December 5, 2023

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Celiac Disease and Me

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I was diagnosed with Celiac Disease at age 51. At the time of this writing, that was just over seven years ago, which seems like a long time when I realize how many years I’ve now gone without (intentionally) using the wheat products we all take for granted. On the other hand, allowing for a variety of factors, the diagnosis could have been made 10 years or more earlier. I’ll unpack all of that in a moment, but I need to digress on another point.

So, yeah, this is the second in what I have recently realized will be an “and Me” series. One second after that fact burst into my brain, I had another thought: I’ve got issues. And the point of the blog and the social media posts and the discussions is not self-pity or any attempt to show how great I am because I can overcome such “tragic” adversity. We all have issues. We all have problems. Some of our problems are the same. Some are different. Maybe there are similarities and maybe not. My goal is to encourage you to be something that perhaps you’ve thought you cannot be because of some personal challenge. By laying bare my issues and discussing how I deal with them, I’m hoping you might find a direction to overcome the things that might be holding you back from realizing your better self. We’re in this together, so let’s share our experiences.

The Story

So, 10 years before my Celiac diagnosis, I had physical issues which made things in my life difficult. I didn’t understand why, but it was frustrating. As that decade progressed, all kinds of other problems presented. In retrospect, it all makes sense. Looking back and knowing what I know now, I believe my problems with gluten began many years before my diagnosis.

The thing about that is, it’s really too bad. From an athletic (or at least, a basic activity) level, those years were kind of lost. The result of a gluten allergy which is ignored is physical damage. That damage results in increasing difficulty of nutrition absorption. Lack of nutrition causes other health problems. It’s a downward spiral. The physical damage is reversable, but it takes time. Once I was on a gluten-free diet it was still many months before the damage was reversed.

I credit an enlightened gastroenterologist for playing a hunch that led to the diagnosis. At the time, many doctors were not interested in Celiac Disease. In spite of decades of increased understanding of the disease, Celiac Disease was still widely ignored by frontline medicine. Had I had another doctor at the time, I might still be sick and miserable. I might not be a multi-sport athlete (trying to build a career in triathlon). Worse yet, the disease might have progressed to life-threatening levels. I’d recommend this doctor who was a godsend to me, but, alas, he has retired.

Mea Culpa

In all due honesty, a contributing factor in my delayed diagnosis was my general antipathy to typical medical care. So much of medicine focuses on symptom control, as opposed to disease cure. For me, if my doctor can’t fix the core problem, I’m not interested. I can deal with symptoms. I can manage discomfort. You want to make me happy? You want to impress me? Fix the root problem. That’s just the way I feel. Obviously, I don’t see my doctor very much. And that’s the point. Had I taken my symptoms to my doctor earlier in the process, he might have made the diagnosis earlier. And while that would not have cured the disease, it would have adjusted my diet to allow less physical damage.

Look, I’m not a doctor. I only know my experience. I am my own laboratory experiment. I know what works for me, and what doesn’t. Having said that, let’s wrap this up.

Digestive Problems

I felt as though I had done a good job of eliminating gluten from my life. And yet, I had other occasional digestive problems. Other gluten sufferers have reported similar experiences, and often times I hear the speculation that some gluten must have sneaked into their food from a dirty kitchen or floating on the air or some kind of cross-contamination (some of which is possible, but I’m not on board with the whole idea of gluten floating into the house from the brewery down the street thing – just sayin’).

I think there is a more-likely explanation. My ah-ha moment was when I learned about FODMAPs. People with Irritable Bowel Syndrome are, at this point, probably well-aware of FODMAPs. I don’t have a diagnosis of IBS, so I was in the unaware group. Then I saw that some athletes are using FODMAP diets to help with their performance, so I started the research. I’m not going into the details here (that’s the subject of the upcoming FODMAPs and Me blog). The point here is that I’ve come across enough anecdotal evidence to suggest that people who cannot tolerate gluten have a high incident of not tolerating some foods with a high FODMAP rating. Once I started experimenting with reducing or eliminating specific high FODMAP foods, my digestive issues began to clear up. Gluten and FODMAPs … who knew?

See A Doctor

But let’s get back to the gluten focus.  Current estimates put gluten sensitivity at about 1 in every 100 people. I suspect It might be a little higher than that, but (again) I’m not a clinician. It may be that if we had a higher instance of gluten patients being treated, our estimate may go up. It’s likely that there are people who are sufferers of Celiac Disease but are unaware of their own illness.

If you think you may have problems with nutritional uptake, or digestion, or gluten sensitivity, see a doctor. And if your doctor doesn’t consider Celiac Disease as a potential problem for you, ask him to consider it. Or find another doctor. Digestive issues are important, for so many reasons.

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