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Hello All New To The Site. My Son Is 2 And Has Celiac Disease

joeysmommy

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joeysmommy Newbie
joeysmommy
Posted

Hello to everyone!! I am very happy I found this site. I hope it comes to some help for my son and the rest of our family. My name is Dana and my son is 2 and was diagnosed in January with Celiac Disease. We delt with this for over a year before we found out. His symptoms started when he started baby food. We took him to childrens hospital to see a Pedi GI doc and they turned us away telling us it was an intolerance and we would be chaseing our tails trying to find out what kind. We asked about his chances of having Celiacs and Chrones and they said it was impossible!!!!! We later with the help of our Pedi found out he was lactose Intolerant so we thought we found what was causing the horrible diaper rash. It cleared off and on for a long time. I still was not satified. He would scream in pain every time he had a BM it would blister his but.( the blisters would bleed and he looked like he sat in a diaper for a week it was soooo bad) The only thing that eased the pain for him was Balmex. As he grew it then started having intolereance to fruits and veggies and anything with sugar. So we did a very bad thing ( not knowing it then) we increases his noodles, breads, and foods made of wheat. He could not tolerate whole wheat. This was the only thing that made us wonder. One day I just couldn't deal with it anymore and I made an appointment with our pedi(who has been wonderful through all of this) and demanded something more be done. We went over his symptoms again and she suggested testing him for celiac despite what the GI doc said. I called to get the results about a week later and they said he was showing antibodies present in people with chrones or celiacs and needed to be seen by a Pedi GI doc. We had a choice to go to the hospital we had went to before and see a different doc or go to a different hospital in another state due to insurance reasons we had no choice but to see another doc in the same hospital. We were sent to a Dr named Dr Alyssa he was wonderful!!!! He didnt look at us like we were crazy(he didnt even have a copry of the blood test to look at) he listened and told us we had to have more blood test and then a scope test to confirm a diagnosis. In january Joey had his scope thest and the results of the biopsey determined that he did indeed have celiac disease. It has been very very hard. We are trying to keep him on a Gluten free diet and for the most part are doing very well but gluten or an ingrediant that contains gluten is in everything. All of his fav foods are no longer things he can eat. We have 2 other choldren ages 1 and 5 and it is sooooooooo hard to tell them no you cnat have this right now because joey cant eat it. He cries and cries. Daycare is also very hard as is family functions becasue they dont understand with the gluten can and does do to his insides. Any help for meal ideas or kids friendly recipes would be a great help. Wow I have written alot sorry!!! TIA

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LDJofDenver Apprentice
LDJofDenver
Posted

You know, Annie's makes a gluten free mac and cheese (in a box) that is really good. Many mainstream hot dogs are gluten free. It seems like gluten is in everything at first, but be assured it isn't. It is a bit of a learning curve at first, but in a couple months you won't be looking everything up and reading labels for a half hour in the grocery aisle.

Most store chains have lists of gluten free products. Many food makers now provide gluten free product lists on their websites, here is a link to General Mills: Open Original Shared Link

You can also purchase mainstream grocery shopping guides. They are about $25 but worth it, and list groceries by category (chips, soups, spices, etc.) and brand.

Open Original Shared Link

Open Original Shared Link

There another out that can also be downloaded to your PDA device, etc., by Clan Thompson.

I have the ceciliasmarketplace - I like it because if a recipe changes they post it on their website so you can cross it off in your shopping guide.

It will get easier, I promise.

mommida Enthusiast
mommida
Posted

It definately gets easier. :)

Keep a stash of favorite gluten free candy to "trade" for offers of gluten trash. Sorry you can't have that turns into pick out what you would like from your safe snacks. You might have to grin and bear it when it isn't the healthiest snack in the stash or when the other kids want the gluten free stuff. :rolleyes:

There are more and more gluten free products everyday to choose from.

Keep a food journal to make sure there are no other food intolerances.

katerzz Newbie
katerzz
Posted

My almost 2 year old was just diagnosed also. The first week was horrible. I felt like someone had died. I was so upset, angry, irritated and scared. By the 2nd week it got easier and now I am realizing we CAN live with this and we will succeed at it. I am sad for him but in just 2 weeks the difference between how he was and how hes feeling now is night and day. Our biggest blow was "eating out" and even that I'm finding isn't going to be too difficult since he is so young. Taking bread away was hard.. we just ordered a bread machine to make our own gluten free because the store bought is not something he like and I dont blame him. We are looking at making a lot of stuff like pasta and graham crackers.

The mac and cheese they are talking about was a winner.. he really liked it. Look up resources in your area, I found a support group and emailed them. They sent me so much info about local resources and shopping it was great.

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

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

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