This is not a “SH*T…I have celiac disease and my life sucks” kind of post. But it’s a “Crap…when I have a good stretch, celiac will always remind me it’s there. Always.” kind of post.
And I indeed have had an amazing stretch. Fall was very good to me. I was on the AIP mostly, my stomach felt great, my energy level was dare I say…normal. I was actually planning a blog post titled “Do I Still Have Celiac Disease??”. That’s how good I felt.
But celiac has a way of saying “Yooooo hooooo….I’m over here. Don’t forget about me.” And this week I got pretty slammed. Don’t know how. Don’t know why. Don’t know where. Don’t know when. I don’t know much…do I??
Don’t know much about history
Don’t know much biology
Don’t know much about a science book,
Don’t know much about the french I took.
But I do know that I love you,
And I know that if you love me, too,
What a wonderful world this would be.
Ok…where was I? Right, celiac. It is literally just the nature of the disease. It is a constant unwanted companion. Your guard needs to be up 24/7 and even when you’re ungodly diligent, well…the disease can rear it’s ugly head and knock you on your ass.
I have a bestie in the celiac community (that I’ve never met…yet) and over the years we reach out to each other when one of us is struggling. (Dude note: if you don’t have this kind of person in your life…get one…now.) Yesterday, we had the following conversation:
Me: Sometimes, not too often, but sometimes our disease sucks the ever-living life out of me.
Her: I hear you loud and clear. Did you get glutened or is the disease just being a jerk?
Me: I honestly don’t know. I just left the bank and I couldn’t remember my phone number or social security number. Just crazy.
Her: Oh that’s scary. My memory has been scary bad lately too. One time I was driving a few blocks from my house and I couldn’t remember how to get home.
Me: Unreal.
A few hours pass and she reaches out to me again. (Gotta love the support).
Her: How is your brain now?
Me: I have had four glasses of water and three cups of tea in the last four hours. My brain seems a bit better, but my bladder is ungodly full.
And yet…this morning, I woke up with some clarity. Go figure. I’m seven years in and I still can’t figure out this disease. Just enjoy and cherish the good days, knowing that there will be some bad days ahead. And that, my friends, is celiac disease.
——–
Dedicated to the celiac community:
More than five years in…still trying to figure this beast out. So glad to not be alone in dealing with this absolutely crazy, unpredictable and relentless disease. And that is with 100% gluten free diet! Send you and everyone else in this unfortunate club lots of compassion.
I came to the conclusion that alcohol is not my friend and never again will be especially because the effects thereof on my body are multiplied exponentially (usually weeks) in relation to how very little I consume. I think we must continually stay as near Whole 30 and/or AIP as possible to enjoy excellent daily health and any deviation (I never knowingly consume any gluten) comes at a hefty price. The price depends directly upon the degree of deviation. I also pretty much deleted all forms of sugar except my fresh fruits. I feel better than I have in 7 years. This is my permanent direction. I’ve altered my mindset that my food is basically my medicine (since I take no medicine at all) and I’m tumor and cancer free for first time since 2011.
Small price to pay to regain my once most prized great health. I can enjoy some limited good meals with good friends outside my home as long as properly planned and I remember that any deviation from my standard daily routine may come at an inordinate price.
As much as I enjoyed my great health during my first 50 years, I now look forward to enjoying mostly great health (minus gluten) during the next 50.
So happy to read you are cancer and tumor free now!
Thanks for the post. I really needed it after eating the WRONG lasagna in the fridge which was in a bright purple Tupperware so I’d remember. A double whammy of being glutened and being forgetful.
I never associated gluten and being forgetful. Lol. Only 3 years since learning I have this desease. Thanks for making me aware. Had much brain fog in the past, but sort have forgotten about it. Always something new to learn with Celiac, but for me it’s keep my guard up. Easy to forget to check ingredient labels. Ugh
I’d just like to add that I, was saying I’d like to add that I was telling my son, ….what’s his name, never mind, not important, but I’d like to add what was I saying. Oh yeah, I’d like to add that CD hasn’t effected my memory or focus at all. (I say with tongue planted firmly in cheek). Really
Yep…..one day you feel great and then out of nowhere the brain fog etc hits. People without Celiac or non-Celiac gluten sensitivity just cannot fully understand it – no matter what. It’s ours alone. My wonderful family always needs to know exactly why/how I got glutened…. sometimes I just don’t know but the reaction is always the same.
A really nice person in Pilates class this week told me that she wished she had my disease so she wouldn’t eat all the stuff during the holidays and gain weight. I just kept doing my work-out and cried in the car afterwards. I think a lot of us suffer in silence.
Ouch!
A lot of people have a funny misconception that because we don’t eat gluten, that our diet is so much healthier and we never have to watch our weight. They still have gluten free chips and candy! For some celiacs who travel or don’t always have a kitchen nearby, it can get hard to stay healthy because the portable/easily available gluten free foods are often snacks and cookies, and those aren’t really doing us any favors.
A few weeks ago a new symptom began to develop: any area of skin that I put pressure on (other than palms and fingers, soles of feet, butt) gets red after the pressure is removed and in a few minutes starts to itch and in the most affected places goes beyond itching to just plain hurt. It’s gotten to the point that if I sleep on my left side and then turn over to sleep on my back or right side, it’s hard to go back to sleep. Hand lotion and anti-itch lotion help make it quiet down after half an hour or so. (Of course if I scratch, it just keeps going.) It’s become hard to get a full night’s sleep; today I got four hours, was up for a while, then got another three. It’s ridiculous.
But, is it a celiac symptom? Or (take your pick), the new jug of laundry detergent (maybe they changed the formula), or a buildup over time of some component of the gluten free vitamin-mineral supplement I take, or some deficiency that the supplement doesn’t sufficiently address, or one (or more, or some unhappy combination of) the GF flours I’ve been experimenting with for bread, pita, and pizza crust, or mold or some other “sick building” problem in our townhouse, or some weird infection I picked up at the office of the new dermatologist I’ve gone to once, or some other dietary or environmental problem I haven’t even thought of, or some virus or fungus I’ve picked wherever? Or some problem of the aging (I’m 77) that I’m just learning about?
Of course, celiac (DUM, dum, DUM, dum) is always a suspect. It will always be a suspect when any new problem arises. For the rest of my life.
I’ve cut out gluten, for over three years now. Do I need to cut out something else? Who knows? Should I do the elimination diet (oh, great, what fun!) on the assumption it may be something that is newly a problem because of CELIAC? Or should I try to eliminate one by one they other possible sources of my problem. I could go to my doctor, and see if she can come up with a diagnosis (with so many options, fat chance!). I could go to my dermatologist to see if he can come up with a diagnosis (with so many options, fat chance!). Either doctor could misdiagnose the problem and send me off on a wrong direction, when it’s really caused by some CELIAC thing.
//But celiac has a way of saying “Yooooo hooooo….I’m over here. Don’t forget about me.” And this week I got pretty slammed. Don’t know how. Don’t know why. Don’t know where. Don’t know when. I don’t know much…do I??//
I hear ya.
Dick
Do not experiment ,Dick L., go straight to the doctor and surrender to being diagnosed of anything. NEVER self-diagnose, it is dangerous. You do not know what you have. See a doctor who knows CD really well so he can rule-out the disease. If you live close to a CD University Center, oh, go; you may even find they cover all the costs for you if they are doing studies on CD patients. But, please, do not put your own health in jeopardy.
Did I say I was going to experiment? I’ll be seeing my doctor before long. She needs information to do an informed diagnosis. The more information she has about recent changes in things that I mentioned, the better equipped she’ll be to differentiate between various possible diagnoses.
As far as self-diagnosis goes, I need to be confident that any diagnosis I do receive makes sense. By the time I had the duodenal biopsies to confirm the celiac diagnosis, I’d read a fair amount about the disease, so was pretty sure my primary care doc’s preliminary diagnosis of celiac was correct. But I went ahead and had the procedure to confirm the diagnosis. Celiacs in particular need to be a little (or maybe a lot) wary of the medical community. This blog is filled with tales of misdiagnosis.
I have celiac disease. My health will always be in jeopardy.
Could not agree more! And just because a person is a doctor that doesn’t mean they know ANYTHING about all of the things Celiac is and does to those affected by it. I still don’t think it is “just” gluten that causes all the symptoms. Something is going on with our immune systems. And most doctors, really, just don’t know that much about Celiac. My latest encounter with a medical professional … moved to a new city … state … had me practically biting his head off when he made a joke about Celiac … “what’s a few farts every now and then? ha ha ha”.
Good morning Dick
I hope you find a correct answer soon. My DH definitely includes a skin pressure sensitive component such as you describe. Dermatitis Herpetiformis, “CD of the skin,” was my first most notable of my CD symptoms, other than coughing up blood and a CT scan after about every upper respiratory infection. I knew I had finally found my correct Dx before even going to my Drs when I read the following definition from the UK:
“like rolling in stinging nettles naked with a severe sunburn, and then wrapping yourself in a wool blanket filled with ants and fleas …”
Yep, that’s about as thorough and accurate a description as I could concoct. Then my Drs and $25,000 of tests eventually confirmed this definition’s Dx of DH and CD.
DH can occur later in life, even with such distinguished men of your age, weight and hairstyle on a strict gf diet. Dapsone is the drug of choice for the itching; however, close blood test monitoring is required because of possible side effects, so I chose no Dapsone. I use my DH as my own personal glutometer, which is much more sensitive that any man created device. Stress can bring on DH symptoms regardless of how gf you are.
Since our skin is our largest organ, DH can be quite irritating. In fact, behind my CD related 3 cancers and 5 retina surgeries, I would place DH ahead of the CD related abdominal distresses, which are debilitating enough.
If you need any of my experiences and/or Drs’ info, please let Gluten Dude know and I’ll be glad to help. I wouldn’t wish the relentlessness of DH on The Devil himself to suffer for all eternity in the lowest pits of hell so I hope, if you are starting to suffer the symptoms of DH that yours are quickly Dx’d and easily treated. The best my retina surgeons can surmise, this DH skin component of CD was most likely the culprit for causing my retinas to disintegrate. Thanks to quick thinking and great surgeons (and for me Divine Providence) I can still very thankfully see with both eyes.
Just knowing what little I know about you from reading your posts and our mutual affliction, I’d bet my own money you are experiencing another component of our shared disease that keeps on giving. Take care my CD friend!
Thank you, Hap, for taking the time to reply and suggest DH. That could be useful information for my doctors. I suspect it will be difficult for them to diagnose this particular problem, and like the basic treatment for CD is to avoid gluten and it’s gang of grain proteins, the treatment for this will probably involve cutting out some food or class of foods. But right now that’s for the docs to say. If I draw a blank from them, I may have to get serious about trying to figure it out myself, despite maria’s emphatic exhortations to the contrary. I may need to find a celiac knowledgeable nutritionist as part of the quest.
Fortunately, for now, my new symptom is not even remotely similar to the hell of DH that you describe. And I sure hope to get it diagnosed and with a treatment plan long before it gets any worse.
//such distinguished men of your age, weight and hairstyle//
[Grin] My avatar is an old (1800’s) woodcut of John Greenleaf Whittier. I’m probably not so distinguished, though. But if you imagined glasses on him, you could probably pick me out of a crowd at an airport.
Thanks again,
Dick
You’re most welcome Dick … we CD conquerors must stick together:
“I’ll lift you and you lift me, and we’ll both ascend together.” — John Greenleaf Whittier
Since Ol’ John is long gone, I’ll know it’s you, instead of him, when I see you in that airport !
I agree with all you wrote Dick. Plus, we have to always be our own most ardent patient advocate. My doctors all care very much; however, as my GI DR told me, “you are a medical mystery” and I’ve heard many similar sentiments from my other physicians as well.
FYI, DH was progressive for me over more than a decade. We originally thought I had some sort of peanut allergy back in late 90’s. At first my wonderful dermatologist didn’t even consider DH and my NP didn’t even consider CD because as they said, “you’re much too healthy for an auto immune disease” that is until I was no longer as healthy as I used to be and about to kick the bucket. It took CD a long time to drag me down. Now that I understand this insidious disease more, it usually flared back then because I was eating peanuts originating from a wheat cc facility and a lot of whole wheat products. Then the itch and rash progressed more rapidly over a 3 year period to the point I was covered and ready to jump off the nearest bridge. My first cancerous skin lesion from the continual inflammation was cut out in 2011. Then similar cancer (squamous cell) showed up in my esophagus and then my colon – not metastatic – but new lesions from the inflammation. I did not know to stop eating gluten until Nov 2012. All tumors were eventually either excised or healed after a long period of absolutely no gluten.
I think you’re in much better shape since you’ve been gf for so long, and not eating gluten, if the only source, should keep yours from getting worse as mine did because I didn’t know better. I had to stop eating salads with pecans from my favorite deli – you guessed it – all of their nuts come from wheat facilities. You may be getting cc food from source you wouldn’t otherwise think is a source of gluten. I think you are on track thinking it may be some additional and/or cc food source.
Best regards and here’s hoping for a Happy New Year for you and those you love.
Do not experiment, Dick L. and do not self-diagnose, it is very dangerous . Go straight to a doctor, better a doctor who is an expert on CD to see if he can rule-out CD; if there is a CD University Center close to where you live much better because even, who knows, they could cover all costs if they are doing CD studies on patients but never self-diagnose; this is a serious disease .
I was diagnosed with celiac disease ten years ago. I know that since mine is an an autoimmune disease this is going to be a roller coaster. I have noticed sometimes I forget things; yes, yes, CD affects memory. I have noticed those “voids” in my thoughts trying to find the right words to describe something. When that happens I think of my small intestine that has not healed well and in some sections it is not absorbing well, so my organs are not getting all the nutrients. Next, I have to go to the vitamin cabin looking for my multi-vitamins-minerals plus another bottle I have for my minerals alone. Curiously I had a bad moment months ago when I had to look at my written address because suddenly I had forgotten it. I have not mentioned other things I have to struggle with constantly like muscle cramps, colds on a row, that are part I believe of this disease. But that is life and that is celiac disease. It is something we need to learn to deal with it, mentally and physically. The best bet for me has been constantly reading and learning about my disease, it somehow gives me peace of mind.
I’m fairly new to the community (DX and GF 4 months ago), but already I can see that CD is the disease that keeps on giving. Like a box of chocolates you never know which symptom will raise it’s ugly head today.
To Dick L. I have been noticing that lately when I go to shower some nights my body from the waist up is red and in the early stages of a rash, itchy and sensitive. Mine doesn’t seem to be pressure related and has been off and on, but so far not to severe-knock on wood. I would like to echo others advice to get diagnosed, but my personal experience with my GP has been very frustrating and disappointing. Medical options vary a lot with different individuals and we don’t all have as good of options as others. Best of luck.
Happy New Year, Feliz Año Nuevo, Athbhliain faoi mhaise duit to all my fellow celiacs!
// I would like to echo others advice to get diagnosed….//
Oh, I’ll try. I have a visit with my primary care doc coming up before long, and I’m seeing a dermatologist on another matter next week, so I’ll ask him for an opinion on this, too.
(BTW, actually there was only one other giving me advice, but she responded twice to the same comment, so it looked like “others”. Sometimes it takes a while for new replies to show up in the comments. And sometimes it’s only necessary to do a hard refresh (Crtl-F5 on Firefox) of the page to get a new reply to show up.)
And yes, Happy New Year!
Dick
I’m in year 3 diagnosed and due to how literally deathly ill I was right before being diagnosed (can happen when you’re 41 when they finally figure it out) the Epstein Barr virus became reactivated in my body. Yep, it’s mono but only so much worse and more complicated as an adult with a compromised immune system. One more gift of celiac disease.
Luckily along with it came an amazing doctor who is knowledgable in autoimmune diseases. He explained to me that even though I manage my disease like a rock star, diet/rest/exercise, celiac is a constant battle. From things like it compromising your immune system causing illnesses to simply your immune system being very out of whack the longer you were undiagnosed. I often get random hives, just for fun, along with the the brain fog, exhaustion etc.
It was sh*&ty to hear the doctor say this but it was also a gift to know this is “normal” for celiacs.
To all my teammates on Team Celiac, stay strong, we are in this together. Listen to Gluten Dude and find a support partner and/or stay connected to this on line community. I can tell you that it has helped me so much.
Peace and good health xo
“Random hives, just for fun” … love it … right there with you Sue.
My past favorite on my right shoulder looked like a big, red lobster with tail and claws. My wife took a picture … just for fun … to remember it by. Ha ha.
That song…always forever…..
Thanks for the post. It never gets easier, just keep learning to deal with it and accept it.
I would try AIP but I have no idea what I would eat for breakfast. Any suggestions? Dude won’t answer any questions about typical meals despite many people asking. Why is it such a secret you won’t share?
Just google AIP diet and you get all kinds of info. Coconut yogurt for breakfast. Good stuff.
It’s been six months and I’m still learning. I made myself some new food last night, just after I made my husband some gluten pizza.
Within an hour of dinner I was in the loo crying with gut cramps and the eventual outcome, and vomited what I’d eaten.
Stopped vomiting after that but still in and out of bathroom.
Came up with a fever too, so can’t decide if I got glutened or got some dodgy GF canned goods (I’m in Aus, and labeled GF means there’s non detected. I mean maybe contaminated)
So, still trying to work out the ins and outs of CD for me. Still dealing with ignorance, too. A colleague asked if I might not be able to cheat ‘just once’- you can guess what I told her! She also believes gluten is an unhealthy thing in general. I explained for most people it’s just a protein, nothing more, nothing less.
A patient who had offered me something with gluten proclaimed that he ‘didn’t beleive in that’ when I told him I couldn’t have it.
I understand the whole gluten confusion, but I explained to him that it’s a medically diagnosed condition, not just something that’s taken my fancy. I doubt he bothered googling it, though 😉
I have had Celic since I was 3 now I am 14… people may say there life sucks with this desease and mine does to… sometimes I wonder why I had to be chosen to get this. The rest of my family doesn’t have it so why should I? Everyday I get asked why I’m different then judged. But this is who I am and I don’t care what people think I am me and no one can change that I have celic so what. So I can’t eat what you guys can but my food is good and I love me for me💕
You are not defined by your disease, but by who you are. You have a great attitude and are a lesson to me (I’m old as dirt), stay strong. When others judge you it is they who are weak.
Thanks so much, friend. Just read this a few days ago when it came out. And now today I’m forced to acknowledge that I’ve probably got diverticulitis again. (The diverticuli are a nasty souvenir of the years of undiagnosed celiac, as my body was attacking itself.) So, I’m in that place you were describing….so frustrated to think that I’ve DONE NOTHING WRONG but yet my body just isn’t in the mood to cooperate. So, re-reading this article to remind myself I’m not alone. Thanks.
I always like your posts.
But (as a relatively-new celiac) I have an important question about this sentence:
“I hear you loud and clear. Did you get glutened or is the disease just being a jerk?”
Do you mean that you can be sick just for being celiac and not because you eat gluten?
My doctor told me that if I stay away from gluten I’m 100% like a non-celiac person health-wise, and that’s actually what I feel.
I don’t have strong symptoms and I never notice anything different from the norm (always been very forgetful, but I frankly don’t attribute it to gluten- I’m no more forgetful that some non-celiac people)
Thank you!
My husband was diagnosed with Celiac disease in 1983. At the time he thought he was the only person in the world with it. I had never heard of it back then…nor the term, “GLUTEN FREE”. Most of his doctors (aside from the gastro ones) had to look up exactly what Celiac meant.. they’d studied about it in med school, but of course didn’t have many patients that had it-so they had to make sure what exactly it was!!!. We only knew of ONE woman other than my husband who had it and it was like a miracle-she was not as strict on a diet as my husband and had many problems which they talked about in the waiting room of a doctor’s office…. We’ve learned a lot over the years. His skin problems –the red weepy itchy areas? Caused my MILK…he doesn’t eat milk or cheese? NO skin problems!! His brain fog? Lack of B 12 and Folic Acid and other B vitamins..and that goes away … When he was diagnosed? Docs said, “NO RYE “OATS” WHEAT OR BARLEY”…and now they’re they’re saying that OATS are ok… He tried those once and got very very sick..(they were supposed to be from a dedicated source) and so OATS are out for him too. As far as meals go? Well? I normally eat as he does. There’s bacon and eggs and toast (gluten free bread of course)..He eats ham and tomatoes on gluten free bagels or English muffins .Lunch is gluten free soups or salads with every color vegetable in the salad…He eats BBQ and french fries and all sorts of cooked vegetables…green beans…corn…peas…carrots…anything fresh is great! He may eat a steak and a baked potato…there’s a gluten free pizza place close by so he can eat pizza BUT will suffer a bit because of the cheese, so he doesn’t indulge with that much . I make spaghetti and tacos….you can read labels and see when a product is gluten free now…Many of the gluten free cakes and cookies are actually very good! Just be very careful if you eat out…things can get cross contaminated..especially if they’re FRIED…french fries are cooked in with chicken nuggets….etc… Ask folks to change gloves when you eat out.. My husband went from weighing 109 pounds (6’2″) to a healthy 204 with muscles. Just know that having Celiac Disease you’re gonna have some ikky days sometimes. But? taking a good vitamin helps! Don’t over do the chips and the junk foods..and sodas..if your having skin problems? stay away from milk…and oh, one way I know my husband has gotten a DOSE of gluten? HIs breath has a sick, sweet, metallic smell….odd smell that he normally does not have. I can tell every single time..and we’ll know he’s not gonna feel at his best then. We’ve lived with it 31 years..and? It’s not even thought of as being a “problem” anymore! There are so many things..so many farmers markets…so many products now…it’s pretty much a piece of gluten free cake!