Not surprisingly, to anyone who knows the depths of my desires to know everything, I have been reading and researching like mad about celiac disease since I was diagnosed 5 months ago. A side effect of this is that I now think everyone has it.
I’m exaggerating, of course, I know not everyone has it. But I think everyone MIGHT have it. And I struggle with when to tell them this, if at all. I mean, some friends, of course I can tell anything. Friends can tell each other the things we are thinking, even if those thoughts are a little silly. I feel so much better now, so different, that I feel like I might be doing people a favor if I plant this suggestion to them so they can ask their doctors about it, since doctors don’t seem to be keen on picking up the symptoms and suggesting celiac disease in general.
One of the things I’ve learned is that as far as autoimmune diseases go, it is extremely common. Estimates seem to hover around 1% (1/100) Americans having celiac disease. And the great majority of them do not know it. The average diagnosis comes after NINE years of seeking answers to strange symptoms. In my case, it’s more like 20. Perhaps more. As a child, I had a bout of extremely painful stomach symptoms that were never explained despite a lot of medical testing. Looking back, I can say this was probably a result of celiac disease, any my GI doctor agrees.
The symptom that frustrated me most over the years though was not digestion-related, but fatigue. Fatigue is so nebulous though. Being something I dealt with in varying amounts on and off for as long as I can remember, it was hard to say if it was normal or not. Try telling your doctor you’re fatigued. Especially if you’re overweight, as I have almost always been. They will suggest a lot of lifestyle ideas to you, which might not be a bad idea, but telling a fatigued person to exercise is kind of absurd isn’t it? For the last few years I have been so frustrated because I WANTED to exercise, and sometimes I would TRY to exercise, but I would just feel so darn tired! After forcing myself to do some moderate hiking, it would take me weeks to recover. But I doubted myself too – was this my fault because I did not exercise enough and I was out of shape? Or was excess weight making me tired? I really didn’t know. I would go to the doctor and cry about it because I felt so over-emotional too. I can now say that it was not my fault. All of this has resolved since adhering to the gluten free diet. Even though I am still out of shape, and I do get winded, I recover. I can do things that make me tired, and I will feel fine after a bit and ready to try again the next day.
There is nothing less motivating than feeling horrible fatigue for weeks after exercising, when you intend to exercise to feel better.
I can really ramble about this stuff. It’s going through my head a lot, noticing how different I feel now and thinking about symptoms I had that I never recognized as symptoms. I try not to talk about it to random people, and keep it to only the people I know aren’t annoyed by health/diet talk. But it’s not easy. I find that I WANT to talk about it because this is my life at the moment. This is what’s most on my mind. That is naturally what one gravitates toward discussing. I should probably get back in the habit of writing here again, if for no reason other than to dump these thoughts out of my head.
Anyway, despite how common celiac disease is, most doctors aren’t up on the latest research about it and are only looking for the “classic” symptoms (diarrhea and weight loss) even though the majority of people with the disease to not show these symptoms. I have heard from multiple people that their doctors refused to test them for it because they don’t have those symptoms. And this pisses me off!!! Testing me was MY idea, not my doctor’s. Thankfully I have a doctor who has generally been willing to go along with my requests to be tested for odd things, as I looked for an explanation for my symptoms. If I less acquiescent doctor, I probably still wouldn’t know.
So I kind of feel like it’s my duty to tell people what the symptoms are aside from the ones you might have heard about. In the US, we seem to be particularly bad at diagnosing CD. In Italy, for example, ALL children are tested for it before age 6! With something so common and potentially life-threatening, what would be the harm in testing everyone?
My cynical self believes that the reason we don’t do this in the US is because of For Profit health care and insurance. There is no money to be made off CD. Testing is expensive, and insurance companies would rather not pay. There is no drug to sell us when we are diagnosed. No surgery to suggest.
So even though you can easily Google it, let me just list for you the symptoms. The ones I personally had are in bold. These are from a book called Celiac Disease: Living with Gluten Intolerance.
- Joint Pain
- Hair Loss
- Heart Palpitations
- Shortness of Breath
- Iron Deficiency (Anemia)
- Weight Loss
- Weight Gain
- Reflux (Heartburn)
- Abdominal Pain
- Loose Stools
- Irritable Bowel
- Itchy Rash on Elbows or Knees
- Blistering Rash
- Numbness or tingling of feet or hands
- Difficulty with balance
- Behavioral Changes
- Brain Fog
- Still Birth
- Preterm birth
- Pelvic Pain
- Severe Menstrual Cramps
- Missed Periods
- Dental Enamel Problems
- Canker Sores
- Bone deficiencies
- Calcium deficiency
- Vitamin D deficiency
- Other Nutritional Deficiencies
- Sjogren’s Syndrome
- Multiple Schlerosis
- Type 1 Diabetes
Of course, with a list of symptoms like that, a lot of possible things could be causing them. But if you have multiple symptoms from this list, the book says, and I agree, you should be tested. If you have a first degree relative, you should be tested. And those who are of British or Irish descent are particularly at risk, although anyone can have it regardless of heritage or race.
If you have concerns about your health and your doctor dismisses them, you should do whatever you can to find a new doctor. Seriously. I hate this advice, because I’m as trapped on some dumb HMO insurance plan as anyone else, and I know it’s really expensive and frustrating to go around trying to find a good doctor. I know it’s not feasible for a lot of people. But if you can, do try. We need to advocate for ourselves. Especially WOMEN! Far too often concerns about our health are ignored as some kind of hypochondria. Oooo this makes me so angry when I think about it. Doctors should be working WITH us to maintain and improve our health, not standing in the way.
I know what it’s like to have a bunch of weird symptoms and doubt yourself, especially if you’ve lived with them for a long time and you have convinced yourself, that’s just the way you are. I had pretty much given in to the idea that this way “just the way I am” when I got my diagnosis. I am so glad to know there was a cause for all of these feelings and to have them disappear in such a short amount of time. Even though I still have moments where I just can’t believe I have Celiac Disease! And I can’t believe how much better I feel now and how much it was affecting my whole life in ways I didn’t even recognize. It’s crazy.