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"Super Sensitive" Celiacs.....


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#16 lizard00

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Posted 15 January 2009 - 08:01 AM

It's so discouraging when we hurt, and nothing shows up in the tests


That is probably the most frustrating this for me. I know that I just don't feel right. They have tested me for all sorts of things, and everything comes back within range. Although when they tested me for vitamin D it came back "low normal" so she suggested I take a supplement. At least she doesn't think I'm crazy. :huh:

The irony is that for me, when I get glutened, I don't get D. If anything, I'm more likely to suffer from C. That really blew my doc away. My symptoms linger for somewhere around 8-10 days. I get a ferocious headache that thankfully lasts only a day, then I get what we have coined "the burn". Everything I eat hurts, doesn't matter what it is. So, I eat enough to make the hunger pain go away. That lasts for a few days, then I get reflux for a few days. Finally that wears off, but I'm tired for a few days.

All that from like an invisible crumb...
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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 jerseyangel

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Posted 15 January 2009 - 08:09 AM

All that from like an invisible crumb...

It really is mind-boggling, isn't it? What a miniscule amount of this substance can do to a human being.......
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#18 lizard00

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Posted 15 January 2009 - 08:16 AM

It really is mind-boggling, isn't it? What a miniscule amount of this substance can do to a human being.......


Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.
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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

#19 JNBunnie1

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Posted 15 January 2009 - 10:07 AM

Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.

"Oh, just a little bit can't hurt."

That's my favorite, because it so clearly shows the ignorance and typically unfeeling nature of people. That's why I love my boyfriend. He's so careful with me. We have to be super-uptight, and only eat at restaurants that offer actualy gluten free products, like roll sor something. The ones that just have a lame menu with meat on it aren't ok usually, but PF Chang's and Outback have been pretty reliable.

I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.
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If you're going through hell, keep going. ~Winston Churchill

#20 marciab

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Posted 15 January 2009 - 10:55 AM

I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.


Have you tried Sunbutter ? It's made from sunflower seeds and it's better than peanut butter ..

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 don't get "D" either. At least not anymore. I had it all the time before going gluten-free but not since. I mostly get rock hard "C". TMI ... lol ...

I almost forgot ... Have you all looked at treating leaky gut ?
  • 0
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.

#21 Gentleheart

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Posted 15 January 2009 - 11:02 AM

The plain unsweetened organic version of sunbutter is delicious. Is it securely gluten free? I do know it's made in a factory with soy. But has anyone investigated it?
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#22 marciab

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Posted 15 January 2009 - 11:10 AM

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 ...

I forgot .. here's the leaky gut article I've been looking at ...

http://mdheal.org/leakygut.htm
  • 0
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.

#23 lizard00

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Posted 15 January 2009 - 11:46 AM

I'm fairly certain I'm reacting to Bob's Red Mill oatmeal now.


I had a reaction to it too. It's not hard to avoid since I'm not a big oatmeal fan, but I liked to put it in stuff.
  • 0
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

#24 MaryJones2

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Posted 15 January 2009 - 12:06 PM

That is probably the most frustrating this for me. I know that I just don't feel right. They have tested me for all sorts of things, and everything comes back within range. Although when they tested me for vitamin D it came back "low normal" so she suggested I take a supplement. At least she doesn't think I'm crazy. :huh:

The irony is that for me, when I get glutened, I don't get D. If anything, I'm more likely to suffer from C. That really blew my doc away. My symptoms linger for somewhere around 8-10 days. I get a ferocious headache that thankfully lasts only a day, then I get what we have coined "the burn". Everything I eat hurts, doesn't matter what it is. So, I eat enough to make the hunger pain go away. That lasts for a few days, then I get reflux for a few days. Finally that wears off, but I'm tired for a few days.

All that from like an invisible crumb...


This is a lot of what happens to me. I am generally unable to function for 7-10 days and tend not to remember much about the week. It's a lost week. Then I'm yucky for 2-3 more weeks. During these times everything that goes in my mouth bothers me. I also have terrible joint pains, insomnia, migranes, skin problems, etc. I have PCOS too and I swear every time I get glutened I develop a cyst. I too have been tested for everything under the sun and not much is out of whack. I'm just "too healthy to be this sick."
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#25 marciab

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Posted 15 January 2009 - 12:06 PM

That was the certified gluten free one too ... I woke up with myoclonus in my hand this morning and I know it's been at least 2 years since I've done that ... It could always be a problem with oats too. I love 'em and couldn't wait to try these. Maybe my body started creating antibodies to oats proir to going gluten free since I was eating so much of them ...
  • 0
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.

#26 MaryJones2

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Posted 15 January 2009 - 12:08 PM

I don't do well with Bob's products in general. I can't do oats at all. It's a real shame because I love them so.
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#27 marciab

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Posted 15 January 2009 - 12:19 PM

This is a lot of what happens to me. I am generally unable to function for 7-10 days and tend not to remember much about the week. It's a lost week. Then I'm yucky for 2-3 more weeks. During these times everything that goes in my mouth bothers me. I also have terrible joint pains, insomnia, migranes, skin problems, etc. I have PCOS too and I swear every time I get glutened I develop a cyst. I too have been tested for everything under the sun and not much is out of whack. I'm just "too healthy to be this sick."


Sorry to hear you're having such a tough time. I was doing this for the first 2 - 3 years but now I'm recovering quicker now. I was told it's probably because my nutrient levels are have built back up .. which is true ... my labs show this. Have you had your nutrient levels tested ?

And have you tried DPP-IV ? I've heard a lot of people say that it's helped them with CC. And there is research that states taking a digestive enzyme on an empty stomach can eliminate undigested proteins in our bodies. So, I usually take it for a day or so afterwards too ...
  • 0
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.

#28 num1habsfan

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Posted 15 January 2009 - 12:26 PM

"Oh, just a little bit can't hurt."


Yup, definitely the most common line out there!! I laugh at people when they ask that.
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#29 kbtoyssni

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Posted 15 January 2009 - 12:27 PM

I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.


Peanuts were so much harder for me than gluten, too! All my favorite candy had peanuts, and I spent a good week thinking about "what if I just have a little bit of peanut once a month or so..." It does seem silly because peanuts are so much easier to avoid than gluten.
  • 0
Gluten-Free since September 15, 2005.
Peanut-Free since July 2006.

#30 MaryJones2

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Posted 15 January 2009 - 12:57 PM

Sorry to hear you're having such a tough time. I was doing this for the first 2 - 3 years but now I'm recovering quicker now. I was told it's probably because my nutrient levels are have built back up .. which is true ... my labs show this. Have you had your nutrient levels tested ?

And have you tried DPP-IV ? I've heard a lot of people say that it's helped them with CC. And there is research that states taking a digestive enzyme on an empty stomach can eliminate undigested proteins in our bodies. So, I usually take it for a day or so afterwards too ...


It's difficult sometimes but I found a groove about a year ago and am generally healthy now provided I stay away from the smallest amounts of gluten. Initially I was tempted to try new gluten-free things and trust people who really had no clue how to prepare food and was getting glutened every few months or so so I don't think I was fully healing. I did this off and on for about 18 months. I was getting better every day but was always frustrated with the setbacks. Once I stopped taking chances I started really improving but it still took another 12 or so months.

I had a lot of nutritional deficiences when I was diagnosed and everything is normal now.
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