Warning — this post will contain health information (I will keep it fairly toned down) and rants directed at the “traditional” medicine system in place in the United States, as it relates to certain health problems. If you don’t want to read about health stuff, you might want to duck out now.
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In the past year, I found out I have dermatitis herpetiformis (not actually related to herpes, despite the name), which is actually related to celiac disease. But finding this out was difficult and frustrating, as is the case for most people who also suffer from these. It shouldn’t be that way.
For over a year, I had lots of stomach problems. My stomach was always bloated. I had very weird, deep back pain, that was not muscle or bone related. I felt tired and sluggish a lot. I had “bathroom” stuff as well that scared me.
I went to my doctor several times. I was put on prescription acid reflux medicine. I had blood tests. I was poked and prodded a couple of times, and always ended up feeling like the doctors were making it out that I was crazy. I had a colonoscopy, and the GI doctor was just awful. He told me when I got my results and had my follow up, that he couldn’t see anything wrong, so there wasn’t any problem. So, I’m making up all the issues I’m having??
And this was after I had a bunch of stomach tests a few years before — ultrasound, CT scan, MRI, some test where I had to drink that nasty radioactive chalky liquid. They all came back fine, which is nice, except it didn’t explain why I was having these problems.
And then my skin problems started. I have very sensitive skin, and I’ve always had eczema, but all of a sudden it started getting MUCH worse, looked different, felt different, acted different. Showering would make me cry because it hurt. I felt like I wanted to tear my skin off. I started going to a dermatologist. This was just as bad if not worse than the GI specialist. The dermatologist kept insisting I had eczema and I just have dry skin that I need to keep moisturized. He just kept giving me different skin creams, most of which didn’t touch the problem. And all the while, I feel like I’m going out of my mind, because the only solutions were just more medicine, and I felt like they weren’t really listening to me or understanding how bad I felt. I wanted to know what was causing all of this, and no one was helping me.
I finally went to a naturopath, who immediately put me on an anti-inflammatory diet, or a very strict elimination diet, for about 6 weeks. It was really, really hard, but suddenly…I felt better. My skin started clearing up. My stomach problems went away. I stopped feeling so sluggish. Then, after I had been on the diet for about 6 weeks, I had to start adding food back in. And as soon as I added wheat and gluten back in, BAM! Stomach problems came back. Skin problems came back worse than before. When I went back to the naturopath, she told me that she suspected I had celiac disease and dermatitis herpetiformis as soon as she started talking to me. But yet, no other “traditional” doctor ever suggested I might have a food allergy that might be making my body attack itself. No other doctor thought the skin problems and stomach problems might be related.
And this is where my rant really starts. Celiac disease is VERY common, the National Institute of Health believes that 1 in 100 people have celiac. Many are undiagnosed. And most people who have it, go through similar experiences, if not worse than what I went through before they are finally diagnosed. And through it all, they are made to feel like they are crazy or they are making up the problems. Same is true for DH.
I don’t know exactly why this is, but I think it has to do with the traditional Western approach to medicine where you treat the visible symptom, not necessarily look for the underlying cause. And medicine is so specialized, that skin doctors don’t ever consider that GI problems could be related, and vice versa. They aren’t trained to treat the whole person. And then there’s the fact that you can’t treat Celiac Disease with a simple pill. It requires a lifestyle change. It requires work on the part of the patient, constant work. And you have to treat it by what you eat and what you don’t eat, which is not how traditional medicine seems to work here. So people are left going through test after test, feeling miserable and not knowing why. I’ve heard of people asking their doctor to test them for Celiac (there is a blood test) and being told that is not a real problem, or that is certainly not what is causing their health problems.
There is no real point to all of this, other than a heartfelt wish for traditional doctors to really listen to their patients. To try to find the root cause of the problem, and not just the surface solution. And that people who have not yet been diagnosed to get the answers they seek and know that there are doctors out there who do listen, who do understand, and that you really can feel better.
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Flying Mermaid 