Are Celiacs Only At Risk Of Related Disorders If The Celiac Was Not Diagnosed/is Not Treated?

[L's Mom]

My apologies if this is an obvious question. My daughter has Celiac (biopsy confirmed at 16mo). i keep reading about associated diseases and disorders (there are SO many). is she only at an increased risk of these if she goes off her gluten-free diet? Or is she at an increased risk - even if totally gluten-free from diagnosis forward - simply be/c she has Celiac? I guess what I am hoping to hear is that since she was diagnosed early that her likelihood of all of these horrible other things is no greater than anyone else's. Thanks! K

[nvsmom]

I'm not sure about this, so my response is partially a guess...

When someone has an autoimmune disease, their body has started targeting parts of itself as a foreign object; doctors aren't sure yet why that happens so unfortunately it can happen again. People with one autoimmune disease are more likely to get another than some one else, even if it is treated.

Untreated celiac is quite a stress on the body and as such, it could help trigger another AI disease to become active, or make it easier for other diseases, like cancer, to get a foothold. Your daughter is being treated though so that doesn't apply to her.

In all likely hood, she may never get another AI disease. My other AI problems were triggered after having a couple of serious viruses (like EBV-mono) while untreated. Who knows if I would have had them then if I was eating gluten-free.

Also, the most common SI disease for celiac's and non-celiacs, Hashimoto's, is not that serious once treated. Current estimates are that almost 1/6 women will become hypothyroid in their lifetime. I mention this because being aware of this fact (most people aren't) and the symptoms will help you, and her, recognize AI problems for what they are so she can be treated early and nip any problems in the bud.

So, I believe she may be at a higher risk to develop other AI diseases than other kids she meets (I think about 1/20 has an autoimmune disease - can't remember where I read that) but hers is treated and under control and such a young age that I'd be willing to bet that you've given her a HUGE advantage over others who were not diagnosed (like I was). Many AI patients are advised to go gluten-free to help treat their diseases anyways; she's a big step ahead of everyone.

Try not to worry. Chances are she will not develop anything else; I think that is more of the norm anyways.

Best wishes.

[Gemini]

My apologies if this is an obvious question. My daughter has Celiac (biopsy confirmed at 16mo). i keep reading about associated diseases and disorders (there are SO many). is she only at an increased risk of these if she goes off her gluten-free diet? Or is she at an increased risk - even if totally gluten-free from diagnosis forward - simply be/c she has Celiac? I guess what I am hoping to hear is that since she was diagnosed early that her likelihood of all of these horrible other things is no greater than anyone else's. Thanks! K

The main reason that there are so many associated conditions with Celiac Disease is because, if left untreated, your immune system is always in overdrive. It never calms down, which the removal of gluten will do. If your immune system is always in overdrive, it does not stop with just the small intestine, it looks to other tissue to attack. I am at a loss why the medical profession doesn't understand this simple concept. Since I have gone gluten free nearly 8 years ago, all of my 4 AI diseases have calmed down remarkably well. All of my inflammatory markers just keep coming down and some have tripped into the normal range, specifically my thyoid antibodies. Now, in no way is this guarantee 100% because nothing in life is 100% but it increases your odds by huge leaps and bounds.

The other big factor in recovery and staying well is having the expectation that you will recover and do well. The body follows the mind. Some laugh this off but it has merit. I hear fear all the time on this forum and there is too much of that. You were extremely lucky to have had your daughter be diagnosed at such a young age. I was 46, after a lifetime of symptoms and idiot doctor visits. If your daughter remains gluten-free, there is no reason to believe she will not enjoy good health, without tripping for other AI diseases. I know it can be difficult but try and remain positive about this. I sometimes forget I have 4 AI diseases because I feel so good the vast majority of the time. I also work really hard at it by eating well, never cheating and exercising hard. Just remember to do this with her so her immune system will remain calm. That is key to avoiding other associated conditions.