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Everyone Else

    • magzpatience

      I am 53! And loving it. Anyone else??

    • Firebucket

      51! Diagnosed last December after going to a bazillion doctors and bazillion copays.

    • Tina

      I was diagnosed at 56. I was fairly asymptomatic ( although in retrospect I realize that I really did have some symptoms although none were gastro). I was tested to find out why I was losing bone density despite being on prescription meds for osteoporosis. The doctor was trying to “rule things out” — and Celiac wound up being ruled in.

    • lcgraham

      I feel like the dinosaur here (“Celiac Park?”). Just turned 57 last month, diagnosed at 51 while getting an EGD for GERD and my highly recommended everyone over 50 colonoscopy for polyps and signs of CA (colonoscopy negative, found a hiatal hernia and the celiac disease was an incidental)(good thing too, my mother, brother, sister got tested for CD and came back positive, then tested my brothers grandson, positive, maternal aunt (mothers younger sister) – positive; maternal aunts eldest daughter – positive)(others are refusing the test)

      My Primary Care provider depends on me on keeping her up to date on Celiac Dz.

      • Brogge

        I’m still trying to navigate through this website hoping I’m trying this correctly. It is so very hard to find support I am 52 and most people think the whole gluten-free thing is a fad. It is very frustrating. But I’m finding that more and more family members are having similar issues and are all cutting out gluten and figuring out that it is causing problems as well. The funny thing is the only problem I had was being anemic. I feel knowing is a blessing. I have other family members who have all kinds of illnesses from being diabetic to thyroid issues and all of them since going gluten-free are off their medications.

    • AngieInCA

      54 here so I guess we fall in the “Everyone Else” category (LOL). Diagnosed at the age of 47 after a lifetime of illness, rashes and fatigue. I have been gluten free for 7 years. I am fortunate to have a loving supportive husband so our home is a G/F home and he gets his gluten elsewhere.

    • NancyG

      Hope there’s room for me in this boat. :) I’m 55 and don’t have an official diagnosis of celiac disease, but there is no doubt that I am severely gluten-intolerant.

      In my late 40s I began having nearly constant low-level nausea, which I chalked up to shifting hormone levels, and frequent stomach pain. (Lesson learned: Don’t blame everything on menopause!) The muscle cramps I’d suffered since I was a teenager became more frequent and were joined by numbness — I would stand up and have to wait a few minutes for my feet to wake up before I attempted to walk. I also had joint stiffness that I thought was osteoarthritis setting in early. Oh, and I lost about 10 pounds without trying or wanting to, and looked so sick that my family thought I must have an eating disorder. I knew I did not, which was really scary; I was eating normally but losing weight.

      A few months before I turned 50, I was at a family gathering, snacking on pretzels and drinking wine while waiting for the real food to be served. When the (breadcrumb-)stuffed mushrooms came out, I ate a few of those. Then I suddenly announced that I had to go lie down immediately, and I made it to my sister’s bed before I passed out. A few hours later, I woke up and threw up. Naturally, everyone assumed that I’d had too much to drink, but again, I knew the scary truth — I’d had only two-and-a-half glasses of wine, and I had drunk way more than that in my day without coming close to passing out.

      I started Googling my symptoms (of course!) and kept landing on sites about celiac disease. It seemed so unlikely; I thought it was very rare, and I’d never known anyone who had it. Yet my symptoms were there in the long list of possible symptoms of the disease. I thought “What the heck?” and decided to experiment by cutting out gluten for a short time. A few days later, I realized that my constant nausea had disappeared. As I extended the experiment, I began feeling not perfect, but much better than I had felt in a long time.

      When I had a celiac panel taken a couple of months later (I was still eating gluten-free), it came back negative. However, my other bloodwork showed that I was anemic, with almost no iron stores (ferritin level of 2!), and deficient in vitamin D. My doctor said, “Your body has already told you what you need to know.” When I asked him if he thought I should do a gluten challenge and be tested again, he said, “I would hate to see you make yourself that sick again.” He did ask if I wanted to have an endoscopy, and I said no (a decision I sometimes regret).

      That’s my long story. Here I am, five years gluten-free and doing much better. A few years back, I joined my local Celiac Meetup Group for moral support, and I am happy to have this community for more of the same. Thank you, Gluten Dude, for bringing us together and for all the good you do!

    • sgawell

      Hello all! I am so glad I found this website during my search for Celiac information.
      I am 50, divorced, an empty nester who has been caring for an ailing father for the past few years and I just found out last week I have Celiac.
      I was symptomatic with bloating, nausea and vomiting, severe abdominal pain and have spent the past 6 months getting test after test to try to nail down the cause. Meanwhile, I have been seeing my primary, a spine specialist, etc to manage my low back, bilateral leg, arms and hands pain, tingling, muscle spasms, etc. I have arthritis in my lumbar spine but they kept saying it can’t be causing you that many symptoms. Now, I realize the gluten may be the culprit for some of it.
      Going gluten free is going to be difficult for me to adjust to I just know it. I am seeing a nutritionist in two weeks to help me modify my diet.
      Do any of you have any tips on how to even begin going gluten free? I started reading labels of everything in my house. If it says “may contain wheat” does that mean it may have gluten?
      Any help you can give me will be greatly appreciated!

    • NancyG

      Welcome! Yes, anything whose label says it “may contain wheat” may contain gluten.

      Beyond Celiac (formerly known as the National Foundation for Celiac Awareness) has a downloadable guide to getting started, which you may find helpful. It includes a section on food labeling (starting on page 24):

      Also, read Gluten Dude’s series of How to Go Gluten Free posts. He covers the mental and emotional aspects of the process as well as the physical and practical ones. Part 1:

    • Kristen

      Hi everyone, I am turning 53 next month. I have had celiac disease for a while. I have not been tested, but have suffered since 2011 with being bloated and sick every time I eat anything with gluten in it. Over the years, I have just managed to stay away from it. However, sometimes I failed to avoid eating something made with gluten. In the last 2 years it escalated to much more then just not feeling well for a couple of weeks or months. About 2 plus months ago, I ate a taco made with hand made taco shells. It is difficult to tell the difference by looking at them. I was so sick a week latter that I couldn’t go to work. Since then, I have experienced everything and then some. My doctor has been really nice trying not to tell me that when celiac hits, I basically become sort of wacky (depressed, emotional) and with my hyper-thyroid ( causes anxiety), wow what a mess. Anyway, here I am 2 months later and the immediate symptoms of stomach pain is gone, my head is clearing a little ( how embarrassing). I still get bloated every time I eat, I have a rash on the back side of my head and it is now moving down my neck and I am still miserable.

      I wish my symptoms only lasted a couple of weeks. Any ideas?

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