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Ever since giving up gluten, dairy, eggs and soy almost 4 weeks ago I am doing very well. But there is a skeptical part of my mind that says maybe I'm not really sensitive to all of those things even though my enterolab results said I was.
In short, something within me wants to eat a doughnut to see what happens.
Can anyone tell me their experiences with this? Did you feel this way, and did you go through with the challenge? What happened?
I'm also struggling with the emotional connection with this disease. I know that I flare when I have stress, but I almost don't want to say that because I'm afraid people will conclude LC is all in my head. Somehow "proving" the food connection with a food challenge would show that it isn't all in my head. But how much proof would ever be enough?
I've only knowingly challenged my casein and soy sensitivities. I wanted to believe that I could still eat my beloved goat cheese, and the casein would be somehow different than cow's milk. A few hours later I was enduring battery acid D, and I knew, no more goat cheese. I still have GF soy sauce, chocolate with soy lecithin, and restaurant food surely cooked in soybean oil, and I don't seem to have trouble with them. Then again, maybe I would have normans if I stayed away. I think the dose and form of the soy makes a difference for me.
As far as gluten, don't worry, you'll surely end up with an accidental challenge before you know it. It's hard to be 100% all the time, especially if you eat at restaurants or well-meaning friends' or family's homes. And then you'll know... No need to scarf down a donut, unless you really want one last hurrah. But keep in mind the gluten antibodies take much longer than the others to clear from your system, so every little challenge is a setback.
My MIL recently went GF and told me she only cheats once a week by eating a breadstick at her favorite italian restaurant. I told her it would be better for her to eat an entire cake once, than nibble on a breadstick every week, as far as her gluten antibodies (and resulting damage) go.
The mourning process over your diet is very real and will take a fairly long time. I remember stages of anger and depression, ending up in tears at a grocery store or nice restaurant.
for any donut, cake, bread, cookies, pizza, breadstick, candy, ice cream, why poison yourself with gluten since there are many many glutenfree versions available. Maybe it is more expensive, but it saves you a lot of trouble.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
I gave up gluten a wk ago ,this past wknd I went out and had a steak/ch sub and processed ice cream ( I gave up dairy 4yrs ago) guess what the next morning belly was not happy. I kind of figured I would have issues ( no ones fault but my own) Like Zizzle said we cannot be 100% gluten unless we make it our selves. I learned that with dairy yrs ago,it is hidden somewhere.
It's not the expense of the alternatives. I feel skeptical; almost like this was too easy and can't be real. Probably my skepticism is driven by the medical community's denial of diet having anything to do with MC. I wish there was good peer-reviewed research on this topic (though I understand why there isn't--there's not really a profit to be gained by uncovering the diet connection with MC).
There is no denying my experience of improvement with this diet, though. I don't know why I can't just trust that.
Karen I do understand that feeling, maybe not as strong as yours, but when I started my diet, I had my questions about it too. Is this really helping, and on what is it based on. We all wish (I think including himself) Dr Fines research findings on MC and gluten would be published, that would be a first start to recognize the relation between gluten and MC. But as long as the mainstream medicine keeps the windows locked in their ivory towel, this will not happen.
I did not blindly go gluten free, because "everybody does it here". I already discovered pre-diagnosis, there was a relationship between gluten and my D. I was convinced it was celiac. Also gluten would explain many many many other symptoms I had for almost ten years, bloating, brain fog, fatigue, brushing, lactose intolerance and many other things.
I did a lot of reading on this board and became convinced that the people here don't just do something, but really know what they are doing. The diet here is based on years of experience of many members here, with very good results. That was one part of thrusting the method and give it a try. I also did a lot of reading on Dr Fine's website and I got convinced he is not just a random doctor trying to make some extra money with stool test. To me it all made sense on his website, is backed up by research, I also did the testing and based on that I started the diet.
So yes I can understand you are confused about the diet, is it really working and why does the medical world not support this diet if it seems to work so well for the people with MC. Well I think this is mainly because many GI's only see a view patients with MC in their practice (my GI told me he sees about 4 to 5 every year), so what do they know about MC?? Not much. And of course the huge denial of the medical world in general of a non-celiac gluten intolerance is also not helping.
For me I saw my proof only after 9 months of diet, when my bloating disappeared, the brain fog got better and now after almost two years of diet, the fatigue is getting less. So for me to see and feel difference takes a long breath.
What also was important to me, knowing that there is not much else to cure this disease, yes medication to suppress the symptoms. And also, I am convinced if I keep poisoning myself with gluten (even when I could suppress this with entocort) in the long term I will pay a price for it, for example my osteoporosis getting worse or other damage in my body because of the gluten
But of course finding a path into remission is a very individual path and we are all different, so if you really question if the diet is working for you, or if you need it, than well I should say try it out and see what will happen.
And of course I do understand it is not about the money, but sometimes I really don't understand people want things with gluten in it, when so many other tasty things are available too.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
I wish it was as easy for me. I have been eating chicken, rice, tea and potatoes. Not even a vegetable. Home made stock for soup.
I have serious GERD, and tried chewing gum, discovered, the hard way, the sorbitol was bad; tried sucking on a hard candy (trying mentos - disaster because of the wheat sugar in it); sweet potato chips - I seemed to have a reaction; and now am still eating chicken, rice and potatoes. I am missing cheese, crackers, vegetables, ice cream, you name it I miss it.
Even prednisone didn't really help, and the side effects, AND the weaning off were so bad that I am reluctant to try entocort because it's another steroid.
I'm jealous that after only 4 weeks, you are seeing amazing results - good for you!!! I went gluten free 15 months ago, dairy free 14 months ago, and yeast free when I got my Enterolab results. For each thing I dropped there was a big improvement. However, every time I thought I had it figured out, it fell apart again, because some other ingredient started giving me trouble.
Here I am 15 months later, still struggling with the diet, but I would never consider purposely trying gluten. I believe very strongly that it is something I can never have again. I got accidentally glutened not to long ago, and boy did it show me who was boss :(. I agree with others here that there are so many delicious things, including donuts, that you can get gluten free, so why risk a set-back in your wonderful progress ???
Anyhow, the bottom line is that you have to figure out your path for yourself. You have all the same information available as the rest of us, but you're the only one who has to live with yourself, so if you believe it will satisfy you psychologically to do a challenge, I say go for it.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari, I saw results the next day after starting the diet. I wasn't completely well, of course, but I saw a marked improvement. That's why I think it can't possibly be true--everyone else seems to take much longer than I did. Is it possible that my flare just happened to let up when I started the diet? Maybe if I had done absolutely nothing I would still be better. I need to know, because I need to feel like I'm doing the right things to avoid that next flare.
Leslie, I don't think I was ever as sick as you are, and I don't have the complications you have. Maybe that's why it kicked in more quickly for me. I hope you get better soon too.
Maybe I'll just wait until I'm accidentally glutened. Like Zizzle mentioned, that's bound to happen eventually!
In the meantime, in case there is any doubt, I am so so thankful to be better.
I've always maintained that the psychological component in MC, is equally important to the physical one. Each of us is dealing with a unique body, mind, and circumstances. As I'm listening to you, I'm starting to lean towards the idea that you need to do the challenge in order to get peace of mind. Lots of luck to you with whatever you decide to do!!!
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Karen,
I also experienced dramatic improvement within a day or 2 of starting the diet. I was great for a couple of months (normans, etc), but then the other food sensitivities started becoming apparent. I was never as sick as my gluten-eating days, but I wasn't out of the woods yet. As many here have learned, your immune system is so tired from battling gluten for so long, it can't concentrate on other foods. Once the gluten reactions are gone, your immune system can get back in action and sometimes makes the other secondary sensitivities more obvious.
I gave up gluten, eggs, soy, and dairy all at once because I reacted to them on the enterolab tests. I knew that others had the exprience of giving up gluten, being better, then suddenly reacting to something else and I wanted to avoid that. Of course, that made my recovery seem "magical" to me and has me in this current situation of wondering if it can really be true. I guess I'm hard to please.
I have spent some time over the months since my diagnosis being angry at the changes it required, and mourning the loss of my, up to last winter, very good health. I have challenged both gluten and dairy along the way, both big mistakes. I won't do it again, as the results aren't worth it. I am trying to come to a place of acceptance that a diagnosis of LC is not the end of the world, but it hasn't been smooth, as the year has included other losses that have impacted how I've been feeling. I do feel much better having eliminated gluten and dairy, though I SO miss great Italian bread and all forms of cheese. With the recent addition of a Renew Life probiotic, I
am feeling significantly better.
Right now, I'm all about not rocking the boat. I have a couple of trips coming up, and I'm not doing one thing that would jeopardize that.
Karen,
My MC is NSAID induced and almost as soon as I stopped taking the NSAIDs I went into remission. I have also gone GF; soy and dairy don't seem to bother me. After being off NSAIDs for about 4 months, I convinced myself my gut had healed enough for me to try taking NSAIDs again. I took one and was fine, so the next day I took another. That night the truck hit me and it felt like I had the flu for 3 days. The watery D came back and made me realize I really hadn't missed it at all! That convinced me that NSAIDs are completely off limits for me. You may be like me and need the confirmation of having a bad reaction to confirm the changes you have made are worth it.
Somehow "proving" the food connection with a food challenge would show that it isn't all in my head. But how much proof would ever be enough? 
I still have GF soy sauce, chocolate with soy lecithin, and restaurant food surely cooked in soybean oil, and I don't seem to have trouble with them. Then again, maybe I would have normans if I stayed away. I think the dose and form of the soy makes a difference for me.
But keep in mind the gluten antibodies take much longer than the others to clear from your system, so every little challenge is a setback.
I told her it would be better for her to eat an entire cake once, than nibble on a breadstick every week, as far as her gluten antibodies (and resulting damage) go.
I guess I'm hard to please.
