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littleguyw/CD

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littleguyw/CD Newbie
littleguyw/CD
Posted

Hello

I am new to the world of Celiac and very new to this forum...sorry for any errors or comments that may be taking out of contents. But I need help understanding what my son is facing in his future also how I can help him more. With that my questions are... We just found out that our son (3

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Lisa Mentor
Lisa
Posted

Hi Sonia and Welcome:

You have found the best information around.

I am sorry about your son's diagnosis, but isn't it great that he can begin to heal without surgery or medication. A change of diet can get him on the road to good health and development.

The TENDENCY for Celiac is inherited. Twenty percent first degree relative will develop Celiac. Even if a person prosess the tell-tale Celiac genes, there is no guarantee that they will develop the disease. Perhaps, you might know someone in your family who might have had "tummy" problems.

Here are some essential links that will help you get through the early days:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

The Celiac Disease Foundation and the Celiac Sprue Association have chapters in most all states. They can direct you to a local support group in your area. Or, if you would like to post your location, we can find someone near you.

I am certain you mind is spinning. We have all walked in your shoes, so please feel free to ask away. We are here to help you in any way.

Dyan Rookie
Dyan
Posted

When my daughter was newly dx'ed I bought a three ring binder and just started stashing information away. Everything any company sent me, any website I discovered, or any notes I took, or any recipe I printed. This helped me a lot because I could tell my daughter to get the note book and she knew how to look things up on her own. And I knew right where I could find out my own answers.

So much information is going to flood you, and you will get over the feeling of being overwhelmed. It takes time, a lot of reading.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

The book Living Gluten Free for Dummies by Danna Korn is wonderful! It is written in simple language and the author uses a lot of humor which I'm sure you could use right now. Good luck! I was in your shoes 9 months ago and I promise, it does get easier!

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Welcome! First, I'd like to assure you that this will get easier. The first couple of months are extremely challenging and emotion filled. My son (now 9 and half) was diagnosed one year ago. I can tell you life is pretty darn good now - and 12 months ago I thought the sky was falling!

Danna Korn's book called Kids with Celiac is a GREAT book. I wished I had bought it sooner. It would've been a very helpful resource in those early days.

The notebook is a great idea. Another thing we use (still to this day) is a rubber banded pile of labels. Whenever we try something new we write on the label what we thought and add it to the pile. You just can't keep track of what you've tried and what you haven't. You may think you will, but a couple trips to natural food store and your memory starts to blur.

This leads to the second big thing - all gluten free food is NOT created equal. Some of the stuff out there is just plain nasty! Lots of the stuff out there is just plain great! So if you try something you don't like write on the label, add it to the pile and move onto another brand.

Next, don't worry so much about the nutrition right now. First learn how to feed him gluten free THEN learn how to feed him gluten free and healthy. Don't go crazy on the lack of nutrition, but don't stress yourself out about it too much either. In the beginning I'm sure most of us lacked in the whole grain department. I'm sure most of us as parents over compensated and offered too many cookies or what have you. It's OK. Once you get a little knowledge under your belt you can go back to making sure all parts of the food pyramid are taken care of. Do try to hit the basics each day though - fruits, veggies, meat, etc.

Many people will tell you dairy may be a problem. Our doctor recommended we wait to see before removing dairy. I personally thought this was a great idea. I like one step at a time.

Another thing I did that helped me tremendously was to make a spreadsheet (on paper would work too, but I'm I like being able to print a new copy each week) of all the meals I knew how to make and could make gluten free. It surprised me how many of our regular meals were already gluten free or could be easily adapted to gluten free. Meatloaf - just use gluten-free breadcrumbs. Spaghetti - check your store bought sauce to be sure gluten-free and then just use gluten-free pasta (by the way, pasta was one area that we found huge differences in taste, we like Ancient Harvest Quinoa and a lot of people recommend Tinkyada).

Your little guy is 3. I'm guessing PB&J is something he likes. Gltuen Free Pantry Sandwich Bread is a mix that is easy to make, freezes well and makes good PB&J as well as french toast. We also use Pamela's Pancake Mix for PB&J on a pancake (my son LOVES these) as well for pancakes and waffles.

Amy's makes frozen mac & cheese that you can buy in many places - just be sure to get GLUTEN FREE not the organic. The boxes look similar. You can also make your own pretty easily with your favorite gluten-free pasta and melted cheese mixed with a little butter and milk. Velvetta is gluten-free, by the way.

Take time to cry when you need to, but then pick yourself up and get back to feeding your little one. This is NOT the end of the world. Yeah, it would be great if our kids were healthy. But if they have to have something (and everyone has something, you know), Celiac is a pretty good thing to have.

As for the genetics, one of you has the gene for Celiac. At any time in your life that gene can decide to "turn on" Celiac, so watch your own health and get retested at the first sign of anything amiss.

Let us know specific ways we can help - i.e. areas that are creating the biggest challenges. We've all been there done that and might be able to help you through the hurdles faster.

shayesmom Rookie
shayesmom
Posted
We just found out that our son (3
littleguyw/CD Newbie
littleguyw/CD
Posted
  • Author

I just wanted to THANK everyone for your posting!! THANK YOU, THANK YOU!! :D I am so happy that I sign up for this site!

Some days I just want to cry because I question EVERYTHING that I give Jack but, I am going to stick to the more naturally food (like I have been).

As far as the milk part goes, we took Jack off of milk about a 2 year ago. Our son has a speech delay and I believe it was because of the dairy. When Jack was around a year old he had over 10 ear infections, then come the tubes and all the meds…wow! So I looked online and did the some research and switched him off. Since then no more ear infections and he really hasn’t been that sick (knock on wood). I do want to mention that our son is a normal (topical) kid with a speech delay but when we took him off of gluten we notice a huge change in him…HUGE change! He is talking more, interacting with us, looking at us in the eyes and no more acting out….but still acting like a 3

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ang1e0251 Contributor
ang1e0251
Posted

I just wanted to welcome you to the forum. You have received some great advice here and the only thing I can add echos their posts. Keep the food simple for now. Only add new foods one at a time and before you know it you'll have a whole selection of foods and meals to choose from. Include your child and other family members in food prep and shopping. It will help everyone "own" the new diet and you won't be scared that you always can be the only one feeding your child. It will get easier, I promise. Keep on being the great parent you've shown yourself to be.

wykey Newbie
wykey
Posted
As far as the milk part goes, we took Jack off of milk about a 2 year ago. Our son has a speech delay and I believe it was because of the dairy.

I just wanted to mention that celiacs can cause a seemed 'reaction' to dairy as fats go stright through and lactose cannot be absorbed and seems to contribute to pail fatty stools and bloating... Also, my son has speech problems. One theory I'm playing with at the moment is that the malabsorbtion of nutriats, as a result of celiacs, has lead to anemia, and without enough oxygen carrying blood to the brain, it has made learning to speek well very difficult for him.

I do want to mention that our son is a normal (topical) kid with a speech delay but when we took him off of gluten we notice a huge change in him

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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