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Everything You Ever Wanted To Know About Gluten Intolerance But Were Too Ashamed to Ask, Part Two: Doctors

Filed under: Allergies Food

This is the second post in a series about yours truly going gluten-free. Read the first post here.

Where we last left off, in July 2009, I had completed many weeks of elimination diets (no potential allergens for weeks!) that ended with the realization that avoiding wheat made my gastrointestinal issues lessen noticeably and my acne unexpectedly lighten. *Whew*

Once you figured out you were probably gluten-intolerant, what did you do?
Looking back at those way-frustrating weeks, it was so obvious that the consumption of wheat made me sick, and the avoidance of wheat made me (at least a little) better. So, what did I do? I went back to eating gluten. Obviously.

At the end of those first two gluten-free weeks, I had every intention of strictly keeping up my diet. But then my birthday rolled around (September 5 — write it down, I like whole-leaf teas!), and my parents dropped by with cake among brownie atop cookie from Peacefood Cafe, and I figured a little brownie bite couldn’t hurt, and hey, it would be just plain rude if I didn’t eat a cookie, etcetera.

Over the following week I ate at least a cupcake a day, and, wouldn’t you know it, my stomach went back to the way it was, and my acne returned full-force. I couldn’t believe how quickly things snapped back, like I’d done nothing at all.

After eating through my store of birthday sweets, I got serious again and stuck with the diet through the rest of September, October, November, and December.

How did you replace the gluten in your diet?
I replaced my morning bagel with nothing, by which I mean I didn’t eat breakfast. I ate rice-this and gluten-free-that bready, pasta-y, and pretzel-y substitutes at other mealtimes. I thought that I was already eating lots of fruits and veggies — hey, I’m vegan! — and wanted to replace carbs with carbs, entirely because I liked eating them and not because of health considerations. Though I doubt I’d have admitted that at the time. (Now I eat very differently.)

How’d you feel after three gluten-free months?
In January I felt somewhat better and the acne had lessened, but I wasn’t 100% in any way, and I still had frequent yeast infections. I thought, “Maybe gluten isn’t it after all and I am not eating my happy doughy sesame bagel for no reason.” So I did the logical thing and ate said bagel, kicking off several weeks of eating less bread than I had in the olden days, but more than any (possibly) gluten-intolerant person should ever consume. A few days into that downward spiral, I did what I probably should have done before doing anything else: I went to the doctor and she tested me for celiac disease.

What is celiac disease, and how do you test for it?
Celiac disease, as defined by the Mayo Clinic:

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.

Celiac disease can cause abdominal pain and diarrhea. Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment.

The test my doctor administered is a simple blood analysis that checks for certain antibodies to see if the body is recognizing gluten as a foreign, offensive substance and attacking it. Three days after taking my blood, my doctor called to tell me my results were negative: no celiac disease. But, she said, I might not have been eating enough wheat for a long enough time to get a positive result, if I did indeed have celiac disease. So, she said, eat wheat for three weeks and let’s test again. She also suggested eating more fiber–psyllium husk mixed in water, flax seeds — to help food move through my system faster.

Her instruction gave me the excuse I needed to eat lots of bread. And oh, did I! I also downed lots of fibrous psyllium-water. I felt no less stuffed up, and a lot more bloated over the three weeks after my doctor’s appointment. Then, I went back for the re-test. Negative again.

What could all these stomach issues mean, if they’re not celiac disease?
Since I felt worse, if anything, my doctor sent me to a gastroenterologist, who evidently mistook me for a 50-year-old man at risk for colon cancer or polyps and recommended a colonoscopy. (So, to answer the question: something worse, possibly.) As it turns out, that test is not just for old dudes. It is also for 110-pound, 23-year-old women who have unexplained stomach issues. Who knew. Ready to do anything that might help, I scheduled the appointment for March and kept to my bagel-breakfast diet until the day before the procedure.

What’s it like to prep for a colonscopy?
Let me tell you what this procedure is like, because one day you will need it and you will be so glad not to have been surprised, you’ll be baking me gluten-free cupcakes the rest of your life. And because not everyone has, as I do, parents who are willing to share in gruesome detail their experience of having a bitty camera on a tube stuck up their ass.

As preparation for a colonoscopy, you can’t eat the day preceding, and the night before, you have to drink a lot (maybe a gallon?) of a fluid that tastes like polluted sea water and that sucks all the liquid from your GI track. It tasted so bad that I gagged on it and couldn’t swallow at first. After finally getting some down, it came right back up ten minutes later. I called my mom for a pep talk and then got back down to drinking. The point of this stuff is to clear you out, so be sure to have a bathroom to yourself the night you prep.

A gallon of stuff later and probably five pounds lighter, it was time for the next step, which is taking four doses of a laxative. I took only one, having been advised by my dad, who is literally two and a half times my size, that the suggested dosage made him cramp painfully and pointlessly. I’m not recommending going against the doctor’s orders, though, because the other side of this is that if you’re not fully cleaned out, they send you home and reschedule the procedure, and you do this all over again. Just sayin’, ask your doctor if four pills is really necessary.

What happens during the colonoscopy?
The day of, I walked over to Long Island College Hospital in Cobble Hill, near where I lived at the time, and checked in before hitting the waiting room. They called me and brought me into the procedure room where I suited up in the all-embarrassing gown and laid back on a table on my side. An anesthesiologist popped in and introduced himself, as did the familiar gastroenterologist. They set me up with an IV of a sedative, propofol (you remember — one of the drugs MJ took before he died), and I was out before I could count back from 100 to ninety-something.

I woke up once during the procedure to some discomfort and they upped the drugs quickly till I was out again. (They told me later, while their pants were on fire, that I had not woken up. Waking up during the procedure isn’t supposed to happen, but I wasn’t in any pain when it did.) When I woke for permanent, I was in another room with other sleeping and dazed patients coming out of anesthesia. My doctor soon came by and let me know that everything went fine and he was going to let my designated person come in to see me. (It’s an out-patient procedure, but they require that someone sign you out and leave with you so they can feel like they didn’t send you out into the world all alone, without someone to get you home safely.) Just half an hour later I was allowed to leave. I felt…empty. But otherwise, really, really, hungry. I ate lunch with my friend at Dao Palate and went home to sleep for several hours.

A few days later, the GI doc called with the lab’s results. “Normal! Isn’t that great!” Well, I guess, but that gave me no more information than I had had before. I went back to my regular doctor to get her interpretation. She suggested I might have irritable bowel syndrome (IBS), which, like any syndrome, seems to be a blanket term for a bunch of ailments that are mostly inexplicable. It’s not curable and doesn’t do any actual physiological damage. So I really didn’t want to accept that all my problems could be lumped under this murky disorder.

And then she said the thing that capped off my pursuit of answers from the medical community: “But, you know your body best, and if you don’t feel good when you eat gluten, don’t eat it.” Well, fuck! Thank you and may I please have my $2,000 back? Also my colon tissue?

So I went back to my diet for answers. More on that next time.

6 Comments

  1. Comment by

    Rhea

    on #

    So sorry you went through all that. My test for celiac disease came back negative also but I go by how I feel. Also, gluten sensitivity or intolerance that is not celiac disease won’t show up on the test.

    Thank you for these articles. Looking forward to the next one.

  2. Comment by

    SuryaSmiles

    on #

    All my celiac tests came back negative. I ended up through my ND, having an Alcat Test (www.alcat.com), a blood allergy test. It came back highly allergic to gliadin and the second test a year later, gluten. I’m on GF (also vegan) for 2years. It’s challenging sometimes, as I don’t bake much at all even tho I have a gizillion GFV cooking books!

  3. Comment by

    Martin Matěj

    on #

    Thank you for an interesting info!

  4. Comment by

    Stacy Malinow

    on #

    Please support my petition for the Girl Scouts to sell a gluten free and allergen free cookie. http://www.change.org/petitions/encourage-the-girl-scouts-to-sell-an-allergen-free-cookie

  5. Comment by

    Sue R

    on #

    I had the same issues and was tested for the IgG food intolenance panel. Gluten came up positive as a major irritant, although I dont have Celiac. It’s a simple blood test, some people say it doesn’t prove anything, but it has helped me out a lot. Also- I would recommend seeing a natropathic doctor since I got the run-around for about 10 different doctors about my symptoms. Gluten (and other food) intolerence causes the yeast in your intestines to grow out of control and spread to other areas. I got rid of the gluten and took herbs perscribed by my natropathic doc to rid me of the yeast. Feeling good now. Hope you find what works for you.

  6. Comment by

    Fred

    on #

    Hi Sam:

    Not surprised by your experience. Another example of the clueless nature of mainstream medicine. There is an epidemic of this kind of stuff out there. It’s sometimes referred to as “leaky gut syndrome”. The trick seems to be to get off any foods that are aggravating your body and stay off them. There are some good NYC integrative MD’s that can be helpful in this area. Sad how some people can eat burgers, fries, and guzzle alcohol while more of us trying to eat healthy and be vegetarians or vegan still struggle more.

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