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On The Road To Being Misdiagnosed And Frustrated.


Jaymes805

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Jaymes805 Newbie

So I've had a lifetime of stomach issues after eating such as bloating, cramps, acid reflux, diarrhea, constipation as well as migraines, bronchitus all the time, strep throat every few months, a stuffy nose, sore joints, vertigo, the inability to gain weight growing up, the inability to lose weight now, I'm tired all of the time, moody, the list goes on and on. I was told by some friends who have Celiac that I NEED to get tested. After this suggestion, I started researching. A lot. And every time I saw a symptom, I thought 'THAT'S ME!' I had gotten to the point where I started thinking all of this was normal and that I just had a low immune system but after researching, I figured maybe not. So I got tested.

...and my blood tests came back negative. I did have some vitamin deficiencies and my WBC was low but in the long run, no sign of celiac or gluten allergy. I have read that blood tests aren't always accurate so when I had my appointment with my doctor today, I figued after my extensive list of symptoms that he would order a small intestinal biopsy. But nope. He talked to me about my issues and apparently the only thing he heard was 'acid reflux'. He referred me to a specialist for an esophagus endoscopy and gave me a prescription for an antacid..which I take when needed anyway.

Should I go to the specialist and see if he does any tests other than an acid reflux test or should I go get a 2nd opinion from a doctor? Not sure where to go from here, I just feel like I'm on the road to being misdiagnosed.. or just diagnosed for a symptom that I already know I have that may be related to a gluten allergy.


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kareng Grand Master

Go to the GI. Tell him/her your issues. If they are going to do an endo they might as well biopsy while they are in there.

Jaymes805 Newbie

Thank you for the quick reply. I was thinking the same thing, just wanted opinions. :)

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    • Suze046
      That is helpful thank you I hadn’t thought of that! 
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      I just wanted to share my support for you. Rant away. We all know that, and have experiences like that at some point. I am sorry for that very unpleasant, and emotionally isolating reminder of your medical condition. Which always is exacerbated by the hunger. I will admit many of my family friends, and coworkers found it easier to exclude me than to accommodate me. I also have to be very strict with cross contamination so in hindsight they did me a favor.  The sting however can often still be unearthed when I read experiences like yours.  I am sorry you had that occur. I hope you, and the coworkers can find the easy more accommodating experiences again after this unfortunate incident. Best wishes. 
    • Awol cast iron stomach
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    • Scott Adams
      if you have already learned that Gluten is the cause of your symptoms, of course there is no need to add it back into your diet— your decision could save you a lot of needless suffering. One thing to consider is that if you do have celiac disease, your first- degree relatives may also need to get screened for it, because, like diabetes the disease is genetic, although many of its triggers seem to be environmental factors. You may want to consider getting a genetic test for celiac disease, so you can at least warn your relatives if it turns out that you do carry a celiac gene.
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