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"Super Sensitive" Celiacs.....


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477 replies to this topic

#466 psawyer

 
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Posted 14 February 2011 - 08:37 PM

The search function is context sensitive. If you use it while viewing a topic, it will by default search only that topic. You can change this via the pull down menu to the right of the search box.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#467 lolipopins

 
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Posted 25 December 2012 - 10:02 AM

I just wanted to say thank you all for sharing and EXISTING! I'm sorry you all suffer as I do, but thank GOD I'm not crazy. I really believe I'm conjuring these symptoms as I've been told for 18+ years.....I know I'm sick but i question sometimes if all this stress over the food is really necessary. I know it is, I know this is what I have to do, but it gets to be to much some days and then I find this healing community Living my life and sharing my struggles. Thank you all for the details and strategies. I've been gluten-free for 2+ years, my daughter and son are gluten-free as well, Daughter is seeming to be super sensitive as well. I have a hard time convincing the husband to not sneak G to my son who is seemingly much less reactive and has delayed reactions. Its a journey...the Holidays make it bumpy, but you guys really help. Thanks!
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#468 Chaff

 
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Posted 27 December 2012 - 09:46 PM

Thanks for reviving the thead -- I hadn't seen it before, and I scrolled through tons of pages and took some notes. Lots of useful information buried in here!
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celiac, hypothyroid, hereditary hemochromatosis
 


#469 TiffanyKatherine

 
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Posted 02 January 2013 - 07:11 PM

In reality I have given up soy, except for maybe oil and soy lecithin. Gluten free flours and pastas with soy would give me bad stomach issues and pains, usually on my left side.

Cathy


The left side is my worst enemy for pain.
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#470 TiffanyKatherine

 
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Posted 02 January 2013 - 07:32 PM

A few months ago, I had stool testing for food intolerances by Dianos-Techs and was glad I did. It showed that I getting gluten antibodies still and that I was allergic to egg whites. I'd been making my own mayo with eggs so this was a shock. I thought I was fine with them. It came back positive for candida and some kind of digestive immune system problem too ...

Genova is another lab that looks at food intolerances .. does Enterolab look at all that too ?


Does anyone know if doctors in Canada would test for gluten antibodies showing up in stool or saliva? I seen the site and they did both stool and saliva testing kits
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#471 TiffanyKatherine

 
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Posted 02 January 2013 - 07:39 PM

oh honey, let me help you out...
http://www.celiac.co...showtopic=41099

Posted Image


Ohh la la, I am heading there right now!
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#472 kareng

 
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Posted 02 January 2013 - 07:59 PM

Ohh la la, I am heading there right now!


That is a post from 2009 linking to a 2007 post. 5 year old product info is out of date. You might want to verify if it is the same now.
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#473 1desperateladysaved

 
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Posted 02 January 2013 - 08:50 PM

When I first began the forum we thought I might have got ideas from the Super=sensitives and "copied them". Now I believe that I found my reactions, because you helped to define them. I was super sensitive all along and knowing it could happen didn't change that.

My symptoms 6 months later are more undeniable than ever. I keep marveling that I really am acting like a celiac. I keep wondering how nobody around me thinks it seems like too big of deal physically. Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.

Sorry, I didn't make it to the end of the thread, yet and must sign off.
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#474 Celiac Mindwarp

 
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Posted 03 January 2013 - 12:48 AM

(((((((Hugs)))))))
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#475 mushroom

 
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Posted 03 January 2013 - 01:00 AM

Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.


Yep. No one told us when we were younger how tough we would have to be, or we would have trained harder (although I got some pretty good training along the way -- and one kind person who took me under her wing because she understood :wub: ) Funny how those people stand out in our lives -- that one person, and my 8th grade teacher probably saved my life.

The only people who understand celiacs are celiacs. I hope your path gets easier and your coworkers more understanding. May you find someone to take your side, to hold your hand and guide you through the celiac doldrums. I would if I were there, because I KNOW! :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#476 GottaSki

 
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Posted 03 January 2013 - 06:52 AM

Yep. No one told us when we were younger how tough we would have to be, or we would have trained harder (although I got some pretty good training along the way -- and one kind person who took me under her wing because she understood :wub: ) Funny how those people stand out in our lives -- that one person, and my 8th grade teacher probably saved my life.

The only people who understand celiacs are celiacs. I hope your path gets easier and your coworkers more understanding. May you find someone to take your side, to hold your hand and guide you through the celiac doldrums. I would if I were there, because I KNOW! :)


Well said Shroomie!!!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#477 dilettantesteph

 
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Posted 03 January 2013 - 10:07 AM

When I first began the forum we thought I might have got ideas from the Super=sensitives and "copied them". Now I believe that I found my reactions, because you helped to define them. I was super sensitive all along and knowing it could happen didn't change that.

My symptoms 6 months later are more undeniable than ever. I keep marveling that I really am acting like a celiac. I keep wondering how nobody around me thinks it seems like too big of deal physically. Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.

Sorry, I didn't make it to the end of the thread, yet and must sign off.

It is hard coping with celiac disease, and even more so when you find out that you are super sensitive. There are few who understand and many who tell you that you couldn't possibly be reacting to what you are reacting too. I am lucky to have supportive doctors and to have found other super sensitive celiacs who have been very supportive. I would love to pay it forward and I offer you any help you need.
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#478 teruff

 
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Posted 04 February 2013 - 04:39 PM

Jerseygirl I had the same problem! I've been dealing with celiac disease for about 6 years and I went through the same thing. I most definitely have become more sensitive through the process but my anxiety has gone down dramatically. The only time it ever flares up is if I eat gluten. As with the symptoms I also have noticed that they aren't as severe (unless I eat large amounts of gluten) but they do drag. I will feel tired for a longer period of time and be bloated for longer :angry: . It also KILLS my work outs, I sweat about 50% more and it is so much harder to get through.
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