Just over 2 Months GF- Airplane Noodles & Aloe Juice

Let me start by saying I did my math and thought I was GF for 3 months when I first wrote this post. Then I realized... no, it just feels like 3 months. My 3 month GF anniversary is Jan 10. So this is a retrospective of the last couple weeks, which begins right as I reached my 2 month mark.

A couple weeks ago, I finally got in with a nutritionist who knew about all the issues that can come with Celiac Disease. Thank goodness! I realized I had lost 9 lb since going gluten free, which was very unintentional. She said she could tell through some analysis that I have been losing muscle, which indicates malnutrition. It was surprisingly emotional to hear her acknowledge that I'm having trouble getting enough nutrients on a daily basis. She told me to try to get 80-90g protein a day (40g more than the recommended daily allowance)! Also, she agreed I should not only cut out dairy but also soy, at least until I start feeling better for a couple months. So where do I get the protein? Oh yeah, I also think I'm allergic to eggs... love it. Oh, and coffee and black tea have been too acidic for me lately, so I'm off caffeine. When it rains it pours.

I'm just eating lots of meat and nuts for the time being. I noticed a difference immediately, which is worth the dietary sacrifice though. My mantra for all these additional restrictions has been "It's only temporary". Man, it's gonna seem like a breeze if I can ever start having these foods and ONLY cut out gluten. Ironic.

Last week, we took our first plane trip to go to Florida for a quick vacation. We knew we were going to a condo with a kitchen, and that there were plenty of good grocery stores nearby, but the plane trip was another story. We didn't check a bag, so I couldn't bring any significant amount of food in liquid form. Going there, we made chicken salad and rice cakes with peanut butter and some fruit. Pretty good. We had almost nothing to do in Florida except cook lots of good food for me, so it was almost like rehab. I felt so much better by the time I came back. The one thing we forgot is what to pack for our plane ride home. I packed a bunch of gluten free crackers and sliced apples and a Thai Kitchen dry noodle soup. Just add hot water. So on our layover, I asked for a cup of hot water at Starbucks, and decided to wait until we were on the plane to assemble the dehydrated noodles, sauce etc all in the plastic bowl it came in.

I finally put it together just before take-off, and fortunately it didn't leak or slide anywhere. It sat and "cooked" in the hot water in Avi's footspace, which would have worked, except the water had cooled just enough to NOT cook the noodles fully. The best part? I forgot to take the packet of oil out of the container before filling it with water (it was hiding under the noodles). Oops! It was a bit raw, but I ate it anyway out of hunger. Note to self: add hot water to noodles IMMEDIATELY!

I went to a more local support group for Celiac the other night, and got lots of great advice about places to eat nearby. I ended up winning a big basket from a gluten free store, which is owned by one of the members who attends. He had hand-picked lots of yummy soup mixes, pasta, and baking mix. It was really nice to meet people who are still working on making their gluten-free life stable.

Today, I finally followed through on a suggestion from my nutritionist to get protein powder and make shakes with almond milk, frozen fruit and the powder. The lady at Hi Health talked me into also buying Aloe Vera juice, which she says is like putting aloe on a sunburn, except on the inside. She said she thought it would be a good first step to help everything heal. It's worth a try!

Weeks 7 & 8

I made it through Thanksgiving, although not as well as I had hoped. The hostess was amazing and did everything in her power to cook lots of foods I could eat. She cooks mostly from scratch, so the issue was more cross-contamination than actual ingredients. But since there was flour floating around from other dishes, I think a bit probably got into my food anyway. I wasn't ill that day at dinner, which was my biggest fear, so that was a big plus. But I was still sorta sick that night, and I realized over the next few days that I must have been exposed just enough to cause damage inside. Every time I ate, I'd feel discomfort and stomach pain. Oh, the gluten monster. It's been over a week and I'm still not healed from it. It's a good exercise in positive reframing and acceptance.

If you've ever played Apples to Apples, you'll appreciate that I played with our family the day after Thanksgiving and I picked the green adjective card "Overwhelming". When everyone handed in a card they thought met that definition, lo and behold, someone had handed in "Wheat". Clearly, they had me pegged. It was very funny, in that dark sorta sad kind of way. Hopefully that same card won't be true by next Thanksgiving.

Otherwise, I'm just trying to make it through my commitments till things lighten up with school over winter break. With the discomfort I've been experiencing since Thanksgiving, I've been eating way too little. I've tried supplementing with nutrition shakes like Ensure, but I don't think that's nearly enough. So I'm in the process of scheduling a nutritionist and plan to change primary care doctors-- No one at health services knows anything about Celiac... I actually came in for my follow-up visit and the triage nurse wrote that I was there for "lab results". Not exactly, honey. The doctor forgot I was there because she had asked me to do so after I got the final diagnosis from my GI, and she let the student doctor see me, who tried to explain to me that there's no pill he can prescribe to "cure" it. Uh, thanks for the novel information, man. I had no idea.

I'm thinking of trying some digestive enzymes or probiotics to help speed up the healing and help aid digestion. I've read about a ton of possible ones to try, but I'll have to sift through them to find one to try first. I'm actually wondering if the new legalization of medical marijuana might be an option for me if this keeps up for very long...

GF Week 6

Nov 9-16

Time to start gearing up for Thanksgiving! That will be quite a trip, I'm sure. I'm heading to San Diego to visit some family, and we're staying in a hotel for several days. I've been advised to bring some of my own food and also research gluten-free friendly restaurants in the area by contacting local support groups and other organizations. I need to start planning for that. My husband's cousin, who's hosting Thanksgiving, is very eager to help cook things I can have, but I worry about cross-contamination. It's weird to want to trust people, but not make them responsible for me getting sick either. I'd hate for someone to feel guilty about my health. So I sent her some resources and I'm hoping we'll talk more in the coming week to figure out what she's going to try to make gluten-free and what might not be possible.

In other news, my health is officially random. I'm told it's just part of healing, and that you'll often have weird symptoms without knowing why. I'll literally have an hour or two of feeling super ill, and then feel on top of the world the rest of the day. It's definitely practice in mental self-control to not spend all my time preoccupied about what I might have done to cause any of it. I've reached a point where I sort of just have to go along day by day and try not to worry about why I'm feeling however I'm feeling. I'm not the best at it yet, but I'm sure I'll learn.

This week I'm going to prioritize setting up an appointment with a nutritionist. I could use all the help I can get to find things to eat. I had a bone density scan yesterday, so they'll know whether I'm calcium deficient. Vitamins, here I come!

GF Week 5

Nov 1-8

This was a roller coaster week. In retrospect, I'm definitely feeling very good on average. Even on my bad days, they're definitely worth the good days. And I can only believe the good days will become more and more plentiful as I progress. The three most dramatic changes I've noticed, aside from the obvious digestive stuff, are feeling hydrated, well-rested, and more mentally alert. I was guzzling water all the time before my diagnosis, which I think had to do digestive issues... totally unexpected though. I'm also sleeping about 7-8 hours a night, rather than 9-10 hours, which was my norm whenever I could have that much. My need for coffee has gone way down. All good things! I need to keep these in mind when I have my bad days.

At the beginning of the week, I felt sick for several days without really knowing the source. I've started to get sick of the guessing game, which I'll call "Find That Gluten!". It has all the workings of making a person go crazy and very paranoid (which seems to be common on some of the celiac message forums). So I'm trying to keep my sanity intact. Regardless of why, my week started with mini vertigo attacks in which I'd turn my head quickly and the room would spin momentarily. Also felt some pretty significant fatigue. Ended up cancelling several commitments and going home to sleep on Tuesday. Very frustrating and depressing.

I went to my first Celiac support group meeting on Wednesday. Avi drove me because I was feeling too dizzy to drive-- bizarre, huh? I never really had that kind of feeling in the past, but maybe I was but it was hidden behind other symptoms. Anyway, it was good to have gone, although I still felt under the weather. I did meet some very nice people who were definitely sympathetic to my very recent diagnosis. They also sent us home with some good resources on recipes for the holidays.

Tried Udi's bread, which has come very highly recommended by nearly any gluten-free person I've talked to. It's not bad! Definitely not exactly the consistency of bread I'd typically eat, but it still seemed like bread to me, which is nice!

By Friday, I finally recovered and started to feel normal again. I ate every meal ravenously and snacked all day. It was literally a high to feel normal again, and it made the misery from the rest of the week fade away a little bit.

Last night, we did a bunch of cooking, which helped my anxiety over what to eat for the week. It was a cooking bonanza! Pulled BBQ chicken, steak, rice, stir-fried veggies, and potatoes. We also talked to our relatives which we're visiting for Thanksgiving and gave them a heads up on my situation. They were very receptive and wanted as much info about cooking safely for me as possible. Now I just have to decide how much to trust other people's food... it's not that I don't trust the people, but their gluten-contaminated kitchen is the big problem.

I bought some all-purpose baking flour that has a strange assortment of gluten substitutes (rice flour, potato flour, xantham gum, etc). I'm thinking of trying to make cranberry muffins or something... Might be a disaster, but you gotta start somewhere, right?

GF Week 4-- Baking: Attempt #1

Oct 25-Nov 1

I decided to make some cookies to bring to a Halloween party on Saturday so I'd have more goodies to enjoy. I found a very highly-rated recipe and carefully checked people's reviews & suggestions. I thought I did it perfectly, but for whatever reason the texture of the batter was strangely gooey. After 5 minutes in the oven, I peeked inside only to discover that the cookies had expanded into one giant cookie bar in the baking pan!

Nonetheless, I let them finish baking and figured I would cut them like brownies. Took my first bite and they melted into sugar and stuck to my teeth like taffy. Still tasted good, but definitely not quite right. Oh well. You have to start somewhere, right?

Talked to my aunt with Celiac yesterday. She told me she thinks it's fanatical to replace all my plastic storage containers and segregate them from gluten. She lives in a shared gluten household and said she has managed to get her antibodies from 800 to 3 and still uses shared cutting boards, utensils and storage containers (after they are run through the dishwasher). Even more exciting, she says she is super sensitive to gluten, but still doesn't have any issue with food that says it's made in "shared facilities" with wheat. I'm still trying to be strict for now, but it gives me hope that I'll be able to expand my foods after a while to include stuff like that.

It's still difficult stocking my kitchen with enough food to feel like I can have a substantial meal. Last night, I had a little meltdown because I was stressing about what to cook for the coming week. I spent an hour wandering the supermarket for stuff to buy and ended up making a huge salad with a big variety of ingredients, but then ate a bunch of it for dinner. So much for leftovers. Plus all that roughage is giving me stomachaches. Maybe more potatoes are in my future, at least till my gut heals more. The trouble is, I don't want to be too repetitive with my diet or I could develop food allergies. Oh gluten...such a journey. An adventure, right?

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.

Day 9

Monday 9/20

Continued going light on gluten, and feel pretty good today. Digestive system seems to be pretty happy about this dietary change.

I had a gluten-free lunch, except for the delicious Reese's Pieces Brownie I bought for a bake sale to raise money for the 3-Day Breast Cancer walk for my classmates. Definitely gluten well spent! And happy to donate to the cause.

Eating the brownie got me wondering about candy, since I'm a complete sugar addict. Discovered that some of my favorites are actually very much gluten-present. Crap. Milky Ways (milk chocolate), Twizzlers and Red Vines all have lots of gluten. Strangely, Milky Way darks and Snickers are okay. Plus there are lots of more natural gourmet red licorice candies that are okay. So I'm safe with that.

But I still went out and bought some mini Milky Ways and a pack of Twizzlers as part of my Tour de Gluten. That's some gluten well spent as well. Just had to control myself so I didn't eat too much in one day. So far, so good. Sweet tooth satisfied!

Day 8

Sunday 9/19

Starting today, I just can't keep subjecting myself to something that is probably making me so sick. As an experiment, I cut out the obvious gluten-containing products from my diet, but plan to still deliberately keep having gluten each day, just in a smaller amount. Instantaneously I began to feel somewhat normal again. 

I resisted a soft pretzel at the mall today. That made me a little sad. But after the previous night, I was okay with it. Maybe I'll get the hang of living gluten-free if I can remember what it might do to me if I resumed a gluten-filled diet. Too bad gluten is so tasty. 

Avi didn't try to make me eat anything with gluten today. I think he started to realize how miserable I was becoming. Today was my day off from it completely. At least as far as I could tell.

Day 7

Saturday 9/18

Saturday was a low point for me. I had my recently usual Lucky Charms for breakfast, but sort of thought I'd eat lightly in honor of it being Yom Kippur. I had a lot of moments of feeling bitter about how difficult it's been to keep functioning as usual with my random bouts or "episodes", as I've been calling them, of pretty serious indigestion and other symptoms I won't mention here. While Jews fast one day a year to remind themselves of their sins and also of the things they should be thankful about, I can only think "why me?" when I realize I've been limiting my diet in a desperate attempt to control the symptoms that were spiraling out of control. Don't get me wrong, I'm not actually feeling ill on a regular basis. Just generally crappy on-and-off, in an unpredictable, yet regular pattern. But then I had a string of at least four days last week in which I would become sick for an hour or so and then get very tired afterwards, which would last for the rest of the day. 

And after eating a bagel and a lot of baked goods for breaking the fast with Avi and friends, I became really sick and miserable. I thought I might become violently ill, but I somehow got over that and ended up just going to bed early. On a Saturday night. What a sad weekend. How could I continue force-feeding myself gluten?

It's pretty amazing to realize the power of the mind. I had spent the last year telling myself that my symptoms were just the result of an irritable stomach and its close connection to my stress level. I was able to convince myself that it was my fault, but also that I could control the symptoms if I just managed my stress well enough. It did help to use relaxation and yoga and other methods, but when all was said and done, that didn't explain it fully. Nonetheless, I was able to convince myself that if I didn't spend time worrying about it and thinking about it, it would resolve itself over time.

It wasn't until I received the blood test results a few weeks ago that I was suddenly aware of the physical damage that's probably going on inside of me. Somehow, it made my feelings legitimized and real. It was simultaneously relieving and also debilitating; if I can't control the symptoms with stress management, and if I have to keep eating gluten, I'm actually feeling sick for real reasons... and there's nothing I can do about it.

Rather than feeling depressed about it, I'm trying to become empowered. I realized that although I need to follow the doctor's orders, there was no reason to keep making myself miserable. I can decide how much gluten I choose to have, and it's time to start making changes, even if they're subtle for now.

Gluten-Free Resources

Thanks to those of you who have recommended certain websites that cater to being gluten-free. It makes me sad I can't really get started yet, but I'm going to keep updating this list as people send me resources. I can't wait to dive into all of them! (Is that strange?)

Celiac Princess
Good Without Gluten Blog (great posting about safe halloween candy: Yum)
liveglutenfreely.com
Amy's food resources
King Arthur Flour Recipes
Celiac.com
Whole Foods

Day 6

Friday, 9/17

I went lighter on gluten today. Had chicken teriyaki, which has gluten in the soy sauce, but otherwise tried to cut down.

I’ve been feeling sick every other day, if not more often. This is getting tiring. The GI office called and said the doc I scheduled to see next Thur for a consultation needs knee surgery that day.  Awesome.  I was tempted to tell them to make him crawl in to see me, for all I cared. I resisted the temptation and accepted an appointment with his assistant next Friday. The secretary who called was sympathetic when I told her about my situation, that I am eating gluten and feeling sick, but still refused to schedule an endoscopy before I actually show up at the office. Seriously though, this must be unethical to encourage your patients to hurt themselves with a substance you know is damaging them. I’ve come very close to calling my primary doc and asking her how important it is for me to eat gluten, but then I talk myself out of it. My sister pointed out that it’s sort of backwards for me… most people would cheat with gluten, but I want to cheat by cutting back on gluten. At least I’ll feel ready when I actually am supposed to cut it out.

At sundown, it's Yom Kippur and Avi will start fasting. On a holiday like this, I realized my life has started to resemble fasting as well. Since I keep getting indigestion during the day, I've been cutting back on eating lunch and having the bare minimum till I get home and have dinner. I think things have been worse than I realized... which is good because there's a lot of room for improvement.

Day 5

Thur 9/16

I realized that lots of breakfast cereal will be off limits for me. I went and bought Lucky Charms and Honey Nut Cheerios. Forgot how awesome Lucky Charms are. Avi also realized how much he likes them.

Day 4

Wed, 9/15

In class today, my classmate told us she just found out about a bunch of food allergies she has. In addition to wheat, she’s allergic to malt and pepper, which are both in almost everything. It gives me a little perspective on my situation.

Our professor brought out snacks after hearing us talk about food. Ironic that it all contained wheat. But good for me, since I’m still eating it. He had all my favorites: nutter butter bites, mini oreos, wheat thins and goldfish. I tried to control myself so I wouldn’t end up sick in class. Then a meeting with super yummy brownies after that. That made me happy I was still having gluten.

More leftover pasta for dinner. Pretty tasty. I think I did a good job consuming gluten today.

Day 3

9/14
Avi wanted to cook, so he offered to "take requests" from me as long as it was a gluten-filled meal. I originally mentioned baked ziti, but it was approx. 1000000 degrees outside, so it seemed too heavy that day. I suggested pasta primavera, and he acted like it was too difficult. I found him a recipe and told him I just wanted some sauteed veggies with oil and garlic over pasta. That's the sort of recipe I'd do without any specific recipe. But he said it didn't sound good to him. So much for taking any request...

Anyway, I finally succumbed to whatever pasta recipe he wanted to make. He ended up making spaghetti with basil sauce. No veggies. Oh well. This is our eternal issue. He likes just sauce and meat (at least he didn't fill the sauce with too much ground beef this time), and I like veggies. It tasted very strongly, almost too strongly, of basil. Avi could barely notice the flavor. It's a miracle we have any foods we like in common. I added a bunch of Parmesan and shredded mozarella to cut the basil, which made it pretty satisfying.

Day 2

9/13
Trader Joe’s cranberry pumpkin bread. It tastes good, but when I swallowed it, I noticed some tightness in my throat. Have I just never noticed it, or am I being hyper-sensitive?

Bought biscuits at the grocery store today. That makes me sad. Till I realize that I rarely eat them, even though I really love them. I’ll just have to find a gluten-free biscuit recipe.

Day 1

9/12

Challah French toast at Chompie’s. Had it with strawberries. The food was great, but the company was better. Had a chance to catch up with Jessie, which was somewhere around 6 months overdue. We stayed for 3 hours. Well worth the dose of gluten and the $13.

I also had Domino’s pizza while Avi watched sports. I think it’s true they have improved the crust. Glad I got to taste it. Although I don’t know I’ll miss it too many times a year…

Gluten Goodies

Here is my list of foods to enjoy before I eliminate them forever. Every few days, I'm trying to go enjoy something new. I'm looking for ideas! If you think there's something else I should add, please post a comment.

Garlic bread

Soft pretzel 

Strawberry Rhubarb Pie

Stuffing (Thanksgiving style)

Matzo ball soup

A really good bagel

Italian Sub

Pizza Bianco (supposed to be some of the best pizza in the country, right here in the Phoenix area)

Baked ziti

Little Debbie chocolate roll cakes (not sure what they're called)

Biscuits

Oreos

Nutter Butters

Root beer float (the caramel coloring is supposed to be gluten-iffy)

The Blood Test

Here's the full story. It's a bit long, but hopefully it will help answer some questions.

For the last year or so, I've noticed increasing issues with digestion in my daily life. But I always figured it was the result of stress and anxiety over grad school combined with my upcoming wedding, and just spent time managing my emotional states rather than considering a physiological problem.

After my wedding was over and the less-stressful summertime had arrived, I started to realize that nothing had changed with my random bouts of GI distress. My aunt was diagnosed with Celiac about five years ago, and I'd been putting off the blood test for fear of it being positive. I never noticed a connection to wheat, but having had food allergies as a child, I dreaded the thought of restricting my diet ever again. Anyway, I finally listened to my mom and went to the doctor.

My guess was Irritable Bowel Syndrome. It seemed like the reasonable answer for why it would get worse with stress and anxiety. I wasn't excited to get the diagnosis, but I thought at least I would have an answer and might be given some suggestions on how to manage it. My doctor agreed it sounded like IBS, but said she needed to rule out other problems like parasites and viruses, as well as Celiac, in order to diagnose me.

Last Tuesday, I came back for my results. I knew right away there was bad news because my doctor's neck was red and splotchy. I braced myself. At that moment, I was ready to hear it was Celiac. And that's what she told me. The blood test looks for four indicators of Celiac, and any one coming up positive is a pretty definitive test. Three indicators were positive for me. And that was it. I called my husband, Avi after I got the results. He made me take the rest of the day off and came home early from work to spend the day with me. When he got home, he immediately ransacked our whole kitchen hunting down the foods we'll have to get rid of. I kept reassuring him that he doesn't need to go gluten-free, but he said he wants to learn recipes for both of us that will work.

So the next step is a gastroenterologist for a consultation followed by an endoscopy. This entails being sedated and having a snake-like camera and set of tools lowered down your esophagus, past your stomach, and into the small intestine, which is where damage occurs in Celiac. They take a biopsy of the tissue there, and look to see if there is visually noticeable damage. They're looking for the villi, which allow us to absorb nutrients in our digestion, to be damaged and possibly missing.

The most insanity-provoking issue is that they encourage you to keep eating your diet exactly as you have been eating it, gluten-filled and all. This is because as soon as you remove gluten from your diet, your body usually starts to heal. Without seeing the damage, the doctor might give me a false negative diagnosis from the endoscopy. I'm actually supposed to keep doing myself damage and provoking the digestive distress. It's pretty difficult to keep eating pizza, pasta, and breakfast cereal knowing it is likely making my insides tear themselves apart. And that's been the toughest part of the blood results so far. Then when I'm feeling sick, which has been pretty much every other day or so, I get really bitter. Both bitter about the diagnosis, and also bitter I can't do anything about it yet.

The advice I keep getting from people with Celiac is to enjoy the gluten-filled foods now, because I'll probably never have them again after I remove gluten from my diet. Apparently once you start taking gluten out, you become increasingly sensitive and aware of the pain it inflicts on your body. So my husband Avi suggested we start on a little adventure in order to say goodbye to my favorite gluten foods, and to help me tolerate the fact I'm eating things that are probably making me sick: Tour de Gluten. I'm making a list of the foods I want to have in their original, gluteny forms before I take it out of my diet. In the meantime, I'm trying not to do much research on what I have to do to take gluten out of my diet until it's time.

I thought this might be fun and useful to document in a blog. My plan is to share my journey, from start of Tour de Gluten all the way through my learning experience as I remove it from my diet. I hope you'll join me and send me your thoughts along the way. Thanks for keeping me company.

Shayna

Hi Everybody

I recently had a positive blood test for Celiac Disease, and decided to write about it in this blog. I think this will be the best way to communicate my experience with my friends and family and will be therapeutic for me. I look forward to learning and growing from this experience, but it will no doubt be challenging. Your love and support has been much appreciated.