Holy crap am I behind on emails. I’ve got emails from my fellow celiacs sitting in my inbox dating back to October.
Yes…October of 2013 wise-ass.
Between work, the blog, life, holidays, etc., I’m not always finding the time to keep up with my email. Rest assured, I read each and every one of them. I also print them out and am making a wallpaper for my home office.
I made that last thing up.
Anyway…I really wanted to catch up. Your emails are important to me but I knew for this batch, I couldn’t do it on my own.
I needed help.
I needed a Robin to my Batman.
I needed a Clarence to my Bruce.
I needed a Jelly to my Peanut Butter.
I needed…I needed…I needed…IRISH HEART!!
I asked. She agreed. Thanks Irish!!!
Onto the mailbag….
Q: My daughter was diagnosed with Celiac when she was 5 years old. Now she is in 2nd grade, doing great with GF diet. She goes to public school (California) and brings her lunch box from home to school everyday. She asked me if she could have hot lunch from the cafeteria. I called the school district to see if they have any gluten free options. The only gluten free options was fruit and veggies. That’s not a meal. What can I do to convince the district to offer gluten free meals? Isn’t this discrimination?
[GD]: (Hold on…I’m putting my legal hat on. That didn’t do anything. I’m taking my legal hat off.) As far as being discrimination, I’d say a definite possibility of a firm maybe. In other words, I’d say it depends. If you want to fight the good fight, I suggest finding a good lawyer in your area. Maybe he or she will take it pro bono for a good cause. In the meantime, start with the principal and work your way up. Ask if there is anything they can do. I bet your daughter is not the only one in the school who would benefit.
Q: How do you cope with feeling left out? Sometimes I feel like I am left out when it comes to meals @ restaurants or a friend’s house. I get the “It’s not fair” feeling. Grr, any advice?
[IH]: Life isn’t fair sometimes, kiddo, but I do not view this as being “left out” if I have been invited somewhere. :)…Instead, I am thinking “whoohoo! Look at me! I have friends!!”
Honestly, I never feel left out, but I had to make some adjustments in how I viewed this whole thing and how easily my friends adapted as well. My friends and I always choose places where I CAN eat something safe. Also, my friends took the time to learn how to make safe GF meals. I gave them all a flexible cutting board for use in their homes and I help them prep the food so they can check with me if it’s all okay. (It always is!) I also bring a GF dessert or some good cheeses, meats and Crunchmaster crackers for everyone. Bottom line…You are the only who can get past the feeling that this “isn’t fair”, hon, and I hope you can find ways to look at this with a new perspective. If I can help further, just let me know (the Dude can reach me). But you CAN socialize and get past this feeling. I promise you!
Q: I was at a public event today with complimentary refreshments. I grab a cup and tea bag, pour some hot water from the urn and get some sugar, cream, lid and stir stick. Here’s where it got interesting: I could not believe what the stir sticks were made of. They were simply, I kid you not, pieces of dry, uncooked linguine pasta! I wonder if you or any of your audience have ever seen these things.
[GD]: Really? Pasta to stir your tea? With no warning sign? I’m not asking non-celiacs to bow down to us and serve our every need, but a little common sense and common courtesy folks. And this my friends is why we must continue to educate. Just crazy.
Q: I am the mother of the 13 year old that has Graves disease and I am also pretty sure he has CD as well. My question is rather than keep doing the blood work and feeding him gluten to get a positive result, wouldn’t it be smarter to just go through with the endoscopy since he has the symptoms & has Graves disease? What I mean is as long as he is having symptoms, there is damage that is being done…right?
[IH]: Depends on what you mean by “symptoms”. Many symptoms associated with NCGS are also celiac symptoms, so a doctor will want to do the celiac blood panel first. Most docs follow the “blood test first and biopsy second” protocol especially if insurance is involved. This really is a question for your doctor. Best wishes.
Q: I was curious as to whether you would be willing to give me a good rundown on what you eat in a normal day. I’ve dealt with all the typical symptoms of celiac disease for a few years now, and have just started my new diet without gluten and it. is. tough. I feel like my stomach is eating itself from the inside out, no matter how much i eat.
[GD]: Here’s a typical “healthy” day.
- Breakfast…a bowl of Lucky Charms.
- Just kidding.
- Breakfast…3 eggs with organic sausage, asparagus and onion. Piece of fruit. Black coffee. I gave up cream and sugar a few years ago.
- Morning snack…banana and peanut butter on a rice cake.
- Lunch…broiled piece of fish with veggies.
- Afternoon snack…almonds.
- Dinner…I have no set dinner. If Mrs. Dude is working, I usually just wing it.
If I stick to the above, I tend to feel pretty good. As soon as I get lazy and start eating snacks here and there, it ain’t good. But hey…we’re all human.
Here’s a snapshot of this morning’s breakfast:
Q: My office is STOCKED TO THE GILLS with snacks and food. Of course, most of it is full of gluten. Many of my coworkers eat all their work day meals for free at the office. I can’t do that, so I bring most of my own food and request that a few safe snacks be stocked in the pantry. The problem is, my gluten-eating coworkers can’t resist a Go Picnic or a squeeze pack of pureed fruit. Any tips on how to get their gluten-contaminated hands out of the very few things I can safely eat at the office?
[IH]: Going with the obvious “Keep it locked in your desk” answer here…..but seriously, who in their right mind would actually choose a two-bite Go Picnic hummus cup or edamame packet over a squishy bagel? That’s just crazy talk! :) And since the boss is buying the snacks, slip in a request for some chocolate covered GF crackers and maybe a few New Planets. Just sayin.
I was diagnosed in March this year and am very conscious about what I eat. However, I do not feel totally ok, almost as if I am still getting gluten. I was seeing your pictures about gluten free kitchens and wondered is this really needed? And it got me thinking, maybe this is my problem. I prep food, share everything and use everything that has also been used for gluten products.
[GD]: Not maybe…this IS a problem. All you need is a crumb for your body to have a reaction. You need your own toaster, cookware, strainer, etc. And if you have the room, keep a counter that is off limits to any gluten. The kitchen is where you will get hit. You need to protect it…and yourself.
Q: So I’m kind of pissed and confused. I have been having health problems my entire adult life. I decided to take it upon myself and try an elimination diet and found gluten was my major problem. So naturally I cut it out of my diet. Then I did research and read all about celiac disease. After two months gluten free I finally had the intestinal biopsy and bloodwork done (I re-glutened for a full week prior…HELL ON EARTH). Everything came back negative. My doc said “all your symptoms point to celiac, but without a positive test I can’t diagnose you. If I am “just” severely gluten intolerant (cross contamination greatly affects me) that’s fine. I just would like to know for sure. This wishy-washy bull crap is killing me. How far do I take this? Do I get a second opinion/biopsy? It’s not that I “want” to have celiac, I just want some damn definitive answers, ya know?
[IH]: But you sorta do “want” to have Celiac, otherwise you would not be looking for a diagnosis –and believe me, we all get this part, we really do!! I cannot blame you one bit for wanting an answer. I have met my share of frustrated sick people who went GF before testing and may never know for sure because they simply cannot stand a gluten challenge. (It would just destroy me, so I commiserate fully.)
Perhaps the one week gluten challenge was not long enough? How bad do you want/need a diagnosis depends on how much you can tolerate a challenge of several weeks. And therein lies the conundrum. If re-glutening causes “hell on earth” then I am not sure why you would want to do this to yourself. The treatment will still be the same.
Q: I am 18 and I have been gluten free for 8 months now and life couldn’t be more difficult. Slowly over the process of these months I’ve eliminate dairy, corn, and as of a couple days ago all grains. I am currently in university, and after being starting to feel fantastic the past three months, I caved into eating a couple of tortilla chips. Couldn’t hurt right? Wrong. The past week I have been absolutely miserable and completely depressed. I am also dealing with an undiagnosed eating disorder that is keeping me from getting better. I can’t stop eating which makes the swelling and bloating of my stomach worse, then I feel more anxious about my weight, and I feel like I’m spiraling out of control. I can’t focus in my lectures, and I’ve lost all motivation to do my assignments. I feel hopeless, alone and incredibly out of control. If you had any words of encouragement or tips, I would be forever grateful.
[GD]: It took me a few years to really start to feel better. Depending on the amount of damage to your intestine, you may still be in “healing” mode. As for feeling out of control, there is no worse feeling I know. I could tell you to breathe, relax, try yoga and a bunch of other techniques. But I’m sure you’ve heard them all. Perhaps if you had someone professional to talk to it would help. Hang in there.
Q: I was diagnosed with cd 9 years ago and since then put on 4 stone in weight .I am on a diet at the moment and have lost 2 stone but i know i will put it back on when i come off the diet . I also have an underactive thyroid gland and retain water i am bloated all the time .I just feel like eating gluten to get back to my original weight .My sister is also celiac and has not gained much weight. PLEASE HELP.
[IH]: You may wish to see an endocrinologist. An under active thyroid needs to be treated and if it is, then getting the weight off will be easier. A low-carb diet helps.
Under no circumstances should a celiac eat gluten purposefully to “lose weight”. That’s just asking for more autoimmune problems, destroyed villi, a risk of intestinal cancer among other things…. and your thyroid will never regulate.
Q: I am a pansy, plain and simple. For the past ten or so years, I’ve experienced a nice array of symptoms and I’ve wondered if I have Celiac Disease. However, I cannot bring myself to request the test, as I cannot bring myself to think about life without gluten. I love my pasta, my egg noodles, my bread, my pancakes… everything gluten. Despite the fact that after eating some of this (pancakes are the most noticeable), I feel like complete hell, I can’t seem to fathom the idea of giving it up. What are your thoughts?
[GD]: 3 words: It’s. Just. Food.
Giving up gluten is probably the easiest part of having celiac disease. It’s all the other crap that goes along with it that makes it such a PITA disease.
Q: I love coffee. I mean, I LOVE coffee. A lot. I am a bit concerned that it doesn’t love me back though. There is one area that stumps me and that is the research on coffee and whether or not there is gluten in it, if there is an issue with reactivity due to the body “interpreting” the proteins in coffee as gluten, etc. I Googled to see if anyone else out there had experienced an issue with it but found nothing specific to the brand. I did, however, find a TON of conflicting information on coffee and Celiac/Gluten Intolerant reactions. (Big shocker, I know) So I am reaching out to you. What do you know about coffee and gluten?
[IH]: As I am drinking a cup right now, I can tell you without reservation, plain unflavored coffee is gluten free. Despite what some internet sites may claim, these is no gluten in coffee and coffee does not “mimic” gluten nor will it destroy your villi. My biopsy this past August showed “no active celiac disease” ( just some intestinal scarring from years of being undiagnosed which is not surprising).
If anecdotal evidence is not enough to convince you, the leading celiac researchers and dietitians say the same thing: Coffee is safe for celiacs. I cannot find a single Pub Med article that says I should stop drinking it. Going with the “pros” on this one—and enjoying my cups o’joe.
(Dude note: If you’ve gotten this far, bless your little heart. Just a few more and we’ll wrap it up.)
Q: I was glutened by a Godiva martini (bummer) a month or so ago. I went to the Godiva website and it specifically states on their website that NONE of their products are gluten free. Fast forward to Cheesecake Factory gluten free menu featuring, you got it, a Godiva Chocolate flourless cake. Dusted with Godiva chocolate and some say a chunk of chocolate. According to the Cheesecake Factory “it has been tested and verified be gluten free”. Something to think about…are restaurants truly making sure their gluten free menus are really gluten free?
[GD]: The Godiva website does indeed state that “ALL of our products including solid chocolate pieces may contain gluten. Any person with a gluten allergy should NOT consume ANY of our products.” So how does Cheesecake Factory get away with it? That is a darn good question. I am going to reach out to them directly. In the meantime my fellow celiacs…you’ve been warned.
Q: I bought a bag of Mi-Del ginger snaps and the bag says, “Produced in a peanut-free facility that also processes wheat. Mi-Del gluten free products are routinely tested using the ELISA method to ensure there is less than 20 ppm gluten.” I’d seen “ELISA” referenced before but never looked into it. So i did, and I found this: http://www.ezgluten.com/ – Gluten test strips for the home user. Is this a legitimate way to test food at home?
[IH]: According to ELISA Technologies, Inc., the EZ Gluten Test Kit is “100% accurate at detecting gluten levels as low as 10 ppm in foods tested. In research terms, the test is highly specific and sensitive. It does not cause false positive or false negative readings.”
Okay, so the testing seems legit to me (and my chemist hubs and another chemist I know on celiac.com) IF you do the test properly. At a pricey $15 for each test, only you can determine if you want to know if the “tests as low as 10ppm” is as legit as “under 20ppm” designated already on the package. Seems like a waste of money to me (better spent on GF beer!!)
If you decide to get them, just do not waste your money testing bananas and chicken breasts okay? I promise you, they are GF.
Q: A friend of mine posted your Celiac Disease Symptoms on FB. I never thought I had it because I am not wasting away. I read it because I am a nurse and was just curious. I could not believe that most of my illnesses in the last 19 years were listed there. Going GF had miraculous results for me. Thanks Gluten Dude for posting the symptoms. It really changed my life.
Q: Just wanted to tell you our story. Last year my partner was constantly sick, headaches, achey exhausted, depressed and had a bunch of seemingly unrelated health things going as well as agonising digestive issues on an irregular but increasing basis. I did some research but his symptoms didn’t seem to match anything. Then I stumbled across your infographic. He had one symptom from every (male-relevant) category! Both he and his doctor said “Nah, probably not” but I insisted he be tested and you can guess the result. The difference since cutting gluten out of his diet has been nothing short of amazing. Daily headaches gone. Constant illnesses gone. Hayfever massively improved. Depression and lethargy gone. No agonising gut pain. And if he accidentally gets “glutened” the physical symptoms are all back within 2 hours. Anyway, just wanted to say thanks because it was your infographic that made everything make sense. Many thanks
[GD]: [Smiling ear to ear!]
Dude, your latest article about Hank made me think of jails, prisons, and celiac. Assume a celiac is picked up late one night and taken to the jail. How do they eat? I’m sure the local jail doesn’t make safe GF food. What about prison? Do they get “GF” food prepared in the prison’s kitchen? I think my celiac son had it right when he said “If I get arrested, no matter for what, it’ll be a death sentence.”
[IH]: I am pretty sure people are not served breakfast after spending the night in the tank. And I have actually discussed this with other celiacs and the conclusion I came to was this: getting a safe GF meal is not even in the top 5 worries I would have if find myself in prison.
I mean, have you SEEN any prison movies? Ack! Those big ole scary prisoners, the filthy toilets, the shared showers, the teeny tiny cells, those god- awful uniforms…I mean, seriously, who can pull off orange?
We can never get old, sick or stupid because then we go to nursing homes, hospitals or jail and, yes the institutional food will kill us.
Q: So my 14 y.o. daughter has been complaining of headaches, joint pain, tingling and numbness in her extremities and for the last many years we have been running her to the doctor with complaints of stomach pain and nausea. Recently we took her in with complaints of lower abdominal pain and went through the gamut of tests. Most of these symptoms have been deemed psychological complaints and dismissed. Surprisingly her psychiatrist recommended we try a gluten free diet as his daughter had similar symptoms and this worked well for her. At her follow up visit for the lower abdominal pain the pediatrician decided to run a test for gluten sensitivity. The report from physician came back positive but not positive enough for a diagnosis of Celiac disease. What the heck does that mean??
[GD]: It means your pediatrician is an idiot. First of all, dismissing someone’s physical ailments as psychological is as bad as bad gets. I hear it all the time in the celiac community. If the doctor can’t figure it out, then it must be in our head. Damn lazy ass doctors. Aargh!!
Secondly, there is no viable test for gluten sensitivity so I’m not sure what he/she is talking about. There is a specific blood test for celiac disease, followed up by an endoscopy. That’s it. That’s still the gold standard.
Please find another pediatrician if at all possible. I wish you and your daughter the best of luck and the best of health.
This last one is not a question…just a wonderful email I received. It’s emails like these that keep me going; that remind me that what I’m doing is important; it matters.
Thank you for bringing people together who had been through the same things and a place to go when I’m tired and itchy because my family has well-meaningly poisoned me over the weekend.
Thank you for letting me know that someone is standing up for us online when I’ve been shamed by a food-service worker or made to feel small for trying to stand up for myself.
Thank you for giving me something to distract me after gluten-induced days of anxiety or on the long nights that I am sure gluten-ataxia will take over my brain and leave me lost and alone.
Thank you for being the Dude.