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Extra Diet Restrictions For Healing?


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#16 lizard00

 
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Posted 01 April 2012 - 07:06 PM

Thanks Lizard...I looked at the diet online, and it's pretty similar to the Gap's diet which I am trying. Maybe a little more restrictive though. How long did it take on the whole 30 for you to feel better? And do you feel good? Or just better?

Shroom and di...thanks for the input...I am only eating the grass-fed beef and non-farmed salmon...haven't found any chicken I feel confident in.


It took me about a week or 10 days, but then I went out to eat and even though I ordered specifically, and our server was also gluten-free, I ended up feeling pretty nasty for a few days. After that, I finally started feeling good. So maybe 15 days, which I attribute partially to the debaucle at the restaurant. Yesterday I made pizza for dinner and drank beer with it... today's been pretty rough. Lesson learned. But honestly, I finished the 30 on Friday and I felt great. I've eaten that way all today (I did have some potatoes) and plan on eating that way most of the time. Huge difference!

Hope you can figure it all out! I know how incredibly frustrating it can be.
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Be yourself, everyone else is taken.
Oscar Wilde

Gluten free November 2007
IgA Deficient, Neg Bloodwork, Double DQ2 Positive
Dietary and Genetic Diagnosis June 2, 2008
Soy free Jan 09

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#17 carolynmay

 
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Posted 02 April 2012 - 10:55 AM

Hi there,

I was in a similar situation to you. I had "complete villous atrophy" on diagnosis and after 5 years of the normal gluten free diet, things had healed only very slightly. I was pretty much at my wits' end, especially when a bone scan came back showing osteopenia (aged 35) when I had used to be a junior internationl track and field athlete.

At that point I decided to try anything. So I basically followed the Specific Carbohydrate Diet but without dairy, as I know I am intolerant to dairy - probably casein, not lactose.

I did it for about a year, and eased off slightly at the end to stay as just grain free, dairy free and soya free. I then had a follow-up endoscopy and things had healed to almost normal (and boy, am I grateful, and hope it lasts).

So I really do think the SCD can help when nothing else is. Note too that I didn't take any probiotics, nor fermented foods, as I don't react well to either (although am starting to be able to tolerate them better now I think). I simply ate meat, fish, vegetables, fruit, nuts and seeds, although with no starchy veg at least for about 8 months. To help make it more bearable, as I am someone who needs carbs or feels terrible, I found the wonderful chestnut, as well as rutabaga and celeriac.

Feel free to email me if you wanted to ask anything about this. You will get there - it's just a case of trying so many different things I think. I also think this is not a diet to do forever as I think I am a tad salicylate intolerant now through sheer overdosing, but I think for a while it could serve a purpose.

Best wishes, Carolyn
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#18 carolynmay

 
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Posted 02 April 2012 - 11:00 AM

Hi there,

I was in a similar situation to you. I had "complete villous atrophy" on diagnosis and after 5 years of the normal gluten free diet, things had healed only very slightly. I was pretty much at my wits' end, especially when a bone scan came back showing osteopenia (aged 35) when I had used to be a junior internationl track and field athlete.

At that point I decided to try anything. So I basically followed the Specific Carbohydrate Diet but without dairy, as I know I am intolerant to dairy - probably casein, not lactose.

I did it for about a year, and eased off slightly at the end to stay as just grain free, dairy free and soya free. I then had a follow-up endoscopy and things had healed to almost normal (and boy, am I grateful, and hope it lasts).

So I really do think the SCD can help when nothing else is. Note too that I didn't take any probiotics, nor fermented foods, as I don't react well to either (although am starting to be able to tolerate them better now I think). I simply ate meat, fish, vegetables, fruit, nuts and seeds, although with no starchy veg at least for about 8 months. To help make it more bearable, as I am someone who needs carbs or feels terrible, I found the wonderful chestnut, as well as rutabaga and celeriac.

Feel free to email me if you wanted to ask anything about this. You will get there - it's just a case of trying so many different things I think. I also think this is not a diet to do forever as I think I am a tad salicylate intolerant now through sheer overdosing, but I think for a while it could serve a purpose.

Best wishes, Carolyn



p.s. - I ate grain fed meat all the way through this period, ie chicken, duck, turkey etc. I kind of figured that by the time you reach the muscle of an animal the grain has hopefully been thoroughly digested and reconstituted. I would not eat offal from grain fed birds, as I'm not so sure about that. I also now don't risk going anywhere near the skin, where I suppose it is possible grain feed may stick to the surface from the birds' environments. Plus I don't eat farm-fed fish as I know they are fed grain and soya, so this will all float around in the water and may cross contaminate I suspect. Good luck!
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#19 Baddfrog

 
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Posted 02 April 2012 - 06:15 PM

Thanks Lizard and Carolyn.

Carolyn, I'm glad to see a that your had villous healing on the diet! How long did it take before you started to feel the benefit of the SCD?
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#20 Di2011

 
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Posted 03 April 2012 - 02:14 AM

Hi there,

I was in a similar situation to you. I had "complete villous atrophy" on diagnosis and after 5 years of the normal gluten free diet, things had healed only very slightly. I was pretty much at my wits' end, especially when a bone scan came back showing osteopenia (aged 35) when I had used to be a junior internationl track and field athlete.

At that point I decided to try anything. So I basically followed the Specific Carbohydrate Diet but without dairy, as I know I am intolerant to dairy - probably casein, not lactose.

I did it for about a year, and eased off slightly at the end to stay as just grain free, dairy free and soya free. I then had a follow-up endoscopy and things had healed to almost normal (and boy, am I grateful, and hope it lasts).

So I really do think the SCD can help when nothing else is. Note too that I didn't take any probiotics, nor fermented foods, as I don't react well to either (although am starting to be able to tolerate them better now I think). I simply ate meat, fish, vegetables, fruit, nuts and seeds, although with no starchy veg at least for about 8 months. To help make it more bearable, as I am someone who needs carbs or feels terrible, I found the wonderful chestnut, as well as rutabaga and celeriac.

Feel free to email me if you wanted to ask anything about this. You will get there - it's just a case of trying so many different things I think. I also think this is not a diet to do forever as I think I am a tad salicylate intolerant now through sheer overdosing, but I think for a while it could serve a purpose.

Best wishes, Carolyn

Hi Carolyn,
There are many of us more recent forum members that would be grateful for you ideas and experience. Please, please stick with your forum watching for a while.
I seem to have a problem with sals (especially dried fruit, spices etc) and mushrooms which I have tried for months to keep in my diet without success :(
Can you stick around for a while and help us out?
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#21 carolynmay

 
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Posted 03 April 2012 - 10:46 AM

Hi there - yes of course. In my opinion this oh so unenviable journey is all about helping others if possible - I have been tremendously grateful for some of the incredible advice in the past from this board and also the UK forum (I am based in the UK). Indeed it was reading on this board about someone who had only started to heal on going entirely grain-free that made me look into the whole thing.

I'm sure that not everyone needs to be as severe, but I just took the attitude that going gluten and dairy free was clearly not working for me from my TTG and endoscopy results, so I had to try something else. What I'm not sure about to this day is whether the SCD worked for me because of the reasons they suggest - ie. reduction in bacterial overgrowth, or whether for celiacs it is simply because you cut out any possible risk of cross contamination through cutting out all the grains and processed foods. I do eat starchy vegetables now - ie yams, sweet potatoes, parsnips, rutabaga, celeriac, beetroot etc, and as far as I can tell I don't have a problem with them, I don't think.

I don't eat potatoes as they are one of the so-called "cross reactive" gluten foods. I have no idea if the science behind that is sound or not but have just taken the attitude for now that I'd rather err on the side of caution, so can easily live without potatoes and the various others on the list if it means I can be healthy going forwards.

Re salicylates and amines, I tend to try to follow some of the principles of the Failsafe diet, so stick to the safer fruit and veg on the list, along with meat, fish, nuts and seeds. Be careful about olive oil and coconut oil - which are of course supposed to be incredibly healthy, but they are both very high in salicylates. Oddly enough goose fat / duck fat may be better in moderation for those who are not so great with salicylates - or otherwise sunflower oil.

Something I read recently suggested that fish oil can help to reduce salicyalte sensitivity, but again I don't know if there is any evidence for this.

It is all DESPERATELY boring!!!!!! But I do feel better and may gradually start to try introducing different things, although the diet is now very "liveable" with.

Re how long it took to feel a difference, I would say a month from departing from traditional gluten free. At that point I was still eating starchy veg too though - had just gone grain free, so maybe that could be a first step to try, without going the whole hog of the SCD.

My email is carolynalmay@hotmail.com if I can be of any help to anyone. I would add that I absolutely don't profess to know what will work for different people, and can only tell you what I have found of course!

Best wishes to all,

Carolyn
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#22 dilettantesteph

 
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Posted 04 April 2012 - 04:22 AM

I had extensive damage when I was diagnosed. Basically, I had been pooping in my pants for 20 years. My mood swings were out of control and the depression kept me in bed for days at a time. The joint pain and fatigue were debilitating. I hadn't been able to work for years and I wasn't pulling my weight as a "housewife" either.

Now, I am working again and no damage is detectable.

I found that anything that has passed through someone else's hands is suspect. I am trying to grow everything myself, but I haven't gotten terribly far with that yet. Everything else I do careful elimination/challenge diets on. I especially avoid processed gluten free grain products. I definitely avoid things from shared facilities.

I also have problems with oats, but so far I haven't been able to identify any other allergens. I had problems with tomatoes from the store, but was able to grow my own and eat them fine. I e-mailed the tomato people and they were grown hydroponically with no coatings or anything else that should bother me, they said. I don't know what it could have been. That story has repeated itself many times.

I can only speculate on what might be causing the problems.

I have been gluten free for almost 5 years now.
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