Tuesday, October 16, 2012

My Gluten Free change

I've been asked questions about when I went gluten free, how the testing was, and whether the diet is horrible and disgusting or painful or difficult. 

I was raised on a farm and for the most part we had a pretty good varied diet.  We only had fast food occasionally.  We didn't eat a lot of processed food (sloppy joes were usually made from scratch, not Manwich; mac and cheese was made with real american cheese and cheddar, not a dehydrated box; white bread was a treat in our house, we had whole wheat bread or processed wheat bread (roman meal) for the majority of the time; my favorite food was beef liver and mushrooms; breakfast was sausage or bacon or scrambled eggs, cold cereal was also rare. 

I went off to college as a shiny eyed 18 year old who had lost weight my last year in high school by diet and exercise.  My first year in college, I gained that weight back (working in the dining hall and catering (with wonderful food) plus odd hours of sleep and college nightlife didn't  help my body). By the next summer I was having some medical issues, and before the start of my sophomore year in college I was diagnosed with an autoimmune disorder (there are hundreds of these). For some reason, my body started to fight itself and this manifested with an autoimmune disease/disorder.  

What is an autoimmune disease/disorder?  My description: An autoimmune disease/illness is when your body has a stressor or trigger and your body starts to fight your body.  This stressor can be anything. Sometimes it can be simply the act of being born, it could be a shift at work that is contrary to what your body's natural needs are, it could be having a very stressful job and not having an outlet, and the like. 

[copied and pasted the following: 

Autoimmune disease: An illness that occurs when the body tissues are attacked by its own immune system. The immune system is a complex organization within the body that is designed normally to "seek and destroy" invaders of the body, including infectious agents. Patients with autoimmune diseases frequently have unusual antibodies circulating in their blood that target their own body tissues.

Autoimmune diseases are more frequent in women than in men. . . . Furthermore, the presence of one autoimmune disease increases the chance for developing another simultaneous autoimmune disease.]

I generally try to stick with Mayo Clinic or Cleveland Clinic webpages, but neither described the generality of autoimmune diseases, so I went to another website where I found the above. Source 
If you are interested in a fairly comprehensive list of various autoimmune diseases,check out this Wikipedia link.   

After my diagnosis, one of my siblings sat me in the college library and retrieved medical books for us to read about my illness. Basically, I was thankful to still be alive and I saw that I would be at risk for other autoimmune disorders. I had lost a drastic amount of weight in the summer months. I had multiple blood transfusions.  My thick hair, which had reached below my shoulder blades, had thinned drastically. I had gone to a salon to have the hair cut, but I couldn't face cutting it off completely.  The stylists there made the 19 year old me feel like such an anomaly, which is just so lovely.  It was amazing how many people came up to me, when I came back to campus how many women said, "Wow, you look GREAT. What diet did you use." It was quite disturbing that even after I said there was no diet and that I was deathly ill over the summer, how many women continued to gush on about the weight loss, even saying, "I wish I could get sick like that".  O__O.  Yes. people actually said this. Yes, repeatedly they would say this.  I truly hope these women have grown over the years and they no longer would say this to anyone. Some of them, I doubt.  

Fast forward six years or so and I started to get a rash on my lower back area. I had literally scratched myself with bruises; eventually, I cut all my fingernails back so I'd not have talons in which to scrap my skin.  I went to the doctor and he prescribed a drug to combat the "itchiness".    

Sometime after marrying in 1999 I noticed I couldn't stomach french fries from the golden arch. I had no problem with the ones from other places. Same doctor said, "don't eat them, they're not good for you". Insert sarcasm-->Wow, what a truly brilliant doctor<   I wasn't trying to eat french fries every day, just occasionally.  My autoimmune care was transferred to another doctor, thanks to health insurance. My new doctor was very nice and continued me on these medications.  The new doctor loved having a patient who educated herself, who took notes in the office, who asked questions. One day I noticed some redness on my sides; I literally had stretch marks appear over night from a medication I was on long term due to this first autoimmune disorder. It would be thirteen years since my original diagnosis before I would be able to go off the medication completely.  In part this was due to a) flareups every time doctors had tried to taper me and b) no other drug being approved by the FDA to assist with my illness. Oh, there were drugs the doctors KNEW would help, but the FDA--for whatever absurd reason-- would not give the okay to be dispensed to people with my exact illness (a handful of these drugs were FDA approved for illnesses quite similar to mine, but not exact to mine). 

Around 2004/2005 one of my siblings finally received answers to plaguing heath issues. After more than ten years (the average in the USA to be diagnosed), she was diagnosed with Celiac.  Around this same time, one of my aunts was diagnosed and another had the DNA test done, but the doctor told her she "couldn't have Celiac since it is a children's illness and adults don't get it" (which is not true).  

What is Celiac disease?  Mayo Clinic has a great description on their website. Here is the primary explanation from that site:  "Celiac (SEE-lee-ak) disease is a digestive condition triggered by consumption of the protein gluten, which is primarily found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. People with celiac disease who eat foods containing gluten experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients" 

What are consequences of Celiac disease? Again, I think the Mayo website is good with this (weg page description here) One of these is:  "Loss of calcium and bone density. With continued loss of fat in the stool, calcium and vitamin D may be lost in excessive amounts. This may result in osteomalacia, a softening of the bone that in children is also known as rickets, and loss of bone density (osteoporosis), a condition that leaves your bones fragile and prone to fracture."

I recalled the information that I had absorbed after my diagnosis in college wherein I was more likely to have another autoimmune disorder/disease.  I asked the specialist if we could do a Celiac test when I would have another procedure and he said yes. As the time got closer, my care was switched to his nurse practitioner.  When I asked her about the Celiac test she said there was "no way"  I could possibly have Celiac.  I said, 'even with risk factors of multiple aunts with a DNA and Celiac diagnosis and even with a sibling having Celiac" and she said something to the effect of, 'correct, there is no way you could have Celiac'.  

I did part of what any person should do, but not all of what a person should do. I went around this medical provider by going to my primary care physician (PCP) who administered the blood test for Celiac. It came back negative.  Not shocking, since I was on immune suppressant drugs for my other illness. I asked the specialist again and was told no again.   [I also have had the allergy test for food allergies and it came back negative in everything, even the "control" which is suppose to cause a problem in everyone.  This is because of the immune suppressant drugs I take.   As a result, I just avoid foods that I don't think agrees with me]. The part that I didn't do was pushing for the biopsy tests that would have shown whether gluten was impacting my digestive system, the esophagus and the small intestine.  

I sulked, I wondered, I pondered and I started experimenting with baking/cooking gluten free. . . thinking, I need to know how to do this for when my sibling comes back to the state.   

Finally the FDA approved a "new" drug for my primary illness. In order to get onto this medication, I had to be off the the medication I'd been taking for almost thirteen years. [While that RX is good generally, my body had started to have issues with it. After seven years or so, I started to have a lot of side effects that 'may occur'; however, the doctors didn't want me off the RX for the good outweighed the bad]. However, before committing to this new drug instantly, we discussed other options with the doctors. They offered a couple of different options on medication. One was a "Class D" drug, meaning that it definitely results in birth defects.  Another was a drug that has "some" success and that is much like the drug I'd already been on for thirteen years.  The last drug was the one Mike and I decided to go with, the one that had been recently approved.  In discussing the care and transfer from one medication to the other,  I told the specialist and NP that I would be doing a very slow taper to try to limit a major flare  of my illness. This is also when I decided to go gluten free full time.  I lost forty pound that summer.  Combined with the new drug and eating gluten free, the painful episodes I use to have were gone. 

After being completely gluten free for three months, I ate pizza when we were out with family. I ate it to be "normal" and to "not cause a scene" or fuss.  I was in agony.  The Mike came up with "is it worth it".  Is eating that gluten product worth the pain and agony for the next week?

Fast forward to today: 
Our house is mostly gluten free. The Mike has some gluten products. I do not allow gluten flour in my house. Any thing I need to bake for a gathering is going to be gluten free. Usually people rave over the fresh taste, the homemade flavor, etc.  I think this is mostly due to the fact that gluten free food is basically preservative free.  Our bread will become moldy if left out, etc.  Take a gluten snack food or sack of bread and you could leave it out for weeks and it will not become moldy! The Mike knows there is no 'double dipping" for mayo or butter or anything if he's already touched something with gluten.  

The years since I have been dedicated gluten free have been a fabulous life.  Three years after telling me that there was no way I could have Celiac disease, my specialist's NP asked me to be tested for Celiac. I asked, quite seriously, if she was going to pay for me to be off work for me to ingest gluten for  multiple weeks and then for more weeks while the gluten is flushed from my system.  The healthcare providers blinked and they were shocked I'd ask such a thing, and then they told me I'd only need to eat gluten for a few days in order to have a valid test.[Most experts agree that you have to have gluten regularly for at least a few weeks for the test to be accurate]. I refused to take the test. I know I'm Celiac--or at least gluten intolerant-- and I refuse to poison my body in order for the healthcare professionals to cover their past ignorance on the matter.  

There are those in the Celiac community who think that no one should ever go on a gluten free diet if they don't have the proper diagnosis.  Sometimes, it's not as simple as obtaining the diagnosis. Those I met at a conference a few years ago had all been lucky enough to be diagnosed within a year or two of having problems.   I, however, am left to wonder if I've been Celiac a very long time (whether it was primary) and whether my autoimmune disorder diagnosed in college was a result of already having an undiagnosed autoimmune, or whether the Celiac is the secondary and the other autoimmune is primary.  I'll never know.  I do know that by eating gluten free, eating a healthy diet, and with exercise and the fabulous drug the FDA finally okayed, my other autoimmune disorder is kept in "remission". 

How has eating Gluten Free/Celiac made a difference for me:  There are so many different symptoms for Celiac in people that it makes diagnosing the illness based on symptoms difficult.  In Europe, doctors often screen for Celiac, in the US  doctors largely ignore Celiac, it is not discussed much in medical school, maybe only a small paragraph or one page in a book, or a blurb in a lecture (per various doctors to whom I have talked).   For me, I no longer am in agony after eating, I no longer have awful pain in my joints. These are the things I primarily notice. The Mike can tell sooner if I have had gluten. I get louder when talking (as if that's even possible!), I get the fog head.  We tend to eat more "pure" food, as I did when I was a kid. Little of our food has preservatives in it. Also, I have found MSG is a migraine trigger for me (I'm one of the few hundred thousand the FDA doesn't believe exists with this phenomenon).

The reality:  At least one out of every one hundred thirty three people  is Celiac.  More may be gluten sensitive, or gluten intolerant, meaning they should abide by and learn to live with a gluten free lifestyle as well. Some people have symptoms and there are a few people who never show Celiac symptoms of any type. They get tested due to low Vitamin D levels, or because a family member was diagnosed. For these people, they'd never know they had an issue with gluten except for some outside force in their lives. Alessio Fasano, MD of the University of Maryland Center for Celiac Research is one of the premier researchers of Celiac.  I had the pleasure of hearing him speak at a conference. 

The sad reality: Many people who do have a Celiac diagnosis refuse to eat completely gluten free. They may not be able to suffer the increased price in food, they may not be able to find gluten free substitutes for pasta, breads, pizza, etc.  Some people may brush off crouton crumbs from their salad, while others can't tolerate and refuse to accept gluten on their food in restaurants.  

Dining out and why it petrifies Celiacs:  It's always *delightful* (note sarcasm) when dining out at a restaurant and ordering a gluten free salad, then having it presented with a giant gluten breadstick across the whole salad. Another favorite is requesting a gluten free hamburger, no bun, and having it served with a bun.  Then sending it back and having it returned within a minute with magically no bun, only to find bread crumbs under the hamburger or around the plate, highlighting that the wait staff or chef only removed the offensive material and tried to re-serve the same contaminated product. Another time we went to a restaurant on a non-busy day.  I asked for a gluten free menu, they had none. The waiter said they don't have anything that is gluten free. I asked, 'Do you add flour to your hamburger, or can I have a hamburger with no bun as that would be gluten free', along with a baked potato and a side salad, no croutons, no dressing.  He came back from talking to the chef and said what I requested was do-able.  Sometimes, it is that the place has no concept of what dining gluten free really means. I realize that maybe their kitchen area wasn't gluten free, that maybe the chef was concerned, but I figure that any time I am not preparing the food myself, I am taking a chance on what I will be served. 

This is why we generally stick to a cooler of packed food for our road trips, or heading to restaurants we know have gluten free menus and these places tend to be a little harder on the wallet.  

Celiac FAQs from the University of Maryland Celiac Center.   

What I've learned:  I have learned to embrace things that are not considered "normal" to mainstream people. I eat exotic foods like Quinoa (keen-wah) grain, bread made from tapioca and brown rice flour, along with fruits and vegetables.  (though I do try to limit the starches/carbs from gluten free flours). I've learned to have fun with my food in preparation and to embrace the fabulous foods I may never have tried otherwise. Finally, I always try to have snacks in my purse, whether it's a Tanka Bar, a Larabar, or a applesauce packet. I know that if I need some food, it's going to be easier to go to what I know is GF than trying to find a GF product available at a convenience mart.

Do you have any questions or comments or concerns, I'll be happy to answer them, or attempt to do so!

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