Hello everyone. Happy Tuesday to you all. Let’s start with a joke today because why not!?
A photon checks into a hotel and the bellhop asks him if he has any luggage. The photon replies, “No, I’m traveling light.”
No good? How about this one?
Pavlov is sitting at a bar, when all of the sudden the phone rings.
Pavlov gasps, “Oh shit, I forgot to feed the dogs.”
Ok…today’s order of business is a reader’s celiac rant. It’s been too long since I posted one of these and I have 140 of them sitting in my inbox. This comes from a frustrated celiac whose doc said she’d feel better by going gluten-free. As we all know, it’s not that simple.
If you would like to help her out and make a comment (bless your heart), all I ask is that this does not turn into a “paranoia post” where gluten is everywhere and you must live in a plastic bubble if you want to stay healthy.
Remember. Careful is good. Fearful is not.
Ok frustrated celiac…the floor is yours.
First-off, so glad I found your site! I was diagnosed with celiac 3 years ago this past November (11-11-11, talk about an omen!) and unfortunately, am in just as much pain and unpredictability as I was when diagnosed. Granted, I probably had it for 7+ years when I think about the symptoms, but I was one of the “lucky” ones that was told right after endoscopy that “I will feel like a new person within 6 months of going gluten-free.” This, from the HEAD of GI at a major Portland, OR hospital!
I travel for business about 2 weeks a month and am just spent trying to make excuses for why I cannot partake at big exec dinners (I hold a fairly senior position). That however, is not the reason for my “rant!”
My challenge is that I know I need support nutritionally, and also worried about all the other symptoms I continue to manifest (DH rash for the first time last October for 8 solid weeks of hell and oh did I mention, I am a trainer in front of people on a regular basis?!).
I have also had my teeth continue to decline (need two more pulled as they go so quickly; cannot be saved as my nutrition is declining, rather than improving since going GF) and cannot sleep more than 3-5 hours per night.
I do not trust any of the medical direction I have gotten: I a reasonably intelligent person; I am confident in my abilities to control and address cross-contamination (I do not eat out at all, only buy certified GF products without cross-contam clearly stated and only about 5 regular products at that and only eat cooked meals that are by me or my husband’s hand – he is probably the most devoted to all of this being recently unemployed and generally liking to cook!), but I know I need more support.
Since I removed the gluten from my diet, I also removed most of my nutrition. There is only so much I can do on the road when I may only have a refrigerator to work with, thus I get very drained while on the road and lose weight. I get home and try my best to put it back on but had a recent bout of 10-days of pain (pancreatic swelling, pressure and knife-like jabs that drop you to your knees) while home that left me drained even before I went on business. I am now in full-out brain fog that I had been mostly able to control or live with, I should say. I train credit at a major bank so I cannot “fake it.”
Given the fact that I cannot take another “GI DOC” simply telling me to buy GF processed foods that are often cross-contaminated, or being told that I am depressed (well hell, yeah, but managing the celiac will manage that!) and that I should take all kinds of pills.
This really turned into a non-sensical rant from normally, a very organized communicator. You are getting me on the last day of a business trip and operating on 3 hours of sleep. I do apologize.
I want to thank you for your reality: I do not think I would be so cracked about still feeling like complete ass if Mr. GI Head had not set me up for “6 months you will be a rock start again.” I can say that it took me 3 months to be sure I was GF and not cross-contaminated, so I will take some responsibility, but after all the “roadrash” damage he described and I saw on the DVD video of my small intestine (about the first 12″ is 86’d), REALLY??? 6-months for extensive damage and complete villous atrophy?
My Mother is an RN so we have been very rudely awakened to the “real story” behind intestinal recovery…..meaning, most of the medical community still does not acknowledge that there is no “Heinz 57” healing process for a celiac. She understands the politics and the “God Ropes” associated with medicine, in general. And of course the almighty dollar/drug rep connection. Can only imagine how “educated” docs will be once there is a money train behind a drug rep with a pill to manage celiac!
OK, my question: I am in the Kaiser system (not helping!), and would like to know if you think vitamin shots and a try with a celiac-trained nutritionist would be worth my time? My Mom, again, the RN, wants me to go PRN and admit into the hospital to rest my GI tract. She does realize that this is not terribly realistic with needing to maintain a job to pay for the health benefits, and as the only provider right now.
I really appreciate your advice, the honesty and yes, none of the “I have never felt better in my life since going GF” crap.
Looking forward to any thoughts you might have.
Thank you for all that you do.
Wish I would have found you right after diagnoses, not just last week.
I wish you would have found me too. Heck, I’m still trying to find myself some days.
Let me tackle a few of your issues as best as I can on 5 hours of restless sleep.
– Stop making excuses about not partaking in company dinners. You CAN eat out if you take the right steps. I’ve laid out your plan of attack here. Also, since you have a senior position, can you pick the restaurant? My point is, there are solutions to most problems. Don’t let fear stop you from living.
– Lord knows most of us got no guidance from our doctors when we were diagnosed. Really pisses me off. “Go gluten-free” is pretty much all we hear. No direction. No guidelines. Here…John Pinette (RIP) explains it pretty well:
– Smart move staying away from the processed GF crap. That’s a mistake many make when first diagnosed…me included. I loaded up on “replacement foods”. Bad idea. Eat smart. Eat mostly whole foods. Indulge every so often. It’s all about balance.
– Vitamin shots and a nutritionist? I’d say it can’t hurt. But will it speed the healing process? I have no idea.
– My biggest piece of advice: Be patient. It honestly took me a few years to start healing. I was beyond frustrated and kept going back to my GI and spending a small fortune to find out “what’s wrong with me”.
You know what was wrong with me? I’M A CELIAC. Our insides are messed up and this fun autoimmune disease can be a tricky little devil.
Thankfully I’ll only have it for the rest of my life 😉