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Losing Hope...


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#16 bartfull

 
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Posted 25 July 2012 - 02:34 PM

Bison is a good choice. I have never heard of bison being injected with anything, either the meat or the animals. Yes, it is expensive, but it is worth it to me. When I get grass fed beef, I get it from a local rancher so I know it is safe. That is ONE advantage to living where I do - the produce in the stores is pitiful, but the meat is really really good.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


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#17 FernW

 
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Posted 25 July 2012 - 02:42 PM

I will put my 2 cents in too. I had a negative blood test but had a positive biopsy, so I am definately a Celiac. That new "fad" is saving my life. I still have some of the problems you have and they don't know why, I have had a colonoscopy, fun fun, but that came out clean. So they said its IBS. I originally lost a lot of weight before diagnosis, which took 9 months and about another year of trial and practice to start healing. Now all of a sudden I gave put on over 50 lbs. They have no idea why. Thyriod has been tested and tested and tested TSH 3 and 4 as well. So they diagnoised me with chronic fatigue syndrom and since I don't exercise a lot thats why I put on the weight. What BS. I do walk my pup all the time. I run a play with her ever single day. I am not eating enough to keep this weight on and I am so uncomfortable with the weight. Hurting my knees and ankles not to mention I had to get new clothes. I went from a size 6 to 14 in 6 months. I even had my gall bladder out. I am sick of tests. Taking a break. Seem to be sort of stable in weight.

The fatigue is killing me (literally) but I am so tired all the time and now that I am fat I don't want people to seem me. I am very interested in what the doctors say about you. Maybe it can help me. All these symptoms happened after diagnosis except for the gall bladder. Even have restless Legs. Thats my latest, Yipee. I am desperate as well for I am unable to work.

Go for the thyriod test and the, up the but test. Have them allergy test you for other foods a well. Or get a new doctor who does not believe eating gluten-free is a "fad". I would love to give her a piece of my mind.

Vented enough and not really helpfull. Good Luck to you. I will be following this tread.
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#18 kswan08

 
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Posted 25 July 2012 - 02:45 PM

I checked on my meds and they are gluten-free. I emailed my doctor about the blood work and she relied with a vague answer. So, I have no idea what the actual blood test looked at (how extensive).
As a person just starting out on this journey - and not having fun :-/ I wondered if there are any good book guides. I just bought Gluten Free Grocery Shopping Guide by Matison and took out 6 cookbooks from the library. I hate to cook .... but I hate feeling this pain more.
I have never been on a forum before so navigation is confusing for me. If there is a section about literature, etc...I will find it!
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#19 IrishHeart

 
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Posted 25 July 2012 - 03:17 PM

I also do not eat red meat, unless I can verify that it has no added solution injected to it, had a couple of bad expiriences with pot roasts, when I checked, found out that they added injected a "solution" to keep the meat looking pink, and it contained a wheat derivative.


I have never heard of a Pot roast with "injected solutions" that contain wheat. This is a disturbing thought....can you tell us what product this was.... so we will know? thanks!
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"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


#20 IrishHeart

 
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Posted 25 July 2012 - 03:25 PM

I won't see this new doc until after I have had the colonoscopy - mainly b/c it's already scheduled and I hate to lose my spot. I am thinking I should have an endoscopy too since I've learned that that is the only true way to be diagnosed with Celiac (is this true?).

I am allergic to fresh fruit. If I eat a lot of veggies I get sick fairly quickly (goes through me in a flash). I can't eat salad at all anymore b/c I can't keep it in me.



No, hon...an endoscopy will NOT diagnose you....you need to be (1)eating gluten and (2) have a BIOPSY for a celiac DX. but you said you will not do this.


This "fast loss of food"....This means you are not ABSORBING.

Allergies are very different from food intolerances.

**EDITED by IH 7/26/12
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"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


#21 IrishHeart

 
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Posted 25 July 2012 - 03:27 PM

If there is a section about literature, etc...I will find it!



please start here?

http://www.celiac.co...ewbie-info-101/
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"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


#22 Gemini

 
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Posted 26 July 2012 - 06:49 AM

I have never heard of a Pot roast with "injected solutions" that contain wheat. This is a disturbing thought....can you tell us what product this was.... so we will know? thanks!


I have also never heard of any beef being injected with a solution and I have been gluten-free for 7 years. I think that anyone new to this should not be worried about beef in general. Unless you are buying something marinated, fresh beef is not a concern.
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#23 justlisa

 
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Posted 26 July 2012 - 10:32 AM

I've been buying (and will continue to) local, grass-fed beef... But, I have to say...the while injected-beef thing sounds really awful... I'd like to know if it's true and, if so, where and what beef?
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#24 tom

 
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Posted 26 July 2012 - 11:51 AM

No, hon...an endoscopy will NOT diagnose you....you need to be (1)eating gluten and (2) have a BIOPSY for a celiac DX. but you said you will not do this.
...

The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".
An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)
With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.
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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

#25 kswan08

 
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Posted 26 July 2012 - 02:39 PM

I was saying that I thought going back on gluten might "kill" me b/c I am so recently off of it and still feeling so sick. I am HAPPY to have an endoscopy, knowing that I have to go back on gluten in order to get a dx. I think you are saying that the biopsy needs to be specific for celiac, right? I know I don't have Crohn's - my symptoms don't follow that of Crohn's at all. I'm agreeing to colonoscopy because I'm 55 and never had one. It's time. And, I'm clearly having problems.
So, if I go back on gluten, have an endoscopy with a biopsy specific to celiac - will that lead to a diagnosis or are there false negatives in a biopsy too? How long should I be back on gluten. Someone said at least 3 weeks. I've only been off gluten for 3 weeks so I am likely still showing signs in my gut.
I have been allergic to fresh fruit since I was 14 years old. While I have other food sensitivities, the fruit response is clearly allergy. The fast loss of food is all the other food that I was eating and couldn't keep in me. I am just learning about malabsorption. I just don't know why I am gaining weight instead of losing. Malabsorption should lead to weight loss, right? I'm feeling vulnerable, a bit scared and definitely abused by my PCP who treats me terribly, even though this is the first time I have ever complained about anything!



No, hon...an endoscopy will NOT diagnose you....you need to be (1)eating gluten and (2) have a BIOPSY for a celiac DX. but you said you will not do this.


This "fast loss of food"....does mean you are "allergic" to fruit or veggies. This means you are not ABSORBING.

Allergies are very different from food intolerances.


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#26 kswan08

 
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Posted 26 July 2012 - 02:47 PM

How infuriating is it that my PCP called gluten-intolerance a "fad"!! I'm still steaming over that! She's giving me a hard time about getting the biopsy done b/c the blood work was negative. I'm not taking no for an answer.
I don't exercise because I'm so bloody tired AND because every time I exercise my stomach goes into an uproar and I get sick. I'm a busy woman and never just sit at home, but no formal exercise routine. Makes me feel ill. My weight (went from size 8 to 12) bothers me greatly. I don't even feel like I'm in my own body and it's upsetting. I had an appendectomy last year. Since then my gastric problems become worse which is interesting. Can't help but wonder why my appendix got infected and then why the rest of my gastric system got worse. I've always had allergies and IBS (mostly untreated other than diet changes) but all that was a cake-walk compared to what I'm experiencing now.
I am hoping to change doctors after the summer. I am just trying to get these tests done first as she is with the Beth Israel Hospital and they have an excellent GI/Celiac program there.
I'll keep you posted :-)


I will put my 2 cents in too. I had a negative blood test but had a positive biopsy, so I am definately a Celiac. That new "fad" is saving my life. I still have some of the problems you have and they don't know why, I have had a colonoscopy, fun fun, but that came out clean. So they said its IBS. I originally lost a lot of weight before diagnosis, which took 9 months and about another year of trial and practice to start healing. Now all of a sudden I gave put on over 50 lbs. They have no idea why. Thyriod has been tested and tested and tested TSH 3 and 4 as well. So they diagnoised me with chronic fatigue syndrom and since I don't exercise a lot thats why I put on the weight. What BS. I do walk my pup all the time. I run a play with her ever single day. I am not eating enough to keep this weight on and I am so uncomfortable with the weight. Hurting my knees and ankles not to mention I had to get new clothes. I went from a size 6 to 14 in 6 months. I even had my gall bladder out. I am sick of tests. Taking a break. Seem to be sort of stable in weight.

The fatigue is killing me (literally) but I am so tired all the time and now that I am fat I don't want people to seem me. I am very interested in what the doctors say about you. Maybe it can help me. All these symptoms happened after diagnosis except for the gall bladder. Even have restless Legs. Thats my latest, Yipee. I am desperate as well for I am unable to work.

Go for the thyriod test and the, up the but test. Have them allergy test you for other foods a well. Or get a new doctor who does not believe eating gluten-free is a "fad". I would love to give her a piece of my mind.

Vented enough and not really helpfull. Good Luck to you. I will be following this tread.


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#27 kswan08

 
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Posted 26 July 2012 - 02:52 PM

The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".
An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)
With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.


Thanks, Tom. I am hoping the endoscopy will be scheduled tomorrow. My PCP told me to go back on gluten but I'm waiting to get the date of endo so I don't suffer too soon. I have been on gluten-free for 3 weeks and still have a lot of pain and bloating. Eating anything hurts right now. But I'm better than I was 3 weeks ago. I don't have a GI doctor yet, but the one who I am scheduled to have colonoscopy is supposed to be excellent so I'm hoping she will do the two together and then refer me to the Celiac program at same hospital where there are GI's who specialize in this.
It's the best I can hope for right now.
I guess for me the big question is - is this celiac or severe gluten-intolerance (ie. not autoimmune)? I don't think I can know that without the biopsy. Am I correct? Thanks!
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#28 kswan08

 
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Posted 26 July 2012 - 02:53 PM

I am still learning about intolerance vs allergy vs celiac. I so appreciate all of your info. Thank you!


I was saying that I thought going back on gluten might "kill" me b/c I am so recently off of it and still feeling so sick. I am HAPPY to have an endoscopy, knowing that I have to go back on gluten in order to get a dx. I think you are saying that the biopsy needs to be specific for celiac, right? I know I don't have Crohn's - my symptoms don't follow that of Crohn's at all. I'm agreeing to colonoscopy because I'm 55 and never had one. It's time. And, I'm clearly having problems.
So, if I go back on gluten, have an endoscopy with a biopsy specific to celiac - will that lead to a diagnosis or are there false negatives in a biopsy too? How long should I be back on gluten. Someone said at least 3 weeks. I've only been off gluten for 3 weeks so I am likely still showing signs in my gut.
I have been allergic to fresh fruit since I was 14 years old. While I have other food sensitivities, the fruit response is clearly allergy. The fast loss of food is all the other food that I was eating and couldn't keep in me. I am just learning about malabsorption. I just don't know why I am gaining weight instead of losing. Malabsorption should lead to weight loss, right? I'm feeling vulnerable, a bit scared and definitely abused by my PCP who treats me terribly, even though this is the first time I have ever complained about anything!


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#29 IrishHeart

 
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Posted 26 July 2012 - 02:54 PM

The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".
An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)
With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.



Tom, I did NOT discourage an endoscopy. :o I said she needs an endoscopy with BIOPSY so she can get an accurate DX. I agree she needs BOTH--colonoscopy and endoscopy with biopsy--if on the same day, all the better. I was trying to clarify that a biopsy will be a more accurate DX, that's all.
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"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 26 July 2012 - 03:06 PM

Thanks, Tom. I am hoping the endoscopy will be scheduled tomorrow. My PCP told me to go back on gluten but I'm waiting to get the date of endo so I don't suffer too soon. I have been on gluten-free for 3 weeks and still have a lot of pain and bloating. Eating anything hurts right now. But I'm better than I was 3 weeks ago. I don't have a GI doctor yet, but the one who I am scheduled to have colonoscopy is supposed to be excellent so I'm hoping she will do the two together and then refer me to the Celiac program at same hospital where there are GI's who specialize in this.
It's the best I can hope for right now.
I guess for me the big question is - is this celiac or severe gluten-intolerance (ie. not autoimmune)? I don't think I can know that without the biopsy. Am I correct? Thanks!

The longer the period of gluten free eating, the less chance of a positive endoscopic biopsy. That is to say, that gluten-loading just before the endoscopy is not enough to do the trick. The lack of a positive biopsy does not indicate that you do not have celiac; it just means that a) you have done sufficient healing since stopping gluten for it to not show clearly any more, B. they did not biopsy a celiac patch, or c) you have not yet done enough damage to your GI tract - OR that you are what is currently defined as non-celiac gluten intolerant. And there is no reason not to do celiac endoscopic biopsies while they are doing the colonoscopy.
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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"

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

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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