Still At Risk On A Gluten Free Diet

[finlayson]

I'm not sure where to post this question, so I'll put in under "coping with". Every time I read information on Celiacs Disease either on-line or in magazines, many articles begin by saying that Celiacs are at increased risk of a whole range of health problems. They make me feel that at any moment I'm going to keel over. My question is, if you follow the diet to the best of your ability, and do not ingest gluten, are we still at higher risk for the long list of ailments, or are we no more at risk than a non-celiac? Does anyone know if there are specific health complications directly related to celiacs which are not diminished by following the diet? My family doctor is not very informed on this subject and changing to another is almost impossible (I'm in Calgary, Canada and there is a family doctor shortage). Thanks in advance to anyone who can shed light on this.

[kareng]

I'm not sure where to post this question, so I'll put in under "coping with". Every time I read information on Celiacs Disease either on-line or in magazines, many articles begin by saying that Celiacs are at increased risk of a whole range of health problems. They make me feel that at any moment I'm going to keel over.

I feel like that sometimes, too.

I can't really answer your question scientifically. I think certain things are not going to happen if you have a healed small intestine. It also seems that if you have one auto immune disease you are more likely to get another.

[ravenwoodglass]

I could be wrong but I think most of the risks are for celiacs who are still eating gluten. In my own case there was a whole slew of the 'associated risks' that resolved once I had been on the diet for a while and healed.

[cassP]

try not to stress too much- i know how u feel, when i first started on my dx journey- i read everything (still do)... and i kept seeing EVERYWHERE that Celiac and Diabetes 1 go hand in hand... blah blah blah... i was so paranoid... but its not the case really... ya- it is more common for one to have multiple Autoimmune Diseases, rather than 1- but we all have completely different genetic makeups, etc...

like all said above- i think once you're gluten free, and completely healed- than you dont have any more risks than the next person. i think if you were UNdiagnosed, or if you were UNdiagnosed for many years- you may be more likely to develop your genetically predisposed autoimmune conditions, or other illnesses.

[finlayson]

Thanks for the replies. I'm not really stressing about this, but I do like to keep as informed as possible. I was just wondering because when I read the articles in magazines like Gluten-free Living, or Living Without, many of the articles discuss health issues as though they are a problem for celiacs regardless of whether or not they are on a strict diet. I've been thinking about this for a while and decided I should just raise it with people who are probably more experienced with all this than I am (2 years gluten free after biopsy confirmation). Your comments are pretty much in line with my own. Thanks again.

[CMCM]

I'm not sure where to post this question, so I'll put in under "coping with". Every time I read information on Celiacs Disease either on-line or in magazines, many articles begin by saying that Celiacs are at increased risk of a whole range of health problems. They make me feel that at any moment I'm going to keel over. My question is, if you follow the diet to the best of your ability, and do not ingest gluten, are we still at higher risk for the long list of ailments, or are we no more at risk than a non-celiac? Does anyone know if there are specific health complications directly related to celiacs which are not diminished by following the diet? My family doctor is not very informed on this subject and changing to another is almost impossible (I'm in Calgary, Canada and there is a family doctor shortage). Thanks in advance to anyone who can shed light on this.

Let me give you a very reassuring reply. My mom was very very ill and nearly died from undiagnosed celiac disease when she was about 46. At her time of diagnosis she weighed 85 pounds or so and her intestinal walls were smooth as a billiard ball, no villi left, and even her stomach was a mess. So she went gluten free, carefully so because with even the slightest bit of contamination she gets terribly sick. She never had ANY further health issues, has always been totally healthy. Next week she turns 90!!! And no one thinks she is 90, she looks great, her mind is 100% like always, and she has no health issues at all.

The key is to remain 100% gluten free, even if you don't get as obviously sick as my mom does. Your gut damage will heal. Even as bad off as my mom was, on a gluten free diet she healed pretty quickly. She had a second endoscopy after about 6 months gluten free, and most of her villi had regenerated and despite how very sick she had been, she quickly got over all that and gained back the necessary weight.

[mushroom]

I believe those risk levels are mostly for undiagnosed celiacs still consuming gluten. While we have heard from posters of instances of developing something a year after going gluten free, I would think that every year you are gluten free your risk declines, just as with smokers your risk declines back to that of the general population after a few years for the various things that smoking causes.