Gastro Put Me On Gluten Challenge

[Ursa Major]

Hermit, I understand your position. I experienced an instant, dramatic difference to my health within a DAY of stopping gluten two and a half weeks ago, and have been improving ever since........my terrible backaches are going away, the diarrhea has stopped completely, my energy level is up, the Tourette tics are lessening, I'm off the codeine I've been taking for years for fibromyalgia (which must have been gluten intolerance, turning to full blown celiac disease this summer), because the awful pain is getting less every day. In short: The gluten-free diet is obviously working for me, no doubt about it. And until yesterday the gluten was the only thing I stopped having (I don't bake much, so it wouldn't have been a question of whether it was eggs or gluten that was the problem). I stopped the nightshade family more than two years ago, because it was a huge problem. But that only helped for certain things, without improving my overall health.

But if you really see no evidence of it working, it would be good to know if you're missing something else. And to know for sure if gluten is a problem.

Now, I do believe that all grains are a problem, and that potatoes aren't just poisonous to me, but everybody else as well. But everybody has to decide these issues for themselves.

I hope you'll get the answers you need.

Ursula

[VydorScope]

Hermit, I understand your position. I experienced an instant, dramatic difference to my health within a DAY of stopping gluten two and a half weeks ago, and have been improving ever since........my terrible backaches are going away, the diarrhea has stopped completely, my energy level is up, the Tourette tics are lessening, I'm off the codeine I've been taking for years for fibromyalgia (which must have been gluten intolerance, turning to full blown celiac disease this summer), because the awful pain is getting less every day. In short: The gluten-free diet is obviously working for me, no doubt about it. And until yesterday the gluten was the only thing I stopped having (I don't bake much, so it wouldn't have been a question of whether it was eggs or gluten that was the problem). I stopped the nightshade family more than two years ago, because it was a huge problem. But that only helped for certain things, without improving my overall health.

But if you really see no evidence of it working, it would be good to know if you're missing something else. And to know for sure if gluten is a problem.

Now, I do believe that all grains are a problem, and that potatoes aren't just poisonous to me, but everybody else as well. But everybody has to decide these issues for themselves.

I hope you'll get the answers you need.

Ursula

<{POST_SNAPBACK}>

See thats how it was with my son, things started to change imeditialy on diet change. That was enough, later we got the blood test results which confirmed it, but realy did not need to know that, his health already proved it.

Its the grey areas like me and Hermit where this corse makes complete and total sense.

[aikiducky]

Hermit, I was wondering if you have cut out dairy altogether from your diet, or just lactose, and still eat low-lactose dairy products? I used to think I was only lactose intolerant, but I tried going completely dairy free for a while, and trying some low-lactose stuff later made me feel very lethargic again. Maybe youre completely dairy free already and it's something else, but otherwise it might be another idea to try somewhere along the line.

I'm in the camp of if in doubt, go back on gluten and see what happens. I think it's totally reasonable if your symptoms haven't improved. Anyway, if gluten really is a problem, you might find that out quickly after starting to eat it again...

Considering how long people in the western world generally live nowadays, I'm not inclined to take a very radical view of the western way of living. I think it would be better that people are aware of these things, but in the end everybody has to make their own decisions.

Pauliina

[Claire]

Me again. I hope I didn't leave the impression that I am against testing for celiac disease and or non-celiac glutem sensitivity. I am absolutely passionately opposed to the gluten challenge. If either of these two conditions are present, the body is being damaged with every grain of gluten consumed. Not a very wise way to test for anything.

I do believe that people who suspect this disease should make every effort to establish whether or not they actually do have it. Celiac and gluten sensitivity are genetic disorders - if you have it then some family members (some of them still children) will have it to. In all fairnes to these family members you need a yes or no. The Kimball Lab genetic test (swab) is covered by most insurances if a doctor orders the test for you. This will tell you whether or not you could have celiac - not whether or not you do. However if the test is negative then celiac is off the table - no longer a possibility to consider. A process of elimination is often the only way you get to a final diagnosis.

I am on that tiresome road myself right now. I wish it were easier, less time consuming, less frustrating but it isn't. Even one of my daugher's suggested today that maybe I should just give up the hassle - what difference does it make anyway? - most people wouldn't bother. She may one day be glad I bothered.

One more thing. Not having Celiac doesn't mean gluten is okay. Gluten free diets are being prescibred for many with autoimmune diseases and certainly is strongly recommended for anyone with a neurological disease. Claire

[Wandering Hermit]

Hermit, I was wondering if you have cut out dairy altogether from your diet, or just lactose, and still eat low-lactose dairy products?

<{POST_SNAPBACK}>

I just eat low lactose. Have not tried total elimination of dairy, that is possibly a future experiment.

I appreciate everyone's comments and concern. I understand that there may possibly be other issues with gluten beyond celiac disease. I also understand that I am taking a risk with the challenge, in the sense that there is some probability that I am doing damage to my body right now. This is not something I did on a spur of the moment, I understand the gamble, and I am willing to take it. I did not do this on my own, I have been working with a gastro before even considering it. And if my response to the diet or my initial diagnosis had any clarity at all, I would not be doing this.

But I am simply unwilling to walk around the rest of my life not having a clue as to whether or not I have this serious, serious disease.