I just tested positive for celiac disease!?! Crazy, right? I was stunned when I got the phone call. However, from what I understand, I have to wait for a confirmation of the diagnosis after getting a biopsy of my small intestine.
I recently came across two people who had suffered through infertility and then after going gluten-free (without a diagnosis, I think?), they both conceived. So, I thought, what the hell, I’ll check into it. After researching it, I couldn’t believe it — I had pretty much all of the symptoms, but there were a few I didn’t have.
- stomach/GI problems of all kinds (this is primary symptom)
- muscle spasms / nueropathy
- low iron / anemia
- headaches / migraines
- excema / excessive dry skin
- bruise easily
- malnutrition / malabsorption of nutrients
- infertility / early miscarriage
- mouth ulcers
So, I called my regular doctor and got tested. They probably thought I was crazy coming in out of the blue asking to be tested for celiac disease. So while all of this made sense for me, I was still surprised when they called me the next day and said I tested positive. This is an autoimmune issue, and I already knew that I had some autoimmune abnormalities.
I went through a whole spectrum of emotions about it. At first, happy because I thought *this* could be *it* — my infertility and loss problem finally revealed. There is a definite link between infertility and miscarriage with this disease, but it may still be in it’s infancy of knowing exactly why and having doctors be familiar with it. Read more here. I felt angry and disbelieving that if this is what is wrong with me, then I have gone through all the losses for nothing. Angry that doctors failed me for many years in diagnosing this. Angry at myself for not figuring it out sooner. Angry that it’s not standard testing before IVF. I feel like all of my babies died and it was so preventable. Then, I thought who knows, I have so much wrong with me, this is just one more thing. I felt sad that I will have to give up my favorite food group – bread! Unhappy that I will be the different one – the one that can’t eat out at many places, etc. And, happy to know what is wrong with me finally! Knowledge is power.
I always knew something wasn’t right, but doctors through the years have ignored my complaints about this. Told me things like I should drink more water. After time, I just got used to it and figured this was normal and probably how everyone was. Wrong! It’s not normal to feel bad after a majority of the meals you eat. It’s amazing what you get used to.
My doctor is sending me to see a gastroenterologist and a dietician. Also, I have emailed my reproductive endocrinologist about this new news to see what he thinks and if I get this under control with a strict diet, if he thinks I have a chance again?
I was feeling pretty down in the dumps the first couple of days, but now I’m just happy that I might have the opportunity to feel better and get healthy, even though it’s going to be hard. And, holding out hope that this will change our infertility outcome. And, of course, I have to wait for the blood tests to be confirmed.
My advice to you
As you can see, even though I had GI symptoms, I was led to believe everything was fine. Please read up on celiac / gluten-intolerance and determine if it might be something that is affecting you. It affects 1 in 133 Americans and 97% of people with celiac go undiagnosed! If you have any question at all, get tested. It’s a simple blood test. Also, I read many people are asymptomatic, so even if you don’t think you have the symptoms and you are trying to conceive, just get the test. Why not? It won’t hurt anything. It’s just one more blood draw. Big deal.
Also, be aware that while many people don’t actually have celiac disease and will test negative, they still can have levels of gluten-intolerance, which makes it harder to diagnose. So, many people are in the gray area and a negative test doesn’t mean you don’t have a problem.
Questions for you
- Do any of you reading this have celiac or gluten-intolerance? Any advice?
- Do any of you reading this have celiac or gluten-intolerance, have been trying to conceive and had success after going gluten-free?
I went to see the gastroenterologist and they don’t think I have celiac?!? So nice that my regular doctor told me I did. I hate when doctors say things that they know nothing about. But, to be sure, I am going to have an endoscopy/biopsy soon. They think I have other GI issues, but we’ll do this test to make sure. I plan to post more about this later.