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.