WARNING: This is an incredibly long post and those of you with ADHD may not be able to read it all. I totally understand, being ADHD myself. This being said, I’ve had a major epiphany this past week, one that has exposed a pride in me I didn’t know I had, and I need to write this all down for me to remember. Whether anyone else reads it or not, I really don’t care. I need to put this down for me to read later. Pam Young says discipline is remembering what you really want. I need this post to help me remember.
Part One: ADHD
Many years ago when I was graduating college 9 years after starting it, my mom told me that she wasn’t surprised. She said that when my younger sister and later brother were diagnosed with ADHD, she looked back on my childhood and figured I had it too, but just not as bad. I thought, ok, I probably have ADD.
Fast forward to 14 years ago when I was 42, juggling a full-time job, 3 kids, a husband in grad school and a mother-in-law who was slowly killing herself with diabetes. I was crashing and burning. I had tried day planners to help with my disorganization and ability to forget important things. I spent hours lying in bed in the dark after shopping because it totally overwhelmed me and I couldn’t stand being touched or talked to afterwards. And I had been passed over for promotions at work more times that I’ll ever care to admit.
I finally read a book called Driven to Distraction by two ADHD doctors. What hit me was the list of things that could look like ADHD – in other words, get yourself diagnosed before thinking you have ADHD. I took the 100 question test in the back of the book – just yes/no questions. If you had 30 or more yeses, they suggested you go get tested. I had 88. I decided that if it was ADHD, I needed help. And if it wasn’t ADHD, I needed to find out what it was and get help.
Long story short, I went, got diagnosed with ADHD, found that Adderall worked for me after a disastrous trial of Ritalin (which worked very well for my younger sister) and got all kinds of counseling over the years to help me manage my ADHD. I also learned that with ADHD comes a lot of other emotional disorders (comorbidity – one of my favorite words), but that I am rare that I don’t have anxiety/depression/OCD or something else along with my ADHD. I’m just ADHD.
This paragraph is a key point: whenever I’ve talked about having ADHD with others, I normally get two types of negative reactions: From people without ADHD: “Oh, everyone feels that way [or I have the same symptoms] and they [I] don’t need meds. You just need to eat better, get more sleep, take these supplements, grow up”. Or they say that ADHD is just a fad diagnosis and that there’s no such thing. From people with ADHD “Oh, please. You only need 10mg of Adderall. That’s candy.” Sometimes I meet people with ADHD who give me positive feedback and encouragement (those are the ones I keep as friends!)
When people tell me they think they might have ADHD, I always tell them to go get tested because it might not be ADHD, it might be depression, anxiety, food allergies, any number of other things listed in that book.
Part Two: Eating and Diet
Over the years, I’ve tried various ways of eating to be more healthy. My favorite was Eat Right 4 Your Type (I’m B+ blood type). I gave up wheat, corn, chicken, tomatoes, oh – a whole lot of things. I’ve never felt better than when I ate that way, but it got too hard to keep it up with a family that had two blood types and with ADHD on top of that, I just gave up.
However, my health got worse and finally, three plus years ago, I decided that I needed to eat better. I had heard about celiac disease and it sounded like what I had. I’ve known for a long time that wheat gives me problems. I thought, as I had when getting diagnosed for ADHD, that if it was celiac, I needed to get help, and if it wasn’t, I needed to find out what it was and get help. I asked to be tested for celiac. The blood test came back negative. So, I decided to do an elimination test myself to see what it was. I went vegan for 6 weeks until I felt better and had no symptoms. Then I added in foods one at a time to see what happened. Sure enough, whenever I ate anything with gluten in it (even if I didn’t know there was gluten in it), I got all the negative symptoms back. So, I started telling people at work that I was gluten-free, but not celiac. Here again, when people tell me they think they might have celiac, I tell them to go get tested, or try the diet for a few months to see if it helps. If it does, great. If not, then go find out what it is that is really hurting them.
About two years ago, I was introduced to low-carb eating, which has helped me in more ways and I lost a lot of weight as well.
And as with discussing ADHD with people, I get similar negative reactions from people because celiac/gluten free eating is now the latest fad, just like ADHD was a few decades ago.
Here’s the thing: up until last week, I’ve been rather annoyed with people who don’t follow the eating regime that they know is better for them – even when I don’t always follow my own. I watched my mother-in-law die at age 69 because she couldn’t/wouldn’t manage her diabetes. But, I do the same thing sometimes. With my ADHD, I don’t always need my meds, so I don’t always take them. I stopped eating low-carb consistently about a year ago, and I’ve gained back most of the weight and have all the other symptoms associated with carb-eating. I’ve tried to go back on it, but it’s hard because carbohydrates are so addicting to me. When I stay away from gluten and carbs, after about two weeks, all the cravings go away and it’s easier. But it’s hard for me to maintain the routine. ADHD helps that problem, but it’s not the whole reason.
Part Three: Epiphany
I now understand more fully how my daughter felt a year ago when she was tested for ADHD and discovered that, though she has some of the symptoms, they weren’t enough to call it ADHD. She does have anxiety, but it felt like a consolation prize diagnosis. (she’s doing fine on her meds now, so she’s feeling better about the whole thing.)
But something happened to me last week that made me realize something.
I am ashamed to admit it but I am going to anyway: I am jealous of those who have celiac.
Because I don’t – at least according to the blood test I took 3 1/2 years ago. But I am gluten intolerant. And I certainly don’t have any of the instant serious symptoms that my celiac friends have. As I have said many times, my celiac friends/family will get sick if you touch wheat and then touch their food. I can lick food off bread and not get sick. It’s just when I eat it that I get the problems.
What happened last week is this: my brother posted on Facebook that he was just diagnosed with celiac. What got me was when he said that he was stunned because food never has made him sick. He’s never had any symptoms that his celiac wife or other gluten intolerant friends/family have had. He just feels tired, run-down and “old”. His vitamin counts are so low, bad cholesterol high, etc., that he’s surprised he hasn’t dropped dead.
The thing is that he posted that the day after I succumbed to my inner child and had a tiny piece of British crumpet with Irish butter at work. I had been handing it out for several days at demo and just couldn’t resist it any more. The sad thing is that I had been low carb for three weeks and had finally gotten over the carb craving that goes with eating higher carbs. But I thought I could take just one bite and then quit. (It didn’t help that I ran out of Adderall the week before and haven’t gotten my prescription renewed)
That set me off. For the next week, I ate some kind of gluten (and all kinds of carbs) every day. I just couldn’t help myself. And yes, I got all the symptoms I get when I eat that way. I got the cramps, the intestinal ‘flu’, the emotional garbage (which doesn’t help with the ‘couldn’t help myself’ part of all of this). Mother’s Day I ate some cheesecake that was heavenly. I kept telling myself that the next day, I would go back to eating how I know is best for me.
It took me a week and enduring several massive sugar headaches and being sick (I may have gotten the flu which has been passed around at work, but I will never know because of the gluten), and being an emotional wreak before I got in control again. (two days and counting as of this morning). I’m doing the Master Cleanse to reset my system, with a low carb meal at night if I feel the need to chew something.
What I’ve learned is this:
I’m addicted to stuff that can seriously mess me up: gluten and carbohydrates (see: sugar and starches).
And I’m tired of having to explain why I’m gluten free to people. Tired of saying “I’m gluten sensitive – the blood test for celiac was negative, but …” instead of saying “I have celiac.” I’m tired of celiac people acting as if I can’t understand what they have to go through because I don’t have what they have. (like the diabetics who come to the store and feel, rightly so, that I can’t truly understand what they’re going through, because even though I’ve discovered that eating low carb is better for me, it’s not the same as having diabetes). I’m tired of feeling like celiac’s poor relations – like my problem isn’t good enough for those with real gluten problems.
I’m tired of my inner child (that adorable part of me that is so fun in so many ways) thinking that because I don’t have celiac that I can “cheat” from time to time and not have serious consequences.
So, yesterday, after feeling sorry for myself without being able to explain why to anyone who asked what I was upset about (because I felt foolish for feeling this way), I looked up the difference between celiac and gluten intolerance.
And this is what I’ve learned:
Celiac is an autoimmune disease where the body reacts to the gluten by attacking the actual lining of your intestines. It doesn’t attack the gluten itself. Gluten sensitivity is when the body attacks the gluten itself by inflammation in the intestines and elsewhere but not the body’s own tissue. And one can develop celiac later in life.
So, even though you get a lot of the same symptoms, it’s different. And one article said that gluten sensitivity/intolerance is at the same point in time as celiac was about 30 years ago. In other words, gluten sensitivity is a real disease but it’s not as understood as celiac right now. Oh, and by the way, celiac can cause brain fog and distractibility.
And both celiac and gluten intolerance are ‘cured’ by a gluten free diet. (duh)
So, just as my daughter can now control her anxiety plus Not-Quite-ADHD by taking meds for anxiety, I need to change my paradigm about my gluten problem. Unless I want to go get a biopsy of my intestines, I won’t know for sure if I have celiac or not – because although I have way more ‘instant’ symptoms than my brother, my blood tests for vitamins, minerals, and cholesterol have always been good. So I probably don’t have celiac. Yet.
But that doesn’t mean that I can cheat. I can’t cheat any more – not with gluten, not with carbs. I don’t like being sick, and feeling old when I try to go upstairs and my hips and knees rebel. I don’t like not sleeping well. I really, really don’t like the severe sugar headaches. And I really don’t like the emotional crap that is running amok in my head. I’m really a happy person. I don’t have clinical depression. But I have gluten/carb depression right now.
I don’t want to kill myself with food.
So, as Pam Young talks about the day in 1977 when she and her sister decided to be organized, I want to talk about May 20, 2013 when I (finally) decided to be gluten-free and low carb.
There. I said it.