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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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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