Am I Or Aren´t I?

[Debbie65]

Hi,

Found your forum and thought I´d see if anybody can offer advice.

As A baby I was very ill and failing to thrive(40 years ago). After almost dying and after a plethora of tests which were obviously more distressing to my mother than they were to me at the time, I was diagnosed as coeliac. Until I left home at 17 I followed my diet strictly, than surprise, surprise, my rebellious streak kicked in and kept kicking for about 10 years.

After numerous visits to my new doctor I was told I had IBS. The tablets helped a little but not much. Eventually I was given a endoscope that was negative so I have continued eating gluten for the past 12 years or so but I´m fed up feeling awful and might return to the gluten free diet to get possible respite from alternate diarrea/constipation, stomach pains, gatting breathless quicker than my husband who smokes 40 cig´s a day, insomnia, tiredness, lethargy etc, etc.

Does anybody have simlar experiences or does anyone out there know how accurate my diagnosis as an infant 40 years ago might have been?

Thanks

[mouse]

Probably very accurate. You never outgrow Celiac and must follow the diet for life. You can have a false negative, but not a false positive. If your GI doctor did not take the biopsies from the right areas and did not take enough of them, then nothing would show up. Having the biospies is a hit or miss proposition. I hope you go back on the diet as many of us were diagnosed late in life and now have many other medical problems because of the late diagnosis.

[Ursa Major]

Hi Debbie, and welcome to this board.

Your problem is a common one, unfortunately. Many people who were diagnosed as babies many years ago were later told that they 'outgrew' the celiac disease, or went into remission or similar nonsense.

The doctor you saw recently should have told you that you don't outgrow celiac disease, and if you were diagnosed as a baby, you still have celiac disease and need to get back to eating gluten-free IMMEDIATELY.

If you don't, you may end up with other autoimmune diseases or cancer, caused by celiac disease.

IBS is not even a 'real' diagnosis, it's what doctors tell you when they don't have a clue what's wrong with you. Or when they're too lazy to run the necessary tests. There is obviously a reason for your bowel to be irritated, and it appears to be an intolerance to gluten.

Please go back on a gluten-free diet, and it is very likely you'll feel better very soon, and your health issues will resolve. They are all VERY typical for celiac disease.