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Trying To Understand Cd

Tami

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Tami Newbie
Tami
Posted

I have had stomach problems most of my life...diarrhea, cramping, bloating, nausea. I never knew what caused it. I decided last fall that I was tired of "knowing where all bathrooms were" and planning my day around if I could leave the house and not need to be close to bathroom and went to the doctor.

I had been told before that it was IBS. The doctor asked me about my family history. My sister has crohns disease and IBS. So, he arranged for some tests to be done, colonoscopy, small bowel follow through and some blood work. All came back fine. I told him about the burning around my belly button area. he then metioned celiac disease, i had never heard about. They did a blood test. while waiting for the results, I found this website and found out some other symptoms that I have: fatigue, head aches, achiness, joint pain, brain fog, head twitching. The bloodwork came back positive. I had an endoscopy done, it came back negative. The doctor said that he could not diagnose me with celiac disease with a negative biopsy. But, if I went off gluten for 2 weeks and my symptoms went away then it was celiac disease. he didn't mention about me seeing a dietician. I have been learning on my own. I did really well for a while, then we had a death in the family, summer picnics, reunions and I fell off the wagon. So...my symptoms are back except for the pain in my stomach. So, I am writing this to encourage others and myself that it is worth it to stay gluten free. Should I look for another doctor? or just find a support group close to where I live to cope with living gluten free? My sister told me that it may be a good thing that he didn't diagnose me with celiac disease because of getting approved for life insurance. I have been struggling. Thanks for letting me vent :)

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KaitiUSA Enthusiast
KaitiUSA
Posted

I would go with the blood tests in this case and stay gluten free. A negative biopsy does NOT rule out celiac. It simply says there is either no damage or sporadic damage that they missed.

I would find a good doctor who knows alot about celiac. Obviously this clown of a doctor wasn't too bright when it came to that.

This site will help you out with foods and products that you can have. It really gets so much easier.

Carriefaith Enthusiast
Carriefaith
Posted

I think it would be a good idea to get a second opinion on this. Which blood test was positive? Because a positive tissue transglutamase blood test is highly specific for celiac disease. Like Kaiti said, if the biopsy was negative the doctor may have missed the damage. Either way, I think that it is a very good idea to stick with the gluten-free diet since you had a positive blood test and feel better on the diet.

Tami Newbie
Tami
Posted
  • Author
I think it would be a good idea to get a second opinion on this. Which blood test was positive? Because a positive tissue transglutamase blood test is highly specific for celiac disease. Like Kaiti said, if the biopsy was negative the doctor may have missed the damage. Either way, I think that it is a very good idea to stick with the gluten-free diet since you had a positive blood test and feel better on the diet.

<{POST_SNAPBACK}>

Thanks for the information...I am realizing that I cannot do this on my own now and will be looking for a new doctor.

Do most doctors usually say that it is not celiac disease, if the biposy is negative?

Carriefaith Enthusiast
Carriefaith
Posted
Do most doctors usually say that it is not celiac disease, if the biposy is negative?
It depends on the doctor. My doctor had to do the biopsy, but others are satisified with the positive blood test(s).
KaitiUSA Enthusiast
KaitiUSA
Posted

Some blood tests are pretty specific and the tTG test will be taking the place of biopsies for diagnosis in kids soon. I was diagnosed by blood tests alone..the doctor didn't even want a biopsy because the results came back really indicating celiac plus I have one of the main genes for celiac as well.

Some doctors like to do blood test then biopsy but others don't feel the need for biopsies. I for one think they are not worth the time in alot of cases(in some cases they are good though) because they can miss so much.

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