Life altering consequences of undiagnosed celiac disease

When I was 21, I suffered an ectopic pregnancy that ruptured and nearly killed me. For those who don’t know what that is, “ectopic” means in the tube, rather than the uterus where it should be. It ruptured, causing massive hemorrhaging and infection. I went to the ER 2 (or was it 3?) times in the span of 2 weeks, and the ER docs never caught it, until the last time. Which was lucky, because I had lost so much blood by then, I’d have died soon. I had to have surgery, and they removed my wrecked fallopian tube, and half one ovary. I was in hospital for a week, then home unable to work for 3 weeks after that.

I learned later (much later!) that my fertility and subsequent infertility was very likely caused by un-diagnosed celiac disease. By the time I was diagnosed, I was already peri-menopausal at age 42. 2 years after my celiac diagnosis, I was fully menopausal. The definition of menopause being one full year with no menstruation. In my entire life, I’d never had a regular menstrual cycle. Ever. And they were always incredibly painful. Right up until I eliminated gluten from my life. Then my cycle was a breeze. That lasted less than a year. Because then I hit menopause.

I had started having problems with my cycle as soon as I inched my way toward puberty. I started getting cramps almost a full year before my first blood, which started at age 11. I’d be doubled over in pain for days. In high school I was put on prescription pain medications. I also started getting regular ovarian cysts, and occasionally they would rupture, and I would be laid up for a few days, in pain, unable to move. I always felt rather like I’d been run over by a truck when that happened. I recall one rupture I was at Prom. Had to go home early because I was so nauseated I was puking in the ladies room. Everyone thought I was drunk. But no. Not drunk. Another time I was out with friends at the fair, I was on a ride, and BAM! Had to go home. For a while after that I was always afraid to go on rides, for fear another cyst would rupture. I love rides.

During one doctor visit, he said that he’d had another patient with a similar problem who also had had her appendix rupture, and she said the cysts were worse. I never had my appendix burst, but I can believe it! Ruptured ovarian cysts are no fun at all.

And all because I went so long misdiagnosed. Had any of my doctors actually looked at me, and my genetic history, and my health history (I only had 2 doctors up until I was 20, they should have been able to figure it out together!). Irish genealogy,  digestive issues since toilet trained, migraine headaches since less than 1 year old, debilitating growing pains, “migraine stomach” , frequent cankers and cold sores, cavities etc etc etc. I was given allergy tests, and food elimination tests, but nothing every worked. Because they never eliminated and challenged gluten. They’d eliminate wheat one time, then next time eliminate barley, or rye. Never all 3 of them at once. I tested positive for food allergies a list as long as my arm, allergy to wheat was positive, so they said “eat rye bread”. Gluten was never mentioned. Despite classic text book symptoms.

Had they figured out it was celiac disease, and had I eliminated all gluteny grains when I was a kid, how different would my life have been? I probably wouldn’t have had that ectopic pregnancy. I probably would have done better in school (statistically, people with celiac disease do not typically do as well in school or in business as people who do not have celiac. Probably due to brain fog, mental health issues, as well as general health issues like pain that may keep them absent often.) I probably wouldn’t have developed fibrobmyalgia, or depression, or anxiety, or chronic fatigue, or Grave’s disease.

I could play the “what if…” game and cry “woe is me”, but I’m done with that. I’m over it. It’s in the past, there’s nothing I can do with it. Unless some raggedy man in a blue police box lands in my living room to take me away to the past. Today I am healthier than I was back then. I’m physically stronger. Though my stubbornness and tenacity were just as much I was when I was a toddler learning to walk. My mum says I was so determined to walk that I would expect walls to move out of my way. I have my ups and downs of course, everybody does, and throughout my life, I never really learned how to deal with stress. It’s not a skill that runs rampant in my family, shall we say. Exactly the opposite in fact! I never felt safe as a kid, the stress was constant. It’s something I’m learning recently, with the help of a life coach, and some self love. I’m a work in progress.

Why am I telling you all of this? Because celiac disease is a horrific disease, it can damage everything in your mind and body. Some people though don’t think it’s all that serious “c’mon, just one bite won’t hurt you!”. But it can shorten your life expectancy, and it can make the life you do have absolutely miserable, unless you’re diagnosed early, and you are given the information you need to heal, not just to live, but to THRIVE. Most doctors though just say “don’t eat gluten” and send you on your way. I think this is a major failing in the medical system and it needs to be fixed. This is one reason I became a health coach. So that I can help people make informed decisions about their disease. “Gluten free” isn’t enough. You have to heal the gut, or you’re not going to get better.

I suffered for 40 years or so with celiac symptoms before I was diagnosed. Celiac wreaked havoc through my entire body, made me infertile and made me an emotional wreck unable to cope with life.

Now I’m better. Eating a free from gluten diet, healthy, happy, and thriving.