I do hope it passes rather quickly. Meanwhile I'll do my best to avoid most people and hope they somehow fail to notice the glazed look in my eye or the faint rumble of musical delights currently coming from my small intestine.
Showing posts with label Celiac testing. Show all posts
Showing posts with label Celiac testing. Show all posts
Accidental gluten ingestion
Tuesday, February 8, 2011
Well, it seems as though I've experienced my first accidental "glutening". I went to a restaurant (buffet style) and try as I might, I did not succeed in avoiding gluten. I may have been hooped by the salad dressing, or some eejit who put the pasta salad spoon on the greens, but in the end, it got me. The symptoms were very much like "the great cracker incident" where following my inconclusive intestinal biopsy, I got cocky and decided to try eating a cracker just to see what happened. I fondly remember that time as "crackergate". Perhaps "fondly" is too strong a word. I digress. So approximately 24hrs after my meal I began the eye-splitting phase where I succumbed gradually to the effects of a catastrophic migraine. After another few hours the phase involving new and surprising gastrointestinal delights soon followed (in case you are wondering, I am currently donning my 'sarcasm suit'). With that phase seemingly on its way out (frankly, I cannot understand how it could possibly still be happening other that the fact that I am now tapping into my supply of spinal fluid to enable it) I am now firmly ensconced in "the fog". This is the place where I appear to be awake and functioning, but am actually experiencing significant trouble stringing thoughts together and I mostly just appear to those around me to be an ignoramus who simply cannot be bothered to engage in any semblance of meaningful conversation. Frankly, I'm surprised I've even been able to string these sentences together but I think it can only be explained by the singular nature of my focus: I am sitting in a dark room with no noise or any other distractions. Put me in a room with children screaming and running in circles however and you'll quickly see me change into something with the mental capacity of cream cheese.
I do hope it passes rather quickly. Meanwhile I'll do my best to avoid most people and hope they somehow fail to notice the glazed look in my eye or the faint rumble of musical delights currently coming from my small intestine.
I do hope it passes rather quickly. Meanwhile I'll do my best to avoid most people and hope they somehow fail to notice the glazed look in my eye or the faint rumble of musical delights currently coming from my small intestine.
No more gluten or wheat again!
Sunday, November 7, 2010
The decision to give my old pal "wheat" a try (maybe you know him?!) was, at best, ill advised. After suffering waves of nausea, massive gastrointestinal upset (in new and spectacular severities) and a big fat eye-pulsing headache in the 48hrs following my little reunion with my long-lost buddy, I think it is safe to say that we are parting ways permanently now. So long, farewell, auf wiedersehen, goodbye...I'm glad, you're gone, I cannot tell a lie...

No more gluten or wheat again!
Green smoothies...and an update. :)
Friday, November 5, 2010
Lately, I have been obsessed with green smoothies. They are a great way to make breakfast to go, which is fabulous on Fridays, Saturdays and Sundays when I'm with the kids.
Here is one recipe I've been loving lately.
To your blender, add the following:
1/2 lemon (just peel and plop the whole thing in)
2 green apples (cored but certainly not peeled!)
2 TB ground chia and/or hemp seeds
grated ginger (you can keep this in your freezer and grate from frozen- very handy)
3 hand fulls baby spinach
5 romaine leaves
4-5 mint leaves
1/3 cup sunflower sprouts
1/4 pear (just to sweeten in a little)
water, ice (to your liking)
Now for the update...
The boy was tested and revealed no evidence of Celiac. So, the stomach pains and diarrhea that he experiences may just be those rare occasions when someone at school gives him dairy (I've not completely put the hammer down there, so he does get tiny bits now and again). I haven't completely ruled out food intolerances, and I think anyone would benefit from less wheat in their diet, so I will try to work that out, but for the moment, there doesn't seem to be any long-term damage happening. So that is good. On to other news...
I got my biopsy results back- negative. :) This could mean that all the damage has simply healed (which is probably why the gastroenterologist wants to see me again) but it may also mean that I am totally okay for now. So for the moment, I am going to set aside my intense fear of crumbs that I've been sporting for the last year. I even had a cracker last night- an organic wheat one- just to test it out. I had no immediate reactions (I didn't die!!!! ;) but I am feeling increasingly nauseous today. Not sure if they're related. I am going to do another post soon on what all this means, but today, I'm just glad that it doesn't look like my "celiac genes" are active. This is a good thing.
Going to chill out while my kids are sleeping and having "quiet time". :)

Here is one recipe I've been loving lately.
To your blender, add the following:
1/2 lemon (just peel and plop the whole thing in)
2 green apples (cored but certainly not peeled!)
2 TB ground chia and/or hemp seeds
grated ginger (you can keep this in your freezer and grate from frozen- very handy)
3 hand fulls baby spinach
5 romaine leaves
4-5 mint leaves
1/3 cup sunflower sprouts
1/4 pear (just to sweeten in a little)
water, ice (to your liking)
Now for the update...
The boy was tested and revealed no evidence of Celiac. So, the stomach pains and diarrhea that he experiences may just be those rare occasions when someone at school gives him dairy (I've not completely put the hammer down there, so he does get tiny bits now and again). I haven't completely ruled out food intolerances, and I think anyone would benefit from less wheat in their diet, so I will try to work that out, but for the moment, there doesn't seem to be any long-term damage happening. So that is good. On to other news...
I got my biopsy results back- negative. :) This could mean that all the damage has simply healed (which is probably why the gastroenterologist wants to see me again) but it may also mean that I am totally okay for now. So for the moment, I am going to set aside my intense fear of crumbs that I've been sporting for the last year. I even had a cracker last night- an organic wheat one- just to test it out. I had no immediate reactions (I didn't die!!!! ;) but I am feeling increasingly nauseous today. Not sure if they're related. I am going to do another post soon on what all this means, but today, I'm just glad that it doesn't look like my "celiac genes" are active. This is a good thing.
Going to chill out while my kids are sleeping and having "quiet time". :)
Green smoothies...and an update. :)
Surprise! An upper gastrointestinal endoscopy and biopsy!
Thursday, October 21, 2010
Got a call two days ago to take the spot of a cancellation at the gastroenterologist for a small bowel biopsy via an Upper Gastrointestinal (GI) Endoscopy. I've mentioned this before, but let's recap: this is where the doc sticks a long tube down your throat that has a camera, a tissue clipper thing, and an air hose all in it (I think). He or she goes down the esophagus, through the stomach and then into the duodenum which is the beginning of the small intestine to retrieve 3 or 4 biopsy samples. Now, while the idea of the giant tube down my throat did not thrill me, having the final "say" on the matter would be awesome.
So hubby drove me there this morning for my appointment time of 9am. Turns out I was supposed to be there at 8:20. Who knew? Certainly not ME folks...I was never told. In any event, after dealing with the attitude, I got all stripped and gowned, which I'm told is only supposed to be the case when they getcha from the other end, but whatever. So I go without hubby (which was SO not the plan) into this other waiting room with other gown-ees.
A nurse comes in almost immediately to explain the procedure to me. She brings me to her station, and with this little plastic see through doo dad (like a sign with a cross-section of a person and a big hole where she can jam a chain down inside to show you how it happens) she explains the procedure. She tells me that they'll freeze my throat, which may cause me to panic because it feels swollen, but it's not. I'm fine. I just have to remember to breathe. Then when he gets the tube to a certain point, he's going to ask me to swallow it. That's the last time I'm allowed to swallow because if I try to swallow with the tube in there, I'll gag, everything will close up and he won't be able to see. So I'm supposed to just drool all over the place. It's okay. Don't worry about my pride.
Then she tells me that because the stomach (which he has to pass through) is full of ridges and stuff, they are going to inflate it with air so they can get through easily. This means I will probably burp lots. You can see that between the gown and hospital booties, the burping and drooling, I am one HOT mama. So as she's concluding I say "are you going to give me my drugs?" and she looks surprised. She says "well, I'd say 98% of those who have this done don't have sedation because it only takes two minutes." I just have to focus on breathing deeply and it'll be all over in two minutes. I look her square in the face and say "I had natural childbirth, but this thing freaks me out. So I want the drugs." So thankfully without any attitude, she puts a little port in my arm for the doc to put the meds in later.
Just as I'm about to bid her "adieu" I look to the left at the nurses' station where I see no other than my ex boyfriend from one summer between 1st and 2nd year university. That SAME ex boyfriend that my lawyer boss at the time sent a letter to on my behalf asking for him to stop acting crazy and leave me alone or we would file a restraining order on him. Yeah. It was NOT pretty, and just as I'm trying to find my happy place, that's what I see. I lean over and say to the nurse "There's a man over there- please don't turn your head- his name is X, and he and I have a history. I do NOT want him involved in any way." She says "No problem. He won't be."
Anyways, I go back to the waiting room where I am in perfect line of sight for him (stupid place to sit) and now I'm right freakin' out. I am trying to remind myself that I am no longer that scared 18 year old girl and that it's been a long time...chances are he's given his head a shake and no longer tries to restrain his girlfriend from leaving when he's not done arguing, or leaves psychotic messages on her phone. But I'm having a hard time. Finally another nurse comes and takes me to "the room" where I lie down on my left side and she gives me the spray in my throat- twice. I swallow it down and it begins to take effect. All the adrenaline from seeing X and the worry about the procedure has me choking back tears in seconds and the Doc (who's kinda like my dad, with silly jokes and a big warm hand on yours when you're wigging out) comes in and says "Gee, I haven't even done anything to you yet and you're already crying! You REALLY don't like me do you???" then the nurse says "I left her ten seconds ago and she was fine, you walk into the room and look what you did!!" Anyways, about a millisecond later I requested a lot of drugs and he happily obliged. From that point forward, I remember vaguely gagging once, and I remember him pulling the tube out and me being full of spit at that point. That's about it. Get the drugs- don't be a hero. No one wants to remember any of that.
So I met with him after and he had no thoughts re: the outcome. He did mention AGAIN that because I was already on a gluten free diet, one never knows, but hey, it was worth a shot. All I can hope for is I either have THE best looking small intestine on the planet, or it's wrecked beyond recognition. That way, I can be sure one way or the other. If he says it's inconclusive...bah. I'll cross that bridge when I come to it.
So that was my big excitement for the day. Hope everyone is well. Big weekend coming up around here so chances are not great I'll be around, but I'll try.
Ta ta for now.
Kirsten
Surprise! An upper gastrointestinal endoscopy and biopsy!
The next phase
Tuesday, October 5, 2010
So I had my follow up with the gastroenterologist (after a positively miserable weekend) and he would like to do a small-intestine biopsy. Truth be told, the chances of it coming back showing damage are slim to none, but hey, I'm up for giving it a whirl. Apparently I get some good drugs and the day off work while I recover from a very quick, but kind of yucky test, and for what it may answer, I say rave on.
But with our "free" healthcare, that test won't be until next year...
Until then, I'll just keep rocking as I am. Chin up, moving on.
Thanks for listening!
Kirsten

But with our "free" healthcare, that test won't be until next year...
Until then, I'll just keep rocking as I am. Chin up, moving on.
Thanks for listening!
Kirsten
The next phase
I have the genetic marker for Celiac Disease
Friday, October 1, 2010
I received a call a few days ago, and my gastroenterologist shared some information with me that I was both expecting and fearing: I have the DQ2 genetic marker that is associated with 95% of people with Celiac disease. I now know, with 99% certainty, that I have Celiac. You see, I have the genes that predispose me to having Celiac disease, but we don't know at this point if the genes are "on"- for lack of a better description. Kind of like how you might have the gene for breast cancer, but you may never develop it. Well, when you have the DQ2 marker, as I understand it, you have anywhere from a 36%-54% chance of eventually turning "on" those genes due to some stress (emotional or physical) that flips the switch. Then you start to have all the symptoms- like all the ones I've had since I was young, and continue to have when I accidentally ingest something I shouldn't have.
Now, it's really only my true gut feeling (pardon the pun) that leads me to believe that the genes were "on" when I stopped eating gluten. I have a follow up appointment with the gastroenterologist on this issue on Monday, but here's what I think is going to happen.
Doc: You know, we don't really know if you had any reaction to gluten before you stopped eating it.
Me: Yeah, I get that.
Doc: So in my mind, you should be trying to eat it so that we can establish whether or not you have the immune response to gluten. If you don't, you should just eat bread.
Me: Right. That sounds like a real hoot, the whole "eating it and potentially signing up for being ill for weeks on end". Let's do that.
Um, no. Mr. Pick it Up is begging me to give it a whirl so I can know, but it's more than just a blood test. I figure I would have to eat a piece of bread every day for a month, then get the blood test, then continue to eat it while it slowly damages my intestines (intestines, I might add that have had a full year now to repair themselves- I had my first almost-normal iron reading since as long as I've been measuring it!!!) so that I can ultimately have a biopsy where the damage will be visible. Then what? Then I'd go on a gluten free diet for the rest of my life. Oh yeah, I already did that.
I don't know. A very very small piece of me is curious about the 1% possibility, but a few things are holding me back from investigating:
1) I don't know many mommies who can sign up for a self-imposed sick leave.
2) Just this week on Tuesday, I had a gut cramp that was so bad, I thought I would pass out or throw up. I was at work shaking, sweating and in agony. We called the ambulance. It resolved itself but the pain was like going into labour - except from nothing to crowning in ten minutes. They couldn't say what happened, but could it have been gluten? Possibly. I've also been nauseous on and off since then. My house is a bit of a mine field of the kids' and husband's gluten-filled foods...you never know when a few crumbs can do you in. Anyways, it's something I'd rather not repeat, if you know what I'm saying!!!
3) If the chance is approx 30-50% that eventually I will get really sick and need to come off gluten anyway, why would I put myself through that???Again???
If anyone has a good argument one way or the other- please please please speak up. I'm listening.
K

Now, it's really only my true gut feeling (pardon the pun) that leads me to believe that the genes were "on" when I stopped eating gluten. I have a follow up appointment with the gastroenterologist on this issue on Monday, but here's what I think is going to happen.
Doc: You know, we don't really know if you had any reaction to gluten before you stopped eating it.
Me: Yeah, I get that.
Doc: So in my mind, you should be trying to eat it so that we can establish whether or not you have the immune response to gluten. If you don't, you should just eat bread.
Me: Right. That sounds like a real hoot, the whole "eating it and potentially signing up for being ill for weeks on end". Let's do that.
Um, no. Mr. Pick it Up is begging me to give it a whirl so I can know, but it's more than just a blood test. I figure I would have to eat a piece of bread every day for a month, then get the blood test, then continue to eat it while it slowly damages my intestines (intestines, I might add that have had a full year now to repair themselves- I had my first almost-normal iron reading since as long as I've been measuring it!!!) so that I can ultimately have a biopsy where the damage will be visible. Then what? Then I'd go on a gluten free diet for the rest of my life. Oh yeah, I already did that.
I don't know. A very very small piece of me is curious about the 1% possibility, but a few things are holding me back from investigating:
1) I don't know many mommies who can sign up for a self-imposed sick leave.
2) Just this week on Tuesday, I had a gut cramp that was so bad, I thought I would pass out or throw up. I was at work shaking, sweating and in agony. We called the ambulance. It resolved itself but the pain was like going into labour - except from nothing to crowning in ten minutes. They couldn't say what happened, but could it have been gluten? Possibly. I've also been nauseous on and off since then. My house is a bit of a mine field of the kids' and husband's gluten-filled foods...you never know when a few crumbs can do you in. Anyways, it's something I'd rather not repeat, if you know what I'm saying!!!
3) If the chance is approx 30-50% that eventually I will get really sick and need to come off gluten anyway, why would I put myself through that???Again???
If anyone has a good argument one way or the other- please please please speak up. I'm listening.
K
I have the genetic marker for Celiac Disease
Blog post mash-up: genetic tests, vacations and cookbooks.
Tuesday, August 31, 2010
Hey all,
Thanks for hangin' in there through this month. We had a big two week road/cottage trip, and since then it's been just as crazy. We really had fun, saw family and friends and just generally were together. I'm not sure we did much in the way of relaxing, but we did enjoy our time away.
There are a zillion things I could tell you about (including the all-gluten-free bakery and cafe we went to- WHAT A DREAM!) but I'm seriously exhausted. I just wanted to take five minutes to say hello, and thank the faithful that are still stopping by. I am also very excited to say that after over a year of waiting, I think the results of my genetic screen for Celiac are en route. I've said it before, and I'll say it again: if you think you might have a gluten sensitivity, get the stinkin' tests done BEFORE you stop eating gluten. Cuz once it's out of your diet, you no longer have the antibodies to gluten (if you ever had them to begin with!) and at this point, my only option was the genetic screen (at likely a hefty sum - still to be determined) to see if I have the genetic predisposition to developing Celiac. Whew.
So the plan is, once the results are in (DRUMROLL PLEASE!- assuming of course they're negative) I will undergo a VERY strict diet for a week or two, eating nothing out of the ordinary that could produce any gastrointestinal symptoms I might mistake for a reaction. I will eat a few GLORIOUS slices of crusty bread, cross my fingers, and hope for the best. If all goes well for a few weeks, I will do a tiny dance of joy and have a nice glass of beer to celebrate. :) I will never EVER go back to eating the way I did a year ago (enriched wheat flour, etc.) but I will lose that debilitating fear of all potential sources of cross contamination. :) Yippeeee...I'm pretty psyched!
Hope all is well with you guys.
Oh, before I go, I have contributed to a "back to school" e-recipe book with Alisa from One Frugal Foodie. Her recent post about big food business trying to get parents to believe that what they're selling is not only food, but it is a good idea to feed it to their kids. It really rang true for me and I was dying to help out by sharing a few recipes from my blog. I didn't get the chance to come up with anything new for the project, (no time!!), but she was psyched about my sausage recipe and I think she may have used an additional one also...not sure. Whatever she grabbed I was just grateful to help out. I'll let you know once it's ready! Thanks for doing all the work, Alisa. This will certainly help lots of kids- and parents!!
Talk soon,
Kirsten

Thanks for hangin' in there through this month. We had a big two week road/cottage trip, and since then it's been just as crazy. We really had fun, saw family and friends and just generally were together. I'm not sure we did much in the way of relaxing, but we did enjoy our time away.
There are a zillion things I could tell you about (including the all-gluten-free bakery and cafe we went to- WHAT A DREAM!) but I'm seriously exhausted. I just wanted to take five minutes to say hello, and thank the faithful that are still stopping by. I am also very excited to say that after over a year of waiting, I think the results of my genetic screen for Celiac are en route. I've said it before, and I'll say it again: if you think you might have a gluten sensitivity, get the stinkin' tests done BEFORE you stop eating gluten. Cuz once it's out of your diet, you no longer have the antibodies to gluten (if you ever had them to begin with!) and at this point, my only option was the genetic screen (at likely a hefty sum - still to be determined) to see if I have the genetic predisposition to developing Celiac. Whew.
So the plan is, once the results are in (DRUMROLL PLEASE!- assuming of course they're negative) I will undergo a VERY strict diet for a week or two, eating nothing out of the ordinary that could produce any gastrointestinal symptoms I might mistake for a reaction. I will eat a few GLORIOUS slices of crusty bread, cross my fingers, and hope for the best. If all goes well for a few weeks, I will do a tiny dance of joy and have a nice glass of beer to celebrate. :) I will never EVER go back to eating the way I did a year ago (enriched wheat flour, etc.) but I will lose that debilitating fear of all potential sources of cross contamination. :) Yippeeee...I'm pretty psyched!
Hope all is well with you guys.
Oh, before I go, I have contributed to a "back to school" e-recipe book with Alisa from One Frugal Foodie. Her recent post about big food business trying to get parents to believe that what they're selling is not only food, but it is a good idea to feed it to their kids. It really rang true for me and I was dying to help out by sharing a few recipes from my blog. I didn't get the chance to come up with anything new for the project, (no time!!), but she was psyched about my sausage recipe and I think she may have used an additional one also...not sure. Whatever she grabbed I was just grateful to help out. I'll let you know once it's ready! Thanks for doing all the work, Alisa. This will certainly help lots of kids- and parents!!
Talk soon,
Kirsten
Blog post mash-up: genetic tests, vacations and cookbooks.
Update on gastroenterologist
Sunday, April 11, 2010
Got a second call from the gastroenterologist. For those of you who actually pay for your healthcare (my American visitors) it might seem strange (or not at all, I have no idea) that a doctor who does tests on you would not take five seconds to call you back. In my experience, most tell you that you will not hear from them unless there is a problem. Like, taking the 1 minute needed to leave a message and tell someone they're fine is just too much. But this guy called, left a message, then called again. Whether it was because he forgot that he'd already rung me or not, I'm thrilled at the outcome. I was sooo happy to talk to him.
Here's the gist of our conversation:

Here's the gist of our conversation:
- no he doesn't have the genetic test back- could be a month
- my antibody test (IgA) looked normal, but no, he wouldn't know if it had been positive before I stopped eating gluten (he called that "the million dollar question")
- yes, it is possible I have food intolerances, and lots of people with them feel much better on a gluten-free diet
- I can try and eat wheat again, but I should do it gently in case it makes me sick, or I can wait till I have the genetic test back first
- my iron is low AGAIN- ferretin level is 9, though I'm not anemic. When I started my course of shots last time, my ferretin level was 6 (and I wasn't anemic back then either).
Update on gastroenterologist
Still in the dark.
Saturday, April 10, 2010
Got a call from the gastroenterologist. He called me at home during the day (despite having left a message with my new work number) and he told me that it does not appear as though I have any signs of celiac disease. Of course I have questions: are you basing this only on the IgA test? Because I kind of expected that (haven't eaten gluten in about a year- except through crumbs or other contamination). Do you have the genetic panel back? If I don't have the gene, it's a pretty cut-and-dried case. My iron is low- AGAIN- despite being okay a year ago. What does that mean- supplements? Yuck. Iron makes my bad guts worse...more shots? Maybe. Who knows.
So all in all, super frustrated. Worst part? That's it. That's the one thing that conventional medicine seems to be willing to test for. Food allergies? They don't seem very interested in helping with that. Food intolerances? No help at all. What's a girl to do? Nothing apparently. So I'm litterally, after an entire year of avoiding gluten, back to where I was before. Do I have food allergies? Wheat? Corn? Dairy? Is that's what's causing my symptoms? I guess there is only one way to find out, and it's the longest route ever- elimination diet. Go back to litterally eating nothing, then start reintroducing one thing at a time and guaging my reaction. I am SO frustrated, and so tired of not having someone who can stand up and say "Kirsten- this is what you can't eat. It makes you hurt. Don't eat it and you'll be fine." Where is that person? Where is the test? Why is it that medicine has evolved to the point where it is, but no one can tell me why I have wicked pain, and "bad guts" weeks, or months even. When I came back from my sister's place, I was feeling so fantastic, it was ridiculous. But of course life at home is a little different, and certain things crept back into my diet that probably shouldn't have been there. But what are they? I don't want to do this. I don't want to go through this process of elimination. I am still, frankly, terrified to eat wheat. What if he's wrong? What if he gave me that diagnosis only on the basis of the IgA test, and I go ahead and slop down a couple of pieces of toast, and I die for the next week. Sigh.
Maybe I'm just destined to always be "that guy" with the stomach problems. On the up side, I haven't had any dairy except for cream in my coffee for almost two months and my acne (yes, in my 30s and still dealing with pimples) has virtually dissappeared. Yup. A few days ago I ate a piece of chocolate (milk chocolate which I never eat anymore) and for a few days I felt off. Maybe this whole year has been only because of dairy. No...I was still having problems even after I eliminated dairy... I am so SO tired of thinking about this. I want to be one of those people who eats anything. Someone who can go with the flow. Someone who won't be doubled over in pain after just "grabbing a bite" at any old restaurant. I'm tired of eating. I'm tired of eating and worrying about reacting. I'm tired of dealing with the fall-out of eating something my body doesn't like. Right now, there is no joy in food. Today, I don't ever want to eat again. I'm tired. Very very tired.
I've decided to go to the local organic market today. It is catharsis for my soul. I will squeeze and smell the freshness of the produce. I will marvel at the bright colours and hopefully be inspired to eat again. Wish me luck.

So all in all, super frustrated. Worst part? That's it. That's the one thing that conventional medicine seems to be willing to test for. Food allergies? They don't seem very interested in helping with that. Food intolerances? No help at all. What's a girl to do? Nothing apparently. So I'm litterally, after an entire year of avoiding gluten, back to where I was before. Do I have food allergies? Wheat? Corn? Dairy? Is that's what's causing my symptoms? I guess there is only one way to find out, and it's the longest route ever- elimination diet. Go back to litterally eating nothing, then start reintroducing one thing at a time and guaging my reaction. I am SO frustrated, and so tired of not having someone who can stand up and say "Kirsten- this is what you can't eat. It makes you hurt. Don't eat it and you'll be fine." Where is that person? Where is the test? Why is it that medicine has evolved to the point where it is, but no one can tell me why I have wicked pain, and "bad guts" weeks, or months even. When I came back from my sister's place, I was feeling so fantastic, it was ridiculous. But of course life at home is a little different, and certain things crept back into my diet that probably shouldn't have been there. But what are they? I don't want to do this. I don't want to go through this process of elimination. I am still, frankly, terrified to eat wheat. What if he's wrong? What if he gave me that diagnosis only on the basis of the IgA test, and I go ahead and slop down a couple of pieces of toast, and I die for the next week. Sigh.
Maybe I'm just destined to always be "that guy" with the stomach problems. On the up side, I haven't had any dairy except for cream in my coffee for almost two months and my acne (yes, in my 30s and still dealing with pimples) has virtually dissappeared. Yup. A few days ago I ate a piece of chocolate (milk chocolate which I never eat anymore) and for a few days I felt off. Maybe this whole year has been only because of dairy. No...I was still having problems even after I eliminated dairy... I am so SO tired of thinking about this. I want to be one of those people who eats anything. Someone who can go with the flow. Someone who won't be doubled over in pain after just "grabbing a bite" at any old restaurant. I'm tired of eating. I'm tired of eating and worrying about reacting. I'm tired of dealing with the fall-out of eating something my body doesn't like. Right now, there is no joy in food. Today, I don't ever want to eat again. I'm tired. Very very tired.
I've decided to go to the local organic market today. It is catharsis for my soul. I will squeeze and smell the freshness of the produce. I will marvel at the bright colours and hopefully be inspired to eat again. Wish me luck.
Still in the dark.
What to expect at the Gastroenterologist
Saturday, April 3, 2010
As many of you know, after suspecting I had a gluten intolerance I stopped eating gluten-containing foods last spring. We're coming up on a year now since I had a slice of baguette, or a real beer. Sigh. I digress. So I finally made an appointment and saw my family doctor in ...December...yeah, that's right. My family doctor was hesitant to do any testing on his own and instead referred me to a gastroenterologist. My appointment was finally made, and I would have to wait until March 24.
The magic day came (and believe me, this is apparently not a long waiting list in comparison to most- long live "free" healthcare) so I totally prepared myself. I jotted down a history, what I had done since childhood to reduce my stomach pain (a constant in my life) and described the feelings that had intensified in recent years, my severe iron deficiency, etc. He interrupted me and asked if I'd been tested for Celiac; I said "just hang on- I'm getting to that". So I described having seen the naturopath and thinking after my strict elimination diet (which, I've gotta tell you, I'm due for again) that I may also have a gluten intolerance. As soon as I told him I'd gone off gluten, he sighed. This was expected. Let me give you one piece of advice: no matter how much it hurts, have the blood test and biopsy before you stop eating gluten. So he told me there was not that much we could do, given that I'd stopped eating gluten, but I told him I thought I'd probably contaminated my food so many times, there should be some residual tTG, IgA antibodies left- hopefully they'll be high enough to indicate a problem. In addition, I asked him to perform the genetic test for Celiac- just so I could rule it out as a possibility. Not that I still couldn't have an intolerance, but at least I would know that there is likely something else causing me problems- like milk.
I also asked him if he could test me for food allergies to milk, corn, wheat...some of the things I think I've isolated as being reactive to. He said no. He said they don't do that....that maybe I could see an allergist, maybe I could get a skin prick test done...but it wouldn't help me figure out intolerances. I showed him the IgG antibody test I had done. He told me this was not of any value- that the presence of an IgG antibody, did not actually indicate a correlation to any food intolerances. I suspected he would say that. He said "people come in here all the time with stuff like that, and it's meaningless". Well no s*&t Sherlock- if you offer no alternative, when people think they're eating something that makes them sick, they'll look to other methods to discover if it really IS x, y or z that is making them react. What's a girl to do?
I suppose (as much as it pains me to admit it) the only true way to figure out food intolerances is slowly, steadily, one food at a time, in an elimination diet. I have pretty much eliminated corn from my diet but every now and again if I have nachos or just a handful of corn chips, I don't feel well the next day. Do I really need a blood test of some kind to tell me that I'm reacting to corn? Probably not. I went away and had three cheese omelettes in 24 hours. I felt like death for a week. I don't really know if it was the cheese, the eggs or both, but do I now know that I can't eat cheese omelettes? Clearly.
Anyways, I should get my results back soon, come to think of it. The next day though, I actually went and saw "the boy's" doctor to figure out if we need to do anything for him. His doctor asked me what my heritage is- I told him I was 1/2 Scandinavian. He smiled and said "and what do we know about Scandinavians"? Aside from us being tall, blonde and exquisite conversationalists? Dunno. He said 80% of Scandinavian adults are lactose intolerant. Which is kind of funny because apparently some of the countries in that region have the highest dairy use. Hmmm... Anyways, he suggested that we do a generalized blood draw on the boy, as we had never done one, and he would check for some indicator of allergenic activity. If it was positive (or high) it would be worthwhile sending him to an allergist. But I was to wait until my own tests came back, because if I were positive for IgA or Celiac, I should actually do the IgA test as well on the boy. The boy was growing increasingly freaked out at the possibility of a blood draw. That won't be a fun day. But we will wait until I know first.
The plan for the boy involved the use of Lactaid pills for a week (but still no dairy) then the reintroduction of dairy with doses of Lactaid. He is hopeful this will stem the tide of stomach pain complaints from my poor little boy. I hope so too... I also bought the adult version of the enzyme for myself, and have used it a few times when I've had something with dairy. Let's just say, so far I'm not too impressed.
Last night I ate a whack load of those mini eggs from Cadbury at a friend's place. I discovered (after shovelling them in my gob of course) that of course there is milk in them (I only eat dark chocolate which does not have dairy in it now and had forgotten) and that there is some element, though not printed on the package, that is apparently not safe for Celiacs. I don't know this to be 100% accurate, but I was experiencing some wicked gut cramps about an hour after leaving their house so it of course seemed a great time to do a wee Google search and check on the safety of the food I had ALREADY consumed en masse. D'oh.
Okay, that's enough for today! I hope everyone is enjoying a lovely long weekend. It's summer-like here and we're going on a bike ride today.
Keep reading those labels. :)

The magic day came (and believe me, this is apparently not a long waiting list in comparison to most- long live "free" healthcare) so I totally prepared myself. I jotted down a history, what I had done since childhood to reduce my stomach pain (a constant in my life) and described the feelings that had intensified in recent years, my severe iron deficiency, etc. He interrupted me and asked if I'd been tested for Celiac; I said "just hang on- I'm getting to that". So I described having seen the naturopath and thinking after my strict elimination diet (which, I've gotta tell you, I'm due for again) that I may also have a gluten intolerance. As soon as I told him I'd gone off gluten, he sighed. This was expected. Let me give you one piece of advice: no matter how much it hurts, have the blood test and biopsy before you stop eating gluten. So he told me there was not that much we could do, given that I'd stopped eating gluten, but I told him I thought I'd probably contaminated my food so many times, there should be some residual tTG, IgA antibodies left- hopefully they'll be high enough to indicate a problem. In addition, I asked him to perform the genetic test for Celiac- just so I could rule it out as a possibility. Not that I still couldn't have an intolerance, but at least I would know that there is likely something else causing me problems- like milk.
I also asked him if he could test me for food allergies to milk, corn, wheat...some of the things I think I've isolated as being reactive to. He said no. He said they don't do that....that maybe I could see an allergist, maybe I could get a skin prick test done...but it wouldn't help me figure out intolerances. I showed him the IgG antibody test I had done. He told me this was not of any value- that the presence of an IgG antibody, did not actually indicate a correlation to any food intolerances. I suspected he would say that. He said "people come in here all the time with stuff like that, and it's meaningless". Well no s*&t Sherlock- if you offer no alternative, when people think they're eating something that makes them sick, they'll look to other methods to discover if it really IS x, y or z that is making them react. What's a girl to do?
I suppose (as much as it pains me to admit it) the only true way to figure out food intolerances is slowly, steadily, one food at a time, in an elimination diet. I have pretty much eliminated corn from my diet but every now and again if I have nachos or just a handful of corn chips, I don't feel well the next day. Do I really need a blood test of some kind to tell me that I'm reacting to corn? Probably not. I went away and had three cheese omelettes in 24 hours. I felt like death for a week. I don't really know if it was the cheese, the eggs or both, but do I now know that I can't eat cheese omelettes? Clearly.
Anyways, I should get my results back soon, come to think of it. The next day though, I actually went and saw "the boy's" doctor to figure out if we need to do anything for him. His doctor asked me what my heritage is- I told him I was 1/2 Scandinavian. He smiled and said "and what do we know about Scandinavians"? Aside from us being tall, blonde and exquisite conversationalists? Dunno. He said 80% of Scandinavian adults are lactose intolerant. Which is kind of funny because apparently some of the countries in that region have the highest dairy use. Hmmm... Anyways, he suggested that we do a generalized blood draw on the boy, as we had never done one, and he would check for some indicator of allergenic activity. If it was positive (or high) it would be worthwhile sending him to an allergist. But I was to wait until my own tests came back, because if I were positive for IgA or Celiac, I should actually do the IgA test as well on the boy. The boy was growing increasingly freaked out at the possibility of a blood draw. That won't be a fun day. But we will wait until I know first.
The plan for the boy involved the use of Lactaid pills for a week (but still no dairy) then the reintroduction of dairy with doses of Lactaid. He is hopeful this will stem the tide of stomach pain complaints from my poor little boy. I hope so too... I also bought the adult version of the enzyme for myself, and have used it a few times when I've had something with dairy. Let's just say, so far I'm not too impressed.
Last night I ate a whack load of those mini eggs from Cadbury at a friend's place. I discovered (after shovelling them in my gob of course) that of course there is milk in them (I only eat dark chocolate which does not have dairy in it now and had forgotten) and that there is some element, though not printed on the package, that is apparently not safe for Celiacs. I don't know this to be 100% accurate, but I was experiencing some wicked gut cramps about an hour after leaving their house so it of course seemed a great time to do a wee Google search and check on the safety of the food I had ALREADY consumed en masse. D'oh.
Okay, that's enough for today! I hope everyone is enjoying a lovely long weekend. It's summer-like here and we're going on a bike ride today.
Keep reading those labels. :)
What to expect at the Gastroenterologist
Allergy test results
Thursday, March 4, 2010
Okay folks! So, the verdict is in- here is the summary from my allergy tests...
The biggest thing i'm reacting to is soy. :) No surprise there, because I substitute soy for a lot of things. However, my dairy reactions are all low. There are two reasons for this: 1) I hardly ever eat dairy, so I'm not producing antibodies to it, and/or 2) my reaction to dairy is not allergic, but rather a lactose intolerance. So all in all, I am going to work dairy back in- just in cheese though. Obviously having soy cheese is not a good idea right now. I basically have to "give it a rest" on the soy.
The second-biggest thing I'm reacting to is egg. Yup. Egg white AND egg yolk. That's weird. I don't eat a ton of eggs, but the reaction is quite high.
Third-biggest thing I'm reacting to: Gluten. Yup. Now, keep in mind that I have not knowingly eaten gluten for the better part of a year. The test actually states that if you haven't eaten something for "several weeks" you may have no reaction to it. Well, the better part of a year later, with cross-contamination as the only possible source for gluten, and I am STILL reacting to gluten, rye and wheat. Wow! This is crazy.
Next on the list is oysters, which to the best of my knowledge, I've never eaten, so whoop dee do. Don't care.
There are a few other things I have a low reaction to, like almonds, peanuts, kidney beans. This would be the type of situation where I wouldn't eat all those things in the same day. Know what I mean?
I am going to follow up with the naturopath, and I'm going to take these results with me when I go see the gastroenterologist at the end of the month. Really nice to have one piece of the puzzle.
Haven't got "the boy's" yet...but his will be way more interesting because he hasn't avoided any food except straight milk. Funny though, since we've been back from my sister's, I haven't let him have any dairy and he has stopped complaining of stomach pains...except for the one day when he accidentally got a grilled cheese at school...
To be continued.

The biggest thing i'm reacting to is soy. :) No surprise there, because I substitute soy for a lot of things. However, my dairy reactions are all low. There are two reasons for this: 1) I hardly ever eat dairy, so I'm not producing antibodies to it, and/or 2) my reaction to dairy is not allergic, but rather a lactose intolerance. So all in all, I am going to work dairy back in- just in cheese though. Obviously having soy cheese is not a good idea right now. I basically have to "give it a rest" on the soy.
The second-biggest thing I'm reacting to is egg. Yup. Egg white AND egg yolk. That's weird. I don't eat a ton of eggs, but the reaction is quite high.
Third-biggest thing I'm reacting to: Gluten. Yup. Now, keep in mind that I have not knowingly eaten gluten for the better part of a year. The test actually states that if you haven't eaten something for "several weeks" you may have no reaction to it. Well, the better part of a year later, with cross-contamination as the only possible source for gluten, and I am STILL reacting to gluten, rye and wheat. Wow! This is crazy.
Next on the list is oysters, which to the best of my knowledge, I've never eaten, so whoop dee do. Don't care.
There are a few other things I have a low reaction to, like almonds, peanuts, kidney beans. This would be the type of situation where I wouldn't eat all those things in the same day. Know what I mean?
I am going to follow up with the naturopath, and I'm going to take these results with me when I go see the gastroenterologist at the end of the month. Really nice to have one piece of the puzzle.
Haven't got "the boy's" yet...but his will be way more interesting because he hasn't avoided any food except straight milk. Funny though, since we've been back from my sister's, I haven't let him have any dairy and he has stopped complaining of stomach pains...except for the one day when he accidentally got a grilled cheese at school...
To be continued.
Allergy test results
Answers coming
Saturday, February 13, 2010
In 2-3 weeks I will receive my results from my food allergy testing. Do you have ANY IDEA how exciting that is? My "new" naturopath explained that there are different levels of testing. The first level is the "anaphylactic" level. The other levels (not sure of the "order") are for stuff like Celiac-indicating immune reactions (IgA) and the one she tests are IgG (I believe). So, IgG is a measure of an intolerance, and the test gives you a "mild reaction" to "strong reaction" gradient so let's say you have two things you mildly react to, you might choose not to eat them on the same day. Gives you a framework. My sister, for instance, mildly reacts to almonds. So she chooses not to drink almond milk, so that she can eat a handful of almonds for protein/calcium, etc.
I am SO SO SO excited to find out. One thing she is testing is gluten, but as it's IgG, not IgA, it's not the strongest indicator of Celiac. However, if I have no reaction on the IgG scale (as I understand it) chances are it's not the issue. Anyways, it's lots to think about and I'll share more as I learn it. Maybe I could find a way of posting my results so you could see how the test looks. :)
I may also be able to continue being treated by this naturopath by phone. I really liked her. Really to the point, but without being cold. Great listener. I think she and I will get along fine. In the interim, she prescribed a supplement called Glutogenics that is supposed to help with the inflammation in my intestines. So far so good! That and a double-dose of the probiotic I'm taking seem to be calming things down after a week of ++ symptoms. I think one of the things I have an intolerance to is corn. It just so happened that last week, I had tortillas and tortilla chips a few times and my reaction to that was a strong indicator (I think) of an intolerance.
Okay, gotta run, talk soon!

I am SO SO SO excited to find out. One thing she is testing is gluten, but as it's IgG, not IgA, it's not the strongest indicator of Celiac. However, if I have no reaction on the IgG scale (as I understand it) chances are it's not the issue. Anyways, it's lots to think about and I'll share more as I learn it. Maybe I could find a way of posting my results so you could see how the test looks. :)
I may also be able to continue being treated by this naturopath by phone. I really liked her. Really to the point, but without being cold. Great listener. I think she and I will get along fine. In the interim, she prescribed a supplement called Glutogenics that is supposed to help with the inflammation in my intestines. So far so good! That and a double-dose of the probiotic I'm taking seem to be calming things down after a week of ++ symptoms. I think one of the things I have an intolerance to is corn. It just so happened that last week, I had tortillas and tortilla chips a few times and my reaction to that was a strong indicator (I think) of an intolerance.
Okay, gotta run, talk soon!
Answers coming
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