I have been feeling pretty miserable for over a year now, and struggling with why. There were some days I woke up so sick I thought I had the flu, while other days my symptoms were more bearable. Then there were those days I thought I was deathly ill. I couldn’t figure out why. I managed as best I could, with whatever symptoms revealed themselves on any particular day, but there were countless days I just had to cancel my plans, and try to function through the hazy blur of aches and pains, bloating, nausea, no appetite, headaches, break outs, chills, overwhelming fatigue and I would often become dizzy and unable to concentrate at its worst. Oh so many days, I became depressed, trying so hard to figure out why I was always so sick! I would attempt to battle these symptoms with what positive thinking I could pull up from the depths of my weak and trembling body. I just couldn’t figure out what was causing such horrible symptoms…
I rarely go to the doctor, so I finally gave in last year and went thanks to a gentle nudge from my beloved Lizzi. I was thinking I had some bowel obstruction causing my bowel issues and awful physical symptoms. I began to fear the worst- that something more serious was going on. The doctor prescribed some strong laxative pills to clean me out, yet it did nothing for my symptoms. I managed through months of continued suffering before I went back again to ask for a more in depth investigation as to why I would be so sick. I had a CAT scan and kidney tests and blood work- all of which came back fine. I had already been tested for allergies and had never had any reactions to food before, but I kept thinking there must be something I am eating or doing that is causing all of this…
I couldn’t connect any particular food or activity directly to feeling sick. I was so depleted and discouraged, I was losing hope and honestly? I felt like every day was a gamble to whether I would be able to have a productive and healthy day full of hopeful vitality. I’d often lose. It’s been awful. Last winter I remember day after day, feeling so horrible and desperately crying to my husband about being barely able to function. I was truly scared something very serious was wrong with me.
It was bad.
Many people that knew about this, talked about gluten and the idea of it being the culprit, but I dismissed it having never had a problem with it before. As I poured my heart out to some precious online friends, my beloved friend Jennie continued to raise the idea of gluten being the possible problem (bless her). I sought a GI specialist and scheduled both a colonoscopy and an endoscopy, fearing I had severe ulcers or something worse in my intestinal track or colon. After Jennie told me that you can develop gluten intolerance later in life and promised me I would notice a difference within a week, I decided I had nothing to lose-
I went gluten free.
After a few days, I started to feel less achy and weak and fatigued. My break outs stopped and by the end of the week my bowels started to function normally. I was realizing this may actually be IT! For the first time, I was encouraged that I would finally get well!
I have never been so relieved in all my life. As I continued monitoring my diet and eating gluten free foods, I began to feel so much better! Then I accidentally ate a ton of it not realizing I did and woke up feeling absolutely HORRIBLE. After researching the food I ate, I realized I did in fact eat gluten (Teriyaki sauce) and this was the confirmation that led me to truly believe I found the answer.
I was amazed that someone like me, who never had a problem with any food whatsoever- could be knocked OUT physically by gluten. I honestly thought only people with Celiac Disease (that is genetic) were the only ones who would need to tend to gluten reactions. I had no idea that people can actually develop gluten intolerance despite not having Celiac Disease.
After yet another accidental dose of gluten (I really suck at this), I have been miserable for the past week and slowly starting to feel better again. I am new at this thing. It is not an easy feat to start a gluten free diet without careful research and consideration of all the foods you eat!
I am both relieved and saddened to have this answer. I still wonder why I have developed this gluten intolerance. What on earth would cause it? I need to really dive into research and educate myself much more on all of this. I’ve merely spent these past weeks truly thankful that I now KNOW what has been ailing me for so long! I know I know I know!
Oh, it was so awful to be so sick and not know why…
What is settling into my heart now, is the reality that I must live a GF life. I look into my fridge and question everything. My pantry is gluten heaven. Those cinnamon rolls I stocked up on for the upcoming holiday, all the delicious breads and the best pizza in town will never be eaten again- by me. I’m slowly starting to learn that although I have to say goodbye to SO many foods I love, there are many options out there that I have only begun to acquire.
It’s a long road ahead for me. I’m only at the beginning of this path.
I’m so grateful to Jennie, because I would have never considered Gluten to be the cause of my sickness. (By the way, she has a rockin’ GF recipe page on her blog, full of amazing food!)
I’m so glad I finally have an answer.
I know GF diets have been around for years. I never really tuned into them, because I had no reason to invest my time or attention to anything related to gluten free foods or the affects gluten can have on someone.
I’m sharing my story, because I can only wonder if there are others out there feeling miserable and wondering why. It’s such a horrible place to be in when you are continually sick and have no answers. Oh, how I know.
Symptoms vary for everyone, but I am going to list the symptoms I had again, in case you may be experiencing any of them yourself.
Bloating and gas.
Irregular bowels.
Nausea. No appetite.
Stomach pain.
Horrible headaches.
Weakness and fatigue.
Shaky, blurred vision, dizziness, unable to concentrate.
Break outs of red bumps. (They were on my face.)
Body aches.
Chills.
If you have any of these symptoms, perhaps this is something you may look into as well. I found this cool website with loads of information.
I’m not thrilled to face my future living Gluten free. I’m going to miss the foods I love. It’s not going to be easy, but rather frustrating and complicated…
But oh, I’m SO ready to feel better.
I’ll take that over deep dish pizza any day. (She says with a tear in her eye.)
Aw, glad you figured out what has been wrong with you this past year or so and can only imagine what you must have been feeling. Still, it also has to be hard to keep with all gluten free and don’t be too hard on yourself for the possible backsliding here or there. I know it has to be uncomfortable physically when this happens, but still don’t have to beat yourself up mentally in the same right when this may occur. Hugs and hoping you are feeling well now xoxo 😉
OH Janine- you are such a sweetheart and I totally needed to read this comment again today after accidentally eating more gluten the other day and waking up miserable. SO frustrating! I’m going to try to be patient with myself, thanks to you. 🙂
Oh, Christine, what a relief for you! I’m so glad you’ve found this answer AND that you’re sharing it! I’d be like you–dismissing gluten intolerance–so it’s good to read this story. I’m so glad you’re feeling better!
Right? I didn’t take gluten seriously at all. I’m ashamed to say it, but it’s true. Who knew? Now I do. Thanks so much for coming by my friend. I hope you are doing well! I miss you!
There is nothing you can’t enjoy! I’ve made copycat GF cinnabons too! It’s a challenge but it’s a good one. I keep remembering Psalm 16:6 as I eat my copycat foods, which are all so good.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
Your boundary leaves gluten out of the circle, but it’s oh-so-pleasant inside. 🙂
OH precious friend… I’m SO grateful for you. Thank you for your faithful encouragement and love. Oh, how I wish we lived near each other so you could help me cook!
PS: Still trying to find the ‘pleasant inside’ but I’m working on it!! lol I ate crackers that were very UNpleasant the other day. 🙂
Hi Chris Oh wow, so happy you discovered this for yourself and sharing it with others. I’ve been GF for a few years now and it’s definitely made a difference for me.
Amy, do you know I was SO sick all winter!! (Increasingly after you left) It makes so much sense to me now. I would wake up miserable and had NO idea why. Some days were brutal and I could not figure out what was causing me to be so sick- it really was getting to me. I’m really glad I finally listened to my friend about the gluten. I honestly didn’t know people can develop gluten intolerance and after looking at the symptoms- WOW. That was ME!
(I miss you! Email soon? Just think- a year ago you were HERE WITH ME!! Oh, how I LOVED seeing you. 🙂 )
I didn’t know you were experiencing any issues – I’ve been kind of going through the same thing. A blood test flagged me as having a possible wheat allergy, and then I went to an allergist and they said I tested negative (skin test) for the allergy. I removed gluten and did find some relief. What’s shocking is how many foods contain gluten!
I didn’t share this with many people, Allie. I kept it to myself- who wants to hear about me being miserable, ya know? And oh my oh my SO MANY FOODS have gluten in them!! I keep eating gluten accidentally and waking up the next day sick! I’m going to google everything I eat now. I mean, who knew all the sauces and soups and even bbq sauce had it? Ugh.
I was diagnosed with dermatitis herpatiformis 5 years ago and had to begin a strict GF diet. Let me know if you have ANY questions or want recommendations on the best crackers, bread, pizza, etc. Being GF is very hard, but more and more products are made GF and restaurants are better about catering to food intolerances & allergies.
Sara, it is such an encouragement to have you comment and share your experience! I would LOVE any names of good crackers, pizza, AND bread! LOL I have yet to find good crackers or pizza. Derek just made me funfetti gf pancakes last night that my friend brought me and they were good! (Slathered with syrup of course!) I’m so sorry you have to endure the strict diet, but I do hope it has helped heal you, my friend. I remember you were gf at Robert Frost. 🙂
Oh Chris! Wow, so glad you shared your story and so grateful you are on the road to recovery! So encouraged by Jennie’s comment above – I too have been trying to figure out what is up with me due to many similar physical symptoms for a year or two now. I have long suspected I need to go gluten free (maybe even all grain free, too) but it’s been so gosh darn hard to do. Haha! So glad to know I am not alone : ) We can do this together!
SYBIL!! I can’t believe you have been struggling with this too! We can do this together! PS: Don’t eat soy sauce, teriyaki sauce or bbq sauce without checking for gluten. Just realized they have gluten in them after eating them and waking up sick again. It’s SO hard to figure this out- I’m googling everything I eat now. I keep learning the hard way! I’ve got a lot to learn still.
Hi Chris! Don’t feel like the Lone Ranger. I think this syndrome is getting more and more press, and notoriety. My friend’s son lived for years like you, losing weight and not able to figure it out. So sad! He is also gluten free now, and feels great.
There are gluten-free bakeries now. And some will have both. You can do it! And you’ll feel just OCEANS better. I’m so glad you figured it out!
Blessings,
Ceil
I’m still struggling to figure it out Ceil. It seems gluten is in so many foods I wouldn’t think had it. Each time I accidentally eat it, I wake up sick the next day. I’m going to have to google everything. And I mean EVERYTHING.
I’m learning… 🙂
That’s why you have to visit us. A cookie bakery opened up last spring and it’s fully gluten free. See?
https://www.facebook.com/cookiedotworks/?fref=ts
Glad you got answers. I’m sure there are good copycats for many things. It will be hard to give up some old comforts but I suppose once you’ve done it for awhile, it gets easier? That’s what I hear.
NO WAY!!! A GLUTEN FREE COOKIE BAKERY????? That would be a dream come true!! Great. Now I’m totally craving cookies.
My story sounds eerily similar Christine! I’m off gluten too. When I went on vacation over the summer I tried eating it again and it was a huge mistake. I was sick the whole trip practically. I felt like it was kind of a fad thing and it wasn’t happening to me, but I feel so much better I’m not sure it’s worth the risk anymore. The upside is that I’ve lost over 30 lbs!!
30 pounds? WOW!! Do you know I have GAINED WEIGHT? Yeah, I’ve been so bloated and miserable and I haven’t been eating that much at all because I have felt so sick! I’ve been wondering how and why I could be gaining weight! Apparently it’s having the opposite effect on me!
I’m so glad you came by to share your story, Meredith. I’m encouraged by it and yet so sorry you had to suffer after trying it again on vacation! NO fun at all. I keep eating it accidentally and waking up sick all over again. It’s in EVERYTHING. Google is my new best friend. lol
My gosh..so glad you discovered the culprit. I see my husband go through similar things. But it requires a life change and commitment..and discipline. I’m so glad you are on a healing track! I’m going to keep a better eye on my husband’s health.
Have your hubs go GF for just one week and he will notice a difference! I decided I could do it for a week- that isn’t too long! He may realize the culprit too, and be motivated to go for it afterward. It DOES require a life change and commitment and discipline. It’s SO hard for me. I keep eating things that have gluten because it is in foods you wouldn’t think have it in them. I wake up miserable the next day and then google it and realize why I’m sick. Sigh. It’s a learning process for sure.
I’m so glad you were able to pinpoint why you were feeling awful. I’d love to recommend a book entitled ‘Grain Brain’ to you. It’s amazing!
Thank you so much for the book recommendation Lil! I’m going to go buy it! 🙂
I am SO glad you listened and tried gluten free and feel better for it!! That’s amazing!! I’m really really happy for you and know that while deep dish pizza is awesome, that there are rice-based pizza crusts that are delic as well. Yay to feeling better (and being less stinky because you know – GAS). 🙂 <3
Thanks so much sweetie! I’m really glad to finally have an ANSWER to why I have been so sick. Now I just need to google everything I eat- because man that gluten is in SO many foods. Oy.
Kitty, I am THEE PLEASEDEST OF ALL that you are feeling better now you’ve cut gluten from your diet. I was so worried about you, and you were feeling so drained and awful all the time, and it was horrid to know you were hurting and there was nothing I could do to help.
THANK GOODNESS you know now. And yes, it’s going to require big changes, but yaknow what? It’s going to be SO WORTH IT! You will have a new lease of life and energy once you get back on track.
You got this. And I’m TOTALLY up for gluten-free peanut butter cookies and crackers. But the cocoa will have to be made with soya milk cos of my dairy allergy lol.
I am so grateful for your love and encouragement through this entire process, my love. It has been a brutal one, but I really am so relieved to have an ANSWER. Unfortunately, I keep messing up and eating the damn stuff and waking up SO sick all over again. You wouldn’t believe all the different foods that have gluten in it. I ate BBQ sauce and Worcester sauce in sloppy joes the other night and BAM… the next morning I was miserable. I have to google everything now. I’m still trying to recover once again. Learning as I go I suppose.
You can be gluten intolerant and not have Celiac? Who knew? Gosh, I am SO happy for you that you’ve managed to sort it out. What a dreadful time you’ve had. I bet you were getting really scared. I know I would be. Should you ever pop by for a visit and a stay I’ve got you covered. We have the best grocery store just two blocks up the hill. They carry endless gluten free options. Folks drive for miles to shop there.
I’m coming! I need to shop there and AND see you! 🙂 And yeah- I had NO IDEA about gluten intolerance as well. I was so surprised and still am fascinated by it all. I keep messing up though- gluten hides in all kinds of food you would never think has it. Then I wake up extremely sick and go investigating and find it WAS in a certain food I never would have thought. Ugh. I’m still trying to figure this out.
Oh no! I’m so sorry to hear about this, Chris, though I’m glad you at least know now the reason behind you feeling so horrible. I know of several people who have developed gluten intolerances in their adult life. Thankfully there are a TON of options that didn’t exist not that long ago. While it can be pricey, I think Whole Foods has a lot of GF options, and Trader Joe’s might as well. There are lots of GF breads and pizza, and some restaurants even offer that option! (Just be careful, because from talking to people who can’t eat gluten their only fake GF for the people who are off gluten because they think it’s healthier than eating regular products versus truly not being able to tolerate gluten). Good luck, I know it will be a challenge but I’m sure you will find lots of great GF alternatives!
Thanks so much Bev. I had no idea you could develop this gluten intolerance later in life. NO idea. It is such a relief to know what has been ailing me for so long! I’m still trying to figure out what products are GF and those that actually taste good. I’m learning that gluten is in SO many foods… and I’m learning the hard way. Ugh. I’m definitely going to be extra careful from now on.
Awww, I’m so sorry you’ve been sick for so long but I’m glad you were able to finally pinpoint the cause. Man that sucks… but you can work around a lot of your cravings… it just takes some prep.
When my youngest was 2 she had wheat and gluten allergies – OY! We managed though… and you will too.
Big hugs my friend.
xoxo
Thanks for your sweet encouragement, my friend. It does SUCK! lol But it is manageable. I’m still trying to figure out what foods I can eat. Gluten is in everything! ACK.
Wow! First, of all, I had no idea you were feeling so sick for so long. I am so glad you have an answer now and can begin feeling better. Also, I know the GF thing is hard. My MIL was diagnosed with full blown Celiac years ago before there was GF everything in the stores. The first year was really hard and she wasn’t even feeling all that badly before the diagnosis. But, now, she says she doesn’t even really miss it and it has become so much easier because there are so many options available at the regular grocery store (She used to only be able to get stuff at a special organic food place.) I hope this is indeed the answer for you and you can continue to feel better and better!
I kept it secret from pretty much everyone except my close friends and hubs and kids. It’s been awful. I’m slowly trying to pick and choose what foods are good and what taste disgusting! lol It’s a learning process for sure. If I don’t watch it, I will eat gluten accidentally just as I did a few days ago. I woke up SO sick. It’s amazing to me how that happens.
Oh my sweet friend! I’m so glad you found the culprit of your misery. Quite honestly, I think I definitely have issues with gluten as well. Even my moods greatly improve when I stay away from it, but I always fall back into its clutches. It is a hard, but incredibly important way to live. Praying for you, Chris! I know you will be a great inspiration for me and many others as well. Thank you for sharing this.
It is so hard to go gluten free- but oh my I must. I just ate it on accident the other day and I am still so sick. I simply must check everything I eat. I’m learning that I can’t risk it anymore. My mood along with my physical symptoms is greatly affected, so I have no doubt that happens for you too, my friend. Thanks so much for your sweet encouragement!
I had no idea you could acquire this later in life! I have a family member I keep trying to get to go GF, but to no avail. They say all the food is gross, so I’m going to have to check out Jennie’s page.
I’m glad you’re starting to feel better!
Thank you so much for coming by to read this. 🙂 I’m still trying to find ‘good tasting’ gf food! It IS out there. These days there are so many options, which I am grateful for! And if nothing else, I eat a few bowls of chex cereal to hold me over. 🙂 Have your family member go gf for a week and he/she will start to feel a difference in that short amount of time. Then it will be worth it!
So glad that you discovered the culprit! I can’t imagine the Not Knowing… I’d be freaking out while my husband tried to assure me all was fine with his Arnold “it’s not tumour” voice and I’d have to then kill him (though pretty sure the judge would side with me ). My cousin’s wife just found out she has this too and she had just begun all her holiday baking — NONE of which she can eat now. However, she had been feeling bad for quite some time now too, and when she started sampling all those baked goodies and started feeling TONS worse: it clicked for her too. Now she is finding lots of yummy GF recipes that she will bring to Christmas dinner so we can all be educated as well.
It’s been a huge relief in many ways, but it’s also still very difficult to navigate through. I just accidentally ate gluten the other day and I am still sick from it. Ugh. It’s going to take more time to figure out all those foods that hide the stuff. But at least I don’t have to fret over what on earth could be wrong with me! I’m so glad for that.