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Losing Hope...


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135 replies to this topic

#76 love2travel

 
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Posted 10 August 2012 - 05:40 PM

Isn't that the truth! In the dictionary, I think the words Doctor and Arrogant are synonymous :) They like use that insulting word too... Psychosomatic... when they have NO idea what else to say.

Except for my doctor. He is wonderful! Thorough, empathetic, knowledgable, understanding and he does not make me feel rushed at all. He loves it that I bring a list of questions to ask. All this plus he is HOT! Wow. And the good thing is he has no idea! :P
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<p>Confirmed celiac disease February 2011 from biopsies. 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.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

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#77 GottaSki

 
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Posted 10 August 2012 - 05:49 PM

Except for my doctor. He is wonderful! Thorough, empathetic, knowledgable, understanding and he does not make me feel rushed at all. He loves it that I bring a list of questions to ask. All this plus he is HOT! Wow. And the good thing is he has no idea! :P

Clone him - quick ;)
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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 :)


#78 squirmingitch

 
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Posted 10 August 2012 - 05:51 PM

Clone him - quick ;)


Yeah! If we could only clone all the good docs. Sigh.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#79 love2travel

 
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Posted 10 August 2012 - 06:17 PM

Clone him - quick ;)

My physical is in two weeks (shudder) - I'll try then and see if he notices he is being cloned.
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<p>Confirmed celiac disease February 2011 from biopsies. 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.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#80 squirmingitch

 
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Posted 11 August 2012 - 08:59 AM

My physical is in two weeks (shudder) - I'll try then and see if he notices he is being cloned.

Posted ImagePosted ImagePosted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#81 GottaSki

 
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Posted 11 August 2012 - 09:24 AM

My physical is in two weeks (shudder) - I'll try then and see if he notices he is being cloned.

He won't miss one little hair :P
  • 0

-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 :)


#82 love2travel

 
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Posted 11 August 2012 - 09:25 AM

Posted ImagePosted ImagePosted Image

Would he notice my asking him for a cheek swab for his DNA? :lol:
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<p>Confirmed celiac disease February 2011 from biopsies. 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.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#83 squirmingitch

 
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Posted 11 August 2012 - 06:58 PM

Aw heck, just tell him outright that us gals on the celiac site want to clone him! He'll be flattered.Posted ImagePosted ImagePosted Image

Tell him we're fans!Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#84 ~**caselynn**~

 
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Posted 11 August 2012 - 07:35 PM

Except for my doctor. He is wonderful! Thorough, empathetic, knowledgable, understanding and he does not make me feel rushed at all. He loves it that I bring a list of questions to ask. All this plus he is HOT! Wow. And the good thing is he has no idea! :P


Do we have the same doc?? Cause I feel like you just described mine! Haha love it! 😃😃😃
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~**caselynn**~

#85 squirmingitch

 
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Posted 12 August 2012 - 05:05 AM

Oh GOODIE!!!!!! Two hot, wonderful doc to clone from. YES!!!!Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#86 kswan08

 
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Posted 14 August 2012 - 08:49 AM

I took a gluten-challenge for just one day. I was hesitant but did it. Thought I would do it for at least 3 days. No way! I was fine for about 8 hours. Then stomach cramping, PAIN, and achy all over. Today I am weepy for no reason and feeling anxious as well. I hate this feeling. I'm back to eating only gluten, soy and lactose free today although I don't feel like eating at all.
May not be celiac but it sure is intolerance.
Given that Celiac is an autoimmune disease - is it treated differently than gluten intolerance?
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#87 squirmingitch

 
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Posted 14 August 2012 - 10:14 AM

No. Gluten free is the treatment either way. The only thing would be to have your ferritin (iron) levels checked along with your B-12 & thyroid panel, CBC & CMP.

Sorry you fell like &*^%. (((HUGS)))
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#88 KMMO320

 
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Posted 14 August 2012 - 01:07 PM

I took a gluten-challenge for just one day. I was hesitant but did it. Thought I would do it for at least 3 days. No way! I was fine for about 8 hours. Then stomach cramping, PAIN, and achy all over. Today I am weepy for no reason and feeling anxious as well. I hate this feeling. I'm back to eating only gluten, soy and lactose free today although I don't feel like eating at all.
May not be celiac but it sure is intolerance.
Given that Celiac is an autoimmune disease - is it treated differently than gluten intolerance?



I went through 4 months of testing by 3 different doctors. I had multiple blood tests, genetic tests and a biopsy. They all agree that I do not have Celiac disease but 2 out of the 3 doctors believe I am Gluten Intolerant. I was told again today by my primary dr to stop eating it. I seem to not be bothered by cross contamination, and since I dont have Celiac disease, I dont worry about trace amounts, or food touching. But what I feel when I ingest a good amount of bread, or pasta, or baked goods and stuff is enough to send me to bed in pain and like you, I weep for no reason.

For both Celiac and Intolerance, the only treatment is to live gluten free. I feel better after 2 days of being gluten free again (tried it before for 3 weeks and OMG I felt so good!) than I have felt in months. It is very worth it. here it is 5pm and I dont need to take a nap, that doesnt sound like much but for me it is AMAZING. I am usually useless by 7pm.
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#89 kswan08

 
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Posted 17 August 2012 - 05:56 PM

I've been doing relatively well. I added a digestive enzyme along with probiotic, prilosec and have been gluten, lactose and soy free for several weeks now. I did ONE day of gluten challenge and while it took hours before I reacted, it wasn't pretty. So I'm totally committed to my strict diet regimen. BUT ... I'm stumped. I bought and baked corn muffins from Really Great Food Co. - the ingredients were White rice flour, potato starch flour, organic cornmeal, sugar, aluminum-free baking powder, xanthan gum, salt. I used 2 eggs and Almond milk. They tasted great. And within 2 hours I had cramping. I didn't think it could be the muffins so today I ate 2. And the cramps came back and I got sick.
I don't have problems with the almond milk and if I eat eggs I sometimes get a rash but haven't had any problems eating food with eggs in it.
Any thoughts?
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#90 tom

 
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Posted 17 August 2012 - 06:20 PM

Nice to hear you're mostly doing well. (Esp w/ thread's title, right?)
I've read of ppl here w/ specific xanthan gum issues & of course we can have rice, potato, or corn problems but at least those are easy to check & you probably already know they're fine or wouldn't have tried the mix.(?)

How about the pan? Anything less than brand new has to be questioned at this point. Or maybe the muffins were in cupcake ....uhh .. .cups?

Not sure what's a good type of product to test xanthan gum with. I'd think ideally w/ a short list of other status-known ingredients. Hoping others have some ideas/experience.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07


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