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I will never attend another bake sale August 7, 2012

Posted by mareserinitatis in personal, Uncategorized.
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It’s been an exciting couple of weeks for me.

I have had a lot of medical problems…well, most of my life.  It got really bad when I went to college, however, and a year and a half after starting, I found out I had fibromyalgia.  I was 19 at that point…the youngest FMS patient most of my doctors had ever seen.  In an effort to get a hold of my health, I started a restricted carb diet about 3 years after my diagnosis.  Low and behold, I went into remission…something else most doctors had never seen.

About 3 years after that, however, I started having GI issues.  First doctor I went to said I was just constipated and needed to drink more water.  Second doctor thought I had GERD and abdominal tendonitis.  Third doctor told me to take beano when I ate.  As time went on, however, the symptoms got worse, leaving some doctors scratching their heads.  I’ve had tests and ultrasounds on my gall bladder about 4 times, at least 3 cat scans, a multitude of blood panels drawn, 3 or 4 trips to the ER, etc.  The one that really pissed me off was the diagnosis of “anxiety producing IBS”.  The problem with both IBS and fibromyalgia is that there are a lot of doctors who think that this is all in your head.  Problem is, the meds make you feel stupid and careless but don’t do a thing for your GI symptoms.

So I was relieved when I was finally sent to a GI specialist in 2009, about 8 years after my GI symptoms had started.  He did another blood draw and did a breath test, and I was diagnosed with small intestinal bacterial overgrowth.  Like all my other diagnoses, I was better for about a month after beginning the new medication, in this case a super-duper expensive antibiotic.  He also sent me to a pain clinic to load me up with cortizone shots.  They helped…for a while.

After moving back to Fargo, I spent a year and a half trying to get into a GI specialist here.  My regular doc was convinced I just had GERD.  After an abnormal catscan resulted from an ER trip, I finally got in to see him.

This doctor, for a change, has been approaching my issues like a scientist.  Rather than saying, “You’re symptoms are consistent with xxx diagnosis,” he’s actually been going in and *looking* to see what’s inside me.  He’s trying to rule out everything he possibly can.  While I admit I really haven’t been enjoying all the fun dietary gymnastics for these procedures, I finally have an answer.

I probably have celiacs disease.  There’s a good chance this has been my problem all along, maybe even being the cause of my FMS.  (This is apparently a pretty common misdiagnosis.)

The most frustrating part, however, is not that it’s taken this long to figure out what’s going on.  I can understand when so many diseases present so many similar problems that it would be hard to tease out the root of the problem, especially when I didn’t start with GI symptoms.  However, the first GI specialist I saw gave me the blood test for Celiacs, and it showed up negative.  The information on the test specifically states, however:

A negative result (absence of circulating IgA-endomysial antibodies) does not exclude the diagnosis of dermatitis herpetiformis or celiac disease. Patients with mild gluten-sensitive enteropathy may have a negative result.

I am very disappointed that the first GI didn’t follow up further.  Although this has probably been going on for half my life (or more), three less years of problems would’ve been nice.  Also, this led me on years of a wild-goose chase to figure out exactly what the issue was.  I always excluded wheat as a possible factor because I was told the test was negative, leading me to omit from my diet a lot of foods that I probably could and should have been eating.

In the meantime, I have one final test to confirm the diagnosis and then can start on a gluten-free diet.  I honestly don’t anticipate this will be as huge a problem for me as some other people given I’d already spent years watching my carb intake and really enjoy eating veggies.  (I just never thought to cut out gluten entirely.)  However, I do like a treat now and again, so I’ll be on the hunt for some good gluten-free donut recipes…

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Comments»

1. missmse - August 7, 2012

Don’t write off bake sales yet! There’s always rice krispies treats and other gluten-free options are becoming more common.

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mareserinitatis - August 7, 2012

You don’t need to encourage me! 😀

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2. feMOMhist - August 7, 2012

Isn’t there now a super expensive genetic test for celiac? I have family friends where four of the five members have celiac and I swear they finally got the definitive diagnosis that way. Weird thing is it went kid, dad, grandad in order diagnosis. Was the kid’s failure tho thrive that caused docs to keep pursuing dx! So sad that the father and GRANDfather had to suffer YEARS b/c DX wasn’t rigorously sought

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mareserinitatis - August 7, 2012

Actually, in the past year, we’ve been seeing some of the same issues with younger son. In his case, he hadn’t had a false negative, so I was beginning to suspect wheat. He has an appointment soon, and I’m going to get both of the kids tested. (I don’t know that older boy has a problem, but it doesn’t hurt to check.)

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3. karifur - August 7, 2012

You should check out Chocolate Covered Katie – she has lots of simple gluten-free recipes: http://chocolatecoveredkatie.com/
I haven’t actually made any of them yet but every time she posts a new one I say “I could do that!”

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mareserinitatis - August 7, 2012

Are you SURE you could do that? You’ve made your cooking skills rather public. 😉

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mareserinitatis - August 7, 2012

But thanks for the recommendation. I’ll check it out.

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4. nicoleandmaggie - August 7, 2012

I strongly recommend Larabars. My wheat-free 7 months were surprisingly bearable.

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mareserinitatis - August 7, 2012

That’s exactly the kind of thing I need to keep in my bag for emergencies. I’ll have to see if I still have a fructose intolerance, though. (If I do, there’s a good chance it’ll go away once I’ve been on a GF diet for a while.) It appears they really like to use dates in the bars. 🙂

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