First of all, I apologize for being so far behind to everyone who has reached out to me for guidance. My inbox is overflowing and I’m doing my best to keep up. This blog is my labor of love, but sometimes it has to take a back seat to the craziness that is my life.
So bear with me…I promise to respond to each and every one of you as soon as possible.
Today’s Dear Gluten Dude is a subject that I hear about all too often…celiac not getting the respect it deserves.
It is the Rodney Dangerfield of autoimmune diseases.
Please read the following and share your advice.
—————————————————————————————————-
Dear Gluten Dude,
My family thinks I am taking this gluten-free stuff too seriously. My niece even has a friend who is Celiac who gets very sick when she has gluten (I luckily do not – just bloated).
When I told my niece I was advised to throw out all my wood cutting boards she said her other Celiac friend was not as “picky” as me.
That is the first of the many comments I am expecting to get. I know my family. They are going to say I am making a fuss over this.
Any words for them that will still keep me in the family? I have no children so they are it.
—————————————————————————————————-
How sick you get when you get glutened has nothing to do with how “serious” you need to take celiac disease.
Get that through to your family.
Whether you become ill for months (like yours truly) or days is irrelevant. Your body is still being attacked and suffering the consequences.
The choice is simple: Either take it seriously or increase your risk of an early death. And yes…studies have backed this up.
Gluten is poison to us…plain and simple.
There is absolutely no reason for you to “defend” yourself because your stricken with a disease that you did not ask for, that is extremely difficult to live with and that there is no cure for.
So throw the dang wood cutting boards away and if your family loves you, they should not need reasons to “keep you in the family”.
All you can do is ask them to educate themselves. Buy a good book about the seriousness of cross contamination and hopefully they will read it (no guarantees – I had to read aloud bits and pieces to my husband), have them read GD’s blog and others that talk about other autoimmune diseases they have aquired, and be your own advocate and protector. Read The Celiac Disease Foundations Website,The University of Chicago, and Dr. Fassano’s information.
And sometimes it just comes down to taking care of yourself. If they get it they get it. If they don’t they don’t. I have gluten in my house due to my kids and I have to clean after them. They are protective of me, but don’t always realize what they do that could contaminate me. I educate when I catch them from time to time and I am the official dish washer and sandwich maker. I have switched as much as I can to gfree that they can enjoy too, like pasta, chips and sauces/condiments, but they still have breakfast bars, cereal, bread and crackers with gluten in them.
I have family members and friends who still don’t completely get it even after almost 2 years being gluten free. I keep it short and simple now in conversations if it comes up and cook for myself if I go to their homes and I make restaurant decisions or bring my own food.
Remember what it was like when you did not have to worry about food. That is the mind set that most of them are in all the time.
And unfortunately not all with celiac have the correct information about cross contamination I blame this on our medical community’s overall lack of knowledge. Even my gastroenterologist said eating out is easy now….there are menus everywhere. And that is exactly how I got sick again.
Gluten Free is only Gluten Free when you are completely eliminating any gluten – a speck in a cutting board, a crumb from a toaster, a crumb in shared condiments, etc. is Not Gluten Free Those of us who have gotten sick “supposedly eating gluten free” will quickly tell you it only takes a speck and especially if that speck is around people who “Don’t Get It”.
You are not alone. Find others to vent to that are going through it or have gone through it … it will help you to survive the stupidity.
This is the frustrating part, but you must be your own advocate. I have trouble with fellow celiacs telling me “I must be much more sensitive than they are”. Um, no I just react much more strongly. We are all the same amount of sensitive.
Hang in there, and don’t be afraid to speak up for yourself at all times!
Both Alysa and Wendy are SO right. There is no one more interested in or who has a greater stake in your good health than you. Therefore you are the best advocate. Make sure you are well educated. Wendy lists good, reliable sources. Over 50% of the people with Celiac Disease have no outward symptoms. However, ALL people with Celiac Disease suffer damage whenever they eat ANY gluten, whether they mean to or are cross-contaminated by less than a crumb. Too many people believe that if you have mild symptoms that you can cheat a little as long as you don’t feel bad. They are only cheating themselves out of a long and healthy life. Be vigilant and be safe.
I just found out last week that my mother-in-law keeps a slice of bread in her sugar to keep the moisture out. I have been married 28 years! I am either totally oblivious or she started this within the last six years since our family was diagnosed and we don’t really eat there any more. We will be sure not to now!
Anyway, find a support group or just another person with Celiac Disease. It is SO worth it! You no longer feel quite so alone or overwhelmed. And they will hopefully be helpful in finding good local resources. If family can’t get with the program, realized that this is a great opportunity to make some great new friends!
Good luck and hang in there.
It doesn’t matter what her friend says, or her mother’s third cousin’s uncle’s sister in law’s friend says.
This is something diabetics deal with too – “my friend’s mother’s sister’s best friend from high school’s cousin was a diabetic and they can eat pasta at dinner why can’t you?”
My mother taught me the best response to that was “Well, if your friend’s mother’s sister’s best friend from high school’s cousin jumps in a lake, would you too?”
We’re all different. We can take our health seriously while others don’t (even though I have waged a friendly war to get some of them to turn it around….). Throw out the boards. You’ll be a happier person for it.
(and not to mention, the cooking experts advise throwing them out every so many years. Ever seen a bacteria swipe from one of those? Ewwww…..)
Connie said: “My mother taught me the best response to that was “Well, if your friend’s mother’s sister’s best friend from high school’s cousin jumps in a lake, would you too?”
And my Mom used to say “if everybody else was jumping off the Charles River Bridge (we lived in Boston)–would you?” One time I said snarkily Yes! and guess who got to spend the weekend grounded?
To the writer:
You do not need to defend anything you do to manage this disease.
🙂
We do whatever it takes to live a long, healthy and happy life–which requires us to avoid gluten. You need new cutting boards, hon. Anything porous will be a possible gluten contamination issue.
No one in my family questions what needs to be done for me to be safe. None of my friends get upset when I bring them a flexible cutting board (or any number of cooking supplies) for their use when they are willing to cook me dinner. I supervise every step.
They are cool with that —because they took the time to learn about celiac and cross contamination–and because they witnessed what this thing did to me and they would never want to put me in harm’s way.
I honestly do not care what anyone thinks about the way I handle my recovery process. (likewise, I would never question my sister how she handles her diabetes. She does what she needs to do to stay healthy and I respect her choices.)
This is not about what “other celiacs do” — after all, some of them “cheat”, but you’d never see me doing that!
This is about you firmly adopting a rule of self-preservation that says:
I am doing all I can to manage CD and this is “what it is”. I cannot see why anyone would give you any grief over doing what’s necessary to save your own life.
Do not let anyone make you feel “bad” about taking care of yourself!
Best wishes to you.
I am going to say this … coming from someone who is still struggling with family dynamics even having been diagnosed for almost 5 years now … why are you telling your family what you need to do???
I have learned that “my family” is not where I go to seek support for having Celiac Disease or for all that I have to do to live safely with this disease … though you need to stress certain things if you intend to share meals (I have had to put doing this on hold for the moment – until I get my own handle on my health) or if you intend to have them bring food items into your home – my mom yesterday brought over some munchies for coffee and she did only bring items that had gluten free marked on the packages – she knows better to make something for me.
But I have learned that for my actual struggle or processes or how I have to go about making sure I don’t get “cross contaminated” in my own home … I keep it to myself, don’t share it with family ~ and if I need support or advice I go to “straight forward sites” and people I know who also have the disease.
I have dealt with so much “oh I know people who don’t do that” – “oh I know people who can do this” “oh I am an expert because I have read a news story on this and know what you should do” … that it makes me ill – and ha ha I already am.
I would rather communicate with people who understand all the different nuances of this disease, who know that “EVERY SINGLE ONE OF US” has a different story and a different struggle … but that we share on thing in common, we have Celiac Disease and it is a disease that we will constantly have to adjust for “THE REST OF OUR LIVES” …
My advice to the writer is “you don’t need to tell your family all the ins and outs – especially if they don’t support you” ~ doesn’t mean you are less of a family member – I mean really – I am not in my sister’s, cousins, mother’s, ect kitchens I don’t need to know what they do to feed themselves … they do not need to be in my kitchen either …
Get your support where there is true support and stop telling those in your world about every thing you need to do … it’s overwhelming enough at times for ourselves to accept it all … never mind those that don’t understand.
Have you had your MTHFR gene checked? This applies to both the gluten dude and the person who talks about his family not being supportive of his need.
Yes, IM’s got a great point. I think it should be standard practice, after a celiac diagnosis, to check (1) levels of fat soluble vitamins (A, D, etc) and (2) methylation cycle status, either with a methylation pathway panel, checking for SAMe and SAH and homocysteine, and/or genetic test for MTHFR C677T, MTHFR A1298C, CBS, and MTRR. Malabsorption of fat soluble vitamins and b-vitamins are likely with celiac disease.
A year after I went gluten free I was better in some ways (less D) but worse in other ways (more fatigue, brain fog, and disordered mood). Years of b vitamin malabsorption, plus genetic mutations that make me less able to process/utilize vitamins B9 (folate) and B12 (cobalamin), messed up my methylation cycle. The methylation cycle is critical for genetic regulation and neurotransmitter production/breakdown. If it’s not working properly, you could suffer from heart disease, cancer, infertility, mood disorders, and fatigue.
Actually, being diagnosed over 10 yrs now and still having issues, and YES, I’m 100% GF – according to what I put in my mouth knowingly, I feel for anyone who has NO family support. There’s nothing worse than feeling alone when you’re ill. So its disconcerting and very lonely when even the most intimate people surrounding you don’t understand what’s happening with you, and further, make you feel ‘guilty’ about needing to take care of yourself.
Tolerance is part of them taking care of possible cross-contaminates they could be passing along to you. I know for a fact that I get gluten from sources like, the bus pole, or sitting on a seat in a public place, and transferring gluten to clothing for example.
Having to wash my groceries every time I shop, is another. You all go through these things yet often we forget about the most simple ways cross contamination occurs.
So as gluten dude says, no one questions you when you have cancer…so why is this so different?
Sad to say, people can be heartless
” I know for a fact that I get gluten from sources like, the bus pole, or sitting on a seat in a public place, and transferring gluten to clothing for example.Having to wash my groceries every time I shop, is another”
I am sorry, but you are making some incredible statements here
that beg for a response.
Let’s be reasonable here, okay?
To be “glutened” you need to INGEST it. That’s how the immune response in celiac works.
How on earth can you be glutened from a bus pole?
Are you licking it? If so, please stop doing that.
If you mean it gets transferred to your hands somehow, then wash them …and do not put them in your mouth before you do so.
That’s just good hygiene.
Sitting on a seat?
This is the most absurd of all.
Does gluten magically burn through your pants and go into your skin and then, through your butt INTO your digestive tract?
Not possible.
Gluten on clothing? You mean the person next to you has crumbs on him? So, then what? You lick his shirt or pants?
Because that is the only way that cross contamination is going to happen. Just brushing up next to someone does not make a celiac sick. Many celiacs live with gluten eaters and they are fine. (ask the Dude)
Wash your groceries? Like veggies and fruit?
Sure- that is always a good idea for many reasons that have nothing to do with gluten.
Do you mean wash your box of snuggle dryer sheets or the toilet paper?
why?????
Hon, you have what we call “gluten paranoia”. It is not healthy.
You are making yourself unnecessarily anxious and fearful.
I suggest you read Dr. Green’s book Celiac Disease:The Hidden Epidemic so you understand why these situations you cite are not at all hazardous for a celiac.
Be well, be happy and stop stressing about non-issues.
I’m sorry but I have to respond. It’s actually extremely easy to be ‘glutened’ from holding a pole on the bus or accidentally getting gluten on your clothing by sitting on something. I DO practice good hygiene and I’m a little resentful for someone suggesting otherwise.
On the conveyor belt in a grocery store? There’s ALWAYS, some form of flour, pancake mix or bread crumbs from people putting them on it and it’s transferred to my groceries unless I ask that the belt be cleaned first.
There have been MANY cases of people complaining about others eating on busses, subways and public places because it can be dangerous if we accidentally become cross contaminated.
Everyone is different with CD. Anxious and fearful? Oh Yeah! Both my daughter and myself have extreme reactions.
Washing your hands doesn’t free you from ‘flour’ dust in a bakery and hence other possible sources of airborne contaminants.
If I’m being ‘anxious and fearful, it’s because I have a need to be.
.
http://www.celiac.com/blogs/233/Top-10-Tips-For-a-Strict-Gluten-Free-Lifestyle.html
The author of that blog does not cite a single source for any of her statements. Anyone can write a blog article (no offense to my blogging friends, but it’s the truth) but if you make claims such as these, you had better back them up, or they are just speculation.
Here is just one of the myths in that opinion piece:
“Stamps/Envelopes – Stamps and envelopes are another source of gluten-contamination. The glue used in stamps and envelopes often contains gluten ingredients. I learned this the hard way after licking some envelopes and getting very sick. Now I use the no-lick stamps and the no lick envelopes; they are a bit more expensive, but to me it’s very worth it”
This is absolutely FALSE
Here is a reliable source:
“Tonya Muse, senior vice president
of the Envelope Manufacturers Association,
states that adhesives used on
envelopes do not contain gluten.
There are actually only a few
envelope glue manufacturers in the US.
National Starch & Chemical, a New
Jersey company, is one of the largest
adhesive suppliers in the world. A company
spokesperson says it makes its
glue from corn, which is gluten free.
As for postage stamps, the US
Postal Service points out that 98 to 99
percent of the stamps it now sells are
pressure adhesive stamps. You peel
them off a paper backing and press
them onto your mail. No licking required
for anyone, including celiacs. Even if
you happen to get a stamp that needs to
be licked, the adhesive on it is gluten
free, says Roy Betts, a spokesman for
the US Postal Service.”
http://www.glutenfreeliving.com
There are many myths that circulate about “where gluten lurks” and this is one that will not die.
I will have to speak to the administrator of celiac.com about that article because it is full of inaccuracies.
You need to consult more reliable sources, hon. Anyone can have an opinion. Rely on the facts.
Celiac research centers do not list envelopes and stamps as a source of hidden gluten. I have never gotten sick from licking an envelope–and I am about as sensitive as it gets. I’d puke my guts up if that were the case.
Some people often cite other things, like alcohol, coffee, “natural flavors” and vinegar as having gluten. They do NOT, unless it is “malt vinegar” of course.
http://www.glutenfreeliving.com/your-plate.php
Get a copy of Celiac Disease: The Hidden Epidemic and read what the experts have to say.
As usual, IrishHeart, you are the voice of reason in Celiac-land! : )
I think the biggest problem when someone is diagnosed is they fail to learn about how the digestive process works and, without that knowledge, you are not going to understand cc and how it can actually happen. It’s also important not to become too paranoid about it or it will impact your life in other negative ways. But education is key…unless you want to make your life a lot harder than it has to be.
There is no gluten is stamps, you cannot be glutened by a pole unless you lick it, you should not be concerned about others eating on a bus or plane and cc’ing you unless they force feed you gluten….you get the idea. If you lose your common sense, you will not be able to live in the real world with celiac without constantly whining about it. Celiac is not for sissies!
As far as family support, get over it. The vast majority of families do not offer support because they are un-educated about it and they fear anyone who threatens their food. Food is emotional and having someone point out that food can make you that ill is not going to win over their support. I learned the hard way when my family offered nothing to me so I don’t care anymore. I am an adult and just picked up and moved on….as I watch most of them suffer from many of the same symptoms I did. It’s their choice to remain ill and ignorant, not mine. Sometimes things don’t work out the way you want but you have to adapt.
BTW…I was about 1 week away from a feeding tube at time of diagnosis and that’s no exaggeration. I was down to about 95 pounds. My recovery was nothing short of a miracle and 7 years later, I am healthier than I have ever been. And I don’t worry about the conveyor belt at the grocery store because there is no need to….unless someone spills a bag of flour in the line before me.
As IrishHeart says….read the book!
Just a quick point: I got a non-malt vinegar from Trader Joe’s that contained gluten. It was the orange champagne vinegar: champagne vinegar, sugar, orange juice… nothing on the ingredients would seem like it could possibly have gluten in it. I tested it with an at home ELISA testing kit after I kept getting sick from it, and it tested positive.
I also got a jar of pickles once that tested positive on my test strips. That time I didn’t want to risk getting sick, so I tested before I had any. The ingredients were something like cucumbers, vinegar, dill, salt, and sugar. Again, nothing that seemed like it could contain gluten, other than possibly the vinegar.
So even non-malt vinegars can contain gluten.
Ask them to subsitute celiac disease with cancer, diabeates, a nut allergy etc, etc and see if they understand. If you can put it in your mouth, it can make you sick, end, of story!
This blog is read by many people, not all living in the USA. It’s a ‘fact’ that many envelopes are made with some gluten in their glue. It’s also a FACT that many vinegar manufacturers state that their products in some cases are distilled with wheat gluten.
It’s ALSO a fact that some toilet papers and paper towels contain gluten. No, we don’t eat it. However, there’s many paper products that leave ‘dust’ in the air after using them and residue on your body.
Some manufacturers of paper products are now using wheat pulp in their paper in lieu of wood pulp. Another point is that corn used in making glue, is often processed on the same harvesting equipment as wheat and wheat berries have been known to be found in the mix before processing. Although this is minimal, in some Celiac’s it could cause a reaction.
I for one, have become very, very ill in some places due to some of these things…and I know this to be FACT.
The Atomic Mom is correct in saying that if you can put it in your mouth, it can make you sick. I for one don’t walk around with my fingers in my mouth, but if I drag in flour from a grocery store, on my shoes let’s say, (and yes I take them off at the front door) even so much as a couple ‘invisible to the eye particles, then perhaps the cat walks through where I have just been, I can contaminate my house.
Some Celiacs are EXTREMELY gluten sensitive…as in my family. Mom and Dad both had it, as well as my late husband – and my daughter is off the chart with sensitivity along with a several brothers, sisters and cousins, aunts and uncles. Sound unusual? It is. But it’s verified by the gold standard.
Seizures were common as pain and just about every other symptom you can think of related and seemingly unrelated to Celiac Disease.
http://www.badgut.org/information-centre/celiac-disease.html
Before we lecture people on what they don’t know – we should check ALL the facts. And truth is, very, very little is known by many so-called ‘experts’. They also have a tendency to paint everyone with Celiac with the same brush. Not all is known yet about Celiac Disease so buying into what the ‘experts’ have to say isn’t working for me, personally.
I suggest reading this also.
http://celiacdisease.about.com/od/PreventingCrossContamination/f/Less-Than-20-Parts-Per-Million.htm
Oh and just another note – you now need to check with WINE producers to see how they keep their barrel lids from sticking. Many are using flour around the top of the barrel for easier opening. Does this fall into the realm of ‘cross-contamination’?
Maybe two glasses of wine isn’t causing a ‘hangover’ so to speak.
I’m having trouble letting this go. Too many people I know, are getting sick from the ‘things’ that many people say don’t contain gluten or enough gluten to harm them. The following article has many references made by Dr. Alesso Fasano, who I would class as a global authority.
http://celiacdisease.about.com/od/PreventingCrossContamination/f/How-Much-Gluten-Can-Make-Me-Sick.htm
If you are going to quote Dr.Fasano, make sure it is in the proper context. His quotation in this article does not bolster your argument that we need to worry about glue or bus poles or door handles.
He IS a leading authority, I agree.
This article says this:
Dr. Fasano and his colleagues say that many or most people with celiac disease can handle up to 10 milligrams of gluten — the equivalent of 1/8th of a teaspoon of flour, or 1/350th of that slice of bread — in their diets each day without experiencing adverse effects. The study frequently is cited as evidence that celiacs can handle “gluten-free”-labeled foods with up to 20 parts per million of gluten in them.
How does this support your statements? It doesn’t.
I am NOT saying you don’t have to be diligent. Of course we all need to be diligent.
I am saying we don’t need to be paranoid.
Show me one study that says bus poles and public seats are cross contaminated with gluten and pose a health risk for celiacs. I’d be very happy to read it.
.
This is basic….if it’s out there and finds it’s way into your mouth, you can become sick. PERIOD
including one’s foot?
Why would ANYONE do a study on bus poles and seats in public areas to see if they contain gluten? It’s a no-brainer that if someone is eating his sandwich for lunch, that he’ll drop crumbs. This CONTRIBUTES to the possibility of cross-contamination.
MY POINT exactly!!…there is no evidence that bus poles cause a threat to a celiac. How do crumbs stick to a bus pole? more importantly, how do they wind up in YOUR mouth?
Clearly, you have a unique way of viewing the world and despite anything that reasonable people are telling you, you wish to live in fear of things that are nothing to fear. That’s your business.
Best wishes to you.
To the person who asked how to deal with family, I suggest you and your family consult Dr. Green’s book.
Do not rely on people who post inflammatory and unsubstantiated information on the internet. Use your common sense.
I would think if one would watch his videos and read his studies, they’d find out that a person with CD can become ill after repeated use of a product that is certified ‘gluten free’ and that 20 PPTs is an average and is not to say that people can’t become ill after repeated ingestion of much less than that.
He was talking about FOOD when he discusses parts per million, Gluten free FOOD. Not bus poles door handles and toilet paper.
“Many are using flour around the top of the barrel for easier opening. Does this fall into the realm of ‘cross-contamination’?”
Nope it doesn’t.
RE: wine
“All wine barrels use a very small amount of flour and water paste to seal the joint between the barrel heads and the staves. This is the traditional method of making barrels and has been used by all coopers for many years.
This paste is a sealing material placed between two pieces of wood, not an additive to the wine. Almost none of the paste ever touches the wine, so there is essentially ZERO gluten in wine.
Because of this paste, we cannot say that our wine is technically gluten-free, but I would challenge any laboratory to be able to detect any gluten in our wine.
World Cooperage, our barrel partner, has tested a gluten-free paste to seal the barrel head joints. The gluten-free paste would dry and crack, resulting in leaky barrels, which is why they continue to use the traditional product.
Please let me know if you have any further questions.
Regards,
Kellyann Azevedo
Direct Sales Associate
Kendall-Jackson
800-769-3649”
There are thousands of wine producers across the planet. Are we just relying on what one person has to say?
ALL WINE barrels use this age-old process.
Not just this one vineyard.
From what I understand, the main problem with wine is if they use wheat/gluten as a fining agent. I’ve come across some actual research done on this, but can’t find it at the moment. I’ve calculated out how much gluten would end up in the wine with a small amount being used to seal the barrel, and it was below my intolerance level, but may not be below others’ intolerance level.
The arguments here seem to stem from how sensitive people are. In reading the celiac research (what little there is) it appears that there’s quite a range in how much gluten can cause damage to the intestinal lining. I haven’t found papers that report on that variation directly, but when you look at the figures, it’s clear.
“It’s ALSO a fact that some toilet papers and paper towels contain gluten. No, we don’t eat it. However, there’s many paper products that leave ‘dust’ in the air after using them and residue on your body.”
Show me the fact on this one please??
Many toilet paper products are tied to the the roll with glue..and as said before, many paper products are now being manufacture with wheat pulp.
again, let’s see this evidence please.
Celiac research centers will want to know this.
I’m sure it can be googled
I’m sure it can be. But you’re the one who said “It’s a FACT” and I thought maybe you’d have the evidence on hand.
Can I suggest we move on…
Perhaps see today’s post to give us all a smile:
http://glutendude.com/gluten/friday-gluten-free-funnies/
I’m smiling right now. And I’m done anyway.
I tried.
Happy Friday, Dude 🙂
I’ll be over here if anybody needs me 🙂
🙂
I see you.
Sometimes I feel like families who don’t take it seriously to have a visual demonstration or some kind of analogy. Like what of I invite you all for dinner but I serve rat poison. Ok, I can understand you don’t want rat poison for dinner. How about of I just throw it all around the kitchen? No? How about if I put just a LITTLE tiny bit on the CUTTING BOARD? (or maybe I am just overly dramatic … I do work in Theatre).