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"Super Sensitive" Celiacs.....


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#1 jerseyangel

 
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Posted 14 January 2009 - 01:58 PM

I was thinking it would be nice to have a thread where we can kick ideas around that work for us, as well as share our frustrations with others who understand.

My original thread on the subject was inadvertantly lost, but there was so much interest that I'd like to try again. :D

After being gluten-free for a good three and a half years, I find myself just as sensitive--if not more--than I was when I started. My reactions have gotten less severe, but they tend to drag on a lot longer. One thing that has improved greatly is the anxiety. Before I was diagnosed, I had full on panic attacks. I've not had a panic attack since going on the diet, and the near-crippling anxiety is all but gone after taking about 18 months to begin to improve.

I still can't tolerate things made on shared equipment with gluten, and so many of the products that are tolerated well by other Celiacs cause me to react. I had a real problem dealing with this for a long time, obsessing on trying to figure out "why?".

I think I have finally arrived at a place where I accept things the way they are--that this is me. I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong. Could be, I'll never really know.
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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

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#2 ravenwoodglass

 
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Posted 14 January 2009 - 03:27 PM

I still can't tolerate things made on shared equipment with gluten, and so many of the products that are tolerated well by other Celiacs cause me to react. I had a real problem dealing with this for a long time, obsessing on trying to figure out "why?".

I think I have finally arrived at a place where I accept things the way they are--that this is me. I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong. Could be, I'll never really know.


Me too. I actually came to the same conclusion you did, that it was the extreme length of time that I was ill that contributed to my high sensitivity. My other family members have done a lot better at being able to do shared equipment foods and restaurants and it is hard sometimes not to feel jealous and well...isolated. But then I also realize that they were no where near as ill as I was before being diagnosed.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 lizard00

 
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Posted 14 January 2009 - 03:37 PM

Thanks for recreating the thread Patti :D

From what I remember of my post in the first thread: I know that as time as gone by, I've gotten more sensitive. When I first went gluten-free, I was so thankful that I wasn't like so many here who are sensitive and have other intolerances...

HAHAHA the jokes on me! <_<

I think I finally had to accept it, too, that I was waaayy more sensitive than I thought I was. But for awhile I couldn't figure out why I would have "the burn" when I was soo sure that I hadn't had gluten. But I am realizing now that it was trace amounts. I think I wanted to believe that I could use the shortcuts like others, but I'm pretty much making everything from scratch these days.

On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? I've known for a while that I can't handle soy because every time I cook with earth balance, it made me feel gross. I also have found that I can tolerate limited amounts of grains at one time.

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.
  • 2
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

#4 Jestgar

 
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Posted 14 January 2009 - 03:41 PM

I can do small amounts of soy oil (like soy lecithin in salad dressing) but any protein at all and I'm toast. Corn I can eat ~1 tortilla every couple weeks. I use this up also in salad dressing that has corn syrup.

Dairy I do fine with :)

Most of what I eat I make.
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#5 ravenwoodglass

 
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Posted 14 January 2009 - 04:51 PM

How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things?


Count me in for the dairy and soy. I seemed okay with soy for a while but think I really overdid it after I went gluten free. Not being able to have soy does make it tougher. It seems to be in so many gluten-free foods.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 MaryJones2

 
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Posted 14 January 2009 - 06:10 PM

Wow. I can't believe how alike we all are. I haven't done dairy or soy in 3 years. I am learning, slowly, that corn is a problem too. It's so nice to know that I'm not alone.
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#7 jerseyangel

 
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Posted 14 January 2009 - 06:31 PM

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.

I used to eat everything, too. Of course, I was often sick, but back then I never considered it might be something I was eating. It seems almost unbelieveable now, but the thought never occured to me.

I felt fine on the gluten-free diet for the first few months, but then my GI symptoms came back--worse than before. I had urgent D that kept me in the house most of the time. It would hit, and I'd have literally about 10 seconds to get to the bathroom......

Through process of elimination, I found that soy did this to me. I was already dairy free at this point, since my gastro had told me to go lactose free when I was diagnosed. In the months to come, I found that I was intolerant to corn, eggs, tapioca, and coconut. The final piece of the puzzle was legumes. Now, if I eat them I get horribly nauseous.

Luckily, after completely avoiding them for well over a year, I now can eat corn-- and eggs if they're in a recipe (not alone, like scrambled eggs).

Tapioca dries my mouth out the second I start chewing it and upsets my stomach. That's a real pain since it's in so many gluten-free mixes and things. Coconut isn't hard to avoid, which is good. :)
  • 1
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

#8 lizard00

 
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Posted 14 January 2009 - 06:42 PM

I wonder if being a super sensitive celiac makes you more susceptible to other food sensitivities?

On a side note, my GI told me that with something like celiac that causes such damage to your gut, the chance of being completely normal afterwards is slim to none. He told me is was "damaged". LOL :lol: Sometimes I wonder too about genetics, and if certain genetic coding predisposes one to be more sensitive to gluten and other substances.
  • 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

#9 jerseyangel

 
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Posted 14 January 2009 - 06:49 PM

On a side note, my GI told me that with something like celiac that causes such damage to your gut, the chances of being completely normal afterwards is slim to none. He told me is was "damaged".

I believe it.
  • 0
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

#10 ive

 
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Posted 14 January 2009 - 11:30 PM

Thanks for recreating the thread Patti :D

How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? I've known for a while that I can't handle soy because every time I cook with earth balance, it made me feel gross. I also have found that I can tolerate limited amounts of grains at one time.

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.


I am too intolerant to gluten, dairy, soy and corn. My other sensitivities are not as bad, meaning that I can handle limited amount of nuts / legumes, e.g. on holidays.

But it would make my life so much easier if I would be just intolerant to gluten, dairy, soy and corn and wouldn't have my additional amine / histamine intolerance! I have some kind of threshold that if I eat too much food that is high in amine / histamine I would start to have unpleasant allergic reactions that may last for 2-3 days (depending on the amount of histamine / amines I ate). It looks like it did get better when I went gluten-free, but I still have these reactions... In addition to that for some unknown reason I do not tolerate almost all vitamins / supplements, even hypoallergenic ones and even the ones that other failsafers tolerate.

And yes, I too was able to eat anything, didn't have any allergies / intolerances whatsoever. In fact, nobody in my family has any known allergies. It all started 2 years ago, first dairy, then gluten, then soy and corn. I also had cats and a dog thoughout all my childhood / youth without any issues, but now I have "allergic" type reactions if I am in the same room with a cat or a dog. It is not a true IgE allergy, it doesn't show up on any tests. My body is reacting in a weird way to a lot of different things...
  • 1
Better safe than glutened

Dairy Free / Gluten Free / Soy Free / Corn Free / Mostly Nut Free / Legumes Free
Low histamine / amine / glutamate diet
Restricted animal protein diet

#11 num1habsfan

 
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Posted 15 January 2009 - 12:12 AM

Sure sounds familiar!! I thought maybe I have refractory sprue, but the only specialist who even believes that I have Celiac says he doesn't think so.

January 1st was my 6th year anniversary of my start with Celiac, so next month will be my 6th year gluten-free. On the 28th, however, is going to mark my 3rd year of constant pain...which is a mystery, STILL. Still believe that it's an IBD since I do have all the symptoms, but they've never diagnosed me with me.

Who knows though, maybe it is just the Celiac being extra, extra sensitive.

I also have the problem that the pains last a MUCH longer period of time! The last time I was glutened, I don't even know how I was...I believe from a few crumbs that was accidently in something I ate at my parent's place. No joke: the pains lasted for 8 days!! And the extra symptoms (like the brainfog, nausea, etc) lasted yet longer than that.

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#12 jerseyangel

 
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Posted 15 January 2009 - 02:30 AM

Hi Lisa! I haven't seen you posting over here in a while :D

Funny you should mention Refractory Sprue. The first time I saw my gastroenterologist here in PA, she thought that from what I was telling her about my history and symptoms that this could be a case of refractory sprue. Something told me that it wasn't, and the endoscopy proved me right. (thank goodness)
  • 0
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

#13 num1habsfan

 
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Posted 15 January 2009 - 03:27 AM

Yeah, I was always still popping on but wasn't posting much until recently again. Have found a real need for everyone lately, and nobody understands each other better than Celiacs!

I haven't had an endoscopy done since January 2007, but I don't really want another....all that they found at that time was the Hiatus Hernia and Candidial Esophagitis (or however you spell it).

Oh, I've also found that DH is worsening. Even though I obviously avoid what triggers it, its been breaking out on my hands to the point where it i'm starting to look like someone I knew from my hometown who had Celiac...I remember him saying "see this? this is the dermatitis" and his hands were all purple and bumpy. It's doing this for me mainly in the finger joints!starting with the pimple-like spots and turning into hard skin that doesnt go away.

Arthritis has been more sensitive too :(.

  • 0

...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...
...26 years old...
...Look in my forum profile for ways to read my public sports articles...

R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)


#14 dilettantesteph

 
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Posted 15 January 2009 - 05:31 AM

I guess I'm lucky for a super sensitive. It's been a little over a year and I can still eat everything but gluten and not too much dairy. I can't eat anything made on shared equipment. I can't even eat some things made on dedicated equipment. It depends on where they get their supplies.

I'll weigh in on the cause of super sensitivity. At first I too thought it was from going so long without being diagnosed. 30 years of stomach pain and 10 years of not being able to get to the bathroom fast enough on occasion. For the last year or so it was happening about twice a week. Pooping in your pants that much is not pretty. My son was diagnosed at 10, and at first he seemed a lot less sensitive than me, so that fit. As time goes on, he seems almost as sensitive as I. He reacts to things made on shared facilities. Even by a place that tests to 5 ppm, and he only had a small piece. So, diagnosed at 10, he couldn't have been sick for as long as I. He only had noticeable symptoms for a few months. I think the the origin of super sensitivity must be genetic, and the poor guy was unfortunate enough to inherit all my celiac genes.
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#15 jerseyangel

 
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Posted 15 January 2009 - 07:36 AM

I haven't had an endoscopy done since January 2007, but I don't really want another....all that they found at that time was the Hiatus Hernia and Candidial Esophagitis (or however you spell it).

The endo I had last fall was my second. She also found a "small" hiatial hernia, but I don't think I get any symptoms from it unless I eat a lot at one time.

It's so discouraging when we hurt, and nothing shows up in the tests--I know it's been such a rough time for you. :( :)

I'll weigh in on the cause of super sensitivity. At first I too thought it was from going so long without being diagnosed. 30 years of stomach pain and 10 years of not being able to get to the bathroom fast enough on occasion. For the last year or so it was happening about twice a week. Pooping in your pants that much is not pretty. My son was diagnosed at 10, and at first he seemed a lot less sensitive than me, so that fit. As time goes on, he seems almost as sensitive as I. He reacts to things made on shared facilities. Even by a place that tests to 5 ppm, and he only had a small piece. So, diagnosed at 10, he couldn't have been sick for as long as I. He only had noticeable symptoms for a few months. I think the the origin of super sensitivity must be genetic, and the poor guy was unfortunate enough to inherit all my celiac genes.

Yes, the poor little guy. Bad enough we have to go through this, but I can't imagine how difficult this has to be on a child who has to go to school. :(

For the first 20 years that I was chronically ill, looking back the symptoms were nausea, persistant anemia and brain fog (didn't even know what that was till I found this board :P ).

The urgent D didn't come into play until after I was on the gluten-free diet. I had D more often in the year before I was diagnosed along with weight loss, and the tingling and numbness--and it got worse before it got better with the elimination of the other foods.
  • 0
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




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