Conclusion: Gluten-Free Trial

Posted on July 18, 2014 by Laddie

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.

*******

Previous posts pertaining to my GF trial:

Gluten-Free

Gluten-Free Update

Posted on June 23, 2014 by Laddie

Today is the 9th day of my 3-week gluten-free (GF) trial. Last Monday’s post outlined my reasons for this experiment and discussed my doubt that this diet will make any difference in my health status.

Has it been hard to do?: So far the diet has been easy to follow. Because I have been eating low-carb for quite a while, bread has had a small role in my life: just an occasional piece of peanut butter toast. Cereal has been completely banned except for an infrequent handful of Honey Nut Cheerios for a needed junk food fix. I haven’t bought crackers in months except for six-packs of Ritz peanut butter crackers. Ice cream is our usual household fix for sweet and chocolate.

The food plan that I’ve followed in the last 9 days has been a non-cheating version of my normal diet. I believe that if I’m going to bother giving GF a try, then I must stay completely GF for the 21 days. A trial with cheating or even one cracker becomes invalid and means that I’ve wasted my time.

Any goofs?: The closest that I have come to eating a wheat product came when I was fixing lunch for my 1-year old granddaughter on Wednesday. As every parent/grandparent knows, it is easy to nibble when fixing meals for children. I was putting small pasta shells on her tray and twice caught myself grabbing one for a taste. What a bummer it would have been to accidentally go off the diet with mindless eating.

Blood sugar effects?: There was nothing about this change in diet that noticeably affected my blood sugar. I had many good days and a few mornings with unexpected highs. As always, the problems were related to activity levels more than diet. I walk the dog for 45-60 minutes almost every morning. This moderate but sustained activity works miracles in preventing post-breakfast spikes. One would think that the hour and a half I spent bailing water out of the sump on Thursday morning (the pump couldn’t keep up with our massive rainfall) would have had kept my blood sugar in range. But my reward was a dry basement accompanied by highs approaching 200. On Friday morning the grandchildren were with me and made a long walk impossible. I increased my insulin but obviously not enough to tame my BG. Nighttime blood glucose levels were much better than normal all week because of minimal snacking after dinner.

Do I feel different?: After 9 days I feel the same and there has been no change in my granuloma annulare. It would be naive to expect anything different. I didn’t do this trial because of digestive problems or feelings of illness or fatigue and those are the things that sometimes see immediate improvement. Granuloma annulare tends to be a constantly morphing condition with no rhyme nor reason. If diet were to have an impact, I would expect it to be a change that would be many months in the making. Even then it would be difficult to prove that diet was responsible for any improvement.

Any special foods?: The only special GF product that I purchased is a loaf of bread from Trader Joe’s. Right out of the package it is totally rude. Toasted with peanut butter it is okay. One piece of bread is approximately the same carb count as my usual bread, but it is half the size (very small). Although I understand the arguments for avoiding wheat, I look at the list of ingredients in this Rye-less “Rye” and am askance at the leading ingredients of water, tapioca flour, white rice flour, and rice starch. IMO these are neither nutritious nor blood sugar-friendly foods.

What now?: I am committed to finishing my gluten-free experiment. Because it is not a substantial change to my diet, I believe that the only way this diet can help me is if I have a wheat sensitivity. I don’t think that I do. Because I am eating a lot of fruit and vegetables and not a lot of processed food, this should be great for my diabetes and maybe help me lose a pound or two.

Summary: Unlike people who hope to see improvements in their health from a gluten-free lifestyle, I don’t want to deal with this diet for the rest of my life. I’m actually keeping my fingers crossed that I see no benefits. But what if it does help my granuloma annulare? Less unsightly skin versus pizza? Interesting choice. I guess I would have to learn to make cauliflower crust pizza. Then I would have to look in the mirror and seriously weigh the benefits of a life without pizza at Costco.

Gluten-Free

Posted on June 16, 2014 by Laddie

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.

Follow-up

Posted on June 9, 2014 by Laddie

Laddie_Head Square In Thursday’s blogpost I discussed how I had considered postponing my endocrinologist appointment because I didn’t like what it might reveal. I went to the appointment as scheduled and except for my interaction with one of the nurses, it was uneventful. My doctor is part of a large endocrinology group and I have never received anything other than knowledgeable and professional care from her, the nurses, and the support staff. Thursday was an exception, but in a more humorous than problematic way.

I had never met the nurse who called me back, but I assumed that she was a regular in the practice. The first question she asked was “Are you taking your Lantus?” No, because I don’t take Lantus. I use an insulin pump. “Are you taking insulin with your meals?” Of course I am because I have Type 1 and rarely eat without taking insulin. “How is it going with your Novolin?” Rather than explain that Novolin refers to NPH, Regular, and various mixed insulins produced by Novo Nordisk, I explained that I had never been asked these questions before and suggested that maybe they didn’t make sense. “Did you bring your meter today?” Yes, but I downloaded everything to Diasend and you can print out the reports for my doctor. “That’s good and I’ll do that. Did you bring your pump with you today?” Silence.

Later in the appointment I learned that this nurse is one in a series of temps replacing the usual nurse who is on maternity leave. Her ignorance wasn’t particularly annoying; it was just odd. She couldn’t have been nicer and was doing her best to follow whatever instructions she had been given for updating my chart. After taking my blood pressure, she said that she’d leave everything else for the doctor and quickly escaped to print Diasend reports. For my visit her lack of knowledge was inconsequential, but it was a reminder of how little some medical professionals know about diabetes.

And now (drumroll please) my doctor appeared. Her first question, as always, was “How are you?” That can be an ultra-trite question, but I think she asks it to give me the opportunity to set the direction of the appointment which is never long enough to cover everything. I believe that she would be open to discussing anything whether it be BG numbers, thyroid issues, or mental health.

My concern of the day was my multiple autoimmune/inflammatory issues and wondering if she had any opinions on whether a change in diet (particularly gluten-free) might be beneficial. She indicated that there is no strong scientific evidence to indicate that a gluten-free diet would make a difference in my health, but anecdotally she has patients who feel that it has made a difference. She suggested I give it a 3-week trial.

Now is not the best time for a gluten-free trial. I am dealing with a frustrating skin condition called granuloma annulare (a topic that warrants its own blogpost). Because I have the disseminated form of GA, I have abandoned topical products and am in the early stages of trying to find a drug that will slow down or eliminate the autoimmune/inflammatory condition. I see my dermatologist this week and expect that I will be moving to a new class of drugs. It doesn’t make sense to change my diet at the same time that I change medications because I won’t know if any improvement is from the new drug or the elimination of gluten. So a gluten-free experiment will have to be put off for a while. My opinions about going gluten-free are also worthy of a dedicated blogpost and I’ll save those thoughts for another day.

Back to my endo appointment. I have been frustrated by overnight highs that occur between midnight and 2:00AM. My endo ignored those and was more concerned FollowUp_Clipboard with the lows that precede those highs. I guess that I was aware of the lows but didn’t see the cluster of them the way that she did with her usual expertise at seeing patterns in CGM tracings. Sometimes I think that I’m too deep in the trees to see the forest. In my opinion, both the lows and highs are caused by the same thing: too much after-dinner eating that is not matching up well with my insulin. She’d like to see me reduce my basal and bolus rates through the evening. I’d like to see a reduction in post-dinner snacking which is really the cause of both the highs and lows. I am working on the problem and already seeing some improvement.

I didn’t get any comments on my weight gain (!) so it’s back to me to deal with it or not deal with it. At the very least I don’t want to gain more weight. My guess is that if I take care of the blood sugar problems from evening snacks, the weight will take care of itself. Imagine that. Everything is related to everything else.

In summary I survived the appointment. My thyroid tests were in range and my A1c was much better than expected. I only see my endocrinologist twice a year so the countdown to December has started. 20 minutes with her. 262,780 minutes with me running the show.