Saturday, January 9, 2010


Sometimes, I find it hard not to get angry. Not over what's happening now. Over the fact that so much of this has been going on for years - more than half my life - and it was never, ever diagnosed.

I had full body hives when I turned 16, the same time I was in highschool and had enough autonomy to gorge on the sugary sweets I was never allowed as a child. The only reason the hives stopped was because I had noticed they happened after I had my chocolate or my soda. And I stopped eating it. Now? Now I've found out that I'm allergic to sugar cane.

When trying to get help from our pediatrician, we mentioned the foods I would have before a reaction, and that they all seemed to contain caffeine. My doctor's response was to say that, first, you can't be allergic to caffeine, and second, I wasn't having an allergic response. The hives were always gone by the time we got in to the office.

She didn't believe I was having hives at all until we made sure to walk into the office when they were still swelling my eyes nearly shut.

And months later, when I tried the sugar again, the reaction was gone. So being an idiotic teenager, I went back to sweets and pretty much forgot about it.

I'm thinking about it now.

I'm thinking about the fact that 21 years ago, I was coming to my doctor with hives of unknown origin, that were a daily occurrence, and never referred to an allergist of any kind. That I lived with depression that hit me at the same time in my life, and a physical cause was never suggested as even a remote possibility. That I, at a healthy weight and with no other known issues, had carpal tunnel in both hands, tendonitis in both arms, golfer and tennis elbow in BOTH ARMS, plantar fasciitis in both feet, and a partially herniated disc in my neck and lower back, all showing up at the same time, with the cause unknown...and not one doctor thought that maybe this might point to something.

That maybe if someone is having a heck of a lot of problems in their body, there is something wrong that is causing this. If nothing else, vitamin deficiencies would come to mind, you would think.

Not to any of my doctors, I'm afraid. And that makes me so angry sometimes. I went through years where I could barely walk, where just brushing my hair was agony, where I was angry and sullen and horrible to the people around me as I felt like I was drowning in my own angst. And if just one - just ONE - doctor had taken a little extra time to wonder why I was having all these issues, maybe we could have started down the road to a solution.

When I'm in a bad place in my head, it's hard not to feel like I've been robbed of these years of my life. But then I try to remember: I have more to come where I won't have these problems. Probably a hell of a lot more than I would have if I hadn't finally BEEN diagnosed, and found an aware doctor who is helping me make sure I find out exactly what I need to do to stay healthy.

Still, I AM angry that things don't seem to have changed much. Right now, I'm thinking about the fact that 2 years ago, I was bringing my daughter to HER doctor, with fatigue and congestion that didn't seem to end, and she was never referred to an allergist, either. I was told that 'it sounds like hay fever allergies. Here's some over-the-counter medication you can give her' and that was it.

Without my own diagnosis and insistence on testing her, she never would have been diagnosed either. And even then, it was still: go gluten free. No insistence on testing her for anything further, either. I'm the one who had to get on the ball and think to myself that I wanted to make sure she wasn't allergic to anything else, especially as she seemed so much more tired since going gluten free. I'm the one who's been having the kids on a version of my own diet (with many more choices), and so I'm the one who noticed that yes, she has been doing much better without some of these foods. One of them seems to be doing something to her, even if we haven't discovered which one yet.

Needless to say, we have a new pediatrician. And we have an allergist now to go to, as well. I hope the appointment will go well. I hope he is aware of celiac issues, and is open to listening, because I'm looking for anything we're allergic to, intolerant to, or sensitive to.

According to my GI, celiac folk are genetically more predisposed to all three.

I know he can't find all of them - some of them aren't even his 'jurisdiction,' as it were - but what I don't want is someone who will say that if my child is not allergic to it, he should be able to eat it just fine.

As my first pediatrician did with dairy and my son. He wasn't allergic to dairy, so we should give him dairy. Of course, it makes him vomit if he drinks a glass of milk, and he's bloated and miserable with diarrhea if he eats cheese or any other major dairy product. We'd mentioned this several times, including the day we asked for testing, but it didn't seem to be memorable enough, so we had to mention it again. She reluctantly agreed that he might be intolerant to a protein.

She didn't seem to agree enough to list that information in the chart anywhere, however. Our new pediatrician is in the same practice, and he had no idea there were any dairy issues at all, because other than on the day we had the appointment, it doesn't look like she noted it down.

That's the type of thing that fuels my anger. Most people you talk to now have heard of 'celiac disease' or 'gluten free.' Studies are showing us that approximately one in every 133 people in the United States have celiacs. That's more than the sufferers of MS, less than people with diabetes. Over 2 million of us...and we still aren't being diagnosed.

I know it's hard for the doctors. The symptoms are all over the board, ranging anywhere from simple fatigue and 'getting sick a lot' to extreme weight loss and diarrhea. It's still an illness that needs a lot of research. And we have no drug companies that will make money off of us, so no advocacy material is heading to the doctor's office to help raise awareness.

Just we patients and our outrage and frustration.

I don't want my grandkids to go through this, too. Not that I have any, but I think about it. The medical system is changing slowly enough that I worry it is entirely too likely that they STILL won't have changed much by the time my own children have children.

I went all this time without help. My kids nearly did as well - my own diagnosis was because I requested the test be done; my doctor never suggested it. My daughter's diagnosis was due to the same: my request.

So was my brother's diagnosis, when he requested the tests after he heard about us.

And I won't be surprised to hear that patient advocacy is what has helped my cousin's child as well, who has been having gut issues for years now, has lost weight, and never once has her pediatrician suggested testing for celiac for her, either. But after she heard about our family, she's having her daughter tested as well.

I hear that many doctors hate the internet. That so many people go and 'self-diagnose' and try crazy things that hurt their bodies rather than helping. That's true. But what does it say about our medical community when some of us are self-diagnosing and we're right. It's not like the doctors have not had the opportunity to get the same facts that we have. Most of us would LIKE the chance to tell them what we're worried about.

Of course, the last studies I've seen say that we rarely get that chance. Whether it's HMO's and rising medical costs, personality, training, or all that and more...a lot of our doctors are losing us between the cracks. Too many of them - and I base this on personal experience -aren't listening, so they aren't getting all the facts, so they don't make the diagnosis that we need in order to get healthy.

So me? As long as it's done responsibly, I'm happy with self-diagnosing, and I'm ecstatic over the internet. I can use it, and it doesn't have me on a time limit so that I only give it half the facts. So the answers I get help me know what questions to ask of the doctor, and what tests to ask for if I'm not satisfied with the doctor's explanation of why I might be wrong. Right now, I've been wrong only about as often as my doctors were. And I was right more often.

That's a sad statement.

And I am writing back to these doctors- to ALL of them - to let them know. I am going to write letters to all the doctors I've had over the years who are still practicing, and reminding them of what symptoms I had when they saw me, and let them know what it turned out to be in the end. I don't know that it'll do any good. It may be completely ignored. But I feel like celiac disease and food allergies like this - mild ones, in other words - don't have enough advocates to make an impact. So I'm helping the cause. I'm hoping that some time, some day, that doctor I sent a letter to will have a patient with similar symptoms and that THIS time, it will occur to him (or her) that maybe the problem is food related. And better yet, the preliminary test to see if this is a possibility can be money-free, drug-free, and non-invasive: an elimination diet. Heck, maybe the problem is even celiac disease.

Maybe I, the doctor, should let them talk a little more so I can get a better picture of what this is.

And maybe if enough of us do this, it can start to make an impact that will help us all.

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