Thursday, October 11, 2012

The ticky, tacky world of Gluten Free

In the three months since I've last posted, I've begun to delve into the world of the gluten free. Not for a fad diet (if I hear another customer at work ask me if gluten free is healthier and then look at the GF cookies, I may lose it--or just have yet another conversation explaining who and why should avoid gluten and why any processed food is avoidable), but because wifey and I put two and two together and realized she just may have some sort of gluten sensitivity.

Let's go back three years ago... to a time when we still lived in the South Bay with three other roommates, I had just left Starbucks to work for Whole Foods Market, and my wife was beginning to experience a few rather strange symptoms that appeared to be allergies. The worst were the welts. Seemingly out of nowhere, large swollen itchy patches would raise up on her neck, shoulders, back, or the tops of her feet, lasting about a day or so. She'd usually get only one at a time, so at first we kind of thought it might be an irritation, maybe to a bra strap or bug bite. Then we thought it must be the chemicals in the laundry detergent, so we switched from Tide Dark to all natural, fragrance-free Seventh Generation, also dropping my favorite-ever vanilla lavender scented drier sheets. Seemed to work for awhile, until she got "one of those bumps" again. It appeared to coincide with the consumption of a rather large amount of Taco Bell--the only fast food we ever ate--so we thought maybe there was some sinister and gross fast food preservative or ingredient that should be avoided. This was probably not a bad idea anyway, quitting fast food, but a bump came up again. Frustrated, in pain, and sick of not knowing when and how these welts would appear (she would come home in tears after having to walk around all day at work with a swollen foot), Wifey went to the doctor on her next day off. What occurred there at that office disturbed her so thoroughly that she had not returned to any doctor for two years. Since she didn't have a current welt at the time of the visit, she went in describing her symptoms and to the best of her knowledge, what she was doing or eating when she got them. The doctor began showing her photos of patients with growths and rashes on their genitalia.

I'm not kidding.

Despite wifey saying over and over that they were not and had never been in a private area--gesturing wildly to her shoulders and feet--the male doctor continued to insist she look at photos of STDs. He did manage to write a prescription for cortisone cream before she left, but failed to ask any real questions that might lead him to a diagnosis other than STD or random skin rash.

With her fear of that office firmly in her psyche, wifey and I continued to try to troubleshoot her puzzling symptoms on our own. She kept most of it to herself and I thought for years that the main problems were itching (soles of the feet and palms of her hands) and the welts. We did the Engine 2 diet, and she felt relieved of the symptoms, for the most part. When we went off the diet, ordering a pizza or sandwiches or something else "bad," she felt horrible the next day. She started to notice that when she was on Engine 2 and didn't cheat, she appeared to lose drastic amounts of weight very quickly. She would go down a shirt size in a week. Imagine her frustration when we slowly went back to more "normal" eating and she seemed to gain all the weight back. As time passed, she lost more and more energy, to the point that she would sit down when she got home from work and didn't want to move until she went upstairs to go to bed. I began to get frustrated with her "laziness"! Thinking she just wasn't trying to help me out around the house or go out and do things together.

When we were juicing everyday earlier this year, we noticed that her energy spiked, her shirt size went down again, she lost about 12 or so pounds in a week, and she was experiencing no bumps. Yay! But hey! Juicing is not a sustainable way to live! So despite our best efforts to try and eat "well," she went back to what had become her "normal." Which was not normal at all and was no way to live. I recall one day during the summer that I emailed her at work asking if we could take a walk together with the dogs when we both got home. Her response was, "Sure, if I can move. I can barely walk up and down the stairs here." I didn't know how bad it actually was for her, even then.

Very recently my store hired a healthy eating specialist, and always being very interested in nutrition and diet, I would often talk to her about our attempts at eating healthy, vegan, and most recently juicing. I mentioned to her wifey's improvements while juicing. My friend looked at me and said that when she was advising clients having any kind of issue, she always first told them to try an elimination diet--and first to eliminate gluten. She said there are many common problems that clear up once gluten is out of the picture. I was curious now, but kind of thought this was a whole lot of hippy dippy nonsense--I mean, unless you have Celiac disease, why would you need to avoid gluten--and come on, I think we'd KNOW, right? My wife was a chef... she'd know if she had a food allergy! Still, I went online and googled gluten free. I found websites and blogs with people's personal stories and journeys of how they discovered they were sick. I read for hours, clicking back and forth between windows, cross referencing stories with WebMD and Wikipedia.

I was horrified.

All the stories I read involved the person being sick for years--YEARS!--nearly to the point of not being able to function, or enjoy life. And going to many doctors who never, ever suggested that gluten may be the cause! Until one day, because of one symptom or doctor or whatever, they were tested for celiac disease and eliminated gluten from their diet. So simple--yet doctors seemed to know nothing about this! What was going on?

The symptoms varied wildly and I didn't see much of a connection at first; i just kept reading because I felt for these poor people! I wasn't really convinced that this might be Wifey's issue until I read a few articles in particular that spoke of the varied symptoms, the peculiar effects on weight and how gluten causes malnutrition, and especially the autoimmune effects. These I saw my wife in. Her brother and sister both suffer from autoimmune diseases as well--gluten may even be affecting them. I began firing off the links to her work email right away.

http://www.celiaccentral.org/disease-symptoms-checklist/

http://glutenfreeworks.com/blog/2010/01/21/weight-gain-in-celiac-disease-how-to-lose-weight-on-the-gluten-free-diet/

http://glutenfreegirl.com/symptoms-of-celiac-and-gluten-sensitivity/

When she got home that day, I explained that it sounded crazy, but this could explain the welts and the bloating and the weight gain and the itching. And I said, I know I bombarded you with a lot of information, but here's why I think you need to look into this... clearly I was expecting an unreceptive response. She just said that she'd read all of it. All the links I sent her. And he began to tell me more about her symptoms that she had never said anything about before. About how her joints hurt so bad that she couldn't move in the mornings and she'd have to swing one leg over the other to get out of bed. How she was so sore and tired all the time, she was certain she had cancer. I felt terrible because the whole time I'd really thought she was being lazy. But this was real pain.

She stopped eating gluten right away, and within a couple days had an appointment with a specialist recommended by a co-worker. She had blood taken for testing. Last week, she received confirmation from the tests that she has gluten sensitivity, but we'd known for weeks--when she stopped eating gluten, she suddenly was made aware of when she accidentally ingested it. Like when we went for Ethiopian food and requested gluten free injera, and she was sick the next day (they forgot and gave us injera with teff AND wheat). Or when we made cocktails and by her second drink the palms of her hands were itching--read the back of the bottle only to discover that Grey Goose is "made with the finest French wheat." Oops. But yes--we learned. We already had confirmation.

Wifey is going back today to discuss the results of the testing in depth and learn more about how to get her health back. I'm nervous but excited. It is incredibly hard to see your spouse struggle with an unknown enemy, watch them change into a different, sad person before your eyes and not know how to help them. I'm optimistic and I can't wait to jump into a new way of living, and seeing my wife be alive again.

1 comment:

  1. You are an awesome supportive partner! I hope your wife feels much much better, soon.

    xo
    kittee

    ReplyDelete