Maltodextrin

Maltodextrin is a tricky product; I’ve found it on both gluten-free and glutinous product lists*, which can be confusing for those new to this gluten-free thing (that includes me.)

Polaner All-Fruit (PAF) has been a favorite product of mine for decades. It’s all-natural preserves made from fruit and pectin, sweetened only with fruit juice. I liked that PAF had no added sugar or corn syrup, and it tasted great. I regularly used it, along with natural peanut butter, on whole grain bread for “grown-up peanut butter & jelly.” When they were on sale about a year ago I bought more than 20 jars (yes, really. I still have a dozen of them.)

Unfortunately about 2 years ago Polaner started adding fiber to their preserves in the form of maltodextrin. Regular varieties (those without maltodextrin) can no longer be found.

Maltodextrin, like high fructose corn syrup, can also be found in a variety of products where you wouldn’t expect it (like whipped cream of all things!)

Unfortunately since I started my gluten-free diet, each time I’ve eaten Polaner All Fruit I’ve gotten very sick. That’s strange, especially considering PAF actually has “gluten free” written on its label.

When my mother visited me for New Year’s Eve week, a can of extra creamy Reddi-Wip was purchased and we dined on ice cream on an almost nightly basis. During her 8-day visit I hardly slept, spending each day exhausted and wondering if I was eating gluten-contaminated foods. (As it turns out I was.)

Despite a lack of familiarity with the extra creamy variety of Reddi-Wip, I did not expect it to include maltodextrin, and therefore did not read the label (oops) before using it. Since I’ve had absolutely zero problems with any of the other things I ate while she was here, I’m left to assume that the canned whipped cream – and the maltodextrin it contained – were the reasons for the chronic insomnia.

From what I’ve read, most maltodextrin is often made from corn, rice, or potatoes, which means it’s gluten free. In the celiac community it’s often said that in the USA if maltodextrin is made from wheat it must be labeled as such (wheat maltodextrin) but if it’s made from barley no such label is necessary. I have since found out that this is NOT the case, which can make it difficult for those of us embarking on a gluten-free lifestyle (that’s really what this is, considering the severity of the allergic reactions we can experience. Everything from our cosmetics/soaps, foods, and even cutting boards and other kitchen tools must be gluten-free and kept that way. It’s really annoying. I even have to replace my spice rack because I’ve used most of them in my regular flour baking days, and could have contaminated them via my measuring utensils. It’s a real pain in the ass.)

But I digress.

I’ve asked a couple of gluten-free people I know (one confirmed celiac, the other with a gluten allergy) whether or not they consume maltodextrin, and how they feel after doing so. I haven’t heard back from them yet, but due to my experiences with maltodextrin (vomiting, insomnia, fatigue, itchiness) I’m content to avoid it from now on. It will be difficult considering how many products use it, and I’ll have to become an even more diligent label-reader (many gluten-free breads and other products lack fiber, and maltodextrin is added to some of them to increase the fiber.) But, as I’ve said, my health is worth the sacrifice. And so is getting the sleep I desperately need.

Speaking of which, g’night everyone.

Here’s to a better tomorrow,

ecidnaC

* = I added a page today, a list of naturally gluten-free products and ingredients. Maltodextrin is not listed because it can be made from various things and not labeled as such.

The First Promising Day

I’m happy as I write this. Relieved, proud, and happy.

Today was the first real promising day, a day that let me know that this path I’m on is the right one, and the path I was on couldn’t be more wrong.

My day started normally. Well, I was considerably busier but the breakfast was my new usual (gf waffles, a little syrup, a piece of fruit.) I wolfed it down as I made an entirely gluten free 3-bean chili with grass-fed bison. I went to pick up a friend, and we went to see a movie (the Perks of Being a Wallflower, which was wonderful and I totally recommend it.) I made it through the movie and drove back to his place to meet up with his roommate. I reheated my chili and made some brown rice. We enjoyed dinner then retired to the living room where we gained our fourth, then played board games ’til 11 pm.

What’s so spectacular about this day? (No, not that it was Christmas. Bah humbug!) What’s amazing and new is that I made it through the entire day. The gluten free diet gave me energy to not only stay awake throughout the day, but to get through a day chock full of activity and socializing. That doesn’t seem special to you? Let me explain.

Before I gave up gluten the idea of getting through a day without being fatigued to the bone was a fantasy. In my first post is a laundry list of the symptoms I’ve experienced while on gluten but the most serious, the most bothersome, the one I was most desperate to fix, was the fatigue. This wasn’t “oh I’m tired” or “I could use a nap.” No, this was “I need to sit down or lay down right now because I am going to fall asleep within a minute whether I want to or not.” And that is incredibly scary.

Two weeks ago a normal breakfast would be a bowl of old-fashioned oatmeal with a diced fresh apple, ground flax, and a little bit of cinnamon mixed in (by all accounts a decent, wholesome breakfast!) But within an hour I literally could not stay awake no matter what I did, and I’d pass out for anywhere from 1 to 3 hours. After eating a (natural) peanut butter and (Polaner all-fruit) preserves sandwich with soy milk for lunch I’d be comatose within an hour despite the amount of protein and whole grain fiber in that meal. And so on. No matter how much sleep I got the night before, I’d “nap” [involuntarily] throughout the day.

I’ve been shopping in Target where I’ve had to park my shopping cart, sit in their cafe with my head on my arm, and sleep for upwards of 45 minutes because I could not stay awake another minute. I’ve had to leave stores and sleep in the parking lot or risk falling down in the aisles. I’ve had to pull over on the side of the road because I could not stay awake for another second. All because of gluten! I complained to every one of my doctors, none of whom had an answer (my symptoms did not fit narcolepsy) and most of them didn’t even have input, which (as you can imagine) was incredibly frustrating!

=I spent most of the last year sleeping my life away, afraid to leave my apartment because I didn’t want to fall asleep while driving. I was terrified, frustrated, angry, and a prisoner in my own home.

I cannot accurately express in words how happy I am to have made it through this day without being tired.

Well, now I’m tired. It is midnight after all, and I’ve had a long day. But you know what? The social interaction wasn’t as exhausting as it used to be (which is promising) and the fact that I wasn’t fatigued is more of a comfort than you can possibly know. The longer I go without gluten, the healthier I seem to get, and today’s success means that, not only am I getting bits of my life back, but that I can get my life back! Gluten free living may be expensive but quality of life is priceless!

Now I’m dedicated 100% to this thing, and I will not be tempted back to sickness by little things like pasta, NY bagels (which I’ll miss), or red velvet cake. Living my life awake, aware, and smiling is far more important.

Here’s to a better tomorrow,

ecidnaC

WP’s inspiration is an appropriate starting point.

I wasn’t quite sure where to start for my first post. When I hit “inspire me” WordPress suggested, “Write about the most precious thing you’ve ever lost.”

You’ve got it.

The most precious thing I’ve ever lost was my mind.

It happened about 8 years ago. (This is a long story so you may want to take a bathroom break or grab a beverage before reading this. Don’t say I didn’t warn you.)

In 2004 I graduated technical school with my AAS in computer networking operations and, 4 days after the ceremony, immediately began work on my BS in computer networking and telecommunications. I worked full time from 9-5, went to class from 6-11, and volunteered my time to Habitat for Humanity as often as possible. I was in the honors program in college, which meant I was taking 2 more classes than other students (18 credits as opposed to the usual 12) and had to keep a higher GPA to stay in it. I was go go go 24/7 and slept maximum 6 hours per night. I was stressed out but for some reason the more I had on my plate the better I seemed to function.

Until I started losing my mind.

A fog rolled in and I could barely think. If you gave me a list of 3 things, I could only remember 1 of them. Once upon a time my friends called me The Walking Thesaurus but suddenly I couldn’t think of simple, common words like “ladder” or “exhausted.” My joints ached all the time. I’d go the wrong way on the L.I.E., driving from work to home instead of going to class, or going from class back to work at 11 pm instead of heading home for the night. Whereas once I could recall every detail of the day I met you (from what you were wearing to what you smelled like and what we talked about) I began to lose huge chunks of my memory. I’m not trying to make light of a horrible disease, but I became like the Alzheimer’s version of myself. I was devastated, confused… and terrified.

I couldn’t concentrate in class at all and I couldn’t take notes because once I started writing the beginning of a sentence I couldn’t remember the end of it. The notes I did take were incomprehensible because they were either the beginning of one sentence and the end of another, or the words would swim in front of my eyes. I went from a 4.0 GPA to withdrawing from all of my classes for fear I’d fail every one of them.

I went to my doctor, listed my symptoms, and gave blood for a CBC. In the follow-up I was told my B12 levels were, and this is an exact quote, “devastatingly low.” My doctor prescribed liquid cyanocobalamin (B12) and told me to self-inject 3 times per week.

Within a month I started to improve. It was wonderful! The fog started to clear and I started to regain the ability to remember. When I went back to my doctor she did the worst thing she would ever do to me: she said “let’s take you off the injections and see how well your body holds on to the B12.” Famous last words. I immediately started to decline again. I complained but when she retested me my level was satisfactory enough to her to keep me off the injections, but I knew how I FELT, and I wasn’t happy.

I still had a month’s worth of syringes and B12 so I started injecting again. It did nothing. I’ve never been the same. I’m about halfway between old me and Alzheimer’s me, and it’s NOT a good place to be. I’m a shadow of who I used to be, and I miss the quick-witted, confident, walking thesaurus I used to be.

Around that same time I lost my ability to donate blood. I started donating whole blood as soon as I was allowed to do so, when I turned 17. I donated as frequently as possible. At one point I started doing apheresis, donating a double bag of platelets because my platelet count was so high. Then my iron levels started to come in low every single time I went to donate, and instead of helping people I was turned away. I knew something was wrong when, despite taking 45mg iron supplements every day and eating all the eggs, red meat, spinach, broccoli, and raisins I could stand for two weeks prior to donation day, I STILL came in more than 1 full point below the minimum required to donate blood. This problem has persisted, and I have not been allowed to donate for over 6 years. I should be in the gallon club, but instead I get sad whenever I see a mailing from the Red Cross about blood shortages, knowing my O+ blood can’t help anyone.

In hindsight this is where I think the gluten allergy REALLY hit me, when my body could no longer tolerate the constant barrage of something it could not digest. At this time I lived mainly on carbohydrates to keep my energy up and fuel my go go go schedule. I really truly ate half a pound of pasta per day for dinner (yes, by myself) so I was basically just mainlining gluten and (apparently) setting myself up for a decade of health issues. At the time I had no idea what wheat gluten was or that I could be allergic to it.

Anyone who doesn’t want to know about my personal reproductive issues may want to skip this paragraph.
Also around that same time it was discovered that I had severe PCOS (polycystic ovary syndrome.) A sonogram was performed and it was decided the multitude of cysts on my ovaries were why I never started to menstruate. I had to be put on hormones to start the process and a separate set of hormones to keep it happening. I have to take them, even now, because without them I won’t menstruate. Ever. (This has been tested. The doc who took me off the B12 injections at one point also took me off the pill, saying I didn’t need the extra hormones. I stopped menstruating for 3 months, then I put my foot down and got a new prescription for them.) Excess testosterone and androgen were blamed for my behavioral changes (severe depression and, oddly, aggression.) PCOS greatly increases my risk of developing type 2 diabetes, but it wasn’t until years later that I was instructed to reduce my carbohydrate intake to reduce the risk of developing diabetes. But with such severe depression, I didn’t care enough about myself to do this. I didn’t know – I couldn’t possibly know – that I was doing so much more damage than I could imagine. What’s worse is that my doctors didn’t catch it or even suggest it as a possibility.

I have a number of other issues, some of which were later attributed to the accident that permanently disabled me (a whole other story) and daily ingestion of pain medication.

These are the long-term conditions resulting from untreated celiac disease*:

• Iron deficiency anemia (CHECK!)
• Folate, potassium, and vitamin B12 deficiencies (CHECK!)
• Infertility, spontaneous miscarriages (I’ve been told it would be difficult if not impossible for me to conceive, so I’ve resigned myself to spinsterhood)
• Intestinal cancers
• Osteoporosis
• Rheumatoid arthritis
• Thyroid problems (x-rays clearly show my thyroid is calcifying)
• Fibromyalgia (my pain doctor has diagnosed me with the beginning stages of fibromyalgia. I told her NO.)
• Type 1 diabetes (I have to go off gluten NOW. I’m at a high risk for diabetes as it is; I do not want it!)

Here is a list of 17 possible symptoms of gluten allergy/intolerance*:

• Abdominal pain and discomfort (check!)
• Anemia and other deficiencies (check! Iron and severe B vitamin deficiencies)
• Constipation or diarrhea (check! This was attributed to daily ingestion of pain medication, but I’ve never been normal in this respect.)
• Delayed puberty and missed menstrual periods (check!)
• Discolored teeth (I’m gonna say check.)
• Distension (maybe?)
• Excessive weight gain  or weight loss (check! I put on 100 lbs. in 2 years. TWO YEARS!)
• Fatigue (check! There are times when I absolutely cannot stay awake, and I’m always tired no matter how much sleep I get.)
• Gas (I admit to belching a lot more than a lady should.)
• Headaches
• Joint or bone pain (CHECK and DOUBLE CHECK! After the accident doctors could never figure out why, despite my quick healing, I continued to be in so much joint, muscle, and bone pain. Maybe, just maybe, going gluten free could reduce my pain and help me get at least some of my life back!)
• Muscle cramps (check! I take muscle relaxers every day and have even built up tolerances to some because of regular use, but I’m still plagued with horrible muscle pain and spasms.)
• Skin rashes, itchiness, blisters, eczema (check! I have NEVER had skin problems, but around this time [2004] I was diagnosed with eczema, though it might be gluten-allergy-related dermatits herpetiformis, which would explain why it doesn’t respond well to eczema medication!
• Sores inside the mouth (I regularly get bumps on my tongue, but I don’t know if they count.)
• Stunted growth in children (Check? My father is 6′ tall. My half-brother is 5’10. My half-sister is 5’8. I never got past 5’4″. It sucks.)
• Tingling or numbness (check! Even with 2 years of chiropractic care, no one has been able to get rid of the tingling in my feet.)
• Vitamin K deficiency (I don’t know; I never noticed this one but I’ll get it checked in my next CBC.)

I have 13 out of these 17 symptoms. THIRTEEN! Everything in bold is what I deal with every day. It has to stop. It’s time for change.

No, it’s way past time for change.

I plan to use this blog as a diary of sorts, where I’ll document changes in health, behavior, and weight, struggles with staying on the path, and products and recipes I’ve tried, liked, and didn’t like.

My greatest hope is that my journey helps you. (My other hope is that I don’t bore you to tears as you read this!)

Here’s to the end of an era, the end of a decade of errors in nutrition and medical care, and the beginning of what I hope will be a new life.

Here’s to a better tomorrow,

Candice

* = both lists are from  “The G-Free Diet: A Gluten Free Survival Guide”