Sunday, November 18, 2012

Goodbye Gluten ... We are Never Ever Getting Back Together

After breakfast this morning the sun started to stream into the living room so brightly that I could not see my computer screen to start a blog post... so I did the next best thing... I went out for a run.

The Captain was settled nicely into watching some curling on TV so I got into my gear and when I bent over to lace up my running shoes, I felt a wave of dizziness wash over me.  I have learned not to panic when this happens, but to just allow it to pass... and then afterward, to not push myself too hard physically.  I didn't tell him about it because I know he would have made a fuss about my going out alone... I fell down on the road once a few years ago when a dizzy spell knocked me down and he worries too much at times.  It happens when my head and ears feel inflamed.

Off I went, and I did our usual 5 km loop around the park and along the waterfront that marks our Canadian/U.S. border, and thoroughly enjoyed my lope through the off-leash dog area along the way.  It was not the day to go for broke and I finished in 36.5 minutes which is not too bad... my nose running off my face for the first half and my ears buzzing.  I loved being out in the fresh air and sunshine as it has been a rainy and dismal few days outside here lately.

When I got back I did a nice long stretch while I drank some water and then started making some lunch... the bath could wait!  I needed to eat.

W2 R36.5 @10/1 W4
stretch 10 minutes

So now I am fresh out of the tub... had a nice soak in my homemade Snickerdoodle Bath Salts, and have settled down to make some sense of my health situation.  I am even making myself some talking points so that I make sure to get it all in this one post... If none of these things interest you, you should stop reading now. This post is going to be a place for me to just write things down as a reference.
  • where I am at and how I got to this point
  • what is about to happen
  • how I proceed from here
Immediately after I ran a half marathon on Mother's Day, May 13th this year, I experienced extreme dehydration and salt depletion which led to severe leg cramps for many, many hours... it was about 12 hours before I felt well at all, actually.  My left leg was also swollen from my foot to the thigh and a doctor at the race site told me I should have an ultra sound on it to make sure I had no blood flow issues or clots.  After learning that this swelling had happened to me several times over the past many many years, one leg or both, he agreed not to admit me to the emergency ward for the tests immediately, but admonished me to get them done.

So over the next several weeks I saw my own doctor and I had ultrasound done on both my legs and they were clear of any flow/clot issues. But I did find out that my blood protein was low and that was likely the cause of the edema in my leg... in simplistic terms the low protein makes the blood too thin and it 'leaks' into my flesh.  The swelling comes and goes and sometimes my right leg swells too.

Now we are trying to find out what causes the low blood protein.  Is there a problem with the liver or kidneys, etc.?  The blood tests were repeated to make sure the results were reliable and I had a thorough CT scan of my abdomen from my pelvis to my lungs which showed no irregularities, tumors, etc.  Whew!

During all of this time I was reading books and searching web sites, looking for clues.  I read a book called Wheat Belly, which describes some symptoms I have aside from this 'leg edema/blood protein issue' such as inflammation in my head/dizziness, runny nose, belly bloat, stomach cramps, and so much more.... I talk to my sister-in-law who has been diagnosed severely gluten-intolerant and who has CFS... and she explained to me how I could go about doing some gluten experimenting on my own.

I talked to my doctor who agrees with me that it could be gluten-intolerance causing the low protein in my blood and perhaps even celiac, so he has me go for celiac blood tests, which are inconclusive because my blood protein is too low to give reliable results. Argh.

I gave up gluten.  And over the next couple of months, my head/dizziness cleared up, my runny nose cleared up, my stomach flattened again and the bloating disappeared.  And while I was visiting my older sister at the beginning of September, the leg swelling disappeared... for the first time since May, my leg was not swollen by the end of the day. 

I was a very happy girl.... no more ugly swelling - I could wear all of my shoes again... and I know pretty much for sure that gluten is the culprit.  Happy, HAPPY.

At about that time, I got a phone call from my gastro doc's commander general (that is what I call his office manager cause she runs a tight ship) and she said I was to have a G&E and a celiac biopsy and that I need to be eating gluten again for 2 WHOLE MONTHS before we can do that.  Argh!   I thought long and hard over the next 2 weeks before THAT day came, trying to talk myself out of it.  Did I really need to know if I am celiac?  I have no kids, no offspring to worry about passing that genetic shortcoming... but I do have nieces and nephews and I really suspect my sister and brother have neurological issues that are gluten-related so yes, I guess I should find out. 

So how much gluten do I need to eat?  Could I eat a piece of bread or a cracker every few days? Would that do it?  Nope, I needed to eat the equivalent of 4 slices of bread every day. If I am celiac, and there has been any healing by being off gluten for a couple of months, I needed to eat enough gluten to damage the villi in my small intestine so that the doc can see that damage when he looks at it.

THAT day arrived September 20th... back on gluten.  And within a week my head was stuffed up, my nose was running, my tummy is pooched out and my leg is swelling.... unhappy!  But I perservered and hung on and on November 20th, I am scheduled to have my G&E and celiac biopsy.

I am getting pretty excited about it all.  I don't even mind that the doc is going to put a scope down my throat and look at it and into my stomach and into my small intestine.  I will be sedated and I am so used to the needles and nurses by now that it all seems like old hat to me.  I just want to get it done!

Because, I have plans to NEVER EAT GLUTEN AGAIN... We are NEVER EVER getting back together!

I admit, I have some favorite foods that have gluten in them... I love No-Pudge Brownies and whole grain breads, toasted and slathered with Laughing Cow cheese or butter.  I like pizza and wraps and let's not even talk about cookies and PIE!  I like black licorice and jujubes.

But it is just not worth eating these things if they contribute to my not feeling well, not BEING well.  Even if there is no celiac, there is gluten intolerance.  INTOLERANCE.  Not tolerant. NOT GOOD FOR ME.  That is pretty much it in a gluten-free nutshell.

So this past week I have been eating some of the things I know I am never going to have again.. saying little goodbyes as I go and just like old loves, I might think about them from time to time and reminisce... but I am looking FORWARD to the freedom of being GLUTEN-FREE  4 EVER.



15 comments:

  1. Sounds like you really found out the problem, but it will be interesting to see what the tests say. Don't swear off things so soon - One pizza chain we have here in Ontario does a wonderful gluten free crust and we have enjoyed some lovely gluten free crackers with friends who have celiac. As you're so close to the states, get over there and get their awesome products as well. Good luck on Tuesday.

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    1. Thanks... celiac or not, I know I cannot do gluten anymore. I did have a wonderful gluten free pizza in Vancouver in July and another in Calgary in September so will definitely pursue that avenue! Yes, we are lucky to be close the border. Thanks for the great advice.

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  2. Glad the time is coming and u can get back to feeling good:).

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  3. Welcome to the gluten-free community! My holiday Gfree eBook will be out this week...I hope you'll love it! Xo

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    1. Thanks so much. I will be watching for it!

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  4. Wow! Those are such clear signs... I'm glad you were able to pinpoint that. I've never given up gluten for any length of time, but I have wondered if I would be healthier without it, or if I would see any noticeable difference. Maybe after marathon training I can take a few weeks to experiment.

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  5. That was quite a long road, but sounds like it was all worthwhile. Glad you have it figured out and can now move forward.

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  6. Wow Elle! What an amazing discovery you found to feel better and I gotta say, you are a rock star to get back on the gluten for the test.

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  7. So great that you decided to eat the gluten for the test. Even if you don't have kids, the more you know about your body the easier it is to take care of it. Hope you get some answers soon.

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  8. I am sorry you had to make yourself unwell on purpose, but I do hope it leads to some answers. And your symptoms sound nasty. Who wants dizziness and swelling? I used to get the dizziness, but it was due to very low BP and anemia. Both now fixed, luckily. Most amazing is that you had such a sunny day in November!

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  9. Ugh, I'm sure it's been a miserable two months for you having to eat gluten when you know how poorly it makes you feel. Hugs to you Elle!

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  10. ohhh waves hand in the air, I am so understanding you!! the cutting out eggs and milk has made such a HUGE difference...he said I might need to cut gluten but didn't take that as a you have to and so I think that's probably why i'm still feeling sluggish. Gosh you've convinced me I'm going to get smarter and clear it up!

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  11. Oh wow. I'm so sorry you've been feeling so bad but I'm thrilled you've gotten to the root of the problem. All the best with the testing!

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  12. I've heard wonderful things about that book! My brother in law recommended it to me, but I have yet to actually buy it. So glad you found out the root of your health problems. Hope the medical tests give you some closure.

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  13. I, too had the leg swelling problem a year ago, which also had the doctors worried about a blood clot. Turns out in my case, my body rejects long term sitting! Yup - too much time at the computer for this active person puts my active body into weirdness! So I totally empathize with the swollen leg/ can't wear certain shoes gig. Fortunately my swelling went away and your issues are now identified! May your bloating me done and over with! Good luck with the tests!

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