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Biopsy Negative...crying


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#16 Igg postive

 
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Posted 21 March 2011 - 04:16 PM

Dr. Sheila Crowe (GI doctor who specializes in Celiac Disease) says:

"So how do we know who really needs to be gluten-free?

Some patients have symptoms of celiac disease but do not have an abnormal intestinal biopsy that is taken before starting a gluten-free diet (by definition, they are not categorized as having celiac disease). If blood tests show that such patients also have antibodies to tissue transglutaminase (TTG) or deamidated gliadin peptide (DGP), I would suggest that these individuals consider going on a truly gluten-free diet, since they are most likely on their way to celiac disease."

The whole article is at:

http://politicook.ne...lerance-celiac/

Do you think this statement applies to you?
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#17 WinterSong

 
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Posted 24 March 2011 - 08:00 PM

I've also read that some people with Irritable Bowel Syndrome (the symptoms of which are very similar to Celiac) actually do very well on a gluten free diet. Have you looked into IBS at all?
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Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#18 ravenwoodglass

 
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Posted 25 March 2011 - 03:54 AM

I've also read that some people with Irritable Bowel Syndrome (the symptoms of which are very similar to Celiac) actually do very well on a gluten free diet. Have you looked into IBS at all?

IBS isn't really a diagnosis it is a symptom. Since testing has so many false negatives it is a good idea for anyone with IBS symptoms to give the diet a good strict try after all celiac testing is done. Many of us that suffered undiagnosed for years were told constantly that we had IBS when what we really had was celiac or gluten intolerance. Sometimes the body can give us the answer that testing can not.
  • 1
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)

#19 cszymanski12

 
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Posted 25 March 2011 - 04:13 PM

Reading your post brought me back to not too long ago how I felt/still do feel. It is something that many don't understand besides those who may be going through it. The most unfortunate thing is that the patients (us) know more than alot of these doctors. There is so much research continually being done to try to help those who are fighting for their diagnosis and better health to find it sooner rather than later. Im in my 20's now and I cant tell you how many doctors I seen. Each time walking out of the office in tears wondering if I really was crazy. I researched everything and I educated myself because I knew all along that was what was going on with me. I had friends who had it who pushed me to keep trying to get a diagnosis and that there was a doctor out there that would help me I just had to find them. My diagnosis is still in its process even though its been almost a little over a month since I was diagnosed. My GI actually didnt even end up diagnosing me my allergist is the one who pushed the matter and the tests. I guess having another doctor push my doctor helped a little. I am having my biopsy redone and my blood test in upcoming may so that my GI can make see from him doing both things that I am coming back as positive for celiac or not. Which, if those come back neg it doesnt mean that I necessarily am not celiac. I have the confirmation that I have GS right now and thats enough for the time being to give me a small amount of closure. There are sooooo many different ways that celiac disease is misdiagnosed or the tests are improperly being handled, selected or interpreted in regards to the patient.

If your biopsy is neg it may not be a true neg. You may have patchy areas where the villi have atrophy, or if you have only partial atrophy the blood test will not pick up on it and it will come back neg. My friend's mother actually had villi atrophy in her colon that her GI found. THere are several tests for sensitivity including the stool/mucosa, and that ENTEROLAB test is very reliable and I would recommend it I myself had often considered it. There are also other sensitivity tests that can be used. THere is one other method that I have heard very little about being used specifically because its invasive. A tube is swallowed by the patient and the GI takes a sample of the intestinal fluid and very often they find the antibodies in there as well. You know your body better than anyone do not give up just because someone who wears a white coat with a degree and has the title to diagnose you stop you from getting better. I have nothing against doctors because there are many who will help their patients but that number is so small. I myself am in the medical field I am a veterinary professional and we treat our patients with the very best care and no diagnosis is left out nor unsolved.

I am so sorry you are going through what you are going through, however, you are not alone and many of us have been in your shoes and still are at one point or another. Everyone is here to give advice and share the knowledge that we obtain as we get stronger in dealing with this. Many have also self diagnosed themselves and NO that is not at all a bad thing to do. If the gluten-free is working then screw the doctors I dont know how many told me that on here and regardless if I would have gotten a diagnosis or not I would have done it myself. I have other health relations aside from this now and I imagine it only getting worse if I was untreated.

You will be surprised how things unfold in the end. A allergist and the nurse practitioner are what helped me get to where I am and I never imagined that. I was placed in the hands of a better doctor who is doing so much more for me and has found me a proper dermatologist to take biopsies of my skin. I have medication for my IBS and I see such a difference. Even though Im no where near out of the "fog" here I am somewhere further than before. gluten-free is what has saved my life and many others as well. I now cant have soy either or certain types becasue I found out it triggers my IBS. My advice is any questions you have ask them on here I have just been amazed how much help I had gotten and my dear friend who has been a celiac for a good 5 years now helped me immensely. I learned so much including that I had to get gluten-free toothpaste and to use Johnson's baby shampoo/lotion to shower because of the rashes being opened and the risk of the reg products and cosmetics i used getting into my skin. There are also several books and I HIGHLY recommend them they are reliable hence far in my experience and I love them. THere is one that is wonderful its call "The Gluten Collection" by Shari Lieberman. Its fantastic Im serious it has extensive information on Gluten sensitivity and celiac disease as well as the differences. Most importantly the very many things that celiac is misdiagnosed as case studies of examples and recipes, ingredients to stay away from and the good ones. ALso tests and so much more its honestly like a bible to me I refer to it so often.

And once you start to get the hang of it which is my current issue because its been so emotional for me is the food. THere are so many gluten-free options now and stores have sections in them and stores are supportive of us and the food is actually very good and regardless I wouldnt ever go back to what I had before because of how god awfully sick I get its not worth it. Restaurants are also steadily adapting their menus to celiacs as well. You can still enjoy food u used to love u just have to find the safe version of it which is what is hard for alot of us. I loved bread and its so frustrating to not be able to ever eat my italian bread again but my gluten-free bread I have made my favorite now because I know that its whats best. I hope this has helped you and I hope you get to feeling better soon. I still am not myself but slowly getting there it takes a while and your body may still get ill on gluten-free but give it some time. You will be amazed how everything you have been experiencing pieces together to this source and its scary at first to think that gluten can be so poisonous to our bodies. My mother was tested and she tested positive and shes almost 60 now and shes been so sick but never got help she learned to live with it and now has osteoporosis, anemia, arthritis, and IBS almost IBD now etc. THose of european nationality have a predisposition in a form as well. You dont have to be born there but someone down the line was. In europe now everyone is tested for celiac disease and there is a Codex law which inquires that all food labeled gluten-free is gluten-free 100% and free of wheat etc. guaranteed and most food there is gluten-free now. I am 50% Polish and 25% German all makes sense to me now. And this isnt the case with everyone just another thing that can vary from case to case with celiac. I apologize for the extensive response but I want to help others as much as I can especially since I myself am still learning. Feel better soon
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Clarissa Szymanski
Diagnosed with PCOS in November 2008
Currently diagnosed with Gluten Sensitivity March 2011
Misdiagnosed with GERD when I was young, and IBS in December 2010
Gluten Free as of March 2011
Soy Free as of March 2011
Lactose Free as of March 2011
"When in doubt, go without"

#20 katiekay

 
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Posted 25 March 2011 - 04:20 PM

I am new to celiacs. So totally confused here...
I thought you could have a negative test result but still have celiacs????? Am I wrong about this? Should you do a gluten challenge like I was just reading about??? Any answer would also help me as I begin this journey...
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#21 cszymanski12

 
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Posted 25 March 2011 - 04:57 PM

I am new to celiacs. So totally confused here...
I thought you could have a negative test result but still have celiacs????? Am I wrong about this? Should you do a gluten challenge like I was just reading about??? Any answer would also help me as I begin this journey...



There is both the biopsy which so many doctors love to call the "gold standard" which it can be and there is the blood test which will test for the antibodies in the blood. Yes you can have neg results and still be a celiac, however there are different variations to that. My post above yours explains partially about testing and I know many of the more experienced members can elaborate on that for me and explain that to you a little better I do not want to mislead you with the specifics of the blood tests. In some cases researchers have found that celiacs can primarily appear as gluten sensitive first because they have not had the length of time for their villi in to become flattened and its caught early enough. If left untreated then there is a grave possibility they can/will become full blown celiac. However, they have still seen some that are GS and go gluten-free and later in life are then full blown celiacs. I find loop holes in some of the research sometimes but its a growing process still. The sooner you go gluten-free the better you will save yourself so much by doing it. I cant speak for much because i didnt go decades of being misdiagnosed but years in my case and you only will get sicker. Its not worth it to be too late. If it is the case where the symptoms are showing up as celiac but the test results are neg you may have an early start to save your body the extensive damage and its in the best interest to go gluten free. I would suggest trying it and see how it works for you, which im sure you will see the difference. WHen going gluten-free it takes commitment so you have to really be careful and stick to it and its hard I am still dealing with the emotions of the life change because Im only in my 20's this was not how I pictured things.

You need to start to get yourself better. Im not sure if you have had any testing at all yet?? Biopsies?? If not and you are scheduled to get them soon or you think it will be soon wait to go completely gluten-free until after the blood test because it can cause a false neg because it will mask your symptoms and will then cause a "error" in your test. The more you know the better off you are especially becaue if you havent already learned you will that doctors are not very good with diagnosing this disease and the repetition it takes to catch it at the right time and in the right manner. But trying gluten-free things just to see how it reacts with you I suggest if you havent gotten the ball rolling with tests yet. Hope this helps, good luck
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Clarissa Szymanski
Diagnosed with PCOS in November 2008
Currently diagnosed with Gluten Sensitivity March 2011
Misdiagnosed with GERD when I was young, and IBS in December 2010
Gluten Free as of March 2011
Soy Free as of March 2011
Lactose Free as of March 2011
"When in doubt, go without"

#22 eatlovehope

 
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Posted 26 March 2011 - 12:23 AM

Wow Stephanie your story sounds very similar to mine. I too tested negative for TTG & Biospy and the only thing I did test positive for was Anit-gliadin IGA. My doctor too said I don't have Celiac and that was pretty much end of the conversation. But my question was well why did I have a positive Anit-gliadin IGA and she said that it could be a false positive. I was not happy with that respond, so then head to this forum.

After the suggestion from Zu888 I have read the book Healthier Without Wheat and it really has confirmed in my mind I am not Celiac Disease but I do have non-celiac gluten intolerance.


As per the book it states
"Gliadin is a type of gluten. When the immune system attacks gluten, it produces gliadin antitbodies. If you have gliadin antibodies, then it is apparent that your immune system has interpreted that gluten is not food; it is a foreign invader that must be eliminated from the body. It attacks any gluten you eat. If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance".

Basically the only different between the Celiac Disease and non-celiac gluten intolerance, is that in Celiac Disease you have Villous atrophy (damage of villi in the stomach), while symptoms & treatment are exactly the same for both.

I too was so confused but now I'm positive that I have non-celiac gluten intolerance and will live a gluten free lifestyle for life.

Hope this helps, the book is definitely a great read and really puts everything into content
  • 0

#23 ravenwoodglass

 
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Posted 26 March 2011 - 03:36 AM

I am new to celiacs. So totally confused here...
I thought you could have a negative test result but still have celiacs????? Am I wrong about this? Should you do a gluten challenge like I was just reading about??? Any answer would also help me as I begin this journey...


Yes you can have celiac and still test negative. If you are doing well on the diet you may want to just stay on it. If you feel strongly that you cannot stay gluten free without a diagnosis then you can do a 3 month gluten challenge and load up on gluten and get retested. If you have been gluten free for any length of time and you need to be gluten free then the challenge is likely to make you feel very ill. That IMHO is diagnostic in itself and you would of course go back to the diet strictly after that challenge was done no matter what the test results.
  • 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)

#24 cszymanski12

 
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Posted 26 March 2011 - 04:43 PM

Wow Stephanie your story sounds very similar to mine. I too tested negative for TTG & Biospy and the only thing I did test positive for was Anit-gliadin IGA. My doctor too said I don't have Celiac and that was pretty much end of the conversation. But my question was well why did I have a positive Anit-gliadin IGA and she said that it could be a false positive. I was not happy with that respond, so then head to this forum.

After the suggestion from Zu888 I have read the book Healthier Without Wheat and it really has confirmed in my mind I am not Celiac Disease but I do have non-celiac gluten intolerance.


As per the book it states
"Gliadin is a type of gluten. When the immune system attacks gluten, it produces gliadin antitbodies. If you have gliadin antibodies, then it is apparent that your immune system has interpreted that gluten is not food; it is a foreign invader that must be eliminated from the body. It attacks any gluten you eat. If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance".

Basically the only different between the Celiac Disease and non-celiac gluten intolerance, is that in Celiac Disease you have Villous atrophy (damage of villi in the stomach), while symptoms & treatment are exactly the same for both.

I too was so confused but now I'm positive that I have non-celiac gluten intolerance and will live a gluten free lifestyle for life.

Hope this helps, the book is definitely a great read and really puts everything into content



I just read your comment and this book sounds like a great one. Do you have any suggestions where I would have the best luck to find it like amazon or any stores?? This would be a huge help for me since I too am non-celiac gluten intolerant. I have become very fond of reading these books and they are also very comforting. The one that I also have that I love if you look at one of my responses I placed above I think you would also find helpful since it gives you so much helpful information and helps you understand the difference and how to best manage with which ever you are diagnosed with, even though they are very similar except for the true celiac has villi atrophy which i seen u also mention. Just a suggestion Im willing to share my resources with everyone.
  • 0
Clarissa Szymanski
Diagnosed with PCOS in November 2008
Currently diagnosed with Gluten Sensitivity March 2011
Misdiagnosed with GERD when I was young, and IBS in December 2010
Gluten Free as of March 2011
Soy Free as of March 2011
Lactose Free as of March 2011
"When in doubt, go without"

#25 cszymanski12

 
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Posted 26 March 2011 - 04:59 PM

Yes you can have celiac and still test negative. If you are doing well on the diet you may want to just stay on it. If you feel strongly that you cannot stay gluten free without a diagnosis then you can do a 3 month gluten challenge and load up on gluten and get retested. If you have been gluten free for any length of time and you need to be gluten free then the challenge is likely to make you feel very ill. That IMHO is diagnostic in itself and you would of course go back to the diet strictly after that challenge was done no matter what the test results.



I actually have a question regarding eating gluten again before you are going to get tested which for me will be the second time. I am non-celiac gluten intolerant but my GI wants to do the tests at his office so he is comfortable with my diagnosis. I dont quite understand why he didnt just do them and then have me get the other tests but he seems to do everything out of order. I am content with what my diagnosis is currently and its the same treatment I never wanted a serious diagnosis and as long as I get to my old self I didn't care. Little by little I have been feeling so much better with gluten-free and the elimination of the soy which i had no choice and lactose. You guys were right its remarkable how much better you will feel. Do you have a suggestion on how soon before Im going to get tested I should start loading up on gluten? I don't want to go through the battle any longer than I have to, I have read and heard that 3-4 weeks before you should go back on it but I figured there might be variations to that. Also, I know this might sound strange but for the best interest in getting the most accurate results possible is there anything that is recommended to be eaten specifically I was told bread by a friend that is a celiac she said like 6 or so pieces of bread a day. I have a little over a month until my test again so I wanted to make sure I would ask since I always can count on everyone here for help.
  • 0
Clarissa Szymanski
Diagnosed with PCOS in November 2008
Currently diagnosed with Gluten Sensitivity March 2011
Misdiagnosed with GERD when I was young, and IBS in December 2010
Gluten Free as of March 2011
Soy Free as of March 2011
Lactose Free as of March 2011
"When in doubt, go without"

#26 IrishHeart

 
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Posted 27 March 2011 - 11:22 AM

IBS isn't really a diagnosis it is a symptom. Since testing has so many false negatives it is a good idea for anyone with IBS symptoms to give the diet a good strict try after all celiac testing is done. Many of us that suffered undiagnosed for years were told constantly that we had IBS when what we really had was celiac or gluten intolerance. Sometimes the body can give us the answer that testing can not.



Ditto for me! IBS is a "broad term" applied to a syndrome--a collection of symptoms...irritable bowel---yes, it IS VERY IRRITABLE, doctor!! It's pissed off---but WHY??? :angry:

Listen to your body. Gluten wreaks havoc. If you feel better off it, you've got a gluten issue.

Tests are wrong all the time, unfortunately. Go with your gut (pun intended :)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 a1956chill

 
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Posted 27 March 2011 - 11:35 AM

Go with your gut (pun intended :)

:D I love this , it made me smile :D
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#28 IrishHeart

 
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Posted 27 March 2011 - 11:36 AM

I had a NEG blood test back in 2010 and I had been gluten-free for 4 weeks at the time, thinking it was a good idea. I had been VERY ILL for 2 years and felt Gluten was a real problem. My stupid doctor said it wouldn't affect the test :unsure: I believed him :unsure: and continued to eat gluten for ANOTHER year as I slowly dwindled down to nothing. A gastro doc scoped me back in '09, but failed to biopsy :angry: I just kept losing weight, my brain function and ability to drive, etc....Only my PC doc was able to confirm my diagnosis.

I wouldn't eat gluten again for a test , but that's just me. I never want to be as deathly ill as I was again.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 IrishHeart

 
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Posted 27 March 2011 - 12:35 PM

:D I love this , it made me smile :D



:D good! :D
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#30 mushroom

 
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Posted 27 March 2011 - 03:44 PM

Just had a horrible nightmare!!! What if we needed a doctor's prescription for gluten free foods??:unsure: :blink:
  • 0
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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