A month or so ago, I was in the midst of a pretty crappy stretch health-wise and went all-out to find a cause and a solution for my health woes.
Truthfully, it’s been up and down since my diagnosis in 2007 and I simply just wanted to feel “good”.
In addition to going to a number of doctors, getting multiple tests and spending a boatload of money, I received a lot of awesome advice from the gluten-free community with a multitude of suggestions. To all of you, I am grateful.
But among all of the suggestions was an email from “Monica” (not her real name) that offered a completely opposite viewpoint; namely that we have celiac and feeling shitty is just the way it’s going to be at times. The email was so well-written and really struck a chord with me.
Please read it below and let me know what you think.
Should I stop trying to find the holy grail and accept my health as it is?
Is this simply as good as it gets??
Hey there Gluten Dude….
I wanted to write something on your blog post today about your test results – but as I appear to be of the minority opinion… I don’t really want to hear again that I should be continuing to test. I tried to express my opinion about this once before – but while I know everyone is just trying to be helpful….I just don’t need to hear it again. So, I will offer you my opinion here.
I am absolutely of the opinion that we have Celiac Disease …it is here to stay… and this is the way we’re going to feel. Period. I have gone through a multitude of tests as well…. all kinds of blood work and scans and have seen multiple “specialists” (but, no there are no Celiac specialists near me.)
They did end up finding a thyroid issue – which I thought I could blame ‘all’ my issues on, but no. The doc told me I didn’t even need to be on the thyroid medication anymore unless I try to get pregnant (which is a whole different topic) because it was such a ‘slight’ issue. Apparently it was just temporary thyroiditis and while it ‘may’ flare up again – it wasn’t going to be too much of an ongoing issue. I literally cried in my doctor’s office when she said that wasn’t my problem – because I was banking on that being ‘THE’ problem that I was going to be able to fix. [sigh!] I even had to endure a 5-hour barium swallow x-ray procedure once. Hey, I figured – I can deal with this as long as they find ‘something’. But, again – there was nothing to find.
Sure, I’ve been told to take probiotics….and I’ve been told to take vitamins. Yep – been there, done that ….don’t feel any different.
So, in all honesty – Dude, I’m done looking. I made that decision about 5 years ago and I’m happier for it. I still have stomach issues of some sort nearly every day (bloating, cramping, etc.) – but I deal with it. I am still tired….but I work around it.
I have just learned to accept that this is who I am – with Celiac.
Now, I see that people are questioning your & Mrs. Dude’s kitchen – but i would venture a guess that you guys are pretty damn careful when it comes to your glutenous surroundings. So am I – and I am 99.9% sure I am not getting accidentally glutened. I have been doing this for 10 years – I know when I’ve gotten glutened and when I haven’t. Plus, I must have healed so well on the gluten-free diet initially – that my 2nd doctor couldn’t even confirm I ever had Celiac in the first place (without reading the pathology reports from the first biopsy). And, I still feel way better than I did at that point.
Sure, I could give up soy, eggs, all grains…etc., etc…. but my stint with taking dairy out of my diet – was for nothing. So, I would rather ENJOY my food and feel … well, like a person with Celiac …. than eat bird food – and still feel like $%^#. I want to enjoy life as much as possible….. so, this is what I’ve decided to do.
I have also received the same response from doctors – wow, you’re only 35 and your medical chart looks like you’re an 80 year old woman. ;- They threw so many drugs at me trying to ‘fix me’ – it was ridiculous. About 2 years ago, I decided to stop taking ‘all’ medications – and you know what… I feel exactly the same as I did while taking the medications – if not better.
I also realize that since I was in a crappy marriage at the time… I kept thinking that if I fixed my health problems, the marital problems would be fixed as well. So, I put a LOT of stock into “fixing” myself. So – when there didn’t appear to be anything further wrong with me – other than Celiac – then, I realized the problem may lay elsewhere.
I finally moved on from that marriage and I am very happy now with my new husband. I have the exact same symptoms now as I did back then – but I can “live life” with them better now that everything else has fallen into place. It seems like you and Mrs. Dude and the dudettes have a pretty happy life right now – other than your health issues. I guess what I’m saying is….. even though I am on my 8th week of laying in bed with my back problem…. I STILL say – “It can always be worse”.
Put your extra thoughts into your beautiful children (since some of us don’t seem lucky enough to have them….) and less into “what’s wrong with me”.
As far as I see it – there is nothing wrong with you, Dude. You’re a happy, healthy (relatively!!), thriving, popular & successful Dude…. with a loving family and supportive friends. Can’t ask for much more than that.
So sorry this has gotten so long but back to the topic at hand. I am sure all the Celiac specialists out there would say keep testing, keep testing, keep testing…. but, what if there is nothing to find – and all you end up being is a human pin cushion?? I just don’t know if it’s true that “if you’re eating a gluten-free diet – you’re as normal as anyone else”. Seriously??
Instead of trying to be a normal person’s “normal” – I have decided to live with what appears to be “normal” for me. An important lesson I learned from my previous marriages is that I need to stop being something I am not…. trying to be what someone else wants me to be – I just need to be ME. The right people will love me for who I am (Celiac and all).
I am not necessarily saying quit all testing immediately – you have gone this far, you ‘may’ want to investigate one or all of the specialists that your doctor recommended – but, at the end of that (which I am also assuming will all turn out ‘normal’) …. you may want to decide for yourself what I already have – this is me…this is life…. now, I’m just going to live it.
I wish you well – and I wish I could say ….there is a “normal” life out there beyond the rainbow and to just keep striving for it – but I truly believe this is ….”as good as it gets”.
Wow. I can’t say I really disagree. I gave up gluten because that is what seemed to work…or at least 90% worked. I decided that I wanted to enjoy food and not look at food as medicine. I didn’t want to eliminate all grains (and put my family through that) and find that it “sort of worked.” I feel pretty darned good most of the time. True, my bowels are sometimes in an uproar (literally and figuratively) but 90% most of the time is pretty good and I’m willing to go with that. Is this as good as it gets? Possibly not, but we all make choices. I have lots of energy. Since giving up gluten I can go about my daily business. I would rather say, “It could be a whole lot worse,” than “Is this as good as it gets.”
It is all about attitude Carol. Sometimes I just try to will myself to feel good. It works at times.
I’m from the “it could be a whole lot worse” mindset as well. Although I’m not happy with still feeling ill after making these diet changes, I have to believe one day I’ll feel better – or at least get used to feeling like this. I was the human pin cushion for the past 3 years. I feel like I had every test done 3x by different doctors without answers. This year, I “gave up” and started seeing a less invasive naturopath – so at least I don’t have any more terrible medical procedures (although I’ll miss all my friends at the Mayo clinic dearly). Perhaps this is the way to feeling better. If this doesn’t work though, I may have to take some time off to rebuild my patience and start fresh. Until then, I’m accepting how I feel and learning to not feel sorry for myself!!!
Totally agree Erica. This is not about self-pity. I believe most celiacs hate talking about the disease, their food and their health.
Very well put “Monica”. That is a great way to look at things and I agree with you 100%. Thank you for sharing!
I can dig this. I got worried a couple months ago because I had seemed to backslide a little – no energy, some weird stomach pains – and when I went back to my GI, she told me that celiac is an ongoing thing, and there are going to be rough stretches.
I was a little disappointed, I stupidly thought going gluten free would magically make me feel like a million bucks, and for the most part it is leaps and bounds better than this time last year, but still. Some days are just sucky. In the words of my doc: “Welcome to being a human being.”
“Welcome to being a human being.” Yep!
Thank you for sharing this, whether other celiacs agree or not, it eloquently brings to light the struggles of living with a chronic condition.
I agree 100%.
While it’s nice to have a diagnosis, I’m pretty much set in the attitude that, I have coeliac disease, I’m NOT going to feel 100% all of the time, but I feel a hell of a lot better now I’m not eating gluten.
Sure I still have my ups and downs and mystery upsets which seem to originate from no where, but to go back to how I was feeling before diagnosis? No chance.
This is my second year as a celiac. I recently told my doctor at my check-up that I had gone through a bad stretch and thought of calling her but took Citrucel to get me through it and now was fine. I told her I feel better than a year ago because I realize now that this is the way it is. I think this is what you go through with general aging symptoms – what is this?? Then you get used to it and move on. There’s always a worse alternative.
I agree with most of what you say Monica, but my children are teenagers and since diagnosed late last year are still having issues.
They are not ready to give up nor am I in this Celiac journey. My teenagers are willing to try eliminating some different tthings to see if it helps.
I do not think it is as good as it gets for them.
They have decided to try the Paleo diet for a few weeks. This eliminates many food items that are questionable for those with Celiac Disease..
If it does make a difference then we may add one questionable food item at a time and see if we can figure out what the cuulprit is for them. I suspect it will not be the same thing for both of them.
The journey is not the same for every person with Celiac Disease.
I understand and respect why you have chosen to feel this is as good as it gets for you. That is your choice.
I do not think it is the answer for everyone and feel that all options should be explored if you are feeling so bad that you are down for the day or longer. That is not normal even for a person with Celiac Disease.
I posed the same question to my husband this week. I’m ready to give up on testing (next is endocrinology and a second round of rheumatology), but am going to keep going for him. He doesn’t deserve to have a lifeless, chronically sick wife—if we can keep making changes that help even a little, then I can’t give up. If I can minimize problematic foods (dairy and other grains, seeds or starches with similar “epitopes”), try Eastern medicine, relaxation techniques—anything—I’ll do it.
However, my specialist at University of Chicago Celiac Disease Center did say, and I quote, “For some, peripheral symptoms such as fatigue and joint pain never go away, and we don’t know why.”
I seriously think that environmental exposure to gluten and its affects on the adrenal and lymphatic system should be studied in great detail. There is definitely a link there!!
I find it very interesting that so many of us have back problems. And most in the lower back (me included). For me, it also corresponds with exposure to gluten, along with knee and elbow pain. And guess what? There are lymph nodes there in all those areas! It’s not just the gut that reacts, and it’s not just full-on ingestion of gluten that can be a trigger! I truly believe this.
Yowsa…I have back, knee and elbow pain too!
How about tendonitis ? By coincidence (or not) I developed it in my wrist last year. at the same time celiac disease reared it’s ugly head.
Gluten Dude, Google nightshade veggies and Celiac.
Wow Jen! I could have written this post exactly. Most days I’m at the point of saying “I guess 90% better is where I’m going to be. Its better than before. I guess I’ll just stay here.” My husband is the one that is pushing me to continue. I’m getting a full blood panel tomorrow to check for many things, but specifically my thyroid – per his insistance!
Like I said, most days I feel like this is where I’m destined to sta – at 90%, but there are others in which I get a charge of “I’m 28! I shouldn’t feel this way!” Whats odd is that for years I noticed the ‘big’ symptoms – GI issues, nausea, vertigo, skin issues, etc. But now that most of those have been cleared – with the exception of after an accidental (read cross-contamination) exposure to gluten, I’m starting to notice other symptoms – like joint pain, lower back pain, achy skin, buggy skin (more on that in a moment), and twitchy muscles. Truthfully they’ve been there all along, but have been ignorable. Now they are feeling front and center and hopefully will point me towards another diagnosis or solution! (hence the thyroid check!)
Buggy skin – This is a wierd one – does anyone else experience this? It feels like there is a bug biting me, so I will look at my leg (or wherever I feel it) only to see nothing! It feels sort of like a tiny needle going into my skin. This happens many times throughout the day and in all areas of my body. Occasionally I’ll have a period (an hour or 2) where it feels like the ‘bug’ is jumping all over my body biting my arm, then my leg, then my arm again, then my neck, then my stomach, then my leg, etc. I look like a crazy person trying to ‘shoo’ it away!
Becky, I know just what you mean. So many of my symptoms have resolved, but the remaining ones have been extremely difficult. And like you, I’ve had most of these since for several years—they’ve just gotten so much worse.
I don’t have buggy skin, but I do have prickly or surging skin and muscle spasms and twitches that are pretty annoying! 🙂 I think what also bothers me about these symptoms is that I know there’s some underlying damage or inflammation causing it and that bothers me.
WOW! It is SO interesting to read the different paths that people choose. I have to agree with the mom with teenagers. If they don’t feel healthy, this should NOT be as good as it gets. One of the hardest things about Celiac Disease is that every single person is unique and different. Symptoms, choices and responses all reflect the individual. In general, my experience is that many older folks who were sick a long time might not heal completely. Middle age (don’t ask me to define that!) seems to fall on both sides of the fence and those in their twenties and younger should be healing completely. So… Here are some bits of research that might be helpful to some of you that are looking for solutions:
http://www.etseq.urv.es/cdmedics/intranet/vse/?q=node/105
http://www.celiac.com/articles/22914/1/Most-Cases-of-Non-Responsive-Celiac-Disease-Due-to-Ongoing-Gluten-Consumption/Page1.html
http://www.celiac.com/articles/741/1/Causes-of-Non-responsive-Celiac-Disease—More-than-50-Continue-to-Ingest-Gluten-Unknowingly/Page1.html
http://gut.bmj.com/content/31/8/883
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263982/
I am a support group leader and have three children (in early 20s, diagnosed in 2005) with Celiac Disease. I am passionate about finding and sharing the positive ways to stay as healthy as possible with this disease.
I totally agree with her. I’m always amazed when people say they are amazed at how up beat I can be with all my health problems. I have another autoimmune disorder that came on/showed before Celiac that, to me, is much worse than Celiac.
When you realize that Celiac is something that can be controlled with “just” food but the other illness is controlled with $50,000 PER YEAR medications, then yeah, Celiac is ‘no biggie’.
Seriously, it’s all in the perspective we choose to utilize.
I don’t want to sound like Polyanna or anything, but I will keep on striving until I feel great again. That is because I was diagnosed 28 years ago, went strictly gluten free from day one, and felt great for all of those 28 years. I was on my deathbed & after diagnosis & diet change I miraculously healed almost instantly. Then my exposure to airborne flour happened 3 months ago & completely destroyed my gut. I am still not normal….I am eating GF, & temporarily dairy free, no roughage, no oil, no spices. I am confident that I will heal again because I have already experienced that.
Hey….I just had a thought. I have the same reaction to canola oil as I do to gluten. Some Celiacs do. So for many years I have been off of canola oil as well as gluten. Maybe that’s why I felt so good before. Maybe those who are still struggling might try going canola free. Just a thought.
I have good days and bad days. My best advice would be, if you develop a different sort of symptom or worsening of symptons, check in with your doctor.
After all, we do develop other illness too!
Funny, I read a lot about people having back pain. That is one of my worst problems. I have arthritis in my lower back and SI joints. I even had to have it treated with a short course of prednisone and physical therapy…..Not fun!
CD really does suck . I’m 10 years in and I still feel ill . I feel like stopping the diet as I don’t see the point spending anymore time on an over rated diet that doesn’t help , but I think that would be a stupid idea and I would chicken out if I tried to eat gluten 🙂
But I find it really frustrating hearing all the gluten free miracle stories about how people were magically cured from pretty much everything after 1 week on a gluten free diet , it should be us Celiac’s who have the miracle health improvement not some random person who goes GF over night :@
Obviously you are not gluten intolerant or have any gluten issues if you abide by the rules of a GF diet & STILL have health problems. Go back to eating bread and having your pizza !! Not worth monitoring your food intake and still feeling like crap. GO EAT BREAD!!
I wholeheartedly agree that each person is unique and must travel this path in their own way and on their own time. I think most of us at one point or another have gone through tons of testing trying to find that specific diagnosis as to why we aren’t feeling 100%. I am a believer that our diagnosis of Celiac Disease is a huge reason why we aren’t usually feeling up to 100%.
I recently reconnected with a friend who is a GI specializing in Celiac Disease and actually has Celiac herself. I am not her patient, but when asking her about this specific topic she replied to me that regardless of adherence to a strict gf diet, we will still experience some remaining symptoms such as stomach upset, fatigue, or brain fog but to a lesser extent that we began with obviously. She specifically believes it to be true for her (and through her experience as a GI) that once our gut has gone through the trauma of Celiac, that people are at risk for ongoing IBS symptoms, but that they should be much better. She admitted that she has persistent fatigue as well. She also stated that she believes that underlying autoimmune conditions, even if controlled, can lead to generalized symptoms as fatigue and brain fog.
These comments from a GI specializing in Celiac rang very true with me and made me feel better about accepting the way that I feel…which is frankly rarely 100%. I wouldn’t classify myself as chronically ill, I just have lingering symptoms that don’t seem to disappear. I can still function in my daily life, I just had to adjust what my normal was.
I think overall, we all just have to listen to our bodies. If your body is screaming that something else is wrong….by all means – keep testing and find the culprit! However, personally the ongoing testing I’ve encountered was just making me feel worse as there was seemingly nothing to find. I am one of those that tries to remind myself “it could always be worse” but, in regards to my Celiac…. I do believe that this is “as good as it gets”.
Gluten Dude, a sincere thanks for posting all opinions on this subject even if sometimes they aren’t the popular ones. Great blog as always – keep ’em coming!! 🙂
You’re welcome…Kristen.
I have multiple issues, and my gluten allergy is only one. I get this. Both responses make sense.
My attitude is this: if I am in small enough amounts of misery to live, and we can still hope for possible improvement that’s good, but I am deluding myself to believe there’s a miracle cure.
I have extensive allergies, autoimmune disorders and genetic problems combined with mitochondrial failure. I’m more likely to die before a magical cure all is found, so I look for ways to enjoy life now to the best of my ability.
Its a bumpy path, with up and down days. Celiac is no more special or important then any other chronic illness (and I’m really sorry if that rocks someone’s boat, but it’s true, it’s just more important to You) and the universe doesn’t give any of us special treatment,
Chronic illness, in all forms, means dealing with being chronically ill. The very first post I wrote at painydays.wordpress.com addresses this, it is sooo easy to get caught up in the chase to be “normal” but how much life do you miss now, by spending all your time looking to, a likely impossible, future?
Summer, girl you are my favorite! You are always an inspiration to me! 🙂 Thank you for all of your posts and for your attitude.
To all with celibacy & gluten/wheat allergies: in my research and speaking to my holistic nutritionist I discovered that arthritis (auto immune disorders including celiacs disease) are triggered in some when they consume nightshade plants such as tomatoes and eggplant. When I eat these items I always have a gut and joint pain flare up. Eliminating these foods has helped me immensely – so I thought I would share. Best wishes for all in your nutrition journey!
Mandi, is absolutely correct. Nightshades not only include tomatoes and eggplant, but ALL peppers and potatoes.As well as tobacco, so if you’re smoking or chewing tobacco, even just an occasional cigar, it can cause issues.
It took me years to take the final leap to cut potato, and it’s in nearly EVER prepackaged GF food product, but it changed my pain levels and inflammation immensely. It’s well worth a one month trial of cutting them all out and seeing how you feel.
Yep…I had to beg off tomatoes after realizing the sauce always gave me a stomach ache. No more bloody mary’s either. Now THAT’S a sacrifice.
I apologize! Dang auto correct – I meant cecliacs not celibacy!
There is a story of two frogs. Frog A is placed in a pot of boiling water and frantically tries to escape to save himself. Frog B is placed in a pot of cool water and the temperature is gradually raised to boiling over a considerable abount of time. He slowly boils to death without even trying to escape.
While we can accept that we may never feel betther than 90%sometimes we experience gradual declines due to reasons other than Celiac. We slowly feel worse and worse until we don’t even realize how bad things have gotten. In a few months or years we’re functioning at 60% or less, but it’s been so gradual a decline that it becomes our “new 90%”.
I will just say I was Frog B. I blamed everything bad on Celiac. All foods seemed to make me mildly nauseated and cause discomfort. I lost weight. I kept a gnawing pain in my side that would ramp up every time I ate. I was tireder than ever due to never really getting away from the pain at night and getting sound sleep. I felt like when I ate a meal the food just sat there undigested. I suffered really bad constipation and began taking Miralax almost daily. The whites of my eyes took on a yellow tinge. .I continued to blame it on Celiac, but that wasn’t the cause. I had an inflamed non-functioning gallbaldder that I only discovered it a couple of years later after a stone finally became lodged in my bile duct. I had become Frog B in a pot of water slowing reaching a boiling point.I didn’t jump out. I quietly accepted that “it is what it is” and accepted my circumstances. It became my new norm.
Change the things you can and accept the things you can’t, but never never quit searching for the wisdom to tell the difference. It’s not always about Celiac.It may be a different illness that is draining your body’s resources. It’s your decision to decide if you need to be Frog A and make a fuss or a Frog B who accepts the circumstances as normal. Sometimes it’s just as good as is going to get. and you need to embrace life with whatever percentage your dealt. Sometimes you need to look beyond Celiac and actively search for something else is happening.
Great discussion here. We’re all unique and yet we’re all the same. As a sidenote, I felt better the day after surgery than I had the entire year prior. I didn’t even realize how much I was bracing for food to hurt until I ate my first meal post-surgery. There was no pain. Nada. I still have bad days and bad weeks, but I for the most part I do bounce back to at least a 90%..
She’s right. This is who we are now, redefined. We’re not dying from it. We’re surviving it. And that’s ok 🙂
Wow, this post greatly concerns me. I would like to believe that we can indeed feel better and need to be very proactive in finding out what exactly is causing us to still feel like crap. I am passionate about this because I spent so many miserable years going from doctor to doctor just to get my Celiac diagnosis. Then I spent just as much time finding a thyroid doctor that knew how to treat patient symptoms, not just the numbers on a piece of paper.
I am also greatly concerned about what the doctor told “Monica” about her thyroid. I would love to know a little more of the details because this is an area that I have great patient knowledge in. I feel that my thyroid makes me feel far worse than the Celiac and it has taken a long time to find what are the right levels for me and the right medication. So many people are given the same prescription by doctors and it’s usually the wrong one (my opinion) There are only a couple of kinds of temporary thryroiditits, one is post pregnancy related and the other is due to a virus or infection. If her doctor thinks it might flare up again I would not think it would fall under the temporary category. Also, “slight” level increases can cause SEVERE symptoms. Even “slightly” off levels need to be treated. And one doctors version of “slight” might be another’s version of “severe”. I know this because for years other doctors kept my levels are around what is “normal” A normal range is considered to be between .5 and 5.0. They all kept me at around 5 and I felt like I was slowly dying. It was not until I found my current doctor and he put me on Armour instead of Synthroid and keeps my levels at .2 that I started to feel like myself again and can say that it has changed my life. I kept telling doctors that I felt my thyroid was off and how horrible I felt. And they would look at the .5 on the paper and say “you’re fine, the bloodwork says so”
Sorry to rant! I just feel like there is probably and answer for everyone. You just have to know the right questions to ask and where to look. Don’t settle for feeling like crap. It’s not what should be normal for us. Look beyond where you stand.
I think I will do an entire post about thyroid issues and medications because it is so closely linked with Celiac and has so many overlapping symptoms.
Thanks for listening!
That should say 5 instead of .5
First of all, thank you to all of you who offered supportive words of understanding. I felt comfortable sharing my personal story with Gluten Dude and I am happy that he wanted to share it with all of you. Everyone is entitled to their own opinion…. this was just mine. It is absolutely true that everyone’s journey with Celiac is different. I just want to clarify that I don’t feel “crappy” all the time – I just have some ongoing symptoms. A few have indicated that anyone with Celiac who follows a strict gluten-free diet should feel as normal as anyone else. For many years, I fought through testing to get back to ‘normal’ but was unsuccessful in ever finding it. I tried everything from elimination diets to keeping a food journal. So, I finally decided to accept that THIS is the new ‘normal’ for me. When I was sick prior to the Celiac diagnosis – I was probably at 50-60% (and was on leave from work for long term disability). It took me probably 2 years to finally get to a place where I felt “better” – and now I can confidently say I stay between 85 to 95% on most days. From where I once was… I am happy to take that %. I have other issues that may or may not be related to Celiac including lower back pain (I am currently on week 11 of being in bed with severe back pain including a herniated disc and inflamed SI joints that refuse to stay in place). I also have knee pain (which doctors have attributed to arthritis), migraines, and allergies (food and environmental). My recent MRI for my back also showed gallstones which I will likely have to deal with in the coming years….so, I always have that to look forward to. Related? Maybe – or maybe not. But, I wanted to make it clear that I truly feel that if you or your children don’t feel well – then, by all means keep testing. I was just offering my point of view as to why I decided to end my quest for the holy grail.
Gluten Dude – thanks for sharing my story… it’s always good to strike up a dialogue for everyone to share their point of view and your blog is a wonderful place to do just that.
Dee – I love your frog analogy! 😉 And again – I absolutely agree…. if you feel your body is telling you that something is wrong – please go to a doctor and find out. I just know that ‘this’ is my body and this is how I’m going to have to live from now on. I’ve accepted that and feel so much happier for it.
Christy – I really appreciate the concern…. I had been proactive about my additional symptoms for many, many years – but while enduring testing from many different doctors there was just nothing further to be found.
***Note to anyone reading this post… I am going to offer Christy some very specific info re: my thyroid issue, as she requested. I considered sending it to her in a private message – but felt that I should post it in the public forum in case anyone else is going through the same thing.***
Regarding the thyroid issue, it was probably about 3 or 4 years into my Celiac diagnosis that I wanted to find an answer to why I always felt tired and run down health-wise. It was my GI that finally opted to test my thyroid after numerous intestinal/digestive tests came back inconclusive. My TSH level had spiked to over 8 (understanding the ‘normal’ level would be 4 or lower) and a ultrasound of my thyroid showed it enlarged – so, he sent me to an endocrinologist specialist. The endo doc tested me again and said that my levels had already come down to 3.75 – so I was ‘fine’. She said I must have had temporary thyroiditis and that it shouldn’t be a problem long term. I was still obviously concerned about the 8 level (even if it was temporary) – so I convinced her to put me on at least a small dose of Synthroid. She agreed to 25 mg. I was on that dose for about 2 years. Then, when I went back for a check-up – my levels had dropped to 1.75 – so, she said that was low enough and to stop taking the medication. She also told me at that appointment that she thought I was going through depression – which was likely causing the fatigue and that it wasn’t anything to do with my thyroid. However, that is also when she told me that if I ever were to try to get pregnant… I would need to go back on Synthroid. At the time, with my ex-husband I didn’t want any children…. so I didn’t give it much thought.
Fast forward 5 years and I was divorced and remarried and I thought it might be time to start thinking about having kids. Six months after not having any luck, I went in for a check up with my doctor and I specifically asked if the thyroid could be causing me to not get pregnant (noting that my original endo doc had said to go back on Synthroid if I were to get pregnant). The ob doc said not to worry about it – that if I were to get pregnant they would keep an eye on the thyroid levels, but after more hesitation on my part – she finally decided to go ahead and get a base line level at that point. My tests returned still at only 1.75. Turns out, I got pregnant that month. I was so excited. However, at 8 weeks… it wasn’t meant to be – and I had a miscarriage. It broke my heart …and more than anything, I wanted to know ‘why’. My first thought went to the thyroid issue. I had my blood levels checked again and as I expected in that short time I was pregnant, the levels rose from 1.75 to 4.25. So, my primary doc agreed to put me back on Synthroid – but again at only a 25 mg dose. I thought maybe this would ‘fix’ my problems …..yet again. But, fast forward another 2 years and I haven’t been able to get pregnant again.
I will also say that on or off the small dose of 25 mg – I don’t seem to feel much different (which for those unfamiliar….is a crazy small dose since the smallest pill they have is 50 mg – so I have to cut mine in half!) Since being back on Synthroid, my levels have gone back down to 1.75 – but I hadn’t tested in about 1.5 years. I was just at the doctor recently for my back pain and I convinced him to retest me for thyroid, cholesterol, vitamin levels, etc. So, we’ll see where they are at again next week. It seems pretty obvious from the doctors I have talked to about my “thyroid condition” that they believe my levels are low enough and well controlled that they shouldn’t be causing any further issues. So, believe me….. I know all too well the response of “you’re fine, the bloodwork says so”.
Maybe – just maybe I will get a different response from my tests this time. But, even if I do get an answer to my thyroid issue after this many years…. I don’t think it’s going to ‘fix’ my ongoing stomach symptoms. I have been told that I have IBS as well as Celiac – and that I am just going to have to ‘deal with it’. Regarding the cramping, my GI once told me that I must just be more ‘sensitive’ to the pain than ‘normal’ people. Great….there is that ‘normal’ word again. Some people say that my ongoing symptoms must mean I’ve been glutened….but I honestly don’t think so. I can have those symptoms after eating the same things at home that I’ve always eaten. I truly feel that this is just my body… and I would just rather focus my time now on living with what I do have – rather than constantly focusing on what is wrong.
So for now, that’s it… this is me…. with Celiac.
Thanks again for everyone’s posts… I appreciate them all. 😉
“Monica”,
Thank you so much for taking the time to reply back and to even make it public. I know it’s hard to put your personal medical stuff out there but hopefully it will help at least one other person.
I am sorry if I seemed at all “judgy” about what you have shared with us. I believe that every one of us has the right to feel and believe what we do on any part of our journey. I just felt instantly passionate because I have been through such similar issues as you and had doctors telling me the wrong things for soooo long.
I would love to chat with you more privately because I hate what you are currently going through with not being able to have a baby (yet). I have been there. Miscarriage and all.
I appreciate you sharing your feelings and your own journey. I know it’s not an easy thing to do. And I can see that you have already reached so many others that feel the same way and are in the same place.
If you are open to “chatting” a bit more, my e-mail is christy@trulymadlyfreely.com I will leave it up to you 😉
Hi Christy – thanks for being so caring about someone you don’t even know. That’s what I love about our Celiac community – we have this deep connection to those we don’t even know yet because we can all understand and empathize with each other on a level that many others can’t. I will take you up on that offer to chat privately. Thanks again!
Guys, I’m serious about the canola oil thing. Canola oil was making me sick, the same exact reaction as if I had been glutened. So I did the research on it years ago, & my suspicions were correct. Even though it has no gluten, some Celiacs will react to it. I have met a few Celiacs who also react to it & they have also given it up. I am thinking maybe many more Celiacs have this reaction to it & they may not know it. Lots of gluten free products have canola oil in them, I don’t eat any of them. I noticed a difference years ago when I gave it up. To tell you the truth, my research on canola has turned up a lot more info on it as well…it is not so healthy like they say. Anyway, if you are following a GF diet & being careful of CC issues & still have no explanation for feeling sick (Celiac sick)….then it might be worth going canola free to see what happens.
Thanks Dude. I now know I’m not alone. I completely gave up on the medical community 6 months ago. All the testing, pills etc..was for nothing. BUT! I did find out that I have a severe vitamin d deficiency and I am taking prescribed “mega doses” of d. I do actually feel better for a couple of days after taking it but my body is just not absorbing it. I’ve got osteoporosis and I’ll bet anything that I have a vitamin b deficiency as well. I’ve got all the same on going symptoms as “Monica”. I thought maybe it was just me and that I must be missing something even though I’ve had every test under the sun. I feel the medical community failed me. I wish there was something they could do for us but it looks like there isn’t .
I might try Traditional Chinese Medicine next. It’s the only thing I haven’t tried for some reason. It’s worked well throughout my life for various things, even carpal tunnel! I’ll let you know what happens.
I think everyone needs to do what they feel is best for them. Good luck to everyone! I’m glad we have Dude to share with!
I think one of the issues is a general lack of faith in the medical community. We’ve all had and heard horror stories. The answer to our issues may be a simple thing, but finding a doctor to discover it is anything but.
Why in this day and time is it STILL so hard to get physicians to recongize gluten is creating huge health problems??? They finally have respected researchers worldwide stating that it is behind many health problems even with the absence of a Celiac diagnosis and backing up the data with peer-reviewed published studies in medical journals. Primary care physicians are on the front lines and, for the most part they still refuse to connect the dots of multiple health problems with gluten consumption..
This is a timely blog post from the founder of the Charlotte, NC ROCK and Gluten/Allergen Free Expo who has taken the mission to help those with gluten-related illnesses not only in Charlotte, but across the country..
http://glutenfreekidsrock.blogspot.com/2012/07/doctor-give-me-news-why-are-celiac.html
I agree Dude & Dee….
It is scary knowing that there are so many physicians out there that practice medicine and are supposedly there to “fix” what ails us – but we have all heard horror stories time and time again …and many of us have experienced them ourselves. I have also yet to find a knowledgeable doctor in Celiac. My diagnosing doctor was an idiot. My 3 GIs since then – ‘know’ what Celiac is….but, basically were there to say “Oh, you have Celiac – stay on the gluten-free diet and you’ll be fine.” That is the extent of their knowledge. However, I know most people will say…. well, keep looking for one . But, there is also one nasty reason why I can’t…. INSURANCE. I have had a great job working for the government for the past 8 years and I get decent health insurance provided to me at a reasonable cost (although the ‘cadillac plan’ is out of my reach) – however, I must follow their rules and decisions to a T. I can only see the GI that is covered… I got kicked out of my endocrinology specialist’s medical group due to my insurance…. I had to wait 2 weeks to get an MRI approved for my back… I was only given the ‘green light’ to visit one physical therapy location… I am only allowed 40 chiropractor visits in a year (which sounds like a lot, but I used that up very quickly in the past 11 weeks with my back issue)….. I have only one option for an orthopedist (and it will take over 6 weeks to get in). As you can see, my options are severely limited. So, in theory – as much as I’d like to keep searching for answers…. the medical community and insurance companies are holding me back. Again, that’s when I came to the realization that the only person I can rely on is me…. so, if they’re not going to help me… I’m taking the reins and taking control of my life. I’ll just do what I can to make myself feel better.
Ooops, my mistake…. (brain fog!) – I am not even able to see an orthopedic doctor – NONE are covered by my insurance…. I am only able to go see a neurosurgeon. So, once again – I am not even able to be referred to the type of specialist I actually need to see. Talk about frustrating.
The only thing more frustrating than our medical community is our insurance industry. A bunch of crooks.
I have the exact same issue, Monica…government insurance. I’m covered IF I use a short list of primary care physicians (I’m on number 4 in 5 years) and can see a specilist only IF they refer me. There is an even shorter list of specialist possibilities and they must be affiliated with only two of the hospitals here.
I just paid out of pocket for a dermatologist to biopsy a spot on my lip. There was a chance of malignancy and I wanted to go to one of three physicians here who are certified in the MOHS micrographic surgery to minimize scarring. Turned out I didn’t need it after all, but there was NO way I was letting a generic dermatologist start cutting on it due to where it was located. FRUSTRATING!
My SIL has a thyroid issue. Her weight goes up or down depending on how the thyroid is and how she is reacting to medication. She’s had half her thyroid removed since I’ve known her and she goes between looking anorexic to looking like she loves to eat. She has swung from a size 4 to a size 18 and it’s all apparently based on her thyroid.
However, my sister and I learned from her neighbor with a thyroid issue that those with said issue are to AVOID SOY. She said that in and of itself can wreck havoc on the body/thyroid. I wasn’t sure of what she said, so I researched it and found the same thing.
SIL does not avoid soy, because “it’d be too hard”. I also think she’s celiac. SHe has had various issue with her digestive system since I’ve known her. My hubby, who is very protective of me and supports me eating gluten free, refuses to think that his sister could also have Celiac (I wonder if that’s because then he might be at risk?) She’s had ‘obstruction’ and diarrhea and constipation and I always think, “seriously, why has her doctor NOT checked her for celiac?” and then I think, ‘duh, ’cause small town doctors don’t think outside the box and most doctors don’t think outside the box for celiac”.
I have noticed that many people with Celiac also have issues with their gallbladder. I have a pain in my upper left side where the gallbladder is if I eat “fatty” food —for me, this means fried foods or oily foods. I made fried fish at home one day with tapioca flour just like Tyler Florence’s recipe and I was soooo sick afterwards. I’ve just accepted that I cannot eat fried foods and really, is that bad for me?
Neither hubby nor myself can handle soy oil. We scope out the allergen menu on our smart phones when we dine out. While hubby won’t avoid soy entirely (he loves his ‘real’ mayonnaise) he does avoid soy oil and tofu which gives us both fits.
Part of my problem with this is something that’s never set right with me over the years. Its hard to explain but I think here’s a good example. A few years ago, a former vegan went back to eating some meat and some dairy. Her blog post is no longer available as she closed her website but can be found in the Wayback Machine: http://web.archive.org/web/20110330172725/http://voraciouseats.com/2010/11/19/a-vegan-no-more/. Rather than accepting the fact that her body needs the vitamins from the foods she eats and that the vegan diet couldn’t work for her, she was told she just wasn’t trying hard enough and should do X, Y, and Z and she’d be a better vegan instead of a demon animal eater.
Its the same thing I see in the celiac community as well. Person isn’t feeling right, then they are told to do all sorts of things, from getting a battery of medical tests to removing/adding all sorts of foods from their diet, to doing things that probably aren’t even a consideration in the actual environment of the disease.
What ends up happening is that we’re all battered, bruised, and beaten down. We’re never “right” because we’re told if we add this “one more thing” to the battery of things that we already have to do to survive. And when we add that “one more thing”, we’re still not “right” so we’re told to add “one more thing” again. And the cycle continues.
I know I’ve complained on here about being tired and not sleeping well. I recently decided that I would give the screw off to everyone who told me yet another supplement to take, an exercise to do, and all the other wacky solutions (don’t vacuum a day before important sleeping, suck on a lemon before sleeping, don’t eat meat at dinner, only sleep on your side, make the room under 65 degrees, add more blankets, get a pillow with dual sleep zones, do yoga at midnight…) and decide to focus instead of zen with myself. I figure if I do some more meditating that the calmness it brings will help me figure things out, and if it doesn’t, I’ll be so zen I won’t care.
Monica’s message of “normal for me” really resonates with me a lot. Thanks for giving a voice to a minority viewpoint in the community.
Very well stated Connie. There is no right or wrong here. Everybody needs to do what they think is best for them. I happened to be in a place right now where I’m done trying to find something that may not exist.
Connie, as I was reading this I was thinking, ‘right on’ and then I thought. ‘oh um, vitamins’. . . people often overlook vitamins because we are told we should be able to get enough in our foods, if we eat correctly (and even if we don’t, thanks to vitamin fortified everything these days).
However, I heard on the radio a few years ago that Vitamin D levels recommended by the FDA are based upon 1950s or 1960s standards, when more people had day jobs outside and most people didn’t use sunscreen.
I have a friend who uses SPF 50 to go outside for even ten minutes in the sun.
Two years ago she was told she had extremely low Vitamin D levels, even after going gluten free. She’s tired a lot, etc. and was shocked to learn she had such a low level. Since I’m close with her, I asked why, since she has a desk job, doesn’t get Vit D process in her body from the sun thanks to her SPF, and then doesn’t take additional supplements. She was shocked to hear things put in this 1+1+1=3 order, but she realized something too.
We all have to adjust our thinking when we go celiac, but also in other respects that you wouldn’t think have a lot to do with anything.
I was raised to ‘clean your plate’ and that was a habit that took a LONG time to break (sadly, another ten years after leaving home).
Obese people, this article says, have more of a problem absorbing Vit. D.
As a person who was on Prednisone for 13 years, it was important for me to up my calcium and Vit. D before I even took up running or went GF. http://en.wikipedia.org/wiki/Hypovitaminosis_D
From the Mayo Clinic: “Also, individuals who have fat malabsorption syndromes (e.g., cystic fibrosis) or inflammatory bowel disease (e.g., Crohn’s disease) are at risk.” . . . I would think celiac could be considered along the lines of Crohns here, but I could be wrong on that. http://www.mayoclinic.com/health/vitamin-d/NS_patient-vitamind
Thank you, Connie – i agree with Dude… very well stated!! I know I seem to be of the minority opinion on this topic, so it is very reassuring to me to know that I’m not entirely alone in this. 🙂
I’m playing catch up-
This post speaks to me because like so many, I’m weary with searching for why I still feel bad. I’ve been gluten free since my diagnosis over a year ago, I think my family looks at me like: Don’t you feel better yet?
So I keep talking to the doctors…
I’m kinda amazed when I read about someone who stops eating gluten and feel 100% in a matter of months.
Maybe that’s why I think accepting this as the new norm might just give me peace of mind..for now anyway.
Lots to think about
thanks Dude
You’re welcome Robin. Lots to think about indeed…
I think I’m ready to stop testing. Every once in a while, I feel really good. But much of the time, the fatigue and joint pain are still there. I can always trace any start-up of GI problems back to a glutening, but I also have the DH rash and ataxia (sudden attacks of balance issues and slurring words) that come on when there wasn’t a possible gluten contamination (I have a GF kitchen and had eaten raw veggies with no dip, for instance). I kept thinking that I must have gotten gluten somewhere! But I don’t think so. I think there’s just so much damage that what’s better — and it’s significant — is what’s going to be better, but what’s not better probably isn’t going to get much better. I wish there were more resources for Celiacs who aren’t 100% better on a GF diet, or for those like me who were 100% better for a time and then after a couple accidental glutenings, just never got back there — like those accidental glutenings pushed me over the edge to the point of no return. It would make it a lot more palatable and less frustrating when a GF diet isn’t the cure-all.
Sorry to hear Rita. It’s so hard not healing. Have you tried eating Paleo for a stretch? It’s worked quite well for me?
Hi GF Dude, I’m a recent subscriber to your blog altho not a recent Celiac compared to some. I’ve been eating this way since about 1999 and boy have things improved availability-wise since then. Breads are soooooo much better. I can not eat milk products or anything with sugar (pretty much the same symptoms as being glutened).
I searched your blog about probiotics and this is the posting that came up, so that’s why I’m here. Probiotics have helped my ALOT so i wanted to share that with you and fellow celiacs.
When I get glutened I have a variety of symptoms…fatigue, aches, sinus issues, all of the stomach ones as well plus brain fog and a day of depression. These used to span about 2 weeks. I had been taking a probiotic for many years but recently health issues drove me to try a much more potent one, multi-strain with 50-70 Billion cultures per capsule…after taking this for about a year, daily mostly, my symptoms after being glutened have reduced in duration to 5-7 days instead of 2 weeks. It was a gradual change…but so worth the cost of high potency probiotics!
So I just wanted to tell you that something has helped, it won’t make it go away but it has REALLY made a difference with recovery from being glutened which to me is HUGE. fyi-I am one of those people that reacts badly to a tiny amount but I also haven’t given up on going out to eat so this has been well tested…
Eating yogurt will not give you enough probiotics…
I would love to know if you try this and how it works for you
I’ve gone thru probiotic stages but for some reason I’m not good at taking pills on a regular basis. But I do believe it helped me some.
To be honest, I think that way of thinking is horrid, I’m 17 years old and was diagnosed with celiac disease, a little over two years ago. I’m extremely sensitive and will get sick even if I’m near someone cooking with flour, it’s airborne. I’m also very open to talking about it, I don’t see it as a diet, it’s a life style. I stick to my gluten free diet as much as possible, I would never knowingly eat something containing gluten, And so many people are surprised to hear that. That’s pure stupidity. Why would a person put themselves through that knowingly.
And honestly gluten is so bad for a person, just by cutting gluten out of a normal persons diet is extremely helpfull for weight loss.
When I started my gluten free diet I started to gain weight (about 15 pounds, I was also malnourished for years because of my celiac disease) which is extremely hard for me because I have such a high metabolism, but I started feeling so much better in general.
And I honestly can’t see myself living my life any other way.
I would also like to state, that I feel “normal” all the time, I only feel sick if I have had gluten.
I’m also so sensitive that I can sometimes tell if something has gluten in it, as soon as I put it in my mouth, it has saved me a few times.
I love reading your older stuff. I just want to hug “Monica” and everyone else who still isn’t feeling well.
I started keeping a food journal after I was gluten free for 6 months and would feel off – I found that the common denominators were always the same – white potatoes, white rice. It didn’t matter if they were an ingredient, or a whole food item. I would get bloated, exhausted, cranky, gassy – you name it. The celiac symptoms I don’t get when I’m glutened – I would get if I had white rice or white potatoes. That took me back to a dentist I had as a child – when my dental problems just couldn’t be explained, he told my mother to stop feeding me any white food: rice, potatoes, bread, etc. He described it as a possible reaction to starch because this was in the early 70’s. I was not diagnosed until 2005, when I was 35 years old. I’m 46 now, 47 in 4 months. I can honestly say I feel better now than I ever have in my life. Of course, there are quite a few other things I did – vitamins and supplements to make up for the years of malnourishment, and to help my body learn how to absorb nutrients again. I control sugar because we have a tendency to have hyper adrenal glands. I have not had anything surgically removed, and have not gotten so much as a cold or the flu since my diagnosis, my seasonal allergies have even disappeared – and I work in a pharmacy setting, so lots of sick people around me five days per week. I believe my immune system and I are a partnership, and the best thing I can do for that partnership is to pay attention and fully listen to my immune system. I wish with everything I have that I could give this experience to everyone. My doctor told me I have the worst case of celiac she has ever seen (this is only due to how I react, and how violently I react), and I think she enjoys observing me. No poking or prodding – no need since there’s no cure and she knows I’m 100% GF – but if I get injured, she enjoys watching the progress of my healing compared to “normal” people. At least one of us has fun with that! And yes, I do dumb stuff, and I get injured: “how high can you jump auntie?”, “don’t let that CO2 tank hit the ground!” (it took six months to fully recover from the sprained neck, shoulder, and back), “can you still skate?”.
I wish all of you health, and more good days than bad! Thank you for having this community’s back, GD! You’re still my favorite!