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Feel Like I Need Confirmation...

eric4015

By eric4015
in Coping with Celiac Disease

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eric4015 Newbie
eric4015
Posted

For years, every once in a while I would get the most horrific stomach pains that would last for 5 or 6 hours at night. I could never narrow it down to any specifc foods or drinks, and no doctors (the 2 I went to) were able to figure it out. I had an edoscopy, a stomach sonogram, all sorts of test with no diagnosis. 4 months ago I went to a new doctor and when I told her my symptoms, right away, she had an idea what it was. She took blood and the test came back that I had the "antibodies" for celiac. My numbers for this test should be around 45 and I was at 145. So doc told me to go wheat and gluten free for 3 months to see how I feel. Since then, I've felt great. No stomach pains, heart burn is gone. All seems to be OK. But doc hasn't had me go for any other tests to confirm. She says "we go by how yoou feel. If you feel good, stick with the diet." I do feel good, but should I have any other tests to confirm I have celiac? Should I be doing anything else? I welcome any thoughts or comments...

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eatmeat4good Enthusiast
eatmeat4good
Posted

You had the test and it was very highly positive.

You were diagnosed with Celiac.

You have had a very positive reaction to the gluten free diet.

You have your answer...You are Celiac by blood test, Dr.'s opinion, and your body's reactions.

Now you just have to find a way to believe it.

It is hard to accept sometimes but there is no other confirmation to get, unless you want to eat gluten until you damage your intestines enough to have a biopsy that shows Marsh level damage..and that seems completely unreasonable and unnecessary.

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Takala Enthusiast
Takala
Posted

This sure beats the possible alternative scenarios of being told it's-

AIYH (all in your head)

Asthma/allergies

arthritis

not arthritis, fibro

Heartburn

MS

brain lesions

Fibro again

Gallbladder

Kidney

cystitis

Bone loss

Fibroids/cysts/endometriosis

Idiopathic (medical term for "unknown cause" actually my favorite, as the doc was cool)

Peripheral neuropathy

nerve damage

tendonitis

AIYH again

people with your coloring are more sensitive (shouldn't people with your medical degrees from a cracker jack box, still be able to look up the incidence of celiac in the Celtic population since you noticed ??? )

lack of exercise/proper lifestyle from moron HMO with famous slogan "thrive"

Take the diagnosis!

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Roda Rising Star
Roda
Posted

For years, every once in a while I would get the most horrific stomach pains that would last for 5 or 6 hours at night. I could never narrow it down to any specifc foods or drinks, and no doctors (the 2 I went to) were able to figure it out. I had an edoscopy, a stomach sonogram, all sorts of test with no diagnosis. 4 months ago I went to a new doctor and when I told her my symptoms, right away, she had an idea what it was. She took blood and the test came back that I had the "antibodies" for celiac. My numbers for this test should be around 45 and I was at 145. So doc told me to go wheat and gluten free for 3 months to see how I feel. Since then, I've felt great. No stomach pains, heart burn is gone. All seems to be OK. But doc hasn't had me go for any other tests to confirm. She says "we go by how yoou feel. If you feel good, stick with the diet." I do feel good, but should I have any other tests to confirm I have celiac? Should I be doing anything else? I welcome any thoughts or comments...

Sounds like you have a smart doctor!!

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ravenwoodglass Mentor
ravenwoodglass
Posted

You have a great doctor. You have positive blood work so stay strict with the diet and go back for repeat blood work in 6 months or so. Your relief of symptoms and the lowering of antibodies on your recheck will be your confirmation. While false negatives are really common on celiac blood testing false positives are not. Read as much as you can here and ask any questions you need to. You also should tell your immediate family, Mom, Dad, and siblings that they also should be tested.

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angel9165 Newbie
angel9165
Posted

I have a sister who after testing negative to the antibodies started a gluten-free diet and feels great. She won't got in for further testing as the way she feels is proof enough. I'm with all the other responses, you are a Celiac and more testing isn't needed. I'm glad you're feeling better. My symptoms were very similar to yours and I spent years w/o a correct diagnosis. It wasn't found until I became anemic so be thankful you found that smart doctor early in the process (2 misdiagnoses isn't bad...I went 25 years and saw countless docs). Seems like things are going very well for you now that you know what not to eat...same here. Good luck with your journey and enjoy all those naturally gluten free foods & drinks out there...time to really start living! B)

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eric4015 Newbie
eric4015
  • Author
Posted

Thank you to all who shared your thoughts and advice. I appreciate it.

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micfunky Newbie
micfunky
Posted

I was suprised to hear that 1 in every 133 people have celiac. Glad you found out what was wrong and feel better. Doctors are dumb, took eight years and half a dozan drs to figure out that I had it!

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