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"Super Sensitive" Celiacs.....


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#46 MaryJones2

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Posted 15 January 2009 - 08:28 PM

We must be Celiac soulmates :D


I think so. I don't do coconut either so that solidifies our soulmateness! I'm not sure I have a comment on the Bojangles story other than I like to say Bojangles.
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#47 Gentleheart

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Posted 15 January 2009 - 10:11 PM

So far I've only tried the name brand Natural Sunbutter by Sun Gold foods .. it says gluten-free on the label. I've been ok with it .. This is my 4th jar in the last 2 months ...



Sun Gold makes several versions of Sunbutter. One of them is called Organic Sunbutter and is just plain gound, roasted sunflower seeds. No salt, cane sugar, no nothing. It does say gluten free as well. The only downside is that is says it is made in a factory that also processes soybeans.

I was just wondering if anyone knew if it was gluten free enough for super sensitive people. I seemed to do OK with it, but it's hard for me to tell sometimes. The reason I brought it up here, is that I haven't had peanut butter for over 3 years now. So maybe I don't remember exactly what it tastes like. But I sure think this particular Sunbutter is a dead ringer for the peanut butter I remember. I just thought that maybe those of you who REALLY miss peanut butter might like to try it. I found it very satisfying.
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#48 jerseyangel

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Posted 16 January 2009 - 06:30 AM

Sun Gold makes several versions of Sunbutter. One of them is called Organic Sunbutter and is just plain gound, roasted sunflower seeds. No salt, cane sugar, no nothing. It does say gluten free as well. The only downside is that is says it is made in a factory that also processes soybeans.

I was just wondering if anyone knew if it was gluten free enough for super sensitive people. I seemed to do OK with it, but it's hard for me to tell sometimes. The reason I brought it up here, is that I haven't had peanut butter for over 3 years now. So maybe I don't remember exactly what it tastes like. But I sure think this particular Sunbutter is a dead ringer for the peanut butter I remember. I just thought that maybe those of you who REALLY miss peanut butter might like to try it. I found it very satisfying.

I have a jar of the Sun Gold Sunbutter in my fridge. It's only ingredient is roasted sunflower seeds, and it's marked gluten-free on the front.

I like to dip my Ener-g Wilde Pretzels in it, and I've found that I seem to be ok with it, but not every day. I don't know if it's a build-up of soy that catches up with me or what.

It is very good tasting--and pretty close to peanut butter, but for everyday I stick to almond butter. At first the almond butter tasted bland compared to peanut, but now I love it.
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Patti


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#49 JNBunnie1

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Posted 16 January 2009 - 09:14 AM

I'm just speaking for my self here, but this includes topical products. I love to try new things, having still not found the perfect hair products :lol: .....kind of a never-ending quest which is made all the harder having to worry about gluten. I also need to avoid tocopherals and vitamin E in products unless I'm able to find out where they were sourced. That is very hard to find out, as most companies will gladly tell you if they add "gluten", but they have no idea where the E comes from.

I have to agree with everyone about the peanuts! I have developed a liking for almond butter, but I still crave peanut butter.



I have to be super careful with topicals too. A lot of people try to claim it's perfectly safe, but obviously its not for some of us.

Do try the sunbutter, I think it's delicious. I intend to use it to try and make peanut butter swirl chocolate ice cream.
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#50 Gentleheart

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Posted 16 January 2009 - 10:37 AM

I have a jar of the Sun Gold Sunbutter in my fridge. It's only ingredient is roasted sunflower seeds, and it's marked gluten-free on the front.

I like to dip my Ener-g Wilde Pretzels in it, and I've found that I seem to be ok with it, but not every day. I don't know if it's a build-up of soy that catches up with me or what.

It is very good tasting--and pretty close to peanut butter, but for everyday I stick to almond butter. At first the almond butter tasted bland compared to peanut, but now I love it.


Thanks for the report. If you can have it, I probably can too. I am unfortunately allergic to almonds. So cashew butter is about it. I don't know any specific cashew butter that I know to to be OK, so I just do without. From what you said, I might feel a little better about continuing occasionally with the sunflower butter now. I also have a soy problem, so I will try to rotate it. :)
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#51 jerseyangel

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Posted 16 January 2009 - 10:39 AM

Thanks for the report. If you can have it, I probably can too. I am unfortunately allergic to almonds. So cashew butter is about it. I don't know any cashew butter that I now trust to be OK, so I just do without. I might feel a little better about continuing occasionally with the sunflower butter now. I also have a soy problem, so I will try to rotate it. :)

That sounds like a good plan :)
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#52 lizard00

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Posted 16 January 2009 - 07:56 PM

I'm a super sensitive celiac too. It really sucks ... I'm fairly certain I'm reacting to Bob's Red Mill oatmeal now. Of course I ate it for 4 days straight so that didn't help. <_<


I just wanted to pass on what the dietician at the support group I visited last night said regarding oatmeal. Take it for what it's worth, it may or may be true for you.

She said that even with gluten-free oats, most celiacs can only tolerate between 1/4 to 1/2 cup at a time because of the protein found in oats. That while it is safe, it's still hard for us to digest, and in her experience she has not seen celiacs able to eat more than that without difficulty.
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#53 mushroom

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Posted 16 January 2009 - 08:14 PM

She said that even with gluten-free oats, most celiacs can only tolerate between 1/4 to 1/2 cup at a time because of the protein found in oats. That while it is safe, it's still hard for us to digest, and in her experience she has not seen celiacs able to eat more than that without difficulty.

That's interesting. Oats were the first thing I ever reacted to. Way back in high school I was made to eat oatmeal porridge for breakfast and would end up in the loo sometime during the morning doubled over with cramps.
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#54 rinne

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Posted 17 January 2009 - 12:59 AM

That's interesting, I could never eat oatmeal, it made me gag. I always thought it was because of the lumps, hate lumps. :lol:
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#55 marciab

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Posted 17 January 2009 - 03:02 AM

The oats went down really well. They gave me a full calm feeling in my stomach that I'm not getting from the other foods I'm eating. I'm mostly Paleo so I'm mostly eating meats, fruits and veggies.

I know I overdid it though ... I've always like the taste of oatmeal.

Good tip on the Sunbutter. I have soy issues too but forgot about it when I was eating this.
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Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

#56 jerseyangel

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Posted 17 January 2009 - 05:23 AM

I bought a box of Cream Hill Estates Oatmeal weeks ago and have just been afraid to try it. (I was feeling optimistic in the store, I guess!)

I used to love oatmeal, but did notice that I was in the bathroom more on the days I ate it. I keep wondering if I've healed enought to handle it......but what Liz's dietitian said makes sense to me too. I have problems with so many of the plant proteins.

I think my husband may inherit my "pure" oats :rolleyes:
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#57 MaryJones2

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Posted 17 January 2009 - 08:37 AM

Does anyone know of a large scale study for oat tolerance? Or how the only 10% react phrase came about? Most of the studies I've read are rather small (10, 39, etc. people) and seem to have a more than 10% dropout rate due to adverse reactions. I've been wondering about this for some time and thought I would ask.
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#58 marciab

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Posted 17 January 2009 - 08:47 AM

It could be the fiber in the oats too. I have a few freinds who use oats as a laxative. Flax meal is good for this too.

I started on the oats because I wanted to make oatmeal choc chip cookies for a celiac mtg. I used Bob's choc chip cookie mix and this and it turned our really well .. be sure to add some water too. I used 6 tblsp ...

Then I just got carried away.
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Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

#59 flourgirl

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Posted 17 January 2009 - 01:06 PM

I've always disliked oatmeal. I thought it was because we had to sit at the table until we ate it as kids. Nothing worse than cold, solidified oatmeal.... I DID like oatmeal cookies, though!

I tried oatmeal just once since my diagnosis. Can't do it. Oh well.
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#60 lizard00

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Posted 17 January 2009 - 02:37 PM

Well, it certainly made me wonder if I reacted to the oats themselves, or if they were contaminated, as I suspected at first. At any rate, I used them all and doubt I will buy more.
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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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