It’s the May Mailbag

celiac mailbag

Forgive me community for I have sinned. It has been 15 days since my last blog post. Definitely my longest stretch between posts. I even got this email yesterday:

Gluten Dude. Did you get bored with your blog? Is it discontinued? Nothing recent has been posted. If you got a better gig, congratulations. If you are dumping the site, let folks know before anyone wastes time on rants, info and other topics.

Nope…not bored. Nope…not discontinued. Nope…not a better gig. (Although I am now a brand ambassador for Udi’s…hee hee). I just have a lot of gigs going on in my life AND I’m finishing up my eBook which I’m hoping to launch by the end of the month.

Since it’s been awhile, and I’m behind on emails, I do believe it’s time for a MAILBAG. I have no idea why I put that in caps.

I have been GF since my CD dx almost two years ago and for the most part, doing better (thanks in a huge part to you and this community). However, a few days ago I began not feeling well. First with the big D, progressing to ~~~ Never mind, you know the drill.

My first thought was, have I gotten gluten somewhere!? To this day I cannot see where it may have gotten in except possibly one place. I used liquid soap at a friends house. My Q is, are hand soaps, like the liquid ones in pumps, are they GF? And what about the ones in hospitals? I don’t know if i am being silly or not, but I weary am sick and cannot figure it out. Your knowledge would be greatly appreciated.

When trying to find answers to your health, there are no silly questions. But unless the soap goes from your hands to your mouth, you cannot get glutened through the skin. You can certainly have skin reactions if you have DH, but gluten cannot get to the intestines through the skin. Keep searching for the answer, or just accept that you got hit somewhere and focus on getting back on your feet.

When I was diagnosed with celiac, my husband was so happy to find out I didn’t have MS and all the other things I’ve been diagnosed with. Problem is, he doesn’t really get how shitty it is when he isn’t supportive and says, “Oh babe, you can cheat it’s fine. Just a little bit won’t hurt.” Well I always get hives, I vomit, I go numb, everything. I’ve relapsed several times. I know I need to be more stern which I have been starting now, I’m tired of him thinking it’s okay to feed me bad food. I don’t know how to get all this through his head; it’s just not getting through his skull. I don’t like to be a nag. Kinda at a loss, he’s my best friend but doesn’t get it.

Oh boy…can’t tell you the amount of times I’ve heard of a similar story. It kills me. Let’s not focus on WHY he doesn’t take your disease seriously for now, but WHAT you can do about it. 1) You are NOT a nag. You have an autoimmune disease and MUST eat completely gluten-free. Do not let him make you feel guilty about this. 2) Does he understand the disease? Has he educated himself at all about it or does he get his info from the media? 3) If my spouse was this way about my disease, I wouldn’t put up with it. Period. It’s your health we are talking about. If he doesn’t care about that…well…not the kind of best friend that I’d want. Just saying.

Can you drink champagne on celiac diet?

Yep. Cheers.

I just read your article on PF Changs. I thought it was just me. I had the very same experience. The restaurant had been my go to place. Until last year, i was completly satisfied, without after effects. Then, last year, things changed. Sick every time I go. (Only twice ). Now, never again. Too bad. I don’t know what changed, but, I won’t chance it again.

Smart move. Always listen to your body. I still don’t know if they are careless with gluten, or most of their dishes are just so ungodly unhealthy that it affects our compromised symptoms. But I haven’t been in 5 years and my body is quite thankful for it.

My daughter was diagnosed with Celiac Disease when she was in 1st grade. She is in 8th grade now. Early on we closely managed her diet, risk of cross contamination, and stressed the importance of washing her hands. As she grew older she took on these responsibilities. Over the past year we have seen her diligence become very compulsive. Her keen awareness for all things gluten is becoming a worry. Sometimes she will chose not to do something because gluten exposure is an underlying concern. Here is an example:

Scenario: We go out to eat. Menus are on the table. Server puts bread on the table and people eat bread while holding onto the menu.
Concern: Risk. There is gluten residue on the menus.

Compulsive behavior is never healthy. Yes…she needs to be very careful. Yes…she needs to be diligent. But constantly living in fear is not living at all. You cannot get glutened just be being around gluten (unless it’s air-born, like flour.) If she touches something that MAY have gluten on it, simply have her wash her hands. If gluten does not enter your system, you cannot get sick. She’s got a life to live. Try to help her live it.

On the April 19 episode of American Housewife, the school teacher returns homemade cupcakes stating all food in school must be labeled for gluten and allergens. The main character replies that there were no allergies or gf when she was young so there fore it doesn’t exist. It’s fake. So uneducated it outraged me!

I hate Hollywood. Seriously folks, move onto something else. It’s totally played out (and it was never funny to begin with.) Don’t waste your energy on it. Let them wallow in their own ignorance.

I was diagnosed about a year ago and have been sticking to the gluten free diet ever since. It sucks. But it’s manageable. However, my situation is about to change, as I will be moving out and boarding at a school overseas in a country that has practically never heard of celiac disease, for two years. They do not have gluten free substitutes of anything – and this is not an exaggeration. Their entire diet is based off of bread. The school itself is trying to be as accommodating as it can, but is as aware of the limitations as I am. They have offered to feed me seasonal vegetables. I appreciate their efforts but I cannot live off veggies, and even if I could, I don’t know if I’d be able to handle the social side of the situation.

So I come to my question. I am a silent celiac. And I know that eating gluten is always bad, no matter what, but I feel completely stuck here. Even if I adjust to a caveman diet on campus, I will have no options when we travel off campus, and I can’t just not eat. So – how bad would the long term effects be if I gave up the gluten free diet for two years? Any advice you can give would be appreciated.

Such a tough situation to be in…sorry. I will say this though: Silent Celiac = Non-silent Celiac. Meaning that just because you may not feel ill, the damage is still being done. So two years of eating gluten can do serious (possibly long-term) harm to your system. I would look for every single option there is. Any chance you can get a place with a kitchen? Any local restaurants you can contact and explain the situation? I’d hate to see you not go, but I’d hate it ever more to see you eat gluten for two years.

Firstly, I just want to say this is one of the best celiac blogs I have ever come across! I was diagnosed last year and have been slowly healing, and this is the first blog that I’ve read that is both helpful and makes me laugh! 🙂 I do have a question about wine and wondering if you can help me out. I’ve read on so many pages you have to be careful that wine is made in a steel barrel – but I read on your blog not to worry about that rumour. Can I ask where you found that out? I’ve been searching for that answer!

Thanks for the kind words. Inform and entertain is what I try to do. To your question, if red wine had gluten, I’d be dead by now. And here’s a link to back me up.

My wife – 35 years together and counting – is highly intolerant of gluten. She and the rest of our family are actually paleo, so no grains either. I, on the other hand, draw the line at road-kill ‘possum, but can eat anything else with no physical problems. I’m writing to ask: is there a way for me to continue eating gluten (away from our kitchen) and still be able to kiss and get frisky without setting her off? Mouthwash or some
other protocol? Like I say, she is HIGHLY intolerant.

Congrats on the 35 years. The fact that you are asking me this question explains why you’ve been together for so long. Very cool. If you’ve recently eaten gluten, just brush your teeth or use mouthwash to play it safe. Then kiss and frisk away!

So my hubby was “glutened” at a restaurant severely! He advised them prior and confirmed 3 times all was gluten free but it wasn’t, which they admitted. He went into Anaphylaxis and went by ambulance to the hospital and was treated and released. They took total responsibility and threw out some ridiculous amount which we didn’t accept and then all of the sudden there are “conflicting” stories…ugh!!!!! I am so frustrated because people do not understand this is serious! He almost died!! It’s hard to have no one to talk to that understands what we are going through…anyway…rant over.

And THIS is why we must continue to advocate and educate. And although I may not be blogging quite as much as I used to, it’s why I’ll never stop.

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11 thoughts on “It’s the May Mailbag”

  1. Glutendude, have you considered that you can get glutened through soap not through skin absorption but by having soap residue on your hands, then eating? Think of highly perfumed soaps, something is still on your hands…

    1. We try not to use any body care product (shampoo, conditioner, lotion, etc) that has gluten in it. Simply because my kids are going to put their hands in their mouths or rinse their hair and the water will get in their mouths. Granted they are children and once they are older they will be better at not doing this… but I try to go a little overboard with all of the risks now while they are young so that when they are teenager and ease up to fit in… they are still safe.

  2. To the mother of the teenage girl: I am a mental health therapist and one of the things I see quite frequently is people with disordered. If you have the resources you might get her into see a counselor/therapist to help her work through her fears. My biggest concern for your is that eating disorders can actually become present with celiacs and vice versa. Some people use the disease as a way to not eat because “they cannot” or “its too scary.” Hopefully she can learn that you cannot stop living even with this disease!

  3. GD- I know the Mayo Clinic etc… is stating that gluten can not be absorbed through the skin…I am skeptical.( Molecule too big- what’s the basis?) Our skin is our largest organ of absorption. (Not to mention we put our fingers in our mouth or eyes on occasion.) When I had products containing wheat I rashed on my body, hair (Exhaustion, D, etc…) . When I fed my animals wheat containing feed- I rashed & was sick for a long time. Changed all my feed. I just changed their straw- again- rashed out. With our skin being our largest organ of absorption I think more research needs to be done. Anyhow, I am not taking any chances. I am sick more than I am well.

    To the woman with the husband who “doesn’t get it”. This is such a hard disease for people to wrap their head around. Especially the older generations who didn’t have it when they were young. I have gotten real snarky in my replies to my family because they are dealing with their own denial of sensitivities & would rather pop an immodium. End result of this disease is cancer or death. Would you give a kid with a peanut allergy a peanut butter sandwich? Would you give a diabetic a diet of sugar? Every time there is change you will have resistance. Be your own best friend and start preparing your meals in a safe kitchen. If you go to an event- make your own food and keep some aside so you won’t worry. Best of luck to you.

    1. Christina

      I am also an intense DH sufferer (CD, 3 types of cancer and 5 retina surgeries from previously undiagnosed CD). After 4 yrs of as GF as possible, I’m doing pretty well FINALLY. I just took my first flight in 7 yrs (to gf concerned Denver). Although the restaurants did a wonderful job feeding me, it’s taken over a month for my skin and gut to return to my new normal, which I can only surmise was caused by minute amounts of CC and/or some external contact because everything I ate was naturally GF and the restaurants certainly appeared to be very careful.

      I’ve also wondered about how much my skin contact with gluten affects me systemically and internally with my level of extreme intolerance of gluten.

      My Dad recently died from extremely painful bone cancer in January. During our care for him, I had to administer Dilaudid orally (pills and liquid) and Fentanyl patches for pain control. The hospice nurses strenuously admonished me to be VERY careful even touching and/or handling these extremely potent drugs and told me to do NOT even let them come in contact with my skin. I saw this week the article linked below regarding a police officer who almost died this week just by touching Fentanyl during an auto drug bust. So obviously our skin does absorb internally and systemically.

      http://www.express.co.uk/news/world/804901/police-officer-overdoses-after-touching-potent-fentanyl-drug-weapons-mass-destruction

      I certainly don’t want to scare anyone and I feel for the little girl who is currently concerned about touching menus. As sensitive to gluten as my body is, I’m not at really concerned about such casual contact as a menu with gluten affecting my everyday life. However, as easily as Fentanyl is obviously absorbed internally by external skin contact, for some of us, we should at least be aware of the possibilities in which gluten can affect us while remaining completely rationale about living our lives. I don’t rub flour on myself and I’m very careful about skin products and toothpastes; however, as sensitive as my previously tough calloused hands are now (I lose several layers of skin from time to time with no real known causes) I don’t doubt that skin contact with gluten could be the culprit and, at this point in my gf journey, my Drs won’t rule out skin contact with gluten as the culprit.

      I know my Drs don’t know everything about CD and DH, as they have admitted to me personally, and it’s a little disconcerting how many medical personnel will discount the possible affects of gluten on some of us without having the slightest idea of what they don’t know.

      We should always be rational and scientific with our daily thought processes and practices, but as Gluten Dude always preaches, nobody knows our bodies better than ourselves.

      1. I saw that article~scary stuff out there now; drugwise! DH sucks & I don’t think the Dr.’s know enough about CD. Luckily, mine at least has an open ear & I am scheduled for a whole battery of new tests. Just maintaining health without a flare is my life goal right now. Two months barf free right now! Sometimes it’s the small victories. Good health & prosperity to you.

    2. Fiona Harrison

      Have you been checked for having a wheat allergy as well as coeliac disease? Sounds like you it might be worth getting an allergy test if you are getting rashes as a topical reaction.

  4. The girl in the restaurant had a point! How many of us get up and wash our hands between ordering and eating?! I’m starting to wonder how many times I’ve been glutened this way at restaurants that have good practices but make me sick anyway. Huh.

    Don’t pathologise the girl. At least not based on this example! Hell, I won’t eat at restaurants at all. Been sick too many times to count. Is the therapist coming for me too? LOL

  5. Fiona Harrison

    Sometimes gluten can be somewhere you just didn’t think to look, I am usually very careful (14 months post diagnosis and antibody levels down to normal in first year) . I was feeling ‘glutened’ the other week, took me ages, and a question from my Mum, to realise I had eaten pickles with corned beef for 4 days and not once did I think to check the ingredients (thought I’d had them since my diagnosis, was wrong). Boy did I feel stupid. Also, to the people with the anaphylaxis story – you must have an allergy to wheat or something else as pretty sure coeliac disease, being auto-immune and not an allergy, doesn’t cause anaphylaxis. I’d be getting that checked out!

  6. A comment/question for the person who is off to boarding school in a non-gf country. Firstly, having just got home from a trip to Indonesia where I basically lived off rice and veg for a week, I feel your stress, and can barely imagine what facing a couple of years in that situation feels like. Will it be possible for you to supplement the fresh veg your school can provide with other items sent from home via the mail/Amazon/other internet sources? Or at least can you pack enough non-perishable gf supplies to keep you going when off campus?

  7. I have a wheat allergy and am not sure if someone with celiac could be affected similarly, but I had problems with liquid soap that a person had refilled because he/she mishandled the pump, possibly with residue on his/her hands, or the pump was placed in a spot with residue on it. I then used the soap to wash my hands and then ate food with my hands. I ended up with symptoms. I explain this more here, http://ihatemyglutenfreelife.com/more-exposure-issues-at-work/.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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