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Lilymato1sonwithCD

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Lilymato1sonwithCD Newbie

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

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

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

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

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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    • akebog
      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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