Post-cleanse

About a month or so into the cleanse I ended up traveling for a week. Traveling and being on such a strict cleanse was not a very good plan, but things were already set so I tried to stick with it as much as I could. Amusingly, the straw that broke the camel's back for me was coffee. Part of the cleanse was getting all stimulants out. I love coffee. I consider Starbucks to be one of my vices.

After another visit with the chiropractor I decided to just go back to doing things on my own. I tried to add in a couple supplements he had suggested, and some I had found doing research. But unfortunately I was still having major ups and downs. For about a month I'd feel great, and then I'd go into a slump and start getting constipated and feeling gross, and I couldn't find anything that would stop that from happening. (As a side note, if you're looking for a natural laxative, Senna tea is the best. I usually mix dried senna, peppermint and ginger and make tea with a little honey. Soothes and gets things moving).

During all this time I had been attending college to get my bachelor's degree. At the end of 2008 I was set to graduate (the cleanse happened in the summer of 2008). Towards the end of the year I was starting to prepare to move out of my parent's house, which meant not being under their insurance anymore. I still really wanted to get the biopsy done, even though I had been GF for a year, I wanted to give a gastroenterologist one more try. I did some research and found an osteopathic gastro doctor. I made and appointment, and he was one of the first doctors to actually be helpful! It was like a breath of fresh air. Now of course the only real management tool he could give me was to not eat gluten, but he did prescribe me a medication for my IBS (which ended up causing problems, but that's for another post). He also was willing to do the biopsy without making me do a gluten challenge. Something that I was not going to do. There was no way I was going to make myself sick again around the end of my last semester, let alone ever.

The day came for the biopsy, fasting was involved of course, but that was fine since I don't normally eat breakfast. A bad habit, I know. I was prepped and given the medications, which worked amazingly fast and amazingly well. Woke up afterwards, recovered, and went home. Of course, I got pictures too, which I posted on my facebook to gross out all my friends :).

When the doctor told me the results, he said that there was still a slight amount of damage, and I had a confirmed diagnosis of Celaic Disease. This may sound odd, but I was so glad he said that! I didn't want to have to deal with doctors not being willing to treat me for Celiacs because I hadn't done the biopsy. Also, I love learning medical stuff about myself, partly because I love science and medicine, and partly because I feel like I'm a medical anomoly and I want to know everything that is wrong with me.

Gastroenterologist #1

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.

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.

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