I realize this is primarily a food-allergy blog, but being that Celiac disease symptoms and the strict avoidance of gluten is very akin to the strict avoidance of foods we're allergic to, I am including this experience on this site. If you feel this does not concern or interest you, I apologize and you may skip this post and move on to the next or past ones.
So for the past week, I've been trying to follow a gluten-free diet, based on the severe stomach and body-ache symptoms I've been experiencing for the past six weeks. Trying is the keyword, since I found out that even a tiny bit of gluten/wheat has affected me with several days of suffering; I now realize why people with Celiac disease are just as neurotic about what they ingest as people with food allergies. Cross contamination of even a crumb of gluten can set off severe symptoms for days or even weeks.
The symptoms for me were so bad that some days I laid in bed wanting to die from the flu-like pain (in head, neck, arms, back, legs), nausea and severe cramping. Not to mention the fun stomach problems that make your stomach look like you're having twins.
For those of you who don't know, this is in addition to my strict avoidance of peanuts, soy and most peas and certain tree nuts, which I'm anaphylactic to. UPDATE: Also came to a final conclusion in 2014 I have a delayed hive reaction to dairy. Add to that my severe environmental allergies to dust, pollen, ragweed and mold...as well as my contact allergies to dimethicone, all PEGS and Vitamin E (soy derivatives).
I must admit staying positive is challenging at times, but then I remember you, my readers....and all the people I might help by sharing my experiences.
So here it is, the blog post that will document my "Gluten Challenge."
Today, I finally got a call back from my GI doc who told me all my bloodwork and tests came back negative, so they have ruled out any stomach parasites, ulcerative colitis, crohn's disease and probably a myriad of other stuff I have no clue about. I also had a CAT scan done at the ER two weeks ago that came back normal.
As some of you might know, the only true way to officially diagnose Celiac disease (celiac sprue) is through a biopsy of the small intestine, which is done through an endoscopy. My doctor recommended this for me in a couple of weeks. I am demanding five weeks, since studies show that is how long it takes for significant enough damage for diagnosis to occur; the last thing I want is a false negative and to have to go through this later.
The precursor to a biopsy is something called a "Gluten Challenge" which entails eating a significant amount of gluten daily for at least one meal per day (i.e. 4 slices of bread, 2 cups of pasta, etc.)
I will be documenting each day on this blog post. Why, I honestly don't know. But something is telling me I should. So here I go.
Day 1
Tonight I ate a spicy chicken sandwich from Cheesecake Factory with a side of fries. I also indulged in two pieces of their delicious brown bread...
10:52PM An hour has passed since eating and I'm feeling nauseous with a lot of rumbling in my tummy. Still way too soon to tell how regretful I'll be. I'm mentally preparing myself for the worst.
11:52PM Severe stomach problems ensue. Body aches beginning to radiate through legs and arms.
Day 2
11:23AM Coffee with a bit of organic milk (I'm lactose intolerant, so can only tolerate a bit) Surprisingly, the body aches are not too bad today, probably a 3 on a scale of 1-10, as compared to last week's 10, where I couldn't get out of bed. Stomach is definitely bloated, slight cramps in lower front abdomen.
2:11PM Just got back from Indian buffet...had chicken tikka masala, one piece of naan bread, rice, lamb vindaloo, raita and kheer. Belly is completely bloated and lower back aches. Now drinking a Synergy Black Chia drink with chia seeds and kombucha (for probiotics). Very sleepy, time for a nap.
11:08PM Just got home and am having severe bloating and slight body aches in lower back, arms and head. Ate a raisin bagel an hour and a half ago with butter to definitely fulfill my gluten quota for the day....now feeling slightly nauseous.
Day 3
1:37PM Ate a beef Tostada Salad at Green Cactus. Got home and fell straight to sleep for 4 hrs.
7:30PM Cramping and pains in stomach, hip sides. Stomach churning and just seems to be getting more and more bloated. "Fat tops" to cover belly now ensue.
9:16PM Just finished eating 3/4 of a personal pan pizza at Barnes and Nobles' Starbucks. Its not even been five minutes and my stomach is hurting. Feeling like I will need the bathroom very soon. Rash around my mouth and by my nose and itchy backs of legs probably from a mixture of Springtime allergies and this afternoon's non grass-fed beef (soy allergy). Grrr.
12:50AM Ate two packets of Koyo Garlic Pepper Ramen (soy-free). Felt slightly nauseous after and body aches seemed to get worse.
Day 4 (4/11/2013)
10:11AM Having coffee and feel overall like crap. Dull flu-like body aches and tiny shooting pains (arms, legs, back, neck). Also feeling very mentally "down"...not sure if I can handle this challenge til May or June...
2:29PM Had a piece of Lemon Pound Cake (bc they didn't have my Petit Vanilla Bean Scones) from Starbucks and a double-shot espresso with two inches of steamed milk (my usual). I realize the pound cake might have soybean oil, but I don't have many convenient options for this challenge. All breads in Giuseppe's had vegetable oil. Continuous body aches that range from an 8-9 are all over....slightly shaky....feel like I have the flu, but I know I don't. Nausea is getting worse. Now drinking a Synergy Black Chia Kombucha for the probiotics and omegas.
3:44PM Drinking tons of water. Having stomach issues and pain.
6:34PM Drinking another double espresso and more water because I don't want to fall asleep.
9:37PM Ate penne w/ vodka sauce. Body aches seem to have lessened.
12:31AM Drank coffee and juice. Stomach is starting to have sharp pains and lots of movement. Very bloated, look about due for triplets, this time. Slightly nauseous. Starting to realize as I'm writing this that my caffeine addiction needs an intervention.
2:59AM Strange sharp pains in my lower belly and sides. Dull ache in lower back. Muscle pains in arms.
Day 5
1:24PM Woke with hardly any pain whatsoever. Went to Green Cactus for chicken tostada lunch. Stomach started getting bloated and slight ache ensued after an hr. Body aches started around the same time, but only a 5 on a scale of 1-10.
7:45 Triple shot espresso w/ steamed milk and bottled water. Bought some crackers to munch on to fulfill my 'gluten quota' for the day. Body aches are a bit worse at this point.
10:16PM The night begins with a Long Island Iced Tea....then two waters.....then another LI Iced Tea after an hr. Can't feel body aches anymore since I'm laughing too much.
Day 6
4:37 AM Nausea gets so bad I have to take a prescription nausea pill. Body aches are at a 6-7.
6:24 AM Cooked myself a bowl of penne ala vodka since I couldn't eat anything at the diner I went to with friends. Ate and fell asleep.
3:04PM Drinking coffee and planning on going to the gym, although having some body aches. (5-6)
Stomach is churning and just overall fatigue.
11:20PM Ate Wendy's Spicy Chicken Combo (because I'm a glutton for punishment sometimes) and I got a mild soy rash around my mouth and a little itchy.
Day 7
5:25PM Yes. I slept a ridiculous amount of time. Triple Espresso with two inches steamed milk. Drank TWO Synergy Black Chia Kombucha as 'breakfast/lunch,' to get my probiotics, fiber and omegas in.
7:56PM Bloated belly and overall slightly achy (5-6) but trying not to think about it.
9:05PM Ate sautéed Organic Chicken (in sesame oil, salt, dash balsamic vinegar, black pepper, lots of granulated garlic, ginger powder and chili paste) with white rice. Then a quickie Caesar (soy-free mayo, garlic powder, balsamic vinegar and lemon juice) with a TON of croutons (to fulfill my gluten quota for the day)
10:11PM Starting to feel aches in legs...
Day 8
2:00AM Severe aches in legs ensue (8-9). Some pain radiating allover (3-4). Stomach problems. Slight nausea.
3:27PM Coffee then homemade quickie Caesar salad with TONS of croutons. Watching the news and the Boston Marathon bombings made me nauseous and extremely emotional...drank a Synergy Black Chia kombucha for probiotics/omegas.
8:01PM Severe fatigue and tons of bad body aches in neck, back, head, arms, legs (8/9 on a scale of 1-10). Might go lay down since pains are so bad and try to sleep.
11:34PM Woke still fatigued but hungry. Made homemade BLT sandwich with egg on Rye/gluteny, grainy soy-free bread. Aches became severe after a few minutes and stomach issues ensued.
Day 9
1:34PM Woke with severe body aches (level 8-9) and very fatigued. Had a coffee while trying not to think about the flu-like body aches. Pinpointed pain seemingly in my kidneys? lower back area and front lower belly. Slight nausea.
4:11PM Went to Cheesecake Factory with mom and shared a Crusted Chicken Romano and ate two pieces of the white sourdough bread. Body aches progressively got worse and continued at a level 8-9 for hours after; nausea also increased as did fatigue.
6:30PM Very tired and craving another caffeine fix, but trying to cut down on caffeine/espresso intake since my doc called today and they found a small cyst on right ovary which they're monitoring. (Mom says caffeine makes cysts grow, so I'm cutting down...)
7:30PM Was falling asleep at the bookstore so gave in to half regular/half decaf coffee at Starbucks.
10:12PM Ate some leftover chicken with rice and hot sauce. Body aches continued but were definitely not as bad as earlier. Stomach issues ensue.
Day 10
11:12PM Had a chicken Tostada at Green Cactus. Ate half of the shell. Body aches seemed to worsen a few minutes after eating (level 5). Stomach started hurting pretty badly.
12:49PM Fell straight to sleep.
3:24PM Woke with severe stomach spasms and stomach problems.
5:42PM Small Starbucks coffee (I know, I know). Small packet of Organic Alphabet Crackers (soy-free). Lots of water. Achy but not too bad.
7:45PM Nausea and stomach gurling and hurting.
Day 11
12:11AM Sautéed myself a large slab of sirloin steak w/ garlic, coconut aminos, salt and pepper in olive oil. Ate with rice. Achiness has dissipated. Ate a piece of soy-free rye 'fitness bread' from Whole Foods with lingonberry jelly.
2:21PM Coffee. Left ear very achy (ear infection from immune issues?) Nausea. A lot of body aches. Ate a piece of soy-free rye 'fitness bread' from Whole Foods with honey on top (so gross but gotta get my gluten in without soy). Body aches, fatigue and just all-around feeling like crap. Definitely feeling 'down' and overly emotional.
Went to karaoke this night. Drank two Johnny Black on the rocks and had one shot of raspberry vodka...^-^ Then Wendy's at about 12:30AM for a (GASP!) Baconator. Of course my lips started itching from the soy oil and lecithin in the bread....*sigh*
Day 12 - Was kind of a blur....and the body aches were RIDICULOUS. Level 11 from 1-10. Prob from the vodka and bread from night prior.....
Day 13 - Didn't record times, but had triple espresso with two inches steamed milk from Starbucks and Green Cactus Chicken Tostada. Then that night had Wendy's...again. This time the Spicy Chicken Combo. Stomach was definitely acting up. Yes, mood has definitely changed....yes, rashes around lips and hands are beginning...but getting my daily gluten quotient for this Gluten Challenge without soy is nearly impossible!!!
The reason being that most soy-free and nut-free items are ALSO gluten-free.....I guess because companies are trying to appeal to more markets? Well its ANNOYING.
Sorry...a little frustrated. Going to go put Elocon around my mouth now....
Day 14 - 12:42PM - Coffee, then two Synergy Black Chia kombucha drinks (since I likely need massive Omega-3s and probiotics at this point). Went for a 1.5mile walk at the boardwalk to take advantage of the gorgeous weather. Legs got achy fairly quickly and feel like I'm coming down with a cold or upper respiratory infection.
5PM - Went for sushi with a friend straight from the boardwalk, so didn't have my coconut aminos (soy-free soy sauce alternative) with me. So yes...I ate soy sauce because I thought 'it would be worth it.' For those few minutes of eating my yellowtail with cucumber sushi alongside my salmon with cucumber, it was...and I happily told my friend how it'll be fine, because yes, at the moment I felt fine, although my mouth was slightly itchy and the inside of my mouth was also very slightly itchy. Update: IT'S NOT! I am now suffering the consequences of my momentary lapse of all knowledge, reason and good judgement...in the form of a rash around my mouth and nose, extreme fatigue and hand eczema.
7PM - Got a triple shot espresso with two inches steamed milk at Whole Foods then drank another Synergy Grape Chia Kombucha (My fave is the BLACK CHIA but they were sold out; I'm kind of ridiculously addicted).
11:50PM - Ate a Fitness Bread from Whole Foods made of rye with lingonberry sauce on top (for my gluten quota). So gross.
Days 15-18
Didn't record anything but definitely had a bad soy reaction from Sunday. Time to order more coconut aminos (soy-free alternative). Also now battling a cold/flu due to my lowered immune system from everything. Continued eating a good amount of gluten daily.
Day 19 (4/26/2013)
5:12AM - Finally feeling better in terms of food allergies, but fighting a cold/flu. Body aches are extremely bad, both due to flu and gluten. Circadian cycle is all messed up since I'm sleeping so much during the day. Ate a bowl of Kashi Hills Cereal, Blackberry, 9.8 Ounce
which is GMO-free, nut-free and soy-free but DOES contain wheat, so I fulfilled some of my wheat quota.
Didn't record rest of day due to flu.
Day 20 - Not recorded.
Day 21 -
1:32PM - Coffee. Achy.
2:25PM - Went and bought my Synergy Cherry Chia Kombucha (my new favorite flavor!) with probiotics and chia seeds which decrease inflammation. Chia seeds contain lots of omega 3s which are awesome for improving your mood and well-being.
5:44PM - Ate a bowl of two soy-free Koyo Garlic Pepper Ramen, 2.1-Ounce (Pack of 12)
with one cube of Edward & Sons Not-Beef Bouillon Cubes, 3.1-Ounce Boxes (Pack of 12)
. A ramen-lover's dream if you have soy allergies! The noodles are made from wheat, though, so celiac and intolerant people be aware!
Day - I have no idea.
But I've had it. So I made it all the way up until today, Cinco de Mayo, the day of booze and Mexico, yet, I still sit here sober, very achy, DEPRESSED, extremely fatigued and anxious.
All because of stupid gluten.
I came to the decision yesterday to stop this self-inflicted challenge and cancel my procedure. Yes, you heard me right. My doctor did not even tell me how much gluten to have. She just scheduled the appointment and told me to continue eating bread and pasta.
Online studies show that celiac sprue does not show up in a biopsy or bloodwork unless you are eating a good amount of gluten for at least FIVE WEEKS straight. At first, she had scheduled my biopsy for two and a half weeks later but I called and insisted on waiting at least five weeks before the endoscopy.
She told me that week my bloodwork did not show up as having celiac disease (of course not! I was not put on a Gluten Challenge and I was eating a lot of gluten free foods for the days prior!)
The fact that my doctor did not tell me much makes me very leary of going under anesthesia for something that would not change....well.....anything, really. Whether I have celiac disease or whether its gluten intolerance, I still have to cut out gluten to feel better, right?
The only thing I get is official documentation of diagnosis, which may be shown to the IRS to get the surplus back for what I pay for gluten-free products at the end of the year. What else do I really get? Nothing except risks of complications or not waking up (which I know chances are slim, but why risk it if you don't have to?).
So for all of you who have gone through the challenge and the biopsy, I congratulate you! It definitely is not easy by any means...and I definitely have a sincere appreciation of what people go through.
UPDATE: I ended up doing an upper endoscopy due to ulcer symptoms. Here is the VERY private story which will surely open your eyes...
Thank you for following my mini-journey and I hope it clues you in to what you or someone you know might be experiencing. Hopefully it shows you how much what we eat plays a role on how we feel and live. Going gluten-free will not be easy and I'm sure there will be slip-ups now and then, just like with allergies...but at least for the most part, I am in control of my health....especially if I continue to cook at home. Make sure you join my Pinterest page if you haven't already! I will continue to add gluten-free, soy-free and nut-free recipes whenever I can!
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| Pretty close picture to what it looks like when we are 'glutened.' |
The symptoms for me were so bad that some days I laid in bed wanting to die from the flu-like pain (in head, neck, arms, back, legs), nausea and severe cramping. Not to mention the fun stomach problems that make your stomach look like you're having twins.
For those of you who don't know, this is in addition to my strict avoidance of peanuts, soy and most peas and certain tree nuts, which I'm anaphylactic to. UPDATE: Also came to a final conclusion in 2014 I have a delayed hive reaction to dairy. Add to that my severe environmental allergies to dust, pollen, ragweed and mold...as well as my contact allergies to dimethicone, all PEGS and Vitamin E (soy derivatives).
I must admit staying positive is challenging at times, but then I remember you, my readers....and all the people I might help by sharing my experiences.
So here it is, the blog post that will document my "Gluten Challenge."
Today, I finally got a call back from my GI doc who told me all my bloodwork and tests came back negative, so they have ruled out any stomach parasites, ulcerative colitis, crohn's disease and probably a myriad of other stuff I have no clue about. I also had a CAT scan done at the ER two weeks ago that came back normal.
As some of you might know, the only true way to officially diagnose Celiac disease (celiac sprue) is through a biopsy of the small intestine, which is done through an endoscopy. My doctor recommended this for me in a couple of weeks. I am demanding five weeks, since studies show that is how long it takes for significant enough damage for diagnosis to occur; the last thing I want is a false negative and to have to go through this later.
The precursor to a biopsy is something called a "Gluten Challenge" which entails eating a significant amount of gluten daily for at least one meal per day (i.e. 4 slices of bread, 2 cups of pasta, etc.)
I will be documenting each day on this blog post. Why, I honestly don't know. But something is telling me I should. So here I go.
Day 1
Tonight I ate a spicy chicken sandwich from Cheesecake Factory with a side of fries. I also indulged in two pieces of their delicious brown bread...
10:52PM An hour has passed since eating and I'm feeling nauseous with a lot of rumbling in my tummy. Still way too soon to tell how regretful I'll be. I'm mentally preparing myself for the worst.
11:52PM Severe stomach problems ensue. Body aches beginning to radiate through legs and arms.
Day 2
11:23AM Coffee with a bit of organic milk (I'm lactose intolerant, so can only tolerate a bit) Surprisingly, the body aches are not too bad today, probably a 3 on a scale of 1-10, as compared to last week's 10, where I couldn't get out of bed. Stomach is definitely bloated, slight cramps in lower front abdomen.
2:11PM Just got back from Indian buffet...had chicken tikka masala, one piece of naan bread, rice, lamb vindaloo, raita and kheer. Belly is completely bloated and lower back aches. Now drinking a Synergy Black Chia drink with chia seeds and kombucha (for probiotics). Very sleepy, time for a nap.
11:08PM Just got home and am having severe bloating and slight body aches in lower back, arms and head. Ate a raisin bagel an hour and a half ago with butter to definitely fulfill my gluten quota for the day....now feeling slightly nauseous.
Day 3
1:37PM Ate a beef Tostada Salad at Green Cactus. Got home and fell straight to sleep for 4 hrs.
7:30PM Cramping and pains in stomach, hip sides. Stomach churning and just seems to be getting more and more bloated. "Fat tops" to cover belly now ensue.
9:16PM Just finished eating 3/4 of a personal pan pizza at Barnes and Nobles' Starbucks. Its not even been five minutes and my stomach is hurting. Feeling like I will need the bathroom very soon. Rash around my mouth and by my nose and itchy backs of legs probably from a mixture of Springtime allergies and this afternoon's non grass-fed beef (soy allergy). Grrr.
12:50AM Ate two packets of Koyo Garlic Pepper Ramen (soy-free). Felt slightly nauseous after and body aches seemed to get worse.
Day 4 (4/11/2013)
10:11AM Having coffee and feel overall like crap. Dull flu-like body aches and tiny shooting pains (arms, legs, back, neck). Also feeling very mentally "down"...not sure if I can handle this challenge til May or June...
2:29PM Had a piece of Lemon Pound Cake (bc they didn't have my Petit Vanilla Bean Scones) from Starbucks and a double-shot espresso with two inches of steamed milk (my usual). I realize the pound cake might have soybean oil, but I don't have many convenient options for this challenge. All breads in Giuseppe's had vegetable oil. Continuous body aches that range from an 8-9 are all over....slightly shaky....feel like I have the flu, but I know I don't. Nausea is getting worse. Now drinking a Synergy Black Chia Kombucha for the probiotics and omegas.
3:44PM Drinking tons of water. Having stomach issues and pain.
6:34PM Drinking another double espresso and more water because I don't want to fall asleep.
9:37PM Ate penne w/ vodka sauce. Body aches seem to have lessened.
12:31AM Drank coffee and juice. Stomach is starting to have sharp pains and lots of movement. Very bloated, look about due for triplets, this time. Slightly nauseous. Starting to realize as I'm writing this that my caffeine addiction needs an intervention.
2:59AM Strange sharp pains in my lower belly and sides. Dull ache in lower back. Muscle pains in arms.
Day 5
1:24PM Woke with hardly any pain whatsoever. Went to Green Cactus for chicken tostada lunch. Stomach started getting bloated and slight ache ensued after an hr. Body aches started around the same time, but only a 5 on a scale of 1-10.
7:45 Triple shot espresso w/ steamed milk and bottled water. Bought some crackers to munch on to fulfill my 'gluten quota' for the day. Body aches are a bit worse at this point.
10:16PM The night begins with a Long Island Iced Tea....then two waters.....then another LI Iced Tea after an hr. Can't feel body aches anymore since I'm laughing too much.
Day 6
4:37 AM Nausea gets so bad I have to take a prescription nausea pill. Body aches are at a 6-7.
6:24 AM Cooked myself a bowl of penne ala vodka since I couldn't eat anything at the diner I went to with friends. Ate and fell asleep.
3:04PM Drinking coffee and planning on going to the gym, although having some body aches. (5-6)
Stomach is churning and just overall fatigue.
11:20PM Ate Wendy's Spicy Chicken Combo (because I'm a glutton for punishment sometimes) and I got a mild soy rash around my mouth and a little itchy.
Day 7
5:25PM Yes. I slept a ridiculous amount of time. Triple Espresso with two inches steamed milk. Drank TWO Synergy Black Chia Kombucha as 'breakfast/lunch,' to get my probiotics, fiber and omegas in.
7:56PM Bloated belly and overall slightly achy (5-6) but trying not to think about it.
9:05PM Ate sautéed Organic Chicken (in sesame oil, salt, dash balsamic vinegar, black pepper, lots of granulated garlic, ginger powder and chili paste) with white rice. Then a quickie Caesar (soy-free mayo, garlic powder, balsamic vinegar and lemon juice) with a TON of croutons (to fulfill my gluten quota for the day)
10:11PM Starting to feel aches in legs...
Day 8
2:00AM Severe aches in legs ensue (8-9). Some pain radiating allover (3-4). Stomach problems. Slight nausea.
3:27PM Coffee then homemade quickie Caesar salad with TONS of croutons. Watching the news and the Boston Marathon bombings made me nauseous and extremely emotional...drank a Synergy Black Chia kombucha for probiotics/omegas.
8:01PM Severe fatigue and tons of bad body aches in neck, back, head, arms, legs (8/9 on a scale of 1-10). Might go lay down since pains are so bad and try to sleep.
11:34PM Woke still fatigued but hungry. Made homemade BLT sandwich with egg on Rye/gluteny, grainy soy-free bread. Aches became severe after a few minutes and stomach issues ensued.
Day 9
1:34PM Woke with severe body aches (level 8-9) and very fatigued. Had a coffee while trying not to think about the flu-like body aches. Pinpointed pain seemingly in my kidneys? lower back area and front lower belly. Slight nausea.
4:11PM Went to Cheesecake Factory with mom and shared a Crusted Chicken Romano and ate two pieces of the white sourdough bread. Body aches progressively got worse and continued at a level 8-9 for hours after; nausea also increased as did fatigue.
6:30PM Very tired and craving another caffeine fix, but trying to cut down on caffeine/espresso intake since my doc called today and they found a small cyst on right ovary which they're monitoring. (Mom says caffeine makes cysts grow, so I'm cutting down...)
7:30PM Was falling asleep at the bookstore so gave in to half regular/half decaf coffee at Starbucks.
10:12PM Ate some leftover chicken with rice and hot sauce. Body aches continued but were definitely not as bad as earlier. Stomach issues ensue.
Day 10
11:12PM Had a chicken Tostada at Green Cactus. Ate half of the shell. Body aches seemed to worsen a few minutes after eating (level 5). Stomach started hurting pretty badly.
12:49PM Fell straight to sleep.
3:24PM Woke with severe stomach spasms and stomach problems.
5:42PM Small Starbucks coffee (I know, I know). Small packet of Organic Alphabet Crackers (soy-free). Lots of water. Achy but not too bad.
7:45PM Nausea and stomach gurling and hurting.
Day 11
12:11AM Sautéed myself a large slab of sirloin steak w/ garlic, coconut aminos, salt and pepper in olive oil. Ate with rice. Achiness has dissipated. Ate a piece of soy-free rye 'fitness bread' from Whole Foods with lingonberry jelly.
2:21PM Coffee. Left ear very achy (ear infection from immune issues?) Nausea. A lot of body aches. Ate a piece of soy-free rye 'fitness bread' from Whole Foods with honey on top (so gross but gotta get my gluten in without soy). Body aches, fatigue and just all-around feeling like crap. Definitely feeling 'down' and overly emotional.
Went to karaoke this night. Drank two Johnny Black on the rocks and had one shot of raspberry vodka...^-^ Then Wendy's at about 12:30AM for a (GASP!) Baconator. Of course my lips started itching from the soy oil and lecithin in the bread....*sigh*
Day 12 - Was kind of a blur....and the body aches were RIDICULOUS. Level 11 from 1-10. Prob from the vodka and bread from night prior.....
Day 13 - Didn't record times, but had triple espresso with two inches steamed milk from Starbucks and Green Cactus Chicken Tostada. Then that night had Wendy's...again. This time the Spicy Chicken Combo. Stomach was definitely acting up. Yes, mood has definitely changed....yes, rashes around lips and hands are beginning...but getting my daily gluten quotient for this Gluten Challenge without soy is nearly impossible!!!
The reason being that most soy-free and nut-free items are ALSO gluten-free.....I guess because companies are trying to appeal to more markets? Well its ANNOYING.
Sorry...a little frustrated. Going to go put Elocon around my mouth now....
Day 14 - 12:42PM - Coffee, then two Synergy Black Chia kombucha drinks (since I likely need massive Omega-3s and probiotics at this point). Went for a 1.5mile walk at the boardwalk to take advantage of the gorgeous weather. Legs got achy fairly quickly and feel like I'm coming down with a cold or upper respiratory infection.
5PM - Went for sushi with a friend straight from the boardwalk, so didn't have my coconut aminos (soy-free soy sauce alternative) with me. So yes...I ate soy sauce because I thought 'it would be worth it.' For those few minutes of eating my yellowtail with cucumber sushi alongside my salmon with cucumber, it was...and I happily told my friend how it'll be fine, because yes, at the moment I felt fine, although my mouth was slightly itchy and the inside of my mouth was also very slightly itchy. Update: IT'S NOT! I am now suffering the consequences of my momentary lapse of all knowledge, reason and good judgement...in the form of a rash around my mouth and nose, extreme fatigue and hand eczema.
7PM - Got a triple shot espresso with two inches steamed milk at Whole Foods then drank another Synergy Grape Chia Kombucha (My fave is the BLACK CHIA but they were sold out; I'm kind of ridiculously addicted).
11:50PM - Ate a Fitness Bread from Whole Foods made of rye with lingonberry sauce on top (for my gluten quota). So gross.
Days 15-18
Didn't record anything but definitely had a bad soy reaction from Sunday. Time to order more coconut aminos (soy-free alternative). Also now battling a cold/flu due to my lowered immune system from everything. Continued eating a good amount of gluten daily.
Day 19 (4/26/2013)
5:12AM - Finally feeling better in terms of food allergies, but fighting a cold/flu. Body aches are extremely bad, both due to flu and gluten. Circadian cycle is all messed up since I'm sleeping so much during the day. Ate a bowl of Kashi Hills Cereal, Blackberry, 9.8 Ounce
which is GMO-free, nut-free and soy-free but DOES contain wheat, so I fulfilled some of my wheat quota. Didn't record rest of day due to flu.
Day 20 - Not recorded.
Day 21 -
1:32PM - Coffee. Achy.
2:25PM - Went and bought my Synergy Cherry Chia Kombucha (my new favorite flavor!) with probiotics and chia seeds which decrease inflammation. Chia seeds contain lots of omega 3s which are awesome for improving your mood and well-being.
5:44PM - Ate a bowl of two soy-free Koyo Garlic Pepper Ramen, 2.1-Ounce (Pack of 12)
with one cube of Edward & Sons Not-Beef Bouillon Cubes, 3.1-Ounce Boxes (Pack of 12). A ramen-lover's dream if you have soy allergies! The noodles are made from wheat, though, so celiac and intolerant people be aware!Day - I have no idea.
But I've had it. So I made it all the way up until today, Cinco de Mayo, the day of booze and Mexico, yet, I still sit here sober, very achy, DEPRESSED, extremely fatigued and anxious.
All because of stupid gluten.
I came to the decision yesterday to stop this self-inflicted challenge and cancel my procedure. Yes, you heard me right. My doctor did not even tell me how much gluten to have. She just scheduled the appointment and told me to continue eating bread and pasta.
Online studies show that celiac sprue does not show up in a biopsy or bloodwork unless you are eating a good amount of gluten for at least FIVE WEEKS straight. At first, she had scheduled my biopsy for two and a half weeks later but I called and insisted on waiting at least five weeks before the endoscopy.
She told me that week my bloodwork did not show up as having celiac disease (of course not! I was not put on a Gluten Challenge and I was eating a lot of gluten free foods for the days prior!)
The fact that my doctor did not tell me much makes me very leary of going under anesthesia for something that would not change....well.....anything, really. Whether I have celiac disease or whether its gluten intolerance, I still have to cut out gluten to feel better, right?
The only thing I get is official documentation of diagnosis, which may be shown to the IRS to get the surplus back for what I pay for gluten-free products at the end of the year. What else do I really get? Nothing except risks of complications or not waking up (which I know chances are slim, but why risk it if you don't have to?).
So for all of you who have gone through the challenge and the biopsy, I congratulate you! It definitely is not easy by any means...and I definitely have a sincere appreciation of what people go through.
UPDATE: I ended up doing an upper endoscopy due to ulcer symptoms. Here is the VERY private story which will surely open your eyes...
Thank you for following my mini-journey and I hope it clues you in to what you or someone you know might be experiencing. Hopefully it shows you how much what we eat plays a role on how we feel and live. Going gluten-free will not be easy and I'm sure there will be slip-ups now and then, just like with allergies...but at least for the most part, I am in control of my health....especially if I continue to cook at home. Make sure you join my Pinterest page if you haven't already! I will continue to add gluten-free, soy-free and nut-free recipes whenever I can!
I think you are both brave and wise to document this, not only for others but for yourself. This can be very important and help you remember later when you are tempted to go back to how things were when you're feeling yourself again, if you know what I mean. You will be in my thoughts and prayers, and I am praying for an accurate diagnosis for you! Best of luck with your test!
ReplyDeleteThank you, Julie! Yes, its true, how soon we forget when the call of Krispy Kremes or a pizza craving takes over my mind....the same goes for my allergies...I used to allow myself just a little soybean oil here and there, but the repercussions of delayed eczema, gynecological problems (from ph issues) and brain fog/fatigue/depression just weren't worth the momentary satisfaction.
ReplyDeleteThank you so very much for your support and prayers...
I also have the same exact symptoms however the culprit is soy and eggs. I can't remember if you are allergic to eggs. I was given a blood test and the Dr. was specific as to where I had my blood drawn and where she sent for testing. Once I eliminated the eggs alone not to mention the soy, within days I felt a difference.
ReplyDeleteScent Free Savvy-
ReplyDeleteInteresting! I am not allergic to eggs, but when I was little I was very allergic to wheat. I don't seem to be having any skin reactions from the wheat (yet), just fatigue, stomach and the body aches....so time will tell. I never attributed my gluten reaction to allergy really since my soy/nut reactions are nothing like the reactions I've been having. But being that symptoms can differ from food to food, I will consider getting allergy retested for grains.
Thank you for sharing and stopping by =)
I realize you said your reaction to soy is different than what you seem to be experiencing to gluten, but would believe you're actually consuming soy in a number of those foods you're eating from these restaurants.
ReplyDeleteYes, you are correct, the pizza definitely contains vegetable oil so that would be my first soy allergy no-no that I've done thus far besides the non grass-fed beef. I know in Cheesecake Factory, they use mainly canola oil and I always let them know of both my allergies before every order, so they were safe.
DeleteI've eaten at Green Cactus before and have not had reactions since most of their foods are fresh and not from cans and they also use 100% canola oil for any frying/sautéeing.
Soy does not affect my stomach...it affects my skin in the form of rashes/hives and it also affects my ph levels (most of the ladies here know the consequences of messed up ph levels). Soy protein (or tofu) causes anaphylaxis for me.
Unfortunately, there's not many choices for me in terms of easy food on the go for this Gluten Challenge, so I'm sticking to places I know that are somewhat safe. I don't have a breadmaker at home and none of the breads on the market are soy lecithin-free. So I can only do the best I can. Tomorrow I'm going to pick up some 'safe' soy-free bread at Uncle Giuseppe's to make my homemade garlic bread. Thank you for the reminder to stay on track with my soy allergies...you are right, the last thing I want is a cumulative reaction along with the issues I've been experiencing! Thank you for stopping by....
Oh, and to add to that, most Indian restaurants use ghee or clarified butter for all the dishes so I've been safe at Curry Club, too...as long as I stay away from the meatballs. Plus I always talk to the waiters before I get food. =)
DeleteI understand about doing the best you can. I'm still trying to completely figure out my own soy allergy, and barely eat out anymore. I have a couple of 'go to' places that I know I tolerate ok, but am hesitant at most places even if they say there's no soy since it seems to be hidden in so many things. Good luck with the rest of your challenge:)
ReplyDeleteYes, unfortunately for a lot of places, its trial and error, but here are my 'safe' spots thus far:
ReplyDeleteGreen Cactus, Cheesecake Factory (just make sure to specify with waiters beforehand-desserts are definite no-no! Also stay away from Caesar or mayonnaise-based sauces or dressings since these have soybean oil), authentic indian restaurants (chicken tikka masala and lamb vindaloo are my faves, but talk to the waiter about your allergy and the oils they use beforehand...they usually use ghee/clarified butter and halal meats)and sushi restaurants (just order by roll and bring Coconut Secret Aminos as your 'soy-free' soy sauce)...also check out restaurants close by to you on Allergy Eats' site.
Always, ALWAYS carry your meds and Epi-Pen if dining out!!! Better safe than sorry....but dining out safely IS possible, just take every extra precaution and don't be SHY to talk to the chefs!!!
It takes time to get used to which places you can and can't go...I agree, its very nerve-wracking and cooking at home is really the only 100% safe way to go, since so many chefs do not understand the whole soy derivative thing... (Hence why Pinterest is on my 'web speed dial')
Thank you =)
Oh, to add to the dining out for sushi tip, if you have anaphylactic shock to tofu, make sure to tell them you're deathly allergic to tofu, so that nothing touches tofu and your sushi is not prepared anywhere near tofu. Re-iterate this at least TWICE...and do not eat any 'miso' dressings on salads or the miso soup. Not to scare you all, but I once went into anaphylaxis once because I ate a 'ginger' salad that had pureed tofu in the dressing...so simple sushi rolls (aka tuna, yellowtail, tobiko, etc.) are the safest way to go!
ReplyDeleteSounds like you have a long way to go with lots of not so fun things left to go through. I am so sorry because it sounds so awful, but I will be praying for accurate results for you for sure. If you need anything from moral support to just someone to rant to or questions, my email is always open. :) *hugs* Take care, Maya!
ReplyDeleteThank you so much, Julie =) You're an angel. *hugs*
ReplyDeleteMaya,
ReplyDeleteI have problems with some boyfriends in regards to my allergy problems. I've been confronted by some as being a hypochrondiac. Not only am I allegric to soy and peanuts I am lactose intolerant I worried that I might have some other allegries as well. Strangely enough I've never experienced allergic reactions to any guys that I've been with. Even still I've been called paranoid and/or nuts for being so sick.What advice do you have with regards to dating and guys when it comes to allegries?
Anonymous,
ReplyDeleteExcellent question! I wish I had an easy answer for you, but this is a huge topic in itself rarely addressed.
What I WILL say, is that if you have anaphylaxis to peanuts and soy, you are NOT being a hypochondriac. JUST BECAUSE YOU DID NOT HAVE A REACTION FROM SOMEONE BEFORE DOES NOT MEAN IT CANNOT HAPPEN. For this reason, take your precautions (I tell my dates I cannot kiss them within three days of eating peanuts or soy protein/tofu. If I'm in a relationship, I tell them they cannot eat those things one WEEK prior to engaging in intimate situations). Also, ALWAYS have medications and an (up-to-date) Epi (or two deprending on your distance to nearest hospital...remember each Epi buys you TEN minutes) with you at ALL times.
YOUR LIFE is at stake. People don't truly understand unless they're going through it, but people who truly care about you WILL. I promise. Its a good way to find out who really is worth your time and energy.
I hope that helps you...and thank you for stopping by and visit again soon...you never know what topics may apply to you and your situations!
*hugs*
Maya
Sorry to read about the cyst. :( Those run in my family, so I have been checked a few times for them - so far, so good. I will add that to my prayer list for you. Hang in there, my friend. *hugs*
ReplyDeleteThank you, again, Julie....
ReplyDeleteThese things just don't faze me anymore. I figure they might be all related and have to do with my diet. Plus I'm not too worried since cysts can come and go for many women, depending on how well you take care of yourself.
Thank you for your kind words and prayers. They truly do mean a lot.
To add to what I said above, I do realize that 'taking care of yourself' might not have anything to do with things popping up...sometimes it has to do with hormone levels and genetics. But I do believe there are 'balancers' found in nature, for example, black cohosh root....some may interact with drugs, but if more people knew about these curing herbs, we would negate the need for many surgeries and unnecessary treatments. Just my opinion.
ReplyDeleteMy local Target actually carries some soy free bakery items if you need grain. I know, it sounds crazy, right? But I have found a few things there that I buy on occasion. As far as I know, they are not gluten free. I have a "super Target" here, the kind with a fruit/veggie/meat area. In that area they have these long breads that look like French breads in shape and smaller baguettes. Those are soy free and I have eaten them with no problems.
ReplyDeleteThey also have two types of soy free crackers. Kashi 7-grain crackers and "Wasa Multi Grain Crispbread". Note the Wasa product tastes like cardboard. I bought it for my pets to munch on though so...
Of course I just learned from your website the NEW names soy hides under and I didn't check the bread for that as I don't have any right now. I only buy it when I get the craving for French toast. I feel better when I'm grain free or when I eat very little grain. I do know the bread has sulfur in it like corn syrup, etc.
I get body aches from histamine reactions. It also makes me feel like throwing up. racing heart, traveling pain, chills, sweating, some sneezing... soy also gives me aches in various joints.
Please stay safe in regards to eating soy!
Thank you so much for sharing! I'm happy you found something useful....and yes, I get the aches from histamine reactions, too, but I guess I'm also too busy scratching and itching to really notice the pain much during those times.
DeletePlease take care of yourself as well and thank you for stopping by =)
I am going to add something positive here. Hopefully it might cheer you up a bit? Eating that grain / gluten is clearly making you feel horrible.
ReplyDeleteSometimes I see my soy allergy as annoying (like when finding toothpaste or bar soap seems impossible) but other times I see it as a positive thing. You know why??? Because of my soy allergy, I am eating healthier. It's a lot more work as there is a lot of cooking involved, but it pays off in the end. Eating meat you cook yourself, raw fruits and veggies (which you can cook if you want)... it makes you a lot healthier than the people eating all of the processed stuff full of weird chemicals, preservatives, fillers, etc. The diet will pay off in the end. Yes, I do miss things but in many cases its been so long since I ate them they don't bother me anymore. I still have an occasional Coke and cheat a wee bit, but mainly my diet is pretty healthy. Its the way our ancestors ate. You can avoid lots of diseases this way, as many are caused by diet it seems (like diabetes).
When I went very low grain I lost weight, too. That's an additional bonus. I was more square I guess, but now I have a waist I can see. I'm a mesomorph so I have a lot of muscle, especially on my legs from all the walking I do.
Maya, do you know of a soy free antihistamin? and pain reliever?
ReplyDeleteMaya, I am glad you stopped the challenge, if I'm honest. I know how much you wanted a definite, but it sounds like it definitely wasn't worth it! Let me know if there are any gluten-free, soy-free, nut-free recipes that you need help finding. :) I'd love to add some to my blog, so I don't mind the research! :D Hugs to you, and you are in my prayers! Email me if you need anything!
ReplyDeleteI'm going through very similar issues with my GI tract. Have been for over 15 years. I'm actually going in for a colonoscopy and endoscopy next week. I've been on a strict GF diet for over 5 years. I did feel better for the first 3 years of leaving gluten behind. However, I'm feeling worse than ever over the last year or so. Long story short... I always thought and was told by my previous Dr. that if the GF diet makes you feel better, then why go through the expense or suffering of any further tests. Well, I've been informed by my new Dr. that no matter what, diagnosis is VERY important....Reason being: You have a much higher likelihood of developing complications like certain cancers, and other autoimmune diseases, etc...if you have celiac. I just wanted to throw that out there in case it wasn't already known. I'm worried for myself at this point, especially since I've been so sick for so long. Hopefully I'll get some answers and solution(s) so I can start to heal and feel better soon. Best of luck to all :-)
ReplyDeleteAnonymous,
ReplyDeleteThank you for that. Deep down I know that's what I have to do. Its just so damn hard. I'm basically putting off the inevitable for now, but I do appreciate your concern.
I hope your procedures went well. Hopefully you got the answers you needed and are on your way to better health! You are very courageous...I wish I had the strength at this point to go on with it...for now I will do my best to stay gluten-free!
The antihistamine thats liquid form for children is soy free
ReplyDeleteReally useful blog. My 18 month old tested pos for celiac via bloods and is currently soy gluten nut dairy fructose and potato starch free alongside veg tht has a skin and shelled lentils....
ReplyDeleteI cant bring myself to put her thru the challenge for the biopsy she suffered to much already with bloating vomitting pain banging head everywhere n crazy behaviour like falling lots over nothing aswell as stunted growth....
Its tough to make the call really...
Anonymous,
DeleteIts definitely a tough call for someone that young. To me, that is a quality of life issue and if its truly torturous to go through, I think you've made a wise decision to just eliminate it completely from her diet. She already goes through so much...I remember when I was that young, what I went through.
A firm diagnosis of Celiac Sprue is a legal tool for her school, to be sure they accommodate her needs....and might help you get money back at the end of the year if you save your receipts on GF items.
Its a tough call, but definitely is manageable. With all her food allergies as well, def check out Pinterest for safe recipes for her and the fam! My name on there is Mayashappyplace
Thank you for stopping by and I hope you get an answer to help guide your decision soon.
Maya thanks for posting this. I found it through a google search for gluten challenge [so I likely won't come back for a reply...i'm not much of a social media person] but let me tell you what this meant to me - my nephew has been diagnosed celiac's. My sis in law kept trying to convince me to go gf like she & my brother did [they couldnt afford testing but decided to try it, got health benefits & stuck w/it] my main issue is irregular mid cycle bleeding that gyno can't find a reason for [after plenty of tests] & their only option for treatment was take birth control pills...but i want a baby =) & haven't gotten pregnant after a couple of years so...eventually my sis talked me into a GF diet. I've been doing this about 3 months now & the gluten filled foods cravings are....lets just say that product placement in stores is very mean to me! the urge to cheat is there. I've only had minor health improvements, still some spotting, but some good results in not being so moody & depressed. so i'm now questioning whether i should find out if i have actual celiac's or just an intolerance [like when i was a kid] just so i know if i can deal with the consequences of cheating [youre right - you do need another blog for that!] or if the consequences are much more severe.
ReplyDeletehere i am now - kinda excited about researched the gluten challenge & seeing what it'll do to me...& what you gave me was the possibility that it might also not be gluten - but maybe soy or something else contributing to my cycle problems & other issues. it didn't occur to me that -I- could have an allergy to soy & now i will look into this & other potential food allergens. You're right - its in everything! & plenty of other crap that we shouldn't need to eat. you also gave me some perspective on how difficult a lifestyle like this is & it's not fair that our food choices are so limited & controlled [boycots!] you have my empathy & gratitude.
ps - i have been reading some internet info suggesting that new research indicates a gluten challenge can be reduced & modified [a couple of bread slices daily for about 2 weeks] but there's so much conflicted data. good luck on staying healthy! <3
I am so sorry to hear of the mess you've experienced up until now but definitely happy you've found me. I'm glad I could offer you some support and useful information.
DeleteAs for gluten affecting female organs and causing gynecological issues because of hormonal changes...this is another reason why we can't "cheat" and cooking at home becomes all the more imperative. Endometriosis runs in my family and I have had cysts that have come and disappeared....probably due to the many hormonal changes my body goes through due to food. Now that I am aware of those changes, I also started looking into herbal treatments. I currently take Female Hormonal Balance/Vitex Formula (herbal tincture formula)by Quantum Herbal Products just before my period and whenever I have severe cramping. Because of this product I haven't had to be on dreaded birth control pills for the excruciating pain I used to get and just 6 weeks ago I had a cyst on my right ovary which is now gone according to last week's sono. They also found a collapsed one on my left, so apparently, something I'm doing is working! Do not take the female formula if you get pregnant and ALWAYS check with your doc first. Do your own research and check interactions for each herb in the formula since many doctors are actually not aware of these products. Pharmaceutical companies were trying to get herbs banned! Why? Because they WORK. They are the pure form of medications, so be very careful when taking with other meds and always consult your doc.
Thank you so much for your words that are like a big hug to me. You made my week!
As for the mixed prerequisites for gluten challenge, I guess I'm an all or nothing person, trying to avoid having to go in AGAIN to disprove a false negative...so self-torture is actually a bit reassuring for me lol.
Thank you for stopping by and please come back again...I pray that this reply finds you!
Well done on keeping it together with everything you're going through!
ReplyDeleteThis test is expensive but may help to give the answers you're looking for. Gluten challenge is not recommended and text states in some cases it is possible to test for the antibodies 1 to 2 years after an individual has eliminated gluten from their diet:
http://www.enterolab.com
http://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html
Good luck!
This is awesome, anonymous, thank you for sharing. I will definitely be checking it out as will many of my readers, I am sure.
DeleteI have to go gluten free and sorry free I need help tazzanmax@aol.com
ReplyDelete