Sunday, May 20, 2007

Confession, part 1

Okay, brace yourself:

There is something wrong with my butt.

I mean, there's something wrong inside my butt, or my gut, I don't know for sure.

I haven't wanted to tell you this for three big reasons, the first of which being: how could you possibly want to know? Then again, this is a tell-all blog. How can I not tell you?

I'm not in any pain, though sometimes there's a slight discomfort. What's most disturbing is what is coming out of me. Don't worry, I'll spare you the gory details,though I will tell you this: it's been happening for two years now. Or possibly more - I've been in denial. Which brings me to reason number two: I'm ashamed to admit I didn't do anything about this sooner. Please don't judge me. First of all, I haven't had dependable health insurance for very long. Nor a supportive partner. Nor the guts to face this on my own. (Oh, ha ha, no pun intended.) The point is, when it comes to medical stuff, I can be kind of a wimp.

My naturopath suggested I may have celiac disease. The digestive tract of a person with celiac disease (aka celiac sprue) is literally beaten up from the inside by gluten, a protein in wheat and several other grains. Therefore, digestion is compromised. This might account for my unmentionable symptoms, my uncommonly low iron stores (for someone who eats as well as I do), and the fact that I'm struggling to get and stay pregnant.

"I thought celiacs were always skinny!" I told my doctor. I've never in my life been skinny.

She wagged her head, emphatically. "Sometimes infertility is the only symptom!"

She (and another doctor I've seen) have run a battery of tests (so far, inconclusively) and prescribed an arsenal of supplements (which I take, conscientiously), and a gluten-free, dairy-free (just in case) diet. Since January, I've avoided the foods that might be causing my troubles, which is quite a few foods, actually, because, if you haven't noticed, wheat and its derivatives are in everything. "Modified food starch" for instance? Wheat. "Natural flavors" too. Even oats are off limits, unless I get them from Ireland, because in this country, oats are contaminated by wheat in the fields and in the mills. Don't even get my started on dairy products!

I've been increasingly vigilant about this, the incentive being: Which do I want more, a bagel? or a baby? Chinese food? -- there's wheat in the soy sauce -- Or maybe a child? Ice cream? Don't even think about it. The result: After two months, my symptoms actually cleared. I felt great, triumphant.

Then, I ate yogurt twice in a day, to see what would happen. Symptoms immediately returned. No more dairy for me. The ship righted itself. I haven't dared test gluten in this way.

My symptom-free period lasted two weeks. Then I went on my honeymoon, got sick from a Costa Rican parasite, recovered, was fine for a couple weeks. But now, and all of this week, to my dismay, I'm pretty much back where I started.

As it turn out, the almond milk I've been pouring over my gluten-free corn flakes had "natural flavors" as an additive. I knew this. At first, I avoided this brand. But somewhere along the line, I've gotten my brands inverted. Could this be the only reason? My naturopath says maybe, but wants me cut out corn and soy also.

Ugh.

Reason number three, next time.

6 comments:

Sam said...

Imitation crab meat-wheat. Many vegetarian frozen foods-wheat. Blue cheese (obviously dairy, but also wheat). Don't forget all the contamination when you eat at restaurants. More and more places offer gluten-free menus and health food stores offer alternatives to things like hamburger buns. Watch out for spices. BTW, I don't have celiac, I was tested and I'm negative but I AM intolerant to wheat. VERY intolerant! I'm still trying to determine if I can do barley, rye and oats. If you have any questions from someone who's been there...samsstories@gmail.com

The Patient Connection said...

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splitpea said...

Wow, that's an awful lot to take on. I don't know about you but when I'm feeling crappy about oh, I don't know, not being able to get pregnant for five years or something like that, all I want to do is eat something comforting. For me these days that means some brown rice pudding made with rice milk. Hence I no longer get much comfort from food! My problem's not Coeliac (as far as I know) but I just wanted to express my solidarity with you on the incredibly boring diet front. And since you asked; "a baby or a bagel?", honestly; I'm not completely resolved about that one yet...

Suzanne said...

Amy,

My friend - I have been reading your blog for over a year now. I know you say that you do not want to go the IVF/IUI route....but after struggling myself - three IVFs later (with one PGD all abnormal and the donor egg talk) my husband and I are the proud parents of a little baby boy. I urge you to rethink your ideas about IVF - after many, many shots in the behind (I saved all the needles and there are HUNDREDS), a difficult pregnancy that required me to sit on said behind for 2 months -- all of that was very hard but it was SOOO much harder getting that negative pregnancy test every single month. I even tested all the way through my pregnancy just to see that positive result - thumbing my nose all the while at those damn tests!

I wish you all the best in your journey and will be checking on you.

Go for it - you WILL never regret it. I cannot begin to describe the kind of love that motherhood brings - like falling in love for the first time but minus the "what if he doesn't love me back" anxiety....

Good luck!

JayB said...

Just a word. Many newly diagnosed Celiacs cannot tolerate dairy. Dairy is processed by the tips of your villi in the small intestine. If you've been eating gluten for a long time...you probably don't -have- tips to process the dairy. It's important to note that dairy itself does not contain gluten (unless it's been added in the manufaturing process) Many Celiacs can reintroduce dairy after their villi heal so it may not always be an issue.

Modified food starch and Natural flavors are not always off limits but you must always check with the manufacturer to be sure what the sources are. In the US & Canada most modified food starch is actually corn...but it might not always be so it always raises a flag. Natural flavors can be from most anything, you just need to know what.

It is also not a good idea to go gluten free before you get a diagnosis from a GI who specializes in celiac. Being GF invalidates the tests available. If you are GF, you won't have the antibodies for the blood screening test and if you are gf for any period of time, your villi may begin to heal and the endoscope won't show the damage.

There are lots of resources for newly diagnosed celiacs and you should look into finding a support group

GIG www.gluten.net
CDF www.celiac.org
CSA www.csaceilacs.org
CCA Celiac.ca

Andrea said...

What an entry to finally delurk for...(hi!)

Please never be embarrassed about butt issues. I have had symptoms of my own for a long time and turned to Dr. Google instead of the real thing. Not smart on my part. Last week I finally had a colonoscopy (at the tender age of 35) and now I know what my problem is and how to deal with it. It's not celiac, but I just wanted to let you know you are not alone with the butt issues! I'm glad you are taking care of yourself.