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not sure where to post this... Celiac Disease?

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  • Momelf
    replied
    Yes, defining your diet with all these restrictions sure is challenging. I took a test from my naturopath's office. As with anything, there's a range of scoring. For this test, if you score a 10, you have CD. I scored a 9 and I don't want to get to 10, so I'm going glulten-free.

    Also, I find that drinking milk causes problems, so I'm trying to reduce that too. Just discovered yesterday that rice milk is on the "maybe ok" list, instead of the "generally ok" list, so I'm going for more almond milk.

    Are you guys able to eat oatmeal? I read that if you buy the expensive brand, there's less chance of cross-contamination. What do you think?

    Darlene

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  • ICNDonna
    replied
    I don't have celiac, but a friend was diagnosed via a blood test.

    Donna

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  • mganstin
    replied
    I have Celiac Disease as well if anyone has any other questions.

    I've had it my whole life but I've only recently been diagnosed. My symptoms are abdominal "bubble gut", anemia, peripheral neuropathy, restless legs syndrome, mouth ulcers, light colored stool, diarrhea, fatigue, neurological problems, along with others...

    I got my diagnosis through a blood test (it was missed during an upper endoscopy). It's the IgA level that you need to look out for. I believe the diagnostic criteria is between 11 and 17. 11 is mild celiac and 17 is severe. Thankfully you don't need to take any medications for Celiac but most doctors want to treat the anemia with iron and B12 supplements (pill form). IC people need to AVOID THESE. I made the terrible mistake in taking them and I've never had so much pain in my life. It causes horrible burning from the preservatives contained in them. The anemia is better to deal with than a burning bladder.

    Unfortunately CD was missed since the day I was born until this past year..and because of this I've had problems my whole life. I first started out with terrible constipation (like more than a week at a time without a bowel movement), and it was assumed that I had just IBS. Next I got mouth ulcers (I'm talking hundreds at a time. I could barely swallow). I got Henoch Schonlein Purpura after that when I was a child (vascular disorder-allergic reaction from gluten). I then started to get more neurological manifestations such as ADD as well as a short stature. I was always shorter than every other child when I was growing up. Never once did a doctor ever think that all of these things could be related and I always just got the "well we don't know why you have this or that" and I've had to deal with that for years. And if I hadn't so increadibly persistant over the years to seek out a correct diagnosis I may have never known that I had this monster. Anyway, I have no doubt in my mind that I got all of these things because my Celiac Disease was never treated.

    One thing to consider is your family tree... Celiac Disease tends to run in families with a Western Irish descent (my doc stressed that I find the root of this disease in my fam because it can not only solve the mystery on where it came from but it can also help in discovering the disease in other family members that my be unaware that they have it). I'm only a fraction Irish on my mom's side but it is my dad (who is of German descent mostly) that has the gastro problems...he's being tested next month for the disease. I'm looking into his family tree as well; which has a history of colon cancer and other bowel problems. Who knew that knowing about you family tree could be benefitial in more ways than one?

    Although I was only recently diagnosed with this I have learned tons about CD and I'll be happy to answer any questions.

    Meghan, IN

    Interstitial Cystitis
    Irritable Bowel Syndrome
    Gastroesophageal Reflux Disease
    Endometriosis
    Fibromyalgia
    Restless Legs Syndrome
    Celiac Disease
    Pelvic Floor Dysfunction
    Neuropathy in legs
    Attention Deficit Disorder
    Temporomandibular Joint Disorder
    Iron Deficiency Anemia
    Last edited by mganstin; 04-25-2007, 04:43 PM.

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  • tabasco32
    replied
    yes it sounds to me that you definitely carry the gene for celiac, gluten intolerance. A blood test or biopsy doesn't really work and rule out celiac. Being on a gluten free diet is the only way to go. And if you feel better on it then I would stick with that. Isn't it terrible enough with IC that there is also celiac and ibs and candida. That is whats going on with me right now. ugh. I am sooo restricted. Remember that most foods have certain hidden ingredients you need to know about, like natural flavors, malt, modified food starch and so on. If you do have celiac which may be true remember not a crumb of bread because that can react to your gut and damage it in the long run.

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  • jen74
    replied
    Hi there.
    First off, they cannot diagnose celiac's or even tell if you have it through a colonoscopy. To diagnose it, they have to take a biopsy of the small intestines while doing an upper endoscopy.

    And yes, celiac's disease can be heredity, but people can also get it even they have no family members with it. I am glad the diet is working for you. I was told by my naturopath doctor that it is a healthier way of eating in general.
    Jen

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  • sacausa
    replied
    oh, I had an endoscopy with the colonoscopy....

    thanks for that website it answered a couple of my questions....

    I also went on http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

    and it's interesting because on their list of symptoms I noticed a couple of other things that was weird in the last couple of months like I got the white sores in my mouth and I had no clue where they came from... and I've had a lot more gas... and weight gain (30lbs in the last 6 months)

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  • sacausa
    replied
    Well, I'm thinking I may have it... My grandmother (mom's mother) was diagnosed with it and is gluten free, and my mom also probably has it (she has the same symptoms)....... they've both also had to get B12 injections etc., for that type of anemia that results from it...

    After I eat anything with gluten my entire abdominal region bloats (massively, I seriously look pregnant!).... and I've been experiencing diarrhea off and on, which is also directly related to gluten....

    The thing is, I had a colonoscopy when I was 15 (4.5yrs ago) and the gastroenterologist said that I didn't have it....... could it be possible that there just wasn't enough damage to my intestines yet?

    I'm seriously suspicious that I may have this because when I was 13yrs old, I started having severe health problems like autoimmune hashimoto's thyroiditis etc... and my mom put me on an "immune system makeover diet" that excluded gluten, dairy, and sugar and I felt A LOT better on it! It was probably one of the healthiest times in my life....

    Is Celiac hereditary at all?

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  • Kara29
    replied
    I have Celiac Disease

    I have Celiac Disease real bad as does my Mother. I've been gluten free for a year now. I got used to it as I had no choice. I'd be more than happy to answer any questions you might have.

    For more information about Celiac you can take a visit to the Celiac Disease Foundation: http://www.celiac.org/cd-main.php

    Kara

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  • Sarahbear
    replied
    My aunt and 2 other cousins have it. I know some stuff about it.

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  • tabasco32
    replied
    I can't have gluten it makes me sick. I get fatty stools and stomach pain real bad.

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  • Momelf
    replied
    I'd be interested in discussing this also. Also am gluten-sensitive. Just got my first package of tapioca flour to make a cheese bread made with parmesan. Can either of you tolerate parmesan? I hear that the canned cheese may be tolerable, but not the chunk.

    Comments?

    Darlene

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  • jen74
    replied
    Hi There.
    I dont have celiacs disease, but I know alot about it. I do however follow a gluten free diet (the celiacs diet) because I know that I am sensitive to gluten. I can try and answer any questions you might have regarding celiacs disease. Maybe someone else on here also has some knowledge as well and will chime in.
    Jen

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  • sacausa
    started a topic not sure where to post this... Celiac Disease?

    not sure where to post this... Celiac Disease?

    Does anyone have Celiac Disease? I have a quick question!
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