The first gastroenterologist I went to see was probably in his 50s. This was my first sign that this appointment probably wasn't going to go very well. I know I should judge people based on age, but when it comes to doctors I've found a few things about their credentials and time practicing that can seriously affect the way they see Celiac Disease. One thing you have to understand about Celiacs is that only in the recent past has it come to light A) how common it is, and B) how much the symptoms can vary from person to person.
Since I had been told to consult with a GI doc, I didn't really have any specific questions for him. So, when I went into the appointment he asked why I was there, so I told him pretty much that I had gotten the blood test a few months before and had gone gluten free and needed to see where to go from there. He told me he didn't think I had it because I didn't have the typical symptoms (diarrhea, malnourishment, etc.), and if I wanted to have the endoscopy to confirm the diagnosis (the diagnosis that he pretty much rejected, even though my antibody levels were so high), that I needed to do a gluten "challenge" for about 3 weeks before the scope. I wasn't about to make myself sick again, so I decided against that.
All in all, appointment with Dr. #1 was the worst $50 and 15 minutes of my life. I got nothing out of it except the impression that he thought I was an idiot and he had better things to do with my time. So I decided to just do things on my own and continue being GF, since my impression of doctors so far was that they suck when it comes to long term treatment and managment of Celiacs.
Thursday, January 28, 2010
Saturday, January 23, 2010
The results
I was driving to work a few days after my appointment with the allergist when my phone rang. I remember exactly where I was when he said, "I got your blood test results back, and surprisingly they were positive." I didn't understand all of the implications that would have until later; and I'm still realizing some of them now. Unfortunately he didn't give me much else to go on except that I had a high TTG antibody result. (TTG stands for tissue transglutaminase, antibodies to this enzyme are specific to Celiac Disease, but this test isn't 100% accurate). I found out later that my antibody levels were almost 200, where anything above 30 is considered a strong positive.
That night I went out with my best friend for a "last meal" of sorts. We went to a place that specialized in crepes. I remember that I did get sick from the meal, and that it wasn't my favorite meal ever, but I was still grateful for the support of my friend. The next day turned into a whirlwind of trying to sort out what I could and couldn't eat. Thankfully I had a Celiac friend who was willing to help and took me grocery shopping later on.
One of the things that has made getting a "gold standard" diagnosis was that the doctor who told me my results failed to mention that I needed to follow up with a gastroenterologist for a biopsy before starting the GF diet, so that my diagnosis could be confirmed. Speaking with my Celiac friend I found out that not everyone has that test done, but I eventually decided that I wanted to be sure so I made an appointment with a gastroenterologist about 3 months after going GF.
That night I went out with my best friend for a "last meal" of sorts. We went to a place that specialized in crepes. I remember that I did get sick from the meal, and that it wasn't my favorite meal ever, but I was still grateful for the support of my friend. The next day turned into a whirlwind of trying to sort out what I could and couldn't eat. Thankfully I had a Celiac friend who was willing to help and took me grocery shopping later on.
One of the things that has made getting a "gold standard" diagnosis was that the doctor who told me my results failed to mention that I needed to follow up with a gastroenterologist for a biopsy before starting the GF diet, so that my diagnosis could be confirmed. Speaking with my Celiac friend I found out that not everyone has that test done, but I eventually decided that I wanted to be sure so I made an appointment with a gastroenterologist about 3 months after going GF.
As a side note, I have made a few observations about myself during this whole ordeal. The first is actually an observation that my brother made while I was detoxing from gluten (took about a week after starting the GF diet for this to subside). I was at my brother's apartment for some reason or another, and I farted in front of him (we're family, and I have the sense of humor of an 8 year old boy, so farting is quite hilarious to me). About 3 seconds later my brother exclaims, "That smells like brimstone!" That was definitely one of the most descriptive responses I've ever gotten to farting in front of someone. I told this story to a guy friend of mine once and he was actually jealous of my farting power.
The second observation I've made is that I'm pretty sure I subconsciously knew that gluten was what was making me sick when I was a kid. I hated eating all things gluten centered; hamburgers, hot dogs, sandwiches, pizza, spaghetti, cake (I only liked the frosting), even pastries. Now that I've gone GF I have occasional cravings for these foods, especially pizza and sandwiches for some reason. Thankfully I have found some amazing pizza places around the Denver area that have GF options, and some good bread to make sandwiches with.
Next time: gastroenterologist #1
Thursday, January 21, 2010
The beginnings
Even when I was little I had digestive issues. I used to drink mineral oil nightly before going to bed as a laxative, and prune juice was always on hand in case things got too "tough." I remember one time after eating a piece of chocolate cake just lying on the couch because I was so nauseated. Sometimes just the taste of a pastry would make me gag a little bit.
Once I started college things started to go downhill. I can't pinpoint exactly when it was that I started getting fed up with feeling sick all the time, but I eventually started visiting the doctor on a more than annual basis to try and figure out what was wrong with me. My first diagnosis was Irritable Bowel Syndrome (IBS). Well super, something that can't be tested for and that doesn't have a specific treatment except increasing water and fiber intake. Things still weren't going to great when I got another diagnosis; Gastroesophogeal Reflux Disease (GERD, or acid reflux in fancy terms). Ok, that can be medicated. I started taking Zantac at a regular dose. That didn't work, so they doubled it. Still nothing, so they doubled that. Still nothing. So then they change my prescription to Prilosec. I'll admit I didn't always take it as directed (I was in college, I couldn't exactly take a pill 30 minutes before eating, I snacked all the time, no real meals). Go figure, Prilosec didn't work either. I was still getting nauseated all the time, and the IBS symptoms were driving me crazy. Multiple times a day I'd start feeling like I needed to go, so I'd hit the bathroom hoping this was my lucky day and I'd actually be regular. But I would quickly realize it wasn't my lucky day, and all I'd get was something not even close to being satisfactory for all the nerve impulses it was sending.
I was talking with a friend of mine when she first mentioned Celiac Disease. She told me about a previous aquaintance of hers that had similar symptoms and ended up finding out what the real cause was. By this point I was determined to figure out what was wrong with me. I knew my body well enough to know that there was something more systemic going on that IBS and GERD. So once again I return to the doctor. I ended up seeing a nurse practitioner (nothing against them, I actually prefer them). When I asked her about Celiac Disease she had to leave the exam room and ask someone about it. When she returned she promptly told me that wasn't in the realm of possibilities for me and give me another handout about IBS.
Not being discouraged I decided to take another route; I went in for allergy testing, specifically for foods. The allergist tested me for foods on my left arm and environmental allergens on my right. Absolutely nothing reacted on my left arm, but my right arm had multiple reactions. For as long as I remember I never suffered from seasonal allergies (although now I do oddly enough). After he went over the results with me, I decided to give Celiacs another shot. Thankfully he was a bit more knowledgeable than the previous medical professional I had asked about this possibility. He asked my symptoms (nausea, constipation, etc...), said he didn't think I had but was willing to test me for if I wanted. Of course I agreed, it's just a simple blood test, shouldn't be too difficult.
Once I started college things started to go downhill. I can't pinpoint exactly when it was that I started getting fed up with feeling sick all the time, but I eventually started visiting the doctor on a more than annual basis to try and figure out what was wrong with me. My first diagnosis was Irritable Bowel Syndrome (IBS). Well super, something that can't be tested for and that doesn't have a specific treatment except increasing water and fiber intake. Things still weren't going to great when I got another diagnosis; Gastroesophogeal Reflux Disease (GERD, or acid reflux in fancy terms). Ok, that can be medicated. I started taking Zantac at a regular dose. That didn't work, so they doubled it. Still nothing, so they doubled that. Still nothing. So then they change my prescription to Prilosec. I'll admit I didn't always take it as directed (I was in college, I couldn't exactly take a pill 30 minutes before eating, I snacked all the time, no real meals). Go figure, Prilosec didn't work either. I was still getting nauseated all the time, and the IBS symptoms were driving me crazy. Multiple times a day I'd start feeling like I needed to go, so I'd hit the bathroom hoping this was my lucky day and I'd actually be regular. But I would quickly realize it wasn't my lucky day, and all I'd get was something not even close to being satisfactory for all the nerve impulses it was sending.
I was talking with a friend of mine when she first mentioned Celiac Disease. She told me about a previous aquaintance of hers that had similar symptoms and ended up finding out what the real cause was. By this point I was determined to figure out what was wrong with me. I knew my body well enough to know that there was something more systemic going on that IBS and GERD. So once again I return to the doctor. I ended up seeing a nurse practitioner (nothing against them, I actually prefer them). When I asked her about Celiac Disease she had to leave the exam room and ask someone about it. When she returned she promptly told me that wasn't in the realm of possibilities for me and give me another handout about IBS.
Not being discouraged I decided to take another route; I went in for allergy testing, specifically for foods. The allergist tested me for foods on my left arm and environmental allergens on my right. Absolutely nothing reacted on my left arm, but my right arm had multiple reactions. For as long as I remember I never suffered from seasonal allergies (although now I do oddly enough). After he went over the results with me, I decided to give Celiacs another shot. Thankfully he was a bit more knowledgeable than the previous medical professional I had asked about this possibility. He asked my symptoms (nausea, constipation, etc...), said he didn't think I had but was willing to test me for if I wanted. Of course I agreed, it's just a simple blood test, shouldn't be too difficult.
Wednesday, January 20, 2010
A little science lesson to start
Since this is my first post I think I'll explain what the plan is (with a few disclaimers along the way). I was diagnosed with Celiac Disease a little over 2 years ago. I want to share my journey with others. This may provide to be an encouragement through your own journey, or an encouragement to get tested, or it's just going to gross you out and wish you have never heard of Celiacs. I am a very open person about my struggles with this disease, more so with people I know can handle it. I have had agonizing "episodes" and fluctuated weight and gotten so constipated my stomach would be distended. If you have struggled with Celiacs, or know someone who has, you can understand the physical and emotional toll it can take on you without the proper support system.
For those of you who are unfamiliar with Celiac Disease; here's a quick run down. Celiac Disease is an autoimmune disorder (like Lupus and Rheumatoid Arthritis). But, unlike other autoimmune diseases, it has a treatment that will theoretically rid you of all symptoms. This treatment is the complete removal of gluten from the diet. Gluten is a protein found in most grains, but the particular gluten proteins found in wheat, rye, and barley (along with some lesser known relatives: bulgur, couscous, spelt, einkorn, emmer, farina, graham, kamut, matzo, mir, seitan, semolina, triticale). Gluten is a problem for those with Celiacs, because the autoimmune reaction happens in the small intestine when gluten is ingested. In other words, when someone with Celiac Disease eats a piece of bread made with any kind of gluten containing flour the immune system responds by attacking the lining of the small intestine (not something it's supposed to do). Because of this autoimmune reaction Celiacs tend to have mostly digestive symptoms, but recently researchers are starting to find that there is a much wider variety of symptoms. Sometimes it can be something as simple as anemia, to osteoperosis, to lymphoma. Doctors used to think (and some still do) that unless you have diarrhea all the time there's no way you could possibly have Celiac Disease (I met one of these doctors during my wanderings).
Now of course, I didn't cover everything. There are a multitude of websites out there that provide information. There's the Celiac Sprue Association or the Celiac Disease Foundation. There's also a lot of research being done at the Mayo Clinic. And then there's my favorite website; WebMD.
With all of that said, I hope that you will stay tuned for the beginning of my story.
For those of you who are unfamiliar with Celiac Disease; here's a quick run down. Celiac Disease is an autoimmune disorder (like Lupus and Rheumatoid Arthritis). But, unlike other autoimmune diseases, it has a treatment that will theoretically rid you of all symptoms. This treatment is the complete removal of gluten from the diet. Gluten is a protein found in most grains, but the particular gluten proteins found in wheat, rye, and barley (along with some lesser known relatives: bulgur, couscous, spelt, einkorn, emmer, farina, graham, kamut, matzo, mir, seitan, semolina, triticale). Gluten is a problem for those with Celiacs, because the autoimmune reaction happens in the small intestine when gluten is ingested. In other words, when someone with Celiac Disease eats a piece of bread made with any kind of gluten containing flour the immune system responds by attacking the lining of the small intestine (not something it's supposed to do). Because of this autoimmune reaction Celiacs tend to have mostly digestive symptoms, but recently researchers are starting to find that there is a much wider variety of symptoms. Sometimes it can be something as simple as anemia, to osteoperosis, to lymphoma. Doctors used to think (and some still do) that unless you have diarrhea all the time there's no way you could possibly have Celiac Disease (I met one of these doctors during my wanderings).
Now of course, I didn't cover everything. There are a multitude of websites out there that provide information. There's the Celiac Sprue Association or the Celiac Disease Foundation. There's also a lot of research being done at the Mayo Clinic. And then there's my favorite website; WebMD.
With all of that said, I hope that you will stay tuned for the beginning of my story.
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