I was diagnosed with celiac disease 8 years ago this week. Happy Celianniversary to me. Happy Gluten Freenaversary to me. Happy 8 Years Later and I Still Hate Itaversary to me. Thanks.
Do you know one of the main reasons I started this blog four years into my celiac journey?
Because almost everyone said it would be easy. And it’s not.
Because almost everyone said I’d feel better right away eating gluten-free. And I didn’t.
Because celiac is such a puzzle to solve. And I didn’t have all of the pieces. And fact is…I still don’t. But I’m in such a better place than I was four years ago.
It’s rare that I write a blog post two days in a row (I’m very aware of Dude Fatique). And it’s more rare when I receive an email from a newly diagnosed celiac that is in such anguish, that I’m drawn to respond right away. But the email I just received calls for such an occasion (damn…I misspell “occasion” every single time. Thank you auto-correct!)
Here’s the email I just got…
I was diagnosed with Celiac Disease about a week and a half ago and it has been a long journey to stay the least. I am now 36 and my problems started when I was 19 years old. I have had numerous blood tests, colonoscopy and an endoscopy coming up soon. I have been told, throughout the years, that my blood work is negative and at other times borderline for Celiac Disease. Well…the last results were positive. I’m a mess and I’m actually crying while typing this email as I sit in my cubicle at work.
I’m beyond tired of feeling like my insides are constantly rebelling against me. I cannot take it anymore…no one should have to live like this. I have tried a gluten free diet in the past, but I still have had terrible sickness. I know now that I have no choice but to stay on a gluten free diet for the rest of my life, so the day I got the call that I had a positive result, I started it up again.
At first I felt a significant amount of relief, but for the last 3 days I have felt terrible. I feel like when I eat gluten I am a sick, but I also am sick on a gluten free diet. I’m totally at the end of my rope and tempted to give up on food completely. I just don’t understand what I’m doing wrong.
I know that there are people out there that have it much worse, but I guess I’m just feeling like I’m at a crossroads with food. Damned if I do…damned if I don’t. I’m really not looking for a reply…I just needed to vent this out. Besides, I think this email is bit of a crazy rant and I apologize for any grammatical errors…not in a good way at the moment.
Thanks for listening.
There is no need to starve…I assure you. First things first, do not go gluten-free until AFTER your endoscopy. Otherwise, it may not be accurate. So try to get that done asap.
My first big piece of advice: Be patient. It can take the body months/years to heal completely. It’s not going to happen overnight. I know that sucks because you’ve been feeling awful for so long. Stay the course.
Here is the one thing I wish people told me upon my diagnosis: Going gluten-free is just one part of the puzzle. Yes, it hopefully allows your body to begin to heal. Yes, it is the ONLY treatment for our disease. And yes, it is indeed step one in your recovery.
But did you know that four years into my gluten-free diet, I still felt like crap. Or as Mrs. Dude always accurately said…”YOU NEVER FEEL WELL!”. As always, she was right.
So the question is…why didn’t I feel well? I was doing what the doctors said. I was doing what many in the community said. And yet, I felt just as bad as the day I was diagnosed (even though my body was indeed healing…as I put on the 15 pounds that I lost the year before my diagnosis.)
So what did I do to begin my new journey? I stopped eating gluten-free. Meaning I stopped buying replacement foods and started eating food food. Yes, I said food twice. There is such a fear for the newly diagnosed of giving up all of the things they once loved. So the initial instinct, as it was for me, was to head straight to the gluten-free aisle in the store and buy…crap.
“I can’t give up pizza!” Phew…I can buy gluten-free pizza.
“I can’t give up pasta!” Phew…I can buy gluten-free pasta.
“I can’t give up cookies!” Phew…I can buy gluten-free cookies.
Don’t get me wrong. Eating crap once in awhile is fun. But not while your body is still damaged from years of celiac disease.
I’ve written extensively about this on my Stop Eating Gluten Free Foods blog post. The post has received 448 comments to date. Most of them positive. It’s not easy to hear, but I believe it’s important.
So please do yourself a big favor and please read this blog post. It was the beginning of my healing, both physically and mentally. And for the record, since then I have also given up dairy 100% and corn and soy about 95%. It’s helped tremdously.
There is no “one size fits all” for celiac disease. Your disease is not my disease. It all affects us differently and we all must find out what works for us.
Celiac disease is a true puzzle and it can take years to get all of the pieces to fit together. Be patient. And then be more patient. And in the meantime, don’t be too hard on yourself and by all means don’t give up. You’ll get there.
Er…can i make a suggestion, and with a friendly happy smile on my face, with no snarkiness or anything like that…
if somebody is facing into a life without lovely lovely gluteny food (i’m 3 years in myself) and it’s JUST been confirmed that they’ve coeliac disease, I’m not sure that advising them/suggesting/pointing them in a direction of cutting out grains/dairy/whatever is a good idea.
I’m not doubting, GD, that it worked for you, but you came to that conclusion after FOUR years into a GF diet. You’d gotten comfortable – for want of a better word – in your new gluten-free skin. You’d come to accept what you could have and what you couldn’t have, and found a sweet spot, from which point deciding that you could cut out other stuff – optionals (if you will) – was easy to do.
But if somebody had told me a fortnight after diagnosis “yeah, you want to cut out gluten, and truth be told, the gluten free stuff is a joke as well” might be a bit much to take on.
3 years in, I’m in agreement-ish with you. When I go to the GF section of my local supermarket, the only thing I pick up is bread. But there’s nothing WRONG with pizza, or pasta, or cookies. I mean, if you’re going to eat that stuff constantly, I guess there’s a problem but eschewing replacement products right out of hand, from the get go? I’m sorry, that’s a bit hardcore!
keep up the good work!
Ivan
I will (very respectfully) disagree with you Ivan. In my opinion, I suffered for years because no one told me this. And yeah…when Mrs. Dude strongly suggested I go dairy free, I fought tooth and nail because I was already giving up so much. But the truth is, my body was not healing because of what I was putting inside me. And perhaps if I started a few years earlier…well, you get what I’m trying to say.
And note that I did not say that giving up some of the fun foods is a permanent thing. I’m all about balance. But the body has got to heal first. Thanks 🙂
Gluten Dude, my lovely wonderful GI doctor who diagnosed me 7 years ago gave me explicit orders to not eat dairy for the first year I was gluten free. Although that first year was hell on earth, I’m so glad he did this. Dairy was causing infinite damage and pain that was unnecessary. I also watched other grains and as I’ve healed more I’ve been able to add them in from time to time. I adjusted to Almond Milk, Rice Milk, etc. and love it even more than Cow’s milk now. I don’t think cow’s milk is really meant for human consumption anyway, it’s meant for baby cow’s. We have been taught wrong all our lives and have to “re-learn” how to eat and care for ourselves. Unfortunately I think a lot of Celiac’s do not get proper information when first diagnosed so they’re left still sick and so confused. Thank you for having this community for people who feel lost like we all do when we first start this journey.
You are quite welcome. Yes, the medical community has a long way to go.
I’m in the “respectfully disagree” camp as well. I think before you cut, you need to educate yourself about what you are eating, what is healthy, and what is not healthy.
When they tell you to go gf, they don’t tell you that there are varying levels of quality and nutrition in foods (like white/wheat bread for the gluten folks). You have to educate yourself to find out white rice flour is about as great for you as Wonder Bread, and that beans can provide fiber, and such things.
There ARE good, nutritious gluten free products out there. But you need education in order to find them, not Dr. Google, which is where most folks end up after a medical professional tells you to go GF, and Dr. Google will tell you to go ahead and eat whatever’s GF in the grocery store.
Education is way more important than cutting out all grains immediately. I do agree with the cutting dairy – there are a world of options out there (some are even low calorie, hurray!) and even if dairy can return to one’s diet later, there are some really good non-dairy products that can stay around. My dad loves cashew milk in the place of dairy creamer, for example, and lost weight because of the cut in calories from the full-fat milk product in the original he replaced.
And I should have added – I ADORE Uddo’s Red Lentil pasta. Nothing in it but red lentils. It is super tasty and it is one of my few indulgences left in the grocery store.
You got it, Dude! (as always)
This one is from Jane A. Just noticed there is another Jane on this thread!
I was not able to eat dairy for about ten years BEFORE I was diagnosed. About 6 months after diagnosis and I tried ice cream again with no problems! I have slowly incorporated cheeses and have had no issues. I have been diagnosed with Celiac for two years and feel better than I have in years despite added life stressors around me. I have one free cookie brand that I eat from time to time (Tates) and a few select free goodies as snacks. Mostly I just eat whole foods. I have found that I still have trouble with leeks, onions, etc…. fructans are difficult for me. BUT…. I am not going to tell someone else to quite eating them…. they are not me, I am not them. We each have to find our own way through this. Sure, we can hear other people’s stories and learn but don’t just drink the kool aid because everyone else is…. it doesn’t always turn out so well.
As I said…my celiac disease is not your celiac disease and we all have to find what works best for us. Besides, Kool Aid isn’t gluten-free 😉
Kool Aid isn’t GF? My wife lets our daughter have this. She said their website said it was GF. Is that wrong?
Sorry…I was just being snarky. I actually have no idea, but assume it is based on your statement. Sorry bout that.
Thank you Gluten Dude for responding. The day I was given my positive diagnosis, over the phone, I was so upset that I forgot to ask if I should start a gluten free diet. So I emailed the doctor’s office and still have had no response. I have spent years not going to see doctors because it feels like healthcare has become a conveyor belt…nobody cares. My endoscopy is Nov 4th. I guess I will take this time to eat the foods I love for the last time. Thank you for letting me know not to stop eating gluten until after the endoscopy. I am disheartened that my doctor never replied with that answer, but very thankful you gave me direction. Thank you!
I’ll second that advice — and that it’s criminally neglectful that your doctor’s office didn’t tell you this. Mine didn’t, either, so when I finally had my endoscopy 6 months after my inconclusive blood test, I’d been gluten-free, on doctor’s advice, for 6 months. Guess what? The endoscopy was also inconclusive. So I’ll never know for sure if I have celiac, but I do know for sure what gluten does to my body, so I don’t eat it, at all, ever.
I was already dairy free when gluten was identified as a potential issue, but I will say that relying mostly on non-prepared foods rather than gluten-free packaged foods helped a lot. Packaged foods just aren’t all that trustworthy, in my opinion. Find a few “go-to” easy options for meals, for when you do still feel like crap. And find an indulgence to help when you feel really restricted. Mine was coconut milk ice cream.
I have to first admit that I didn’t suffer for years prior to my Celiac diagnosis. I was a late bloomer at 51 years of age and was confirmed with in 3 months with a blood test (Canada). I felt like I’d entered a foreign country and didn’t speak the language. According to my husband there was a serious period of mourning that lasted about 4 months. But I learned to speak the language and the mourning passed three and a half years ago.
I agree with ditching the gluten free food for the time being and would say get yourself a BIG vegetable steamer. If your not cutting out dairy/corn/soy there’s lots of stuff you can eat…but not much is pre-prepared. It’s an adjustment, and it isolating and if you don’t feel better immediately it’s just crap, but go back to basics…fruit, veg, protein, salt pepper and a bit of oil. And look out for the condiments…they’re sneaky!!
It will get better, but you have to go through it to get to the other side.
New Celiac, you’re not alone! Your story sounds similar to mine. I was 34 when I got diagnosed and am 41 now, having suffered since I was a young teen and not knowing what was wrong. There are several other possible factors to why you may still be feeling ill. Issues to consider are:
1. Dairy. Many Celiac’s need to avoid dairy for the first 6 months to a year after being diagnosed. I honestly don’t think this is talked about enough.
2. Prescription drugs of any kind can effect the gut substantially. Take inventory of what medications/vitamins you take to see if they are the culprit. People often don’t consider this as a factor to gut issues, but it really should be considered.
3. Length of time being truly gluten free and avoiding all of the junk foods as Gluten Dude is suggesting. If you really want your body to heal, eat whole unprocessed foods.
4. Other grains can be problematic, Oats, Rice, Corn, etc. Try a Paleo diet for awhile to see if this could be an issue.
5. And then finally, there is the issue of Time. It takes many people more than a few weeks to heal from gluten damage. It took me several years to feel well, get off of medications that were causing problems, etc.
Stick with clean eating, whole foods, watch grains, dairy, etc. and see what happens. Allow yourself the time your body needs to recover. I really believe it will.
I completely agree with this and everything our Gluten Dude said.
I wish I had known all I know now 8 years ago when I was diagnosed after 15 years of going from dr to dr. It was all in my head…now I know it was all in my gut.
Take this advice early to avoid all of the complications that can come if your immune system becomes more compromised. GOOD LUCK!
Truth Dude, truth!
There is no “one size fits all” for celiac disease. Your disease is not my disease. It all affects us differently and we all must find out what works for us.
My 5 cents worth on the initial gluten free bit (in addition to please stay on gluten until after your endoscopy, even though psychologically that is hard) is that some people feel really really bad for the first few weeks gluten free. I have no idea how the biology of this works, but it was horrendous for me. Horrendous but temporary. I’ld recommend stocking your freezer up with homemade chicken soup and really easy to digest food cause if you’re unlucky then the first couple of weeks might be tough. Good luck with finally healing.
Didn’t feel badly, per se, during the initial gluten free phase, but was surprised with temporary yeast overgrowth (which I tend to, anyway, but had been fine for years with the right amount of probiotics) as my body adjusted (good bye whole grain bread, hello rice flour! SO glad that there are now good pastas made with corn and quinoa and such).
I was diagnosed in July, subsequently went gluten free, and the entire month of August was absolute hell. More sick than ever. When September hit, I started to feel better. Now it’s December, and while I have seen good and bad days, I’m not fully recovered. The best days are when I don’t eat processed foods. 100%. So happy to hear I’m not the only one who went through an awful first few weeks!
Sorry to cherry pick one little thing out of your letter…but DON’T go on a gluten free diet before your EGD!!! I have seen too many people heal their gut up just enough to not be able to get a confirmed diagnosis during their EGD, then start eating gluten and go through the whole thing again!! If you have only had the blood test you do not have a confirmed diagnosis yet.
Two comments from me:
1) It has taken me a full year to feel significantly better. A YEAR gluten free. I was initially feeling better than I had before going gluten free, but now I know I was not nearly as healed as I thought. Hang in there! It really can take a while for some people.
2) I have found that after I experience an accidental gluten “exposure”, I cannot tolerate dairy at all. But when I am feeling good, I digest it just fine.
Of course we are all different, but these are two things I wish I had been told a year and a half ago when I started on this journey. Good luck and I wish you all the best.
I’m not sure how much of my advice you’ll want to take since I don’t have an official celiac diagnosis. However, I feel like I live as if I did. I’m extremely sensitive to trace gluten and have had to go to great lengths to prevent accidental exposures. I’m really not sure how much websites, literature, etc. tell you where/how to look for gluten contamination, but you need to consider ANYTHING that may have come into contact with someone’s hands that had gluten on them, some surface that has gluten on it, etc. I’m a hand-washing fiend when I’m in the kitchen, and by the time I’m done fixing up food, my hand towels are drenched. If I need to handle food, I will open up its container or packaging first, wash my hands, and then handle the food. I’ve been dealing with a lot of issues lately with foods I eat with my hands, and I’ve found I have to be very careful about utensils, dishes/containers, glassware, etc. to make sure that when I handle those, I don’t get gluten on them which may get on my hands while eating a meal and then transfer to the finger-food when I pick it up to eat it. I’ve started wiping down stuff before packing it into my lunchbox in the morning, and I even put napkins and utensils in a separate bag for good measure. This may sound nuts, but I’m trying it to see if it will alleviate some issues I’ve noticed cropping up more and more after meals I eat at work. I think a lot of this trace gluten enters my house via the packages I pick up at the grocery store. No telling how many hands have been on those, from people picking them up to putting them back to who knows what else. The conveyors and buggies probably have their fair share of gluten too. This is not to scare you but to give you something to think about if you’re feeling glutened but not sure of the source. A lot of the stress with going gluten-free for me has stemmed from the cross-contamination issue almost exclusively. I’ve not felt deprived due to lack of options, and I have supportive friends and family. As for other food intolerances, I’ve had to listen to my body to figure out what to eliminate. I’ve discovered reactions to vinegar, guar gum, and flaxseed. I cut out dairy for over a year but was able to reintroduce it with no problems. I also seem to handle soy and corn fine. It all depends on the person. You may not even be as sensitive as I seem to be either.
I wanted to follow up on my issues eating at work because I believe, hopefully, I’ve figured out what’s been causing them. Here are the steps I’ve been taking over the last couple of weeks or so to make sure I can eat safely at work.
1. I bought a mini-fridge (NFL party fridge from Amazon) in which to put the things I plan to pack in my lunchbox the next day. My main fridge is most likely full of gluten from the packages/containers that came home from the store. This way, I make sure my food baggies/containers remain free of gluten.
2. I’ve been putting fruit like bananas and applies in baggies to protect them.
3. Since my ice pack has to stay in the freezer because my mini-fridge is a fridge only, I put it in a baggie to keep any gluten on it from contaminating my lunchbox and the other things in it.
4. I put my utensils and napkins in a baggie to protect them.
5. I wash my lunchbox in the sink with dish soap and a paper towel to get it completely clean. The disposable wipe just wasn’t removing all the gluten.
6. I no longer touch my mouse and keyboard with my eating hand. I use one hand to eat and the other to control the mouse and keyboard. If I need to use both hands on the keyboard, I’ll wash my hands before I resume eating. I would wipe down my keyboard before eating, but I don’t think the wipe was removing all the gluten from my mouse and keyboard either.
I certainly hope this helps someone. It took three years before I realized I was getting gluten through my lunchbox, mouse/keyboard, and lunch containers/baggies.
One thing a lot of GI docs won’t know is that a condition known as microscopic colitis is far more prevalent in celiacs than the general population. If your symptoms are persistent watery diarrhea, multiple trips to the toilet during the day and diarrhea that wakes you up at night, you might have this. Giving up gluten might help reduce the symptoms but there are so many dietary triggers, you might not find them all. I gave up gluten, dairy, most raw vegetables and still couldn’t get it under control. I take Uceris, a time release steroid that is poorly absorbed in the blood stream, treats the colon, and is eliminated first pass through the liver so it has very few of the side effects most steroids have. I’m on one pill every other day and have things largely underestimate control. It took me four GI docs to get to this point, so you really do need to be persistent with them. Do your own research, do a diligent elimination diet and slowly reintroduce the main suspects – dairy, soy, corn, then check into Fodmaps like onion, garlic, legumes… But if you can’t figure it out there are options.
My irony-o-meter is detecting a movement among celiacs to reject gluten free products. I guess we’ve served the marketers purposes anyway.
Stay off gluten, kids
btw, for those people not consuming dairy, how do you get your calcium? Bones?
18 months after my daughter was diagnosed with Celiac and went GF, we took her down to the Mayo Clinic because she was STILL so fatigued and not feeling well. Mayo found that she is also Fructose Malabsorbent! (This is apparently not that uncommon for Celiacs) So all those lovely fresh and dried fruits she was eating (because they are healthy, right?) — were in fact CAUSING the fatigue and brain fog, and probably caused the “Small Intestine Bacterial Overgrowth” which was giving her the stomach pain.
Now that she’s fructose free, the effects are obvious: A couple of missed currants in the GF scone, and a small amount of raspberry jam and she slept like she was in a coma for the next 2 hours. One small slice of apple with honey for Rosh Hashanah (even with a glucose pill to counteract) and she would have crawled under the table and slept for the next two hours if she hadn’t been the host for dinner.
I am dealing with fructose malabsorption now. So far I am having absorption issues with lactose, polyols, and fructose. I am going back to my GI on Monday to ask about a SIBO test.
I am fortunate to live where there is a large Mayo Clinic. They were just rated #1 in the world in Gastroenterology. My GI doc is there and I am quite happy with them.
As an aside, found the SIBO, which he said is common with CD, when he sent me for those same tests (Fructose, Lactose, etc), and they showed the SIBO but no reaction to the actual challenges.
How did the test show SIBO, if you didn’t react, how did the doc know, how did he find it? i asked my gastro about the hydrogen breath test to check for SIBO…but he didn’t think much of that, said that test is inconclusive and I could just go on an antibiotic….but why do that if I don’t know if I even have it? How are you being treated for SIBO?
They test for hydrogen in your breath. In all three tests, I had elevated H2 at the start, before the challenge. That is a sign of SIBO. I also had symptoms of SIBO which went away with Rifaxamin. So the test wasn’t conclusive, but combined with the symptoms, it was very suggestive. The antibiotic treatment’s success was a final conformation.
Unfortunately, Rifaxamin (Xifaxan) is very expensive unless you buy overseas. I am trying to getting it from the Veterans Administration, after it was prescribed by my Mayo GI doc. I was able to talk the VA into one dose of it, but I don’t know if they’ll give me another. VA is just as screwed up as the news reports say, and I use the one in Phoenix where all the fuss started. At the VA, the pharmacists second guess the doctors and can veto prescriptions on any grounds, not just safety!
I should have added. Rifaximin is a preferred antibiotic because it is poorly absorbed, so you are dosing your gut but not the rest of your body. It also is reportedly less likely to lead to Clostridium DIfficile infection. It is available at Northwest Pharmacy (Canada), and other places. It’s about $1.40 a dose there, vs $40 in the US. It is a generic drug in most countries, but not in the US, unfortunately. Also, I spelled it wrong in the prior comment.
I didn’t read all the other comments, but I can assure you that the Dude is correct about staying away from “GF” labeled food. At least until you are more stable and have figured it out. I suffered for 55 years with gut issues, skin issues, brain fog, thyroid issues, bad fibro/fatigue, you name it. Now, 12 years later, I am good to go because I stuck to the course once I was diagnosed. May I suggest that you check your meds — over-the-counter as well as Rx), all your personal care products, and cross-contamination issues in your home. Don’t eat out for a while, until you are sure of what you are doing and the restaurants where you might go. This is not an easy life-style, but cancer and a few other big issues are waiting for you if you do not heed the diet every day. Try to just eat simply for a while. And cut out all oats. A small percentage of celiacs react to the avenin in oats as if it were gluten, so stay away! It sounds like you may still be getting gluten at this point, but, as Dude says, it does take a while to heal, and we are all different. Best of luck to you.
I suggest a more moderate stance. I went GF some time ago, 4 or 5 years before a CD diagnosis, because it became possible to do easily. It worked – I felt amazingly better, after 30 (yes 30) years of suffering. I would not want anyone to avoid GF because it is too hard, and I might have done just that. So I’d say – eat what is comfortable, including “junk food” if you want it, until you’ve been GF for awhile. If it doesn’t work, get more strict. If you are okay with to starting strict, go ahead and do it.
GF grocery store food is better than nothing, at least for me. In fact, at this point, the foods that cause me the most trouble (other than gluten containing) are basic foods, not the prepared stuff. A Papa Murphy’s GF pizza, for example, works for me (I tell them to be very careful in prep).
As GD says, everyone’s different.
All of what The Gluten Dude says is true.
I would kick that doctor’s butt for not returning your call. That’s BS. Sorry, I know they’re busy people, but you’re the patient and you have a perfectly reasonable question and concerns.
Good luck on the endoscopy; and don’t stop eating evil gluten until AFTER.
You will eventually feel better. It’s like the Dude says, everyone is different. I just passed 2 1/2 years and for the most part, I’m a whole new person without gluten. Friends who have known me for years are stunned that the memory fog that used to surround me is pretty much gone, not to mention skin problems I had have cleared up, etc. A litany of things that were all jacked up because of the gluten. There are still days when I don’t feel great. But compared to what I felt like before I was diagnosed? A million times better! It is hard, no one here will mislead you with platitudes or misbegotten advice, but it is so worth it in the end.
I cried like a baby when I found out; I used to pet and cuddle with bread baskets. I’m not joking. Same with cakes, cookies, cupcakes, pasta. And now- and NOW!- there are so many gluten-free options that are delicious and safe, it’s almost as if I have no right to be missing it, when I have other options that are just as tasty. It’s like a death in your family- you’ve lost the gluten, now you need to mourn it, put it to peace, and learn to live life after it’s gone. And you will. I wish you the best of luck in all things! Stick with the Dude’s blog. I’m not shitting when I tell you he’s a great source for what is real and what is BS with gluten (an example of the “BS” would be Cheerios claiming their cereal is gluten-free and it never was and never will be. GD was right on about that whole thing).
Dude, how did you figure out about being sensitive to soy and corn? And, thx for all your work on this blog!
Dude, how did you figure out you were sensitive to corn and soy?
Gluten dude. I totally agree with you. It took a year before my husband began to feel better after his diagnosis. About six months into the first year we followed a month long elimination diet and identified several other issues such as corn, dairy, citrus, onions, and a few other foods. After eliminating everything he is sensitive to, he really began to feel good. I believe that the gluten sensitivity issues mask other food allergies. As you heal through a gluten free diet, the other reactions become more pronounced. For over 6 years this lifestyle has not been fun, we hate having a limited diet but no pain makes it worthwhile.
I was diagnosed 13 years ago, when I was right around the same age as the letter writer. As the Dude and many of us know, there’s a misconception that you’ll stop eating gluten and then suddenly feel better. At least for me, that certainly was not the case. It takes time for your inflamed gut to heal. It also takes time to really figure out how to avoid hidden gluten and cross-contamination. My diagnosing doctor told me to give the gf diet a minimum of 3 months before expecting any change at all in the beginning.
The first two months I had all of my usual nasty GI symptoms, and then it even got worse! Much worse, in fact. It was almost scary. It almost felt as if my body had to process the poison and get it out once and for all. And then around week 9 I started to feel better. The GI symptoms suddenly cleared up. I’d never known what normal digestion had felt like before. It was a revelation! But, in the beginning, there were also a lot of screw-ups. It takes time and practice to learn how to live as a celiac and how to avoid inadvertent exposure. Be kind to yourself. It’s a skill like anything else. Eventually, it will be second nature.
My other symptoms slowly improved over the years. I even felt calmer and my level of anxiety went down. Chronic pain I’d had and had not thought was related slowly improved too. But those improvements took years. I got better little by little, month by month. The way Celiac is portrayed, people think you stop eating gluten and then — poof! — you suddenly feel terrific. Maybe some have had that experience, but for me it has definitely been a process.
Before my diagnosis, I’d already known that I had allergies to other foods. I’d already been living with a restricted diet. The diagnosis felt so overwhelming! I remember walking out of the doctor’s office feeling dazed and grief-stricken. I got into my car and burst into tears. For some reason, my first thought was “I’ll never eat birthday cake again.” It was the month before Thanksgiving. I was so sad and overwhelmed I sobbed. I cried a lot in the beginning. (Keep in mind, this was also before most people had ever heard of gluten. There was no gf bread or anything like that in the grocery store… at least not that you’d want to eat!)
But after a few months had passed and I experienced what normal, pain-free digestion felt like, all of those “favorite foods” only looked like poison. The attraction to them was gone. But that still doesn’t mean you don’t grieve or get frustrated. Time helps with that too. It’s all a process.
It will get easier, and you will feel better. But it does take time to heal. My biggest pitfall in the beginning was eating out. I kept getting sick doing that. The Dude has a point about eating real food, at least in the beginning. Simple meals at home in your own controlled environment are the best way to go, especially in the beginning. Pack your lunches for work. A week and a half is not nearly enough time to see much, if any, improvement yet. It will come, but it’s still early days. Hang in there!
//“I can’t give up pasta!” Phew…I can buy gluten-free pasta.//
Sorry, I’ve got to disagree on this one. For me, GF pasta is not crap. There are enough different types (different ingredients) that most things beyond gluten can also be avoided. And the pasta just forms the base for a wide variety of dishes that include all sorts of simple natural ingredients. How about some spirals with a sauce made of fresh tomatoes, fresh onion, fresh basil, fresh garlic, some dried oregano, maybe a little crushed fennel seed, extra virgin olive oil, a splash of white wine, and a cheese or two (which could be dairy free)? I used to make the same dish before I went gluten free, and a simple switch of pasta was all it took to make it GF.
Sure, the GF pasta costs twice (or more, sometimes much more) as much as wheat-based pasta, but it’s worth it to have a simple substitution that lets me have an old favorite.
I think that, generally speaking, the advice to eat whole, unprocessed foods is really fantastic advice for anyone, but in particular people who are struggling with the kinds of issues that we struggle with when we have Celiac disease. I agree that the gut needs time to heal and avoiding the many issues with processed gf alternatives is probably a wise move. (Also, GD, we were diagnosed with Celiac disease the same month – it’s also been 8 years for me, last week! But anyhow…)
The one thing I would be very cautious about, however, is advising other people to eliminate whole categories of food. One of the first places I went after diagnosis to try to figure out the gf diet and how to manage all of this was the celiac.com forums. What I found there was an abundance of advice on cutting this and that out of my diet – it ended *very* badly for me. Like many others here, I didn’t have medical support in transitioning to the gf diet, and I didn’t feel better right away. Well, I have dermatitis herpetiformis, and that got better almost immediately and I’ve never had a major outbreak since, but the gut issues didn’t get better.
So here I was, very sick, very vulnerable, and reading about how all these people cut all these categories of food out of their diets and finally got better, so my answer was to just cut another category of foods when I continued to feel poorly.
Aside from aggravating my already problematic anxiety, I developed a full-blown eating disorder, ended up really underweight (I’ve very small to begin with) and it took me *2 years* to recover from the damage that I did to myself by eliminating foods willy-nilly without guidance and help. The first several months after I realized what was going on and what I needed to do were miserable and really, really sick. Once I started actually eating enough food to sustain myself, my body healed, I gained back the 15 pounds that I absolutely needed to to get back to healthy weight, and I stopped feeling like I was going to vomit and die every day. Since then I’ve gained another 7 pounds and learned how to make the slow, small changes that will be sustainable and not destroy my health again like that. I also don’t get as sick when I get glutened now (which I learned that hard way this past summer when I experienced the worst restaurant incident I’ve ever experienced), and I suspect that it’s because my health has improved so much overall.
So please remember, it’s not often discussed in our community, but those with Celiac disease are at risk for eating disorders and we need to be mindful of that when giving advice to newly diagnosed Celiacs. The whole thing is really overwhelming, and there needs to be some sort of acceptance that it’s normal not to feel better right away; it takes time to make the adjustments beyond that initial shock of removing all the gluten so that we can experience what our optimal diet and good health look like for us. I do appreciate your acknowledgment that we’re all different so our dietary needs will be different, but we just really need to be careful not to overwhelm people, especially at the outset.
(As an aside rant, it drives me absolutely crazy that we’re largely left to our own devices to figure everything out! I can’t think of a single other disease where people are diagnosed and not given at least *some* treatment, support and education to manage their disease properly! Okay, I’m done now.)
Well thought out comment Kim. Nicely done.
As with anything listen to all the feedback and then do what your instincts tell you to do. Being Celiac is a roller coaster for all of us. I was diagnosed while living in Australia for 3 years on a work assignment and in Australia they have much tougher food labeling standards and are really good about providing guidance. I started to feel great. Then I moved to Switzerland where I curently live and work on assignment. Just when I thought I had it all figured out I moved to a country where foods are labelled in 3 languages and none of them are in English! I travel a lot for work and am constantly in countries where it is tough to navigate the gluten free landscape. But in more than 22 countries around the world…..I have survived it. I have my ups and downs and places where I find myself very hungry (China, Singapore, Vietnam) and places where I am pleasantly surprised (Italy, Scotland)! Every time I come to America I fill my suitcases as there is so much choice there! I know it is tough but you will find yourself trying things along the way, some will work, some will not. But know that others are out there supporting you and you will feel better at some point. Best to you. Hang in there!
I cannot eat anything except: fresh fruit, fresh vegetables and fresh (unseasoned) meat. The gluten cross-reactors are NOT tolerated by my gut. Status post surgery, I do not vary from this anymore.