New and Seeking Help

[toothdoc]

Hello!  My youngest child (15, they/them) was just diagnosed with Celiac after an endoscopy/biopsy for an unrelated issue.  While looking back there are certainly signs/symptoms we can now relate to Celiac, but it really wasn’t on our radar at all.  After positive biopsy, we just got TTG blood test back with a value of 155.  I’m mainly joining for information and support as we navigate this new journey.  My child has several significant mental health diagnoses that have been the focus of our energy for the past 3 years.  We are interested to see if the diet changes will have a positive effect on their mental health.  My first question is, in a household (family of 4 including older sibling), it it best to go 100 percent gluten free as a family in support?  Not sure how that will go over yet.  What are your experiences?  Thanks so much!

[trents]

Welcome to the forum, toothdoc!

It is best to be a 100% gluten free household for a couple of reasons. First, is the one you have already mentioned. Supportiveness. If the whole family is gluten free, your celiac member is less likely to feel deprived and the odd one out. Second, and very importantly, is that a 100% gluten free household will make cross contamination highly unlikely. But there is something else you need to reckon with and that is genetics. A couple of larger studies in the past two years found that almost half of the first degree relatives of those with confirmed celiac disease were found to have celiac disease themselves when tested and confirmed by biopsy. This caught most of the first degree relatives by surprise because they were largely asymptomatic, what we call "silent" celiacs and conflicted with earlier studies which found the familial coincidence at more like 10% among first degree relatives. So, there needs to be more research in this area but the two more recent studies at least suggest the rate may be much higher than originally believed. My point being that it might be a good idea to have everyone in the family tested before converting to a gluten free household in order to catch the disease early, before body systems damage happens. It takes both the genetic potential plus a triggering stress event for someone to develop active celiac disease.

Edited October 20, 2023 by trents

[Wheatwacked]

Hi toothdoc, welcome to the forum.. You'll find lots of information here in the forum, the articles and the blogs.

23 minutes ago, toothdoc said:

it it best to go 100 percent gluten free as a family in support?

Absolutely!  You may be pleasantly surprised to find out that some of those "just getting older" aches and pains are really gluten in disguise.

Plus it is easier to say do as I do as opposed to DO AS I SAY.  

Gluten foods are heavily fortified with vitamins and minerals that the goverment has determined that without fortification much of the American population will be deficient in.  Those rules don't apply to gluten free foods.  And you want to consume well above the minimum RDA.  That is only good to keep 98% of the Healthy population from getting the symptoms of deficiency of a particular vitamin.  Optimum intake is much higher than the RDA.

Good luck with your journey.  We like to hear how it is going.

[RMJ]

You might consider going 100% gluten free IN your house, but allow non-celiac family members to eat gluten outside of the house when not with the 15 year old. This could make it a lot easier for the older sibling. 

[Scott Adams]

In a perfect world a 100% gluten-free household is ideal, but it doesn't seem fair to make your other child go gluten-free if they don't have any issues with gluten (they should also be screened for it, by the way--all first degree relatives of celiacs should be screened). 

I guess I would have a family meeting and discuss it with everyone, and see how people feel about making such a change. I live in a mixed gluten/gluten-free household, and would not consider trying to pressure anyone into such a dietary change, as it could create bigger issues within my family. That said, everyone in our house knows all the details about cross-contamination, safe food preparation, cleaning, etc.

[Raquel2021]

6 hours ago, toothdoc said:

Hello!  My youngest child (15, they/them) was just diagnosed with Celiac after an endoscopy/biopsy for an unrelated issue.  While looking back there are certainly signs/symptoms we can now relate to Celiac, but it really wasn’t on our radar at all.  After positive biopsy, we just got TTG blood test back with a value of 155.  I’m mainly joining for information and support as we navigate this new journey.  My child has several significant mental health diagnoses that have been the focus of our energy for the past 3 years.  We are interested to see if the diet changes will have a positive effect on their mental health.  My first question is, in a household (family of 4 including older sibling), it it best to go 100 percent gluten free as a family in support?  Not sure how that will go over yet.  What are your experiences?  Thanks so much!

Welcome to the forum.  Our household is mainly gluten free. I have one kid who also has issues with gluten so we have 2 people who are gluten free and 2 who are not. So we buy everything gluten free Except for gluten bread for our nonceliacs. I also send my non-celiac kid to school with gluten snack so that snacks can be eaten outside of the house and he can enjoy them. It is definitely not an easy process and it affects the whole family.  Cross-contamination is the one thing to watch out for.  I tried cooking separate meals it was too much for me and was too worried about crosscontamination. One o advise is to eat as healthy as possible.  Meaning eating vegetables/fruits meats basically non processed food to help the gut heal. I made the mistake of buying too much gluten free junk that sabotaged my recovery.

[Raquel2021]

6 hours ago, toothdoc said:

Hello!  My youngest child (15, they/them) was just diagnosed with Celiac after an endoscopy/biopsy for an unrelated issue.  While looking back there are certainly signs/symptoms we can now relate to Celiac, but it really wasn’t on our radar at all.  After positive biopsy, we just got TTG blood test back with a value of 155.  I’m mainly joining for information and support as we navigate this new journey.  My child has several significant mental health diagnoses that have been the focus of our energy for the past 3 years.  We are interested to see if the diet changes will have a positive effect on their mental health.  My first question is, in a household (family of 4 including older sibling), it it best to go 100 percent gluten free as a family in support?  Not sure how that will go over yet.  What are your experiences?  Thanks so much!

Forgot to mention.  A strict gluten free diet combined with eating lots of healthy foods should have a good impact on your child's mental health. My kid went from getting Cs to A+ at school  months after switching to a gluten free diet. I think kids bodies recover faster than adults.  

[knitty kitty]

Thiamine in the form Allithiamine or Tetrahydrofurfuryl disulfide (TTFD) has been shown to have beneficial effects on autism and ADHD.  

Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study

https://pubmed.ncbi.nlm.nih.gov/12195231/

And...

https://www.hormonesmatter.com/energy-deficiency-asd/

Hope this helps!