Wednesday, August 24, 2016


After years of struggling with other autoimmune disorders (PCOS, Hashimotos, and Ulcerative Colitis), I was DONE. I was living an existence of being sick for two weeks, barely able to crawl out of bed due to extreme exhaustion, feeling "okay" for a week and so risking an outing, and then back to being sick.

When I say "outing" I don't mean a whoop-it-up night on the town. I mean going to a friend's house for an afternoon, or doing a day of substitute teaching, or going for a quick, easy, hike with my husband, or, to really push it, go for a weekend up to the river. Nothing outrageous, but that one thing would send me into a tailspin of exhaustion and illness that I just couldn't crawl out of. I constantly told friends and family, while making plans "I'll have to see how I feel." Sometimes I pushed it, knowing the event was important, and knowing I would "pay" for it in the following weeks.

At my lowest I even told my husband, should I die, I wanted him to marry a certain person because I thought they would be a great match. As what I said sunk in over the next few days, it really freaked him out. He realized that I was saying this because I was always so sick. He called me while he was at work to tell me that we needed to figure this out. There had to be something, anything, that would help me feel better. He wasn't willing to just say "this is how you feel, will always feel". He reiterated to me that I was usually sick two to three weeks out of the month, and asked if I really wanted to live like that - one week out of the month, one "good" week where we had to cram in as much "living" as possible, knowing it would set off some autoimmune reaction and I would be out for the count.

I cried. I was upset. I was pissed. I told him "this is what having an autoimmune disorder looks like. I'm doing all I can. I'm seeing specialists. I have three autoimmune disorders. This is just what it is". He refused to believe that. He offered to come with me, talk to my specialists, explain from an outside perspective what he was seeing (those with autoimmune problems tend to downplay the issues they are having, even to their doctors, because the symptoms are their normal). He then suggested something my mom had been saying for a couple years - "what about trying gluten free?"

Those who know me know I already had some diet restrictions because of the Hashimotos and Ulcerative Colitis. For years, I fought the gluten free suggestion because it was just one more thing. I had also done the research on Hashimotos and gluten, and how once you go gluten free, you can't go back - basically with Hashimotos, your autoimmune response attacks the thyroid cells. If you try to return to gluten after going gluten free, your body starts to see gluten proteins as thyroid cells and attack them, causing more autoimmune responses. All these years I refused to go gluten free because I didn't want one more restriction that changed nothing, and could not be changed back. I was nervous about the undertaking of going gluten free, especially considering that if it didn't work, I could not go back to a gluten diet because the autoimmune response would be worse.

For whatever reason that day, my husband's question made me pause (sorry, Mom!). I told him my reasons for not wanting to "try" a gluten free diet. It had to be all or nothing, and I wasn't willing to do that without a confirmed gluten sensitivity test. He asked why I wouldn't take one, and I didn't have a response.

So I called my endocrinologist and explained that I would like to see if my Hashimotos was affected by a gluten intolerance. She told me not to be surprised if it came back negative, but that going gluten free could help the Hashimotos.

A few days later, the diagnosis of Celiac came back. Not just gluten intolerance, but Celiac. Another autoimmune disorder to add to my list. When gluten is in the system, the Celiac body puts up an attack in the form of an autoimmune response. It isn't an allergy (although symptoms for me come on in about 30 minutes), it is a full-blown autoimmune attack. Basically, for who knows how long, my body had been attacking itself on a daily basis. My immune system was in constant overdrive, working to clear the invader from my body. This is why I would have two-three bad weeks, and only one good.

I remember getting the notification and opening it up to read the results to Jason, and just full-stopping when I got to the diagnosis. I instantly started crying. Jason was hopeful that this would finally be it - this was the missing piece to finally feeling good. I was both hopeful and devastated.

I originally wrote this back in April, as a Facebook post to just vent. It was really indicative of my feelings of gluten free at the time:

"It is silly to be sad to lose something that has such consequences on my body.... This weekend, I chose to "gluten it up" one last time. Tomorrow is the start of gluten free, but this weekend was a chance to have some of my favorites one last time (the easy, glutenated version, anyway). One more favorite sandwich from that hole in the wall in Miramar, breakfast sandwiches in the morning, a salad with croutons and dressing I don't have to scrutinize or ask for a detailed list of ingredients, homemade cookies, beer, and, one of my favorite comfort foods, grilled cheese sandwiches. All week I have felt awful, because I have consumed extra gluten in the hopes of having an accurate test. This weekend I really over did it in the hopes of having "one last", and it was so bad that I started declining things. I honestly wasn't really upset about anything that I was going to have to give up. It seemed like every item took a turn that is the universe telling me this is what is supposed to be. Mayo on the sand which. Cheese bread that fell in baking, so grilled cheese wasn't as good. Beer that, while good, can be substituted for gluten free (which one of my favorites is, and Jason can make gluten free). I also feel awful. Things that I have felt for a long time that, after being diagnosed, I realize is as a result of gluten. And making a weekend completely gluten filled amplifies it all. Horrible headaches, a constant stomach upset, being so exhausted that I have had to take a nap every day just to be able to "adult" later. This whole weekend I have just felt awful, but I have been really hopeful that the amplification of these symptoms means that once the gluten is out of my system completely, I might finally feel "normal" again. 
And then I decided to have one of my favorite beers one last time. Jason emailed the brewery this weekend, asking if they use clarity ferm, which is a product that reduces the gluten in beer so much that it is gluten free. Some breweries use it but don't advertise, because each batch made has to be sent off for testing to prove it has no gluten, but if it is used it is safe for me to drink. The brewery in question does not use it. So I had one more. And, unlike everything I had eaten, this taste I will miss. And it brought up all the anxieties I have been feeling about what this process will entail. Beer aside, Jason and I already eat a reduced gluten diet. My issues with soy mean we stay away from most processed foods. We cleaned out cupboards this weekend, and they are still almost full. A little pasta out, some flour, and some croutons. Not much. 
The freezer, however, was another story. I am the baking queen, and I bake in bulk. I find it easier to make a double batch of French bread, and freeze them into mini loafs so that one can be quickly pulled out for dinner. We make our own hamburger buns, and do so in bulk. I make cookie dough in double, sometimes triple batches, ball up the dough and freeze it, so I always have a dessert handy and quick. I enjoy baking. It's one of the few things I can do without exerting a lot of energy, and so on those really bad days, when the 3 (now 4!) autoimmune disorders decided to band together against me, trying to force me to stay in bed all day, I could still bake. Nothing else might get done, the dishes might stay in the sink, but I at least could feel I accomplished something.
And then I drank this beer. A beer that, knowing Jason and his palate, he will be able to replicate. But this beer was the first instance of, "I'm going to miss gluten". It opened the floodgates of how far reaching this ingredient is. Especially a baker like me. It is a HUGE part of who I am, and frankly, I really enjoy knowing something I've made was successful, and I really enjoy people telling me they enjoyed it. Gluten free baking is tricky. I have a lot of things I bake that are gluten free, but there are a lot more that are not. And that is daunting. I am having a moment of life already being hard enough without taking another part of my identity away. Enough of my identity has been - the girl who thought she would be a mom, the adventurous girl, the girl who never said no to hanging out with family and friends because she always felt good, the girl who could make plans in advance, secure in the knowledge that it would always be a good day. I am really hopeful that parts that have been lost will return with this drastic measure that MUST be taken. But tonight, I am wallowing a bit in the enormity of the struggle I may face regaining my identity of queen baker - even if it is queen gluten-free baker - and I am bitter that, yet again I am being forced to give up another part of myself, even if it is only temporary or slightly changed."

It has gotten better. I trial and erred my way into some great gluten free recipes (which I will share!). I found great resources and not so great ones (again, will share!). Jason was able to make a better version of the beer, "gluten reduced" (It is called this because it was made with gluten ingredients, so it can't be called gluten free. But the enzyme he uses takes it below 20 ppm which is what is considered GF). I still have my days of "being gluten free is NOT FAIR" (particularly when I am shopping and smell the Cinnabun, which I am convinced has special vents that are connected throughout the mall to taunt you), but I am feeling better. A cold, which usually had me in bed unable to move or accomplish anything for three weeks, now takes a couple days to run through my system. The last cold I had I was able to hike in 100 degree weather - I kept asking if this is how "normal people" felt with a cold - like they could still accomplish life and they weren't dying. It seems like an extreme statement to make, but when your body is constantly having an autoimmune response to one thing, and you add another "attacker", a cold really can make you that miserable.

I still have my bad days. I have four autoimmune disorders, all with a host of vitamin deficiencies and symptoms that are typical for each. My bad days however, are now typically that - days instead of weeks. I've been more healthy since April (when I was diagnosed), than I have been in the years past combined. It makes me hopeful for life again. 


  1. Oh sweet girl, I'm crying for you too. You are strong inside, so even though it's not fair, and you often won't feel like being strong, I know you got this. If you ever want to cry whine or vent, I'll listen.

  2. Oh sweet girl, I'm crying for you too. You are strong inside, so even though it's not fair, and you often won't feel like being strong, I know you got this. If you ever want to cry whine or vent, I'll listen.