GF Week 3

Sun Oct 25, 2010

Ate at my mentor's house on Sunday, which was my first attempt to eat at someone else's house. I was anxious all day about it, even though he had asked me for pointers to help prep correctly and all.

The biggest issue that is difficult to communicate is that porous materials like wooden or plastic cutting boards, spoons, etc can hide gluten and contaminate other food. I told him to think of flour like raw meat. Anything it comes in contact with needs to be cleaned thoroughly and segregated from anything I would eat. It's hard to tell people how careful they need to be, and I really disliked having to be that person to be so difficult. I guess I'll just have to get rid of it.

So I brought a side dish to share so I knew at least that would be safe. Luckily, my mentor went to great lengths and actually did all his slicing of ingredients on plates. We had carnitas, with all the veggies separate, so it was pretty safe. He even kept the containers of chicken broth and other products so I could check them. I also brought ice cream for dessert, which was fortunate because my labmate had baked a cake that looked delicious (but deadly for me). I managed to enjoy the dinner, miraculously. That really made my week. Over time, I'm realizing this will be doable. 

GF Week 2

Oct 17-23
It took all week to really get back on track and begin to feel good again. It's crazy that getting exposed can do so much damage, but it seems true based on that one experience last week.

My first week entailed eliminating gluten as an ingredient from my diet, but this week I began to investigate my medications and certain foods that say "manufactured in a facility that also processes wheat". My doctor told me to avoid that for now, so I can get a baseline of health. Then, since I was symptomatic before going GF, I should be able to notice if the minimal exposure from shared facilities might bother me or not. It's frustrating though... even Trader Joe's and Fresh & Easy say some of their stuff is gluten free, but then are made in facilities or on machinery with wheat. I'm keeping my fingers crossed I can re-introduce them again!

My stress level has felt strangely lower this week, even though emotionally, I've been getting into gloomy moods more easily. I think that's just because it's tough to find foods that are satisfying all day. I keep going to grocery stores looking for things to stock up on. Eventually, I'm sure I'll get used to it all. I do think that having a healthier GI system must be reducing the tension in my body though. So that's good. Hopefully it will keep getting better. Avi says I'm too anxious to see results. I guess I just want to know it's all worth it.

On Friday, I got a very odd voicemail from a number listed as Newton, MA. The voicemail said, "You're the winner! You're the winner of the gluten free basket at Whole Foods! Call us back and you can come pick it up."

Very skeptically, I called the number back. I was thinking, could someone have stoled my info and is now scamming me for a credit card number or something? But the chirpy voice on the other line answered "Whole Foods" and seemed more clueless about the situation than I was.

The girl on the other side said my name, and said, "Oh, yes, you're in Phoenix? Yep, you can pick it up whenever you get a chance".
I replied, "At which location?"
She said, "Oh it's the Newton location, which is right between the streets..." And I interrupted her, saying, "But I live in Phoenix... like 3,000 miles away"... "Oh, that is strange", she said.

Turns out, my friend Hammy had been at Whole Foods that day and saw the contest. I guess she thought it was a national contest? Anyway, she kindly offered to pick it up and mail it to me, which is very exciting! I'll be sure to share what came in it once it arrives.

Glutened...?

Sunday, Oct 17, 2010


Last night, I made a lovely meal of citrus-marinated tilapia, jasmine rice, and broccoli. A great, carefully-checked gluten-free meal. Just before dinner was ready, I took a CVS-brand version of Excedrin because I had had a headache all day. Not sure what caused it, but within 15 minutes after eating, I felt funny. My belly gurgled, I felt bloated, and I got nervous. Could I have had gluten?


In the Celiac world, they call this "getting glutened". Basically, if you have Celiac, gluten is treated like poison in your body, so it's the equivalent to food poisoning if you have enough of it. I've read that as you eliminate gluten from your diet, you become more and more sensitive to any amount of it. Well I'm not sure if I'm already that sensitive or what, but I was up sick till 5 am. The pain was quite surprising, and different than my past symptoms. All of this is consistent with what I've heard "getting glutened" can be like. I looked up remedies, and basically they say to drink lots of water and green tea. But between the pain and the caffeine in the tea, I was wide awake all night watching bad TV to distract myself. This sucks. 


I'm trying to remember that it will only get better from here, but it's tough. I got almost no sleep and feel completely wiped today. The best thing I can figure is that maybe the medicine I took had gluten in it. Apparently CVS generics cannot guarantee being gluten-free as they change depending on the batch. Ick. So just to be safe, I think I'll have to go out and buy more reliable, brand-name (and unfortunately more expensive) meds. Awesome. 

I'm trying to keep looking for the silver lining in this whole experience. At least I know the cause of being sick and am in control of getting better. I just have to work hard to educate myself. It's nearly 24 hours after the start of this first episode, and I'm just looking forward to recovering and trying again. I read that gluten in your system is sort of like falling down and scraping your knee. If you keep falling down, your knee will never heal, but if you stay away from the pavement for a few days, it starts to heal quickly. I think this week, I'll need to try to be extra careful and basic with my diet. Maybe the memory of this weekend will help motivate me.

GF Week 1

Oct 9-16, 2010

My first week of going gluten free was...challenging, actually. I started out pretty good and even refused the offer to have one last "good" beer from friends. But without even thinking, I ate some candy corn I had purchased and placed in a cute little pumpkin bowl near my front door. I had a couple handfuls... bad idea. I was sick for a couple hours on Tuesday morning, but I popped some meds and managed to make it through the day.

So far, the biggest change I've noticed is that my energy is much higher. I've been requiring probably a full hour less of sleep per night, and still wake up ready to go. I had been barely making it till 10pm and sleeping till 7 or so every night, but this week I had to make myself go to bed by 11 or even 12, and would be wide awake by 6:30. Pretty dramatic. Maybe that's why I've been drinking more and more coffee lately...

After my little slip-up on Monday, I started to notice my digestion stabilizing on Wednesday. I was just less aware of digestion that was happening inside me, which was a very welcome change. I used to eat and want to sit quietly or even lie down to help the process. Now I'm starting to learn I can eat and keep going through my day without grumbling and gurgling going on. I had a day there where I felt like digestion slowed too much and I felt really full, but things seemed to equalize after that, and I'm feeling good!

On Thursday, I had the official biopsy results finally come in. I have Celiac disease. Big surprise! But it's actually pretty good to get that final confirmation. On Friday, I had my follow up with Dr. Patel, my new GI doc, and he told me I am level 3B, which apparently indicates that I have all three possible signs of Celiac damage: intestinal inflammation, dulling of the villi, and widening of crypts (the openings between the villi). So basically there's no doubt about the diagnosis. I've been reading some books I ordered on Celiac, and am learning that my diagnosis is amazingly straightforward, compared to the average Celiac. So I'm very thankful about that. The doctor also said that the healing process can be very rapid, so I might start getting much better within a few days, even with all the damage he saw. Pretty amazing!

Day 27: Goodbye Gluten

Oct 8, 2010


After nearly a month of waiting to act on my Celiac blood test, I get to finally rid my body of gluten! I never thought I'd be so excited to get started, but I'm sure it's good that I feel that way.


For the "Closing Ceremonies" of my Tour de Gluten, we returned to Chompies for my final glutenous meal. It was quite a fest...


While we were waiting to be seated, my friend handed me a sample of chocolate fudge brownie at the bakery. As I put it in my mouth, she yelled, "Don't do it, it's gluten-free!". Ironically, the one product in the whole bakery that was gluten-free happened to be the sample. But reassuring I can still find a decent brownie after today.


Anyway, we proceeded to order everything imaginable with wheaty goodness: Matzo ball soup with noodles and a bagel chip, Jewish sliders (potato latke, brisket, mini challah and au jus), and  a massive Reuben. I had a bite of my friend's granola crusted french toast too. Mmmm.


 Both Avi and I felt like we were still digesting 2 days later. Project gluten accomplished!

Day 27 - The Transition Begins!

Well, good news. Sort of. We have a pretty solid answer to this giant question mark that's been hanging over my head. The endoscopy was a success and the doctor felt pretty strongly that I have Celiac.

That damage they were looking for? It was there! Is it odd that I'm happy about it? I think the suspense of waiting has gotten to me. To me, it's clear I have Celiac at this point. So I guess I was just waiting to get the green light on making a lifestyle change so I can feel better. Anyway, I excitedly got to look at photos of my intestine and-- what do ya know-- there was scalloping just how that photo I posted looks. Between that and the high levels of antibodies in my blood, the doctor was pretty certain. We still have a week till the biopsy results come back, but I can start transitioning now.


So today we're having a Goodbye Gluten dinner at Chompies. It makes me sad to have this condition, but I'm more than ready to start feeling good... maybe for the first time in a very long time. 


I started looking at the things you need to do to make your kitchen gluten free and it's daunting to say the least. At least one document I was reading said you need to keep exposure down to less than 5 parts per million. That means keeping gluten free ("GF" in the gluten-free world) foods separate from other foods. It means replacing my cutting boards and wooden cooking spoons in case bits of gluten could be lurking inside. And it means buying new plastic food storage containers that are dedicated to remain "uncontaminated" by gluten. I think it will be a process. But I'm happy to start moving forward.

Day 26- Endoscopy Day

Thur 10/7

Today's the day! I just want to get it over with.
Lots of people are asking what they're looking for. Here's what I understand (anyone feel free to correct me if there's anything inaccurate):
Basically, there are two things. The first is they want to look at the condition of the small intestine. If it's Celiac, they might be able to physically see scalloping on the lining of the intestine (the top picture shows healthy anatomy, and the bottom is what it looks like with Celiac).
Sometimes that damage isn't visible though. So they also plan to take a biopsy of the lining, which contains villi, finger-like projections which absorb nutrients from our food (shown on the right photos). If the villi look short and worn down, that means it's Celiac. Celiac results in damage of the villi, so this is a definitive diagnosis.
I'm actually hoping for the diagnosis because otherwise I think it's going to be a long, difficult road to figure out what's wrong. I've been feeling so much better just from reducing gluten, I'll be really surprised. But it might take a couple weeks to get the biopsy results. This process drives me crazy!

Day 25

Wednesday 10/6

Last day before the endoscopy. We decided to have a gluten-riffic dinner of my favorite pizza from Oregano's: Rosemary Chicken and Potato Pizza. Mmmm. Plus Avi threw in an order of bruschetta. I started to say I'll really miss bruschetta and then I realized I'll be just as happy with caprese salad and other stuff without the bread. But it was still tasty.

A bit nervous about having anesthesia (they didn't want to just use sedation because I woke up in the middle of my wisdom tooth removal). Don't wanna wake up with a tube down my throat, so they plan to bring in an actual anesthesiologist. I know it's a super minor procedure, so as long as I react okay from the drugs, I think I'll be good.

Days 23 & 24

Monday & Tuesday 10/4 & 5


Thanks, Julia for sending me this article about the many uses of the rice noodle: http://well.blogs.nytimes.com/2010/10/01/use-your-rice-noodle/. I'm excited to try the many recipes they provide!

Realized that I only need to keep eating gluten for a few more days. That actually made me panic because I still haven't had lots of the stuff I've listed for myself. I guess even if they see damage just by looking, I can still transition myself away from gluten. I'm torn because I don't really feel like feeling ill, but this is my last chance to eat stuff like matzo ball soup, soft pretzels, and deep dish pizza (at least as we know them in true form). Maybe some Chompies will be in my future this week. Do I hear Jewish sliders (brisket and latkes on mini-challah bread) and matzo ball soup?

Day 22- A quick hello

Sun, 10/3/10

Some friends have told me they're reading my blog lately, which is very cool to hear. I sort of thought this would be a project mostly for myself, as a catharsis, and hopefully a couple people might read it and know a little about where things stand. But it's really reassuring knowing that others are out there listening. If you wouldn't mind leaving me a comment occasionally, just so I know you're out there, that would be very cool. Thanks for being with me along this journey.

Day 21

Saturday, 10/2


Avi and I had a lovely dinner last night of steak, wasabi mashed potatoes, and wine. I opted for red wine, since I've been feeling better lately and since it goes so well with red meat (I usually drink white wine since it causes fewer headaches). Today, I'm paying for all that wine. I've got a killer migraine. Damn it. 


Took an Imitrex, and it didn't seem to touch it. Crap. So much for my streak of feeling awesome. This is depressing. I spend most of the day in the darkness of my bedroom, listening to crappy weekend TV. I had plans to go to a dance class, go shopping, and go watch the football game. All down the drain. Days like today remind me that I definitely have a lot to gain from trying gluten-free eating. I've heard it can cut down on migraines. I'm trying not to get my hopes up too much though. 


Fortunately, the migraine starts to dissipate (finally) by about 8pm. So much for my day. But the good news is that it looks like I'll feel better tomorrow. That's the ever-so-slightly silver lining. 

Days 16-20

Mon-Fri 9/27-10/1


Another week, and I've managed to achieve stasis with gluten until this endoscopy. Well, until I decide to have a beer one night on a relatively empty stomach. That was bad. Digestive system was very unhappy with me, but just for a couple hours. It's really empowering to know that any bad symptoms won't last anymore, with my current diet. I just hope it's enough gluten to keep damaging myself enough to see it in the test. Probably is enough, since I have slip-ups like I did with the beer.


Spending long days at work and school, since I can nowadays. I definitely have more energy too, so the combo of energy and lack of pain have made all the difference in the world. Not even sure how things can get better if I go totally gluten-free. But I'm assuming they will get even better. That's pretty exciting.


I went to Whole Foods the other day, and their selection of gluten-free stuff is definitely reassuring. Although also kinda disturbing. They have all kinds of gluten-free breads and baked goods, including "no-oats 'oatmeal' cookies'. Eek. Not sure if I'll ever try those, but good to know they're out there if I'm ever really craving them. It did occur to me that I'll probably start going gluten-free just before Thanksgiving. That should be interesting. We're going to Avi's cousin's house in San Diego for that. Maybe I'll have to bring some of my own food that gluten-free. I need to stop thinking so far ahead! It's no good for anyone. 

Days 14, 15

Sat & Sun 9/25-26


Since I've been feeling better, I'm starting to notice I'm thinking less about my immediate symptoms and becoming more emotional. Friday night and Saturday morning were rough for me, but for no good reason. I think I've been avoiding the coping process until I have real answers, but when I do get caught up thinking about my future with Celiac, it can be depressing. I actually burst into tears after a trip to the grocery store for lunch on Saturday. Avi was freaked out. I told him not to worry and that it was just a release of pent up frustration, but he was still concerned. I think it's natural. Sad, but natural. I mean, how can the grocery store not be frustrating and even depressing for someone in my position? 


I should go to Whole Foods and check out their selection. I looked online and they have a 20 page list of gluten-free products just for the location nearest me. 


I try to keep myself busy this weekend, which is relatively easy because I'm feeling good physically. I'm starting to realize that I hadn't been reaching out to friends in a long time. I think they don't realize how scary and difficult it's been over the last year or so. But that's certainly not their fault. I decide I need to make an actual effort show my weaknesses to people I care about. That's what they're there for after all. Why have I built up such a wall? Maybe because I was trying to ignore it all, hoping it would go away with brain power.


Avi cooked lasagna to keep making sure I'm getting my gluten. It's very tasty! I ask Avi if it's a new recipe, and he says no. Maybe it's just because I haven't had pasta in a couple weeks. I also had a beer and some other gluteny-filled goodies at a tailgating party on Saturday. I didn't even feel sick! So it's just a balancing act, for now. 

Day 13

Friday 9/24


Finally, my GI specialist appointment. Since my doc was off with knee surgery, I got to see a very nice and knowledgeable Physician's Assistant, and I'm confused as to what her training is. Whatever allows me to schedule the endoscopy though.


The first thing she says is, "So, you've got a positive Celiac blood test?" When I answer in the affirmative, she asks if it runs in my family. Yes, I say, my maternal aunt was diagnosed a few years ago. She says, "Ah. And are you of Irish or Scottish decent?" This surprises me because I do in fact have that heritage, but on my dad's side. I say that the side with the Celiac is Eastern European Jewish. Her eyes widen as she says, "Ohhhhhh". Crap. I guess I have the two worst genetic backgrounds in terms of risk for Celiac. So much for my usual joke of having healthier "hybrid genes". 


Anyway, the assistant asks me about all my symptoms and says we should definitely proceed with an endoscopy. By the way, she was really excited to hear I'm still eating gluten. So I guess it's worth it to get a good look in the endoscopy. She wants me to get anesthesia for the test because I woke up in the middle of my wisdom teeth extraction, which suggests an ability to metabolize sedatives too quickly. I've never had anesthesia, so that freaks me out a bit. Plus, I'll bet my insurance is going to charge me an arm and a leg. But what can I do, really?


As the assistant is about to end our visit, she mentions that it sounds like Celiac to her, but there's always a chance it could be Crohn's or IBS. I ask her how likely it is to not be Celiac, and she says, "Well, I've never seen such high levels in your blood test as yours before. But there's always a chance." I ask her what that means, and she won't give me a straight answer. I try not to read into it, but immediately go home and google "Celiac blood test" to see if I can figure out what high levels mean. Looks like lots of antibodies that react to gluten. Gotta be a sure sign of Celiac, right? Is it weird I want the diagnosis now? It's a straightforward answer, which would be nice.


Endoscopy on Oct 7. I'm almost one step closer to knowing for sure.

Days 10, 11, 12

Tue, Wed and Thur 9/21-23


I continued to experiment with keeping my gluten levels to a moderate level, and knock on wood am feeling a lot better! I realized that I was always aware of where food was in my digestive system because everything was probably irritated. Suddenly it feels like a luxury not to be aware of whether my stomach is still digesting. Anyway, to avoid the gory details, I'll leave it at that. It's given me just enough of preview of what life can be like ahead of me. And that's really renewed my motivation. 


My primary source of gluten this week has been soy sauce. I've been eating lots of variations of stir fry, pad thai, and other noodle or rice-based foods. I'm also continuing to enjoy my favorite wheat-filled candies like Twizzlers and Milky Ways. Not bad, considering I was eating with fear just a few days ago!


I've been busy with school and work, and it's been strangely nice to be able to spend long days doing work without an interruption of severe digestive distress. I think I might be a much more productive person with just a little less gluten! So it's pretty clear to me I must have a sensitivity to gluten, even if somehow it's not celiac. It's pretty amazing to suddenly know what's causing a chronic issue. Now I just need to move on with my diagnosis and my life.