Celiac disease | Test Guess and Go

In mid-June I embarked on a 3-week gluten-free trial. Previously I had asked my endocrinologist whether she thought a gluten-free diet might help with my clustered autoimmune issues. She surprised me by suggesting that I give it a try.

Although I began the trial doubting that GF would make a difference in my health, I wholeheartedly committed to following the diet strictly for 3 weeks. One week into the diet I posted an update that I didn’t think it was having any effect on how I felt or the appearance of my inflammatory skin problem. At the end of 3 weeks, my opinion had not changed.

I don’t think that my eating plan for those weeks would have been a sustainable diet for the rest of my life. For the most part I followed my normal lowish-carb diet and just avoided bread, crackers, and other no-no foods. My only GF-adapted food was a bread that was edible when toasted and slathered in peanut butter, but disgusting otherwise. I know that there are wonderful GF recipes and foods out there, but I didn’t bother looking for them.

I am relieved that gluten-free is not part of my future. Initially it made following a low-carb diet easier because no cheating was allowed. Over the long run it would have been complicated because many wheat substitutes are things like tapioca and rice that are not kind to blood glucose levels. Similarly many healthy substitutes require a lot more interest in planning, chopping, and cooking than I possess.

In my opinion the gluten-free world is a continuum with those medically diagnosed with celiac disease on one end and faddists who insist on a gluten-free entree before emptying the bread basket on the other end. In between are people with varying degrees of gluten sensitivity and differing opinions about the value of a gluten-free diet. If you absolutely require GF due to celiac or if you just think it makes you feel better, then go for it. I have no reason to doubt you or judge your decisions. I know a couple of people who definitely feel better avoiding gluten-containing foods and I’m glad they have found something that improves their health.

On Monday I was interested to read a blogpost about a gluten-free trial by another person with Type 1 diabetes. Sarah of Coffee & Insulin had not felt well for months and tests for GF Experiment Flask celiac, gastroparesis, and other ailments had come up negative. Responding to Sarah’s frustration at getting no answers, her doctor encouraged her to “Experiment. Only you know how you feel. A patient knows their body far better than a doctor does.” One week into her GF trial, Sarah felt immeasurably better and plans to continue on the diet.

Was Sarah’s trial a success and mine a failure? Absolutely not. We both experimented and happened to get different results. I hope that she continues to feel better on a gluten-free diet and I am glad to not add more dietary restrictions to my life. In some ways I think that the biggest win from this whole thing is that both Sarah and I have doctors who were willing to admit that medical science doesn’t have all of the answers and that patient experience and opinions have validity. Sounds like a win-win for patient empowerment.

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Previous posts pertaining to my GF trial:

Gluten-Free

Gluten-Free Update

I am a doubter.

But I have a bunch of autoimmune/inflammatory issues that anecdotal stories report improvement when switching to a gluten-free diet. I don’t have celiac or at least it’s highly unlikely that I have celiac. I don’t have any of the digestive issues that often go along with celiac. I’ve had the blood tests and all were negative. I feel perfectly fine regardless of what I eat except when I am plagued with guilt at some of my poor food choices.

I am a doubter.

At my last endocrinology appointment I asked my doctor whether she thought a gluten-free diet might help me as I struggle with clusters of autoimmune issues, most recently a skin problem called disseminated granuloma annulare. I expected her to say “no.” She didn’t. I indicated that I didn’t know if I had the discipline to follow a gluten-free diet. She asked me whether it was worth getting rid of the dermatological problem to change my diet. I couldn’t argue with her. She indicated that there is no scientific evidence to support a GF lifestyle for people like me, but she has patients who feel that it has made a significant difference.

I am a doubter.

Yesterday I began a 3-week trial of eating gluten-free. I have been working hard in the last two years to eat lower carb, so a gluten-free diet is not a huge change. In fact since there is no gray area with gluten-free, it may help me avoid the post-dinner “eat a lot of crap.” One pack of Ritz peanut butter crackers will nullify my trial and I don’t want to do that. I don’t plan to buy many products that imitate real food but with no gluten. Meaning I plan to go without bread rather than buy breadly concoctions that purport to be bread. Actually I may need to buy some GF bread because I don’t think that I can live without my natural peanut butter.

Gluten Free

I am a doubter.

One of my favorite people in the Diabetes Online Community is Katy from Bigfoot Child Have Diabetes. Her son was diagnosed with celiac disease last year and I have marveled at the changes she has made in her kitchen and cooking. My GF experiment would be truly epic if I could move in with Katy for three weeks and eat her tantalizing chocolate chip cookies for breakfast, lunch, and dinner…. Jewels from SheSugar runs a gluten-free household, but admits that she doesn’t suffer with a bit of cross-contamination while her daughter with celiac suffers greatly. I have decided to do my best to eat GF without worrying about cross-contamination.

I am a doubter.

I’m not from Boulder. That is an inside joke. Boulder, Colorado is a trendy community. No matter what the latest fad for eating or living is, you’ll find Boulder residents leading the way. The husband of one of my Arizona friends (they’re officially from Boulder) has had measurable success eating gluten-free. My friend indicated that it was easy to avoid gluten in Boulder because half the population is gluten-free and almost every store has a huge assortment of GF products.

I am a doubter.

I made it through one day. I am keeping a log of my eating with carb counts and insulin bolus amounts. Every food so far has a check in the Gluten Free column. My endocrinologist indicates that a 3-week trial is sufficient. If I had digestive issues or “not feeling good” issues, I would agree with her. With my skin issues, I don’t know whether 3 weeks is enough. But I’ll deal with that 3 weeks from now.