People with Celiac at Increased Risk of Lymphoma

So, in shockingly unshocking news, people whose immune systems think that their bodies are the enemy are at an increased risk of getting a whole host of unpleasant long term complications.  This, however, is a lot worse than anything I’ve ever been told I was at increased risk for.  This is actually a replication of an earlier study, showing that people with celiac are 5 times more likely to be diagnosed with non-Hodgkin’s lymphoma.  This stydy found that we are 6 times more likely to be diagnosed.  The good news is, if you’re just a stupid hippie pretending to have celiac to justify your eating disorder, you now have one less thing to worry about.  Also, get some damn therapy.  For the sake of us all, go figure out what it is that makes you want to pretend to have such a horrible medical condition when we all know that you dont.  And then go eat a sandwich. Feel free to mock me about how you can now eat bread that doesnt have the density and consistency of a hokey puck, but for the love of all that is good, pure and holy, go eat your damn sandwich!

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Heightened Risk for Lymphomas Found in Celiac Patients

Clinical Oncology News—Columbia Medical Center’s celiac specialists are asking gastroenterologists to screen their patients with celiac disease carefully for lymphoma, after new research showed individuals with the disease have a sixfold increased risk for developing any kind of lymphoma, and even greater odds for developing non-Hodgkin’s lymphoma and chronic lymphocytic leukemia.

“To confirm the association between celiac disease and different lymphoma types, Dr. Green and his colleagues retrospectively analyzed the charts of all patients treated at Columbia University’s Disease Celiac Center between 1981 and 2010. Of the 1,285 adults with biopsy-confirmed celiac disease, 40 also were diagnosed with a lymphoproliferative disorder (LPD).”

Overall, the risk that celiac sufferers will develop any LPD was 6.5 times greater than the general population, according to the study. Their overall risk for non-Hodgkin’s lymphoma was almost four times that of the general population. Experts stress that it is important to keep the LPD risk for celiac sufferers in perspective. Although celiac patients do have increased rates of these cancers, these cancers are still rare.

In 2009, a Swedish study, including more than 60,000 patients with lymphoma, found a fivefold risk for non-Hodgkin’s lymphoma in patients with celiac disease.

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I think I might be pretty

But I’m honestly not sure.

My body and I generally do not get along. When I was 10, I first started to feel what I later learned were the symptoms of celiac sprue. I started going to the bathroom with terrible urgency.  I started to get tired all the time.  I stopped growing. My hair began to thin. Being half Arab and fortunate enough to only have inharited the least pleasant traits from that side of the family (celiac included) the only part of me that continued to develop with any regularity was my butt. By the time I reached high school, I was a 5 foot, 98lb weakling with bald patches. I also had been diagnosed with asthma (actually anaphalactic shock) rhumatoid arthritus (actually just normal joint inflamation) and a whole host of other medical conditions that did not really exist. Nobody bothered to diagnose the decimated thyroid that kept me in bed up to 20 hours a day.  Nobody bothered to notice that I broke bones and tore skin every time I tripped or stubbed a toe.

In college, I tried so very hard to take control of my health.  My parents had taken me to so, so many doctors while I lived at home and I had had so many blood tests ordered.  Each new doctor would act absolutely shocked when my ANA, the test for lupus, came back negative.  Some then decided that I really did have lupus even though I obviously didn’t.  Some would reinforce that I really did have rheumatoid arthritis, even though the test for that regularly came back negative other than a vague positive result of inflammation “somewhere” in my body.  Others diagnosed me with fibromyalga and threw opiates at me.   Some didn’t bother to hide their opinion behind politically correct terminology and told me with a straight face that they thought I had hysteria.  Obviously, these doctors were all idiots.  So, finally free of the pathetic medical community of that town, I started to visit every specialist who would see me at my new university’s hospital.

The problem with that was, every doctor wanted me to have whatever particular aliment her/his research was currently centered on.  I was diagnosed with everything from familial Mediterranean fever to eating disorders.  But, they gave me medicine other than painkillers, and that seemed to help.  The thing is, a lot of what I was given were various forms of steroids and speed.  Depending on the steroid:speed ratio I was given any particular week, my weight fluctuated from around 95 to 130 lbs.  When I was receiving steroid injections, I’d gain up to 7lbs in a single week.  My face never looked the same one month to the next.  One week it would be thin and angular.  The bones in my cheeks and forehead would stick out prominently.  A few weeks later, my face would be completely round.  There were so many different faces of myself each time I looked in the mirror, and I hated each and every one of them.  I hated not knowing what I would look like from one day to the next.  I hated having to own pants ranging from size 2 to 10 and not being able to plan outfits in advance because I never knew what would fit.  I hated my body and I hated trying to joke about it to all the people who paid me such high compliments when my bones poked through only to turn around and disappointedly ask me what had happened a few weeks later when I was back in moon-face mode. I hated the uncontrollable anger that came with some of the medications I was on, and the manic fits that came with some of the other medications.  I hated not having control over my emotions as well as my body.  And through it all, my hair kept thinning, my bones kept cracking and my skin kept tearing.  I dyed my hair. I put makeup on my scalp to camouflage the bald patches. I dressed goth, punk, preppy and cutesy all to try to feel some sort of connection to the body I was in.  Eventually, I found religion.  I made peace with hating the way I looked by treating my body as nothing more than a vessel to get me through this life.  That helped.  I was able to distance myself from the pain and to distance myself from the way I looked.

I went forward.  I got a masters degree.  I got into a doctoral program.  I met the man I eventually married.  Life continued and my body no longer mattered.  It still hurt and I was always, always tired, but those were facts that I had come to accept.  I put foundation on over my acne scars and wore eyeliner on special occasions.  After becoming religious, I began to cover my hair.  While I did lose a job and some friends over that decision, it actually was a huge relief to no longer be getting suggestions from literal strangers on the street about how to improve my hair, or comments like “oh you’re so pretty, but your hair is disgusting!”  My looks no longer mattered to me the way that they had before.  I knew I wasn’t pretty, but that was ok.  I was smart.  I was involved in several charity organizations.  I had found the area I wanted to focus my research on.  My life had a purpose.  I moved, and I did not pack my scale.  I mixed up all my pairs of pants, and just tried different pairs on in the morning until I found one that fit comfortably.  I was content.

Four years ago, just before I started my doctoral program, I went to visit my father and he took me to see the doctor who diagnosed me with celiac sprue.  After three days on a gluten free diet, I was able to get out of bed without first waking up a half hour earlier than I needed to be up so that I could take opiate pain killers.  I woke up, and I stretched.  I stretched out my legs, and they fully extended.  I sat in bed and sobbed.  It blew my mind not only that I could move, but that I could move easily and without pain.  I started to gain weight for the first time in my life.  It was real, healthy weight, not something artificially induced by steroids.  I started to work out, marveling at what my body could now do.  I grew breasts. It was incredible.

I gained the minimal 20lbs the doctor had told me I needed.  I looked amazing.  Then I gained 10 more.  For the first time in my life, I started to seriously diet.  I gained 10 more.  Then I passed out while driving on the highway one day and was hit by a semi.  While I was in the hospital nursing my broken pelvis, pubic bone, vertebrae, ribs and cheek bone, my torn liver and spleen and my bruised lungs and eyeballs, the doctors discovered that my thyroid had pretty much died, which apparently is incredibly common in people with celiac.  I got on synthroid (synthetic thyroid hormones) and the weight started to pour off me.  My eyebrow was reattached by a phenomenal plastic surgeon.  I went to physical therapy.  My face was monitored by that same amazing plastic surgeon, but remarkably eventually healed on its own.  A few months later, once I was off the walker and the last of the blood red had faded from my eyeballs, I looked great.

I’ve learned to love my body and to try my hardest to take care of it.  I work out on a strict 4 day schedule.  Day 1, I tone my lower body with Pilates.  The exercises are gentle enough that even my stiff pelvis can handle it and they’re shockingly effective.  Day 2, I tone my upper body with weights.  Day 3, I do cardio, usually to a kickboxing dvd.  Day 4, I rest.  There is still cellulite on my thighs and my butt is still disproportionately large.  My upper arms still jiggle if I wave too enthusiastically.  But there is shape and definition to my abs.  There is more lift in my breasts.  And I have so, so much more energy.  I feel better than I ever have, and I actually like what I see when I look in the mirror.

I also weigh 150lbs, and I don’t know how to feel about that.  I am a size 6, size 1 with vanity sizing.  I know I look great.  I know that I have gained both bone and muscle density.  I know that muscle weighs more than fat.    My husband compliments me daily on how good I look.  I know that I look better than I ever have in my life.  But…my scale says I am overweight, and I don’t know how to get past that.  What I see in the mirror doesn’t line up with what I see on the scale.  For most of my life I’ve been told by doctors to gain weight.  Then I was told by society to lose weight.  Despite that, I had no idea how firmly my body image is tied to numbers on a scale.  I really do think that I’m pretty now.  But that damn scale makes me wonder.  So, I’m just not sure.

 

 

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Myths about Celiac Disease

Coeliac UK has a great post up listing some common myths about celiac disease.  I’m thinking the next time I have to go visit relatives, I might just print this out and bring it with me as an explanation for why I have my own container of home cooked food and won’t try “just a taste” of their poison.

It also addresses the myth that it’s “just” a food allergy (because we all know how easily dismissable and TOTALLY not serious those are) and the idea that all celiacs are skinny (Many are not.   RIP, my poor thyroid.  My size 6 jeans and I miss you so!)  and that the primary symptoms are always digestive.    Anyway, check it out, print it out, and forward it to your MIL who thinks the only reason you refuse to eat her cooking  is because you’re a prissy brat.  And check out the rest of their site.  They’ve got some good stuff up there.

 

 

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Effie and the Terrible, Horrible, Not Good, Very Bad Day

I woke up at 5:30am this morning. The joints in my hands, knees and elbows hurt, my chest hurt, I had a fever and I needed to vomit.  Oh goodie…the gluten fairy had apparently struck again.   Luckily, it was Saturday, so I didn’t have to just pop a couple of tylenol 3, chug some pepto bismol and fake my way through a day of work. But even without it being a workday, I still had reports to write, midterms to grade, and lesson plans to…plan.  Plus, every other Saturday I try to bake a loaf of bread to avoid paying approximately $7 a slice if I want some dang toast with my morning coffee. Rather than just take the sensible approach that if I can’t move my fingers on the hand I write with, it doesnt make a lot of sense to try to grade and/or type, I popped a tylenol 3, chugged some pepto bismol and tried to get to work.  And I threw up.  I missed most of the stack of midterms and wiped off the bit that was contaminated (and then rubbed hand sanitizer on it…which while it may not have actually killed my puke germs, made it smell like cucumber melon, which was quite an improvement over the original smell).

After I finished cleaning up my own vomit (which, btw, is the absolute worst part of being an adult) I took another tylenol 3 to replace the one I’d just puked up and then laid back down very still to avoid more projectile vomiting.  I’m not sure why my body does this, but whenever I’m in pain, I puke.  When I had a ruptured ovarian cyst, I vomited over 70 times in 5 hours.  When I was hit by a semi in 2009 and spent almost a month in the hospital, I vomited on literally every single one of the wonderful nurses, physical therapists and aids working there.  The worst part about this -aside from the whole issue of epic nastyness- is that vomiting screws up your electrolytes and having screwed up electrolytes makes you vomit more.  It’s a vicious and thoroughly disgusting cycle that can only be stopped with constantly sipping gatorade and lying very, very still so as not to upset the many angry wasps stinging every part of the inside of my body.

The puke exhaustion eventually knocked me out, and I managed to sleep from about 9am-3pm.  I woke up feeling a lot less awful.  The codeine in the tylenol 3 does a good job of stopping the terrible coughs that I get when I accidentally eat gluten and control some of the worst of the digestive symptoms (one woman’s side effects is another woman’s awesome perk!) and the combination of the two drugs seemed to have minimized the joint pain, fever and overall achenes.  But, the joints on my right hand were still extremely stiff and painful and when I stood up to get out of bed I actually swooned and thought I was going to faint.  I lurched to my laptop and called Husband Man on skype to let him know that he should be taking care of me instead of leaving me to fend for myself while he selfishly sits alone in Saudi Arabia waiting for his visa to come through…and then he asked me the absolutely most incredibly frustrating thing I can be asked when I’m feeling like death:

“How did this happen?”

Um…I accidentally ate gluten.  How the heck else could this have possibly happened?  From him I dont usually get terribly annoyed because I know he’s constantly compiling a list of safe and unsafe restaurants and meals and wants to make sure this doesnt happen again.  But on days when I am sick, and lonely and my house still smells like vomit because of the now stained patch on the carpet that has managed to eat both the carpet cleaner and fabreeze and has apparently used them as fuel for its own growth, I just dont want to deal with being grilled.  Yes, yes, I “cheated” by going to a restaurant with a friend and ordering the one thing I know is gluten free from the menu.   I told the server about my food allergies and took a gluten-ease pill with my first bite of food, but yes, of course it’s my fault that I now feel like garbage.  Of course I know this isn’t what Husband Man means at all, but because I’m feeling miserable and self pitying, I take it that way.

The rest of my day was filled with well-intended condescension from friends ranging from comments like “oh well you don’t have to work today!” to “Do you feel better yet?  You don’t?  Oh dear, I was hoping I was distracting you.”  For the love of all that is good and holy in all of creation both here on Earth and all possible alien life forms, when you know your friend feels like shit, don’t condescend to them!  That’s not going to make things any better!  Deadlines don’t magically move just because I couldnt write for the better part of the day, so please do not tell me that I don’t have to work today.  Yes, theoretically, I probably should be getting some kind of accommodation for my health issues, but a more likely scenario is that I’ll be judged as unable to do my job and then lose it.  Everyone I work with is aware I have celiac, but unfortunately that falls under the category of invisible disabilities, aka, “but you don’t LOOK sick!” This does not exactly get me a lot of understanding when I say things like “I couldnt finish that report by our agreed upon deadline because I was sick last night.”  Reality is that since I spent all day today sick and useless, tomorrow I’m going to have to blow off the friend I promised to help buy a special-occasion dress and just work constantly until 2am or so tomorrow to get everything done.

Oh, and the whole “Are you better yet?” and “I was trying to distract you” crap?  No, of course I’m not freaking better, you jerk.  This is an autoimmune reaction, not freaking pms cramps.  It’s going to take some time to go away.  And seriously, if you’re only talking with me to distract me, then just go away.  I appreciate the good intentions, but I want your friendship, not a distraction.  If I want a distraction, that’s why we have reality tv.  Watching Snookie trying to find The Lost Beach is going to do a much better job of making me forget about the pain than your charity attention.

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Bad Idea

If you ever decide to cheat just a little bit and eat fries from a fast food place where you know there’s no chance they won’t be contaminated, don’t do this the same day that you eat a spicy meal with tons and tons of chilies.  Trust me on this…you want those things to be completely digested before they come racing out of you.

And in completely unrelated news, I’m going to curl up on the couch now with a bottle of Pepto-Bismol.    Should be a fun day.

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How to Scare Your Server

Just assume that no one you talk to knows what gluten is.  Sure, people may have heard of it and know that it’s something their restaurant supposedly has options that are meant to not have it, but I personally have never had the luxury of running into anyone in the food service industry who actually knew that gluten is a protein found in wheat, rye and barley which if consumed by people with gluten intolerance or celiac disease can cause them to have a variety of unpleasant symptoms ranging from anaphylaxes to diarrhea of unbelievable epic proportions.

This is why when I go into any restaurant, even one with a gluten free menu, I make sure to tell the server that I have deadly reactions to wheat and that if there’s even a single bread crumb or tiny bit of flour on my food, there is a very good chance that I will stop berating and die right there in their restaurant.  Then I show them my epi pen to reassure them that I probably wont die, but if my food does end up contaminated, the results will be dramatic.

The whole performance itself is ridiculous, but unfortunately I’ve learned that it’s necessary.  If I just order an item off the gluten free menu without explaining that I’m not some stupid hippy who thinks they should take nutritional advice from a woman who got her start on survivor, I get food that is cross contaminated.  If I get food that is contaminated, I usually don’t realize it until well after I’ve finished eating and I start to have a horrible popping and cramping sensation in my lower abdomen.  This is usually followed by three days to two weeks of unbelievable, explosive diarrhea, ulcers in my mouth, joint swelling, headaches and depression.  None of these things make me very pleasant to work or live with, so when I have to eat out, I make sure to get the point across that if my food has wheat it will be VERY SERIOUS and I will get VERY VERY SICK.

I’d prefer to also throw in the rye and barley issue, but since they seem to be less frequently found on the menus of places I tend to go, I decided a long time ago not to complicate the issue.  Almost every server I’ve met has known what wheat is and was able to help me avoid it.  I have had some sad instances at Turkish and Lebanese restaurants where I  got the servers to tell the kitchen staff not to use bread to remove the meat from their skewers or put bread on the plates, but then the rice we ordered ended up being full of vermicelli noodles.   So I’ve found out the hard way that it’s important to ask specific questions targeting problem foods common to the type of food your restaurant serves.  At a Middle Eastern restaurant, for example, I try to over emphasize the bread issue, but also ask if salads or entrées have burghal (cracked wheat) in them or if there is any vermicelli or other forms of noodles in the food.  At an Asian restaurant, I always ask if gluten-free items are prepared with gluten-free soy sauce.  If so, what brand do they use?  Is it one I personally know to be gluten-free?  If not, I ask to see it and read the ingredients.  What about other sauces that have soy sauce as an ingredient?  If the menu offers items like gluten free sandwiches or pizza, I make sure to ask what precautions are used to prevent cross contamination.  Do they use a separate toaster for the gluten-free vs gluten-containing bread?  What about knives/pizza cutters and cutting boards?  Do the members of the kitchen staff who work with the food change their gloves between working with gluten-free and gluten-containing food?

Above all though, I always, always, ALWAYS make it a point to be as nice as possible to the poor server as I threaten them with the prospect of killing me and attack them with a million questions it probably never even occurred to them to think about before.  It can’t possibly hurt to apologize for being such a bother, thank them for their patience and smile.  Plus, since you are kind of literally putting your life in their hands, it would seem like a no brainer that you wouldn’t want them to hate you.

These things haven’t kept me from getting the odd bit of cross contamination here or there, but they have helped me make dining out a less stressful experience… for me, anyway.  For my server, they are often left terrified that they are accidentally going to lead to my imminent death.  And since so far that’s been pretty well avoided, it’s completely all right with me.

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