Is Gluten my enemy?

[Zen]

So... In the never ending quest to discover why my daughter, who was diagnosed with Hashimoto's Thyroid last summer, is continuing to have symptoms despite the fact that her hormone levels are in the correct range with her current medicaton, I did a little bit of searching and found a possible culprit: Celiac Disease. Looking over the symptom list, they fit many of the problems she is currently having.

After I brought this topic up, it was tabled for a while because we were trying a couple of things, like a different formulation of her artificial hormone medicine, etc... and we didn't want to do too many things at once. Then my wife talked with a coworker who, when she was in nursing school, self-diagnosed herself with Celiac Disease and was proven correct. (Her doctor really didn't think she had it and she had to push to get tested.) She started listing the symptoms that she had when she was on the verge of flunking out of nursing school because of them. About halfway through the list, my wife said, "I need to sit down now..." Every symptom she listed was one that either my daughter has, I have, or both!

When she told me this, I said, "We have to get her tested." My wife then looked at me pointedly and I continued, "Yes, I need to be tested, too." So, we got blood tests and, low and behold, they came back: NEGATIVE. So much for that. However, only 75% of people diagnosed with Celiac Disease actually test positive via a blood test. (The real test is a biopsy to look for intestinal damage.)

So, where do we go from here? Well, my wife and I decided that I would try to eat a gluten free diet for a few months and see if it made me feel any better, then reintroduce gluten and see if it made me feel worse. You see, I have had "Irritable Bowel Syndrome" (IBS) since college. It is one of those wonderful non-illnesses that doctors tell you you have when they can't explain your symptoms. In particular, IBS issues have actually caused me to miss work several times over the past couple of years, and lead to me working from home even more often. So, if I have reduced IBS issues, it would be somewhat of a positive result of the trial. However, from what we have read, the real trial is how my body reacts to the re-introduction of gluten. We started the trial on April 1st. (no joke. LOL)

So, about 10 days into the trial, I was preparing dinner using some Thai rice noodles we had found at the store. My wife wasn't interested in trying them out as spaghetti right away. If the texture was totally wrong it would just make a bad meal, after all. So we decided to make Teriyaki Chicken using some teriyaki sauce that we had in the fridge. It tasted great and I took it for lunch on Monday as well.

Monday morning, I was having ... some IBS type issues, then at dinner Monday night, I started having the pain right below the rib cage on the left that has always been the real harbinger of an IBS attack. I was feeling a bit down because it seemed like this might mean eliminating gluten wasn't going to help anything, then I wondered... What is in teriyaki sauce?

We had thrown away the bottle, of course, but we had some other sauces by the same company in the fridge. Orange sauce and General Tso's sauce BOTH contained wheat! So, 10 days into the trial, it is highly likely that I was accidentally "gluten-ed".

Tuesday morning when I tried to wake up, after having had so much trouble getting to sleep that I probably only had about 1.5 to 2 hours of it, I had the worst "brain fog" (another symptom associated with Celiac, as well as Fibromyalgia, which I was diagnosed with years ago) I have had in YEARS! I couldn't operate my phone. I couldn't think straight. I couldn't read a DIGITAL CLOCK!

I thought it was almost 7:00 and that my wife was going to be late for work. I got up as she was leaving, ate breakfast, had IBS pain and ... other symptoms ... as a result of eating. Looked at the clock and it was: 6:35. I realized that, not only was I not safe to drive, but I probably wouldn't be able to do anything without messing it up at work. So I sent an email stating I was staying home sick and would login in the afternoon if I felt up to it and went back to sleep...

This seems to weigh fairly heavily on the "I might be gluten sensitive" at least. The brain fog episode puts even more weight on the "I might have Celiac Disease" side. Since then, I have had some minor IBS symptoms, but have not had any full blown flares. I have managed, as far as I know, to remain gluten free over since the teriyaki incident, but I have eaten some things that were "processed in a facility" where wheat is processed and had some symptoms afterward, so I have eliminated those from my diet as well. I am trying to eat only things that are labeled as gluten free, but occasionally I have to rely on the label not having any obvious source of gluten and it listing OTHER common allergens in the warnings or the "processed in a facility" listing that do NOT list wheat. I will continue with this test until July 1st, when I will indulge in a gluten heavy meal and see if it totally screws me over... However, I am going to have to see my doctor next month to reauthorize some of my medicines, so I may see if she thinks the evidence I already have presented is enough to order a biopsy to check for Celiac Disease... (I also have maxed out my "out of pocket" on my health insurance this plan year, so it is a good time to get any procedures done that I might need... I'm making a list of spare organs that I might want removed...)
(Just kidding about the spare organs...)
If it turns out that I do have Celiac or at least a gluten intolerance, the big thing will be to convince my daughter that she should give the diet a try... I wonder if anyone makes gluten free croissant rolls? I'm not sure my daughter can survive without them, since they are one of the few foods she will always eat... (she eats like a flea already...)

[Stan]

Getting a picky eater to eat new stuff is hard. I know from experience.

By the way, I checked and, despite the name, buckwheat isn't even a grain. It's a flower seed and gluten free. However, most soba noodles are often made with a mix of buckwheat and wheat.

[Mike]

Kyle may have advice or recipes for you. He has been forced to be gluten and dairy free for years.

One of the advantages of the recent anti-gluten fad is that at least real sufferers like yourself can benefit from the extra awareness and labeling. Although, as you've already noticed, it is far from perfect.

[Tahlvin]

We have a bakery in Madison for people with Celiac Disease. It's called .

[Kyle]

Zen- you're describing my symptoms to a T. I didn't know anything about gluten sensitivity or celiacs at first, but had my endocrinologist suggest that I go off gluten (celiacs can mess with the way you metabolize your thyroid medicine). So I went off of it, but slowly started cheating. Without knowing anything about the conditions, I distinctly remember complaining about fatigue and "cobwebs" in my brain whenever I cheated with large amounts of gluten (normally tortillas). Eventually I looked into it and educated myself and went off gluten for good. That was 4 or 5 years ago. About 2 years ago, I decided to try gluten again. After 10 days my arms (starting with the elbows) broke out in an itchy, blistery rash. It turns out that is associated with celiac's disease. So I went off gluten again and have been off of it completely for the last two years.

As a separate matter, I've had chronic hives for the last three months (don't ask-- the WORST!) and went to see an allergist/immunologist who is running a bunch of blood work on me to see what's causing the hives (immune-deficient disease or allergies)- but part of what they're testing me for is celiacs. Although I heard that you can't test positive if you haven't eaten any gluten, my allergist said that's not true.

I get the results back next Wednesday-- I'll update you then.

But whether I test positive for celiacs or not- here's the decision I made a while ago: do what makes you feel better and don't do what makes you feel worse. I don't care if I have a gluten sensitivity, celiacs or it's psychosomatic-- when I eat gluten (and dairy), I feel bad. When I don't, I feel good. So I'm off gluten.

[Zen]

I totally agree. I'm not positive that it is going to work yet, but I'm going to give it a try...

BTW, I found a pretty good app to find information on gluten free restaurants. It is "Find Me Gluten Free" (or "Find Me GF") the link to the web page is . The app is available on either Android or Apple.

[Kyle]

Also consider depression. I'm not saying you're depressed, but symptoms of depression can actually be masked by associating them with other things like food allergies or gluten intolerance.

[Elle]

Totally agree you should stick with whatever healthy diet is making you feel better, regardless of the cause. Two of my favorite grain-like foods happen to be gluten free: quinoa and cornmeal mush. Quinoa is so versatile and comes in many varieties. A few years ago I had never tried it and now it is a staple of my weekly diet. Cornmeal mush sounds like a bad thing, but basically it's cold polenta that you chill and dehydrate overnight, and then slice and fry the next morning. Plus maple syrup. You cook it at very high heat so it makes a bit of a crust. Heavenly!

[Elle]

Also Cheerios. What else do you need, really? Cheerios, a piece of salmon, an avocado, a lime, corn polenta, quinoa, maybe with a little kale and cauliflower, and a martini. Boom, your day is solved.

[Cazmonster]

My twins, who turn 12 in July, are 5'4" and 5'3" and weigh about 180 each.

They are 47% cheerios and milk, guaranteed.