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13 Comments

  1. 1

    Derek

    Your story really touched me. my symptoms did not get as severe as yours until my 20s. During college I had diahrea 3 to 5 times a day. I had chronic migraines as well. It didn’t really get really horrible until my first job and I had just left home. I started having severe balance problems, and it felt like my brain was in slow motion. It’s a miracle I wasn’t fired. I began having severe abdominal pain and wicked acid reflux. I ended up having to move back in with my parents at the age of 26 because I couldn’t function anymore. I went through all of the testing as well and they never found anything. I was diagnosed with IBS and GERD. The balance issues and diahrea continued for the next 12 years. I spent various times talking with my PCP trying to figure out what was going on. I was tested for c Diff a couple of times due to the severity of the diahrea. I kept having abnormal liver results as well with no known cause. Finally, after years of misdiagnosis I had a new job at a new company with different insurance. All new doctors. My symptoms had gotten to the point where I was in agony. I was sent to a GI specialist, his time after numerous tests they finally found something. I was so grateful. They diagnosed me with Celiac and I am now GF 18 months and am symptom free! Follow up testing showed I had low vitamin D and osteoporosis. My teeth have been falling apart as well. I had 6 cavities the year before my diagnosis and 9 the year of. I look back and feel like I was cheated out of my 20s. The one thing I am so grateful for is that no one ever made me feel like it was all in my head. Everyone around me was extremely concerned.

    Reply
    1. 1.1

      Derek

      It occurred to me I didn’t relay my lowest moment. On my wedding day with future wife waiting for me to get up to the altar so that she could do the procession up, I was stuck in the bathroom doing what undiagnosed Celiacs do on a routine basis.

      Reply
  2. 2

    Jennifer

    How horrible to have lived through all that, but so wonderful for you to share. You may be helping others by doing so. My question is…why, with all of the new information and research going on, is testing for Celiac Disease so far down a doctor’s list??

    Reply
  3. 3

    Donna

    I can’t recall the last time I read something that hit home so deeply with me. Thank you so much for sharing your story, for opening up and allowing us to see inside your pain and struggle. I’m so glad you’ve found your happy place after all these years.

    Reply
  4. 4

    Susan

    I had a very similar experience to this woman. I went roughly 20 years before having a holistic doc tell me (within 15 minutes of speaking with me about my multitude of symptoms) that I needed to eliminate gluten from my diet. I never got tested. I just cut out all gluten. Within 2 weeks, I felt like a different person. I refuse to purposely eat gluten again, so I won’t be having a blood test or biopsy. Just feeling human again is good enough for me. Those years of not knowing why I was always sick were truly awful though.

    Reply
  5. 5

    MsKat

    Her story resonates with me. in many ways. I was diagnosed 10 years ago, I am now 48. By then the disease had done a lot of damage to me. Migraines, bad teeth (even though until adulthood I was monitored brushing and flossing I had fillings in all my back teeth, even my baby teeth, and my parents didn’t get me a lot of junk food). Pain in my feet, my back, hips. Feeling nauseous most of the time growing up, so much so that I’d learned to accept it as normal. Got a stomach virus every year; sometimes it was so severe I burst blood vessels in my eyes. Days of diarrhea, knowing where every bathroom was wherever I went, and having the ability to find one quick in unfamiliar places. Things smelling like dying cells coming from me. By the time I was diagnosed i really thought the allergist was going to tell me I needed to see my doctor and get my affairs in order. I had hives frequently with no apparent cause, so my doctor sent me to get tested; along with celiac disease I am allergic to about 45 other things. she didn’t even have to do the biopsy to know, I had just about every celiac symptom there is. Now, although I feel much better off the gluten, when I am accidentally glutened the reaction is worse. I have few teeth left because they simply dissolve over time no matter what I do; I have a partial but will need dentures soon. My hair has thinned too early. Other side issues of gluten and other allergies, such as gallstone, kidney stone, low blood pressure, I have them all. I am glad I Was finally diagnosed, because my quality of life is better, and because living with it undiagnosed is pure torture, especially because many doctors check for everything else but celiac, not because they are avoiding it, but because they are used to not looking for it. So not only do we suffer all the time, but then we begin to think we are crazy and it’s in our heads, so we suffer in silence. She is fortunate-her mother did apologize and acknowledge her illness once diagnosed; my family prefers to believe mine doesn’t exist.

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  6. 6

    Daisy

    So much of this is familiar. I was fortunate that I made it through most of my childhood with “just” stomachaches (we ate very little processed food growing up, which is my only explanation). Once I hit college with pizza and beer, the symptoms started. Then the years of doctors (including board-certified gastroenterologists) telling me I had “atypical IBS” because my symptoms (vomiting, hot and cold sweats, crippling stomach pain) really didn’t fit IBS but they had no idea what I had. Several doctors told me it was just stress or that I wanted attention (trust me, I have better ways of getting attention than vomiting). At the time, I did not connect my vertigo, chronic anemia, and hives/boils to my stomach issues, just thought they were more stress-related issues. When I finally self-diagnosed and found a doctor who specialized in celiac, she reviewed my records and said, “I almost don’t need to test you, everything you’ve been telling the doctors all along shows me you have celiac.” I consider myself very fortunate to have been diagnosed and to have regained my health on a gluten-free diet. The thing that makes me the saddest is doctors who have no clue and make us feel like we are the crazy ones.

    Reply
  7. 7

    Hillary Kingsbury

    I can so relate to this! I am 23 and living in a nursing home because of my medical complications due to undiagnosed celiac. It sure is hell!

    Reply
  8. 8

    KateJ

    I think I had it for 30 years before diagnosis, at least.
    A younger cousin was diagnosed when I was about 8. Mum asked the doctor, who said it wasn’t possible, because it was always diagnosed before a child turns two.
    So, with coeliac disease ruled out, I had unexplained: mouth ulcers, anaemia, pms, ibs, rheumatoid arthritis, condromalacia patellae, tooth enamel deficiencies, post infection malabsorption syndrome, chronic fatigue (and probably hypochondriac) on my medical history.
    Then I got a tummy bug. After a fortnight (with no improvement) I went to the doctor. IBS, said he. Have some tablets. I’ve taken those, said I, maximum dose for 2 weeks, they don’t do anything. Ah yes, said he, you need to take more of them, the real maximum dose is much higher, have lots.
    A few days later I had run out of pills, and was still losing 8ounces every day, so I went back. I feel terrible, said I, and I can only work because my desk is nearest the loo. IBS, said he, take your pills. But the pills don’t work, said I, I’ve taken all the pills you gave me. Oh, said he, maybe we’ll do a blood test.
    A week later, and another 4lb lighter, I see him again. You are anaemic, said he, probably the IBS, but I want to do another blood test.
    A week later (and another 4lb lighter) I tried to speak to him. But his dragons protected him fiercely. You cannot speak to the doctor until your blood test results are back, said they. We don’t know why you are worried, it’s only IBS.
    Another week went by, and the same thing happened. So I went to the pharmacy to buy a cork.
    You do look ill, said she, come through and tell me about it. When she had finished listening she said: have you heard of coeliac disease? Stop eating gluten, and join Coeliac UK. So I did. And I felt better.
    A few days later, the doctor called me. Have you heard of coeliac disease, said he?

    Reply
    1. 8.1

      MsKat

      Sometimes, doctors make me sick. Figuratively, and literally. Glad you finally have a diagnosis. Took me 38 years undiagnosed, with all sorts of similar maladies-my favorite was the tooth enamel thing…parents watched me brush and floss, had dentist visits every 6 months as recommended, still had fillings in both my baby teeth and adult teeth, yet I was the horrible person to blame for it all, because I must not have been brushing my teeth or caring for them. In any case, I hope you have since moved along to another doctor now that you have your diagnosis, and perhaps an allergist as well, they are sometimes a great help.

      Reply
    2. 8.2

      Cindy

      I know this is an old thread but I’m only just reading it now and I love how you wrote your post, the said he’s and said she’s were funny as. I had this real mental picture of a doctor going, here take these pills, in such a condescending way as they do too. If this was facebook, I would be liking the shit out of your post

      Reply
  9. 9

    Jules

    Reading that was brutal. I’m so happy to have a reason for all of the years I spent sick, exhausted, miserable, and emotionally wrecked… But it also really bums me out to wonder what my first 20 years of life could have been if I’d never, ever experienced gluten.

    Reply
  10. 10

    Danielle

    This really resonates with me. I was diagnosed a little over 6 months ago after 4 years of chronic pain in my lower extremities, along with numerous visits to specialists, and 2 surgeries. Not ONE of the doctors I saw suggested celiacs, it was my own mother who suggested I get tested. I am still in so much pain, but finally my antibody levels are falling. Reading her story gives me hope I can feel better again, but I am so angry that doctors let this disease wreak havoc on my body for so long.

    Reply

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