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!