First things first. Happy Birthday Bruce. 65 years young and still playing 3 hour shows. I ain’t here on business, baby, I’m only here for fun.
Ok…moving on.
Do you know there is a woman with celiac disease who has supposedly trained her dog to sniff out gluten?
She says that one time she bought gluten-free chips but the dog reacted to the package and then she realized that instead of the chips, she mistakenly purchased gluten-filled crackers.
And now she brings the dog to the grocery store, on vacation and even to restaurants. Yes…restaurants.
Give. Me. A. Break.
Look…being a celiac makes us a lot of things.
It makes us sick more frequently then we’d like to be.
It makes us plan almost every meal ahead.
It makes it more challenging to be spontaneous.
It makes us “defend” gluten-free as real and necessary.
It can make us tired, cranky, brain-foggy, blah, blah, blah.
But one thing it does not make us is a victim. And we need to stop portraying ourselves as such. We’re not helpless folks. We have a disease that can be managed with food.
Do we need to be extra careful? Absolutely.
Are we gonna get hit once in awhile? Yep.
Does it suck? You bet.
But does it mean our life is unfair? Hell no.
Someone left the following comment on a blog post the other day when things got a bit heated about whether celiacs should be treated as having a ‘disability’: “This website was created to make us understand that we are not alone, that we do have a disability and rights we have to fight for.”
Well…two out of three ain’t bad.
Yes…I created this site so no celiac has to feel alone.
Yes…we do need to advocate to get our disease taken seriously.
Yes…I don’t paint a pretty rainbow-wrapped picture of celiac disease.
Yes…we all need to rant once in awhile.
Yes…I am here to listen to those rants.
And yes…I feel your pain.
But this is not a “pity party” site where we all feel sorry for ourselves. It’s a site to be heard…to be understood…but most importantly, to be empowered!
I have never claimed that I have a disability (though I know in some situations like school, it can and should be treated as such). I have a pain-in-the-ass disease that I wish I didn’t have.
But you know what? I can live a pretty normal life.
I don’t need a dog to tell me I purchased gluten-filled crackers. I just need to make sure…wait for it…that I don’t buy the gluten-filled crackers in the first place.
If there is one thing this summer has taught me, after watching Mrs. Dude deal with her cancer, it’s that it’s so easy to get wrapped up in my disease. But once you put it in perspective, you come to realize that it’s a disease that can be managed.
And the recipe is pretty simple: a dash of common sense, a splash of diligence, a pinch of self-control and a dollop of acceptance.
Mix it all together and you’ve got one strong celiac.
Try to be that celiac.
“DO. Or do not. There is no try.” Yoda (and IrishHeart)
You know how I feel about this whole topic, so I’ll just go back to drinking my coffee.
It’s gluten free (no matter what anyone says) and it’s delicious.
Gluten sniffing dog…that one shot right to the top of my “stupid stuff that people say about gluten” list. (and that list is really, really, long)
GLUTEN DUDE
That dog was trained for the very reason this blog was made. So as not to be a victim. A lot of the facts from the story were left out here or severely twisted.
Whats up with that, you complain about press and twisting of facts and you did that very thing for your own purposes.
You are complaining about the woman who trained the dog whining and that’s is not why “THIS” page was made
Well I don’t see her whining on this page, I see someone else whining because she trained a dog.
And you say,yes you get sick, yes you suffer through it. Well when you get sick every one around you gets sick.because it does effect everyone. So if a dog’s can prevents people from getting sick???
Kind of a no brainier!
Some people with diabetes have a Service dog. Others are able to manage their disease without a problem. Every persons illness varies in severity.
As far as the restaurants go, That’s the best use for the dog of all. Study s show Celiacs get sick from cross contamination more than 30% of the time when they eat out. That’s is more risk than most celiac are willing to take, so they don’t go out to eat To me that’s unacceptable! That is being a victim!.
And sorry to inform the non- supporters of Celiac service dogs, Here they come
There was a dog trained for this 5 years ago. There are 6 other gluten detection dog’s that I now of in training with 4 different service dog company’s.
I hope they all succeed.
I heard from one of my online support group that she got glutened 66% of the time she ate in restaurants, and another 90%. For me it was 100%, 2 out of 2. I ended up with 44% traumatic brain injury after 3 accidental glutenings. I got gluten ataxia and a whole lot of other autoimmune diseases. Who was it that said “my celiac is not your celiac.” I think it was Jennifer. As Dr. Marios Hadjivassiliou said, celiac disease turns neurological in your fifties. You don’t think I’m disabled? Less than 3% of applicants to social security disability get approved in Illinois on the first round, as I did.
Dude, you are lucky you got diagnosed at the age you did. If I had, maybe I would be singing the same tune as you. Maybe if I had been lucky enough to get married and have kids and thus a support system, instead of being rejected by every woman I ever loved due to my disease. Maybe if I had the rare priveledge of having a knowledgable gastroenterologist who researched instead of playing golf, or anybody, or the invention of the Internet…
I am a 10 yr + Celiac and still learning. I have recently, in the past few months, discovered that I can not use anything on my long beautiful curly locks that has gluten in it. You would be amazed at all of the gluten we have been putting on our largest organ, our skin. After months of antibiotics with no results, I figured it out myself. My hair literally hurt to touch my skin. My point is, I would love to have a dog that could tell me that I cant use that shampoo, etc. The FDA said as many times as they have to change the name of gluten they will continue to do so because it is the most marketable and addictive food additive there is. GIVE ME MY DOGGIE DOG PLEASE. If you have information on where I can get a gluten sniffing dog, please let me know. JoAttyy@gmail.com. We are so strong to live with such a silent killer. I love life and I will not go down with out a fight. OH, P.S. I love to eat out !!! I look at the menu and make up my own dish from the ingredients I see they have available. It is fun actually.
Totally agree with you Kai’.
This is the first time I’ve read through the comments and noticed some of you write about muscle wasting. I had muscle wasting when I developed autoimmune hepatitis 20 years ago but I don’t think I ever read about celiac and muscle wasting. Thank you! I learned something new today!
The muscle wasting is most likely from the autoimmune disease sporadic Inclusion Body Myositis. The DR3 gene that comes with the HLA-DQ 2.5 celiac gene makes us vulnerable to that if we have undiagnosed celiac for too long.
Thank you so much for posting this. I am so tired of the woe is me, my life is over, depressing victim mindset some people have. It’s an illness we can manage, you can still be social, you can still enjoy your life. Empower yourself to manage your illness, heal yourself, and enjoy your life. I’ve seen people with worse illnesses than Celiac disease live fuller lives with more positivity than some people in our community.
As ridiculous as it is to get a dog to sniff out gluten, I’m extremely impressed that this can actually happen.
Aren’t animals amazing!
LOVE this post! As someone who has ulcerative colitis and celiac, I have a similar view. It sucks to have celiac but the ability to manage celiac with a disciplined diet is a walk in the park compared to what I deal with trying to battle UC.
Same here. I’d love to just have celiac. Can I have an animal for my UC?
I do not have celiac, my 6 year old daughter does (so did my now deceased mother and grandmother). We are 100% GF household since she was diagnosed over 2.5 years ago. She has never had a single outward symptom. Not one. But her villi were pancake flat. If and when she gets cross contaminated there is no way for us to know at all until we do the next blood test. Which means if she gets “glutened” it is not so simple to even narrow down where it came from.
It took her over 2 years to have normal TTG IGA numbers. And that was only after four months before her most recent test of no Indian spices (we are a half Indian family), no lentils or beans unless certified (I’m aware of only one company that produces some certified beans and lentils), no eating out in restaurants and other peoples houses.
We haven’t had pity parties, though we have certainly had tears when she can’t have what other kids have, because, you know, “it’s not faaiiiiirrr.”
Anyway, I write this because i quibble with your assessment of the gluten free dog. Yes, using such a dog to tell you if wheat crackers have…gluten, is moronic. But using such a service dog to tell you if the GF dish they serve you at the “GF friendly” restaurant is actually GF? I don’t see the problem with that. And i don’t see how such a dog for such a use makes one a “victim.”
As the father of a wonderful, happy and healthy little girl what breaks my heart is the social difficulty that certainly will come at times and the impediment to travel and exploration of the world. Is such travel and exploration impossible? no. VERY difficult? yes. and if such a dog can help, then I’m all for it. (and i’m not even a dog person.)
I admit, as a father my heart breaks for my daughter in a way that it doesn’t for herself-at all. she is mostly absolutely fine with having celiac. But i suspect that will change in some ways in her teen years.
We’ve done some research on these gluten sniffing dogs, and our jury is out as to whether they can really work, but we certainly aren’t dismissing the idea or possibility; certainly not because someone else used the dog in a silly way.
Daniel, what is the company/site for certified GF beans and lentils? (Or anyone else who knows of such a company). I haven’t had lentils since diagnosis since everything I read says they are so likely to be cross contaminated. Thanks for letting me know! The only one that I knew of (Shiloh Farms) closed down that section of their company several months ago. I’m glad your daughter is doing well!
Edison Grainery. all organic too. based in California. family owned and run. very reasonable prices, in my opinion, and free shipping over $50.
http://www.edisongrainery.com/store/home.php
btw, i’m not very pleased with the “nutritional” advise given by some celiac nutritionists. Not only do they not warn you of lentil and bean cross contamination (lentils are routinely rotated with or grown next to wheat) but they tell you to eat more now that you are on a GF diet.
Thank you for this insight. I too was never told about lentils. I agree, my nutritionist didn’t have it together on celiac. I was amazed that she pushed all the GF products right up front. Thank goodness I couldn’t afford it and going whole foods proved healing.
to be clear, i’m not saying non labeled lentils are not safe. but for our daughter we felt we needed to get certified ones. and in researching i was surprised to learn how close they are to wheat in the field and in the combine at harvest.
Thank you for this about the lentils! I just recently and stupidly glutened myself with contaminated lentils. I actually picked out the grains of wheat/barley from the dry lentils before I washed them off and cooked them, stupidly thinking I’d be okay. Well, I’ll tell you, a couple of days later I was okay, but oof, what a way to learn.
Thank you so much for this information! I have been told so many times to eat more lentils, beans, etc. (but blank stare when asked about finding non cross-contaminated ones) since being diagnosed two years ago.
I agree with the fact that celiacs are not victims and some of the other stuff you said but I don’t agree with “celiacs is not a disability.”
http://www.thefreedictionary.com/disability
2. a physical or mental handicap, esp. one that prevents a person from living a normal life or from holding a specific job.
After I graduated culinary school I found out I have celiacs. I can’t work in a commercial kitchen because of it.
My daughter has a 504 plan (students with disabilities) at her school for her celiacs…
Just my thoughts.
I understand your frustration about “commercial kitchens”, Stephanie, but you are still capable of working as a chef. I am afraid I disagree with you that this qualifies as a disability.
504 plans are a separate issue.
I only brought up my inability to work in a commercial kitchen because of the definition of a disability. It took me 4 years (mostly because of the economy) to find the right job but I now happily work for a wonderful restaurant management company. At some point down the line I hope to open a gluten-free restaurant with them but until then this is the closest I can get to a commercial kitchen.
Ps. When I get near gluten I break out in hives.
To be clear, though….Just being” near gluten” is not a symptom of celiac, though. You must have a wheat allergy on top of things.
not arguing with you, by the way 🙂 just talking.
My doctor thinks it’s ether a wheat allergy or an allergy to the chemicals used in the ‘flour making process’ (growing to harvest to storage) on top of my celiacs diagnoses. I’m allergic to a LOT of things. I’m sorry if my last post was unclear.
I see. Thanks for clarifying. Sorry about the “celiac add-ons”. I’ve got a few of those myself.
Celiacs and food allergies are named in the ADA for a reason, and I have, too, struggled with wanting to work in a restaurant or kitchen and not having been able to find one that I can safely work at. There’s also things like traveling for a living – which is ok for me if I can do the plans and use my ADA status to get extra hotel allowance and days. If it is a group travel event like a sales conference, I’m hosed. I have, to date, not attended several company events because I just couldn’t make the logistics of eating well – so that I could function normally – work. I can’t go downstairs and grab a bite to eat that is balanced, I can’t go out to eat with my coworkers and build rapport unless I want to play 20 questions about why I’m not eating or why I brought food. Coworkers often feel like I’m unfriendly just because I don’t want to eat in front of them. When it comes to peer reviewed performance, that can really hit the pocket book and promotion trajectory.
I think part of coming to terms with having celiac disease is realizing that you’re responsible for dealing with it. We all know that it requires dietary changes. And it may mean that you have to change your employment. You may even have to change where you live so that you can get agreeable employment. It can be disruptive, but if you truly want to get to the point to of a comfortable life, you almost certainly will need to make some changes, and give up some things.
There’s no getting around it, celiac disease takes some things away from you. Permanently. But you’re responsible for maximizing (or optimizing, or whatever) your own happiness, or satisfaction with life, or whatever your metric is.
Celiac disease is not fair. And if you have the will (and maybe the anger) to do it, invoking the ADA against some organization may work for you. But I’d rather expend my effort on finding a congenial situation, than sticking it to whomever it is that makes it uncongenial for me. And working within an organization that you’ve had to force to accommodate your needs can’t be a good thing.
Dick,
I always appreciate your commentary on this blog. 🙂 I recognize you as a regular who has common sense and a good sense of humor.
May I suggest something? I have been on several forums and served as a moderator as well and before you continue to take time to post rational responses, please consider that sometimes people post on blogs and forums to create controversy. They post several things in a row, hoping to cause a fuss and get people arguing.
Let’s just say that I recognize some of the “pattern”.
All the best,
IH
IH,
Thanks for the kind words. I know I can get sucked in sometimes, or take things literally that were not meant that way.
But sometimes I like to vent a little, too.
Dick
I understand completely, Dick. Venting is good sometimes
and I did not mean to interrupt.Carry on, sir. 😉
All the best, IH
I’m nineteen and I 100% support that celiac is a disability. I have such an intense reaction to touching gluten that i am unable to work in ANY food or fast food location, I am constantly sick, I struggle to maintain a decent average due to brain fog, and just being sick all the time. If the Canadian government can accept celiac as a disability, (thank god) then so should celiacs. For older celiacs it may not be as important, but for youth and students it is so important to have older celiacs supporting our right for protection and rights, which unfortunately need to be defined as a disability to count as “relevant” to all systems within education systems as well as the government student funding programs.
Daniel, I buy from Rancho Gordo. The beans work for me, not the quinoa, and I haven’t ordered lentils.
Derff, the link
http://www.ranchogordo.com
thanks. might be safe but they don’t make any gluten free claims, do they? plus they don’t do lentils. but looks like they got some good stuff and if it works for you, fantastic!
They do. Call them. I’m very sensitive, and haven’t had a problem with the beans. The prices, I have some problems.
You just don’t have a clue. It is not moronic to make a mistake or even forget to read a label. After my brain damage, I could not even sort laundry by color and fabric, despite having worked in 3D computer animation and digital visual effects.
Besides a main celiac gene on chromosome 6, you have to have a zonulin upregulating gene on chromosome 16 in order to get celiac disease. Zonulin is what increases your intestinal permeability by opening the tight junctions between your epithelial cells on your micro villi, letting the gluten peptides into your bloodstream. If your permeability is so bad that you get a leaky brain, and your immune system starts attacking your brain, guess what? The immune system in your brain is completely different than the immune system in the rest of your body and is hard to turn off. It could completely waste away your brain. There are many celiacs who have a shrunken cerebellum and/or cerebrum. You are born with all of your neurons, and any that are destroyed are not replaceable. All you can do is make new connections between your remaining neurons. Getting back (or forward) to that case of the 16 year old girl whose mother thinks”a little wheat won’t hurt.” For some celiacs, that’s like saying “Aw come on, let me shoot you in the head with a 22. A little bullet won’t hurt.” I got brain damage that wiped out most of my memory for years. I had to relearn the English language, very much like Bob Woodruff of ABC news when he got shrapnel in the head in Iraq.
I know of a case of a 22 year old woman who was in a wheelchair from gluten ataxia, and even an 8 year old boy.
I’m here to educate celiacs and parents of celiacs that the disease is not just something that destroys small intestinal epithelial cells that get replaced every 5 days, and then you are fine. The nutritional deficiencies are not because of a case of diarrhea. It’s a lot of damage that keeps going deeper and spreading, kind of like cancer. Dr. Joe Murray said that it can take 9 years to heal that small intestine that is more than 20 feet long, because it heals from the bottom up.
I have NEVER felt like a victim because of celiac and you know, sometimes I’m an a**hole cos I just am. I just found out I need a lot of dental work done ( “this” is just the gift that keeps on giving) and then saw a story of a little child that has a rare condition that makes her tongue keep growing and she needs extensive surgeries in order to LIVE! Hello! No big deal on my end.
Gluten sniffing dog – oh, I’m gonna have fun with that one!
same here Sue…I’ve got a million dollar smile….arggh
I can’t get my blood work to be in the normal range, even though I am really, REALLY diligent. There are some meds I have to take (Celiac isn’t my only autoimmune disease) and I suspect they are the culprit. But there are no laws about meds, and so I am stuck, and still have the neurological symptoms that I get from my Celiac, as well as still having malabsorption. Because of that, I am a bit disabled. But if I could get my numbers to normal, and my symptoms to go away, I would never consider myself disabled. At a disadvantage sometimes? Yes. Would it be nice to know that the food I get in the hospital is truly gf? Yes! Would it be great to KNOW my meds aren’t contaminated? Yes! So, if we need this to be considered a disability in order for that to happen, I am all in. But I am not a victim. But that dog might come in handy for me, unless he can only sniff out crackers labeled as wheat crackers. I can still see out of one eye enough to read labels.
And I just put that comment in the wrong place, so I will add that I am about to spend about ten grand on my teeth thanks to Celiac. Still not a victim, though.
Deb, I don’t know who you are, but I like your comments.
I don’t know how long you’ve been GF after Dx, but hang in there.
It took me a very long time for things to “normalize” and I have been in physical therapy and having medical massage and rehab for nearly 4 years to get my muscles rehabbed. They were nearly atrophied.The neuropathy is greatly improved, too.
Still grateful to be alive, still never applied for disability, and still refuse to embrace the victim mentality.
14 years gf after 47 years of being undiagnosed. I can’t get my muscles to “tone” for the life of me. Wish I was rich, or had good insurance so I could try some of the stuff you mentioned, but I still have damage in the gut, so I don’t know if it would help or not. I am game for anything, though. Life happens. We all have our “lots”. No victims.
Just to clarify: I’m certainly not rich and insurance stopped covering the PT a long, long time ago…. but if I don’t do this, I won’t walk at all.
It’s grueling, but needed to be done.
I wasn’t trying to say everyone should be doing it, I was just telling you what I did to recover.
Irish heart, I have a question. You mention atrophy in your legs. That sounds exactly what I’m going thru. I hearniated my L5s1 disc Dec 7 2012. Since then I can not get my leg back as they were. I blamed it on my back. Now I wonder. How does gluten effect this? Because no matter what I do they hurt. I work at a job that should keep them exercised. But each day they are so stiff. I’ve started taking a good magnesium supplement and does help with the pain. But it is as if my muscles are always to tight. Gluten sure effects a lot. I also noticed on GD,s diagraphm of the body and most symptoms people have that burning scalp is one of them. My scalp has burned 24/7 for the last 3 1/2 years. Doctors are clueless. Anyone else with this issue? It’s truley amazing at what can get use to living with. I would say for me the one food I miss is a goog saltine cracker. Yum yum
Oops I really need to check my spelling
A herniated disc can cause many problems, but not muscular atrophy, as far as I know. Atrophy is an extreme form of muscle wasting.
My muscles/connective tissue problem results from 25+ years of undiagnosed celiac disease, malabsorption and vitamin deficiencies.
I has a 90 lbs. weight loss, neuropathy and ataxia.
It’s been a long recovery, but I just keep going.
I don’t buy into the “my celiac is different from your celiac” much anymore. The fact that gluten causes damage to the villi in the intestines is the same basic fact for all celiacs.
The symptoms may manifest differently, yes, and the recovery rate may differ as well.
We share one common denominator: gluten damages the gut lining.
Everyone should read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. Don’t buy into everything you may read on the internet. Knowledge is power and being your own best advocate is a very good idea.
Thank you Irish heart. I was afraid the back was unrelated with the legs. I also have malabsorption and decficencys and neuropathy. I’ll have to lookup ataxia not familiar with that. But I will check into the book. The internet on celiac can be very confusing. But again thank you.
Don’t buy into everything Leffler says. Gluten is an addictive drug, and I like to say”it’s the gluten talking whenever I hear the glutenoid gastroenterologist speculating about what gluten cannot do. Of course everybody cannot believe the damage it does unless it happens to you.
Gah! My comment there at the end was supposed to be a reply to this. Stupid technology.
Deb, you wrote, “But there are no laws about meds….”
Can you hear the hammering and sawing in DC? Keep an ear out.
http://www.gpo.gov/fdsys/pkg/FR-2011-12-21/html/2011-32551.htm
It’s funny when I’m hanging out with friends and I order a cider. They sometimes look at me like I’m on the cross. It’s not the worst thing in the world. Especially over ice. It’s not the what, it’s the who.
So I explain myself to servers and hope they get it. So I spend more on food. So I get sick once in a while…
I have a choice. I could have lived my whole life without knowing I have celiac, like my mom did. I would have been sicker, and would possibly die sooner, but would I have been any less happy? No. Unequivocally, no.
Celiac disease is just a series of potholes on the road. Once in a while, I get a flat. But flats can be fixed. And potholes can be avoided.
How much is in a dollop?
bigger than an eence and smaller than a blob. You got this!
Yeah, we got this.
I probably should have said celiac is a highway jammed with broken heroes.
…on a last chance power drive.
Nicely played!
Oh, oh oh, you guys are on fire
Agreed!
Is it a disease? Yes.
Is it a disability? Not so much.
I think sometimes people forget that those two words have different meanings.
Honestly? I’d have said, “Why do you need a gluten-free service dog,” until very recently. I usually don’t travel, but I was lucky enough to go on a trip to Juneau, Alaska, recently. I had to eat out some. I didn’t get glutened. What did happen, though, is that I was the only one of our group that got food poisoning.
The restaurant that I think was the food poisoning culprit gave me, “their only gluten-free dish,” which seemed like something that had sat on the stove for a few too many days.
I think we need the service dog to sniff out gluten so we have more options when we travel.
Also, “Yay dogs!”
I think you’re wrong on this one. I’m not sure how using a service dog makes this woman a ‘victim’ – technically, celiac IS a disability and is considered one under the ADA. We also all know that sensitivity levels and reactions among celiacs are different, so I can see how someone with trouble healing and/or a really serious reaction to contamination would be interested in this. Yes, the cracker story is kind of dumb and presumably she would have realized her mistake before eating them – but what if she’d bought cookies labelled ‘gluten free’ from that bakery you’ve called out a few times?
I am using the word “victim” here as something that is self imposed.
Can you imagine bringing a dog to a restaurant to sniff your food? C’mon. I’m sorry, but to me it’s overboard.
No, I’m not going to get a service dog and start doing this myself. But I’m not going to judge this woman for doing it, either. And I’m still not sure what makes her a victim. Perhaps she’s just more sensitive than most.
“She felt trapped in her own home, so afraid of cross-contamination that everyone and everything seemed like a threat.”
This woman has created her own disability by being unrealistically paranoid,IMO.
There is absolutely no need for anyone to think this way.
But because I can’t seem to get my numbers down, I feel like that woman. Doctor keeps saying I must be cheating!! Absofreakinglutely not!! I have been gf 14 years, and because I can’t figure out where the gluten is coming from I am a little paranoid. Still not a victim, though. But I sure wish I was like you guys here who have it so under control. As of yet, it hasn’t been that easy for me to not have symptoms and positive blood work.
I believe you aren’t cheating 🙂
Are you sure there’s nothing else going on with you?
Positive tTG numbers can be from other conditions.
If tTG is still high after a long time, aside from gluten sneaking into one’s diet, this may simply mean, especially with low titers, that it’s falsely elevated—common in patients who have other autoimmune conditions, such as chronic liver disease, Type 1 Diabetes, Crohn’s Disease or thyroiditis.
Symptoms can also come from other disorders.
What did the follow- up biopsy reveal?
They won’t do one. I am surrounded by knowledge challenged doctors. Seriously, I think some people just get lucky in finding the right people to treat all that can go wrong with Celiac. Point me to research that tells them the ttg can be raised without villous atrophy!! Please 🙂
http://www.cureceliacdisease.org/archives/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet
Thank your ever loving Irish heart!!!
Deb, I am so sorry to hear about your struggle with bloodwork. I started visiting one of Gluten Dude’s celebrities, Jennifer Esposito and her site “Jennifer’s Way”. She recently posted something similar regarding her inability to get her numbers down. Check out her comments on the “Missing Link” at
http://jennifersway.org/frustrated-celiac-missing-link-mtrfr/
The MTRFR stands for METHYLENETETRAHYRDOFOLATE REDUCTASE GENE OR ENZYME. Something to think about.
Thank you, Jen 🙂 I have read her book, and honestly, it was the first time that I really felt that there were other people out there that “got it”. Her site led me to this site. I cried reading the book, because it was like reading about my own life. I follow GD for the humor here. I am waiting to get in to see my Naturopath (only doctor that knows much of anything about Celiac around here) to discuss this MTHFR with her. I joke to people that I am actually from another planet and that is why I can’t eat the food or breathe the air here without a reaction of some kind (I am allergic to almost everything). You should see some of the looks I get 🙂 Gotta laugh. It is a wonder how far a little compassion and empathy can go when you are challenged with disease. I thank you for yours.
That MTHFR gene has absolutely
nothing to do with elevated tTG numbers, though.
I did not know that. Thanks for the update. I am a newbie, diagnosed this past Christmas. Eager to learn more.
Hi Deb, I’m also too sensitive for most GF foods, so I eat mostly basic stuff like veg and fruit. But I’m very careful about salt, pepper, oil, meats, etc. Shall I list some things? Dude, you can strike this list if you wish, as I’m going to name brands:
Oil, Bertolli and Berio olive oil (no other commercial sources)
Salt; Redmond Real Salt, Kirkland Himalayan Pink Salt
Pepper; McCormick whole peppercorns, you grind it
Spices; only fresh, no dried
BirdsEye peas and corn
Potatoes; go nuts
Chicken; Murrays(available in the US northeast) and Coleman whole birds at Costco(in the individual body bags)
tofu; House Brand
red meat; I buy the stuff at the local supermarket
Cheeze; here’s where I cheat. One brand, Andrew&Everett, I can get away with some of their Swiss. Their cheese varieties are GF.
Coffee; I roast my own, I get raw beans from the coffee department at a StewLeonard’s here in the NE, and use a Nesco roaster.
Tea; no I don’t
Sweetener; Equal (in sachets from Costco) otherwise my only sugar is in the fruits and veg I eat. Really.
Coke/Diet Coke; I never have a problem with them. Oops, is there sugar in Coke?
This is my solution, for me. A family member with Celiac can eat more of the processed GF products and not get symptoms, so your mileage may vary. Anyone can use these products as a way to get their gluten load down. I don’t drink milk and don’t take supplements. My symptoms went away on this diet; even my asthma. I got better sensation in my fingers and hear better. I think better. I don’t have stomach pains or tiredness.
Oh yes, booze (now you’re listening)
Tito’s vodka; Costco
I hope this helps a little bit, Deb
Hello el Hefe. I eat whole foods. No packaged gf unless I have no choice, like when traveling. Organic only, and no GMO. Only hard cheeses. No milk or other dairy. No soy. No corn. No oats. I bookmarked your link to the beans. I really think it is the meds, because I still have gliadin ab as well as ttg. Endomsial is now negative, though. That’s a plus. My total IgA is off the charts, so I don’t know. Sounds like we eat the same foods. Should share recipes some time 🙂
Deb, I left this comment for you above inre meds. I don’t wish to give anyone false hope, though I do more than hope.
Deb, you wrote, “But there are no laws about meds….”
Can you hear the hammering and sawing in DC? Keep an ear out.
http://www.gpo.gov/fdsys/pkg/FR-2011-12-21/html/2011-32551.htm
I wish I could eat cheese. When I travel I bring food. In an emergency it’s RedBull/Coke and bananas.
Red Bull and Coke would kill me, lol. I too bring my own food when I travel, just sometimes I put Kind protein bars in my purse for emergencies. Or gf rice crackers. Apples, bananas, grapes work well, too, but I forget they are in there and then, whoa! What a mess.
red bull and coke are not food lol
and if your gut hurts, it’s likely that crap causing it.
Love, mom
Interesting about Coke and RB. They both claim GF, and I have no issues, though I may drink one a year. Diet Coke, I’ll have more of. But not tummy troubles.
As to causes of elevated IgA, there are 48 different diagnoses. They are divided into infections, neoplastic disorders, autoimmune disorders (RA, Lupus, etc), neoplasms, congenital disorders, immune deficiencies (e.g., Wiskott-Aldrich, etcetera), poisonings (acute alcoholic hepatitis), and gastrointestinal diseases such as gluten enteropathy.
Just because those numbers are elevated, it does NOT mean GLUTEN IS THE CAUSE.
You could have any number of things going on.
Can I take you to my next doctor’s appointment?
Wish I could escort you, Deb, but you can arm yourself with this information and make your point without me. 😉
Go get ’em tiger. Find out exactly what is going on!
Deb, this post is old, but if you do see my response I just wanted to say that you are not alone. My daughter was 9 when diagnosed and her numbers were so high Duke had them checked in 4 other labs to verify. She is now 15 and her numbers a miles away from normal range. Specialist now believe that they may never come down to “normal range” I found this post while researching alert dogs. Both of my daughters are celiac and have extreme reactions, not just physical but also emotional and one even has short term memory loss. If I can get an alert dog I will, I don’t think that makes my girls victims, it gives them control over their health and empowers them to go and do simple things like an impromptu sleepover, or try a new restaurant while traveling without fear. If it works for you and helps you take back control, then isn’t that the opposite or a victim? I hope you have found a solution.
I’m getting a bit angry at the judgment here on this post. The concept of victim implies that we have no choice about what has happened to us, and the bile this post seems to be creating makes me feel sad. To anyone reading this and not feeling the LOVE, I like you and your dog and your ADA status just fine.
Love the post! Nope, I don’t consider myself a victim and I couldn’t see one of my two dogs sniffing my food for GF. It is without question that having CD can be daunting. I tell people not to worry when they feel as though they cannot accommodate my my diet restrictions. It’s my responsibility and I need to strategize not them and if it means bringing my own sack lunch or dinner, so be it. Afterall, I go to their home to visit them not eat their food. A relationship doesn’t have to be subjected to food restrictions. I still admit, I enjoy reading the rants but work towards keeping a positive perspective.
why is that overboard? unless the restaurant is 100% GF, of which there aren’t many, then you are walking into a cross contamination minefield.
i would think you would say that never eating out is also overboard, but eating out is high risk for people with celiac as you well know. so what is so wrong with this level of precaution?
why is a line drawn there?
You won’t catch me eating in a restaurant. But it is like some kind of right to lots of people, I guess. I rather think of restaurants as a luxury item, notwithstanding fast food joints.
//Can you imagine bringing a doc to a restaurant to sniff your food?//
I can’t imagine allocating the time and expense needed to travel with a service dog that way, even though many travel and service vendors make accommodations for service animals.
But what I can imagine is a cell-phone-sized device that would do a reasonably quick analysis and tell you if something is safe or not. Maybe like some of the glucose meters, but where you’d stick the food instead of yourself.
Sounds like a business opportunity to me.
Dick
There is already one https://nimasensor.com/
The only way to teach celiac kids that they are not victims is to tell the truth, that 47% of all Americans have a main celiac gene, that there are many other gluten sensitive genes in that locus, with only 1% of Americans not having a gluten sensitive gene in that locus. Furthermore, that researchers in India have discovered 100 other genes on other human chromosomes that affect gluten sensitivity. That the Finnish and Swedish researchers have found more than 60 other genes affecting gluten sensitivity. And that the media, the glutenoid celiac specialists who keep pushing the idea that only 1in133 have celiac disease is a lie, because, first of all, it was based on a blood test that is only accurate if there is complete villous atrophy. Kids, you don’t have bad genes. The HLA-DQ 2.5 conferring the highest risk for celiac gene that over 90% of us have has not changed in at least 70,000 years. The practice of eating wheat and related grains is defective. We have a really robust and awesome immune system. I have not had a cold or flu in 8 years. If you keep listening to the glutenoids who tell you you are defective, and who tell you that you need a drug so that you can eat wheat, you will become a victim of the corrupt FDA and drug industry, and the gluten dairy and sugar addicted society that tells you that you need to live like they do.
Actually, I don’t think it’s overboard at all. I have extreme anxiety about contamination and I would feel much more empowered and able to live a more functional life with at least some form of insurance that I am not being contaminated. Because avoiding contamination can be much harder for some people than it is for others, and it’s very difficult to avoid for me (full-time college student with two part-time jobs that only add up to 21 hours of minimum wage pay per week, no license or access to a car, and no way to be sure that even my own home is free of contaminants). I think it’s an excellent idea. And I also disagree with your condemnation of the words “disability” and “victim.” We are, in a sense, the victims of a society that excludes us from many opportunities because we aren’t given the options we need and deserve. This situation is in fact disabling. Celiac itself is also disabling by the definition of the word. We are physically and often mentally impaired by the disease. I don’t think that’s anything to be ashamed of either. I don’t sit around and mope about being disabled or a victim, and I don’t look down on victims and disabled people in general, as you seem to do. I can be those things and also be a strong person who fights for the same consideration afforded to everyone else.
Of course we are all victims! I just got out of highschool, got a job and was living fine and then I got sick and all the doctors thought I was faking it even when I would be in the ER every other week puking and going into shock. I then had to quit my job because I sat in bed for 4 hours every morning in severe pain, I would go a few days only drinking the smallest amounts of water only to find out I had celiac disease and then folic acid deficiency and I still can’t get a job or pay the rediculous prices for gluten free food let alone my hospital bills and the government won’t help me and I am barely surviving right now living off of rice cakes. How am I not a victim?
The word “disability” is a legally defined term under the Americans with Disabilities Act. In a settlement with Lesley University in 2012, the U.S. Justice Department indicated that celiac disease may be considered a disability under the ADA and therefore eligible for public accommodation.
This means that students with celiac disease have a legal basis for requesting accommodation at schools and universities, and may have further implications down the road for accommodation in other settings. Having celiac disease defined as a “disability” can be tremendously positive and life changing for those who need the accommodation to live and thrive. Our foundation has an article with more information: http://www.celiaccommunity.org/advocacy/lesley-university/
As an aside, this accommodation often requires a documented medical diagnosis of celiac disease. So parents should think ahead before putting their child on a gluten-free diet without proper testing for celiac disease.
I agree it’s not healthy for a person with celiac disease to think of themselves as a victim. It’s great to have the key to one’s health, and the fact that it is a dietary exclusion, instead of pharmaceuticals and surgery, is wonderful.
Thank you for your work and advocacy.
I decided some time ago that I would not let it get the best of me. Life is too short to go around felling sorry for myself. I do twbest I can. I have a dog and I’m pretty sure he can’t sniff out gluten
He does sniff other things though.
The world is full of wild and unusual things, and that dog is one of them. I would love to see him in action, and then teach him to sniff out all the places that serve GF Beer. 🙂
Honestly, I’m having a hard time buying a dog’s ability to detect “gluten in a bug spray”. The gluten protein would be hydrolyzed and broken down to such minute fragments mixed with all those chemicals, that it would be hard to imagine even the best dog’s nose detecting that.
Imagine walking through the grocery store? his head would be swiveling left and right, poor thing.
I have to check this story out further.
A dog can smell 1 table spoon of shugar in 1 body of water the size of 2 olympic size swimming pool’s. In celiac term that works out to .005 parts per million or 5 parts per billion.
and??
And what??? She’s better than any machine invented! By the way She loves the grocery store. She gets her ball after, and in her mind that is a pot of gold.
And we wonder why people won’t take us seriously when we go out to restaurants. This is the kind of thing that makes us a laughing stock and the brunt of jokes on Jimmy Fallon. I don’t mean to be indelicate, but what will she do when her dog goes to doggy heaven? Train another dog? We need to be our own advocates without bringing animals into restaurants and grocery stores. Seeing eye dogs I understand, but this is silly.
Yes, while it is true that for someone who has a gluten issue that causes discomfort/minor sickness to train their dog to sniff out gluten is a little bit out there, this sort of thing has its place in the world. In my case, I am seriously considering getting an Allergen Detection Dog, because I have life-threatening/anaphylactic reactions to eggs and tree nuts, and being 14 I’m going to be on my more and won’t have my mom to obsessively ask about everything. I have had serious panic attacks (to the point I’ve had to be hospitalized) because of allergies/not trusting restaurants that have clearly said they don’t have nuts on their menu when in big, bright letters it clearly says “WALNUTS!”.
Celiac is not an allergy, though.
Anaphylaxis from allergies is an entirely different clinical entity.
There are dogs being trained for use with people who go into anaphylaxis, Maybe you should look into that.
That’s what I have been looking into, because it’s nerve racking and to had that sort of comfort and not having to worry about cross contamination. Being a gifted individual, and knowing in detail how this works making it all the more terrifying.
Oh no you didn’t! Not going to let you get away with calling gluten induced autoimmunity that can literally kill you 800 different ways a minor disease.
Michael…try to take it easy a bit please. Take a breather and come on back.
You are off the mark on this one, Gluten dude. I am actually very upset about your post. I strongly disagree about your feelings on the gluten-sniffing dog and don’t think it has anything to do with accepting oneself as a victim. I agree that the cracker incident (her failing to buy the GF ones) was a silly example of the use of the dog. But I think you are disregarding the very real issue of unavoidable cross contamination. First, let me introduce myself. I am an extremely careful celiac, who has been GF for almost 2 years and am still very sick. I am also a research scientist, and someone whose celiac aunt is dying from bowel cancer. Let’s consider that it takes, what does the research say?, 3 months or 6 months for the villi to be repaired after being glutened. And it says that even those who aren’t “sensitive” are damaged even though they are not aware. And the research says that when the intestines are in that state you are at high risk of bowel cancer and other serious related illnesses. So even if you are glutened only a couple times a year, you are in a constant state of damage and at high risk for cancer. Now let’s talk about cross-contamination. After reading the gluten-free watchdog website’s info on how company’s testing of ppm levels of gluten is performed (and reading the member-only findings of their investigations) and watching the NFCA’s archived webinars on the FDA gluten-free labeling law, I think it is unavoidable to be glutened at least a few times per year, even if you only consume food you make at home from scratch. Even CERTIFIED gluten-free flour/bread/cracker/cereal companies occasionally have batches with significant levels of gluten that make it to the shelves. When it comes to non-grain foods, even when you are not buying processed foods, but canned tomatoes, spices, etc, there is still a significant risk of getting glutened once in a while. To minimize this risk, I try to only buy products that are not made on equipment that processes gluten, but they are often hard to find. I have called hundreds of companies in the last two years, and most of them do not have dedicated gluten-free lines. Many of them label a product gluten free (because it’s legally allowed since it should naturally be GF) even it is made on gluten-containing equipment and not tested for gluten. Sometimes they do not even clean the equipment in between batches, yet assume it’s gluten free and label it such! And the statement sometimes found on the label “made on equipment with wheat” is a voluntary thing; just because your can says nothing about equipment with wheat, it does not mean that it wasn’t. Also, spice companies must purchase tropical spices from abroad, and there are known cases of them being sold spices cut (diluted) with wheat flour, which those reputable spice companies unwittingly sold as gluten free (because naturally those spices should be gluten free) (see gluten-free watchdog website). Additionally, gluten testing is not as accurate as we would like and many companies that do test for gluten do not test every batch. There is still not a reliable testing method established for fermented products, spices and chocolate (see NFCA’s webinar on alcoholic beverages and Gluten-Free Watchdog). Okay, so in summary, almost all of us celiacs run the risk of getting glutened at least a couple times a year (even if we are unaware of being glutened) and that risk puts us in a nearly constant state of low-level damage, heightening the risk of cancer. (And biopsy studies do show that few celiacs ever completely heal, even when diet compliant). If I could afford a gluten-sniffing dog (it costs $7000 for an accurate one http://www.columbiamissourian.com/a/176238/we-cant-smell-it-but-he-can-dogs-special-training-protects-owner-from-gluten/), I would get one. Perhaps he could help me find the hidden sources that are keeping me from getting well these last 2 years. And then after that, maybe he could help me to actually be able to eat in a restaurant or go on a vacation. The dog may make you feel like a victim, but to me it sounds like freedom.
I completely agree with you on this, as I have stated in my preceding comment. It is a serious benefit to have a for. Of avoid what courses us to be out of commission for a long period of time/possibly killing us.
Jeanne, thank you for writing this. my feelings exactly. you just said it much better than my more emotional approach above. Just because we are aware that nearly everything is susceptible to cross contamination doesn’t mean we have to live in fear or feel like the victim.
I truly do not understand why Dude things the idea of a gluten sniffing dog is absurd, or a dog sniffing food in a restaurant is absurd. Unusual? sure. but freeing/liberating, absolutely.
It is why i sincerely hope that the pharmaceutical research on medicines that will protect against inadvertent cross contamination come to fruition.
and more the point, it seems like many commenters think that the only reaction to gluten is the outward symptom, when as you say the really damaging part is the long term intestinal damage that takes a long time to heal even from trace amounts.
If a dog, mouse or hippopotamus can help with that, then fantastic.
I especially don’t get Dude’s take on this as he constantly says don’t live in fear. And i agree. Well, this dog, if it can truly work, is an aide to not living in fear.
Hi Jeanne, you may be interested in my reply to Deb @3:19. That ‘gluten free’ doesn’t mean ‘no gluten’ and that some manufacturers do a lousy job is a hard and scary thing to think about. A couple of years ago I asked Professor Peter Green of Columbia U. about those patients that were ‘refractory’ as they like to say. He said 1/3 of his patients on the GF diet still got worse, 1/3 stayed the same, and 1/3 ‘got better.’ I ask you, WTF is going on? For me, GF is mostly something raw and fresh.
Follow the “Fasano diet” for 6 months.Known as the Gluten Contamination Elimination Diet
It is prescribed for celiacs who are possible “refractory” patients.
It has a huge success rate and people can add in some GF products after if they choose.
Grains allowed: Plain, unflavored brown or white rice
Grains NOT allowed: millet, sorghum, buckwheat and others
Fruits and vegetables allowed: All FRESH fruits and veggies
Fruits and vegetables NOT allowed: frozen, canned or dried
Proteins allowed: Fresh meat, fish and eggs, dried beans and unseasoned nuts in shell
Proteins not allowed: Lunch meats, ham, bacon and other processed, self basted or cured meats
Dairy allowed: butter, unflavored yogurt and milk, aged cheeses
Dairy NOT allowed: seasoned or flavored dairy products and processed cheese
Condiments allowed: Oils, vinegar, honey and salt
Condiments NOT allowed: flavored and malt vinegars
Beverages allowed: 100% fruit/vegetable juice, gluten free supplemental formulas like Ensure, Gatorade, milk and water
*Please consult with your doctor before going on this diet
**Courtesy: Research: ”Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients” BMC Gastroenterology, February 28 2013
Thanks very much for this specific post, Irish Heart. I’m ever too lazy to find that study for myself. As I read it, those people did much better on this more restrictive diet. But as I read it, there’s still sources of gluten, like cross-contaminations in the rice and beans. I think one of the grave issues in treating Celiacs is that food restrictions mean social restriction and rage and panic. But what Fasano’s group did show is that the normal GF diet may not be good enough for some Celiacs. You won’t see me eating canned or dried veg, or dairy(mostly). And that beverage list is plain crazy talk to me. Thanks again for the citation.
“But as I read it, there’s still sources of gluten, like cross-contaminations in the rice and beans. I think one of the grave issues in treating Celiacs is that food restrictions mean social restriction and rage and panic. But what Fasano’s group did show is that the normal GF diet may not be good enough for some Celiacs”
a few thoughts:
There are many rices on the market that are safe. Lundberg, for example.
I am not socially restricted and I don’t live in rage and panic, hon.
It’s not about “good enough”…if you read the study, you’ll find that after 6 months, those people went back to a “normal GF diet” with no ramifications.! It meant those people needed an elimination diet to help heal the gut. And then, they were fine.
It’s about gut healing. time, patience, probiotics….did I mention patience? 🙂
I agree it is about healing the gut. That diet allows stuff I cannot have, like eggs and milk. I swell up in the joints on milk, but have no problem with hard cheeses, and I react to eggs like I do when I get glutened. But I get the idea behind the diet, and I really appreciate all the research links you have been giving, IH. I only rage at my doctor when she says I cheat.
Did everyone get better on this diet? My recollection is that not all did. And why does it take so long to get better anyway? As far as Lundberg rice, my mother can eat it, but I can only eat a little, lest I get my reactions. We’ve only tried the brown long grain.
I’d like to see what happens if a really tight diet is tried out. Like without those processed liquids or those beans. These researchers may not have gone far enough, if you ask me. But then, la di da.
I’ll have to check out this diet. It is pretty close to what I did. Just an FYI….I followed a pretty strict diet and did not go out to eat nor purchase GF products. My 6 month check-up was amazing. So much so that the doc wanted another biopsy to make sure the bloodwork results looked the same inside. He and staff were amazed. Me too, my results showed significant healing. Not bad for a late diagnosis at 50. I was worried because my original lympochytes were high and 6 months results showed no signs of epithelial dysplasia. However, I then felt free to introduce the GF products and extend my reach to reflect inclusivity again in the human world of eating. BAD IDEA! I am now regrouping and going back to my original plan after three months of off and on misery. Jeanne makes a good point regarding GF products and I can speak from experience. Not all GF items represent the true meaning of Gluten-free. I am more alert to the healing process, lag time in recovery from gluten episodes, and the exceptions to the rule. Nevertheless, onward and upward!
I believe the isolation and stigma – which we are seeing in this post from our own people – is actually part of what makes this a disability. requiring legal protection.
On social scientist said that not eating the sames foods – the hunting/gathering signal of ingroup status – is the emotional equivalent of being left out on the ice to die. I have certainly felt that way at the companies that pamper employees with free food all the time and expect those who can’t eat their food to sit in on the endless dinner party in misery.
//…and expect those who can’t eat their food to sit in on the endless dinner party in misery.//
No, it’s even worse: they expect you to sit there and enjoy it. It escapes that mentality that you might find it misery.
“On social scientist said that not eating the sames foods – the hunting/gathering signal of ingroup status – is the emotional equivalent of being left out on the ice to die. I have certainly felt that way at the companies that pamper employees with free food all the time and expect those who can’t eat their food to sit in on the endless dinner party in misery.”
Left out on the ice to die? seriosuly??
I have to say: I am aghast at this hyperbole.
Bravo Jeanne! Absolutely agree with you.
I just got back from an Alaskan Cruise with Princess Cruise Lines. These people got it! Nobody looked at me like I had a third eye or something. I got to order ahead so my meal would be prepared properly for me. I even got awesome desserts and gf bread or muffins when I asked. There was a great breakfast/lunch place in Anchorage that marked their menu with the gf choices. No food problems at all and I didn’t need a dog.
Awesome! Sounds like a fabulous vacation. 🙂
I do know a few Celiacs that have other symptoms from gluten that are drastic enough that I can see having a dog, if the dog helps. Since they now have dogs that sniff out everything from bomb making materials to bedbugs, why not gluten?
One Celiac I know has an additional complication of gluten zapping her equilibrium, making her dizzy when she gets gluten and she can’t drive. It lasts for weeks.
Another Celiac I know has projectile vomiting.
I thought I only had the normal Celiac reactions but not long ago, I got a GF pizza with sausage on it that was made with beer (normal beer). I’m lucky we got the pizza to go because I threw up so much that I passed out. That’s atypical for me but if that was the normal gluten reaction, I could see a dog.
It’s a pity I can’t train my cat but first, she would have to care. 🙂
Yeah, the cats are like, “ha ha!! Now you know what I go through with those stupid hairballs!!
Now that you mention it, she probably thinks I have hairballs.
Gluten sniffing dog? I don’t even know where to start with that one.. But hey If I thought I could teach our pooch, Lady, to sniff out gluten. I might consider trying it lol just because it would totally cool!.
I agree with you Dude and most of the others.. Yes, Celiac Disease really sucks and it does make life very challenging at times . In the beginning it is overwhelming. Until you learn how to stay safe , you become a little paranoid of everything that goes into your mouth. Once you learn to manage this disease and you begin to have good days again. It gest easier.It does take time, but you can learn to live a full life again. How is this a disability? I don’t see Celiac disease that way.. but I guess I can see how it could be depending on the amount of damage done and how sick a person is before diagnosis. In the beginning, I am not sure I could have held down a full time job outside of my home because I had a lot of really terrible days and I didn’t have a full handle on cross contamination, or hidden glutens. I was really sick a lot of the time for the first 6 months after finding out I had CD. But was I disabled? Did I have days that I barely made it through the day? Yes. Did I have days where I was in the bathroom throwing up and wanted to lay in bed all day. You betcha! . Did I spend a lot of my weekends in bed or lounging around when my husband was off work to re-coop..YES!!!! But was I disabled..No, I was not! Even with being that sick, I still managed to take care of our 8 kids some of whom were toddlers, do the household chores, cook meals, do the grocery shopping for a family of 10 , run errands and homeschool.- Being a sahm Mom of 8 kids is a full time job let me tell ya!! You don’t get many sick days or days off no matter how you feel. If I was disabled I would not have been able to care for my family. I know a lot us might not be able to pass all the physical exams for certain jobs like the military or work long physically strenuous hours or be able to work in a commercial kitchen. But does that make us disabled? I don’t think so. To me disabled means you have a condition that prevents you from working a job .. any job because you are not physically or mentally capable. Celiacs do not fall into that category. We can still work.. maybe not every job out there but there are plenty of jobs we can do..
It seems like one of the issues here is how we define disability. In Disability Studies, one of the frameworks that we use is a definition of disability that doesn’t look at what is “wrong” with the person, but rather looks at how environments, society, and other institutional structures selectively disable certain people because of the expectations of normal engagement that are established by societal structures. Our world is set up for people without food intolerances, which disables many people with a variety of allergies and diseases. People are expected to engage with food in ways that are not safe for people with allergies, celiac, and other conditions, which does impose a certain burden on those people. As such burdens go, perhaps people with celiac bear a comparatively light one; however, it is still worth asking why our society is set up in such a way that normal engagement with the world requires a certain kind of body, immune system, etc., one that many people don’t have.
There’s also the issue of celiac symptoms, and how physical, social, and institutional structures selectively disable people who are dealing with the variety of symptoms celiac can produce, even for those who are very careful and only occasionally and accidentally consume gluten. I feel more fortunate than many people because I use a cane only rarely, but when I do, I become very aware of how the environments through which I move disable me by requiring me to do things like climb stairs, stand for extensive periods of time, walk on slippery or uneven surfaces, etc.
Too often disability is framed as weakness or as a problem with the body of the person who is disabled, and people reject being associated with these “negative” attributes. However, when we reframe the issue, it becomes clear that temporarily able-bodied people are benefiting from institutional and societal structures that selectively privilege them, until such time as their body changes. It’s really in everyone’s interest to focus on how environments and institutions produce disability through their expectations of normative engagement than to worry about who is a disabled person and who is not. Those of us who are temporarily able-bodied could face the same problems as those of us who are selectively disabled at any point.
Very well said.
I can see it as a variable. In my normal environment, say my own kitchen or at my desk at the office where I keep GF options on hand, I’m not disabled. On Jury Duty or some business event with box lunches from the local deli, if calling it a disability is what it takes to not be treated like cattle and get something to eat that won’t make me sick, then yes.
But if I had a reaction to gluten like someone with gluten ataxia or one of the other extreme reactions – that is a disability and I can see extreme measures like a service dog to assist. Basically, it’s not my call.
very well said.
AMEN!
Agreed on most counts. We are not victims. But as someone who works on a college campus, I think a student with celiac who is required to live on campus has a right to eat celiac safe gluten free food. If this option is not protected under the Americas With Disabilty (as a celaic student would not be able to function under conditions where they are forced to consume contaminated food) does this mean a student should not have the right to be accommodated? Just asking the question to our community. Would love to hear your opinion and others on this.
I agree do agree to a point that students have the right to safe food. But I don’t understand how anyone is forced to live on campus? There are other options like sharing an apartment close to campus with a few roommates or choosing a college where they can still live at home with their parents. Or if none of that is a possibility … Most colleges allow refrigerators, microwaves and electric kettles to boil water in the dorms.. with these three things a person could still eat pretty well with a little ingenuity . Even if there were no safe options in the cafeteria.. I think a person could still manage to be safe by eating in the dorm.
I meant to say by preparing their own food in the dorm..
Many schools force you to live on campus for one or more years and force you to buy a mandatory meal program. Particularly where there are not accommodating stores within walking distance of campus, this opens universities to obligations/litigation under the ADA.
I worked on a campus like this, and I was really sad for the students who were too sick to learn and didn’t know how best to ask for help.
I still don’t see how a student is forced to do this..They still have a choice of whether to attend such a college or not. If you have celiac disease and the college of your choice forces students to live on campus and purchase a meal plan but they cannot supply you with safe gluten free options then this college is not the place for you. It’s that simple. To me the choice is clear. Choose a college who can accommodate your needs or find one that allows you to live off campus in an apartment where you can prepare your own food. Or if you have to go that one college and there are absolutely no other options and I find that hard to believe because there are always other options.. then bite the bullet , buy the meal plan but don’t use it and source all your food on your own- like having a mini-fridge, microwave in your dorm. Knowingly putting oneself in harm’s way because those are the rules of a college at the expense of your health is foolish. Not being able to attend the college of your dreams may be disappointing but it’s not the end of the world. If plan A fails then you move on to plan B and so on until you find the plan that you can work with. Is it fair ? No, but life is not fair and you don’t always get everything you want. Sometimes you have to do what you can do and not always exactly what you want to do.
‘Stop Prescribing Me, Please: Perceptions of Gluten-Intolerance’
http://mharmannsf.tumblr.com/post/97238385789/stop-prescribing-me-please-perceptions-of
Boom.
I’m not sure if we are thinking of the same woman, but I believe the article stated that the damage from CD and the consumption of gluten all of her life was so debilitating that her doctors told her that she would seriously become ill. I want to say that they said she could potentially die if she ever consumed gluten again. Through this journey (my son was diagnosed February and I last month), everyone with CD, gluten allergy or gluten intolerance has different symptoms and reactions. We should keep an open mind as to why this woman needs the dog to sniff out gluten. I think we can all agree that we have been glutened at one point or another. We learn from the experience and move on. We were so happy this summer when we found Red Robin. My son had not been to a restaurant since February. And to a 9 year old that means something. Well, after 4 or 5 visits, to 2 different locations (same manager, he had transferred closer to us coincidentally), the manager was transferred once again to open a new location. On our next visit, the waitress seemed so uninterested with our situation, a few mistakes had been made that we had them correct. When my husband spoke to the manager on duty, he just gave us the blah, blah corporate answer. We have not been back since and that was 4 weeks ago. We’ll probably go back, but not any time soon.
Dude, how much Tito’s in the recipe & do I start with the Tito’s or combine with the other “splash” & is it shaken or stirred – on the rocks ?!? – Dude, you got to be more specific now that you’ve published your 2nd recipe in a month:
“And the recipe is pretty simple: a dash of common sense, a splash of diligence, a pinch of self-control and a dollop of acceptance”
Additionally, my 14+ yr old Lab, Bo, volunteers for Gluten Sniffer, but his percentage fee includes at least 2 bites of each sniffed food item. After 2 yrs with me he’s attained Master Class status.
Hope Mrs Dude is doing well and the Collegiate Dudette is happy & making full use of her tuition payments!!
I am shocked that there are people here who think bringing a dog into a restaurant to “sniff” out their food to check for gluten is acceptable behavior. What ever happened to common sense. I have been going to restaurants and eating gluten free since 2008. All I have to do is stay in good communication with the chef and staff and I am safe. I personally would be humiliated beyond belief to walk into a restaurant with my “gluten sniffing dog”, order a dinner and then have my dog sniff it to see if it’s okay for me to eat. So the dog alerts you that there is gluten in your food. You’re going to say to your waiter, excuse me, my dog is telling me that this is not safe for me to eat, please take it back. Seriously? This is beyond ridiculous. If I get glutened (by accident of course) on occasion, I will not die. I may get very sick, but I will not die. If I did this I would fully expect the restaurant to laugh me out of their place of business.
EXACTLY!!
Oh thank you for that visual, CD. Way too funny….
I would have agreed until this last time I got glutened and got so sick. I’d be willing to deal with a service dog to avoid yakking my guts out. Thankfully, in 11 years of being GF, I haven’t had that experience before.
Sadly, common sense is dead.
Common sense is not so common. The bottom line for me is, these are ridiculously extreme measures (just my opinion). I’ve been to restaurants and have gotten a little sick from gluten either from miscommunication or cross-contamination before like everyone else, but I recovered and am here to fight another gluten free day. But, taking a dog into a restaurant to sniff out food is just embarrassing and unnecessary, not to mention off-putting to all of the other people dining at the restaurant.
If your reaction to gluten is the common Celiac special of essentially stomach flu and brain fog for a few weeks, it sucks and you can usually use common sense to avoid it. However, if someone else has a more extreme reaction, they need to do whatever they need to do to stay safe. It’s not about you, it’s about them.
If it makes you feel more empowered to say you’re not disabled, fine (**wave of the magic wand**) you’re not disabled. That doesn’t mean someone else with Celiac might not be.
I don’t get “a little sick” from gluten. I get “a LOT sick”. For days. The pain is excruciating. And I will do ANYTHING I have to do to avoid that. I prefer just to not go to a restaurant rather than bring in a dog, but that is me. I am fine with not eating out. I like to eat all organic and non GMO, and it is very hard to find a restaurant that serves that kind of food that doesn’t charge an arm and a leg for it. My question is, why do people here get so, seemingly, “offended” that some with Celiac have to be more careful than others? People bring dogs into restaurants for all kinds of disabilities now, why not to sniff gluten? Maybe it could help to make non Celiac sufferers see that, yes, it really IS a serious disease and not just some fad diet. Who knows? My husband nearly glutened me last night by passing his breaded pork chop over my plate on the way to his. If I hadn’t seen it, I would have eaten it. He didn’t even think twice. Do you think someone in a restaurant is going to be more aware of what gluten can do to me than my own husband? He wasn’t thinking, that’s all. He apologized profusely. But I would be willing to bet it will happen again, because humans are, well, human. You know, you can communicate all you want but, sometimes, people aren’t really listening.
Just want to point out that not everyone has the exact same reactions to gluten, and so what might be an acceptable level of glutening to one person might cause totally unacceptable symptoms in another. Some people need a companion trained assistance dog just to feel safe going out of their house. Are they being ridiculous? Why this seeming judgement of fellow Celiac sufferers? Your Celiac is not my Celiac is not his Celiac. We are all different. And that should be OK.
I hear what you are saying Deb. But someone needing a dog to accompany them to leave their house do to anxiety issues vs. someone wanting a dog to sniff for gluten at a restaurant are two totally different issues in my opinion. I am an extremely sensitive Celiac as are many with Celiac disease. But we are humans and open communication with restaurants is just common sense. Tell the chef in advance what your needs are, talk to your waiter about cross-contamination. These are more than acceptable ways of communicating your gluten free needs, and yes, restaurants can keep you safe.
Different, but maybe not so much. Gluten ingestion “can” cause severe panic attacks. My point was that some people need more extreme precautions in order to feel safe than others. Why judge? Look, I get it. But I also have been glutened at restaurants who promised me they knew about serving gluten free food. Recently, I was told “any of the dishes can be grilled instead of deep fried”. When I asked if the grill was used for items that had breading on them, I was told, “yes”. I tried to explain that could make me sick, but it went right in one ear and out the other. We can tell people things all we want, but they aren’t always really ” hearing” us. Personally, I would not eat out before I had a dog smell my food, but that’s me. I say whatever makes someone feel safe in this journey is what they gotta do. At least the girl takes her disease seriously and doesn’t cheat.
Deb, you’re right. Much judging going on but if I were one of the Celiacs that had an issue with bi-polar or seizures, I could see it. Some people with diabetes have service dogs because when their blood sugar levels drop out, they need help. I can see getting hit with a gluten fog in the same light. As with other things, if you don’t want a service dog, don’t get one but if you have a kid with extreme gluten or other reactions and the choice is a service dog or home schooling, maybe it makes sense.
Preach, GD. PREACH. I’m with you. Am I tired of taking GF crackers and peanut butter with me where ever I go? Does it irritate me beyond belief that I have to plan ahead and bring them *to a teaching hospital* when I have to take Mother there? Because otherwise there is next-to-nothing I can eat? DAMN STRAIGHT. But I’ve learned. And my numbers have been in the normal range since six months after I got diagnosed. Because I do not cheat. And I trust very few people.
That said…I can HIGHLY recommend to fabulous restaurants in DC. Boss Shepherds and Le Diplomat. Ate at both over the weekend…and life was good. 😉
From the article “By then, doctors told her if they didn’t get the disease under control, she had just three to five years to live.”
When I was first diagnosed, I was so anemic I was having heart palpitations and the ER doc told me he thought I had colon cancer but once I went GF, I healed up. My mom’s friend didn’t. She’s in her 60s, has spent most of her life trying to figure out what was wrong and in the 3 years we’ve known her, has been in the hospital twice from gluten hits… and she’s careful. I belong to a Celiac Support Group and there are quite a few people with similar histories.
If you heal up after a gluten hit, good for you. It might be good to realize that some people are not as lucky and not be so judgmental about the degree of caution they choose.
Maybe it’s the image of the vinyl that put a song in my head but this post makes me want to sing like a lumberjack:
I’m a Celiac and I’m okay
I get brain fog but I work all day.
She’s a celiac and she’s okay
She gets brain fog but she works all day.
I pack my snacks, I eat my lunch
I rush to the lavat’ry.
On Wednesdays I go shopping
And all my food’s g-free.
I read my labels, I research too;
Make sandwiches on Schär.
I’ll never order fast food
Or eat at buffet bars.
I read my labels, I wear high heels
My immune system is screwed
But I won’t be a victim
Just like the Gluten Dude.
[And you thought I was so NORMAL!]
I laugh every chance I can about Celiac Disease. I work really hard to make managing it look easy; gave up crying and pouting about it after the first Thanksgiving. What’s the use of complaining?
Except on this blog. I feel like I could gnash my teeth safely here.
My husband recently reminded one of my friends that people can die, DIE, from the effects of this disease. Maybe it was a compliment, but I also took it as a warning when she said to me, “I guess you just make it look like it is a choice; like it is easy, so that we kinda forget how serious it can be.”
Well, I don’t want thaaaat. I don’t want to minimize the effects of Celiac Disease.
It is a big log to split: How do we avoid becoming victims of this illness without minimizing the massive root system it has?
http://www.bing.com/videos/search?q=I'm+a+lumberjack&FORM=VIRE1#view=detail&mid=69321D7C37A978CF54E969321D7C37A978CF54E9
Thank you for that trip to a happy place. 🙂
A bit of Monty Python makes everything more fun.
Your “I’m a Celiac “song is the favorite thing I’ve read all week! Hilarious! Then I went and watched the video about 5 times, it had been awhile. I might sing your song at the next support group meeting! :-). Thanks for the laugh.
Freeky Girl
I meant to say earlier: I love your song. 🙂
Miss you and hope you are well.
[round of applause]
I love in Canada, and in Canada celiac decease is considered a disability and as such, I get to write gluten free purchases off my taxes.
I’ll take it.
I’m going to take off my celiac hat and put on my massage therapist hat for a minute here. A herniated disc can put pressure on the nerves. Any type of nerve compression can lead to pain, numbness, tingling, or muscle weakness in the area supplied by that nerve.
All that being said, a PT can recommend stretches and exercises to help keep the spine properly supported. A good, experienced (I can’t stress those words enough) MT can release muscles that may be entrapping any nerves, and honestly, I would look into structural integration or somatics to retrain the muscles to move properly. (I need to do that myself.) It won’t be an overnight change, but it seems you are willing to work for it. Even a few sessions with a PT could get you started. I would guess that you probably have some minor postural distortions (lumbar lordosis and forward pelvic tilt are the most likely.)
Ok, switching back to my celiac hat now. Before my Dx, I suffered my whole life with weakness and musculoskeletal instability, and that’s with working out and having a physical job. I was just shy of 26 when I got the Dx last year, so it was a relatively quick recovery for me. I’m glad to be in better shape than I’ve ever been, and I hope you find that too.
Hi Sour Melissa. I am glad your Celiac hat came off for a minute because I have debilitating muscle and tendon pain, and I cannot be touched without severe pain. It feels like it does when someone touches you on a brusied area. I constantly have to stretch to try to relieve pain in my legs and torso, and have been told the tendons in my feet, as well as my Achilles tendon, are too short and that causes me to have my skeleton out of balance, which pinches nerves. Constant numbness, tingling, and pain result. I also have calcium deposits in my tendons and other soft tissue. Can PT and MT help? I also have hyper mobility of joints, real bad in my back, and some PTs have been afraid to work with me. I will scrape the money together if PT and MT could help, but the thought of having someone push on my extremely painful to touch areas makes me question whether I should do it or not.
Deb, could you be deficient in folic acid and B vitamins?
My Celiac diagnosis came about when I had extreme pain and thought I may have fractured a hip. I didn’t have a fracture but I was extremely deficient in iron and later they figured out the cause of the pain was that I was so deficient in folic acid that my nerves couldn’t repair themselves. I wouldn’t expect miracles but it sounds like even a little bit of help would be a good thing. It’s been 11 years and every time I try to back off the folic acid supplements, I have a problem with the sciatic nerve.
Disclaimer: My health care experience is strictly from the consumer side.
Thanks for the suggestion, K2, but no, not deficient anymore. I was really low in B12 and very anemic when diagnosed 14 years ago, but B12 is now up above 800 and iron is really good, too. I have always been VERY high in folic acid for some reason.
Good example of the problem with trying to solve Celiac issues… we’re all different. I have my own set of rehab exercises and yes, it’s like your body remembers those moves hurt really badly at one time and just doesn’t want you to repeat the experience.
This is always why I stress finding a good massage therapist who specializes in injuries and chronic pain. I learned a lot in my first few years about it while I was still struggling with my own. (I couldn’t absorb magnesium, which caused chronic systemic spasms.) Often, a gentler touch is required at first to ease the muscles into being touched and to build trust with a client. You can gradually increase pressure session by session from there. Once you’re able to take more pressure, the real healing can begin through releasing muscles to realign the body properly, and always remember that the problem is not necessarily where the pain is.
As far as PT goes, try to find someone, once again, with a gentler approach to therapy who will push you, but not past your capability.
Not everyone in either field is experienced in working with someone who has been in pain for long periods of time. Look for referrals from friends, especially people with celiac, fibromyalgia, lupus, etc. If a therapist can work well with them, he/she should be able to work with you. I wish you the best of luck!
Thank you sour Melissa. I will look into it. So far the magnesium has been helping some. It’s mainly from my knees down. Mostly my ankles. Really weird. You don’t live in Texas do you?
Unfortunately, I live next door in Louisiana. It’s about 6 hours to the state line.
Thank you for the wealth of info. Is a little far to drive. Lol Ty
Thank you for the advice. I do have scoliosis which makes my back muscle really sore. I think I’m fearful of anyone touching my back in case it starts my disc to hurt. I did not opt for the surgery. That’s one pain I pray I never ever ever have again. I did go to a chiropractor after it herniated but that was not helpful at all. I’m just hoping over time my legs straighten up. If I wasn’t to lazy I could do exercises at home. I think In the back of my mind I’ll hurt my back. Do not want to go there. Thank you very much.
The person that left the comment about the battles that we have to fight for and so so is me and I am posting here to say…yes, celiac disease is a disability. But this is not a matter of being a victim, no.
This is a matter of recognizing that we have a disability and people with disabilities often do not recognize or do not want to recognize that they have a disability, and that they can be taken advantage of and discriminated against. The day we realize where we are is the day we start thinking about other people like us and what can we do as patients with celiac disease to help other people that have our disease. The day we identify as a whole unit is the day our celiac boat sails.
Talking and talking is not going to take us anywhere. We have to act, start doing things for people with celiac disease. It is natural for somebody in state of loss ( in our case loss of health) to go through the many loss stages Dr. Kubler-Ross talks about. This is an autoimmune disease folks, we are going to have our days when we are fine and our days( pneumonia, H1N1, H2N3,
hives, etc.) when we are not feeling well; that is part of what we have. I am acknowledging I am the way I am, and I am going to love myself no matter what.
By the way, we can start another article, maybe a novel, about calling ourselves “celiacs” Are we “celiacs” or “people with celiac disease”? Maybe if we call ourselves “celiacs” are we playing victims? Dr. Peter Green in his book Celiac Disease asks celiac patients not to call themselves “celiacs” because they are not their disease.
Now, I want to start doing for people with celiac disease instead of talking. I want to start several projects, and I would like to share my first one with you. I want to write to legislators in my
state(after the elections because we are wasting time if we do it before) to let them know that insurance companies should pay some kind of subsidy for the gluten-free food to people with celiac disease. For what I understand insurance companies are paying for food for other diseases and not for celiac. I am very worried the high cost of gluten-free food force many people to eat
gluten, resulting in sickness… And it seems I am bringing another topic for you to talk about. What do you think? ( and what can you do, too).
Love, Mari
Mari, you want to start projects for our crowd (I like that, it sounds all trendy ;-), I can suggest one that we do in our Celiac Support Group. If you attend a Celiac Support Group, start taking collections of gluten free food and work with your local food bank so they will maintain the gluten free food in a separate space for the people that need it.
After reading this article (http://www.glutenfreeandmore.com/issues/4_16/special_diet_food_banks-2630-1.html ), our Celiac Support Group began collections in coordination with our local food bank and it has been a very positive experience for our group.
The food bank has more GF people now than in the beginning and they also have kids that have various allergies. It’s something we can do for our own group that really isn’t covered in most places. Just a thought.
Good point. I don’t feel like a victim but I sure know I have an autoimmune disease. Many people with Celiac seem to feel fine as long as they don’t get a lot of gluten, and many doctors tell people that as long as you don’t get gluten you will be totally “normal”. Many can get a little gluten and seem to be okay, while others can’t even eat foods that have 10 ppm of gluten without a symptom, so that doesn’t seem to be the case for all people with the disease. So the community itself seems to be divided. I agree. Saying I have Celiac is much better than saying I am a Celiac. I am a person who happens to have a disease, but that disease is NOT who I am. I would love to see all people with Celiac more united and less divisive. It is the only way progress for all will be achieved.
I don’t know if I’m unimaginative or simply impatient but I would much rather say I’m a Celiac than a person with Celiac.
I’m a Texan, not a person that lives in Texas, I’m a pet owner, not a person that has pets. Celiac has defined many areas of my life but calling myself a Celiac no more defines me than calling myself a wife defines me as June Cleaver.
Maybe being part of a large Celiac support group for 10 years has made this less of an issue to me. It’s not like people with cancer that call themselves survivors because they’re over it. Celiac isn’t something you get over, it’s something you live with. Maybe it’s just me but I’d much rather say I’m a Celiac than to say I have Celiac Disease. Having a Disease sounds like you’re about to break out in purple warts.
Besides, I’ve always wanted to get one of the official Silly Yak shirts…
http://www.cafepress.com/sillyyakwow.81024470
This disease is all about responsibility and accountability – it’s your job and your job alone to determine what is an is not safe for you to ingest. To get a service dog to sniff out your food for you to determine if you can eat it seems a bit like passing the torch of responsibility onto your canine friend – and it seems a little… asinine? Just read labels, ask questions at restaurants, and understand that you’re going to get nailed every now and then – and forgive yourself when that happens!
This disease sucks – it really does. But, it could be so much worse, and I try to frequently remind myself of that and give myself a healthy dose of perspective.
“understand that you’re going to get nailed every now and then”
For some that’s not an option because the results are drastic.
I was very sad to read this. I usually like your blog a lot. As someone who has been discriminated against and had to use my ADA status to maintain a job, our rights are quite valuable to me. When anyone in our status group minimalizes the impact on our lives of being different from how the world is designed to function, it hurts the case for those who are in the process of finding their rightful place in it.
Also, kick ass dog!
Thank you! Yes she is.
RJ, I have to agree with you. Rant against the world that doesn’t understand the complexities of what we deal with, I get that. But ranting against someone that has found a creative way to avoid the serious effects of getting glutened is sad. You can’t simultaneously talk about how serious of a poison gluten is to someone with Celiac and then skewer someone that finds a new way to avoid said poison. Well, I suppose you can but it doesn’t make much sense. And if the Justice Department says Celiac is a disability under the ADA (http://www.ada.gov/q&a_lesley_university.htm ) who am I to differ?
Am I likely to get a gluten dog? No because I can control my everyday environment well enough for my needs and my gluten symptoms in the past have been average. If I were one of those that sustained serious lasting damage from the experience or was sending a kid with extreme sensitivities off to school, I’d be very thankful for one more tool in my toolbox.
Hay Gluten Dude, My husband just found your page and a gluten detecting dog obviously is NOT for you and a lot of others. I do appreciate your thoughts though. And you are right the crackers were a stupid move on my part. The only reason I shared the story is because Willow was only 6 mo old when this occurred and only had been training for 2 mo. It takes a year to train a dog like her. It was her 1st indication outside of training.
I did not start training Willow to find gluten to be disabled but to be enabled. See I was diagnosed with Refractory Celiac. A cross contamination could result in intestinal T cell lymphoma with a life expectancy of 3-6 mo. I also am diagnosed with Lupus, Autoimmune Hepatitis and many others. A contamination activates my other autoimmune requiring steroid treatment and takes up to 10 weeks for me to get back on track
I started Nosey so people can go out to eat without fear. So when kids go to school and parent’s can have an extra level of security.So when the pharmacie sends home med that look different because they changed manufacturers I know they are safe.I started Nosey to help people who want to be helped.
Willow just did a live demonstration with cross contamination. The contamination was done in front of everyone for the na sayers.
I have enjoyed reading the blog and will return again.
Dear Miss Scheu
I read your story on your website and I am happy to see your refractory sprue has resolved. I can relate to all your AI issues and the drastic weight loss and the worry that things may not improve.
My own recovery has been slow, but steady and I continue to rehab my muscles after nearly 4 years.
I watched the video of you and Willow in the store.(great dog, btw!)
After the dog paws the package, you read the label and say “yes, gluten free”. I guess I just don’t understand why you need the dog if you can read the label and ascertain its gluten free status?
Just curious. Not judging.( as some have accused those of us who just don’t see the need for the dog.)
Best wishes to you.
The video was for demonstration purposes only. You try to grab random product’s from a grocery store shelf for a demonstration. Its not that easy. Willows job at this point is to catch contamination I miss. When you own a dog like her you still have to be careful. I do leave the house without her. I take her if I’m going to be eating in an environment I can NOT control. I also use her for fresh produce, How many people are touching the produce in the grocery store after eating at Mc Donals in the car on their way.She fails fresh produce a lot. Dogs can smell well below 1 ppm.( I do not allow her to touch food then put it back, for the persons wondering)
Gluten free dude rely twisted the article for his bashing purposes and I get a service dog is not for everyone. For those who choose to use them they are an amazing tool.
Part of owning a service dog is being respectful to the public at all time’s
I also want to add I can not tolerate gluten below 5ppm, I difficult task to manage and still have a life. I trained Willow so I could live and have a life.
If contaminated above 5 ppm I risk my refractory returning resulting in fatal T cell lymphoma. On top of that a contamination flare’s my 6 other autoimmune diseases. Not a fun ride.
I wish i was as lucky as a lot of other Celiacs,
Diagnoses=Gluten Free= Feeling better than I have ever felt in my life.
I just wasn’t that lucky. Willow is also trained to help me with my other symptoms not just gluten. So lets just say if she ever were to miss, Shes going to be a busy girl… LOl
People shouldn’t judge what they don’t understand and a lot of the facts have been left out of the start of this conversation.
I’m sorry if my Gluten dog offends you! Willow has given me my life back. She’s my Rock Star and my familys 🙂
Dawn, I can definitely see a use for a gluten dog for a person the has extreme gluten reactions, doesn’t heal from exposures or for a kid in school. The fact that Celiac is considered a disability under the ADA should help clear the way.
One question – I’ve read about kids going through food bullying in schools and dogs tend to be protective. How do you think the dog would react to that situation?
It has been proven that service dog’s help improve social sills for Kids with disabilities ex: Autism Service Dog’s. Kids love animals so it should make the bullying less.
Service dogs are highly trained for public access work and temperament tested. Not every dog is suited for service dog work and a lot time and consideration goes into picking, matching, training and placing the right dog for the right situation to prevent such a situation from occurring. If dog were to show signs of aggression after being placed, it would be removed from service for re-evaluation and training.
Service Dogs can not be cross trained as a protection dog..
I hope this helps
Yes, thank you. There’s a mother of twins that comes to our Celiac group and she had to quit work to home school her twins. They don’t just have Celiac, they are also autistic when they get gluten. No gluten, no problem. The kids get gluten and they become non-responsive for 6-8 weeks until the effect leave their system. Talking with her has made me realize what a challenge it must be for parents of young children with gluten issues. I can imagine how much help a service dog would be.
I remember the first year I had to go gluten free and we had a hot dog lunch at work. I baked my own bun, brought my own paper plate and fork, didn’t even use the communal catsup and mustard, I had packets I had washed to use. I still got glutened and to this day the only thing I can think of is that I touched the microwave and the door knob and then used those hands to hold a hot dog. I felt like I had a red laser target on my chest and I was going to get zapped no matter what I did. I heal from the damage and I’ve learned some tricks but I can see the use of a service dog. It’s a good, creative, out-of-the box solution.
I am sorry, but I have read all the various comments and this discussion has gone all over the place and I just have to say something:
It’s highly doubtful you were glutened by a microwave or a doorknob. No more than the people who claim bus poles, envelopes, keyboards, telephones and toilet papers rolls are sources of gluten
The additives and preservatives in a hot dog are more likely to make you sick than either of those scenarios.
Celiacs who share work spaces and homes with gluten eaters touch these items every single day and they are not sick because of “gluten contamination”.
Gluten isn’t like bacteria or germs.
It’s not an invisible film that can be touched and spread like wildfire.
No celiac resource says door knobs and microwave handles are gluten sources. If you see food smeared on something, well, of course you shouldn’t touch it. That’s not a gluten issue; that’s just basic hygiene.
Autism doesn’t come and go. Maybe those children get foggy- brained from gluten, as do so many of us, but clinically- diagnosed autism doesn’t turn off and on like a switch.
It’s these kinds of statements that make newly diagnosed celiacs become total basket cases for no good reason.
I agree. Most likely it was the hotdog that glutened you. Not all hotdogs are gluten free. There are only a few brands that I trust to give to my kids that I know they can eat without getting sick.
Actually, my point about the hot dog was that it could be any number of things that can make someone sick.
It’s not always about big bad gluten lurking everywhere.
I get symptoms similar to a glutening from soy, MSG and food additives. Maybe someone just has the flu.
I don’t understand why people can’t see this simple fact: sometimes, it is something else.
Gluten paranoia runs rampant.
And some of the things I read people saying about gluten and the fear they have of it just boosts the already negative stereotypes the public has about those of us with celiac. I think it’s working against us, frankly.
I understand what you are saying. Like most of us ,I have many many foods that I have to stay away from not just gluten. It’s a long list .. and it is not always gluten that gets me.. Though I have different reactions to soy and legumes or night shades or dairy than I do to gluten. I can usually tell which food ‘got me’ if I get sick. I wasn’t disputing that . I was just pointing out that not all hotdogs are gluten free . It’s possible that particular hotdog had gluten in it or had been cross contaminated in production.
It was a Hebrew National dog, Pamela’s bread mix bun, I made it in a hot dog pan made from folded foil. I have been living with this for 11 years and I have found that yes, I can pick up enough gluten from a surface that I will get sick if I then eat something with my hands. I help people in my office with tech issues and we all eat at our desk. You don’t have to believe me, I have lived it for over a decade. I don’t pick up ketchup, salt or pepper in restaurants for the same reason. Some of us are more sensitive than others. How visible is 20PPM?
Also, the twins I spoke of were diagnosed autistic a year before they were diagnosed Celiac. Why would you have a hard time believing that something that could give an adult brain fog could also affect a small child”s brain? Why would you not believe that a team of docs in a children’s hospital couldn’t recognize both autism and celiac?
Have you ever heard of gluten ataxia? Gluten can attack the brain in many different ways.
As someone else said”Your Celiac is not my Celiac.”
I suffered from gluten ataxia for 3 years before DX, so yes, I have “heard of it.”
I suffer greatly from a small hit of CC, but it does not keep me from living a full life. And I am not going to advocate for paranoia and fear
when living with celiac.
One of the many reasons why there is division in the celiac community is because of people who insist that inanimate objects can gluten people. I find it absurd.
I think I am done being a voice of reason on this blog.
I’ve given it my best for 3 years.
Do whatever works for you to live your life. Read the book REAL LIFE WITH CELIAC DISEASE by Melinda Dennis and Daniel Leffler.
Best wishes to all.
Nooo, Irish Heart! Don’t leave! Your voice is needed and SO appreciated. Take a break, get lots of vitamin N ( we used to call it nature) but please return.
Say hi to the Atlantic for me.
Sue (formerly of the East Coast but scratching through harvest) in Alberta
Pamela’s isn’t a dedicated facility and has been prone to recalls in the past. You might be one of many who need to stay away from gf substitutes not made in dedicated facilities and just eat mostly whole foods. Some of us can’t eat 20ppm. Some can’t eat oats. Eggs give me a “glutened” reaction. The hardest part about being gluten free is nailing down what gave you a reaction. Sometimes, it isn’t the gluten. I, personally, can’t eat most processed foods. But that is my own personal hell. If you still have negative blood work, it probably isn’t gluten that is causing you to get sick.
See, this is exactly the kind of thing what I am talking about.
Pamela’s products are all gluten and wheat free.
http://www.pamelasproducts.com/allergy-information-2/
That’s it for me….I’m going to get some fresh air.
sorry for the typo …should say “that I am talking about”
peace, out.
IH
Wheat free doesn’t mean gluten free and Pamela’s HAS had a recall before. Granted it was a long time ago, but my point was that cross contamination can happen with processed foods and if you are a super sensitive Celiac you may not be able to handle 20 ppm. I was not knocking Pamela’s!
Pamela’s is a wheat and gluten free facility.
I don’t know why that is not getting through.
If you read the info on the website- they use the 10 ppm tests. Lots of companies have recalls. Wonder what the one you are referring to is for? Maybe they missed the nut allergy statement? Missed egg as an ingredient?
Nice job product bashing! You got it on the Internet!
Pamelas makes only gf products. Where are you getting this info from?
http://www.pamelasproducts.com/allergy-information-2/
“All of Pamela’s Products are wheat and gluten-free.”
Wow! Those comments got really long and skinny! Lol
Pamelas had a VOLANTARY recall. Someone reported plastic bits in the mix. Not sure if it was ever proven to be true, but Pamelas decided to recall the mix, just to be safe. That’s what a good company does.
We have a few companies that try hard to give us safe gf products. I hate for Celiacs ( or just people on a Celiac site)to bash them and try to spread false info. No one is forcing anyone to buy these products – so if they don’t work for you for some reason- don’t buy them. For many many Celiacs, Pamelas makes great, helpful products.
YES!!!! YES!!!!
Pamela’s rocks and in 11 years of Celiac, Pamela’s has never made me sick. They are also very responsive when you email them.
POINT WAS … any product can have a recall!!!! And the one I am talking about was in 2001. You can get glutened by almost any processed food!!! Dude bashed Bob’s Red Mill for ONE voluntary recall of ONE batch that was only sold in Canada. Did you get angry at him for posting that? And Bob’s Red Mill tests, too!! Again, my point was that if you are super sensitive (which we all know you may not be but maybe others are) almost any processed product “could” be cross contaminated. Pamela’s uses corn, and there was some research done a while ago that showed “some” corn had 82 ppm gluten in it from cross contamination. Pamela’s is a good company!!! There, I said it. Pamela’s is wonderful!! Eat Pamela’s! Don’t fear Pamela’s!
Actually, to me, your point was to spread mis- information about Pamelas. Not sure why. And, yes we were a bit peeved about the BRM thing. Especially all the parts that were false or misleading ” facts”.
And that is enough of that!
I don’t live in paranoia or fear. I live in a state of observation. I learned that the hard way because 11 years ago there wasn’t much to tell me that my husband could give me a gluten hit by eating raisin bran before giving me a good bye peck. He tracked his breakfast and my tummy for 2 weeks before he showed it to me to prove that yes, it is that sensitive. I didn’t believe it until then. I’d had an anaphylactic reaction to MSG 10 years earlier but, for me, allergies worked on the basis of a little was bad, more was worse, not a little meant OMG.
It’s not paranoid when my favorite fried catfish place only makes me sick when I handle the salt or ketchup. I’ve eaten there for eight years and it took a couple of years to track the correlation. I eat catfish rolled in cornmeal with my hands but so do the patrons that get steak fingers, fried in different grease but breaded with flour.
Believe what you want but slamming people that have, thru trial and error, found the sources of their problems seems unproductive. It’s not reasonable to ignore something that has a statistical history of making you sick.
I don’t quite get the catfish at the restaurant thing….never had a place that makes me cook the food? But anyway. : )
The fact that this person has a problem with a product isn’t really the issue, for me. What bothers me is all the false info about the company she is spreading and trying to scare people away from the products with the incorrect info.
I’ve never had a problem with a Pamela’s product other than the fact that I might as well plaster some of them straight to my hips because that’s where they go to live forever. 🙂
Most people eat fried catfish and fried steak or chicken fingers with their hands. The restaurant is very good about keeping the catfish in separate grease, they will make chicken fingers in cornmeal for me and cook it in the catfish grease to avoid gluten and that place understands gluten issues. But people with greasy hands handle the ketchup and salt when they are eating fried steak fingers and, at the end of the day, the containers on the table are sticky. Again, observation. I’ve been eating there for years. If I don’t touch the sticky containers, I don’t get sick. If I do touch the sticky containers and handle my food, that food is out of my body ASAP. If I touch the sticky, greasy ketchup and eat my food with a fork I don’t get sick (okay I’m in my 50s but finger food is more fun). Get the food to go, no problem. This it the favorite place for my family to celebrate birthdays and we go there when it’s not an occasion. I’ve had many opportunities to test it.
If others don’t have the same experience, fine. But if you keep getting sick and can’t figure out why, start looking for other possibilities, don’t jump at the first conclusion and test your conclusions several times before considering it confirmed. Sometimes, it is the flu or too much hot sauce or whatever. Sometimes, it may be greasy gluttonous fingers handling the ketchup and maybe you are that sensitive.
I thought you were saying you went into the kitchen and rolled he catfish! Lol
LOL!
I used to never understand the people that would go to the restaurants that made you cook your own food at the table. Now, I feel like it would give me more control over my food.
Thanks for reaching out Dawn. This was not a personal attack on you and my apologies it came across that way. My blog has three purposes: to entertain, inform and empower. And I always try to strike that balance.
This blog post was a culmination of people acting paranoid and helpless because of their celiac disease. And frankly I think it’s bad for the community as a whole. We have a disease that sucks. No doubt. But it is manageable. And I need people to see that clearly because once you get sucked into the black hole of fear, it’s hard to get out.
You are doing what you think is best for you to stay healthy. I wish you the best.
Wow, I usually really like and respect you GlutenDude but this post was very disappointing. You left out lots of the benefits of having a gluten dogs do seem to have twisted what Dawn said and only highlighted the points that were negative. While you are harping on about Willow and the bag of wheat crackers, you have missed the benefit she provided and seem to have missed the whole point about how a gluten dog could save you from being severely sick. What happens in a restaurant when your supposed gluten free salad may have had croutons dropped on it and then taken off by a careless waiter who didn’t want to remake the salad? What about when gluten free food is served on gluten containing plates? Or chicken grilled in a gluten grill? I for one, react severely to even the slightest gluten contamination, so this is a big deal for me. I guess to those who don’t react as severely, it would seem like overkill, but for people like Dawn and me, it is definitely not. I am also training a service dog to detect gluten, and she will be a fantastic tool to keep me safe. I suggest you think before you judge next time, and maybe give some needed support instead of saying we are “victims” to our disease.
Your so right Beck, If more celiac had a gluten dog even more would be safe. Non celiacs might take us more seriously, and we would have nothing to complain about. What a concept that would be.
If the service dog’s can help raise awareness for celiac and make life better for all, That’s a good thing
People said the same thing when they started training Diabetic alert dogs.
Wow, this is all crazy! Am I overly cautious you bet. Do I say poor me no, I just say oh well and move on. Some of the things I read above remind me of that tv show Monk.
Agreed. For me, I don’t bewail my fate, I simply say “No way in Hell are you getting me to do something that has consistently made me sick.” Then I go on down the road.
It is manageable, it simply requires observation… and for me, breathing a silent prayer that I’m only managing one immune system disease, not several as some people are.
DON’T MAKE ME STOP THE CAR!!!!! 🙂
Sorry, Dad! But you know I hate when people tell lies or make stuff up. But I am going outside to play now.
Been meaning to mention — this is the only website I know that offers Celiac kumbayas AND math refreshers at the same time! Oh yeah, that’s right… you are a Dad. 🙂
If someone owns a dog and it does what is claimed – that’s fine, let them get on with it. Do all Coeliacs (I’m in the UK) need dogs to support them – no. Is life miserable, all doom and gloom as a Coeliac – no. Am I a victim – no, I’m one of the lucky ones who knows that I have CD (diagnosed 18 months ago) . Is life frustrating at times – yes because despite what patronising people say, there’s not much safe GF food if you’re travelling without a suitcase full of supplies. The big opportunity in this doggy tale is that there’s a potential for a probe or some device that can ‘sniff’ gluten in food. How much would I be willing to pay for this – not sure. But I’d like Google to add developing it to their to-do list.
I am replying to Judy’s post because there actually are gluten detecting items available. Check out gluten tox.com, for one. (I just did a really quick google search.) I know there was an app that was supposed to be out this year – not sure if that’s available yet. Anyways, I’ve been reading this post with interest and my take on it is that it shows that we REALLY need the medical community to catch up with the seriousness of CD and NCGS. Hope that happens soon (maybe 2015!).
The Gluten Tox kits and equipment are certainly promising (and look like something Bart should be interested in), but what would be really great would be something both fast and inexpensive on a per test basis, and that could be used unobtrusively in a restaurant. I think the test system manufacturers will get there eventually.
That would be a dream machine! I can see it working on something like soup but I can’t figure out how it might catch a smear of gravy under the mashed potatoes. But then, I’m not an inventor. Good luck, inventors (and hurry up, would you?).
GlutenDude — I’m disappointed. I think you’ve made this woman, and other people who require these dogs, victims. By empowering themselves and taking responsibility for their own health by getting these trained dogs, they are ensuring that they can live fuller lives without fear of getting sick. All celiac sufferers have different levels of response to gluten, but for everybody it is damaging and unhealthy. But now you have made fun of her, called her a victim, and have everybody who reads your blog making fun of her choice to take charge of her health.
I generally enjoy your blog and what you have to say. From reading your blog and the comments, it is clear that you have a lot of influence and are a trusted source for information. I hate that you chose to diminish the struggles other people have experienced just because of how they choose to protect their health.
Absolutely AGREE with you Molli. I am disappointed in Gluten Dude’s bullying and closed-mindedness.
BULLYING? CLOSED MINDEDNESS?
Have you honestly spent ANY time reading previous posts on this blog site?
Thanks Sue.
Ok folks…I hear you. While I don’t agree that a dog is a necessity, my intention was not to make anybody feel like sh*t and for that I do apologize.
OK, I get that there are varying opinions on a service dog but Gluten Dude is NOT a bully or closed-minded – He spends a lot of time along with Irish Heart, Gemini and several others trying to make sure everyone keeps a healthy perspective in our community regarding CD. They try to keep the most current information about CD out on the internet to offset a ton of inaccurate information out on the internet.
This blog helped me make it through my first year. I laughed through my tears and found the information I needed to make the best decisions for me.
I read the comments I agreed with and the comments that I disagreed with but I enjoyed reading ALL of them and I am grateful for all the people who spend their time sighting sources and putting rumors to bed.
GIVE HIM A BREAK!!!
Much appreciated Camille.
Sue in Alberta!!
Thanks for the warm message. I have a FB page now, so I’ll “see you” from time to time. 😉 (yes, I finally caved) xx
Miss Camille
You’re the mouse that roared, girl.
I heart you .
I read this blog a lot, and find great information and support from it. But I struggled with this post. My kids both have celiac, and both have 504 plans for schools; the only we could do this is because they have a disability as defined by the ADA. The 504 covers everything — food, field trips, what happens if they get suddenly ill, certain accommodations that must be addressed during science experiments and health classes (sometimes they cook). Without the 504, there is no clear and consistent way to communicate with the school staff and others. Given that they cannot control their environment, this is their protection until they can.
That being said, I had a discussion not too long ago with my now 9 year old son. All about school, how lunch time was going, what he did during class parties. He told me that he’s explained to his friends about his allergy. I took the opportunity to explain to him again that what he has is an autoimmune disease, and not an allergy, and that it will be important for him sometimes to understand the difference as he gets older. His response was incredibly telling: “I know it’s not an allergy. I know it’s an autoimmune disease. But I don’t like to think that I have a disease. I don’t want other people to look at me like I have a disease. So I have an allergy, because I just want to be.”
I think if you read the commentary, you will see that everyone with celiac who has posted here (including me) thinks the ADA-backed 504 plan is absolutely warranted.
No one is disputing that at all.
Based on the feedback I’ve gotten, I’ll admit this was not my best work. Its intent got lost in the message and that’s 100% on me.
I think people are confusing the ADA accommodations section and government Disability payments. ADA is why we have 504 plans in public schools. Its why new buildings of certain types have wheelchair accessibility. Its why an employer must consider a deaf applicant for a job they are capable of performing with minor adaptions. This part is usually considered a good thing but can, like any law be taken to extremes.
Government Disability that pays you money from tax payers is different. It isn’t automatic with a doctor’s note. Ideally, you shouldn’t be able to work to qualify for it. It appears to be managed differently in different areas of the country.
And then there are private disability insurance policies……
While I agree that it is over-the-top to bring the dog to the grocery store were every label is available for review, I don’t see anything victimizing about her decision to use a dog to help manage the disease. She isn’t claiming she NEEDS the dog to stay alive and healthy; it’s just another safety net to help her accomplish a normal lifestyle.
If we had a litmus test where we could simply stick a paper in our food/drink and know right away if there was any cross-contamination wouldn’t every one of us use it every time? We are not disabled, we are not controlled by this disease, but we can all appreciate the importance of doing our due diligence. The dog just does it better than we ever could (no matter how much research, preparation, or interrogating we do).
I know a lot of people are questioning the validity of a gluten sniffing dog; but why not? I retired from a career in law enforcement. We trained our dogs to sniff out certain chemicals that go into explosives. We trained our dogs to sniff out dead bodies. We trained our dogs to sniff out marijuana, hash, cocaine, and every other drug out there. The bloodhounds are trained to find people by following a scent trail. Sometimes this trail is days old and the bloodhound superior in olfactory for this. (If you know about scents…they follow the little sheds of skin particles we shed as we walk and move etc…)
So, if I would trust my life that a canine would find a bomb; why would I not trust my life that my canine would find gluten? This is cool! Maybe one more tool to help us stay healthy…Just something to ponder?