When I got my celiac diagnosis in 2007, after a year of not feeling well, I ASSUMED I would start feeling better if I just stopped eating gluten.
Much of what I read online led me to that conclusion.
But like many things with celiacs disease, assumptions and reality are two very different things.
Which leads us to today’s awesome guest post from Kara Pena at Kompromised Kitchen. Kara is a fellow celiac who “loves to read classic literature, write mediocrity, serve her church, raise her daughters to become women she would want to have as best friends, and love her man.”
It’s all you Kara…
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I have been living with my Celiac for three years now and I continue to be amazed and frustrated with this disease. The havoc it can wreak, and the curve balls it can throw, constantly keep me on my toes. As soon as I think I have the diet down, something slips by me and I get sick. As soon as I think I know exactly what being ‘glutened’ looks like in my life, I get a new or changed symptom.
Never a dull moment with this one.
My friends say to me, “Well, at least you won’t die”. Oh, really? Apparently I can.
Or they say, “Well at least you know whats wrong with you now, so you can get better”. Another, REALLY?
I have been struggling through issue after issue since my diagnosis: my blood was so bad I had to have an ablation surgery that had the potential to toss me into pre menopause (sorry, I know this is mostly a guy blog).
I gained seventy pounds that has decided they love me so much they never want to leave, even though I was paying $400 month to a trainer to get rid of them, (p.s., I’m not a sedentary person. never have been).
I had to stop my go-to workout of running, due to osteopenia, that I’m trying to reverse. Found out I have Hypothyroidism, and that a whole different bucket of fun. All from this vicious little _ _ _ _ _ of a disease.
I am a bulldozer of a woman, and fighting comes easy to me. But I have to say, most days Celiac kicks my butt. I would love to complain about this more, but I am usually too tired, (I know, AMEN!, right?)
I look back through the consistent fog in my brain (mostly due to my disease but partially because I have adult and teenage daughters who keep late hours), and realize that some of my most momentous blows to the face have come from my expectations; what I believed at my diagnosis versus the reality of this disease permanently taking up residence in my home with my family and I.
Here are a few:
- I assumed that I would drop that extra ten pounds I had put on.
In reality I put on about 5 pounds a week until I hit a ceiling of 70LBS only to find out I have Hypothyroidism and now struggle to inch my way down. - I assumed that I would finally get my energy back.
In reality, I feel more tired than ever. - I assumed that once I learned how to keep gluten out of my life everything would go back to before.
In reality, keeping gluten out of my life would take the rest of it. - I assumed that my friends and family would understand and “get it”.
In reality, most of them think I’m exaggerating and think I would be fine if I just didn’t eat the bread. - I assumed that I would take a year, get everything under control and get my life back to the way it was before my Celiac triggered.
In reality, my life will NEVER be the same. - I assumed that once I got a clean bill of health I could get back to the things I was passionate about.
In reality, Celiac disease and its awareness became one of my greatest passions, (and I’m still trying to get that clean bill).
To quote my youngest daughter: “It’s not that Celiacs have depression, it’s that they just don’t get any good news”.
So let me try to turn this around since I sound like Debbie Downer.
What I am learning day by day is that if I don’t try to pack her up and move her out, I do better. See she isn’t going anywhere, so we should make friends. She is going to become my closest confidante whether I like it or not.
I will need to listen to and consider her voice above the voices in my head, the voice of the woman I used to be, or even the voices of my well meaning but uneducated friends.
I will need to count the blessings of faith and family who have sworn to never turn their backs, always keep an eye out for gluten and promised to pick me up when she’s beating the crap out of me.
I will need to look up at the stars rather than down at the mud.
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About Kompromised Kitchen:
I have always loved cooking, baking, etc. My kitchen has always been my second favorite room in my house. I am at peace there. For me working in the kitchen becomes a quiet world. The place I play, the place where there is no stress. When my girls were babies I dreamed of starting a catering company when they were old enough for all of us to be a team. When I was diagnosed with Celiac my kitchen was compromised. How would I ever be at peace in my kitchen again? How would I ever again make food that made everyone at the table groan? How could I ever make another birthday cake for a kid or do a baby shower since flour was now my kryptonite? I would get back into my kitchen and do what I do best. Cook, bake, play…with gluten free ingredients.
I started a gluten free catering company so a kid at his birthday would be safe and the guests didn’t feel like they were eating cardboard. I offer classes and consulting to teach Celiacs and those with gluten allergies how to enjoy their food again. I understand that once we leave our front door we are no longer safe, but I want people to know that in their homes they can experience true joy and pleasure with food again.
I had most of those assumptions as well. The friend and family part really sting…like you Kara I’m also trying to come down from the weight gain. I feel a little less alone with this post. Especially the gaining lbs part. Thanks for a great post. Keep positive!
Thanks so much!
Thank you for sharing Kara. It is still amazing me to read that I am not the only one with these problems! YEARS…only knowing my brother who also has CD…with nobody to talk to etc!
Thank you again Kara and GOOD LUCK with your new company!!!!!!!
Thanks. The resin I love Gluten Dude’s blog so much is that it allows us all to remember that we AREN’T alone. Such a great community here.
Wow, diagnosed just about 4 months ago and to wake up this morning to read this blog was an eye opener. I have most of those assumptions myself and am struggling all the time trying to find the “new me”. The one who will finally start to feel better. Reading about everyone else’s journey helps me learn what my new perspective should be, but the hope of someday feeling better continues to sit on my horizon… for now.
Try to keep positive and when it sucks, just visit the Gluten Dude…someone here “gets it”.
Thank you for this! I’m always happy (and very sad?) when I see others facing the same issues. I consider myself lucky 90% of the time, but when im glutenized (glutened? Glitenated?) I fall right back down in the dumps. I feel awful and when people don’t get why I’m miserable I explain it to them and feel like Debbie Downer’s more morose sister. And for years of being gluten free I can’t understand why I’m not better! It’s so frustrating sometimes but we all just want to know that someone else is going through it with us and that we’re not alone.
Thanks! Hope you see better health soon.
Kara, this is a fantastic post. My favorite line is your daughter’s assertion that “It’s not that Celiacs have depression, it’s that they just don’t get any good news.” So feeling this today.
Thanks. My youngest daughter said this. She is an amazing “gluten hunter” for me. She also keeps pace with me in the kitchen so I get a lot of encouragement from her. Feel better!
Thank you for the article Kara. I have been gluten free for almost 5 years now and I have NEVER cheated; I have been accidentally glutened a few times a year though. My symptoms have changed somewhat and seem worse since I am gluten free. I never got diagnosed, I was urged to go gluten free by many doctors and did so without getting testing. I had all the classic symptoms and the classic less obvious ones. My worst symptoms though, which were less classic, were severe pelvic (female) problems. Which are almost gone now and I had experienced these since I was about 7. Now I have a whole new set of those problems. I have severe fatigue, I can’t correct my sleep pattern no matter how hard I try. I seem to handle being regular sick worse than I did when I ate gluten, I think this is because I was used to feeling bad and dealing with it before. Just a month ago I started having severe heart fluttering followed by coughing and the loss of my voice. Now I have been diagnosed with reflux laryngitis. I already eat healthier and cleaner than most Americans, how did this happen? I can’t eat gluten, now I can’t eat: coffee or chocolate or tomatoes or anything a little bit acidic, the list goes on and on. I recently crossed into my 30’s, I wonder how much of this is aging, or normal aging on a body that is already pretty worn out for its age. My family has a history of stomach ailments but they seem to be more “normal” than mine, although they all seem to become really severe as they get into their 50s +. I also never lost weight when I went gluten free, at the height of my sickness, during a bout of CDiff also, I gained 30 pounds in one month (they said this is impossible, i assured docs it was not). That was ten years ago, I only lost about 10 pounds of that in the past 5 years, and I don’t regularly eat the gluten free bread like items that would keep weight on. Although I have lost about 10 pounds in the last month since my new problem. I have seen way more docs than have ever helped me, I read that I am pretty lucky to have gotten a diagnosis on my reflux laryngitis, that it is missed by even most ENTs, so I am thankful for that, apparently it feels a lot worse than it is lol! Anyway, it seems like it is never ending, something is always bothering me and usually it is something that is pretty hard to deal with and have a normal day. The only person who knows how bad it is is my husband, who met me at the height of my sickness. Most people don’t get it at all, it seems most people think you do exaggerate it and I have gotten the “you are doing it to yourself, if you just ignore it it would not be there” from more than a couple people and especially docs. I love to read other peoples’ experiences, it helps to not feel so isolated, something that is common when you have to silently deal with your body all day long. I just want a break!!!!!!!!!!!
I’m so sad for you feeling so crappy. I get it. I would encourage you to make connections with people on sites like this one. It weird that we don’t “know them” but they become great friends because we share each others’ burdens.
Eliza…if there is one thing I’ve learned thru my blog, it’s that celiac goes way beyond celiac, if that makes any sense. There are so many like you who struggle with so many health issues on top of celiac.
It’s beyond frustrating I know…
Please be really careful with that reflux. My father’s epiglottis was destroyed by it – undiagnosed until his second bout with pneumonia caused by drinking his morning coffee and having half of it go into his lungs.
Sleeping with the head of the bed elevated (even just a few inches) really does help.
Hope you will feel better soon.
Great article. I had a lot of these assumptions, too. Especially that I would feel better in a week after going gluten-free (which you hear a lot of other people bragging about…”I felt better in 24 hours!” kind of thing). In reality, it took me 1 1/2 YEARS to feel better. My antibodies were very elevated for the first 1 1/2 years after going gluten-free. I was extremely strict and kept wondering what I could be doing wrong. Unlike many of you, I don’t get sick or any noticeable symptoms if glutened. So it’s very possible I could still be consuming gluten from time to time and not even know it. The only way I know is if I still feel crappy and my antibodies aren’t going down.
This reminds me of when my mom and my aunt talked about my Celiac Disease. My mom was trying to educate my aunt more about it. Then my aunt said something to the extent of “well, she’s healed now so what’s the problem?” kind of thing. She simply doesn’t get it. Most of the people in my family don’t get it, but fortunately they don’t give me a hard time about it. They mainly just keep their mouths shut. I suspect that some of my cousins have it. I know the Celiac gene runs in my family because my mom and I both tested positive for it. Yet they don’t want to hear about it. I can understand denial about this, though. I was in denial when first diagnosed.
Anyway, I’m glad this was posted.
Thanks so much. I suppose it’s better if people just keep their negative comments to themselves. But the sad truth is most people will act like we’re crazy or worse…”trying to get attention”. Feel better.
I am not a great writer like all of you but I love this blog and the guest bloggers. I am so tired of being tired and watching everyone else have fun in the evenings while I watch TV, read and try to discover ways not to feel so tired. I am the only one in my circle of family, friends and co-workers that has CD. When I read this blog, it makes me smile and although I wish everyone healing, energy and recovery – it is just so nice to feel normal for a few minutes every day! Thank you, thank you.
That’s exactly how I feel about this blog!
I’m sorry for the reasons you need to be here, but I’m happy you found me and that my blog is helping.
I belong to a Quilt Guild. Every year we have a retreat for 3 days. We stay in a hotel and have our meals catered. 2013 was my first retreat. I asked if I could just not pay for the food portion of the retreat and supply my own food.. I was told that everyone has to pay the same. There were a few meals that i could eat, but I did take care of myself on other occasions. This year was entirely different. Of the 55 members of the guild, at least 5 are now willing to say they are gluten free. There were gluten-free options at every meal including a wonderful pizza. Hang in there and keep talking and educating people. You are not alone.
Kara, this post has been so helpful! Did your hypothyroidism show up in a simple TSH test, or did you need to see an endocrinologist to uncover it (if you don’t mind me asking)? I’m really struggling with weight gain and fatigue (coinciding with celiac, but not responding to GF diet). TSH is in normal range, but I’ve heard it’s necessary to see an endocrinologist for an accurate dx. I did lose 10-15 pounds of fluid immediately after going GF (inflammation went down). Any info would be helpful! 🙂
I’m curious to know this, too!!!
They did diagnose me TSH test but I still was in “low normal” range. I had to force them to test my absorption. It’s fine if you’re producing the hormone but you may not be absorbing it. I do see an Endo. doctor now. My doctor kept telling me I needed to cut my calories to lose the weight. When I started counting them I was barely at 1000 cal per day. I eat very healthy. I am now just trying to accept my new fatness and look as cute as I can at this weight. Hope you get some relief.
Thanks so much, Katie! I’ve decided to see an endo. If I ate less, I’d be eating nothing! Sometimes I feel guilty for worrying about my weight amongst all the other painful, harmful celiac complications I’ve got going on, but reading your response and bio has made me realize how unexplained weight gain isn’t my fault–that it’s as much an indicator of celiac issues as weight loss. I think it’s why some don’t take it seriously, “You don’t LOOK sick.” They just see that I lost 40 lbs and then gained 60 and assume its depression or something?? Ugh.
Darn autocorrect changed Kara to Katie. Sorry! The brain fog didn’t cause that for a change. 😉
Oh crap, I just pressed something and my post deleted LOL
I just wanted to say that I really like this post and am loving everyone’s comments on it, as well. I, too, am still waiting for all this energy that everyone said I would have after going gluten-free. The depression thing also hit home for me. I get pretty down some days, but I am working on making a life worth living, even if this is the best I am going to feel. Of course I want to get better. But I’m doing all the right things. If they find something else out, then I will do what I need to do to treat that, as well. But I can’t change the way things are right now. I thought that I could…they told me I could. But this is the way it is. And if I can’t accept the things I can’t change, then that’s when I suffer. Ha…yes, it’s a lot easier to say than to do, but like I said, I’m WORKING on it 😉
What I find myself really feeling is that I want EVERYONE ELSE…all the non-celiacs of the world…to understand these assumptions vs realities. I think that would make certain things a lot easier.
All I can say is AMEN! The energy thing is crazy. I try to describe it as doing every task in life while trying to pull a mack truck behind me. I sometimes thinks that if I’m gonna feel this exhausted and foggy brained I should be high, LOL. That’s about how useful I feel most days. I hope you feel better.
Haha, I agree! Or if I’m going to feel hungover every day, I might as well drink 😉
touche!
Sassy, this is what I say! Haha 🙂
I’m struggling with this too, Sassy. Started meditation, acupuncture and chiropractic this weekend for celiac symptoms AND emotional troubles that go along with it (dealing with symptoms, drastic lifestyle changes, not being able to work, insensitive people, etc.). We’ll see what happens. 😐 I usually just keep myself busy to deal with stress, but my body is refusing to let me do that right now!
I tried going to a celiac group thing, but there were people there who talked about cheating and eating gluten all the time or people with a slight gluten sensitivity were talking about how the bloating was a nuisance…needless to say it wasn’t helpful when I get sick for days from the slightest CC. The Eastern medicine and endocrinologist are my last resort for some relief.
Celiac disease changes your life forever – I’m realizing that after 1 1/2 years of eating gluten free with celiac disease. I think I did feel better within days of diagnosis but that high was replaced by constant surprises. I’m sailing along and then crash. I lost a bunch of hair, developed secondary food allergies and lichen planus – constant sores in the my mouth that prevent eating acid foods. My first support group meeting I was surprised to see all the heavy people when I had lost so much weight and was so malnourished. Now I’m considered well and eat nothing but good food at home and the pounds are piling on. It is a constant struggle. I don’t eat commercial products and rarely a cookie or sweet. I try to take advantage of the good days and socialize with my packed lunch but the surprises are not good ones. I don’t know if acceptance will come.
It may never come, but there are great sites like this where everyone gets it.
One of the crappiest things about CD is it is misery that love company. Secondary health issues are super common. I can’t encourage you with the weight issue because I still struggle with mine. My trainer told me to quit paying her because every week I came back 5 LBS heavier. All I can say is try to find some cute clothes that make you feel better. After all a cute fatty feels better than a frumpy fatty, but you will probably still have a hard time getting used to that growing image you see in the mirror each day. Try to stay positive.
It’s true about the clothes thing. I was quite underweight for a fairly long time before diagnosis, so while I am not really OVERweight now, I feel huge, especially because my clothes don’t fit. Suitable clothes go a long way towards making someone feel more comfortable in their own skin. Then again, they require money 😛
I agree 100% with your post, Kara. I had the exact same expectations and the exact same results. Everyone said going GF was going to be like the heavens opening up, the angels singing, and life would be like a 1950s movie.
It isn’t. Not at all. But most of the time, I’m either too tired or too irritated to fight it, because my energy goes towards keeping me safe from the food that’s trying to kill me.
All we can do is keep up the good fight. 🙂
So true. B-12 shots may give you a bit of an energy boost. But I don’t think that fatigue is going anywhere. Feel better.
Wonderful post. I am still trying to deal with the – This is my life – yet I’m not supposed to talk about it to others thing.
It is our new life ~ no we don’t just return to normal ~ and we should never feel guilty about our passion ~ it is the thing I love most about my Fellow Celiac/Gluten Intolerant Community.
There are days when I feel good, days that I feel great and then days that the brain fog and joint pain kicks back in along with the bloating and friends and family don’t get it ~ this is here with us for life. They take eating soo much for granted …. we can not anymore.
Your daugher is wise in saying “It’s not that Celiacs have depression, it’s that they just don’t get any good news”.
We’re in the process of getting a formal diagnosis for my son who is 14. About 6 months ago the children’s hospital told us he just suffers from depression. Emphatic words from my son to the doctor ” I’m not depressed. I’m just sad that I’m too tired to do all the things I want to do.”
The difference is that people suffering from depression don’t *want* to do anything. Celiacs can’t do the things they want to do and that is indeed sad, and does not mean you or any other celiac necessarily suffers from depression. Although depression is a possibility, it should not be the immediate diagnosis. It’s no easier to diagnosis than celiacs disease and yet the medical community is more than happy to drop that diagnosis on any individual who presents with fatigue from Celiacs disease!
Infuriating!!
It’s mind boggling. I am so sorry for your son. My daughter is 15 and I can’t imagine her having to feel like I do everyday. Just keep fighting for your little guy.
It is extremely infuriating. My constant stomach pain and indigestion pre-diagnosis, along with the fatigue, was considered “proof” of depression by one of my doctors in the beginning. The sicker I got, the more she kept trying to shove Prozac at me. It seems like whatever the symptoms, if the doctor doesn’t know what it is, put the patient on an SSRI. I wish your son well.
Fatigue is probably the hardest symptom I deal with. (I’m not talking about the same fatigue as when I’m “glutened”. The fatigue after being glutened should be in its own little category of tortures used to make war criminals talk.) I seem to cycle from pretty good energy(probably a “normal” person’s bad day) to feeling like my legs weigh 100 lbs each. Each time I feel a bit of energy I try to disect what I did/ate that may have caused it so I can keep doing it. Then I disect what I did/ate after slumping back into fatigue again. Nothing ever pans out as a “cure” or a “cause”. The Mister gets tired of me trying to figure it out. (Do you think I need to cut out “fill-in-the-blank”?) It seems a common thread for all of us. Each time my MD looks for some other autoimmune problem the results come up negative.
Who are these people that talk about how marvelous they feel after going gluten-free? It doesn’t seem to be any of us!
Ooooh! Yes! I’m always trying to think of what it is that I’m still doing wrong, what I still need to cut out of my diet! Talk about the blame game. It’s “obviously” my fault I’m still sick, because they said the gluten-free diet would make me better. Right.
Thanks, Kara for the suggestion about new clothes. I did do that this year when some of my pants were too tight. I gave to charity and got some new ones that make me feel better – nothing as bad as uncomfortable pants squeezing you. I splurged on nice shoes and tops too. I spend so much on necessary food for health that I figured this is necessary too for mental health. I work hard to keep my size from expanding too much but have to accept my new matronly shape. It’s a healthy shape for me – a stylish fatty.
I love this post and all of the comments. I am almost 9 years post diagnosis and my weight finally seems to be leveling off at about a 50-60 lb gain and I eat a third of what i ate before. The latest from discussions with my GI is that they don’t know why but Celiacs get fat in middle age……”don’t fight it, embrace it”. Believe it or not I found this liberating!! You are so right……..ditch the expectations and embrace life. I do what I can when I can and catch quick naps in between, I buy cute clothes to make my curves sexy, and remind my self that a couple hundred years ago a size 14 was sexy!! Most importantly, I have ditched the family and friends who refuse to get it and treat me like I am a bother and I embrace the people who embrace me.
Thank you for this post! I’m crying as I write this so forgive the horrendous spelling errors, if any.
I, too, have been recently diagnosed with hypothyroidism and have so much weight that I gained that won’t go away! I was also just diagnosed with type 2 diabetes and incredibly high cholesterol and am now on 4 different drugs. Most days, I just want it all to stop! What was the point of going gluten free if all these other things are going to come to the surface as soon as I start feeling human? Then I go to eat a salad and discover that I can’t even eat the flippin’ salad dressing any more because something in it (and Miracle Whip!) is making me bloat. I stood at the dressing section of my little local store and read every single bottle, but not one doesn’t have soybean oil in it (which I think I’m reacting to now). So there’s another thing I can add to my list of have-to-make-homemade-or-you-can-forget-it list! I can’t imagine why we would be depressed, do you? (note the sarcastic tone, please!)
LIsa…many celiacs share your frustration. Hang in there and vent any time you want on my blog.
I’m hypothyroid, too.
I just found this blog today and am so thrilled with it!
You mentioned salad dressing and I hear you about the soybean oil! I use a combination of olive oil and balsamic vinegar. You could add some herbs or parmesan (if you can tolerate dairy). It’s actually very good! I don’t have a recipe…I just throw it together.
Hope this helps.
Love this post and all of the comments. Thank you Kara and thank you Dude. As sad as it sounds, it’s nice to know others are struggling with the same issues. We’re not crazy, we’re not Debbie Downers, we’re all real people with real issues. We’re all in this together.
Some nurse practitioners are very helpful with thyroid problems. They have more time than docs. Try looking for a NP or a doc with an emphasis on functional medicine or “integrative”. stop the thyroid madness is a helpful website for those issues also.
Wow!!!!! It is soooo nice to know I am not the only one struggling with weight. And let me tell you I almost punched the last doctor who told me I just needed to stop eating junk food and fast food. When I told him I ONLY eat fruits, vegetables(no starchy ones), chicken and salmon…never fried….no sugar period and never eat in restaraunts, he said I must be eating too much fruit, so I should cut back. I had to restrain myself, walked out of the office and sat in my car and cried. I did not have the energy to do anything else!!! Celiac is my life partner unfortunately and I have had to simply accept that this is my reality and it will not be the same again! I have also stopped trying to explain it to people. I just quietly do me…it’s all I can do!
I am so sorry Peggy that you have had idiotic doctor experiences.
I too am so over doctors not listening and thinking we are creating this. Prior to me beginning to feel bad a year and a half ago I was fine. I am 43. I have always been fine minus a few illnesses here and there, allergies and some minor knee pain. It is ridiculous that they think we are making stuff up. None of us asked for this. I am not a whiner … just still suffering some and want answers. Thankfully for ME ~ I figured it out. No thanks to any of my doctors, minus a half of one. I’ll only give him a smidgen of credit!
Doctors are not accessible to us and friends and family don’t want to listen or understand. Luckily we all have each other ~ thank goodness for the Internet I have said on more than one occasion this past year. I would still be suffering more than I am now.
I am just now coming out of another foggy long moment – seems like over a week. Have sworn off eating out again and I think that is totally eat. Anytime I eat out I start feeling bad again. It is not immediate always, like a build up of a few times eating out over a week or two. J
ust not trusting any place now except home….and I still have to watch my husband on occasion.
Very thankful for you Gluten Dude and the community you are bringing together here on your blog.
Peggy, so sorry you went through that. I’ve gotten it myself.
be careful not to cry in those doctors’ offices. I had a DR. want to put me on depression meds. I told him i wasn’t depressed, I was pissed and frustrated (if there was something I could do, believe me It’d be done).
hang in there.
Thanks, Dude… I don’t mean to whine, but sometimes it gets to be just too much. Peggy, I hear you… we do everything right and it just seems to backfire on us! Wendy, I so wish we didn’t need doctors…
If I could draw my own blood I would… Or having insurance pay for functional medicine would be nice.
Think I need to stop responding via my phone – too many typos above.
What an eye opener this disease is. It is not a simple fix, it is a life style change, an education on nutrition and just how your body works. In some ways I am glad that the disease has educated me, and I have no problem eating gluten free.
My issue, and it is a giant pet peeve of mine, is education of what this disease is and isnt for the general public, and most especially the food industry.
I hope to see the day when we celiacs have many fast(but healthy) 100% gluten free restaurants and diners.
Right now, in order for me to stay healthy, I have to make all my food and bring it wherever I go : to work, to the mall, to a friends, weddings, birthdays, holidays, BBQ’s, road trips, ect..
There is no reason that 100% gluten free fast food chain cannot be delicious, and succesful and common place.
I would like all these celebraties to put their money where the mouths are..pun intended.
Well, this page just totally ruined me. I’m going to hunt for the xanax as I feel the panic attack coming on. 🙁
Wow – not that I wish this disease on anybody, but it is so good to know I am not alone. I was just diagnosed this past October 2012 and have been gluten free for about a month – or at least I think I have.
Long story short- I have been battling this disease for many years without knowing it, as many of you have.
I thought after cutting gluten out of my diet, I would start feeling normal again. For a short time I did, but for the most part I wake up feeling like total crap.
I have always been into excersising, lifting weights, jogging etc. but I my energy level is at an all time low.
Brain fog seems to overcome me most days and I dont feel like doing anything other then vegging in the lounge chair.
I wonder if this is phsycosimatic (spell) but I know me, and this is not me.. I have not been me for many years now and just wish the old me will some day come back, but I am starting to lose faith..
The pain is unbearable most times, and I am afraid to put anything in my mouth. But I know I must go on and believe there is an end to this.
And yes, friends and family dont have a clue – it sucks not being able to get the point accross – I AM SICK!
This is the best blog ever…..I also was diagnosed with Coeliacs Disease In October 2012, I have had the endoscopy, bloods etc, I lost 5kgs within weeks and went down to 46kgs before bing diagnosed… I have been told I have a Hiatus Hernia, I am Lactose Intolerant, Anaemic and Deficient in Vitamin D, in menopause. I had been ill with Stomach problems for years and kept going bck to the Doctor in the end I met a lady who had Coeliacs and her symptoms sounded so like mine, so I googled Coeliacs, thank goodness for Google, I went back to the Doctor and had her do Bloods which came back positive for Coeliacs, so was sent off for camera down my throat. Since going Gluten Free and Dairy Free, I still dont feel better, I am sore and ill every morning when i wake, never know what to eat, so have fruit about lunchtime and my main meal in the evening. On New Years Eve I thought i would treat myself to a Gluten Free Pizza form Hells Pizza, with in an hour i was in excruiating pain, I ended up on the toilet with a bucket for the whole night and was sick for days afterwards.. Again a few weeks later i thought i would have a salmon frittata within an hour my intestine was twisting and cramping, then i started sweating horrendously and then the run to the toilet and vomitted it all out, I was sick for days after that, I get to see the dietician next week, I have written a diary of what i have eaten and reactions to the foods, I will get her to send me off for allergy test as i know i am allergic to more than just wheat, The doctors or health professionals do not tell you much about the disease at all. I am 44 years old, I believe i have suffered this since a child, i was always sick. I am so glad I Googled and found this site as i couldnt understand why i wasnt feeling better nd yes noone but a Coeliac Sufferer understands that we are all very sick!!
Hi Carol. Glad you found us too. Since you are newly diagnosed, I’ll give you the advice I wish somebody gave me when I was first diagnosed.
Don’t eat gluten free foods!!
And by that, I mean don’t eat processed gluten free crap. Forget the bagels, pizza and bread for now. Stick with whole foods only for a few months. Your body is a mess right now and it needs to heal.
It’s not easy I know. But you’ll thank me.
You send a mixed message, don’t avoid gluten free foods as you should only eat gluten free foods..there are gluten free pastas soups lasagna etc that are great gf foods to start out with and help somewhat into the transition to a gf diet..
http://glutendude.com/gluten/stop-eating-gluten-free-foods/
Hi Ed. See the post above. It’ll help explain a bit more what I mean. Thanks.
Ok, I get that – I always just assumed when talking GF that meant all of those things.. the common lay person (so to speak) that never heard of Celiac disease and gluten, when you talk to them about GF diet, its easier to explain that it consists of all of that.. thats the point I’m trying to make.. but I totally understand where your coming from.
Ok, so here is somewhat of where I disagree when it comes to pasta alternatives, which we need complex cabohydrates as well:
Amaranth flour
Amaranth flour is made from the seed of the Amaranth plant, which is a leafy vegetable. Amaranth seeds are very high in protein, which makes a nutritious flour for baking. Alternative names: African spinach, Chinese spinach, Indian spinach, elephants ear.
Wheat free Gluten free
———————————————————–
Chia flour
Made from ground chia seeds. Highly nutritious, chia seeds have been labelled a “superfood” containing Omega 3, fibre, calcium and protein, all packed into tiny seeds.
Also known as “nature’s rocketfuel” as many sportspeople and superathletes such as the Tarahumara use it for enhanced energy levels during events.
If chia flour isn’t readily available then put chia seeds in a processor and whizz up some. If used in baking, liquid levels and baking time may need to be increased slightly.
Wheat free Gluten free
——————————————————————————
Quinoa flour (pronounced ‘keen wa’)
Quinoa is related to the plant family of spinach and beets. It has been used for over 5,000 years as a cereal, and the Incas called it the mother seed. Quinoa provides a good source of vegetable protein and it is the seeds of the quinoa plant that are ground to make flour.
Wheat free Gluten free
—————————————————————————
Soya flour
Soya flour is a high protein flour with a nutty taste. It is not generally used on it’s own in recipes, but when combined with other flours is very successful as an alternative flour. Can be used to thicken recipes or added as a flavour enhancer.
It needs to be carefully stored as it is a high fat flour and can go rancid if not stored properly. A cool, dark environment is recommended and can even be stored in the refrigerator.
Wheat free Gluten free
—————————————————————————–
So while some GF flour’s might be “fattening” and less nutritiouse, if you read the labels carefully, you can get the carbs and nutrients your bod needs from GF flour’s
And it really is all about reading labels!!!!!
Source: http://www.wheat-free.org/wheat-free-flour.html
“And it really is all about reading labels!!!!!”
Yep!
And my suggestion to Carol was just to stay away from these foods 100% just until her body heals.
I think that is great advice because e experimenting with GF as you say, just prolongs the agony.
Thank you very much for your response GD, I will definitely take your advice. For now on until I can comprehend this disease, I shall eat only fruit , veges and natural meats, if this is going to make me better. I do agree with you, when it comes to buying Gluten Free meals from the supermarket, they are highly priced and misleading. I do all my own baking with the Healtheries Gluten free Baking flour, so i do get to eat my yummy carrot cake with walnuts, chocolate cake, banana cake and yummy biscuits that never stay together but good on my tummy when i am feeling so hungry and dont know what to eat. I do agree my body is very damaged and needs to heal. I asked my doctor how long it takes to heal my intestine, she said it will be healed already which i think is a load of hogwash, now reading your blog, has given me excellent insight, I want to live, I have 3 sons to care for, they are my life, so i will win this battle… Thank you once again 🙂
The intestine can take years to heal. It all depends on the damage done. Hang in there. It gets easier…I promise.
This post and these comments make me wonder if it’s even worth staying on this diet. Seems like it’ll just get worse, no matter what I do. How long will it take before I stop feeling terrible? Months? Years? Or maybe I never will. Not only is gluten EVERYWHERE so there’s always the risk of cross-contamination no matter how careful you are but now I have to worry about developing other conditions/diseases/food intolerances too? Isn’t that the whole point of following the diet in the first place?!? If I’m going to be sick and miserable and alone either way, I’d rather eat what I want. I was doing all right before but now I’m just…broken.
Please hang in there Brianna. It’s easy to get caught up in the negativity, but honestly, it’s not all bad. Not sure how long you’ve been gfree, but it can take some time to begin to heal. It took me a few years.
It gets better…I promise.
Well I have been totally Gluten Free now, since Oct 2012…I have been in immense pain in my intestines and bladder,went to doc have a temp, blood pressure up, lost more weight. Had bloods and urine tests, doc sent urine test away for urgent analysis. I woke again this morning in pain, tried to tidied house but dont have the energy also caused me to sweat profusiously, have only been able to drink ensure(meal in one) made up with water as i cannot stomach Dairy. Since I have been diagnosed and gone G/F I have been so ill and the pain is so severe. I hope the doc can find the problem or just to give me some painkillers so i can actually do some household chores. My energy levels are below 1, my brain isnt functioning properly. I wish it didnt take so long to heal, I hurt everyday. I know once they figure out where the inflammation is i may start getting better, well i hope, but i wish i could have an intestine transplant, I have always been a happy go lucky person but since the diagnosis i cry more than laugh …..
Thank you for the forum. I have plenty of time to read through the comments but at this moment I am too tired to focus on the discussions, I have just skimmed thru a dozen. In the dozen that I have read, no one mentions the rashes, the constant hives, the migraines that I get with each non food I now know that I cannot eat all of the sudden. A few years ago, I started complaining about feeling ill every time I ate. I have had constant migraines since the age of 5. I started peri-menopause about 3 years ago and am now 47. Peri-menopause in itself is a hellish ordeal, but not being able to eat food that I have always eaten has put me over the edge. I continue to say, “throw mama off the train”. I feel that I cannot have one more health issue plague me. It would be great if I had health insurance; the first thing that I would do is have a full hysterectomy to help with the constant migraines…but to find out that being allergic to gluten, soy, dairy, nuts, bananas and who knows what else are actually causing most of the migraines, It is like COME ON. I am starving. I used to eat frozen processed soy meals on the go or Trader Joes Tofu Bars…now I cannot even eat a slice of bread with peanut butter. Who has the time to continuously cook food from scratch, MY BOYFRIEND…but he is able to eat normal food. I said that I would never date a guy that had a better body than mine, (and now or be mentally and physically fit with energy), but he is able to keep up his figure and is healthy, happy, lots of energy…I have been sleeping 20 hours a day trying to figure this friggin disease out. I know that once I find a job, I will be able to focus on work instead of the itchy hives on my head, back, stomach, elbows, knees, ankles, butt, crotch…and why did it happen so fast. The best part of this is that I was diagnosed with eczema which cost me over $1000.00 for the creams and prescriptions that I am also allergic too. Luckily, CVS took back the $400.00 prescription for my face.
Any advice on how to soothe the itchy rashes, or is this just me?
Well after going to accident and emergency with excruciating gut pain, the doctor has now diagnosed me with irritable bowel sydrome, yay….. I am starting to get used to the bloated belly and oh when i get to pass wind it feels like heaven, I am still stumped why i am still unwell as i am gluten free, i cook all our meals,bake cakes and when i shop i take great care at looking at the labels…But yes Kristin i get the itchy rashes, hives under my armpits or my belly, they just occur and its so not fair…I hate Celiacs and now IBS too, but i am thinking positive. I wanted to take my 3 boys fishing yesterday but I had my monthly vitamin d tablet it makes me pee like a fish, tummy swell etc but my body needs it so i am just trying to cope with the side effects, so i had to say sorry and sent them off swimming. Today i feel a little better so My boys and i are GOING fishing, I think the exercise will help with my intestines…I know they are very inflammed but there isnt any pills that actually help but i have been told probiotics are good and you can get lactose free ones…. The food issue is really hard, i too am lactose, dairy intolerant, i eat things and come out in rashes or feel just damn right yuck…as i am healing i wont touch any dairy food just plain old fruit, veges, meat nice natural food. I asked my doc for a allergy test she said they dont do them anymore as the health board wont fund it…I am lucky to live in New Zealand as we have free health care…. Good Luck all celiac sufferers i know exactly how you feel
Thank you Carol for making me feel so much better…NOT, big smiles…I feel for you…even though my children are adults now and still depend on me for safety and comfort, I do not have to entertain them, phew!!!
Unfortunately, prior to my down fall of this mess, I was allergic to all citrus type fruits, so I get to add that to my list, and after my last salad 2 days ago, I am also concerned about fresh veggies, OUCH!. After having a horrific head of hives all day yesterday I quit eating. This morning, my diet has been vodka and bloody mary mix which seems so strange to me that I can tolerate it. Prior, I always thought that I was allergic to tomato soup and tomatoes…So, why my body at this moment is able to tolerate this, I am not sure. I do know that I woke up with the same type of red ant burning rash around 3am this morning on my ankle, the same one I had on my head prior. Why would this rash spread from my head to my ankle but nothing in between. Belly rash is still present.
Tomorrow, I am going to stop feeling sorry for myself and go on a water diet to cleanse my body.
I am confused, because, I rarely have cramping, always constipated, and am happy when I finally have a diarrhea episode.
I am going to spend the money to be tested for allergies. I will let you know what happens. I need to make the phone calls to get it done.
AND, is their a link to say exactly why this is happening to me at the age of 47?
I need to be healthy, happy, positive, energetic, in control of my life…
Being weak is not the answer too this puzzle.
I started becoming allergic to everything in my 30s. Apparently, it can happen at any time. Personally, I wouldn’t waste my money on an allergist or allergy testing. If I’d listened to the allergists I saw, I’d still be covered in eczema and suffering the effects of celiac (I was also sternly told that I “couldn’t possibly have a problem with gluten” by an allergist a year before I was diagnosed with celiac by another doctor.)
Kristin, a hysterectomy is likely not the answer to the migraines. I had to have an emergency hysterectomy some years ago, and had an 8-month long migraine afterward. (No, that’s not a typo. I was in constant pain. They couldn’t get the hormone replacement right.)
I had intractable eczema and used to itch violently all night, all over my body, even in places that didn’t have rashes, for years. It turned out it was all food related. Nightshades (tomatoes, peppers, potatoes, etc) were the big culprits, along with citrus, corn, nutritional yeast, nuts and strawberries. (It was explained to me that I might not actually be allergic to the strawberries–apparently, they actually have histamine in them. Or at least that’s what a doctor once told me.) Dairy, peanuts and soy cause even more serious reactions (my throat swells up too). The best way to figure it out (and a doctor actually even told me this once too–the one who diagnosed my celiac) is through elimination diets. When you control all the ingredients you eat, when you add back in an offender, you’ll know. I find that the reaction and the itching will get worse overnight, often even a few hours after eating the food.
I’ve found that sometimes my sensitivity to things will let up a little bit, and, to my surprise, I’ll tolerate, say, corn again. But it has not lasted. The corn was a real sadness for me. For a while, I started getting away with eating gluten free corn flakes again. I was thrilled! But then suddenly the eczema and itching came back. Violently. Nothing is worth itching that bad for. No more corn trials for me. You couldn’t pay me to risk anything with a tomato.
It is not easy. I’ve been on a restricted allergy/celiac diet in one form or another for at least 15 years. And I hate it. Every day. I hate to cook, and I resent being chained to the kitchen and how difficult it makes my life in practical terms. Food is rarely a pleasure anymore–it’s just so damned hard and tiring to get it on the plate! But compared to suffering the way I did before… well, there is no comparison. I’d live on liquid formula for the rest of my life it meant I’d never itch and be sick like that again. I don’t itch like that anymore. Never. Unless I inadvertently eat something I shouldn’t have. I actually find it astonishing how connected the rashes and itching were to specific foods. (I won’t even mention the celiac aspect and the GI problems…!)
Don’t expect a doctor to help you with it, though. They are criminally ignorant when it comes to nutritionally related ailments. It’s a long, frustrating process to get it under control, but you can get there. I’ve found that the hardest part isn’t the food. It’s other people who make it more difficult and do things to undermine you taking care of your health.
Good luck to you. I know it is incredibly frustrating.
E.J.,
Thank you for taking the time to write. Every word you wrote is how I feel now. Especially the last sentence of how friends and family are having a horrific time with me all of the sudden being just plain cranky and tired. During the Super Bowl Party, the hostess was making a huge issue that I was not eating anything. I had ate prior to going. Their were probably 50 people in the kitchen, living room and dining room and she noticed that I wasn’t eating! I had her put her hands over my “over sized” silk shirt and said feel these bumps and than ask me again why I am not eating. And you know what else just blew me away…I am a small person; Miles, one of my boyfriends friends came over to me and said you know that when you where over sized shirts it just makes you look fat!
Okay, I wish everyone in the world that does not understand this disease will get this disease.
Luckily for me, my boyfriend is the most kindest, wonderful, brilliant Scientist who is going out of his way to help me tame the symptoms.
My daughters are not being as understanding. I really feel that both of them also have gluten allergies and I am sure that my 22 year old has soy and gluten allergies.
Thank you again for sharing your story with me. Kristin