Poster Child For The Bristol Scale! Or, How I Came To Feel Better

[andreagrant]

Hiya everyone,

I have been lurking around the edges of this board for some months, asking a few questions here and there. Yesterday I got an "official" diagnosis of celiac from my doc and I thought I should share my story. Parts of this may be graphic, but who here hasn't had toilet nightmares!

Both my dad and his dad have celiac, so it's always been on the radar, but since I've never been underweight no one has ever suggested it or tested for it. By age 19 I was diagnosed with IBS-D, and we are talking *chronic* D. In my early 20s I noticed that if I ate homemade bread (I love to bake) I would suffer increased digestive chaos for several days.

Ten years passed, with me just accepting that terrible intestinal cramps (we are talking 10 out of 10 on that stupid pain scale doctors are always producing) and D were my lot in life.

Then I had a really stressful year where I was unable to really get proper nutrition (due to being at a remote field site for a job) and generally saw my health deteriorate. Digestive problems got worse. Five more years passed.

Then I moved to Switzerland, which turned out to be a lot more stressful than I had expected, and digestion gets even worse. I notice my stool is impossible to flush (partly due to a horrible toilet design they use here, where you "go" onto what seems like an acre of gleaming white porcelain, rather than into a bowl of water like standard US loos. But also, I now know, due to high fat content.). Chronic fatigue sets in, my social life dwindles to nothing, I'm now having bad gas and bloating (both the intestinal type that distends the stomach and also the water retention type that puffs up the face and hands). We are talking put on clothes in the morning, and they are at least a size too small at lunch. This entire time my asthma, which I was diagnosed with at age 12, has been steadily getting worse--at this point I've been on an inhaled steroid for about 5 years.

Finally, I have knee surgery in Oct of 2006, at age 34. My leg heals up, but I seem to have fallen apart as a human being--I have literally no energy and cry myself to sleep wondering if I'm going to have to drop out of grad school and move into my parents' basement because I'm unable to hold a job I'm so tired. I'm only working about 60%, and a social life is out of the question. My D, which had ventured into the realm of explosive at some point in the past few years has now turned oily, as though I was pouring vegetable oil directly into the toilet. After about 4 months of that it finally dawned on me that this was not really typical IBS and perhaps something else was wrong. Google immediately turned up celiac (or giardia or pancreatitis...) and a little reading convinced me that massive weight loss was no longer required for a diagnosis. I explained all this to my doctor who then ordered a biopsy. The GI he referred me to was incredibly patronising: when I was laying on the exam table and he was asking me about my symptoms while holding the 'scope in his hand, ready to insert it, he said, "Celiac usually results in weight loss and you, " here he reaches over and pats my stomach, "haven't lost any weight, have you?" He took only 2 samples and said everything was fine.

Deciding I'd had enough I went on a gluten free diet starting 3 Mar 2007. I started feeling a bit better a few weeks later. After about 6 weeks I had something that might have been a normal stool, but it had been so long since I'd had one I actually didn't know what they looked like! I then discovered the Open Original Shared Link and sure enough it looked good!

It's been up and down since then--days of feeling better and days of feeling worse. It's now been a full month of completely normal stool. I have tons more energy--I can work full time and also go out 2 or 3 nights a week with friends. My moods are more stable, and my anxiety has lessened. I have no gas or bloating (of either kind).

Unexpectedly, my asthma is pretty much gone--I've been entirely med free for over 3 months (a state I haven't seen since 1994)! I also find I can tolerate heat better--I've always hated hot weather (over 70F/20C)--I just felt like I was going to die, and I'd swell up like a balloon. I still don't really like it, but I no longer feel "heat rage" and I'm not swollen at all (seriously, I had summer and winter versions of all my rings--2 sizes different!!)

When I went to see my new doc (fired the old one when he got my "negative" biopsy* and suggested I eat more WHEAT BRAN and sent me on my way with basically a "sucks to be you with your IBS" diagnosis) yesterday I gave him the 2 minute rundown including the "negative" biopsy and dietary response, and he just said, in the most bored voice, "oh, definitely celiac" and wrote it in my chart. He was also excited that my asthma was cured.

The hardest part for me has been the loss of confidence in my health--I feel ok today, but I no longer can take for granted that I'll be healthy and able to work, and it's really scared me. I spent a pretty fearful, depressed winter this year wondering if my life was "over" at 34 because of my "IBS"! I'm also having to accept that I can't do field work anymore because I don't have any confidence in my health, but also because I find those situations don't accomadate dietary restrictions very well. I haven't had so much trouble with the idea of never eating gluten again--I think this is because I had to give up drinking alcohol some years ago (even longer story than this!!) so I'm already familiar with the isolation and awkwardness and feeling left out that comes with not partaking of something so central to our culture.

Anyway, I just wanted to say I feel GREAT and I am so happy to have finally figured out what was wrong with me--I suspect I've had sort of low grade or subclinical celiac most of my life, but our medical system just isn't equipped to recognize the early stages of the disease. For all the new people out there--just hang in there and it will get better! I feel incredibly lucky that I had such a fast and complete response to the diet. And a big thanks to all the friendly and helpful people on this board!!!!

*Just to remind newcomers, a celiac biopsy can never really be negative. Positive biopsy = celiac. Negative just means they didn't happen to find it but you might still have it, as damage is often patchy.

[corinne]

Thanks for sharing your story.

What kind of field work do you do? Just wondering if it might be possible to get back out there once you are feeling well for a while and feel very comfortable with the diet.

Besides gluten I don't eat any grains including rice, no dairy, no soy, no nuts, no potatoes etc. Two weeks ago, I spent a week in the field collecting water samples and algae from salt lakes in the desert. I ate canned fish and canned apricots for breakfast, canned chicken and canned carrots/beets/green beans/olives for lunch and dinner. It's not a very interesting diet, but I really like being out in the field. If you are just gluten free, it would be easier and there are a lot of backpacking meals which just require a small stove (the MSR pocket rocket fits in the palm of your hand) to heat up some water to add to the bag. If you can tolerate them, nuts, dried fruit and various energy bars can supply lots of calories if you don't have time to cook. If you are at a long-term field site and supplies get flown in, you might be able to request having a bag of your own food flown in ie rice, instant potatoes, dried or possibly canned veggies, dried fruit, some spices, dry beans, canned or dried meat/fish, a few treats, stuff that just needs hot water.

[BRUMI1968]

I just want to add something as well. Although my story differs in symptoms (keep the bloat, but reverse the D), I went undiagnosed for 35 years (diagnosed at 37) and now have been gluten free for more than a year, as has my whole family in support (in the house, anyway).

A couple months ago, I noticed that I had started doing more things I hadn't done before: camping, rock climbing, fishing, tennis, etc. I started to feel differently about my body -- no longer a mysterious enemy that might attack at any time, I now had understanding AND way less attacks.

The camping thing was a big step for me, not having liked camping as a child. I have done alright with it. I just went with my fly fishing class on a three-day camping trip to Hozomeen Mountain, Skagit River, and Ross Lake ("Hozomeen, Hozomeen, the most beautiful mountain I've ever seen" - Jack Kerouac). I got terrible D day two (not from gluten, but from too fatty a breakfast I think), so stayed in my tent, but I refused to go home, and stuck it out, catching a nice rainbow trout the next day.

I haven't mastered any of this stuff. I can just say that there is a profound change in the way your body works with you, the way you view your body, the way you use your body, as you get more and more well. I can even communicate more clearly now with others.

The way I look at it is this. I tried all my life to seek comfort, becuase I was terribly uncomfortable all the time. Now that I am not uncomfortable all the time, I am able to abandon my comfort zone, and seek out other sorts of pleasure/experience with my physical body, and with my communications with others -- I can take more risks on both spheres, because I'm not feeling weak and disconnected. When I came home from rock climbing for the first time bruised to the nines on both knees, they were like victory wounds.

Good luck.

[andreagrant]

Thanks for the encouraging words! I guess some of my fear is just from being new at all this still.

I study the climate and was at a station in Antarctica. My pessimism about future fieldwork is partly because they have a very strict medical exam before you can go (even my asthma was an issue last time around), and I haven't even looked into that. But I think its also a fear that I would get glutened and be so sick I couldn't do any work. These stations have a cafeteria where meals are provided and there isn't really an opportunity to cook (and the cooks are not always accomodating).

But I think you are both right--in another 6 or 12 months I might feel differently! Most days I'm just so grateful that I feel better that I don't care, but I guess it was getting to me the other night!

[amberleigh]

I don't really have any advice b/c I'm new to this...but wanted to say congrats! Sounds like things are really looking up for you It sucks about the doctor and misdiagnosis...I can't imagine what that must feel like. But good for you for taking charge of your health and going gluten-free! Take care.

[kbtoyssni]

Welcome and congrats on the diagnosis!

[Cruiser Bob]

Andreagrant

I study the climate and was at a station in Antarctica.

Are you familiar with JIRP. FGER? 1984 & 1991

Bob