I’ll be updating this page as my challenge progresses. Get ready for TMI!!!
Our whole family went gluten-free just over a year ago. At the time, it seemed like a good idea just to give it a try and see how it went. What we didn’t know was that we’d eventually want to be tested for celiac disease, and those tests are only reliable when you have been eating a diet high in gluten for about 3 months.
We found out about the testing early on and decided to get our daughter tested. Her brother obviously had to be 100% gluten free, but she hadn’t shown any real changes. She was extremely small for her age, though, and that can be symptom of celiac disease. Kid1 ate whole wheat bread every day for a couple months and eventually got blood work which was negative. She also had genetic testing done, which did not show any of the typical risk factors for celiac.
Since our kids have different biological fathers, It honestly didn’t occur to me that I might need to be tested, too. I figured my son had his celiac genetics from his biological father and I was safe. Going gluten-free had been hard for me at first, and most of my positive changes took place after switching to the GAPS diet. It seemed to me that getting my blood sugar regulated and eating all the probiotic foods had more to do with my improvements than cutting out gluten, but I definitely experienced a withdrawal from gluten.
When I reviewed the kids’ genetic information, though, it was obvious that my son got one copy of his risk from his biological father, and one from me! I’ve decided I really want to know if celiac disease is a part of what’s going on for me. I also wanted to know how critical it is that I stay 100% gluten free and vigilant about cross-contamination forever. I’m curious to know if any of my symptoms seem directly correlated with exposure to gluten. When we were first gluten free I did seem to get symptoms from cross-contamination in alternate grains and beans and I’m curious if those were gluten reactions or reactions to those foods themselves.
So… I waited until I had my digestion back on track. It had been out of whack because of soy-fed eggs and a quick slip into some Halloween-related processed crap. Digestive enzymes and getting back to basics got me in good shape. I went to my doctor and she ordered a full celiac panel for me. This way, if I can’t make it the whole three months, I can go in for the test without waiting for a new appointment. When I am ready, I’ll just go into the lab.
The celiac panel includes:
- tTG IgA
- EMA IgA
- AGA IgA
- AGA IgG
- total IgA (important because if total IgA is low, the other IgA tests will not be accurate)
- DGP (this one is now replacing AGA, it is more specific to celiac disease)
My goal is to eat about 20 grams of gluten a day for at least 2 months. This is the amount in 4 typical slices of bread. But since I wanted my symptoms to be obviously related to gluten and not other ingredients I’m not used to having, we decided to go with Bob’s Red Mill Whole Wheat Farina as my source of gluten.
After Thanksgiving, I started the gluten challenge. I’m eating the farina every day. The first day I actually didn’t notice any symptoms, but slowly they are starting to add up. It started out with foul gas, and now I’m noticing brain fog and a bit of a headache when I eat it as well. I’ve had to run to the bathroom a couple times, too. I’ve been sleeping extremely heavily and this morning woke up with my old stiff hands. I can’t be sure this is all the gluten talking, but it does seem related. None of this is as severe as what I used to experience… but it has been a year of healing since then. It will be interesting to see what happens. So far it hasn’t been bad and I’m thinking I’ll be able to make it through the challenge for some reliable testing.
Update December 2, 2011
Since the farina is 12% gluten, I have to eat 167 grams of it a day to get my 20 grams. I have not been able to keep up with this amount. It makes me so full that I don’t feel like I can eat anything else. Having half first thing in the morning and half in the evening has helped with being able to eat other foods. I’m going to try finding something less filling to try. I’m going to try store bought bread with the fewest ingredients I can find.
Symptom-wise, my gas is much better than it was at first. However, I’ve been sleeping like a rock and waking up tired, with very stiff hands. My thumbs and toes are sore in the morning and night especially as well. It’s hard to say with symptoms like this what they are related to. I did have these symptoms before going gluten-free, however maybe it could be the weather, or the yard work I’ve been doing? I guess time will tell. My bad breath and terrible BO seem clearly correlated to the gluten. So do my tummy aches.
Update December 7, 2011
Well, things seem to be getting worse. Last night I ate a bunch of sourdough bread before bed and I woke up four or five times with horrid pain in my arms and hands. It’s similar to the symptoms I get from hypoglycemia, only much worse and with stiffness. I got the pins and needles feeling all the way down them, the dead arm feeling, and pain. Also, my hands couldn’t make a fist, and moving my fingers was very painful. They did a sort of popping thing when I extended them and bent them, jumping from position to position instead of flowing through them. They also couldn’t fully extend. A couple hours after waking up they felt better. I still have some weakness in my hands but it’s not too bad. Before changing our diet last year these kinds of symptoms were normal for me. The rest of my symptoms are continuing.
Oh, my achin’ belly! This has been happening on and off throughout the challenge, but this time I thought to take a picture. Normally my belly is flat.
It’s definitely getting harder to make myself eat the gluten. I think I’m going to get some Bob’s Red Mill Vital Wheat Gluten and start sprinkling that on all my meals.
Update December 16, 2011
Oh boy more fun body stuff. Today I had a symptom I’d pretty much forgotten about but which used to be a constant thing – morning nausea and an extremely sensitive gag reflex. When I brushed my teeth this morning it sent me into dry heaves. Yuck!
I’ve also noticed my skin is itchy. My face is breaking out and my forehead, legs, and torso itch. They even turn red and inflamed when I take a hot shower. Nice.
Update December 19, 2011
It is so hard to eat the gluten. The past couple days I’ve been really bad about it. I even had one day were I didn’t eat gluten, and I went for something like a glorious 12 hours without a stomach ache. The next day on gluten was brutal.
I’ve started to get brain fog when I eat the gluten. It sets in pretty much right away and doesn’t last all that long. The other new thing that’s happening is I’ve been crashing. I think this is a blood sugar problem. I have belly pain which makes me not want to eat until I am falling over. It’s happened to me twice in the past couple days that I got a cold sweat, lightheaded, and had to lie down and eat something. This is something that used to happen to me regularly. I used to pass out, but I’ve since learned to hit the floor on purpose first. It started when I was about 11 years old and was especially bad when I was pregnant.
Still, through all this, my symptoms are just a fraction of what many other people experience. I’m functional, overall. I really wonder whether the tests will show anything when we get to it.
Update December 23, 2011
Today I took the cat to the vet and about half-way through the visit I almost passed out. I’d been thinking this was just a blood sugar issue but I ate right before going to the vet so I don’t know now. Fortunately I realized it and was able to lay down before I hit the floor. When I had my color back the doctor asked if I had low blood pressure. I do, generally, but explained that my fainting spells have come back with my gluten challenge. She said it seemed I had my answer.
Update December 27, 2011
Ugh. I went a couple days without eating gluten. It wasn’t really on purpose because I still want to get tested… We just had so much else to eat and by the time I thought of making pasta I was so full. I stopped stinking as much and my now-constant tummy ache let up, and that made it even less appealing. Anyway, I’m back on gluten as of last night, back to the same old stuff. Now the whole family seems to be coming down with something (headache and nausea) so until that’s gone it’ll be hard to say what’s gluten and what’s the virus.
Also, I’m finally clear of the herpes outbreaks that I just realized I forgot to mention. I’ve had three since this challenge started a month ago. I’m pretty sure I only had one mild outbreak in the whole year prior.
Update December 29, 2011
I’ve always been the emotional sort, but lately I’ve been back in my adolescent brain. Everything is reading as an attack. Of course I’ve felt completely justified in my defensiveness and outbursts in the moment, but it’s starting to get ridiculous. My tip off is that people are reacting to me differently than I’m used to. So I started going back later with the thought in my head that maybe I was overreacting, and when I review what happened I can rationally see how I misinterpreted things completely. Sigh. Being a teenager was bad enough the first time.
Update December 30, 2011
Yesterday I started getting what is probably a reaction to something else – I had itchy, itchy ears. Throughout the challenge I’ve had itchiness on my legs, arms, and torso, but this was intense and all around my ears. I wonder if I’m developing some sort of allergy to apples as I’ve been eating a lot of them lately, what with the apple butter, apple crisp, applesauce, and plain old apples we have on hand. I’ll have to test that.
My facial tingling has also come back. This is a weird symptom I’ve had on and off most of my life. I’ve gotten it with migraine auras before. But when it was at it’s worst it turned out I had an abscessed tooth and had to have a root canal. My dental health had been so much better on GAPS it was amazing. I’m really hoping this is a tingly-face thing, not a tingly-your-bones-are-rotting-out-of-your-face thing. How’s that for hypochondria? It is more uniform so it’s probably a tingly-face thing. TinyHands has also noticed I’m shaky. I used to be shaky, but that had pretty much gone away. All this points to neurological symptoms returning, I think.
Oh, and good news – I think the diarrhea and horrid gas have subsided. Now I’ve just got pain instead. The pain is in the same exact spots I used to get it – kind of appendix or gall-bladderish. I really hope I don’t start getting attacks of that again (I’ve been to the ER a few times over this). So far it’s just twinges. Fun times, folks.
Update January 2, 2012
I stopped eating apples but my itchy ears and tingly face are sticking around. My legs are falling asleep a lot, too.
Another symptom I’ve been having is bad sleep. I don’t fall asleep easily, and I wake up all night long. My bad breath actually is so bad that it wakes me up. My belly pain wakes me up, too. (So does the cat… and needing to pee…) Of course when I get woken up I’m in the middle of a dream, and my dreams have been extra scary, too. Then I wake up late and have a really hard time getting started.
Well, last night I slept like the dead. I only woke up once, and fell right back asleep. It was marvelous. I kind of woke up when TinyHands got up, but I was super disoriented, thinking it was Saturday, wondering where I was supposed to be, and feeling like total crap… then I fell back asleep so hard that when TinyHands came in and opened the windows and put the cat on me I didn’t stir. She checked on me 4 times and I didn’t wake up. Maybe I’m making up for lost sleep.
I also finally took a little video of my hands when waking up. It shows the weird jerky thing they do and how I can’t make a proper fist. This is typical for me the first hour or so after waking since I’ve been back on gluten. The sound is bad, basically I’m saying I can’t move my fingers smoothly or make a tight fist. They stretched out fine this morning, sometimes they won’t do that. There is some achy pain in the joints and bones of my fingers. My toes, knees, and shin bones have been sore as well.
Update January 10, 2012
I keep eating the gluten. My body odor is really unpleasant, and has been since the start. Of all the symptoms, this is the one that upsets me the most. It’s just embarrassing to stink! My digestion has slowed down but isn’t miserable any more. I think I’m kind of adjusting to having the gluten in my diet. It makes me wonder if I’m going to get negative test results despite all this unpleasantness.
It’s funny how even after more than a month of this I am still in my gluten-free mode out in public. I reflexively politely refuse foods that people offer me and plan ahead for bringing my own food. It’s funny how normal being gluten-free has become to me.
Update January 16, 2012
I’d been feeling like I stabilized at a new normal. Then I really gorged on gluten. I went to a party, played Toblero, drinking a lot of beer in the process. I also ate about a loaf of amazing fresh-baked bread. This was on top of already having had gluten that morning. I had a fantastic time!
Wow, did my symptoms blow up the next couple days. I’m back to running to the bathroom, and I stink ten times as much in every imaginable way. My hands have achieved new levels of stiffness, and I have had a more-horrid-than-ever time prying myself from bed in the (late) morning.
Update January 19, 2012
I still haven’t recovered. I almost pooped my pants twice this morning. TMI, I know. But seriously, if you’ve read this far that’s no biggie, right? My face feels puffy, too. Like my eyelids are extra thick and itchy. Seems like I must have some mild sort of IgE thing going on.
The worst thing is how hard this has been on my family. TinyHands seriously is suffering for having to put up with my over-the-top defensiveness and sensitivity. It’s like I have PMS x 100 all the time. Add to this my thoughts are obsessive.
I get convinced that people are “trying to make me lie.” For instance, yesterday I was trying to figure out how to file W2s for employees. I called the Social Security Administration office’s number. The automated phone tree told me to enter the SSN for the person I was calling about. I was calling about filing 2 employees’ forms. So I freaked out and had to hang up. I couldn’t decide what to do so that I wouldn’t be “lying.” I called back and entered my own SSN, irrationally fearing that it was somehow a federal offense I could be prosecuted for. I worried about it for the rest of the day.
Fortunately, I am aware enough to know that these obsessive thoughts do not reflect reality. Unfortunately, my mental health is such a mess that I still think them. Thanks, gluten!
Update January 20, 2012
Did I mention my skin is really bad? My cheeks are red and dry, my forehead has been peeling this whole time. I’ve been rubbing coconut oil in all the time which helps a bit, but doesn’t compare to the benefits of a good diet. Sigh. It’s not just the winter. My skin was much better last winter when I was gluten-free, for the first time ever.
My bad breath and body odor are even worse if that is possible. TinyHands practically runs away retching when I get too close. I’ll be glad when this is over.
Update January 21, 2012
I just realized I never mentioned my ears ringing. It’s not all the time, but has been happening frequently over the past month or so.
Anyway, I had a total mental breakdown into an incommunicative, OCD, twitching, stuttering mess today. If I’m not adequately gut-damaged, I’m surely adequately brain-damaged. I was shooting for three months and didn’t quite make it for two, but I’ll be getting my bloodwork this week. After that, no more gluten.
So tonight I went and had the two foods I’ve wished for – Mississippi pizza and a cinnamon roll. These are things I wouldn’t normally eat in the best of times due to the dairy and the sugar. I was feeling so horrid anyway, I figured what’s the difference?
There’s a new blog a-comin’ about my big crash. (Here it is: I Fought the Gluten and the Gluten Won) Just a few more days and I’ll be done with this experiment.
This post is a part of Monday Mania on The Healthy Home Economist.