I suspect I have Celiac disease

topic posted Mon, November 26, 2007 - 8:04 PM by  ***Candace***
I'm going to the doctor tomorrow to be tested for Celiac disease. I'm scared to death he is going to brush me off as a hypocondriac (sp?) I constantly get sores in my mouth , upset stomach, heart burn, bloating, etc.......... . I am also on Welbutrin and Effexor for depression and anxiety. I have had stomach problems my entire life. I also have joint pain in my wrists, knees, and ankles. I just want to start feeling better. How long did everyone take to get a diagnosis?
posted by:
***Candace***
Columbus
  • Re: I suspect I have Celiac disease

    Mon, November 26, 2007 - 8:20 PM
    It took me a REALLY long time to be diagnosed accurately. It was actually my naturopath who diagnosed me. Nothing like feeling sick for years to make someone feel like a hypochondriac! I hope that you get the help that you need to start feeling better. Keep us posted!
    • Re: I suspect I have Celiac disease

      Wed, November 28, 2007 - 6:42 PM
      Thank you.............that's exactly how I felt Tuesday when I went to my doctor, a hypochondriac. I actually printed off a list of symptoms for Celiac and gave it to him. I was suppose to get my results back today...........but nothing. I'm actually hoping that I have this diagnosis, sounds weird I know. I just want to get better, I'm sick of the mystery. I will keep you posted.:)
  • Re: I suspect I have Celiac disease

    Sun, February 17, 2008 - 1:09 PM
    I self diagnosed myself... read an article on Celiac, checked off a bunch of symptoms, remembered some stuff about my mom (genetics) and decided to go gluten free for a week to test it out..... and never went back! Biggest thing, I was able to toss my Wellbutrin after 3 months. No more migraines, no more wierd rashes. I say, if in doubt, why not go gluten free? For me, it was pretty easy, since I was never a big bread eater (wonder why.... instinct, I guess!) I stick with Mexican (corn tortillas and masa) and Sushi (sans fake crab and soy sauce) Sprouts and salad, salmon, tuna, nuts, fruits and kombucha. I have been a semi-vegetarian and health-foodist for a long time, so the change was not too traumatic. In any case, cutting out the obvious sources of wheat and gluten will cut out a lot of junk food, and improve your health, even if you don't have it!
    • Re: I suspect I have Celiac disease

      Thu, February 21, 2008 - 9:25 PM
      I am going to have an endoscopy done on Monday. The blood tests came back negative. I had a colonoscopy 2 months ago and was told that part of my small intestines was flattened. He can't explain to me why. He was actually pissed off at me when I brought in a symptom check list from a Celiac.org website. He went on a rant and told me that I didn't have Celiac and that the blood tests were 100 percent accurate. He went onto say that he was sick of people going on the internet and self diagnosing themselves. He took my symptom sheet and said, "What is this, everyone has these symptoms!". By this time I was crying. He said he could do an endoscopy on me, but that would be it. He told me I was a mother of 4 and that stress was causing my symptoms. It was awful!!!!:( I am also on Welbutrin and Effexor. I also have thyroid problems , but they refuse to put me on anything because they consider it subclinical. After Monday, if they can not explain to me what is going on, I will have to take matters in my own hand. Thank you for your response.:)
      • Re: I suspect I have Celiac disease

        Fri, March 7, 2008 - 2:36 PM
        Candace, have you tried going on a gluten free diet? Sometimes the cure can prescribe the ailment rather than the reverse. If you try it for 30 days and you feel better and are willing to get another work up to determine if that part of your colon is still flattened, then you'll know you have some sort of intolerance to glutins even if it is sub-clinical.

        I'd be happy to pass along a few recipes to get you started.

        -K
        • Re: I suspect I have Celiac disease

          Mon, March 10, 2008 - 4:39 PM
          Thank you.........My test came back negative (biopsy). I still feel sick . I would love some recipes.
          • Re: I suspect I have Celiac disease

            Sat, March 15, 2008 - 12:55 PM
            Candace, my blood test came back negative. Doctors rarely ever explain the difference between an allergy and an intolerance. With an allergy, you develop antibodies. That's where the blood test comes in handy. If you have an intolerance, there will be no antibodies, therefore, you will not be properly diagnosed. I was tested for celiac, and also food allergies in general. The results were negative. I thought I was losing my marbles. My boyfriend's mother, who has celiac, said my symptoms sounded just like hers. I finally went to see a nutritionist who put me on an elimination diet for 10 days. It changed my life. For the first time ever, I will go weeks, sometimes even months without feeling bad. I also cut out soy, which always made me very gassy. My mood swings & depression went away, my acne cleared up, (I'm 40), the bloating, hearthburn, acid reflux and gas are gone. I may not be allergic but I suffered just the same all those years. I'd recommend going on a gluten-free diet for a couple weeks, (do your research because gluten can come in many forms and be in many things you'd never have expected it to be), and get a doctor who listens and respects you.

            Good luck. Whatever you do, don't give up. You shouldn't have to suffer the rest of your life.
            • Re: I suspect I have Celiac disease

              Sun, March 16, 2008 - 9:53 PM
              Just a follow up to what you said about gluten being in many things one might not expect...here are some I've discovered:

              the adhesive on postage stamps, certain glues, hair coloring products, a slew of shampoos and other hair products and even some skin products!

              -K
              • Re: I suspect I have Celiac disease

                Tue, March 18, 2008 - 12:01 AM
                -K wrote: ...here are some I've discovered:
                >

                Additions:

                Any food product that has listed in the ingredients "Spices", "Modified Food Starch" or "Carmel Color."

                Wheat or wheat gluten is often a filler or flavoring agent in many spice combinations and manufacturers aren't required to list them. Modified Food Starch is often corn starch, but because manufacturers aren't required to specify, and their recipes change, it could have wheat included or wheat contaminated contents. Unfortunately this blocks out a fair portion of foods on the market. But that's not such a bad thing because they're all processed foods you'd probably be better off without eating anyways. Carmel coloring is most often derived from barley malt but some manufacturers will list the source. Common opinion is that carmel colorants in US products are gluten-free, but a lot of manufacturers import their ingredients and aren't required to report it (like say in in a complex product where it is a sub-ingredient to the overall product, like carob chips in a granola bar) , so it's a crap-shoot if it's safe unless the source is listed.

                But with new labeling standards, and market push, they are getting much better at it. And, consequently, the list of foods we can eat expands on a daily basis. It's hell feeling afraid of your food.

                I've recently gotten my polite, "can you eat this?" reply down to a brisk two sentences for the unsure and unaware:

                "I can eat whole foods only - think basic, fresh, unadulterated ingredients. If it's a processed food or food product, I probably cannot have it."

                Someone actually asked me the other day if I can have olive oil, so I came up with the above.

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