Friday, December 3, 2010

Noncompliance or just failure, where are the answers?

Trying to decide if I can classify myself as the noncompliant patient or if I am just failing at my diet. I'm not one to complain, but I've had enough so here goes...

As I have mentioned over the past few months, I've been having a lot of GI issues that continue to get worse and no one knows why. These have actually been going on for years but to a much lesser extent and have gotten worse especially over the past couple months. A few years ago I had the first doctor suggest I had celiac, instead my blood work showed hypothyroid, then again last year my endocrinologist thought I had both celiac and hypothyroid so I attempted a gluten free diet for a few months, but the pregnancy cravings got the best of me I gave in to "real" food again.

Fast forward to this Spring when the abdominal pain, cramping, nausea, bloating, etc returned. Over the Summer and into the Fall it has gotten worse and now add to that extreme physical fatigue and weakness combined with continued weight loss despite extreme hunger and eating like a teenage boy! I am still running what I can and breastfeeding, but I think the 4,000-5,000 calories I am consuming daily are plenty to make up for that. A few weeks ago I was in for my routine endocrinologist appointment and she too suggested celiac, so I followed up with my primary MD who's first thought too was celiac. That was shot down when the blood test was negative to everyone's surprise, although I did my research and found that there is a 20-40% rate of false negatives, almost seems like a pointless test then. We decided anyways to do a gluten free diet trial, that's where the noncompliance or failure comes in. Despite food help for friends, a lot of $ spent on gluten free food, and meal plans I just can't seem to make it the entire day. The pain returns and I just say "forget it" I want something and eat it anyways. The hardest part is breakfast, I am a cereal addict and have yet to find a gluten free cereal that meets my standards.

So here I sit half asleep and exhausted as I eat everything in sight without an answer. Yes I am happy that the pregnancy weight came off so easily, but not that I am now 15+ lbs below pre-pregnancy weight with a BMI of 17 and per my personal trainer 9% body fat, no wonder why I lack energy. The lack of diagnosis is frustrating! Today is the next step a CT scan, I am not looking forward to my berry flavored barium waiting in the fridge, yuck! I guess if it will give me answers and let me function again then I'll suffer through.

4 comments:

  1. What about doing a biopsy? What are they looking for with the CT? I did a complete elimination diet while nursing Jacob and it was horrific, but I did it! Think of how much better you will feel! If you go the biopsy route though, make sure you are still eating wheat or you may get a false negative on that too!

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  2. Sounds like you maybe have some food allergies...I had similar syptoms a few years ago and went and got tested by my naturopath - it involved a strict diet for a bit (I got diagnosed with excess Candida) until down to just a couple of foods I steer clear of - in my case wheat and eggs. Also, it often comes down to being intolerant of foods you actually crave - esp sugar (which is in cereal). Can you go to your doc and get a blood test testing both IgE AND IgG antibodies (IgE will only pick up allergies vs intolerances) against various foods? Otherwise naturopaths use muscle testing or a Vega test (my cynical friend had issues a couple of years ago and ended up doing both the western medicine test and the muscle testing...with the same results for foods to avoid). If there are hypothyroid issues then steer clear of brussel sprouts, cabbage, broccoli and cauliflower - or add in more "seaweed" or iodised products to counteract their goitrogen effect....good luck though, I hope you get to the bottom of it soon....

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  3. Sorry, that must be so frustrating. Especially because your body is burning so much between running and breastfeeding. My neighbor and family are all celiacs and had several failed tests. I don't know too much about all that...but I agree with Cherelli- I've been to a naturopath and they can test for food intolerances. Hope you get your answer soon!

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  4. The biopsy if an option, I have bad reactions to the meds given for the sedation so want to pass on it unless it is a last resort. The elimination diet has been discussed and is an option if we still don't get answers. The CT is basically to "rule out" other problems.

    I might have to check into a naturopath. We are thinking it is likely a food intolerance, just not sure what.

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