Anyone else with celiac?

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kramrn77
kramrn77 Posts: 375 Member
in Food and Nutrition
I was recently diagnosed with celiac disease, I've struggled with some back and forth regarding gluten consumption, but my last bought of illness may just have put the last nail in the ciffin of my bread addiction.

Anyone else out there with celiac? I would love to have some support with this.

Replies

  • bevaroo117
    bevaroo117 Posts: 7 Member
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    I'm waiting on blood test results for Celiac... do you mind if I ask what symptoms you had leading up to the diagnosis?

    I discovered a serious gluten senstitivity after doing a Whole 30. I highly recommend doing one to kick your bread addiction. I was about to cut gluten out of my life forever until my doc asked me to do a "gluten challenge" so I could test for celiac's.
  • jvs125
    jvs125 Posts: 223 Member
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    Well my celiac tests came back negative but I cut gluten out 7 years ago because it caused me migraines, psoriasis, digestive issues, lack of energy, and other fun problems like that. Really I'm surprised my blood tests were negative but then again, my doctor at the time didn't believe me I had trouble so I was only tested when I changed doctors, 3 years after cutting it out.

    Anyway all this to say that I'm not celiac, but I have plenty of experience with diet restrictions (recently had to cut out dairy as well and now reintroducing lactose free products).

    If you need help and support, I'm here.

    I remember how it was difficult at first, but after a few years, I definitely don't miss it anymore - even when other around me are enjoying their pasta with garlic bread. It eventually just becomes part of life and there are plenty of delicious stuff to choose from. And I definitely don't miss how crappy I was feeling all the time.
  • bevaroo117
    bevaroo117 Posts: 7 Member
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    jvs125 wrote: »
    Well my celiac tests came back negative but I cut gluten out 7 years ago because it caused me migraines, psoriasis, digestive issues, lack of energy, and other fun problems like that. Really I'm surprised my blood tests were negative but then again, my doctor at the time didn't believe me I had trouble so I was only tested when I changed doctors, 3 years after cutting it out.

    I'm not surprised you tested negative- unless you have gluten in your system the blood tests will always be negative. I'm surprised your doctor let you test without putting gluten back into your diet. That's why I'm doing this "gluten challenge," to make sure I have gluten in my system before getting the blood test.

  • canadjineh
    canadjineh Posts: 5,396 Member
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    After 7 years of serious GF eating you shouldn't test positive. You likely won't show small intestine problems by this time either. It usually takes adults up to 5 years to get healing in the small intestine. So you may very well have celiac disease, but I certainly wouldn't re- gluten just to get a yes. Your health is way more important - unless you can get some sort of medical coverage by having a positive. In that case it could be worth it... your choice though. There's a Gluten Free community group - there are quite a few of us, lots with celiac and lots with other types of gluten sensitivities. You'll get good support and advice there.
  • bevaroo117
    bevaroo117 Posts: 7 Member
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    Canadjineh, how do I find the Gluten Free group? Can you post a link?
  • kramrn77
    kramrn77 Posts: 375 Member
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    I had a lot of GI problems- including severe bloating and cramps that would almost make me cry (I would seriously rather weather another birth, and I was in labor over two days). When I'm good I also notice less nausea, heart burn, migraines and I don't have PMS that causes muderous thoughts towards my spouse and co workers.
    I've been doing better, but still leaking gluten into my diet due to being a home health nurse and having to get way too many meals through the drive through. But I am hoping to go back into the hospital setting soon where its easier to pack your own lunches.

    I would LOVE more support! There are plenty of gluten free products, but I am unsure of where to start going back to scratch cooking. I mean, swapping noodles is a no brainer, but making roux is daunting.
  • jvs125
    jvs125 Posts: 223 Member
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    bevaroo117 wrote: »
    jvs125 wrote: »
    Well my celiac tests came back negative but I cut gluten out 7 years ago because it caused me migraines, psoriasis, digestive issues, lack of energy, and other fun problems like that. Really I'm surprised my blood tests were negative but then again, my doctor at the time didn't believe me I had trouble so I was only tested when I changed doctors, 3 years after cutting it out.

    I'm not surprised you tested negative- unless you have gluten in your system the blood tests will always be negative. I'm surprised your doctor let you test without putting gluten back into your diet. That's why I'm doing this "gluten challenge," to make sure I have gluten in my system before getting the blood test.

    Yeah, I had to eat gluten meals twice per day for 3 weeks straight prior to testing to make sure I had gluten in me. I felt like crap the whole time, and also put on 8 pounds even though all I could eat was two small sandwiches per day, and felt too bad to have anything else fir the rest of the day... So.. Test still came back negative but I will not touch the stuff.
  • redraidergirl2009
    redraidergirl2009 Posts: 2,560 Member
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    My doctor told me to try it because I was diagnosed with ibs along time ago and still having the same issues daily. I tried going GF and felt my ibs symptoms almost completely vanish. She said keep it up if it helps. I don't think I'd go back to gluten just to see if I have an allergy or celiac. It's better if I just pretend I do because that's probably what it is. It's really hard to eat out due to cross contamination though:( but otherwise it's easy to make your own gf food.
  • Original_Beauty
    Original_Beauty Posts: 180 Member
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    I have just been diagnosed celiac (nearly a month ago)
  • pwtaa
    pwtaa Posts: 18 Member
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    I was diagnosed a year and a month ago. It has been a learning experience for sure. Now that I have that under control I find my weight creeping back up. Don't have as much IBS so I don't just keep it off that way. With Celiac I'm tired a lot and have had to have Iron infusions. My intestines won't absorb it orally either through the food or the pills. I am feeling a little better since all of that but am having trouble getting enough energy to get back to my workout obsession that I had when I lost the 1st 70 lbs. Getting very strict with my diet again...I mean outside of Gluten. It's just gone.
  • kramrn77
    kramrn77 Posts: 375 Member
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    I haven't been as strict with my diet as I should- both in regards to gluten and health. Its harder since the rest of the family isn't gluten free. I don't cook with gluten anymore, but hubby will go out and bring home fried chicken, mac and cheese and bread for dinner and wonder why I get huffy. I mean, its only been 8 months since my diagnosis.

    I can always tell if I've been glutened a tad too much- I feel like I've been run over by a Mac truck.
  • twinkfran
    twinkfran Posts: 54 Member
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    No but I Have Hashimoto so avoid gluten and also have a mild lactose intolerance (on top of being veggie). I have good and bad weeks and I kick myself for the bad weeks as I get so tired and bloated.
  • pwtaa
    pwtaa Posts: 18 Member
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    I don't know where you are from Kramrn but one of the best places to find Gluten free substitutes is Big Lots or where ever you can find Bob's Redmill. Walmart is starting to carry a really good line of Gluten Free products as well in the Great Value line.
  • Original_Beauty
    Original_Beauty Posts: 180 Member
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    I was diagnosed 1 month and 1 day ago. Feel free to add me.
  • kramrn77
    kramrn77 Posts: 375 Member
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    Walmart is a no go here- barely any selection at all. But we are about to move to a bigger city and they have a Sprouts. Going to be an adventure cooking for the fam this Thanksgiving and Christmas!
    -
  • Katenheimer
    Katenheimer Posts: 8 Member
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    I have Celiac’s and am asymptotic so I need support in being better about not eating it cause I can’t feel the results right away. Please help
  • 23rochelle23
    23rochelle23 Posts: 269 Member
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    Hey sweets - this is a really old thread you’ve resurrected - I’ve got celiacs however I’m very symptomatic with it which in and of itself is enough reason not to (think lying on floor of bathroom vomiting for hours, migraines, neuropathy, sleep disturbance etc). Particularly now I’ve been gf for many many years - depending on how long you’ve been gf you might actually find your symptoms worsen once you’ve stopped having it for a long time.

    The real issue for you is the long term effects - malnutrition, malabsorption, bowel/lymphoma cancers, fertility issues....

    Have you seen a stoma bag? The thought of having one may be enough to put you off eating gluten (certainly would be for me) let alone thinking about all the other possible outcomes of cancers.

    What type of diet do you follow? I presume you’re actively endeavouring to either lose, maintain or gain weight seeing as you’re on mfp?
  • sinnybri
    sinnybri Posts: 1,174 Member
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    As someone with a stoma, I find your comment disgusting! My stoma gave me back my life after a long battle with a chronic illness. I’m not ashamed of it and it I have to say, I’d be surprised if you have ever seen a stoma bag. It would do you no harm to be a bit mindful before you talk about any disability.

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