Misdiagnosed

stockvault-selfportrait100140

 Gluten sensitivity is a spectrom disorder ranging from gluten intolerance to celiac disease. It has a wide range of symptoms, which can make it hard to diagnose. 

Countless people with the disorder have been misdiagnosed, or undiagnosed.  A friend of mine, told me that gluten intolerance was causing the swelling of her spleen and because of it, her Doctor initially thought she might have HIV. Someone else said she was told she may have Leukemia. Another woman claimed, her Doctor told her that, her test results indicated she was healthy and that she may want to seek counseling.

My Doctor wasn’t concerned about finding out what was making me throw up on a daily basis. She just kept insisting that I take more drugs and insinuating that I’d be taking said drugs, for the rest of life. I had a feeling that it was wheat that was making sick. I finally did get tested for celiac disease but it came back negative.  It was my own decision to try going gluten free, and it worked. I felt better and got off the drugs the first day. My symptoms went away completely.

Some of the symptoms of gluten sensitivity are – bloating, abdominal discomfort or pain, heartburn or acid reflux, constipation or diarrhea, muscular disturbances, bone or joint pain, fibromyalgia, chronic fatigue, rheumatoid arthritis, thyroid disorder, and diabetes.

Most people said it had taken them many years to figure out, they were gluten sensitive. If you’ve been feeling ill or just feel off and can’t explain it, you could be sensitive to gluten as well. There’s no cure but following a strict gluten free diet can help manage symptoms.

Are you Gluten Intolerant or Celiac? Were you misdiagnosed? How long did it take you to figure out it was gluten making you sick?  Share your story, it could save someone else from the pain that you went though.

11 thoughts on “Misdiagnosed

  1. I think more people need to post things like this! Through self experimentation I discovered I’m sensitive to gluten (not necessarily completely allergic, but my body does not react to it well). Makes me so sad that the majority of doctors are not aware (or are in denial) of how prevalent gluten intolerance is and how many health problems it can cause!

    1. I’ve realized that I don’t necessarily need a doctor to tell me what works for me. They are a good resource but ultimately it’s my choice what I put into my body. I’m the one who has to live with feeling sick if I don’t eat right.

  2. Great post. This is the reason I started my blog to promote awareness. In my specific experience I had many symptoms but the biggest was a neurological episode where I has nerve damage, could hardly get our if bed, extreme pins and needles, elegant felt like electric shocks through my body and lost most of my vision. My mother died from MND her mother had MS. I researched and read everything I could. Since going gluten and now mostly grain free I feel amazing, I have never felt so good. Well done in making the difference to your health and life and sharing your story. I believe we all have the potential to heal ourselves.

    1. Thanks Tabitha 🙂 Promoting awareness is really important, especially with more and more people having serious complications due to eating gluten. Thanks for commenting 🙂

  3. Awareness is so important!
    Took us quite a while to figure out what was going on with our daughter. She got to the point of being so ill that she missed a month of school. Her gut ached all the time. She’d start to get better then get worse again. At one point, she couldn’t keep anything down. So the doctor said a bland diet. She had a (wheat) toast, homemade chicken and noodles, cream of wheat, grits, and got so much worse! One day she had a bowl of shredded wheat cereal. She became violently ill. So much so..we took her to the ER!
    They did an upper GI..expecting either a hernia or ulcer. But they found neither. The biopsy of the small intestine found inflammation and abnormal results (they said). I said what does this mean and nobody could tell me!
    After a lot of research, I found celiac and gluten intolerance as a possibility. So we had her go gluten free for awhile. In about 2 weeks she was feeling so much better that she was able to return to school!
    After three weeks of being GF, I wanted to test it. Because what if it is a coincidence and she just got over some other illness? I fixed a meal that had gluten in it, but I told her it had no gluten (I know, I know..mean mommy moment!). She got ill that same night. I felt awful but we needed to know. She’s been GF for almost two years now and she’s the healthiest she’s ever been!

    1. Thank you for sharing your story Kimi. I’m really glad to hear your daughter is feeling better. It really is horrible being so sick all the time. I wonder how many people are being told to eat a bland diet of wheat toast and chicken noodle soup and cream of wheat. It’s sadly ironic. I bet there are countless others out there going thought the same thing.

  4. I was relatively happy & healthy @ 32 yrs. Old (seasonal allergies, eczema, severe colds/bronchitis in MT winters). Then I got kidney stones 2 months in a row (4 in left kidney 1st & 3 the 2nd) both required surgery. Just compounded from there..I had NO idea about Celiac! I spent 10 yrs. Being told I was a anorexic or bulimic (I went from 5’11 175lbs. To 98lbs.) Everything I was eating to gain weight was poison in my body!! Yet even in hospital after a heart attack I got the same advice! After MANY more issues last year @ 43 yrs a DR. Listened…I had an enscopic biopsy for CD..it was sooo positive he told me before results were back! I now have to take RX iron, folic acid, vit D & b12 injections due to lack of absorption. My sister got tested 3 mos. After me & also has it! I’m. 1 yr GF, & 5’9 128lbs. I have a long road still but @ least I’m on the right track! Take care..

Comments are closed.