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Do I Really Have Celiac?


DKS

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DKS Newbie

I was diagnosed with celiac about four years ago, i had the blood test only because my sister had celiac and they wanted to test all of her siblings. she had all kinds of simptoms, i never had any. i went on a strict gluten free diet for about two years and i have just recently gone back on glutin, i have not noticed one bit of difference going back on wheet. is it possible to have celiac and never have any simptoms or have any discomfort of any kind??


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ravenwoodglass Mentor
I was diagnosed with celiac about four years ago, i had the blood test only because my sister had celiac and they wanted to test all of her siblings. she had all kinds of simptoms, i never had any. i went on a strict gluten free diet for about two years and i have just recently gone back on glutin, i have not noticed one bit of difference going back on wheet. is it possible to have celiac and never have any simptoms or have any discomfort of any kind??

Yes it is possible. It is also possible that you have healed any damage you did have and that it will take a bit for any symptoms to show up. You also may have an 'unusual' presentation with organs other than the gut being effected. Gluten can effect the skin, joints, growth, brain function etc. long before GI symptoms show up. Also if you are a teen or a young adult many will go through a phase where they seem to be healed only to have more serious problems develop. Some of these problems can be really serious like lymphomas and adenomas. This effect you are seeing may be this 'honeymoon' effect which in earlier times caused doctors to think that children would outgrow celiac. You are still doing damage but it may take awhile to show up.

trents Grand Master

I would agree with what ravenwoodglass said. Evidence is now beginning to pour in that gluten toxicity affects people in many different ways and does damage to many different organ systems. Classic Celiac disease is defined by damage to the mucosa of the small intestine. Now a new term seems to be emerging, "gluten intolerance" which is broader in scope. But as ravenwoodglass has well said, just because you are asymptomatic doesn't mean you don't or won't have damage to the mucosa of the small bowel. In my case I had little or no GI distress. I was diagnosed because I had elevated liver enzymes that had no other explanation. The blood test was positive, however, and the endoscopy/biopsy showed the classic damage to the mucosa. After that a bone density test revealed significant demineralization. I now know why I have lost two inches in height and developed some scoliosis. So, if your blood test was positive you need to get the endoscopy/biopsy done. This disease is sneaky. You don't want to mess around until you discover that there is irreversible damage to some organ system that was so incremental you didn't notice it for a long time.

gfpaperdoll Rookie

I totally agree with the above two posts.

My son age 37, now has liver damage, "idiopathic" according to the doctors. My son refuses to go on the gluten-free diet. I know that he has had this since he was born. I would buy his rice crackers at the health food store, all the while my doctor telling me that was not necessary, wheat never gave a child diarrhea...

I am double DQ1, the gluten intolerant gene & my grandson is also double DQ1, he has failure to thrive, he is 11 now & the same size as the 7 year old & the 9 year old... my son also refuses to let him eat gluten-free...

my mother died of colon cancer, & had severe food allergies the last few years, that required many ambulance trips to the hospital, that was before we knew about gluten.

My double DQ1 sisters have rheumatoid arthritis & IBS among other things, they have "tried" the diet but it is easier for them to eat whatever is around...

DKS Newbie

thanks for the info. so if i go off the gluten-free diet which i already have and then get the biopsy in six months will that be long enough to see damage? a little info on me, i'm 46 in great health, don't smoke or drink, excercise all the time

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    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
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