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Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do You Choose Which Specialist To Visit?


em80

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Lady Eowyn Apprentice

I have not managed to eat out anywhere yet and not feel glutened the next day.

Our local Italian restaurant does gluten free people in a special pan ( :) ) reserved for gluten free and I have salad (olive oil only) but it still gets me every time :( .

I think there is just too much gluten going on in most kitchens and of course, flour in the air, etc must tend to get everywhere. Realistically, a busy commercial kitchen is not likely to have sensitive cc issues under complete control!

 

As for laundry detergent - a couple of years ago I changed ours from a general one (various makes) to a environmentally friendly, no harsh chemicals, etc one and am certain I can tell a difference, especially with underwear and bedding - it's just different and makes your body more at ease  :ph34r:  no kidding!! Not suggesting this is anything to do with gluten, but on a chemical front - it makes you think.

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Lady Eowyn Apprentice

Just to apologise ...

I thought that I was responding at the bottom of page 1 - so now I look completely off topic.

I think I'm losing the plot today :blink: .

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designerstubble Enthusiast

To get your guts to play nicely you have to treat them nicely. High quality probiotics; digestive enzymes; L-glutamine, all will help them out, to repopulate your gut with the good guys, to digest your food, and to promote healing. (Providing you have killed off your SIBO :ph34r: )

Thanks. What constitutes a high quality probio? I am taking one but have no idea if its good or not?! Also what kind of food repopulates good bacteria? I once heard that green juices are good start? Though cant find any info on that! Will look into the digestive enzymes too.

I have no idea if I need any of this! All I know is that my 'movements' are still not right all the time, and my gi seems to make too much noise sometimes! I am eating a lot of veg though so who knows! I almost wish they could take another look inside to tell me if I am on track or not. Ugh. So frustrating.

Thanks though

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designerstubble Enthusiast

I have not managed to eat out anywhere yet and not feel glutened the next day.

Our local Italian restaurant does gluten free people in a special pan ( :) ) reserved for gluten free and I have salad (olive oil only) but it still gets me every time :( .

I think there is just too much gluten going on in most kitchens and of course, flour in the air, etc must tend to get everywhere. Realistically, a busy commercial kitchen is not likely to have sensitive cc issues under complete control!

As for laundry detergent - a couple of years ago I changed ours from a general one (various makes) to a environmentally friendly, no harsh chemicals, etc one and am certain I can tell a difference, especially with underwear and bedding - it's just different and makes your body more at ease :ph34r: no kidding!! Not suggesting this is anything to do with gluten, but on a chemical front - it makes you think.

I have not eaten out once yet. In 5 months. I'm far too scared. The UK are too behind the times with celiac for me to trust. I don't even trust celiac UK website much for their info... Very basic.

Interesting about the bed sheets. And laundry... Might give that a go... I am becoming hateful of chemicals these days and anything 'manufactured'!

Hmmmm you know, I am wondering if a baked potato might be safe for me to eat out? I could leave the skin maybe? Anyway, I'm rambling off on one now!!

:D

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designerstubble Enthusiast

Just to apologise ...

I thought that I was responding at the bottom of page 1 - so now I look completely off topic.

I think I'm losing the plot today :blink: .

!! Glad I'm not the only one who does stuff like that ;)
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Bubba's Mom Enthusiast

Thanks. What constitutes a high quality probio? I am taking one but have no idea if its good or not?! Also what kind of food repopulates good bacteria? I once heard that green juices are good start? Though cant find any info on that! Will look into the digestive enzymes too.

I have no idea if I need any of this! All I know is that my 'movements' are still not right all the time, and my gi seems to make too much noise sometimes! I am eating a lot of veg though so who knows! I almost wish they could take another look inside to tell me if I am on track or not. Ugh. So frustrating.

Thanks though

I think a lot of the probiotics are the same?  I was told at the Mayo Clinic to take one that contains lactobacilus acudophilos to keep yeast in check.  Other than that, I'd say switch brands from time to time to get a balance of various strains.  Some contain soy or dairy and I wouldn't recommend those. 

 

Probiotic foods include those foods that are fermented.  Kombucha tea, sour kraut, kimchee, keffir, Greek style yogurts that aren't full of sugar (if you tolerate dairy).

 

Green juices help replenish your digestive enzymes.  They might help if it seems like you are digesting things well.  If you are still having issues, I wouldn't overdo the fibrous veggies.  Be sure that they agree with you.  When healing some foods can irritate your system.

 

If you are having growly noises in your tummy it usually means your system is struggling with digesting..usually carbs.  A digestive enzyme supplement can really help.  I wouldn't take it with absolutely everything you eat, but if you are eating beans, peas, fatty foods, fibrous foods, they'd be a lot of help.

 

Healing can be a slow process.  We stop eating gluten and think we are magically going to feel great.  The truth is..it takes some time.  You will have "up" days and "down" days.  Keep a food/symptom log and if something doesn't agree with you, omit it, or limit it for a while. If you have a set-back, tell yourself these things happen, and try to do better. :unsure:

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designerstubble Enthusiast

I think a lot of the probiotics are the same? I was told at the Mayo Clinic to take one that contains lactobacilus acudophilos to keep yeast in check. Other than that, I'd say switch brands from time to time to get a balance of various strains. Some contain soy or dairy and I wouldn't recommend those.

Probiotic foods include those foods that are fermented. Kombucha tea, sour kraut, kimchee, keffir, Greek style yogurts that aren't full of sugar (if you tolerate dairy).

Green juices help replenish your digestive enzymes. They might help if it seems like you are digesting things well. If you are still having issues, I wouldn't overdo the fibrous veggies. Be sure that they agree with you. When healing some foods can irritate your system.

If you are having growly noises in your tummy it usually means your system is struggling with digesting..usually carbs. A digestive enzyme supplement can really help. I wouldn't take it with absolutely everything you eat, but if you are eating beans, peas, fatty foods, fibrous foods, they'd be a lot of help.

Healing can be a slow process. We stop eating gluten and think we are magically going to feel great. The truth is..it takes some time. You will have "up" days and "down" days. Keep a food/symptom log and if something doesn't agree with you, omit it, or limit it for a while. If you have a set-back, tell yourself these things happen, and try to do better. :unsure:

Thanks bubbasmom, that was really useful info. I will look for a probio containing that. I don't think mine does. I will start my food diary again. I stopped it a few weeks ago as I was kinda told not to bother (ie. I was being premature keeping one) but with hindsight it did help. In 4 months it helped me figure out some of my allergies and intolerances. Albeit now I'm stuck on a very restricted diet :( but! Onwards and upwards. Advice and help greatly appreciated :) you guys rock... Thanks

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Bubba's Mom Enthusiast

Thanks bubbasmom, that was really useful info. I will look for a probio containing that. I don't think mine does. I will start my food diary again. I stopped it a few weeks ago as I was kinda told not to bother (ie. I was being premature keeping one) but with hindsight it did help. In 4 months it helped me figure out some of my allergies and intolerances. Albeit now I'm stuck on a very restricted diet :( but! Onwards and upwards. Advice and help greatly appreciated :) you guys rock... Thanks

I was first DXed in July 2011.  I started keeping a food log when going gluten-free didn't stop a lot of my weird symptoms and just kept it up out of habit.  It's really helpful in figuring out some of the odd intolerances.  Just last week I made split pea soup and found I was very depressed the day after I ate it.  Skipped a couple of days and had it for lunch and got the same symptoms.  While not life threatening or anything, it was interesting to make the connection.  Without the log I don't think I would have made the connection?

 

I totally get how hard it is to live on a resticted diet.  I basically eat Paleo, except I can't have eggs now (because the winter feed has soy and it comes through to the egg) or any dairy.  I limit tomatoes and peppers because I know they can be irritating to my system.

 

Oh well...it won't be forever?  We'll get ourselves healed and straightened out and then we can start adding things back! :D

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    • shadycharacter
      Fermentation breaks down some of the gluten in wheat. Nowhere enough for a wheat dough to become gluten free, but the gluten may be significantly reduced. I think some pizzerias make the dough the day before and leave it overnight. The longer the microbes are acting on the flour, the better.
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      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
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