See the above tattoo? That’s my left arm. If you can’t read it, it says “No Grain. No Pain.” I got it about a year after I was diagnosed with this aggravating disease. I figured if I’m going to mar my body for life, it should at least have some meaning, right?
And I actually believed this to. I figured if I just led a 100% gluten free diet, I’d be pain free. I mean…that is the ONLY cure. Well, not exactly a cure, but more of a prevention of other uglier diseases which celiac can lead to.
But here I am, five years later, and I still have more bad days than good days. I’ve dropped gluten. I’ve dropped soy. I’ve dropped 99% of dairy. What the hell else can I do, you know? A man’s gotta eat. Do I stop having my morning fix (coffee…not drugs)? Do I stop imbibing in the pleasure of an alcoholic beverage (or two…three…)?
At what point do you just throw your hands up and say eff it and dive into a big bowl of pasta? If I’m gonna be in pain, I may as well live my life.
But at the end of the day, I can’t…and I don’t. I’d like to live another 46 years and if that means making sacrifices to keep me going, even if it’s not perfect, it is well worth it. I’ll just vent once in awhile and then go eat my Udi’s.
great w/site.
did you ever worry that you had refractory celiac as you didnt really feel better? i have been ‘totally’ gf for 3 years (33 yr old male) and still often feel really average in the gut. i have some neuropathy as well
so annoying
You know…I still do worry about it. Most of the time, I just don’t feel “right” if you know what I mean. I haven’t gotten an endoscopy since the time I was diagnosed and maybe it’s time for another one. Have you been back to your GI at all since your diagnoses?
i went back after a short time and said the diet wasn’t working but he said it was too soon. i’ve not been back to see him – specifically because i fear him saying it’s time for another endoscopy and no healing. i know i would be very young to get this and more than likely IBS or lactose issues, but the worry is still there.
i’m sure most people would say “just go back” (including my wife) but the thought of having RC is worrying.
i don’t ever feel normal but generally i feel a little better than i did 2 yrs ago. some days are really average though
Go back. At least you know for sure either way. Does he/she put you under for the endoscopy? I sure hope so.
Well, I had the same problem till I watched a video by Dr. Osborne
about other non-gluten grains – or prolamines – which can be very
problematic to some of us because they might cause an immune
reaction, like corn, sorghum, millet, buckwheat to name a few.
It made a lot of sense.
Rice is the lowest on the prolamin list but my IBS sufferer brother is
highly allergic to it. Yeast antibodies are also a second high, after wheat
to my brother, who is not a celiac. We did the Enterolab test which proved to be the best for our family, specially for the ones who are non celiac yet, but are developing slowly other diseases. My dad is DQ8 and my mome is DQ2, so we have a double celiac gene in our
family.
Gluten is just one piece of the puzzle.
My brother felt better without the gluten but it was not enough to rid him of all the bowel troubles, but he finally responded well by eliminating all
the proteins he reacted positively on the Enterolab test.
I would try the paleo diet for a while and see how you feel. Yes, there
are many foods you can eat. It gaves us hope that we might be on the right track. I will post some of the links if you want. I love your
blog and your sense of humor.
Best of health and less frustration!
Thanks for the info VMR. I’ve been tempted to go Paleo for a bit to see if it helps. Will consider even more now.
Appreciate your kind words about the blog…
Hi Dude,
here is a link to a great video trying to explain gluten sensitivity and celiac disease. Yes, there are ,by far, more people who are gluten sensitive than celiac. That’s why we feel well by eliminating the gluten
and loosing weight is just a bonus – because we can’t digest it.
http://www.youtube.com/watch?v=cv5RwxYW8yA&feature=relmfu
Dr. Osborne lists here the amount (about 1 min mark) of all the gluten
proteins in grains considered safe for celiac – CORN has more gluten
than even barley??? Who would think? I booted the corn, sorghum,
millet and buckwheat as well. Lately I cut the rice and I achieved a different level of healing. I finally got it! Paleo is better for me and my
brother is also responding well. (grass fed meats, not (gluten) grain fed chickens or beef)
Just found a bakery in Los Angeles which uses almond meal for their
bake goods, which is the based of paleo baking. I felt great afterwards and I am happy to pass this on. All this years of a gluten
free eating was not optimal to me at all. Yes, I felt better, but not great
like I do now. I am not a celiac but affected imensely by gluten. My
list of symptoms is huge but slowly fading away. Be well!
http://www.youtube.com/watch?v=8CNsSGb5w8o
Dr. Fasano, considered the biggest name of celiac diseases talks here about celiac and gluten sensitivity, which he admits lately is a
real thing. The fad diet is helping all of us gluten sensitivity sufferes, not just the celiacs. I think the celiac are the lucky ones because the
symptoms are more clear and obvious, but the ones with gluten sensitivity have all those mysterious symptoms, hard to link to gluten.
Our genetics have to do with it. I am a DQ2 and DQ8 carrier – the
two celiac genes.
Dr. Peter Osborne (Texas) and Dr. Viccki Petersen (Silicon Valley) are the only ones who
established this connection. Neurological problems and gluten???
http://www.youtube.com/watch?v=k-2q4RZLbc4&feature=relmfu
Hi,
I am curious as to how your gluten free journey is going. I went grain free a month and a half ago after a couple of ER visits and a major health scare. Grain free has helped a great deal though I think it will take time to heal a lifetime of grain damage done to a body. I was never formally diagnosed with celiac but found out by elimination diet as well as what happens when I have grain re-entry into my system. I hope that you are feeling better. I will tell you that the pasta is not worth it.
Have you ever taken Cipro or Levaquin or Avelox? Look up fluoroquinolone toxicity.