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

    Does anyone have Celiac Disease? I have a quick question!
    current meds:
    cytotec 200mcg twice daily
    toprol
    allegra

    ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

    dx: hashimoto's thyroiditis 1998
    dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
    dx: endometriosis 2003
    dx: innapropriate sinus tacchicardia 2005

    meds tried but failed:
    elavil (6months)- severe tachycardia
    elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
    a bunch of others



    Me and my best friend's baby (also my Godson!)

  • #2
    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

    Comment


    • #3
      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

      Comment


      • #4
        I can't have gluten it makes me sick. I get fatty stools and stomach pain real bad.
        not yet dx with ic-diagnosing myself as of aug 2006
        diagnosed ic-october 5 2006(huh just what I thought)

        Charcoal
        cod liver oil (for vitamins a and d)
        bladder is not getting worse but maybe better
        diagnosed ibs-september 27, 2006
        don't know if it's ibs or some other underlining condition. hair loss, weight loss, constipation
        all this even though I eat.
        Mercury toxicity with Candida Albicans
        Realy toxic and sick
        Dental almagams removal and chelation for heavy metal toxins and candida cleansing as soon as fillings are out
        had catscan, ultrasound, colonoscopy
        Matthew 21 verse 22: jesus quotes"and all the things you ask in prayer, having faith, you will receive."

        I eat to live, not live to eat.

        Comment


        • #5
          My aunt and 2 other cousins have it. I know some stuff about it.

          Comment


          • #6
            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
            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:
            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

            Comment


            • #7
              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?
              current meds:
              cytotec 200mcg twice daily
              toprol
              allegra

              ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

              dx: hashimoto's thyroiditis 1998
              dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
              dx: endometriosis 2003
              dx: innapropriate sinus tacchicardia 2005

              meds tried but failed:
              elavil (6months)- severe tachycardia
              elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
              a bunch of others



              Me and my best friend's baby (also my Godson!)

              Comment


              • #8
                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)
                current meds:
                cytotec 200mcg twice daily
                toprol
                allegra

                ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                dx: hashimoto's thyroiditis 1998
                dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                dx: endometriosis 2003
                dx: innapropriate sinus tacchicardia 2005

                meds tried but failed:
                elavil (6months)- severe tachycardia
                elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                a bunch of others



                Me and my best friend's baby (also my Godson!)

                Comment


                • #9
                  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

                  Comment


                  • #10
                    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.
                    not yet dx with ic-diagnosing myself as of aug 2006
                    diagnosed ic-october 5 2006(huh just what I thought)

                    Charcoal
                    cod liver oil (for vitamins a and d)
                    bladder is not getting worse but maybe better
                    diagnosed ibs-september 27, 2006
                    don't know if it's ibs or some other underlining condition. hair loss, weight loss, constipation
                    all this even though I eat.
                    Mercury toxicity with Candida Albicans
                    Realy toxic and sick
                    Dental almagams removal and chelation for heavy metal toxins and candida cleansing as soon as fillings are out
                    had catscan, ultrasound, colonoscopy
                    Matthew 21 verse 22: jesus quotes"and all the things you ask in prayer, having faith, you will receive."

                    I eat to live, not live to eat.

                    Comment


                    • #11
                      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, 05:43 PM.
                      IC-Elmiron, Sanctura, Prosed DS
                      Endometriosis-Lybrel, Phenergan(for nausea)
                      Postural Orthostatic Tachycardia Syndrome-high salt diet
                      Chronic Fatigue Syndrome- supplement injections
                      Sympathetic Denervation of the Legs
                      Hypersomnia/Repetitive Intrusion of Sleep
                      TMJ Syndrome
                      Mild Scoliosis
                      GERD-Nexium
                      Intraepithelial Lymphocytosis
                      RLS
                      PFD-Tizinadine as needed
                      Fibromyalgia-Tramadol, Neurontin, Lidocane Patches
                      ADD-Provigil
                      Gluten Sensitivity Enteropathy
                      IBS

                      Comment


                      • #12
                        I don't have celiac, but a friend was diagnosed via a blood test.

                        Donna
                        Stay safe


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                        Comment


                        • #13
                          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

                          Comment

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