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Lisa

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Lisa last won the day on December 26 2018

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  1. I have Celiac disease. It was just diagnosed in this summer (altho I have been sick for 16 years...it has been a blessing to finally figure out what the problem was). I am fairly certain that it comes from my dads side of the family (based on their medical histories), but he will not get tested. His brother, my uncle, was just diganosed with Paget's Disease. Has anyone out there seen any correlation between Celiac and Paget's? I am kind of hoping that if there is, maybe THEN my dad will get tested. Thanks!

    I don't know about Padget's Disease, but osteoporosis, arthritis, fibromyalgia and similar issues are quite common.

  2. I don't mean to be critical, but I think you may be misinformed. My understanding of the FDA's requirement for labeling is that "wheat", as one of the Big 8 allergens, must be listed. I haven't seen anything yet published by the FDA that says rye, barley, and oats must be listed as well. The appellation "gluten-free" is only voluntary; so if something has in it rye or barley derivatives that contain the gluten proteins, then the manufacturer isn't required to list it. Likewise, even if the manufacturer hasn't added anything WRBO, they don't have to label the item gluten-free. That is what scares me every time I see "natural flavorings" such as may be included in the broth injected into some poultry. Unless the label states gluten-free, I don't know that "natural flavorings" are safe. Two incidents in the last two months with rapid-onset symptoms after I ate chicken have convinced me to check each brand.

    I believe that the USDA requires that ALL grains be labeled in meats and poultry. It is separate from the FDA Labeling Law.

    (someone else can provide a supporting link)

  3. Well, great. They wanted me to fax my results in to them tomorrow.

    :rolleyes: Why wouldn't they view these results as having any value? They are the

    same tests they give? Tests are tests, right?!

    Hi Scully,

    The Enterolab stool test is not considered a tool to diagnose Celiac Disease. The Celiac Sprue Association, Celiac Disease Foundation and the Gluten Intollerant Group does not recognize the stool test as a means to diagnose at this time. It is not the same standard serologic blood panel that a MD would order:

    Anti-gliadin antibodies (AGA) both IgA and IgG

    Anti-endomysial antibodies (EMA) - IgA

    Anti-tissue transglutaminase antibodies (tTG) - IgA

    Total IgA level.

    Coupled with your stool test and a positive dietary response, you doctor may diagnose you with a gluten sensitivity, but it cannot tell you if you have Celiac Disease.

    I just noticed that you said that your blood work was positive. If you are referring to the above tests, then yes, you do have Celiac Disease. Positive blood work is a diagnosis in itself.

  4. I recommend buying the Triumph Dining International Dining Card pack(20 cards) Each has recommendations on safe and unsafe ingredients, cooking methods that are specific to that cuisine and are English on one side and the language of the country that the cuisine comes from on the other.

    ditto on the Triumph Dining Cards. You can find them at www.triumphdining.com or The Gluten Free Mall. They are wonderful.

  5. So my son has had severe constipation, soar distended stomach since he was about 3 months old. At about 11 months he started getting up every night screaming hysterically, not wanting to be touched, fed, held, nothing. He would just roll around the bed as if he were in pain. About this time he also became very sick for months with pneumonia and chronic sinus infections.

    I was told by the Dr's that his hysterical fits was probably just a behavioral issue, even though he acted like he was in pain. I work with behavioral children and was told by a colleague that they have tried gluten free diets to help with this. So I tried it and like magic he started acting better, sleeping through the night, his bowels got better etc. The Dr's seem amazed by this and so the talk of celiac came up.

    He was tested, but since he is currently gluten free it came back normal. He was shown to be anemic though. Now the Dr's are thinking of putting him back on gluten for a month to find out if he is really celiac. Is this the only way to truly determine celiac? Is there any other options? Part of me really wants to know for sure, but I don't want to cause him pain to find out. He is also taking supplements for his anemia, but he still looks sick, all the time.

    This probably sounds very rambly, I'm just trying to find out some more information, opinions etc.

    Welcome Chrisd,

    Testing children under the age of 5 is known to be unreliable. Testing for adults is not what we would like regarding accuracy. There is a gene test that could be done, regardless of the gluten status of your son.

    Celiac tendency can be inherited. Perhaps you or your husband have had digestive issues.

    I always hate it when doctors want to add gluten back to a child's diet, when it creates such discomfort, for the sake of a diagnosis. :( I also understand the need to know.

    I will let the other mothers who have dealt with this choice, add their comments.

    Good luck and glad to have you here.

  6. I was diagnosed in mid-october this year. My brother was just tested (blood test) and his results were negative. does anyone know if this is common? for one to have it and the other to not have it? Also, can anyone tell me, should I consider being re-tested?

    I had a biopsy for something totally different, and they said the results indicated that I should be tested for Celiac disease. I had a blood test which came back positive.

    The latest stats I have indicates 1 of 22 first-degree relative tested positive for Celiac Disease.

    The Celiac gene may be inherited making you predisposed to the illness. Although, there is no guarantee that you will develop Celiac.

  7. I was told that maltodextrin, regardless of it's source is "Gluten Free". That Gluten is a protein, and maltodextrin is a sugar. That the reason some celiacs react to maltodextrin, specifically derived from wheat, is because many celiacs are also intolerant of other wheat products. So that, some celiacs and gluten intolerant people, are ok and others are not, it depends what else they're allergic to.

    If you react to maltodextrin, the suggestion would be that unless its contaminated by something else, you may just simply be intolerant or sensitve to wheat products, as well as gluten.

    Open Original Shared Link

    Maltodextrin can be derived from any starch. In the US, this starch is usually rice, corn or potato; elsewhere, such as in Europe, it is commonly wheat.

    If it is maltodextrin is derived from wheat, it must be listed by US labeling law.

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