When I was diagnosed five years ago with celiac disease, my doctor nailed it right away.
I didn’t really think twice about it at the time. He’s a doctor. I was a sick patient. He did his job.
But since I’ve started this blog, I’ve come to learn that my diagnosis was the rare exception and that most in the medical community are absolutely clueless about our disease.
And even after we finally get the diagnosis, we are simply told to not eat gluten and are shown the door.
“But…but…but…what has gluten in it?”, we ask.
“Look it up.”, we are told.
And that’s it. No follow up care. No nothing. We are on our own to begin a new life that we know nothing about.
Is it ignorance? Laziness? Arrogance? All of the above?
This leads us to today’s Celiac Rant of the Day.
It’s a real powerful story from somebody who has been through the ringer and feels desperately overwhelmed.
Any words of advice would be most appreciated.
Oh…and if you are a member of the medical community, I would LOVE to hear your response.
I am a freshly diagnosed Celiac. I’ve always known something wasn’t right. Everybody always seemed healthier, energetic, happier than me. I have weird issues that nobody can explain. Depression, anxiety…they threw pills at me for that. My skin sometimes hurts in a weird tingly ice cold pins and needles way, and I get weird rashes on my scalp that make me look like I’m scratching at lice bugs. I can’t remember things.
They did some tests but nothing came of it (terrified me half to death when they scanned for brain tumors).
When nothing conclusive was discovered I was just… forgotten.
Who cares if this 21 year old has joint pain? It’s just inflammation, take it easy, take some more pills, and it will go away. I got labelled a hypochondriac. I was making it up.
Then, about 3 months ago, it was as if my body just gave up. I had no energy to do anything. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. Then I started getting ‘actually’ sick. In a way that counts, I guess. Up at 3 am, going to the bathroom every 20 minutes. Getting incredibly nauseous after eating. I lost a lot of weight in a very short time period. Finally my doctor figured shit out. Countless tests later, and he set up an appointment to talk about the results.
I was told I have Celiac. That I can’t have gluten. That I probably inherited it.
I was told if I cut gluten out completely, I would feel fantastic and everything I’ve been complaining about since I was in my early teens would go away.
“What is Gluten?” I asked.
“It’s in wheat. Just watch out for it. Read labels.”
Then I was sent on my way.
I have spent far too long scouring the internet for information. My friends are telling me it’s not that hard to avoid wheat, it’s not like it’ll kill me. Christmas dinners are being planned and people are getting annoyed. I don’t even know how to tell them what to look for, because I haven’t figured it out yet.
I am so incredibly lost and overwhelmed and angry that I have to make all these changes, and I don’t even know what changes to make or how to make them. I have absolutely no medical guidance, and the internet is full of contradictory information. Soy is good, yet it contains (through cross contamination) almost 3000 ppm of gluten…but some Celiacs eat soy without any issue.
I went to a local bakery that advertised gluten free options. Unfortunately they are custom ordered gluten free cakes, and when I asked the woman about cross contamination, she looked at me like I was crazy. My good friend is taking me out today for lunch. I am not looking forward to trying to figure out the restaurant when I don’t even know all the right questions to ask.
I hate change.
I hate this.
I should be happy I have a diagnosis, but I feel like the medical community has abandoned me.
I don’t know what I hope to accomplish by venting. I just need to not feel so overwhelmed right now.
Thanks for listening.
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac.
With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away.
There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.
Don’t you feel better already??
47 thoughts on “Celiac Rant: The Medical Community Has Abandoned Me”
I know that Gluten Dude might not agree here, but all I can say is what “turned the light on” for me…… took 30 years to figure out what was wrong, in that time I saw 60-70 different doctors, got tested for a ton of stuff (can we say the majority of these were intrusive and uncomfortable, if not downright painful) and had more drugs thrown at me than you can shake a stick at.
That being said, I highly recommend Elizabeth Hasselbeck’s book, the GFree diet. Yup, she is a celebrity making $$$ off this, etc., etc, but her book made me cry 🙂 She does explain, in simple terms ( and you might be so messed up and confused right about now that simple terms are a good thing) where you find gluten (everywhere) and how to cope with being gfree and actually living a life.
It is a starting point, helped me immeasurably, and is well worth it. Helped me explain in clear terms to my family what will mess me up at dinner (they are as confused as you are, they just don’t get sick from it) which helps all around.
My motto is take the help wherever you can, especially if it is not forthcoming from the medical profession…… her book brought me clarity and started me on the right path a lot more easily than independent research did.
Hope this helps, and hugs.
Oh, I did get a diagnosis after biopsies were done, and got cut loose in much the same way you were. The instructions I got were “Don’t eat wheat, barley or rye, there’s the door”
“I know that Gluten Dude might not agree here…”
True but if it worked for you or anybody else, that’s what’s important.
I’m with you. I was lost after diagnosis, the “nutritionist” my doctor sent me to just handed me a bunch of brochures and said “there is a lot of stuff on the internet.” I read EH’s book and it helped me too. It was the first book that came up in an Amazon search. She may not be my favorite person in general but I thought her book, like you said, was a good starting point.
I agree with Joanna in her comment above, that suggested the book “The G-Free Diet” by Elisabeth Hasselbeck.” I checked it out from the library in hardback, and later on CD… The book was equal parts information and encouragement.
I can totally relate to the newly-diagnosed Celiac, because I was diagnosed only a month ago, right in time for Thanksgiving and all that. I felt confused, hungry, deprived (because everyone in my family was snacking), and alone. I went on Facebook, and “liked” every possible gluten-free or celiac blog, and kept tabs on all of them. I found a small handful of products in categories I liked (I’m a crunchy-salty craver, so finding a good GF brand of chips was like finding gold). And I’ve started packing myself little survival packs to carry with me wherever I go… so I never get just absolutely starved and weak. Every day is still a challenge, and there are foods I would love to eat, that I doubt will ever be as wonderful as the glutenous equivalent…like pizza. :-/ But… YouTube has helpful videos with recipes for stuff like that, and if you Google for restaurants (around your zip code) that have gluten-free menus.
I really think that a diagnosis of Celiac, or gluten-intolerance, should be followed-up with a visit to the nutritionist. Doctors just do NOT have knowledge about what gluten-free really means…how many forms gluten can take, and the extensive list of ingredients to avoid. I had to go it alone, too… just like this fella. Not fun… Scary, and lonely.
But each day gets easier!! And with each day, my diet gets more interesting, and less boring.
Good luck, man!! You’re not alone!!
I am a nurse and I agree with this….my symptoms were fibromyalgia and chronic fatigue primarily and I had to beg my GI doc to do biopsies. “the gfree diet” was what initially helped me. It helped me to realize the severity of cross contamination etc. and dealing with social situations. I have never liked to be difficult even when choosing where to eat so it was hard at first telling my friends that I couldn’t eat certain things. I will tell you most physicians even don’t have a clue what the depths of celiac even are. I now see a functional physician because unfortunately a lot of people who have autoimmune diseases don’t get completely cured from going gluten free especially if you have been misdiagnosed for years. After 29 years of misdiagnosis I am working now on healing thyroid and adrenal problems through diet. Honestly my best advice is also to find a functional physician in your area to make sure you don’t have other allergies along with celiac so your gut can heal properly.
Oh honey! I know how you feel. If you can, call ahead to the restaurant to see what gluten free options they have. As for the grocery store, most stuff is labeled if it has wheat in it. Learn how to cook, seriously, it will save your sanity. For holidays I make my own gluten free stuff and take it with me to dinner. Whole Foods website has a delicious gluten free stuffing recipe. There are lots of gluten free gravy mixes or you can learn how to make delicious gravy using corn starch instead of flour. The holidays can be difficult but they are manageable with some planning. I hope you start feeling better soon.
It is overwhelming and frustrating, especially once you know what it is after months of unexplained exhaustion, depression, and worry. You feel all alone and everyone downplays the effects it can have on your health, your emotions, your spirits. I have been gluten-free for over 5 years (after visiting emergency rooms all over the northeast thinking I was dying). My transition to eating gluten-free heavily involved eating fruits and vegetables and going to the gym. All that helped rebuild my confidence and I was able to start cooking gluten-free. Once you can pass through the initial overwhelming stage, I promise you will feel liberated, lighter, and healthier! Good luck.
My best resource was Dr. Peter Green’s book “Celiac Disease: A Hidden Epidemic”. Amazing book by someone who is a leading authority on the subject. Easy to read and understand but accurate and informative. You owe it to yourself to read this book!
I believe after 49 years of being ill that I was born with Celiac or close to it.
When I was 6 weeks old I stopped eating and turned gray.
The doctors did not know what was wrong so they gave me a shot of penecyllin.
I had an adverse reaction to that anitboitic (the preservative was made out of wheat gluten as in all shots in USA)
My doctor gave me a shot of something else. I probably got a double dose of gluten with the second shot.
I have been a basically sickly child ever since.
The medical system in this country has evolved over my lifetime to be a “CAPATALIST INSURANCE COUNTRY”
My medical history is spotty with so many changes to insurance plans and no insurance that I have had 15-20 doctors over the next 20 years into my 40s.
Illness after illness is misdiagnosed until the doctors give me an anti depressant because they just don’t know what is wrong.
Little do they know I have at least TWO AUTOIMMUNE DISEASES.
1. Celiac (sprue) and it’s complications.
2. Hashimoto’s disease.
Which can cause deep depression and aggression. (as can Cymbalta which they give me without an official diagnosis)
I become aggressive and depressed.
Stopping Cymbalta made me lose track of 3 days in 2010
The complecations of undiagsosed Celiac and Hashimoto’s Disease has caused other health issues.
I might not be able to digest 96 ogther foods due to GMO or added Glutens from Genetically modifying any and all grains.
We need stricter standards and regulations when growing our food.
We need clearer labeling of GMO and altered foods.
I want clear labeling of all GLUTEN AND NON GLUTEN FOODS.
I want the term ALTERED FOOD used on GMO or other type of Altered foods.
I am tired of being sick and tired of the general population not knowing what they are eating. Why they are sick and have high rates of diabetes and obesity.
Not sure where you are geographically, but the nutritionists at Nutritional Weight and Wellness (weightandwellness.com) in Minnesota were really knowledgeable and incredibly helpful by creating menus for each meal and giving plenty of options to navigate the muddy waters of Celiac. There are podcasts to their radio programs you can listen to as well.
Restaurant eating is quite the challenge, but like one of the other comments, calling ahead can be really helpful. While it may feel awkward to ask so many questions, it’s your health at stake! Ask away!
Please look for a support group in your area. It helped me soooo much. It is the one-on-one interaction that will help you through this process.
I promise you that things will get better. It is slow, it is frustrating, but it will get better.
I’m in my 2nd year of eating as a celiac and so much wiser. You may start out eating a lot of commercial imitations of gluten food you are used to that is labeled GF. That’s fine for awhile. You will eat more fruits and vegetables than ever before. Soon you will be using less sugar and making more food that you crave at home. Your palette will change and the commercial food won’t taste as good as what you make yourself. Eating out loses its thrill when it is a “white knuckle ” experience and will be reserved for social occasions. No more stopping for a bite. I would take my own food to parties until I understand what to tell my food preparers. There is a lot to learn about hidden gluten and cross contamination. In the long run, you will be a food connoisseur and find yourself lucky to have discovered all this great food. All of us have been through this – this blog and many others are very informative and supportive. Hang in there and become your own advocate.
First of all, you are not alone! My now 17 year old was diagnosed two years ago and we are still learning. It takes a while to start to feel better, but you will always have to pay attention to your immune system more than others. Your diet will be a daily challenge to find food to eat that you like that is not cross contanimated, but it does get easier! As far as your scalp, my daughter has the same issue. When I mentioned it to her pediatric gi (also the dept. head for the hospital we go to), he had never heard of it. We switched to all gluten free hair and makeup products. To start Dove, Garnier and many more are gluten free. We use Arbonne shampoo and conditioner. Dove is the safe bet for soap, deodorant, etc. They say it doesn’t affect your stomach, but it does create a rash and also what we call gluten pimples on her face.
It can be hard to eat out. Some restaurants we have found that freely offer gluten free menus or at least an ingredient list are: Olive Garden, Chili’s, AppleBee’s, Chipotle (have to explain how to prepare as to not cross contaminate), Panera, Maggiano’s (they give you an extra serving to take home!). Many individually owned restaurants can be more accommodating.
As the Gluten Dude mentioned, try to eat as naturally as you can (fresh fruit, vegetables, protein), and avoid the food with a million ingredients. The labeling of food has improved quite a bit in the last two years so if you are picking between two products, choose the product that has the ingredients labeled like Contains: Milk, Soy, etc.
Best of luck!
I was like you a few years ago, diagnosed with celiac right before the holiday season and sent on my way with no information.
I would say be cautious, ignore other people who have the attitude that “it won’t kill you” because actually it can over time, and the immediate effects of horrific enough to make it vital to eat fully GF.
Having older family members with this same diagnosis who continued to abuse their body because of this lack of information made my battle more annoying than I expected. The first week after diagnosis I bought GF for dummies, and it gave clear guidelines. I confirmed that with many books after that but the first holiday season was the toughest by far. Family may love you but I know the first year my family was unwilling to change their long standing traditional holiday foods for just me. They have now, 5 years later, especially since I have started cooking more and showing them how great GF foods can be, but it takes time.
Don’t get discouraged, buy some GF cookbooks and bring your own foods to holiday gatherings, start your own GF holiday traditional foods and welcome others to try it if they choose.
Also keep coming to supportive people like the GF dude, being able to talk about it helps the most at first.
The best way to get with the program is to JOIN a CELIAC SUPPORT GROUP!!!!! If there is not one in your town, then find one on-line that appeals to you. Call GIG or CSA and ask them for a referral close to you. That is the best way to learn how to deal with this disease.
“I have spent far too long scouring the internet for information. My friends are telling me it’s not that hard to avoid wheat, it’s not like it’ll kill me. Christmas dinners are being planned and people are getting annoyed. I don’t even know how to tell them what to look for, because I haven’t figured it out yet.”
Everyone here has given great advice. I would start with printing out some short and exact info about celiac disease, and give the info to your close friends and family. Perhaps sit down and have a talk with Mom and Dad? siblings? Can the dr. have a conference with your family? You definitely need to cook for yourself. Don’t buy anything processed anymore, unless it has 5 ingred. or less on the label, and try to buy from a dedicated facility.
When your friends say, “it’s not like it’ll kill me.” Do you mean trying to go GF won’t kill you or that wheat won’t kill you, b/c if it is the latter, YES IT CAN!
You have been scouring the internet, well, there is a ton of info out there, you can figure this out b/c you have to.
A few things I had to learn the hard way, you need your own toaster. If someone uses a pot for cream of wheat, you can’t use that pot, unless you run it thru the dishwasher. kinnikinnick.com has some great GF bread, a dedicated facility, no cross contamination.
You might find that fruit bothers you, soy, milk, sugar too. Cross contamination is the biggest obstacle, which makes eating out a nightmare.
One thing positive about your diagnosis, is that you found out at an early age. By the time I was diagnosed, (55 years of age), my body was so inflamed, it is going to take a very long time, and if ever, to feel like my normal self.
Your family needs to be concerned and supportive. Plus, it is an inherited disease, someone else in your family may have it also.
You will find you will need to “talk” about it until everyone gets it. And be prepared that some will never get it.
Good luck, and try not to let your emotions get in the way of your intelligence.
I’m with you newly diagnosed. I’m going this week for my blood panel although like many other posters have commented, even if it is negative, i know i am celiac. There is absolutely no fricking way i am going back on gluten-are you f-ing kidding me??? What other disease do you have to ingest poison in order to diagnose.
Doctor: Uh, you have heart disease, in order to prove this we want you to eat a baconator to confirm.
Me: Bleep you.
“Drain the pressure from the swelling,
The sensations overwhelming,
Give me a long kiss goodnight,
And everything’ll be alright,
Tell me that I won’t feel a thing.
so give me novacaine.”
I agree that a support group is what can help you the most. I read books, researched on line and made mistakes as I went along, and it took me 6 months to really figure out what had gluten and what didn’t. My niece joined a support group when she went gf, and right away she had help from the members–one even went grocery shopping with her to help her select “safe” foods. If she had a question, she could call a group member for an answer anytime. It is also nice to see that there are others out there with the same problem that you have–you are not alone at all!
Welcome to the fold, kiddo. I had the same symptoms as yours–and tons more—and I understand how it feels to be both scared, yet relieved to know what was causing all that weirdness. I know you are feeling overwhelmed and scared right now and believe me, I was told nothing more than “go gluten free” upon diagnosis (a DX that took almost my entire my life to get) but I researched my deeply foggy brains out and came up with a plan and so can you.
It is not the end of the world to be diagnosed with celiac, I promise you and yes, you need some help and good advice.
(1) The best books IMHO to start with are:
Celiac: The Hidden Epidemic by Dr. Green and Rory Jones.
Celiac Disease:The First Year by Jules Dowler Shepard
(2) The Gluten Free Shopping guide
(3) I recommend this nutritionist’s website and book–her name is Shelley Case, RD
(4) as well as these helpful blogs by nutritionist Tricia Thompson, RD that discuss everything from foods to avoid to how to read labels to food labeling laws
Just scroll down the page to her printer -ready articles
(5) I wrote a thread called “Newbie 101” for the newly diagnosed on celiac.com which the G Dude graciously allows me to link to. I am told it is a helpful resource.
I do not recommend plunging head first into all the gluten free products out there just yet.
I recommend a plain, whole foods diet–, but no dairy for 3 months– so your gut can heal. Then, add some dairy items back in—one at a time to see if your bowels have chilled out.
Your villi are blunted right now, and as a result, you are also temporarily lactose intolerant.
Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tips of the villi.
When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go GF, the villi will heal and most people are able to tolerate dairy foods again.
“Dump dairy” for the first 3-6 months is the usual advice given by most celiac-savvy doctors.
I also provide links to:
Safe and unsafe food lists
What to ask your primary care doctor to do for follow up care
How to avoid cross contamination
Suggested menus for Breakfast, Lunch and Dinner
What supplements you may wish to take
(6) and finally, you wrote:
“…the internet is full of contradictory information. Soy is good, yet it contains (through cross contamination) almost 3000 ppm of gluten…”
Well, hon, I do not know who told you that, but that is absolutely false.
You will see many myths floating around and you will have to become wise to what sites are giving you reliable information and which ones are full of malarkey. If someone starts with “I have heard” or “I read somewhere”…ask to check the source. If someone wants to sell you something ( a pill, a program, a “cure”)…do not fall for it.
Anyone can sound authoritarian if they say something emphatically enough. 🙂
One of the best Celiac Research Center websites is this:
Believe them. Dr. Fasano, Dr. Green., Dr. Murray, Dr. Guandalini
These are our best celiac advocates.
Start reading and if there is anything else I can do, the G Dude knows how to reach me or you can message me on celiac.com.
Remember, forums are frequented by people with opinions. And opinions are not always facts.
Weigh everything you read against the celiac experts’ opinions. Take one day at a time.
Drink water and try to relax. Get some fresh air and exercise.
You are not alone.
Good luck. You’re going to be all right! 😉
Hi Irish Heart, I wish that I had read your Newbie 101 post when I was diagnosed 3 years ago! I was told to eat gluten free and that was it. I have just started a blog and am wondering if I could put a link to your post into one of my upcoming posts discussing the management of celiac disease after diagnosis. Thanks for your consideration! Jess (www.thepatientceliac.com)
Feel free to post any of those links above to your blog.
I do want to stress that even though I listed certified gluten free products in that thread, I firmly believe in a whole foods approach and home baking as being the better way to heal the gut.
If you will add that caveat to the link, I would appreciate it.
I added those various products at the request of members who needed convenient options for feeding their families, traveling, etc.
Good luck with your blog, hon!
I need to read these resources. Haven’t come across them yet. Thanks. When you mentioned “blunted” villi causing lactose intolerance, I have to say my heart just screamed! I have been wondering if I should weed out dairy, and I almost want to cry at the thought of giving up yet ANOTHER thing.
I have been eating MORE dairy to help my Osteopenia. I rolled my ankle at the gym at the beginning of Sept. trying to get unfit yet again and obtained a double fractured soft tissue damage. Needless to say, I have been pretty depressed about it all. I quit blogging and cooking.
My endocrinologist had me get off soy (because of my Thyroid). So the thought of giving up milk makes me feel helpless.
Also I just cold turkey-ed myself of Cymbalta (Horrifying experience). So I am pretty anti-doctor lately.
Sorry to barf all that on you but does dairy really impact my gut?
There are some fantastic-tasting coconut-based milk replacements (fortified with calcium) on the market now. From my understanding, in spite of the fact that milk has lots of calcium, it might actually cause more bone thinning (This seems to have some good info and links on it). My impression is that a lot of what we know to be “true” about dairy and bone health is simply good marketing from the dairy industry.
I developed a fairly bad milk allergy before my Celiac diagnosis. And then I became allergic to soy as well. I was so depressed! But it turned out milk is actually one of the easier things to replace, even without soy. It’s an expensive nuisance, yes, but absolutely doable in a way that won’t leave you feeling completely deprived.
Pretty much sums up my life. Years of being miserable, too sick to hardly do anything but drag myself to work and lay on the couch. Constant pain, vomiting, weight loss, GI bleeding, the list goes on and on…. What 24 year old girl should be living on a diet of baby food and applesauce because she can’t keep anything else down? After being tested for celiac about 5 different times and it being negative for some unknown reason it finally came back positive!! Also they did genetic testing that showed I had genetic mutations that made me prone to celiac. Been on gluten free since September now and feel so much better 🙂 But, once the doctors saw I was better, they said “see ya” call us if you get sick again…. I went from seeing my doctors more often than my boyfriend to “call us if you get sick”? Seems strange. All I know is I’m a new girl on this gluten free diet. Gluten had ruined my life (as you can tell I’m still a little bitter and getting over how sick gluten has made me over the past few years… :p I suppose I’m being slightly dramatic haha). I’m still new to this whole gf life, and considering how the doctor handed me a pamphlet and said “just avoid wheat”…. I had quite a bit to learn on my own. I have days where I am sure I have unknowingly ingested gluten based on how sick I feel again…. anyone have any good tips to eating on in restaurants? That seems to be my biggest challenge…. being so young I want to still be able to go out with friends and enjoy life and not constantly worry if I’ll be able to find something to eat wherever people choose to go.
If you’ve gone that long undiagnosed then chances are that celiac disease is just the tip of the iceberg. Having a compromised immune system (and your intestines are a large part of that immune system as one of the first lines of defense), means that you likely have secondary health issues like out of balance gut flora and intestinal parasites. I would recommend contacting the folks at HealthNOW Medical Center: http://www.healthnowmedical.com/. They can do a comprehensive set of tests to find out what, besides celiac disease, is going on and help educate you on how to eat in a way that heals your body. They are a destination clinic and work with people all across the country looking at the whole person to see what foods are problematic, what nutritional deficiencies you may have and how well the entire digestive system is working.
Another recommendation would be to check out http://balancedbites.com/ and their book Practical Paleo. Paleo has the advantage of being naturally gluten free as well as free of other foods that can cause health issues (like corn, soy, legumes). There is also a form of paleo called the Autoimmune Protocol which is a stricter version designed to help those with multiple autoimmune disorders.
People with one autoimmune disease often find they have additional ones. And food is most often at the root of those autoimmune issues. Sarah Ballantyne, Ph.D, a former medical researcher, who is, herself a celiac with additional autoimmune issues has a series of articles about the autoimmune protocol and what that entails: http://www.thepaleomom.com/autoimmunity
I was diagnosed with non-celiac gluten sensitivity and a soy intolerance by a chiropractor who did a complete metabolic panel on me to try and determine the source of my chronic migraines. The tests revealed an IgA reading that was 4-5 times above normal. I was told to go gluten free and given a small packet of information. That was it. No followup, No counseling, nothing. So, I got on the internet and started googling celiac and gluten free. I found a large number of bloggers posting recipes and information (some of it contradictory). It’s been a process.
Over the next year I was putting on a lot of weight because I was eating all these processed gluten free foods which were high in starch and sugar. A year ago I was diagnosed with non-alcoholic fatty liver disease and have since cut out grains, legumes, most starchy vegetables, and processed foods, and drastically reduced the amount of refined sugar I consume and only occasionally eat any diary. I lost about 40 lbs. I could still stand to lose some more and am working to do that slowly.
The initial diagnosis seemed daunting but since I have opted to go to a whole food approach, it’s a lot easier. Remember meat, raw fruits and vegetables and healthy fats are naturally gluten free.
I even started a Pinterest account where I could pin gluten free, grain free, whole food recipes: http://pinterest.com/navoff/
There’s lots o’ stuff there (note: not everything there is gluten free but anything that isn’t, is posted in a generic “Food” or a “Cute Food Idea” board; sometimes I will even add suggestions on how to make it gluten or paleo friendly).
Believe me, it gets easier. And by all means, try to find a support group you can hang with. It helps to have others in your same shoes who can share their experiences and ideas.
Janet, I just followed your Pinterest board. I also have one, called Celiacs Unite:
as well as about a dozen different gluten-free recipe boards.
A couple of thoughts on this… Where are you? There might be people reading this in your area who can take you under their wing as you make this transition. I know I’d be happy to. Also, I joined a few Yahoo groups. I don’t read every post, but I get a daily digest from each. I scan the topics and I have learned a lot from people’s posts, questions and stories. I have also used the groups as a resource for my own questions from time to time. Silly Yaks in Yahoo groups is probably the best one. The others I am in are for Celiac kids, since I am raising one.
Hang in there. You aren’t alone.
I can totally relate. I remember clearly when my GI doctor diagnosed me with Celiac Disease. I asked him for some help with the gluten-free diet. He had his nurse xerox some antiquated and hopelessly simplistic list of foods to avoid. It was maybe a list of 10 things that included: noodles, bread, pasta, cookies, cakes, pies, crackers, etc. Gee, thanks a lot, that’s a BIG help. Then I saw a “dietician” in town who didn’t have a clue about the gluten-free diet, nor what Celiac disease was. Wasted $300 on her. After seeing several extremely sub-par GI and other doctors, I finally found a great one in Chicago. But I really had to be my best advocate and be very aggressive. I did feel very isolated and let down when I was first diagnosed and was so sick and had no one else I knew who I could get any support from.
Wow, I feel your pain. I have other medical issues (as many of us do) and got the run around for years before being diagnosed with several food allergies including wheat. That’s all I was told. Over the phone. I had to do all the research myself.
I read Allergic Girl and every other book I could find at the library about food allergies. (I did it when I was dx’d with MS, then thyroid diseases, so it’s a trend!) I also went to a naturopathic doctor at a college (cheaper). I had more than one student contradict my research, tell me that “you can’t give up wheat cold turkey–you won’t be able to stick with it” and other gems. Quickly label the medical community “there’s something wrong with people” and “reasons to drink” and move on.
But I’ve had a lot of help too. My friends follow all kinds of websites and pass the info to me. They save labels for me and put aside a “safe” plate before everyone else contaminates the party food. My family is slowly becoming more understanding. Our local Freaks at the Table meetup group has been awesome.
Be your own advocate. Listen to your body. Eat as clean as you can until you feel better–then start experimenting, but not until then. Check everything you consume or touch for gluten. Your browser will start auto-filling every “is XX” you type in with “gluten free” for you. 🙂 Plan for long (LLOONNGG) shopping trips with your (or a friend’s) smart phone. Find a place to keep good notes of what works and what doesn’t. I use evernote for recipes and online resources and google docs for “eating out” (every restaurant I’ve researched and what I can/can’t eat there) and “what I can drink” (tequila, let’s just skip to tequila).
You will figure out what works for you. Everyone is different–you don’t have to take everyone you know on your journey, but your friends will go with you anyway. Good luck.
I’m the individual who sent this in…
I live in Canada. I’m not sure if there is much in the way of support groups where I am (Calgary, AB).
Thank you so much for the support. I’ll definitely be checking out all these websites and using all the tips you lovely people have provided. It’s so reassuring to know that I really am not the only person to have experienced this.
Here is another cool site for GF cooking. TONS of meal ideas!
Be well, hon!
Pixie, you’re in Calgary?? I went to university there, and one of my sisters lives there…
I had a hard time getting a diagnosis myself… it wasn’t until I met a naturopath here in Quebec who’d listen to me. If you think AB is bad for medicine, QC is a whole other crock of poop.
Check out: http://calgaryceliac.com/… they’ve got resources and help here. CONTACT THEM! Their site even has dining suggestions!
Also check out celiac.ca (the main group that runs the previous site I listed), and http://www.theceliacscene.com.
I also know of one GF blogger who is in Calgary… I wonder if she or her site might offer some local resources: http://wheatfreemom.com
When I was diagnosed my doctor not just told me to avoid gluten. He gave me the list of products which contain it and which don’t. And more – there was a list of laboratory examined products such as ice-cream, chocolates etc. that had or hadn’t gluten. So, I really hope, that people don’t face that much ignorance within the medical community as this guy/girl who wrote to you. Don’t be afraid to ask questions and sometimes be insistent.
As usual, left in the wake of IH there is little to nothing useful to add. I will say though that weirdly I found myself pondering then discussing with my husband exactly why we find ourselves just shut out like this. I don’t like the conclusions I came to and they are quite cynical, but hey… I’m a cynical person.
First, there is ignorance. Yeah, this is in the media every time you turn on a television or open a browser but how much of what we see is actual information and how much is crap? Lets be honest, we live and breathe this disease every moment of every day because we have to. I honestly don’t think doctors have the time or capability of being able to give us good information. That said, they should be able to give good resources and they aren’t. That is a large failure and is unacceptable. Go look it up on the internet, as I was told, is not medical advice. At least telling a newbie where to go for good information would be helpful.
The second problem I think there is, is that there simply isn’t any money in our disease. For so many other diseases there are drug companies in our doctors’ offices literally every day pushing this or that sample drug, giving out perks. For us? Nothing. Our doctors aren’t being given a free education about our disease by the drug companies and how to treat us because we can’t be drugged senseless. Many of our symptoms can which is probably why so many of us had drugs pushed on us for so long. Brand name ones too if you remember, only the newest and best for us. Undiagnosed we were money machines. Now we are nothing. There aren’t more tests to run, no drugs to prescribe, no treatment to give. Our health is 100% up to us. What point is there in the doctor knowing anything about our disease or giving two shits? Or heck even one?
I share your cynicism.
Celiac disease (until perhaps recently) was never really covered in medical school.
It was considered a “rare childhood wasting disorder” —which is why 97% of celiacs go undiagnosed. This is also why people like you and me are left to suffer for years.
The largest number of celiacs being diagnosed now–are people over 50.
By then, all hell has broken loose.
Until they stop symptom-treating in this country, there will always be money to be made off patient’s multiple health issues.
There is no $$$ to made on celiac patients–as there are no drug treatments.
Sadly, there is $$$ to be made when those unDXed celiacs develop additional health complications because of this lack of awareness.
We need to stop this cycle. Now.
“As usual, left in the wake of IH there is little to nothing useful to add.”
Whenever Irish comments, all I can add is “what she said” 🙂
I was diagnosed eleven years ago right before Thanksgiving. It’s a hard time of year to get the diagnosis. For the first couple of months I remember standing in the grocery aisles clutching a list of “forbidden” ingredients and desperately trying to figure out what I could eat. It will become second nature, but in the beginning it is extremely confusing. I feel for you. The medical people I saw, including the doctor who diagnosed me, were useless. I was referred to a dietician who didn’t know much about Celiac, aside from a xeroxed sheet of things she “thought” I “might” be able to eat that some other patient had left. Truth is, if it weren’t for the Internet and a few good books, I don’t know what I would’ve done. The medical people I’ve seen have been ridiculous. Most doctors don’t learn much about it in med school and there are no pharma reps hawking cures for it, so they don’t understand it.
It takes time to learn about the diet and to learn how to live with it. It takes time to get a sense of what’s a load of nonsense and what is info you can trust. It takes practice as much as anything else.
Even though it was written 10 years ago, I found Danna Korn’s book “Wheat-Free Worry-Free” to be helpful in the beginning.
One of the few very good bits of advice I did get from the doctor who made my diagnosis was to never trust the information you get from health food store employees. If they don’t have Celiac themselves, they likely don’t know what they’re talking about. I’ve had store employees try to convince me that Kamut was gluten free (it’s not!). Another outstanding bit of advice was to never, ever eat anything from a bakery unless it is a dedicated gluten-free bakery. No matter what claims they make, cross-contamination will be virtually guaranteed in a place filled with flour.
It’s incredibly baffling and frustrating in the beginning. We’ve all been there. It will get easier.
I stopped using the phrase Celiac Disease. I have an auto-immune disease of the small intestine and it restricts my diet severely. Hey, my friends and family have accepted that explanation. I am lucky.
Holidays are at my house and I am positive that our holiday meal is gluten free. We never want for a full and jolly holiday table. I just leave the table when the pies come out.
It does take time to get used to your new lifestyle, always does.
I feel very sympathetic for those folks suffering with Celiac Disease, and I’m going to live as best I can with the limitations of my auto-immune disease of the small intestine.
Find an approach that works for you and have fun with it as best you can.
Oh hun.. I know all of us have been where you are- scared confused , angry and overwhelmed. In the early days http://www.celiac.com and http://www.glutenfreegoddess.com were a great help to me. they both have a complete list of glutens and where all the hidden glutens are. GF Goddess has wonderful article on how to go gluten free filled with valuable info!- here is the link http://glutenfreegoddess.blogspot.com/p/how-to-go-g-free.html
I am actually self diagnosed.. it is long story but it started with Adrenal Gland Fatigue and spending two years trying to heal but not getting any better..then I found a wonderful book that advocated a Gluten Free diet for AGF- in desperation I tried it.. and wow is all I can say..after one week I felt better than I had in my entire life. But it was short lived.. for months even being gluten free I still felt like crap half the time.That led me to do some more research and realized I was at the vey least gluten intolerant and have been since I was very young.. or being the worst case I had this thing called celiacs that had never head of before.. ..about 6 months later, after more food issues came up and hours upon hours of research later and consulting with the head of My local celiac foundation about the symptoms of the disease- and in doing so she described me to a T.I was also working with my pastors wife who is a nurse. I was also finding out very quickly that I was getting more and more sensitive to gluten and that cross contamination was a very real danger- it’s been a long process to say the least. ..I realized without a shadow of doubt it was the latter for me-I indeed do have Celiacs..I never got tested because by the time I suspected I had it. I had been gluten free for months and was getting deathly ill from just a crumb touching my food, No way in the world was going to eat it on purpose.The tests are often inconclusive and you have to have gluten in your system for the test to be accurate. There was no way I was going back on it while getting sicker and sicker so a doctor can run all kinds of tests then say to me stop eating gluten it is killing you- um thanks, but no thanks! I already figured that much out on my own.There is no medical cure and from many stories like yours doctors know very little about CD anyway. So yeah we are on our own..but lucky for us there is a wonderful community of fellow celiacs that have been there and done that and are eager to help. Here are a few tips I can give you. Basics to look at for these are obvious but in the beginning we may not think about it as containing gluten- eat nothing made with flour- that includes breads, rolls, biscuits, muffins, cakes, cookies, pretzels,whole grain anything, crackers anything breaded like chicken nuggets, cornbread because it often has flour in it.flour tortillas. brownies.croutons,pancakes , waffles, gravies and soups made with chicken and turkey broths-unless the say they are gluten free- always read the labels and allergy warnings carefully every time you shop.. just because it says gluten free on the front doesn’t mean it is.My advice is to not eat out for a while until you get a handle of what you need to avoid.stick to foods that are naturally gluten free at first- unseasoned meats with no sauces or gravies, fruits and vegetables, nuts and potatoes.Keep it simple. Hidden glutens are tricky.There is a long list you can find on celiac.com but here are some of the biggies to watch out for- chicken and turkey broth, maltodexterin, modified food starch, carmel coloring,smoke flavoring,anything with soy sauce- most contain wheat. anything that is darkly or carmel colored like vanilla extract, worchesteshire sauce, colas, ginger ale, coffee syrups, BBQ sauce, steak sauce etc always make sure they state they are gluten free- if they don’t they probably contain carmel coloring and are not gluten free. This is overwhelming at first..but soon it becomes second nature.. Just take deep breath- you can do this! The first place to start is your own home- get rid of all the things that contain gluten.You may need to throw out some dishes and pans- especially anything wooden or cast iron. gluten can get inside the wood and hide in the cracks .It can get sealed inside of cast iron when it gets hot. THROW OUT YOUR TOASTER!! Just throw it out!. No way to get gluten out of those.For now that is all me and my hub can think of, Don’t get discouraged, it takes time to get the hang of things,but now you know- that is half the battle to being well and getting your life back again!
“Hidden glutens are tricky….. here are some of the biggies to watch out for- chicken and turkey broth, maltodexterin, modified food starch, carmel coloring,smoke flavoring,anything with soy sauce- most contain wheat. anything that is darkly or carmel colored like vanilla extract, worchesteshire sauce, colas, ginger ale, coffee syrups, BBQ sauce, steak sauce etc always make sure they state they are gluten free- if they don’t they probably contain carmel coloring and are not gluten free.”
I’m sorry, but this is absolutely false.
Read the REAL info about this here:
Modified food starch, etc….here…
Irish heart..I guess I should say from my experience.. I am not a doctor nor a dietian.. but from my familys and my personal experience and from many other celiacs I have talked to- there are many of us that cannot eat anything with carmel coloring or smoke flavoring-perhaps it is in the same cateogry of dairy, soy , HFCS and processed foods – while being possibly or technically gluten free but still not tolerated well by some celiacs..At best it is very hit and miss for a lot of people- these to me are risky ingredients that I personally choose not to take the risk on. Take from that what you will. Sorry for not clafiying that .If some can eat it – go for it.I can’t.
Saying something has “hidden gluten in it”
“these foods do not agree with me”
are really very different.
Newly diagnosed people read blogs and websites and get panicky
about foods that are not really going to gluten them.
I try to help Gluten Dude provide accurate information about celiac
and gluten and I was just clarifying it for the people who read his blog.
I am not trying to spread misinformation- everything I listed as a hidden glutten was given to me by the head of my Local Celiac foundation- granted this was two years ago nd maybe inforamtion has changed . I don’t know ..I do know this woman who has celiacs herself and and has spent years researching the subject. Every piece of advic she has given me has been spot on so i trust her judgemet.. and Again I have to state that in my experience it has proven to be accurate. that when ever me or my family have eaten anything with these items we get glutened..so I don’t know what to say.. I am not trying to stir up trouble or be difficult here. I want to help others feel well and be their best. I do know for us the legal limit of 20ppm is too much gluten for me and my family and things that are said to be gluten free because of the processing they go through are not gluten free enough for me and mine because we still get sick. .
Your not in the US are you? In the US there is no legal definition of gluten. In the US things like Carmel color, food starches, etc do not contain gluten. Usually they are corn based. If its wheat starch, it says wheat someone in the ingredients.
Not sure about your country but don’t want to spend rumors to the US people who have CELIAC.
I am in the US. Sorry .I am really not tying to spread rumors.. I am really not. Like I have tried to clear up- I have stated twice it has been in my experience and that is all I can say- maybe I should say me and my family cannot eat this items- which I have already stated once already but I guess it bears repeating. and I know other celiacs who also cannot tolerate them..- if you or others can.. I am super-duper happy for you. Talk it with a grain of salt.. sorry again.. .I’ll stop talking now on this subject because I really don’t want to argue . I’ve been glutened recently and am not in the best of moods and feeling a bit emotional. :/ Have a bessed day and be well.
I should say from my experience