|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.
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.
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.
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.
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.
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.
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...
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.
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.
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.
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.
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!