Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did a celiac panel on me. I had always been told my celiac tests came back negative and they were done repeatedly by different doctors. Well I came across the lab report today during a futile search for my Social Security card. My anti-gliadin IGA was positive. I guess I am not a sero-negative celiac after all. Just one with stupid doctors. The only thing I can figure is since the IGG was negative he didn't think the positive IGA was significant. Or he was so busy writing scripts for me for drugs that did no good at all that he didn't read the report.
Well I won't let this bring me down. I finally found a job and start tomorrow and I am not going to let this find ruin my happy day.
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Just A Little Bit Angry
Started by ravenwoodglass, Nov 15 2012 12:10 PM
Get and read all lab reports
18 replies to this topic
#1
ravenwoodglass
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Posted 15 November 2012 - 12:10 PM
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)
"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)
#2
shadowicewolf
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Posted 15 November 2012 - 12:17 PM
Same happened to me with the genetic test. It was played down.
Oh well :/
Oh well :/
ADHD
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
#3
Celiac Mindwarp
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Posted 15 November 2012 - 12:20 PM
Great to hear you have a new job, I truly wish you a fantastic 1st day tomorrow.
I'm sure you will get your head round this other stuff in time. Sure we'll be here for you.
Very good luck, yeay you. Love to know how the job goes, be sure to let us in on it
Mw x
I'm sure you will get your head round this other stuff in time. Sure we'll be here for you.
Very good luck, yeay you. Love to know how the job goes, be sure to let us in on it
Mw x
- 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
Celiac.com - Celiac Disease Board Moderator
- 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
Celiac.com - Celiac Disease Board Moderator
#4
kareng
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Let them eat gluten-free cake!
Posted 15 November 2012 - 12:54 PM
Yeah! I hope you like your new job!
ignoring the not happy stuff so you don't dwell on it and ruin your first day
ignoring the not happy stuff so you don't dwell on it and ruin your first day
Celiac.com - Celiac Disease Board Moderator
"I believe that if life gives you lemons, you should make lemonade... And try to find somebody whose life has given them vodka, and have a party" - Ron White
""I like the cover," he said. "Don't Panic. It's the first helpful or intelligible thing anybody's said to me all day."
― Douglas Adams, The Hitchhiker's Guide to the Galaxy
“Life may not be the party that we hoped for…But while we’re here, we should dance.”
#5
bigbird16
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Posted 15 November 2012 - 01:35 PM
Congrats on your new job!!
Migraines, ataxia, peripheral neuropathy, anxiety, paranoia, joint pain, vivid nightmares, exhaustion & lethargy, brain fog, bloat, GI issues--all gone or significantly reduced since dietary changes were made
Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7
"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)
Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7
"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)
#6
mushroom
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Mushroom
Posted 15 November 2012 - 01:52 PM
My goodness, what a revelation after all these years 
As you say, sure reinforces what we preach to newbies.
Fabulous news about your job - best of luck to you.
As you say, sure reinforces what we preach to newbies.Fabulous news about your job - best of luck to you.
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
Celiac.com - Celiac Disease Board Moderator
"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
Celiac.com - Celiac Disease Board Moderator
#7
Lisa
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Posted 15 November 2012 - 02:49 PM
As frustrating as it may feel K, you must have a sense of comfort and affirmation.
AND great news about your new job. What will you be doing?
AND great news about your new job. What will you be doing?
Lisa
Gluten Free - August 15, 2004
"Not all who wander are lost" - JRR Tolkien
Gluten Free - August 15, 2004
"Not all who wander are lost" - JRR Tolkien
#8
a1956chill
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Posted 15 November 2012 - 03:18 PM
Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did a celiac panel on me. I had always been told my celiac tests came back negative and they were done repeatedly by different doctors. Well I came across the lab report today during a futile search for my Social Security card. My anti-gliadin IGA was positive. I guess I am not a sero-negative celiac after all. Just one with stupid doctors. The only thing I can figure is since the IGG was negative he didn't think the positive IGA was significant. Or he was so busy writing scripts for me for drugs that did no good at all that he didn't read the report.
Well I won't let this bring me down. I finally found a job and start tomorrow and I am not going to let this find ruin my happy day.
I have tried to reply to this post and honestly I am having difficulty doing so. So many thoughts and feelings running ramped inside my head and heart.I dont know where to start.
Just know that I understand and know I am sending (( HUGS)) your way .
Good luck with the new job,,, I hope it is something you will love doing
Gluten free Oct/09
Soy free Nov/10
After a very, very long battle to keep dairy .I am dairy free
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.
Hashimoto's thyroiditis disease . April/11
Diagnosed type 2 Diabetes March/13
#9
ravenwoodglass
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Posted 15 November 2012 - 03:29 PM
Thanks for the well wishes everyone. I will be working at a home improvement store. It is a family owned business that has been around since the 60's. I have shopped there for 20 years and some of the folks working there have been there since the place opened. It's a good company to work for although the starting wage is low. They do have plenty of opportunity to increase your wages though with in store classes and such. I have been working as a volunteer at a food bank/thrift store for a couple years now and loved the place and the people and am sad to leave but my budget demands paid employment. It will be nice to be able to keep my heat above 59 to 60 degrees this winter LOL.
Although I had a definate diagnosis it is nice to see something in lab work that actually supported it. I am however glad I didn't find this just a couple of years after diagnosis since I would have been much more emotional then and might even have considered sueing. I know I would have regretted that though as it wouldn't have changed anything in the amount of time it took to heal or the pain I and my family endured. In 5 days it will be my 10 year anniversary of diagnosis. Hard to believe how fast the time has gone by. I'll have to celebrate with a cheesecake and maybe PF Changs.
Although I had a definate diagnosis it is nice to see something in lab work that actually supported it. I am however glad I didn't find this just a couple of years after diagnosis since I would have been much more emotional then and might even have considered sueing. I know I would have regretted that though as it wouldn't have changed anything in the amount of time it took to heal or the pain I and my family endured. In 5 days it will be my 10 year anniversary of diagnosis. Hard to believe how fast the time has gone by. I'll have to celebrate with a cheesecake and maybe PF Changs.
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)
"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)
#10
love2travel
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Čeznem da se u Hrvatskoj!
Posted 15 November 2012 - 03:30 PM
Oh, wow. That is quite the story. I'm so happy for this new opportunity. Who knows? It could be THE job you've been looking for. Tell us all about it, ok? Have a wonderful first day, and next day, and next day...
Confirmed celiac disease February 2011 from biopsies (had both gastroscopy and colonoscopy). Strictly gluten free March 18 2011.
Diagnosed with fibromyalgia April 13 2011.
3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.
Osteoarthritis in back and hips.
Chronic insomnia mostly due to chronic pain.
Aspartame free May 2011.
Dairy free August 15 2011. Can tolerate aged cheese Jan. 2012. Cannot tolerate much cheese at all 2013 so am eating lactose free cheese and drinking lactose free milk.
When our lives are squeezed by pressure and pain, what comes out is what is inside.
#11
a1956chill
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Posted 15 November 2012 - 04:20 PM
This may be why your story hit a nerve for me . I am only 18 months into my " official " diagnosis ( even though I have been gluten free for 3 years)Although I had a definate diagnosis it is nice to see something in lab work that actually supported it. I am however glad I didn't find this just a couple of years after diagnosis since I would have been much more emotional then and might even have considered sueing. I know I would have regretted that though as it wouldn't have changed anything in the amount of time it took to heal or the pain I and my family endured. In 5 days it will be my 10 year anniversary of diagnosis. Hard to believe how fast the time has gone by. I'll have to celebrate with a cheesecake and maybe PF Changs.
The pain and suffering is still quite fresh in my mind ( and body). I am still too close to the pain and suffering not to be emotional. And the anger, the anger of going 40+ years mis and un dignosised still lingers,,, and some days like today it is quite intense
Gluten free Oct/09
Soy free Nov/10
After a very, very long battle to keep dairy .I am dairy free
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.
Hashimoto's thyroiditis disease . April/11
Diagnosed type 2 Diabetes March/13
#12
GottaSki
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"Migratory flight complete."
Posted 15 November 2012 - 04:32 PM
Yay! New job - that deserves a nice dinner out - double celebration for your 10 year Silly Yak Birthday - you deserve an extra slice of that cheesecake
I know how angry you are. Ten years ago my Primary doc's nurse told me over the phone all my tests results for a multitude of annual tests were "normal" - I asked her to double check as I had prior "abnormal" results on a test we women love each year. Yep, everything absolutely 100% normal. Fast forward nine months - I got a call from my docs office make sure I had followed up on my abnormal test
. They said oh not to worry these things are very slow to develop into something more serious...well once again I was in the unlucky, abnormal 5% of cases that are agressive -- those abnormal cells turned into cancer during the nine month mistake - I am thankful there was a checks and balance in place that caught the error (quite surprised given everything I've learned about modern medicine since then) and was even more thankful that it was treatable. Regardless of good outcome, it put my family through absolute hell. Ever since I chase down written/electronic results for everyone in my family -- even my sister and parents -- yep I'm a little hyper-sensitive on this particular issue.
At least on the flip side we can finally - ten years belated welcome you to the "positive, is positive" club!
Thank you for helping so many during these past ten years - including me
I know how angry you are. Ten years ago my Primary doc's nurse told me over the phone all my tests results for a multitude of annual tests were "normal" - I asked her to double check as I had prior "abnormal" results on a test we women love each year. Yep, everything absolutely 100% normal. Fast forward nine months - I got a call from my docs office make sure I had followed up on my abnormal test
. They said oh not to worry these things are very slow to develop into something more serious...well once again I was in the unlucky, abnormal 5% of cases that are agressive -- those abnormal cells turned into cancer during the nine month mistake - I am thankful there was a checks and balance in place that caught the error (quite surprised given everything I've learned about modern medicine since then) and was even more thankful that it was treatable. Regardless of good outcome, it put my family through absolute hell. Ever since I chase down written/electronic results for everyone in my family -- even my sister and parents -- yep I'm a little hyper-sensitive on this particular issue.At least on the flip side we can finally - ten years belated welcome you to the "positive, is positive" club!
Thank you for helping so many during these past ten years - including me
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#13
Lisa
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Posted 15 November 2012 - 04:40 PM
written/electronic results for everyone in my family -- even my sister and parents -- yep I'm a little hyper-sensitive on this particular issue.
At least on the flip side we can finally - ten years belated welcome you to the "positive, is positive" club!
Thank you for helping so many during these past ten years - including me
YES indeed!
SO many you have helped as they traversed their new lifestyle.
Lisa
Gluten Free - August 15, 2004
"Not all who wander are lost" - JRR Tolkien
Gluten Free - August 15, 2004
"Not all who wander are lost" - JRR Tolkien
#14
GFinDC
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A little farting never hurt anybody... :-).
Posted 15 November 2012 - 07:43 PM
Wow Raven, bummer and anti-bummer in the same day! It's no surprise you didn't catch that little blip of numbers on the lab report back then. Heck, they told you it was negative after all. And we all know how untreated brain fog, or celiac, affects our thinkers.
Many congrats on the new job! That sounds like an interesting one. Workng with people in a setting like that seems like a nice way to spend the day to me.
Geez Lisa, guess we all should be checking everything our doctors say. It's hard to understand that kind of mistake.
It's no surprise you didn't catch that little blip of numbers on the lab report back then. Heck, they told you it was negative after all. And we all know how untreated brain fog, or celiac, affects our thinkers.Many congrats on the new job! That sounds like an interesting one. Workng with people in a setting like that seems like a nice way to spend the day to me.
Geez Lisa, guess we all should be checking everything our doctors say. It's hard to understand that kind of mistake.
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
#15
gatita
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Posted 15 November 2012 - 08:45 PM
Wow. Just wow.
I want to say "unbelieveable" but I am learning fast that nothing is unbelievable when it comes to doctors and celiac.
I wholeheartedly ditto the thank you's for all the help and common sense and support you give everyone here.
I want to say "unbelieveable" but I am learning fast that nothing is unbelievable when it comes to doctors and celiac.
I wholeheartedly ditto the thank you's for all the help and common sense and support you give everyone here.
Diagnosed with wheat hates me 4/13
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