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Are They The Same?

alexa1

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alexa1 Newbie
alexa1
Posted

I am just wondering if celiac and gluten intolerance were the same thing? Can you have gluten intolerance and not have celiac? What is the difference, and what about symptoms.

Any help would be greatly appreciated.

I have 1 positive test for celiac but negative biopsies. My dr was so certain that I had celiac, that after my first neg. biopsy he did another endoscopic, and did 5 biopsies that time, which all came back neg. So now he's thinking that i am not celiac. He is having me on a gluten diet for the next 3 months and he's doing blood work every 4 weeks and then he wants me to go gluten free for 3 months with blood test every 4 weeks. I also have chronic pancreatitis. I've had MRI's and C-T scan which were all normal. also my endoscopic showed that my pancreas looked good. So he's thinking that maybe the gluten had something to do with it?

My dr did have me on a gluten free diet for 1 month and during that time I felt great. No abdominal pain, bloating, gas diarrhea etc. My lipase(pancreas) enzymes went from 586 to 130. My energy was higher, my moods felt better. And blood work looked better too.

Any thoughts??

thanks

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Wolicki Enthusiast
Wolicki
Posted

THe symptoms can be exactly the same. Some will never test positive for Celiac and have all the same terrible problems that gluten can cause. You obviously have one or the other, based on positive dietary response. Keep up the good work!

one more mile Contributor
one more mile
Posted

If going of the gluten fixed the problem why try to find another solution.

"he wants me to go gluten free for 3 months"

Personalty if any doctor told me to go back on gluten I would look at him like he was mad.

Then argue with him. If he did not listen to my reasoning I would leave and not come back.

I do not say this lightly. Gluten nearly killed me.

Would you tell a person with a peanut allergy to try peanuts again just to see if the breating problem

comes back?

I may sound a little radical but if I lost 6 inches of my gut in two weeks( from gas and bloat), went from 15 hours of sleep a day to 9 and went from 1 fibro attack a week to one every three months just from cutting out gluten. Why would I do that to my body again? Your blood work already gave you the answer you need. Tell him to get a different ginny pig.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have 1 positive test for celiac but negative biopsies.

My dr did have me on a gluten free diet for 1 month and during that time I felt great. No abdominal pain, bloating, gas diarrhea etc. My lipase(pancreas) enzymes went from 586 to 130. My energy was higher, my moods felt better. And blood work looked better too.

Any thoughts??

thanks

With the great response to the diet and the positive blood test I would stay gluten free and not look back. You have 22 ft of small intestine and damage can be patchy and get missed. IMHO your doctor is one who is going to torture you until you are damaged enough to make him happy to diagnose. Some doctors would diagnose you based on your blood work and the positive response to the diet. I would consider myself celiac and not look back. IMHO there is no difference between gluten intolerant and celiac. Both labels need a fully compliant gluten free life.

Get a full copy of the endo report and post the findings here. Some doctors miss the early celiac stages or are unaware of what damage to look for before the villi are totally destroyed. We have a lot of very knowledgeable folks here who may be able to tell if the test was indeed a positive but your doctor didn't know fully what to look for.

nora-n Rookie
nora-n
Posted

I have seen postings from people who repeatedly had negative biopsies, and when they had the video capsule endoscopy, either the celiac was clearly visible or it was at the wrong end of the small intestine.

That biopsy business is not that accurate...

Go by the blood tests and how you feel.

Another thing to consider is, that lyme patients often have positive blood tests but negative biopsies, and react to gluten just like celiacs. They are said to get better after successful treatment for lyme. thye ahve to be just as strict gluten free as any ordinary celiac. (but can tolerate gluten afterwards)

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      26F!
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