So many topics to discuss: Pizza Hut teaming up with Udi’s, my daughter’s upcoming endoscopy, Coors Gluten-Free Beer, the (sad) PF Changs lawsuit, Cheerios marketing themselves as gluten free, and the list goes on and on. And I will get to all of these topics.
But right now I’m tired. And I’m not just tired, but I’m CELIAC tired. Been struggling for two weeks now. Not sure what the cause was. I ate McDonald’s French Fries and washed them down with an Omission Beer, but I’m sure that wasn’t it.
Yes…I’m just kidding.
So today, I just want to leave you with a fantastic interview that my friend and fellow celiac Jennifer Esposito did recently.
(If you cannot see the above video, click here.)
As always, I so appreciate her passion, her knowledge and her advocacy. She has put a wonderful voice to this crappy disease.
Lots of great stuff in the video but my highlight was her take on how to deal with your doctor. So many of you have shared your doctor horror stories when it comes to your undiagnosed celiac and your frustrations with the medical community. Too many doctors simply treat the symptom without taking the time necessary to find the cause.
Our system sucks. I know it. You know it.
You wait 30 minutes in the waiting room. Another 20 minutes in the doctor’s office. And then the doc walks in and asks you what the problem is. You have a few minutes to state your case and then he’s off to see another patient. “Oh…and by the way…here’s a prescription for a pill. Feel better.”
There’s an old song called How Can a Poor Man Stand Such Times that has the following lyrics:
Well the doctor comes ’round here with his face all bright
And he says “in a little while you’ll be alright”
All he gives is a humbug pill, a dose of dope and a great big bill
Tell me how can a poor man stand such times and live
Anyway…enjoy the interview and feel free to share your frustrations or your success stories with your doctor below.
If you need me, I’ll be horizontal.
Take it away Bruce…
Hey, Dude! It’s been awhile. I’m sorry to hear you’re not feeling like yourself. Could you be having an adverse reaction
to SNOW?? Jeez, winter’s been taking a round out of your part of the world. Not like balmy Alberta 😐
Thanks for posting this interview. As usual, Jennifer puts it so succinctly. I’m currently in the midst of a LOT of
dental work and so I’m bumping up against dentists and specialists who don’t seem to get the Celiac connection.
“I really do brush and floss a lot”. Sigh….
On that note I’ll, sign off, GD. Pound back lots of water, handfuls of supplements – you know, the usual go-to’s and
rest. Try not to despair, easier said than done some days but you know the drill. It does get better. Good luck to the Dudette.
Thanks Sue. Next winter, I just may be better off in Alberta 🙂
They’re just doctors. The smart ones know how little they know. Here’s my two tips. Get your gluten consumption way down: Processed food is not your friend. Take some Aleve
(Payment for services is expected at the time of your visit.)
1 year after my diagnosis I still struggle with doctors. But if anything, I’ve learned to walk in there with a list of what’s going on, bring my thick medical file with all my GI records and tests for the last year, and make sure I’m being taken seriously. If I find I’m not, next doctor please.
One final thing: I always get copies of my tests. I have found there are little things docs forget to tell you in the reports. It makes it easier to follow up later.
I found enough clues in one CT scan 2 years after I had it to wonder why no doc questioned why someone my age had osteopenia. If they had, maybe we could have seen the bigger picture sooner.
GDude
Don’t think you’ll ever run out of topics for your blog. At least you know CD is a marathon & not a sprint.
If everyone would “Listen” to Jen, our world would be a happier, healthier and safer place to live. Wonderful interview filled with advice from our experienced, knowledgeable advocate.
As much as I enjoy oatmeal in the winter, I discovered in Jan/Feb that I can no longer eat gluten free oats from a dedicated field on dedicated equipment. Third time after gf oatmeal in 1.5 yrs that my symptoms started showing back up and DH getting worse after 3 bowls in 1st week of Jan this time. I went on full cleanse restricted diet for 5 weeks and now clear again (after triscuit incident on Feb 3).
Just some personal experience if you can’t find a culprit for your current symptoms. Now I know why my emergency GF bars with advertised gf oats caused me problems. As you said, CD is a constant, never ending search.
Hope you feel better soon.
So interested to read this about the oatmeal! I kept getting my “itchy gluten rash” whenever I ate a well known brand of gluten-free oats! Of course I was told it must be something else, but no “gf” oats, no rash. Something else to watch out for, sigh…
Gillian, Thanks for your experiences too. Probably the same well known brand. I’ve read some Celiacs may respond to gf oats but I didn’t want to believe w/o my personal experience. However, either I respond to gf oats or the well known brand was not telling the truth about being really dedicated gf, which I didn’t want to believe either.
So we should listen to our bodies as Jen instructed and stay away from oats too, which is disappointing because I think the oatmeal helps keep my cholesterol levels so good.
Oh well, we’re mostly healthy and not itching which keeps us happy! I’ve learned to appreciate my immediate DH or otherwise I might not realize as quickly the damage being done to my insides.
Thanks again!
I agree with Hap here, GD. I am the same way, and for some Celiac’s Quinoa can cause issues, just like corn and, for that matter, nearly any other grain. For me, it was also eggs, so if you just are not feeling better still, you may need to rethink what you are eating. Just my experience, and I know it doesn’t apply to everyone, but just hate to see a fellow Celiac down without sharing what has happened with me and what I found to help.
Yes, oats contain a protein that can trigger the same response in people with Celiac that gluten does.
And keep in mind that our bodies are very complex! Even the best of physicians aren’t going to have all the answers! And many answers come slowly.
Speaking of terrible doctors…
When I was first diagnosed, my gastro’s office sent me this: https://twitter.com/betterinblack/status/411523933410586624. My gastro himself told me I didn’t need to be 100% GF all of the time…
Of course, I stopped going there!
Unreal…
I had a similar experience. Maddening!!
When you think about what a doctor does, it would take about 4 years of seeing them every couple of months before they “might” get to know you. They see you, like Jennifer said, for 15 minutes then they go on to the next patient. They are instructed not to do blood tests if they are not fairly sure the results will be abnormal. And, the blood tests that they do are totally non specific unless you request certain tests and have a doctor that will accommodate you, or you pay for the tests yourself. And that gets very expensive. They don’t go home and do research to try and figure out what you might have. They put your symptoms into a database and see what illness pops up, usually while you are sitting there telling them your symptoms. Once you are gone, the don’t give you another thought. I don’t think it is their fault, necessarily, it just is what it is at this point in time. I have been misdiagnosed my entire life simply because my body didn’t “go by the book”. And doctors were actually killing me with their advice to eat whole wheat for my “constipation”. Having undiagnosed Hashi’s caused that. And having Celiac probably caused that. Problem is, every human being has different genetics, so how could we possibly all have the exact same symptoms for diseases? Now that doctors actually work for corporations, and those corporations are usually owned by insurance companies, real health care is practically non existent in this country. You get health care when you are having an emergency. Chronic illness? Not so much. It is frustrating to think of the life I might have had if I hadn’t depended on doctors knowing what they were talking about, but hindsight is 20/20, and I just have to look forward and accept that whatever my life was is exactly what it was supposed to be.
” I just have to look forward and accept that whatever my life was is exactly what it was supposed to be.”
And THAT is the key to happiness.
My doctor? Paleo-freak. I told her I felt better on a low-carb diet (not realizing at the time that I was actually lowering my *gluten* intake). She squees at my inspirational story and hands me a list of foods to eat/avoid! “PALEO!” (As an aside, she mentions having another patient whose trigger-food was gluten. “He eats a piece of bread and gets all these emotional symptoms just like yours…but nevermind because you’ve found your own solution and it’s obviously PALEO!”)
So after about a year of PALEO! (where I was not only harshing up my gut with raw salads and way too much protein but also constantly getting glutened by nuts, shared utensils, and ‘sprouted’ wheat products) I was hearing voices, agoraphobic, malnourished to the point of jaundice, and suicidally depressed. Lesson? Listen to your body, not your fad-happy doctor. And no, this isn’t an indictment of PALEO per se–it’s of anybody who thinks what’s right for their body or anybody else’s is automatically right for mine. Especially if they have the authority that comes with a medical degree!
Also wanted to add–I just read your past post about the online hatefest a few weeks ago and wanted to extend serious thanks for taking that hit and continuing to blog. My mom (to whom I just read your list of “Is This Gluten Free?” foods) commented on how amazing it was that someone was willing to make this kind of information-sharing a part of their lives. It sucks that you got glutened (maybe the severity and tiredness were linked to the drama from earlier? No idea if that’s how it works, but I feel for you)–and I really hope Dudette’s endoscopy gives you some welcome and reliable answers. Best wishes!
Also posted on Jennifer’s Way
I tested positive 2/13/08, both genes, (GENETIC!! my family refused to be tested…parents, brother sister, daughter and granddaughter. My father was diagnosed with colon cancer in August…connection??). After years of being told I had IBS by gastroenterogists, (notice the plural). Twice I was told I did not have CELIAC! I was diagnosed at 58 I’ve been sick since birth with dairy allergy, eczema and unexplained stomach aches all through childhood, migraine headaches since the age of 12, fibromyalgia and chronic fatigue since 1984. I have osteoporosis. I’m underweight. All of these can be byproducts of celiac disease.
Not knowing that gluten free wasn’t enough, 7 years later, I am sensitive to all grains, and so many other foods after developing LEAKY GUT. I thought I was going to die a year ago when I was down to 84 pounds (from 92) and couldn’t eat anything without throwing up or having diarrhea. It was really scary.
I was religiously adherent to the GF diet, but ate in a sushi restaurant where they “knew me”. I got Glutened which started the downhill avalanche of frightening symptoms.
I don’t eat out at all now. I bring my own food when going to parties or friends homes, I don’t travel.
I feel like I’m just existing from day to day with not much to look forward to.
In this society much of social life is about and around food, when you can’t participate because food can be poison you are isolated. (Making Christmas cookies with a friend can mean a setback.)
I spend $300 a month on supplements a month, plus:
I go for IV supplements, Myers Cocktail with other supplements weekly at $75 per.
I go to an NAET practitioner to try to overcome the sensitivities at $40 twice a week.
I’m back to my 90 pounds.
So many of these health problems could have been avoided or at the least ameliorated with early diagnosis and honest assessment of what celiac actually looks like for late diagnosis.
This is not a new disease! It is a disease that the drug companies don’t have a stake in so it is largely ignored by the medical “professionals”. We the “it’s all in your head” patients live with the consequences.
Well, I’m not diagnosed… however having done my own research I believe I may have celiac. I first went GF because of long list of symptoms that I was trying to figure out what the cause was (atomic gas/bloating/brain fog etc.. and joint pain and stiffness that was getting worse and scaring me) I had read about gluten intolerance and saw so many of my symptoms I decided to try eliminating it to see if it would make a difference. Of course it did! I never suspected celiac at the time though. After being gluten free for a period of time and then having a couple of glutened incidents I started to suspect there could be more to my situation so I decided to have a gene test, and it came back positive for the DQ8 gene. I decided to talk to my primary doc about it. Showed him my gene test, my long list of symptoms that cleared up after GF and his response was that he only had 2 patients with celiac and they have DH, I don’t so therefore probably don’t have celiac.
I went to a gastro who on his website indicates that he is familiar with celiac. This time I bring a write up of my story (so I don’t forget anything) – what I was experiencing and what happened when I gave up gluten. At first I thought he might get it, but he asked if I had kids, I said one, he said well people with celiac have trouble having kids (therefore no celiac). He did mention SIBO… but then told me nothing about it or asked me any more questions that would have maybe clued into anything, I felt rushed through. I left feeling like I got no where. Then I found an allergist who again according to his website deals with food allergies as well as with food intolerance including celiac. So I go see him. He listens, pats me on the head figuratively because it seems like I get the GF thing and suggests I go see a nutritionist. I tried to make it clear to each of them that I wasn’t there because of an episode of Dr. Oz, or because Kim Kardashian said “gluten bad”. But I guess I feel like they were thinking ….”here’s another one….”
I realize in my situation there is no way for me to be diagnosed unless I go on a extended gluten feeding frenzy, (which I don’t want to do) but I guess I was looking for some sort of acknowledgement from a medical professional. At the end of the day, either way with or without a diagnosis – I have to be GF so do I need the diagnosis or the aggravation of trying to get one?
LISTEN TO YOUR BODY!
I have a kid a grandkids and celiac. As I said I had 2, TWO of ” THE BEST” gastroenterologists tell me I did not have celiac. I had one tell me I was anorexic!!!
Find another doctor. Find a doctor who listens and respects you.
Most of all listen to your body. If you feel better not eating gluten, do not eat it.
READ everything you can find so that you don’t spend years doing more damage to YOUR body. You only get one!
I wish you health.
Also posted on Jennifer’s Way
Sharon,
Thanks for taking the time to reply.
I do see friends when I feel well enough to go out or have them come to my home.
What I failed to express is that no matter how much you have explained to others about your particular experience with celiac they still believe that you only have to be GF and you should be fine.
“They think I should be fine.” The lack of education and the GF “FAD” clouds the issues of CELIAC REALITY”.
I don’t want to be the topic of conversation over a meal I am not eating, feeling like I am on the witness stand defending myself. I am talking about 20 year friendships and family! There are some of course who are more empathetic than others, but in general most people do not get it. They live to eat. I eat to live.
The sushi restaurant served me the wrong meal. I took one bite and knew, ran to the restroom spit it out and rinsed my mouth out. It still got me.
I don’t eat anything other than organic food that I prepare myself. I found a canned coconut milk without carrageenan or other preservatives “Natural Value”. I use it to make yoghurt.
I have modified the SCD, Specific Charbohydrate Diet, to my mainly vegan diet. I do not eat meat or poultry, eggs, dairy, nightshades, grains, etc. Either they have been identified as allergens for me or I react to them.
My whole point is that what you don’t know about celiac can do a lot of damage, so read everything you can find including other people’s stories about their experiences…Thanks. Jennifer!
The best medicine is educating yourself and listening to your body.
Find a medical practioner who listens and respects you.
I have learned that in Sushi restaurants they often put the “crumbs” from the tempura frying oil in the sushi — they call it “crunch.” Well…..duh.
Also, sushi can be cross contaminated from the utensils and board they are preparing it on.
This was a restaurant we had been going to for 2 years. Everyone knew me and was aware of clean surfaces, gloves, knives, etc. It was an accident (waiting to happen?).
Again I’m just saying educate yourself and decide what is right for your body.
I’m not willing to risk my health at a restaurant again.
Thanks.
Please tell me how I can get a definitive diagnosis for Celiac disease. I am gluten intolerant, with 2 of 3 genes for Celiac.
Would certain blood tests be needed? I have a long history, including Hashimoto’s Thyroiditis, and other symptoms. I have improved one thousand per cent since going GF, but still do not feel good many days. Please tell me what I need to do to see if I have Celiac. Thank you.
Bonnie, you have to be eating gluten for at least a few weeks for the tests to be of diagnostic value. It is possible you are still getting gluten, and that is why you don’t feel good still and, if that is the case, the tests could show a positive, but not necessarily. I also have thyroid disease and gotta tell you, sometimes that can be the cause of your not feeling totally well even after being gf.
My journey is a short one so far, but life changing for me, its been a year ago in Jan. 2014 I started having bad reactions to food, at the same time my long shoulder length, thick hair I’ve had for 56 yr.’s starting falling out, slowly at first but by March of 2014 it pretty much had all fell out, probably 85% of it( I also lost underarm hair, leg hair not complaining much about that). I started by going to a Dermatologist, who took a scalp biospy. I waited two weeks to hear it was Alopecia Aerta. She gave me a very short list of options, it just devastated me. I was trying to absorb the fact that there wasn’t a quick fix or pill for this, it was life long, could get worse. I could lose all my facial hair, eyebrows, eyelashes, hair everywhere, be totally hairless. I eventually got a wig to help with the hair loss. But the food allergies were getting worse, stomach issues, bowel issues, welts and hives all over, I pretty much itched all the time. Having anxiety attacks, panic attacks. I had found a AA blog site to learn and try to connect with fellow AA, AU, AB etc.. people, but noone connected with me, as they didn’t have the other issues with food I was having. In the mean time, I had gone to a normal MD, who tested me for many things, they all came back normal! So she didn’t have anything to add to help. I felt so lost and helpless. Drifting along. In my gut, I thought this has to be because of something I am eating, or not eating, or something toxic. So I started looking into alternative doctors and holistic medicines. I found a local clinic that tested me farther, they started me on a gluten, dairy free diet, also I had been tested for alot of foods and found I was having reactions to alot of foods I ate every day, pepper, eggs, bananas I could go on….. I have been on this diet since April of 2014 and feeling much better, living without most of those horrible issues, I pretty much know what foods I will react to now. I am so happy to say my hair is slowly but surely growing back. But my light bulb moment came when I was watching a TV show and Jennifer Esposito was on, descriping her symptoms and health issues. I immediatley got her book and bam,it hit me, this is me, the relief and dismay at the same time came over me like a tidal wave. All these years I have had digestive issues but I found a excuse for it , oh, it was food poisoning, I had food poisoning a lot, vomiting, bad cramps, diarrhea. Thin finger nails, I always found a excuse or a quick fix, the nails solution, was to put on the fake nails to comenstate for the loss of nails. But the worst of the symptoms did not start til the hair loss along with them, it seemed to intensify after that. I am continuing to go to my Innovative Solution Dr.., but I am sure I am a undiagnosed Celiac Disease person, but the thought of going back to eating gluten to be diagnosed is to painful, scary, to even consider. Not to mention, I have gotten used to feeling better, no digestive issues or not to the degree I used to have, I also have to wonder if it is the reason my hair is growing back, the diet I am on now. When I brought it up to my Dr. he said we have pretty much treated you with CD anyway. But even they did not test for it. It would liked to known for sure, but the symptoms are so much the same as CD that I am sure I have it.
I want to just say I am so glad all of you are here….esp. Jennifer and Gluten Dude. I read all these comments and end up nearly crying because I know how everyone feels and ALL the pain and anguish we go through with our foods and our stupid doctors. They are all horror stories when it comes to doctors. My doctor told me all these symptoms were in my head (along with my family) 15 years and near death a doctor FINALLY says hey maybe your allergic to wheat. I ‘m just GLAD I didn’t do one damn surgery that they all wanted to do because I now am feeling the best I’ve felt in 15 years. I Wonder how many people have had surgeries that they never needed? I bet there are many. Another thing that I believe has added to the wheat (and corn for me) problems for us in the U.S…….since the early 90’s they have been genetically made (genetically modified foods) God only knows what is in all of our foods of today. I try to eat only organic (so expensive) and meats from our meat locker (also so expensive) but it makes a great difference. Oh something else I have learned-when you buy organic veggies make sure the little item number starts with a 9. If the item number starts with a 4 that means that there are some chemicals -just under the requirements to say its organic. I am allergic to all chemicals also so this was very important for me to learn. I hope that helps someone out there
Jennifer, I would love to buy your bagels etc. but I see that you have corn in most of your products. So its not that I don’t want to buy from your bakery-I just cant. God Bless you all and know that you are not alone….we travel the same road…together.
Sara
OH NO … GLutenDude, not horizontal,
Did you forget to use your “Glutten Cutter”????? LOL
If the pharmaceutical companies have it their way, we will soon have a “pill” for Celiac.
Perhaps then it will get some attention – although I doubt it will be anywhere near the proper attention.