Anybody with celiac disease?

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I think I may have celiac disease.Does anybody else here have it?I'd like hear about your experience,like,what you eat and how did you discover that you have it?

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  • peachezncreme
    peachezncreme Posts: 60 Member
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    My sister is celiac. She was sick for almost a year before figuring out the problem. The symptoms she described to me were constant stomach pain, headaches and daily diarrhea. Her dr. finally did a blood test and it came out positive. So she started cutting out all gluten and within the first week, she felt better already. It has been about 8 months since she was diagnosed, and she feels great. She actually lost 25 lbs, not because she was trying or wanted to, though. It can be hereditary. I went and got myself tested just to see if I was at risk for developing it, and it was negative. If it turns out that you are celiac, don't worry. It will be tough, but it can be done, and many, many people live it everyday!
  • kels1120
    kels1120 Posts: 20 Member
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    I don't have celiac disease but I do have a gluten intolerance. Certain foods tend to give me intense stomach pains. For example, I can eat bread in small quantities, but cannot eat any kind of pasta or pizza dough because they give me crazy pains. It was difficult at first because I am Italian so I grew up with pasta served at most meals. However, after awhile I realized I don't even miss those foods anymore. For me it was kind of trial and error to determine which foods were causing me the pain. After realizing what they were, I eliminated them from my diet and haven't had any pain since.
  • theblondetrick
    theblondetrick Posts: 192 Member
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    Thank you both so much,this was helpful.
  • kklemann76
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    I have celiac disease, as does my father. I found out because my dad was urging me and my sister to get the blood test since it can be hereditary. I have it, sister does not. My symptoms were atypical and not the normal cramps and diarrhea, so I really didn't relate them to having celiac (and unfortunately that makes me really tempted to cheat on my gluten free diet). I was getting hemorrhoids and blood in my stool. (sorry to be graphic!)
    Anyway, it's annoying to be the "special snowflake" when you eat out with friends, but otherwise it's not that big of a deal. But I'm the queen of the burger with no bun and a hard cider instead of burger and beer.
    Feel free to send me any questions you may have about my experience as a gluten free person.
  • kcritter77
    kcritter77 Posts: 162 Member
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    I don't have celiac, but have a gluten intolerance. It causes inflammation in my body...only took me 35 years to figure that one out! Since I stopped eating gluten, I've been pain free for the first time in my life and my skin has improved immensely!
    Rice bread and rice pasta is awesome and if you eat mostly unprocessed foods, it's really easy to eat gluten free. I typically eat fresh fruit or celery and peanut butter for snacks, but you can get Clif Bars that are gluten free. Snack food was my biggest hurdle, but I figured it out fast!!
  • AndreaMerrill
    AndreaMerrill Posts: 24 Member
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    Blood tests for celiac are negative for me. My doctor told me with rashes I get thought I definetely have an intolerance. No real test for it though. I cut out most gluten. I don't stress about it in things like condiments/dressings, etc cause I don't use much. I did replace breads with gluten free ones as well as pastas. I was diagnosed with psoriosis as a kid and had 75 percent of my body covered. Now with an almost completely gluten free diet I am almost 100 % clear and have been for about 3 years. I can always tell if I try to sneak in something like a piece of regular bread cause I get red spots in areas I had severe psoriosis. There's no real good test for gluten intolerance that I know of. Good luck.
  • celebrity328
    celebrity328 Posts: 377 Member
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    I am gluten intolerant at least, unknown if its celiacs. My symptoms were anywhere from mental health issues, to painful stomach pains that wouldnt go away. I had "mystery" rashes show up all over my legs/hands and could never figure out what I was allergic to!

    My docotor put me on a Low carb diet for pcos and I cut out all the breads etc and one day I ate a slice of bread and thats when the symptoms showed up again :( I was so sick for 2 days. I have had gluten once or twice since July and the results are always the same... bad!

    Depending on your tolerance level you may be able to eat gluten still but in small doses. I myself have gotten sick from rice recently just because wheat was processed on the same machines! I know someone in my family who gets sick from a plate that has been cross contaminated :( it really depends on you.
  • ShannonKelliG
    ShannonKelliG Posts: 70 Member
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    I have cd diagnosed 6 years ago. I had been sick for over a year with severe abdominal pain, diarrhea, malnutrition, and inflammation. It was after my dad found out he had it that I was diagnosed and I've been gf since. I felt better within a few weeks.

    ETA I eat things that are naturally gf mostly. Meat, veg, fruits, rice, seeds, and nuts. On occasion I'll have gf bread or pasta, but it's easier and cheaper to go without.
  • Bumdrahp
    Bumdrahp Posts: 1,314 Member
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    I searched this topic, because I was unsure.. I think I may have celiac disease..

    The pain, is NOT FUN at all, and only happens after I eat bread. This morning I had an UNBEARABLE attack and I almost went to the ER, but the it stopped out of nowhere.

    SO, Im unsure if it's a gluten intolerance, or Celiac.. but the symptoms sound pretty similar... goodbye bread, goodbye beer.. it's been fun :sad:
  • LilMissDB
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    I searched this topic, because I was unsure.. I think I may have celiac disease..

    The pain, is NOT FUN at all, and only happens after I eat bread. This morning I had an UNBEARABLE attack and I almost went to the ER, but the it stopped out of nowhere.

    SO, Im unsure if it's a gluten intolerance, or Celiac.. but the symptoms sound pretty similar... goodbye bread, goodbye beer.. it's been fun :sad:

    If I could give you one piece of advice, it would be to get tested before you cut anything out. If you cut gluten out then the test result will be wrong and gluten intolerance is very different to coeliac disease. As some people have said, people with gluten intolerance will have an individual level of tolerance to gluten ie maybe you can't eat bread but don't need to worry about chips cooked in the same fryer as crumbed fish. For coeliac disease though, it is important to follow a strict, lifelong gluten free diet regardless of whether you experience symptoms or not.

    Also, you should get checked out in general if you are having these kind of symptoms. People often assume food intolerance but their could be something more serious going on (don't stress about it too much but better to be safe than sorry!)
  • lessofu
    lessofu Posts: 4 Member
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    Work with a gastroenterologist who has experience with celiac disease. They can tell you exactly what is happening and what the experience of their other patients with celiac disease has been and they can connect you with nutritionists and support groups. Then armed with information you can forge your way into designing a diet that works for you. There is a lot of misinformation on the internet. There are a lot more food choices now then when I was diagnosed 20 years ago.
  • Madaly320
    Madaly320 Posts: 112 Member
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    I have CD. I was diagnosed with IBS (Irritable Bowel Syndrome) 15 years ago and just learned to deal with it. It became habit to know where the restrooms were at all times. Looking back, I see how crazy it was. Literally, everywhere I went, the first thing I thought about was ok, where is the bathroom I can get to and it is a single bathroom, or a multistall bathroom, is it a bathroom that is visited by many people at once? or will I get to have some privacy?

    See? CRAZY! that is not normal.

    But about 2 years ago, I got a migraine, which was usual because I got them alot. But this migraine was so severe, I ended up in the ER by ambulance. My husband thought I was having a stroke and I was only 34 years old. I was paralyzed on my left side, speaking in gibberish and I couldn't see.

    It was a migraine, nothing else. I went to a neurologist who gave me pain meds and was sent on my way.

    After that, I began becoming foggy headed, light headed, dizzy. I was in bed by 8pm most nights with sever nausea. I couldn;t think straight, I couldn't say words correctly and I was stuttering often.

    I finally went to my primary dr who checked my thyroid levels ( I have hypothyroidism) and she also checked all my viatim levels. I was deficient in iron, B12 and Vit D. She sent me off to a GI dr who did a biopsy of my intestines and some blood work to test for CD, all of which came back Negative. I am deficient in IGA, which is what shows up if you have CD, so my blood work was void.

    She then told me to avoid gluten for 3 months. I had never felt so wonderful in my life. After 3 months, she told me to eat it. I lasted a week. I was soooooo sick!!!!!

    SO after that, she diagnosed me. I have been Gluten free since Oct 2012 and have felt SO amazing. NO MORE bathroom emergencies, unless I accidentally eat gluten. No migraines, no dizziness, no foggy head. Just wonderful living!
  • BigAndTallSection
    BigAndTallSection Posts: 46 Member
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    I have CD but I don't think that my symptoms fit the normal person with CD. I mean I go though bouts with the stomach and I have plenty of bathroom issues but since my pain is not so bad I still eat the wrong stuff. :( I do know that when I cut carbs I start feeling a noticeable difference. It it is just that I have rocks in my head sometimes and I will easily forget the better feeling. And for me it does not seem like it has to be an all or nothing approach for me to feel a difference. Just a reasonable cut back. But I am the wrong person to cut gluten out of a diet as I just love foods that come from that food group.
  • GospelofGrace
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    Be careful. As a person with CD you need to realize that unlike peeps with gluten intolerance your body is being damaged. Your rate of intenstinal cancers increase 4 fold.