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I think I have a gluten intolerance?

Discussion in 'Celiac' started by ems_1981, Nov 24, 2011.

  1. ems_1981

    ems_1981 New Member

    Joined:
    Dec 22, 2009
    Messages:
    2
    Hi everyone, it's been awhile since I've been here, but I have had type 1 diabetes for 21 years, but I think in the last two years, I've developed either celiac or a gluten intolerance. From what I can find here on different sites, it sounds more like an intolerance than celiacs.

    My issues started like I said two years ago when I had just horrible stomach pains and just tons of nausea/vomiting. Finally, I went to the emergency room and they thought I had gallbladder issues. I had emergency surgery, but it didn't solve my issues. Every time I eat anything with gluten, I get immediately nauseated, have abdominal cramps, within 20-30 minutes I have bouts of diarrhea or vomiting, my joints hurt and I get a headache. My latest "symptom" is vision changes.

    I was wondering if anyone else has any issues with this or has heard of anything like this. I'm getting desperate. My last celiac screening did come back negative.

    Thanks in advance,

    Elizabeth
     
  2. szofa12yrold

    szofa12yrold Approved members

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    Jul 30, 2011
    Messages:
    42
    Hi Elizabeth,

    Sorry you are feeling so miserable and that the medical profession has not been more helpful. There are a number of options that you have. I encourage you to consider getting repeat blood test for CD, depending on how long ago the last one was. There are a certain percentage of false negatives with that test so just because you test neg. does not rule out the possibility that you have CD. CD and gluten intoerance can both present with the same symptoms and CD can also present with little or no symptoms so a dx cannot clearly be made with just symptoms.

    If you want further clarification whether or not you have CD or gluten intolerance, a gene test might help. I was recently gene tested 5 yrs after going strictly GF. Being that I am strictly GF, the blood test would no longer be accurate in my case. For various reasons, long story, I was not tested when I went GF. I was so desperately sick and couldn't get medical help and being GF was so miraculous that I stuck strictly with it. My recent gene test showed I have the major CD gene DQ2 so with that plus symptoms and related diseases, my healthcare providers consider me a Celiac. It took a combination of an allergist and his recommended gastroenterologist who are both knowledgeable about CD to believe and understand my story and get on board and agree with my self dx.

    If all else fails you can always just keep yourself GF. Thing is that without knowing for sure if you are sustaining damage to your GI tract (Celiac), you should stick strictly with it.
     
  3. ems_1981

    ems_1981 New Member

    Joined:
    Dec 22, 2009
    Messages:
    2
    Thanks

    Thanks, for the information. I've pretty much according to my GI am gluten intolerant, but he thinks my last CD panel was a false negative. So, that being said, I'm struggling to switch over to GF, but finding it hard as I am from Italian/Greek heritage and we're heavily into gluten-laden foods. I've switched to corn and rice pastas, and GF bread, but things like sauces are the difficult parts. But I guess it's all a learning process!

    Thanks again,

    Elizabeth
     
  4. szofa12yrold

    szofa12yrold Approved members

    Joined:
    Jul 30, 2011
    Messages:
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    Hi Elizabeth,

    Yes, it is a big learning curve! but there are many resources out there. So many blogs! and have you checked the forum at celiac.com? I find that sauces are easily converted to GF. If you make any kind of white/cream sauce that used to be started with a roux of butter and flour, just substitute a GF flour in the same amount. No need for a blend of flours like in baking. For sauces I just use straight sorghum or bean flour mix like Bob's Red Mill All-Purpose GF flour blend. Many people don't like the bean flours in baked goods but they match well with cream sauces.

    Is there anything else I/we can help with?

    For bread crumbs I take a loaf of GF bread and process it in the food processor and put the crumbs in a ziplock baggie and store it in the freezer. EnerG bread is great for crumbs. Not so great as an eating bread but very nice texture in stuffing/dressing and as fresh breadcrumbs. I don't dry them. They come out nice and light and crisp without being hard.
     
  5. Flutterby

    Flutterby Approved members

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    Nov 11, 2006
    Messages:
    14,623
    If you are taking gluten out of your diet and having tests done, they'll come back as negative even though they aren't. You need to continue to eat gluten while testing is done. Gluten is hidden in everything from sauces, condiments, drinks, desserts, and of course pasta's and breads.
     

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