NOT-IN-2gluten's Blog

Hello, I am a new member. I have never written anything publicly before, but I want to share my experience on this board because I now know what is wrong with me! Here is my story.

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I haven't felt well for years. (As long as I can remember!) I am early 40's. As a child I had terrible allergies. I would swell up in huge red welts, rashes, asthma attacks, throat closing, all kinds of scary things. I NEVER felt well even as kid, but I was taught to be "tough" and I was, so I rarely complained. I always had a distended stomach even though I was a gymnast.

As an adult, I have been completely exhausted for as long as I can remember. In my 20's and 30's I really loved to drink, but I would get huge red splotches all over my neck and face and people would stare at me. Allergies! I would go for nights without sleeping. I knew the sleeplessness was related to alcohol, but I couldn't understand it. (I drank beer most of the time.) Well it all makes sense now!

Over the years I have repeatedly gained and lost 10-15 pounds. I have always been rather small framed, I am only 5'3" so 15 lbs is a big difference. When I thought I was taking care of myself and eating healthy, I would eat whole wheat bread, oatmeal, bran cereal, bran muffins, licorice as a snack, light beer, you get the picture. Gluten everywhere!

About 6-7 years ago, I had a strange "spell" or illness. For no apparent reason, my sometimes tingly legs got very heavy. So heavy, I couldn't walk. It was VERY SCARY. I couldn't lift my legs to get into our truck. When walking around, stepping onto a curb was huge chore. I felt as though I couldn't control my legs or my muscles. They ached a little, but they just felt HEAVY , like some sort of paralysis. I was so scared and I thought that it was MS. I spent Christmas sitting in a recliner and now my family was worried as well. I went to the doctor, and explained some of my symtoms.

complete exhaustion

pain in my low back (center toward the spine. feels like kidney area. it is deep and hard to pinpoint)

insomnia

heavy legs

poor digestion

depression

headaches

I was sent for a series of tests that I think were related to my kidneys. (had to take the barium and they injected dye) I was basically told they couldn't find anything and it must all be in my head.

I could barely walk and it was obvious, but for some reason the symtoms slowly went away. It took about 6 weeks.

Over the past 6-7 years, I have had the following symptoms

back pain. I seriously thought this was menopause and that my ovaries were drying up. I would tell people this and they thought I was crazy! My kidney area aches terribly!

insomnia

aching feet. so badly that I could barely walk. sharp stabbing pains on the bottom of my feet.

tingling in legs, feet and hands

bloating

headaches

rash on my stomach

constipation (all my life)

mood swings irritablity/depression

nightsweats. I thought this was menopause.

mild stomach aches. NOT severe GI problems that other people mention.

complete exhaustion.

I am so fatigued that getting up in the morning, going to work and making it through the day is a daily challenge, but I am tough so I never call in sick. I have to get up at 5:15 AM and I cannot be late for work. I am often in a fog, can't think, can't focus, forget the names of streets, and places but when I looked a co-working in the eye and called her the wrong name I really began to think I was crazy. I can't focus and have absolutely NO ENERGY!

At my last doctors visit he spent about 4 minutes with me. He flipped through the chart and said,

"well, I thought I had diagnosed you with Fibromyalgia and Raynauds." (Now I realize some of you may have these diseases, but MY doctor basically told me there was nothing he could do. I don't know if there is treatment for this.) I told him I want more specific answers. He told me to go home and google Raynauds and if those were my symptoms, he would give me a prescription. I wanted to scream!

I did google my symptoms and I came up with gluten intolerence/celiac. I began to eat gluten free foods and immediately felt better. It a has been about 6 weeks and I know I have been glutened several times. Sushi is a main indicator for me. The last time I ate sushi I couldn't get my rings on my fingers and I couldn't walk for a week. My feet start to ache immediately. I now know it is the soy sauce as well the immitation crab. (I think this happens with Coca Cola as well)

I have been doing well until yesterday. It was my birthday and I was on a special date with my husband. There were basically no gluten free options on the menu. I was dying to throw caution to the wind and eat the pizza, but my hubby said I was crazy. Why go to such an extreme? Have the mahi mahi tacos and the spinach dip. So I did.

Well that was it. At the end of the meal I walked to the restroom and it was apparent I had been glutened! My feet were aching and the sharp pains in the kidney area started. I was exhausted and wanted to crawl into bed. We had an entire evening planned and I suddenly couldn't wait to get home.

I was so sick by the time I got home I just cried. I never get an afternoon with my husband as we are struggling to keep our business afloat in this economy. The birthday was a disaster, but I now know for sure without being tested that I am gluten intolerant. I don't feel that I need a test to show up on my insurance and I have basically been gluten free for 6 weeks. I can't imagine eating gluten just to take a test and see if it shows up positive. I get too sick. It is not worth it!

When I am gluten free, all of my symptoms disappear. I had forgotten about the rash all over my stomach that wouldn't go away and I haven't had a headache in weeks. No back pain, aching feet are rare, I have energy, I feel well and my mood swings have impoved. I don't care if I never eat in a resaurant again. Although I have no problems with mahi mahi tacos at Baja Fresh and the Protien style burger at In-n-Out. I don't think by any means that I am well. I think am still being glutened occasionally and that I will now pay even more attention to everything I eat. It is definately worth it to spend extra money on gluten free foods to feel well. I checked the one prescription I take and it is gluten free.

I honestly can't believe that NO doctor picked up on any of this! I have also had inferitilty issues and I don't understand why my doctor's were not looking at Celiac Disease. I mean I hadn't been on birth control since I was 32. That means in 10 years, no one considered this diagnosis! What if I could have conceived by being gluten free? Unbelievable!

Lastly, my family thinks I am crazy and that I taking things too far by avoiding a bread crumb. (except for the hubby, he is wonderful) They comment on my anger, but I feel they just don't want to believe that I am actually sick. I am not sure if I should go back to the not-interested doctor to deal with this.

Although completely changing my diet is difficult, it is not impossible. I am willing to change my diet to feel better. Believe me, after being sick and tired for so long, changing my diet seems like and easy adjustment. I am now off to Whole Foods to fill my pantry/freezer with Gluten Free foods!