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Glutened on Purpose
In order to test for celiac disease, I must eat the very thing that makes me sick to begin with.
Eating at least 3 grams of gluten a day, which equals approximately 3 slices of bread, for at least two weeks, preferably four weeks or longer, as tolerated, is optimal for testing the blood.
It takes several weeks for the body to build anti-bodies against gluten, and possibly longer for those who have been eating a gluten free diet for several years.
I've been gluten free for four years with very few "cheats" or slip ups. I was in denial for the first half year or so, and very strict for three and a half years.
I have, however, been "glutened", or contaminated (exposed) to gluten unwillingly several times and the effects on my health and body have been bad.
My main symptom is the skin problems I have when exposed to gluten. I get raised, itchy bumps that resemble chicken pox in texture and misery.
I also get the digestive discomfort that is common in the gluten-sensitive or intolerant. I never realized I got those symptoms too until more recently. In hind-sight, I know I've always had them, but had a general ill-feeling that I couldn't put my finger on.
The new thing that I have noticed, as I undergo the gluten challenge, is that I have very achy joints and headaches. In short, I feel like I have the flu.
Why, if gluten makes me sick, am I doing the "Gluten Challenge"? Why don't I just continue on with my gluten free lifestyle and feel as good as I've felt for several years?
First, why did I go gluten free in the first place?
In 2009 my mother had been having digestive problems. I suspected gluten intolerance from a description of a co-worker at the time. I asked my mother to keep a food diary and together we determined that she should try gluten free. She did and felt better. I wanted to learn all I could about this disorder and while reading a book about it, I discovered that the skin problem I'd been having could be related. So I went gluten free too. Partly in support of my dear mom, partly in curiosity of my skin disorder getting some relief. My skin cleared up and I never looked back.
Then I discovered that gluten free was less taxing on the thyroid. I'd been suffering from an under-active thyroid for many years. Lo and behold, the gluten free diet relieved some of my thyroid's burden and for the first time in years, my metabolism worked better and I lost weight that I'd been carrying around for a very long time. I'd never felt better!
In October of 2014, I went to my dermatologist for a routine skin cancer screening. She discovered a bump on the nape of my neck in my hairline. It was angry and red; clearly I'd been picking at it. I told her it was an in-grown hair and she said it was not; that she was not comfortable with it and ordered a biopsy. All I could think of was that the convertible I got three and a half years earlier had given me skin cancer in a very unusual place.
The biopsy came back negative for skin cancer but positive for Prurigo Nodularius, which is Latin for "Itchy Bumps". Yes, I had itchy bumps. The very ones that the very same dermatologist had dismissed five years earlier as Foliculitis, a general term for inflamed hair follicles. (Interesting that mine "went away" with a gluten free diet)
Of course I consulted "Dr. Internet" about this diagnosis. To my horror, I discovered that it's not a stand-alone disease. It's an autoimmune disease that manifests through the skin from another autoimmune or metabolic disease. From things as horrible as kidney or liver failure, thyroid disease, diverticulosis, diabetes, celiac disease, intestinal parasites, HIV, and cancer.
Then I contacted my main doctor, an internist, whom I trust fully to investigate my health mysteries. She ordered more blood tests and lab tests than I've ever had!
Everything came back normal except my blood sugar and thyroid were a little elevated. I'd been concerned the most about my kidney function, as I've suffered some bad, unexplained bacterial kidney infections in recent years.
We decided together that I should get tested for celiac disease. Being that my skin problems get worse when I ingest gluten, my thyroid is being regulated with medications, my diverticulosis has not flared since going gluten free and my blood sugar, although high, is still in normal range, we should rule out celiac first.
I left the doctor's office to return back to my office. Like any other time I've been out and need to grab a bite on my way back, I stopped at Taco Time for my favorite gluten free offerings. I pulled into to the parking lot, thinking of what I'd have and a light bulb came on. I was out of prison! I could eat anything I wanted! I knew the first thing i wanted was a croissant. Of I went to a local bakery to get my first gluten-filled treat! One that does not translate in the gluten free world.
It was delicious. Flaky. Tender. Crisp. Delicate. I lingered over it for close to an hour, savoring every delicious, tasty bite. Oh, croissant, how I've missed you!
So by Day 5 of the Gluten Challenge I'd had real pizza, flour tortillas, peanut butter cookie sandwiches, wheat thins, triscuits, sour dough bread, whole wheat rolls, lemon sandwich cookies, bagels, biscuits, pretzels, English muffins, fish 'n chips, clam chowder, egg rolls, won ton soup, gyoza, a fortune cookie, a couple craft beers and more croissants than I've had in ages and I'm so over all the gluten-filled things I've missed so much. There are so many things on my list I want to eat. I'm hoping I feel up to it.
I am sick.
Sick to my stomach. Sick in my joints. Sick on my skin. Sick on my scalp. Sick in my head. (I have a headache, that is. But wait, maybe I'm sick in the head for even doing this!?)
That takes me to another story.
Gluten makes me crazy.
No, seriously. I don't mean the craziness one feels from being physically ill. I'm talking about the psychosis it can evoke.
Gluten poisoning is linked to all kinds of mental and brain chemical dysfunctions: ADHD, insomnia, aspergers, manic-depressive disorder (bi-polar is the "new" term for it, but I prefer the former, or as I like to call it, Crazy Bitch Syndrome).
Looking back, I've done some weird things. Who cleans and polishes the wood cabinets at 3 a.m. because they "can't sleep"? Who goes four days on 2.5 hours of sleep each night and then crashes for 14 hours, for three days in a row? Who thinks it's okay to have a big bottle of wine, a handful of grapes and a slice of cheese for dinner, then paint portraits of their family members to give as gifts? What about all the off-color things I said and did to people I loved? Is it okay to stay up for two days and write a prize-winning short story? (that part was cool). I totally blame riding the Crazy Train on gluten.
I've not done any (very few; let's be realistic, I'm still quirky me!) of those things while living the gluten free life. Be on the lookout for some creative crafts in the next few weeks, and I hope I can write a good story while I'm at it. (I apologize in advance if I text you out of the blue, in the middle of the night)
Despite being sick, I continue to eat the gluten. I wanted to stop yesterday and start healing my gut. Chicken broth and applesauce sounded so good to me. But I heated up the heating pad, took a anti-histamine, clipped my nails to avoid clawing myself, whimpered and went to bed. I got a full twelve hours of sleep and woke up to a real bagel, smeared with cream cheese and enjoyed a BLT with real wheat bread and a side of cream of broccoli soup for lunch.
I'm determined to continue on. Knowing if I have celiac disease is important to me.
I need to know if I can ever eat gluten again without causing irreparable damage and possible cancer to my thyroid, intestines, colon, bowels and skin. I need to know if my immediate family needs to be tested to avoid those things too. You see, celiac disease is hereditary.
I need to know if I can ever dine in a restaurant again. I need to know if I must get a new set of dishes, pans, utensils, toaster, just for me.
Cross-contamination is not an option to celiacs.
I need to know.
So, while I can, while I've been given the license to gluten, I am and I will eat all the things that I've been denied and may be denied for the rest of my life.
I'll savor the texture, the taste, the flavor of every gluten-filled morsel I can get a hold of.
And pray that I'm a "Non-Celiac Gluten Intolerant" person.