Possible Celiac and my experience with doctors...

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Replies

  • RodaRose
    RodaRose Posts: 9,562 Member
    Celiac disease has a high genetic component so there are probably other family members who can benefit from your explanation of your experience.
    If you had gone to a dermatologist for a biopsy during the itching rash of "dermatitis herpetiformis" (do you have have pictures) you would have an official diagnose by now.
    Other wise it is up you and doctors to decide whether or not you have an official diagnosis.
    Good luck to you. <3
  • BeckaShine
    BeckaShine Posts: 29 Member
    RodaRose wrote: »
    Celiac disease has a high genetic component so there are probably other family members who can benefit from your explanation of your experience.
    If you had gone to a dermatologist for a biopsy during the itching rash of "dermatitis herpetiformis" (do you have have pictures) you would have an official diagnose by now.
    Other wise it is up you and doctors to decide whether or not you have an official diagnosis.
    Good luck to you. <3

    I actually went to the doctor whenever I had the rash for 4 months already and she was not concerned and only gave me a cream which didn't help. I decided for myself to change my diet otherwise I would have definitely had that done at the time.
  • GaleHawkins
    GaleHawkins Posts: 8,159 Member
    At the age of 65 I have figured out over the years a self diagnosis that fixes me is better then an 'officical' diagnosis. That is what I call eating for better health. If I can get at least as good results by changing my WOE as the doctor expects with Rx meds after an official diagnosis my brain knows to go with the former. :)
  • RodaRose
    RodaRose Posts: 9,562 Member
    BeckaShine wrote: »
    RodaRose wrote: »
    Celiac disease has a high genetic component so there are probably other family members who can benefit from your explanation of your experience.
    If you had gone to a dermatologist for a biopsy during the itching rash of "dermatitis herpetiformis" (do you have have pictures) you would have an official diagnose by now.
    Other wise it is up you and doctors to decide whether or not you have an official diagnosis.
    Good luck to you. <3

    I actually went to the doctor whenever I had the rash for 4 months already and she was not concerned and only gave me a cream which didn't help. I decided for myself to change my diet otherwise I would have definitely had that done at the time.

    It stinks when doctors are not paying attention.
    It is good to hear that you are doing well now.
  • CaSsCuTeRz
    CaSsCuTeRz Posts: 9 Member
    I think if you realized during those 28 days that the problem is gluten then I think you should just cut the gluten out. My whole life I've been suffering from stomach issues and IBS I had to take out my gallbladder when I was like 17 years old. I've been on heartburn reducing pills I would say for about 18 years or so. Finally I started getting really sick. I felt weak all the time and light headed and every time the doctor would test my blood I was anemic. There were nights when I was always itching but the thing that I sufferered from the most were these pains that felt like fibromyalgia and numbness of the hands and feet it was horrible. So I went to spine doctor thinking you know maybe it's my back and they tested me for fibromyalgia and it wasn't but apparently Celiac is very similar to fibromyalgia and the only thing that I found out from going to the spine specialist was that I was super Anemic like he wanted me to go to the hospital. So when I went to my regular doctor he found out about the new studies about celiac disease. He sent me to get tested by the way the test is like $1,500 just in case you don't have insurance and the test usually comes out inconclusive if you already took gluten out of your diet but by the time I went to the doctor I had already been eating differently. I realized that the minute I took gluten out of my body I felt so much better I no longer get the numbness on my hands I don't get those shooting pains I'm not lightheaded or weak and I'm taking lots of iron supplements. But the best part about this whole journey has been that since I stopped eating gluten in January I've lost about 20 pounds and it was really hard at first because I really love ice cream and I love pasta and I love subs and I love breaded chicken and I love all those things but you learn to start making modifications. The hardest thing seems to be eating out but even then you can always look at the menu when there's a lot of gluten free menus. If you know what your problem is or at least if you feel better from not eating gluten then I suggest you keep on with your gluten-free diet. You don't need a doctor to tell you what you have. I mean you can if you want but ...do it for yourself. I feel better and I'm never going to eat gluten again at least not intentionally because it did not make me feel good and now I feel great!
  • BeckaShine
    BeckaShine Posts: 29 Member
    @CaSsCuTeRz your situation sounds so similar to mine, it's crazy. I also had my gallbladder taken out when I was 16. When they dissected it they couldn't find anything wrong with it and my stomach problems were actually worse after that! I saw my doctor today and she said the exact same thing you did all about the test being inconclusive. She told me no matter what to not go back to eating gluten. I do have insurance so my doctor went ahead and took blood for the tests anyway and set me up with an allergist so I can make sure I'm not allergic to anything other foods.

    Eating anywhere but home is a major trial!! I love cooking and baking so I started following different gluten free food blogs and I'm now making my own snacks and stuff. I never leave home without my backpack filled with food anymore.
  • katybowling
    katybowling Posts: 9 Member
    I came off wheat for a short period, I had it again and was sick it was due to my body not accepting it. Any good doctor will tell you unless you're coeliac never stop eating wheat as it's really important for our diet! I am on the FODMAP diet and I try to still have 1 piece of bread every few days to ensure I still have gluten in my body as it's so important.
  • brb_2013
    brb_2013 Posts: 1,197 Member
    I came off wheat for a short period, I had it again and was sick it was due to my body not accepting it. Any good doctor will tell you unless you're coeliac never stop eating wheat as it's really important for our diet! I am on the FODMAP diet and I try to still have 1 piece of bread every few days to ensure I still have gluten in my body as it's so important.

    I've never once heard of gluten being called an essential part of any diet. Gluten isn't required. I mean, any gluten sensitive or celiac can attest to the fact that they're better without it- for life. You do not *need* gluten.

    I'm laughing a lot actually. None of the nutrients in wheat are exclusive to wheat alone, and can be found via other nutritious choices or a supplement if need be.