My Story, Part IX: The Darkest Before the Dawn and This Is What Normal People Feel Like

In late 2009, we found ourselves in Texas. It was an exciting time due to new job prospects for my husband and in 2010, a passion for writing blossomed for me.

Another benefit there was having a housekeeper whom my family loved who came in bi-monthly. For me, that was a huge deal. Remember, I was tired and fatigued all the time, so most things were not done well when it came to having a clean house. I am sure I've been looked upon as lazy, etc., but I remember staring at a pile of whatever and seeing no way to get it done. I think it was part of the brain fog and the malnutrition that I later found out about.

So, things were a bit better on that front, but the physical stuff went on. I was now up to an even higher weight than before. I remember once we moved, I got a new scale, and I cried at what I saw on it, though I had suspected as much after weighing in at least twice a week for the last few years and monitoring the rise. I could have never envisioned being at that weight. It was like a nightmare, and I didn't know how to wake up from it.

I was still napping most days and struggling to get up in the morning. My right eye jumped most days for not reason I could ascertain, and both eyes were terribly dry. I suffered from migraines about once a week. I'd also noticed that my collarbone was sore, and the bones in my legs ached (ouch! No way to find that out like going to get a pedicure with a friend!). Also, I was short of breath and dizzy. Sometimes, I slurred words or had trouble finding the right one. I wondered if people noticed. I was afraid I was dying. Then, one day in April, I had strange pains around my stomach and back that I couldn't identify, and I felt terrible. I went to the doctor immediately, and I hated going to the doctor back then. Remember, I was fat, and the only answers I'd gotten were eat less, exercise more and don't worry so much even though you feel terrible. You're fat. Of course you feel awful!

"A kidney stone... maybe and your b.p. is elevated, so let's get you on something for that." The doctor gave me pain pills and a new b.p. prescription and sent me on my way with a scheduled ultrasound.

Kidney stones made sense to me. After all, my dad had had a few. But after a day or so, nothing happened. I didn't have the awful pain the doctor had predicted. I took my meds, tried to eat well, and found a new doctor after the ultrasound showed no kidney stone.

In July of 2010, the answers started coming to me. I'd been reading up on the various mysterious ailments I had and thought maybe just maybe I'm gluten intolerant or have celiac. By this point, my sister had been diagnosed with M.S... in her early 30s. I wondered what had caused two autoimmune disorders at such a young age or at least what was linked with such a phenomenon. I started reading more.

Gluten? Could it be a problem for me and maybe for others on both sides of my family? I thought about the insatiable sweet tooth some of us have and how fat some of my relatives are on one side. It is well known that that is just the Gay genes. (Gay is my maiden name). Then I read that massive, unexplained weight gain can be caused by GI or CD (abbreviations).

I went to the doctor and demanded a food allergy test.. IgE. It wasn't the best choice, looking back because it doesn't really determine gluten intolerance or CD, but at least it showed that I had some intolerance to wheat and rye. Hmm. Interesting. The doctor did a big panel of blood work and found that my vitamin B level was insanely low as was my vitamin D-- two other red flags for gluten issues... malabsorption. Also, one of the markers for developing anemia was high as was my ANA number (that indicates autoimmune stuff). My liver count was elevated. My glucose was borderline, and cholesterol was too. The list never seemed to end. But the two numbers on the celiac panel (he didn't do the complete one) were fine. No antibodies. I'll get back to how that doesn't mean much one way or the other later...

The doctor said try cutting out gluten. Eat well and exercise. I did. I came back to him a few months later. My B and D took a while to get up and I was megadosing on D with 50000 units a week for several months. The blood sugar got better. My pains subsided, and the liver enzyme numbers were down. Everything looked better. Oh, and I'd also lost fifteen pounds or more by December with really only changing the gluten issue. I didn't exercise for hours a day or cut calories any more than I'd already been trying to do.

Hmm. Interesting. I rocked on like that for a while with my numbers getting better mostly and my energy and thinking much clearer. My bones were no longer sore now that the vitamin B and D were in normal range, and exercise was easier, too. The only problem was, I still let gluten into my diet once in a while. Slow learner? Yes, that's me. :) Oh, and as you probably know, gluten is everywhere! And when you tell people you don't eat it, they look at you like you've grown three heads. Not the easiest thing to jump into fully, especially without a celiac diagnosis and a doctor saying, "if you eat this, you will die of stomach cancer and/or do other terrible damage to yourself. The only cure is not eating gluten."

Then in February of 2011, I started bleeding and wouldn't stop... I know it's not something guys want to read about, but I'm talking menstrual bleeding. After a few days or being afraid to leave my house for fear of flooding in public, I went to the doctor. He put me on low dose metformin after finding out my hormones were all whacked. He said, "you probably have PCOS... irregular periods, secondary infertility, and now this." I went along with the low dosage for a while.

Then I decided to see an endocrinologist. He upped the metformin a bit. Now, by this time, our lives were getting really stressful with some job changes that were looming for my husband. It was for the best, but gluten had come back into my life. I'd lost maybe 21 pounds, but a few came back on. I wasn't strict about the diet anymore, so I was bloated, tired etc.

We ended up back in Alabama in August of last year. I ignored how lousy I felt for a while and was still letting some gluten into my diet. My weight loss had stopped and was starting to come back on. In early November, the doctor upped my metformin dosage, but I knew the main issue was gluten.

This Must Be What Normal People Feel Like

I'd finally had enough of feeling terrible, and giving up wheat in the form of cookies, birthday cake, and more seemed like a little exchange for health.

I looked myself in the mirror this time and developed my mantra on December 10, 2011. "Gluten is poison... for me." And that has worked. I'm getting more done. I don't need daily naps unless I've been really busy or up late. The brain fog has lifted. Writing is easier; working is better. The laundry pile is nothing like it once was. And my weight loss started again as soon as I quit gluten for good.

I am still healing, and I think it will take at least six months to feel 100% (from what others who have been here say), but most days I wake up and think "this is what normal people feel like, and I feel good." Oh, and I don't fight binging or compulsive overeating, or crave food all day. That gnawing feeling in my stomach? It only comes back when I've accidentally gotten some gluten in my system. Otherwise, I feel full, and the whole eating thing is much easier. I never dreamed I could be normal with food, but apparently, I can. Last week when I went to the doctor, she said, "wow. You lost five pounds since I saw you last... and probably more and over the holidays!"

It wasn't tough since I didn't eat wheat in large amounts like I figure many folks do during holidays, especially Christmas.

Yes, gluten is everywhere, and yes, there are moments that it is not easy. When people ask, "can't you just have a little?" it drives me crazy.

I should find out in the next day or so about the celiac panel-- maybe. The gold standard is endoscopy or Enterolab to at least show that you have the genes for this stuff. But even the endoscopy is sometimes negative in an obviously positive person (one who is losing massive weight and has diarrhea and such all the time in the presence of gluten). In some ways, having a definite yes for celiac disease would be a relief. Then I could say to that person who says, "Can't you just eat a little?" that, no, even a little bit damages my intestines, every time. With gluten intolerance, it's a slower death, but I know it's still a premature one. It is death in the midst of life. So, I've realized it doesn't matter what other people think about it. They haven't lived my life. I have, and it's better on this side.

That's my story. I'll add to it as time goes on and I remember details I've left out. It is nice to feel good again, maybe better than I ever have in my life. Oh, and my recent bloodwork? My cholesterol was down 60 points with the HDL in the healthy range. The other numbers were much better, too. No elevated liver enzymes now and no tenderness in that spot (I forgot to mention that before). Gluten really does mess up everything and getting it out of the diet starts reversing the damage.