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Lilymato1sonwithCD

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Lilymato1sonwithCD Newbie
Lilymato1sonwithCD
Posted

The day he was born I breastfed him he seemed very gassy in pain and very wet stools at each feed not knowing at the time the pasta bread and all the foods I ate was hurting him then on November 2, 2009 we chose o feed him after many years of feeding him pasta bread pizza or anything he wanted we cut back. On november 20th we had his blood tested for celiac disease the test came back and I say it what the ped said " borderline celiac disease" so we went back to the old foods he loved and on 11/30 to 12/3/2009 he was tested for all food and product care even eniromental allergens. it can back for all meat and shell fish wheat all dairy (inclueding eggs) green beans soy rice carrots but not corn or any others by the patch test or under the skin he is allergic to dogs cats and dust mites he is allergic to all kinds of non-organic care products and cleaners we use around the home.

I need more then just papers to tell me what to use or feed him he hates the new foods what can I do please someone help me! :blink:

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Grace'smom Explorer
Grace'smom
Posted

The day he was born I breastfed him he seemed very gassy in pain and very wet stools at each feed not knowing at the time the pasta bread and all the foods I ate was hurting him then on November 2, 2009 we chose o feed him after many years of feeding him pasta bread pizza or anything he wanted we cut back. On november 20th we had his blood tested for celiac disease the test came back and I say it what the ped said " borderline celiac disease" so we went back to the old foods he loved and on 11/30 to 12/3/2009 he was tested for all food and product care even eniromental allergens. it can back for all meat and shell fish wheat all dairy (inclueding eggs) green beans soy rice carrots but not corn or any others by the patch test or under the skin he is allergic to dogs cats and dust mites he is allergic to all kinds of non-organic care products and cleaners we use around the home.

I need more then just papers to tell me what to use or feed him he hates the new foods what can I do please someone help me! :blink:

Lili, I feel your pain. That is a huge diagnosis to contend with. I think many of the moms on this page are only dealing w/celiac; or perhaps celiac and nut/dairy/egg allergies. I would suggest calling your area Children's hospital and making an appointment ASAP with a nutritionist. I did this myself this past week and it changed my life. You'll need a lot of guidance. Best of luck to you. I'll say a prayer for you! Emily

nmorris087 Newbie
nmorris087
Posted

Hi! I joined this forum for my own dietary issues BUT wanted to say that I have a son who has severe GI issues--well he did, he is in "remission" now...he has Eosinophilic gastroenteritis (www.apfed.org) and was on special formula ONLY for years and then gradually added things back in, but we lived many many years on a handful of foods. I recommend you see a GOOD allergist. GI, and nutritionist at a children's hospital. If you'd like, we can talk on list or off about the challenges of having a child who is allergic to almost everything! I have been there and it can be very challenging...mentally and physically :)

Nancy

Lili, I feel your pain. That is a huge diagnosis to contend with. I think many of the moms on this page are only dealing w/celiac; or perhaps celiac and nut/dairy/egg allergies. I would suggest calling your area Children's hospital and making an appointment ASAP with a nutritionist. I did this myself this past week and it changed my life. You'll need a lot of guidance. Best of luck to you. I'll say a prayer for you! Emily

  • 2 weeks later...
T.H. Community Regular
T.H.
Posted

I've seen a website that might be of some use! Open Original Shared Link You make a free account, and then can put in every allergy your son has, and it will let you search for recipes that exclude all the allergens. It's not a big site - I think it's only been around a year or two - so there are not hordes of recipes, I'll be honest. But the people there are also sufferers from numerous allergies, usually, so they might have some good advice and suggestions, at the very least.

The day he was born I breastfed him he seemed very gassy in pain and very wet stools at each feed not knowing at the time the pasta bread and all the foods I ate was hurting him then on November 2, 2009 we chose o feed him after many years of feeding him pasta bread pizza or anything he wanted we cut back. On november 20th we had his blood tested for celiac disease the test came back and I say it what the ped said " borderline celiac disease" so we went back to the old foods he loved and on 11/30 to 12/3/2009 he was tested for all food and product care even eniromental allergens. it can back for all meat and shell fish wheat all dairy (inclueding eggs) green beans soy rice carrots but not corn or any others by the patch test or under the skin he is allergic to dogs cats and dust mites he is allergic to all kinds of non-organic care products and cleaners we use around the home.

I need more then just papers to tell me what to use or feed him he hates the new foods what can I do please someone help me! :blink:

Kelly&Mom Rookie
Kelly&Mom
Posted

Hi Lily,

It can be so challenging feeding these kids, huh!? My daughter and I were diagnosed with celiac disease around the same time. I have an easier time accepting my food limitations. She's definitely pickier when gluten-free foods don't taste "the same." She wasn't feeling that much better so we went back to the gastro doctor and he says she also has IBS so here we go again, cutting out so many good foods or limiting them :( This is when she finally voiced "It's just not fair....." where she has never really complained before. We're working through it. Got new cookbooks, experimenting, shopping and finding out what she likes. Hang in there!

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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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      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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      Anti-endomysial Antibody (EMA) Testing

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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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