This post is in response to all of you who have asked me about a gluten-free diet and how it has helped me. Anyone who has been sick for a very long time or has dealt with odd symptoms might want to read this series of posts. I am not a doctor. I do not work in a medical field. This is simply my experience and if it helps one of you, then great.

When I left you last week, I had just been diagnosed with Lupus. Initially, I was glad to have a diagnosis. My Rheumatologist put me on Prednisone and an antimalarial (what they use to treat Lupus) and I felt TONS better. The joint pain subsided which made me feel like a new person but as treatment continued… things were still not right and the disease, whatever it was, morphed into other things.

I had visual migraines (which were painless but involved periods of blindness)
I began to lose my voice.
My teeth began to break for no known reason.
I began to get the classic Lupus rash that everyone talks about.
I had asthma attacks even though I had no history of asthma previously.
Sometimes I would break out with blisters in my throat.
My left tonsil disintegrated. Seriously, it broke apart and vanished.
I got hit with adult acne.
Food got stuck in my throat.
There were days where I’d gain 15 lbs for no reason (overnight).
Men, cover your eyes…menstruation was a nightmare.
My lethargy increased (this took years to get really bad).
Iron levels dropped to 5 (transfusions were mentioned and declined).

Because of these symptoms, I saw many specialists. The Ear, Nose and Throat doc confirmed damage to my vocal chords. The Gastroenterologist said I had a Hiatal Hernia which caused reflux, which in turn damaged my throat and caused asthma like conditions. Because of the reflux, I must be bleeding somewhere internally which caused the low iron levels. Because of the asthma, I saw an allergist who tested me for all sorts of stuff and noted a sensitivity to soy and poultry. In theory, some of this made sense but much of it was just to rule other stuff out. Barium swallows, endoscopies and manometry (sensor put down throat for 24 hrs) all proved that there was no reflux.

In the midst of all of this, my GYN who is pill happy and wants nothing more than to carve out your uterus (no kidding) wanted me to get a hysterectomy. I had ultrasounds to rule out tumors which came back negative but she still wanted me to consider this drastic option. Plus, I do believe she hit on me. Talk about uncomfortable!

The turning point for me, came with the colonoscopy that was ordered by my doc. For those who have never had one, the test is a breeze. Don’t be afraid of it, but the prep work can be a bit of a pain with all that drinking and fasting. Mine was a 4-day fast and although I complained the entire time, by day 4, I was feeling normal. NORMAL. No weirdness. No visual migraines. Energy was good. No rashes. No asthma. The test went well. All was negative but the doc forgot to take a biopsy. Yes. He forgot.

As soon as I could eat, I did and within 3 hours I began to react to my food. That is when it struck me that it HAD to be food related. I went back to my allergist and he suggested I remove gluten for two weeks to see if anything improved. I did as he instructed and by end of that trial, I did notice some improvement so I continued with the gluten-free diet but didn’t consider myself 100 % gluten-free yet as I was still playing around with my food trying to figure out what I could eat.

Gluten is a protein composite found in wheat and grain species. The wheat was easy to avoid but the hidden gluten found in say…soy sauce or cosmetics was a larger issue. Cross contamination was a problem too. I’d order gluten-free pasta off the menu yet the cooks would prepare it in the same water as regular pasta. Hello?? You can’t do that!

I continued with my gluten-free diet for over a year, before my doctor noticed that my iron levels began to improve and my Lupus tests began to come back negative. He asked me what I was doing, so I told him. He then sent me for a Celiac test but you have to be eating gluten for it to be a true test, and I could not tolerate even one bite. I tried, but broke out in blisters down my throat and was out of commission for over a week. So although I do not have a positive result to show for it, I do live as if I have Celiac disease which involves damage to the villi of the small intestine when gluten is consumed. To translate, I was not absorbing nutrients. So all of those iron supplements were not doing a darn thing since I couldn’t absorb it and because my digestion was so off, I was polluted with a capital P.

I still test positive once in a while for Lupus but it’s a very weak positive and might have to do with cross-contamination of food at the time of my blood work, All in all, I am much better and believe wholeheartedly that gluten is the cause.

As long as this post is, I could have easily written ten more pages on the subject. Why? Because it really just skims the surface. I am a forty-something who wants to know exactly what is going on at all times. So many times, “I” had to ask the question. “I” had to suggest a test. So many patients are okay with whatever the doctor tells them but I am not. I want to see the numbers and I want to be told WHY something is being done. Most of my doctors were okay with that and in fact, encouraged it. Some, were not and that’s okay because I have other doctors in the network that I can see instead of them.

Thank you for your comments and concern. I am much, much better and my “off” days don’t come nearly as often now that I am used to eating this way. Stores are carrying gluten-free items and restaurants, for the most part, go out of their way if I make a special request. I find that most people want to accommodate me if they can, so I always ask. It can’t hurt, right? My vocal chords are permanently damaged so I no longer teach, as speaking is tough after a 10 minutes or so but my work accommodated me by changing my job description which I am grateful for.

If you have often wondered if diet could be the cause of your problems, you can always try to go gluten-free for a couple of weeks to see if it makes a difference. If you try it, let me know.

This post is in response to all of you who have asked me about a gluten-free diet and how it has helped me. Anyone who has been sick for a very long time or has dealt with odd symptoms might want to read this series of posts. I am not a doctor. I do not work in a medical field. This is simply my experience and if it helps one of you, then great.

I have been gluten-free for a year now. However, it was three years ago that I first suspected that gluten might be a problem for me. I am a relatively healthy person. I don’t get sick often, but five years ago I didn’t think I was going to make it. Here’s what happened:

I woke up one morning and my left elbow was sore. It was a deep, dull ache. A nagging ache. The kind of ache that over-the-counter meds can’t touch. I let it go for several weeks, but when I began to lose feeling in my left arm and could no longer hold a pencil, I made an appointment to see my doctor. He said it was either carpel tunnel or tennis elbow so he put me in a wrist brace and told me to keep an eye on it. Weeks passed, and the feeling in my left arm didn’t come back and had traveled down my arm to my hand. I began to drop things and had trouble steering my car with that arm. Back to the doctor I went.

This time, he noticed that I was favoring one foot when I walked. After the exam, and all that poking and prodding, it was determined that I had lost some feeling in my left foot as well. I immediately thought “stroke.” He thought, pinched nerve and sent me on my way. At this point, I didn’t know what to think. I never had these issues before and although I didn’t think my doctor was being aggressive enough, I did think he was listening and he has always been a good listener.

Months later, I returned to the doctor with increased numbness, increased pain and what had started on the left side, was now traveling to the right. It’s hard to imagine having pain AND numbness, but I did. What wasn’t numb, hurt like hell. Not just joints but in-between the joints, too. If you touched my arm, it would hurt. If I sat for too long, it hurt. Shifting my car from Park to Drive, hurt. At this point, my energy was gone. I was lethargic and could not walk from the parking lot to my office. I did. I did walk, but I felt as if I couldn’t and wouldn’t make it if I tried.

The doc tested me for all sorts of things. Lyme disease was one possibility since it all began after a trip to Yosemite. That test was negative. Actually, everything that he tested me for was negative except for inflammation tests (which were elevated).  But what was causing the inflammation? In the mean time, I was just trying to live. Working was difficult because on the outside, I looked healthy, but on the inside I was falling apart. My family and friends were not supportive. There, I said it. When you look well, it’s hard for anyone to understand just how bad off you really are, and then the doctor couldn’t find anything, I think most thought it was just in my head. However, I was convinced that something was seriously wrong.

After more than a year of this, everything continued to get worse and my hair started to fall out in clumps. Additionally, I had small fissures in my bones that were healing on their own, but no one could explain what caused them. I had bone density tests which did not show anything abnormal. That’s when my doctor ran tests to screen for Lupus and other auto-immune diseases because it certainly seemed as if my body was attacking itself.  Lupus is a strange disease. There is no “lupus” test to tell you whether or not you have it. There are tests to show elevated levels of certain things which point to Lupus, but it’s very vague and out of all the tests he ran, some of these came back positive.

So…it was Lupus. Maybe.

[To Be Continued]