Am I Crazy???!!!!

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I've had GI issues my entire life. Had a foot of my intestines removed in 2000 and after multiple testings I was told it wasn't crohns or diverticulitis. Matter fact, they said they had no clue what caused the infection. I also have extremely sensitive skin to the point where I break out in hives alot, eczema on my face, my scalp and recently on my hands. In 2012 my gall bladder was abruptly removed from extreme gallstone pain. I also get headaches often. The worst is the constant running to the restroom & bloating & vertigo & hormonal imbalances.

But why oh why when I mention getting testing for Celiacs or gluten intolerance the Drs look at me like I'm crazy??!! It's so frustrating for me right now. They want to prescribe steroidal creams and anxiety meds but isn't that masking the issue? And as I get older everything seems so much worse. At the very least run the tests to be sure.

Sorry guys but thank you for letting me vent.

Replies

  • Lady_Clarington
    Lady_Clarington Posts: 76 Member
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    Have you tried cutting gluten out of the diet for a month and seeing what happens? Then going back to the doctors and seeing what they say if you find an improvement. At least if you don't you've not lost anything (though you would need to go back onto gluten if they decided you needed a test for it to be accurate).
  • anglyn1
    anglyn1 Posts: 1,803 Member
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    You don't sound crazy, the doctors sound crazy for not wanting to test you! I would push once more to get at least the blood test and hopefully an EGD w/ biopsies for celiac. If you absolutely can't find a doctor who will order the tests then go ahead and just eliminate gluten and see what happens. When you do the elimination you've got to be very strict! Even a teeny tiny molecule can cause reactions if you are celiac and you won't be able to accurately gauge your results.
  • keemra
    keemra Posts: 34 Member
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    Why do you need to be tested? For heaven's sake, just stop eating gluten. I have never been tested, but have been gluten free for 30 years. The first 10 years, I kept going on and off, and every time I ate anything with gluten, I would get sick. (The same symptoms you describe) That is proof enough for me. Recently, some of my symptoms started coming back, so I have had to eliminate dairy too. I am feeling great again. :)
  • CorlissaEats
    CorlissaEats Posts: 493 Member
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    Eggs are the foods most likely to cause headaches, but the rest does sound like gluten or diary issues. (People with gluten issues frequently have issues with diary and eggs too. The proteins are similar in structure.) If you think you have an issue with gluten, just cut it out of your diet. I mean, do your research to ensure you are eating a balanced diet, but stop eating it even without a diagnosis. It took 6 months for the effects of gluten to leave my system, and year for me to start feeling ok again so stick with it. The down side of cutting it? For the blood testing, you actually need to be eating wheat.

    You are your own advocate! Gluten intolerance, sensitivity, and celiac disease is a relatively new concept in the medical world. They think everyone is over reacting because of the media coverage but I'm not sure we are! The person your poor health effects the most is YOU. Most doctors' education stops once they leave school/their internship. And consider that a significant portion of their formal education is learning about drugs!!! They don't know everything and too many of them are unwilling to admit that patients have more time and interest in researching conditions that then do. They are a partner in your health journey, but they work for you. Be kind, certainly, but don't give in if your symptoms aren't clearing up.

    PS Go see a naturopathic doctor. Mine was able to run additional tests for allergies that my doctor was actually unable to access. Totally worth the money and she was more interested in clearing up the root problem than dealing with the symptoms.
  • MeridianGirl
    MeridianGirl Posts: 5 Member
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    I agree with everyone here. My doctor just kept telling me that I had IBS and that there wasn't much I could do. I decided to just go gluten free on my own and within a month I noticed my symptoms subsiding. You can't be tested without going back on gluten but I don't need a diagnosis. If I consume gluten, I feel terrible...that's all the diagnosis I need. You are your own best judge on what works and what doesn't. If it doesn't help, you've lost nothing. Don't give up until you feel better! Just be careful with packaged gluten free products. They are often full of sugar, fat and artificial ingredients.
  • canadjineh
    canadjineh Posts: 5,396 Member
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    Best to go GF and recheck how you feel in 6 months of being very strict. Easiest if you eat 1 ingredient foods, lol. Like meat, fish, raw nuts (roasted ones are frequently dusted with flavourings that contain gluten), beans, fresh vegetables and fruit. As MeridianGirl noted, try to stay away from GF fakes of processed wheat foods like cakes, cookies, etc. A good GF bread once in a while doesn't hurt, but it is very high in calories & carbs with very little fibre. I eat one small loaf a month.
  • Azuriaz
    Azuriaz Posts: 785 Member
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    I can't believe they removed a foot of your intestines, don't know why, and won't test you for celiac. They're idiots. If you can find a physician who isn't an idiot to test you for it, do so before you cut out gluten, if not, what do you lose by cutting it out and seeing what happens?
  • SyntonicGarden
    SyntonicGarden Posts: 944 Member
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    They can test for Celiac quite easily. Gluten or wheat sensitivity? Eh. My experience and validation comes from an elimination diet that someone mentioned. About 20 years ago, I figured out bagels and pizza did horrible things to my system. I cut them out and the symptoms stopped. I'd have a slice or two and the symptoms returned within hours.

    A few years ago, when going GF first became "trendy" (a la Atkins and South Beach) I went to get tested. Since I was wheat free for so long, the gut looked fine. Bloodwork was negative for celiac. Best guess? Sensitivity.

    So yeah, if no one is listening to you, maybe elimination IS the way to go. :)
  • AFGyrl
    AFGyrl Posts: 34 Member
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    I am so glad I found this!!!!! This is exactly what I'm going through! They refuse to test me
  • canadjineh
    canadjineh Posts: 5,396 Member
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    How can they refuse to test you?? You hire the doctor - he/she works for you. If they don't test what you need without giving you a valid reason, get another doctor. That is only if you need the test results for assistance from your insurance provider for buying gluten free food or for your medical tax write-off (like in Canada). If you don't get any benefits from having the test - don't bother, just eat GF and feel better.
  • sllm1
    sllm1 Posts: 2,114 Member
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    My doctor refuses to believe that my elevated liver enzymes were due to gluten. I quit eating it, and they've started to go back down. I feel better, lost water weight, no more digestive issues, no more joint and muscle pain, and the whole nine yards. I just decided to continue with not eating it. I could get a second opinion, but does it really matter if the solution is to not eat gluten? I don't want to waste any more money or time on doctors who don't yet have a clue about it.