hi there - I found this site will searching for support groups and I'm hoping it will help a little. My husband was diagnosed with Coeliac Disease 2 weeks ago today. He has only been diagnosed through blood test, and while I don't know the actual numbers, his doctor said he registered off the charts. He's been having problems for 8 years now and I'm worried about the internal damage that has occurred of the years of not knowing. Today we started our "strict" diet as the items we had been using that were Gluten Free had also been manufactured in plants with Wheat Products - is it just me or is that really annoying? Why mark your item as Gluten Free is there is a high probability it's been contaminated?

He also has a 10 and a half year old son. The BM took him to the pediatrician but they didn't test him because he didn't seem to have stomach reactions to food (even though on occasion he won't eat certain foods because they make his tummy hurt). I told hubby that I want to a second opinion on SS because he's so tiny. I've always worried about his growth delay and I've read that many kids experience problems in development because of celiac disease. He was also diagnosed with ADD when he was in second grade, but I don't think there is anything wrong with him. He's a really smart little boy he's just not with what society has deemed as the "norm".

So there's my story in a nut shell. I look forward to meeting everyone here.

~Nikki~

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ShayFL Enthusiast
ShayFL
Posted

I will eat gluten-free products that are manufactured in a facility with wheat IF they say "good manufacturing practices used to prevent CC......" Personally my thinking is that products that are labeled gluten-free but do not specifically say that they are manufactured in a certified gluten free facility and do not have ANY other information are far more risky than the companies who are aware of CC and take precautions to avoid it.

I would push to get his son tested. Often children come up false negative. Enterolab is an option to see if he has malabsorption and gluten sensitivity. It does not dx Celiac, but can give vital clues. Can opt for the genetic tests as well.

RiceGuy Collaborator
RiceGuy
Posted

I agree there is a distinct possibility his son is also Celiac.

ADD is just one of many conditions associated with celiac disease. See this link for more:

https://www.celiac.com/categories/Celiac-Di...-and-Disorders/

  • 2 weeks later...
MollyBeth Contributor
MollyBeth
Posted
He was also diagnosed with ADD when he was in second grade, but I don't think there is anything wrong with him. He's a really smart little boy he's just not with what society has deemed as the "norm".

I started taking Ritalin when I was 10 or 11...My brother started taking it when he was much younger (before he even started pre-school) and being on those drugs was hard for us. I definately had attention problems and he was the poster boy child for hyper activity. I know it was a hard choice for my parents to put us on the drugs but I think they felt like it was their only option. They are great parents and they always worked with us to help us with our "abnormal behavior issues." Now I'm 25 and after years of having problems with my gut I finally meet a doctor that tells me about Celiac and upon further research find out there might be a connection between Celiac and ADD. I was telling my mom about it and looking back she said that if she knew then that changing my diet was an option she certainly would have explored it... I think you should def have your husband get his son checked. Those meds can wreak havoc on the stomach and that on top of celiac can't be a good combo. I hope you get the answers you are looking for and get settled into your new lifestyle!

Mother of Jibril Enthusiast
Mother of Jibril
Posted

I'm thinking of trying my three-year-old daughter on a gluten-free diet too, but I just wanted to give you another suggestion when thinking about your step-son's behavior...

My daughter is VERY active. She has been since the day she was born. My mom calls her "the Energizer Bunny." I found a great book about this... "Living With the Active, Alert Child" by Linda Budd. She makes a critical distinction between ADD/ADHD and being "active." If your child can focus on something he/she is really interested in (cartoons, a book, a game, etc...) then ADD is unlikely. I completely understand how challenging it is to handle a very active child :) It is possible that a gluten-free diet could help. But... this book has some really good suggestions about channeling energy in positive ways.

I don't doubt that some kids really need medication for ADD... I just think it's worth exploring all your options.

MollyBeth Contributor
MollyBeth
Posted
I don't doubt that some kids really need medication for ADD... I just think it's worth exploring all your options.

That's stated very well. I couldn't agree more!!! :)

Sweetfudge Community Regular
Sweetfudge
Posted
Today we started our "strict" diet as the items we had been using that were Gluten Free had also been manufactured in plants with Wheat Products - is it just me or is that really annoying?

No, it's not just you :D it annoys me a great deal! You've come to a great place to get answers and help for mastering this "lifestyle". Welcome aboard!

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climbmtwhitney Apprentice
climbmtwhitney
Posted
He also has a 10 and a half year old son. The BM took him to the pediatrician but they didn't test him because he didn't seem to have stomach reactions to food (even though on occasion he won't eat certain foods because they make his tummy hurt). I told hubby that I want to a second opinion on SS because he's so tiny. I've always worried about his growth delay and I've read that many kids experience problems in development because of celiac disease. He was also diagnosed with ADD when he was in second grade, but I don't think there is anything wrong with him. He's a really smart little boy he's just not with what society has deemed as the "norm".

Hi Nikki,

Please get your SS tested. My daughter, also 10 1/2, was recently diagnosed with Celiac. 3 of her symptoms that made me get her tested are:

1. stopped growing (grew maybe 1/2" in over 2 years; and our family is TALL!)

2. diagnosed with ADD last Fall (previously a straight-A student)

3. lots of tummy problems

All just like your husband's son. She had other symptoms too. They all slipped by her Pediatrician. Her Ped would just treat the symptoms. It was ME that thought to test her for Celiac "just to rule it out". I also tested myself. Turns out we both have Celiac. It's a shocker, a bummer, and a true blessing all in one. She's been gluten-free for 7 weeks now and is doing wonderfully! :) We're absolutely thrilled!

Trust your instincts. I, myself, have been to specialist after specialist (including Stanford) for the last 5 years. They ALL missed it. I have lost a lot of faith in doctors.

Good luck! I've found lots of help here on this forum already. Welcome! Welcome!

Sonya

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
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