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New With Wheat Allergy

JDB

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JDB Newbie
JDB
Posted

We're currently in a food challenge for the next 2 weeks to prove our sons delayed WHEAT reaction (he is also allergic to SOY). 2 Dr's looked at our 2 1/2 year olds skin patch test, and they both agreed he was positive for a wheat allergy (they don't see if often), but they are making us challange it> annoying!

Anyway,sadly our story is so much like other children these days:

"colickey" baby

no sleep

diahrea/ muscus

rash everyere

excema

GERD, acid reflux

underweight and falling off charts

After 2 years of medication we had enough. Our son was having side effects from them. I kept PUSHING for a real diagnosis. After 2 ped GI's we finally got a "unknown food allergy" diagnosis. Although our spunky 2 year old boy did not test positive for celiac's (boy I was convinced) FINALLY he tested postive allergic to wheat.

We've been a diary free-soy free, and lately organic family working VERY hard at this food thing. Everything made him sick. He eathier vomited our didn't eat. Nights were horendous, downright awful.

After switching to organic it was like a different child. I though that was the answer! I still like it, but his improvemnt is because I cut out flour and sugar for a time (worred about fructose intolerance as well), then we thought it was corn. Now 4 days into gluten free we hope we are on our way to healing our poor son. I HOPE

We will need help with food. Fortuntely I love to cook (maybe not this much), and can do it. Personally I am gluten free for a few weeks just on my own, AND I HAVE NEVER FELT BETTER!!!!! This is how normal people feel?? I was so tired of the bloat and gas my whole life. What a drag. I am inspired to go raw vega, but I have alittle bit much to deal with right now :)

I hope to share stories with you all. I hope everything is going well for you children with celiac. OH coincidentally (and rather amazing I might add) a week before we got our wheat allergy dx, I met a mom in the park with 10 children and many of hers have celiac! I had the urge to get her number, and thankfully I saved it! She's been gluten free for 8 years, and if she can do it I can :) I do have 3 kids 4 and under, but not 10 :) Sadly they almost lost their first child to malnutrition because of it. All's well that ends well :)

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T.H. Community Regular
T.H.
Posted

good luck to you!

We had a similar improvement on going organic, too. We're gluten free as well, which showed improvement, but organic made a big different too, it's amazing, isn't it?

Oh, and you might want to check out the most recent research into gluten free grains - they were saying that any non-gluten grains and flours can automatically label themselves as 'gluten free' in the States, but that a recent study was finding high levels of gluten/wheat contamination of these grains and flours. If your little one is very sensitive, I figure that could be a problem!

My kids keep having these reactions periodically that I can't figure out, and after hearing that, I'm wondering if some of our gluten-free flours are not so gluten-free. I'm ordering some of the home tests for gluten to start testing for these - very frustrating.

But I hope this goes well for you and you find the answers you've been looking for to help your little ones stay healthy!

JDB Newbie
JDB
Posted
  • Author

hmmmm, organic helping...why do you think that was?

tonight our son is very gassy (TMI< but not in this world!)

the gluten free stuff is often not organic, so that is frustrating, very.

Juliebove Rising Star
Juliebove
Posted

Welcome to the forum! My daughter is allergic to wheat as well as some other things. Sometimes I will cook extra of something to eat later. I don't do this often as we don't really like leftovers but she takes a lot of dance. Right now she is in summer dance camps as well as classes...sometimes for as many as 8 hours a day. So I have to have something to make for her dinner.

The other night I did chicken teriyaki. She prefers the legs but I did a few breasts as well because they are not as messy to eat at the dance studio. I used a soy free soy sauce that is coconut based to make the teriyaki sauce. I also cooked up extra rice and put it in an individual container for her. The rest is in the freezer for meals on other nights.

I also made several individual meat and vegetable loaves and they are in the freezer as well.

I like to do potatoes in the crockpot. I have a very large one so I can make a lot. Pricked and wrapped in foil, they make good baked potatoes. Cook for about 8 hours. We like them stuffed with nutritional yeast, green onions, olive oil and rice milk...sort of mashed then stuffed back in the shells and put in the oven until heated through. Or I will cut them in chunks and add some onion chunks for flavor. Also salt and pepper and maybe some parsley and a small amount of olive oil. This will make enough for two meals to eat with meat of some kind and there will usually be a little bit left to add to make a quick vegetable soup.

We are lucky in that there is a health food store near where we live. The owner has celiac. So while she already stocks a lot of stuff that is organic and gluten-free, she is always on the lookout for new products and will also place special orders for us when she can.

Skylark Collaborator
Skylark
Posted

hmmmm, organic helping...why do you think that was?

tonight our son is very gassy (TMI< but not in this world!)

the gluten free stuff is often not organic, so that is frustrating, very.

In the US, organic food is supposed to be non-GMO. There are quite a few studies showing that some of the genetically modified grains are more allergenic than natural ones. I don't know if that's the issue but it comes to mind.

macocha Contributor
macocha
Posted

My friend is trying a new recipe where you use circle cutters and make hot pocket type treats... will post it once she tries the recipe to see how it goes. I am anxious to try these.

my son is allergic to wheat as well as being celiac.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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