Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Losing Hope...


  • Please log in to reply

135 replies to this topic

#31 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 26 July 2012 - 03:08 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?


Yes, that is what I was trying to say. But I see MUSHROOM has just posted, so I will not repeat it all. :)
  • 1

"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


Celiac.com Sponsor:

#32 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 26 July 2012 - 03:18 PM

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!


Okay, you have fruit allergies IN ADDITION to a gluten problem --I see. That was not clear to me before this post. I thought you meant all food was "passing through you". Sorry.

Losing food could very well be malabsorption, yes. IMHO

I know how hard it is to feel this way and not be taken seriously. :(

I think you are wise to have both procedures done --if it will make you feel better to have a sense of what "may be going on down there".

So many people have negative or erroneous results and the doctors assume that gluten is not a problem and then, people continue to have issues anyway.

NCGI can do serious damage, too.
  • 1

"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


#33 Gemini

 
Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,154 posts
 

Posted 27 July 2012 - 10:19 AM

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.



Well, Tom....let me enlighten you on why some people would refuse an endo. When I was diagnosed, I was so violently ill, I could not hold food down and was beyond nauseous so doing any tests that would involve putting a scope down your throat was really not an option. I also have Sjogren's Syndrome and have severe dry mouth and throat. That can make doing an endo dicey. I failed every diagnostic test by huge numbers, have a double DQ2 Celiac gene and when I went gluten free, the explosive, watery Big D completely stopped after 3 days on the diet. Pretty miraculous considering I was down to 97 pounds and as dehydrated as you get. I had my diagnosis.

As I have said before, if a person does not recover fully on the gluten-free diet or develops other symptoms that warrant a scoping, so be it. But for those of us who recovered well, albeit over a period of time, and feel well to this day and have had a complete resolution of symptoms, the scope is not necessary....unless you want to have one.
  • 1

#34 eatmeat4good

 
eatmeat4good

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,699 posts
 

Posted 27 July 2012 - 12:45 PM

Kswan08,

I started doing research on vitamin deficiencies and weight gain because if you are Celiac you can either gain or lose weight due to malnutrition. I got tired and stopped at vitamin D, vitamin C and calcium deficiencies, all of which can cause you body to hang on to weight. There are other vitamins and mineraldeficiencies that also cause this.

If you cannot eat fruit and are having difficulty with vegetables, and you are not absorbing correctly, the vitamin deficiencies could be contributing to your weight gain. I believe this is what happened to me. Once I went gluten free and started supplementing everything about my metabolism stabilized and I started losing weight.

Ask for vitamin levels to be checked and start supplements.
Here is some information on Vitmain C deficiency

http://www.nlm.nih.g...icle/002404.htm

Oh yeah, and B12 too.
http://www.webmd.com...symptoms-causes
  • 0
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#35 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 27 July 2012 - 01:16 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".


I'm sorry, but it is my understanding (and my own unfortunate experience that had me dying a slow death for 2 years ) that an endoscopy ALONE will NOT DX celiac.

She said she was having an endo scheduled. I suggested she needed a biopsy done during that endo.

She cannot get the doctor to take her seriously --so NO, I would not "assume" that the biopsy is a "given".

It was not a given in my case, but I did not find that out until 2 years later that it was not done, when I saw the report from the doctor when I secured all my medical files and knew what the hell was going on inside me and what he SHOULD have done. I was so sick and incapacitated by then, the new GI said "what the hell was he thinking NOT biopsying back then?"

Why are you arguing with me about this anyway? :unsure: I don't get it.
  • 3

"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


#36 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 27 July 2012 - 01:28 PM

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.



Here's what I was thinking... I would hold off to start eating gluten until I am a month away from endo. I still haven't heard anything. My PCP called me yesterday and said, "I doubt someone at age 55 would suddenly become a celiac but I will let you have an endoscopy. You need to have an abdominal CT scan to see if you have a mass or cancer." Such kindness is overwhelming .. grrr. As if I'm not scared enough. Same doctor that said I didn't have Vit D deficiency until I insisted on a test. And am on my third round of 50 thousand units of D b/c my body is not "holding onto the D." She refused testing me for any other deficiencies stating it wasn't necessary. Sigh.
So .. I am still bloated, today had cramping, wake in the night feeling nauseous and my wonderful doctor doesn't really care. Why would these symptoms lead to thoughts of cancer and not gluten intolerance or celiac?
Also, why am I still suffering with bloating and some pain despite not eating gluten or lactose? Some have mentioned my gut needing healing time, others that I may still be ingesting gluten or other food that is causing problems without knowing it. What I hope you can tell me is should I feel 100% better three weeks off gluten and lactose or is it common to still feel symptomatic. I felt better last week than I do this. I am discouraged and scared. I am grateful for the support you have all shared with me.
  • 0

#37 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 27 July 2012 - 01:31 PM

Vitamin D can cause weight gain? If I'm not absorbing properly it can cause weight gain? How can I stabilize my system? Should I take the vitamins or not take them? I think my body is in trouble and this has been "brewing" for a long time....


Kswan08,

I started doing research on vitamin deficiencies and weight gain because if you are Celiac you can either gain or lose weight due to malnutrition. I got tired and stopped at vitamin D, vitamin C and calcium deficiencies, all of which can cause you body to hang on to weight. There are other vitamins and mineraldeficiencies that also cause this.

If you cannot eat fruit and are having difficulty with vegetables, and you are not absorbing correctly, the vitamin deficiencies could be contributing to your weight gain. I believe this is what happened to me. Once I went gluten free and started supplementing everything about my metabolism stabilized and I started losing weight.

Ask for vitamin levels to be checked and start supplements.
Here is some information on Vitmain C deficiency

http://www.nlm.nih.g...icle/002404.htm

Oh yeah, and B12 too.
http://www.webmd.com...symptoms-causes


  • 0

#38 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 27 July 2012 - 01:46 PM

My PCP called me yesterday and said, "I doubt someone at age 55 would suddenly become a celiac but I will let you have an endoscopy. You need to have an abdominal CT scan to see if you have a mass or cancer." Such kindness is overwhelming .. grrr.


LET you have one? :rolleyes: Again, make sure there is a BIOPSY done as well.

Oh for Pete's sake!!...this idiot PCP doesn't know what the hell he is talking about! he needs to read a medical journal once and awhile. It is this kind of thinking that kept most of sick and dying. :angry:

Do you know how many people in their 50s, 60s, & 70's and older are FINALLY Dxed with celiac??

I was 53. And my PCP,a man with 3 celiac kids, left me unDXed for 12 years. He had to apologize to me, citing "well, I just did not know how it manifests in adults".
<_<

Please, read this article and print it off for this (*&^@)) can't say what I want to-
Hon, seriously, you are getting the same runaround most of us got for years. You do not want to end up as deathly ill as I was.

Are you in upstate NY by any chance? I will walk you into my GI guy. You deserve better.

http://www.livingwit...acs-2720-1.html
  • 4

"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


#39 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 27 July 2012 - 01:50 PM

Also, why am I still suffering with bloating and some pain despite not eating gluten or lactose? Some have mentioned my gut needing healing time, others that I may still be ingesting gluten or other food that is causing problems without knowing it. What I hope you can tell me is should I feel 100% better three weeks off gluten and lactose or is it common to still feel symptomatic. I felt better last week than I do this. I am discouraged and scared. I am grateful for the support you have all shared with me.


No, you should not feel 100% better three weeks off gluten or lactose. You would be an extremely lucky soul if you did. Many of us take years to completely heal, if we ever do. If you are continuing to feel better as time passes, then you are on the right path and should be encouraged and delighted :) The path to recovery can be an up-and-down one, better one week, not so good the next, but with a general trend upward. Sometimes, unfortunately, another food intolerance may rear its head, one that has been masked by the gluten response previously and something to look out for, but you may be lucky enough to avoid this problem. And every now and then some gluten is going to find its way onto your dinner plate - or in a medication or some other unexpected place. And you will know it, but it's not the end of the world.

Be encouraged that there is light at the end of the tunnel. Keep the faith.
  • 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

Celiac.com - Celiac Disease Board Moderator

#40 eatmeat4good

 
eatmeat4good

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,699 posts
 

Posted 27 July 2012 - 01:58 PM

Vitamin D can cause weight gain? If I'm not absorbing properly it can cause weight gain? How can I stabilize my system? Should I take the vitamins or not take them? I think my body is in trouble and this has been "brewing" for a long time....



Oh no!

What I was saying is...

Vitamin Deficiencies can cause weight gain.
By all means take your vitamins.

My post was about being deficient and that results in the weight gain.
You are very deficient in D and that could have contributed to your weight gain. Supplementing will help you stabilize. I also think you are probably deficient in C due to not being able to eat fruit or tolerate vegetables.

The links I provided were about what can happen to your body when you deficient in certain vitamins and minerals.
It may all correct itself once you are absorbing and supplementing.

While you are pursuing medical care, take your vitamins!

http://www.medicalne...cles/247056.php
  • 0
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#41 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,342 posts
 

Posted 27 July 2012 - 03:08 PM

kswan, SOY can make you bloat like crazy! Many celiacs have problems with soy so if you are eating anything containing soy you can try elimiating that from your diet & see what happens. Soy makes me bloat like you wouldn't believe --- like I'm 15 months pregnant!!!! I will bloat so bloat so badly that I literally feel like my abdomen/stomach/intestines are going to explode & there will little pieces of me splattered all over the place. I'm sorry if that's too graphic but that is exactly the way soy bloat can make me feel.

Personally, I would take the advice of IrishHeart, mushroom, eatmeatforgood, Gemini, bartful, FernW, justlisa, GFinDc, MitiziG, beachbirdie, TiaMichi2 & jestgar. These people know what they are talking about. And they can get very passionate about it but that is only because they have been at death's door from celiac disease & doctors who don't know what they are doing/talking about OR have seen enough on this board of people who have gone on needlessly suffering & doing damage to their bodies b/c of inept doctors. The very same kind of doctors who think celiac is a fad. The very same doctors who think "you don't get celiac at age 50" --- actually you usually don't "get" it at 50 --- it's BEEN there for years & years & years UNDIAGNOSED.

*edited to add jestgar*

Edited by squirmingitch, 27 July 2012 - 04:57 PM.

  • 1

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.

 


#42 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 27 July 2012 - 03:30 PM

Yes, "let me have one"! I am changing doctors but the one I want is on maternity leave until September. I figured it was best to stay with this one until then.
I did specifically request a biopsy for celiac be done and stated that that would be the purpose of the endo. I will follow-up with the GI doc when the appointment is scheduled. The fact that I can't get my doctor to push this through is frustrating the heck out of me!
At this point, I'm wishing I lived near one of you and could go to a highly recommended doc who wouldn't think I was "exaggerating."
Thanks for the article...




LET you have one? :rolleyes: Again, make sure there is a BIOPSY done as well.

Oh for Pete's sake!!...this idiot PCP doesn't know what the hell he is talking about! Read a medical journal once and while. It is this kind of thinking that kept most of sick and dying. :angry:

Do you know how many people in their 50s, 60s, & 70's and older are FINALLY Dxed with celiac??

I was 53. And my PCP,a man with 3 celiac kids, left me unDXed for 12 years. He had to apologize to me, citing "well, I just did not know how it manifests in adults".
<_<

Please, read this article and print it off for this asshat and/or get yourself a new doctor.
Hon, seriously, you are getting the same runaround most of us got for years. You do not want to end up as deathly ill as I was.

Are you in upstate NY by any chance? I will walk you into my GI guy. You deserve better.

http://www.livingwit...acs-2720-1.html


  • 0

#43 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 27 July 2012 - 03:36 PM

Okay, thanks for clarifying, I was confused! I have had severe vitamin deficiencies for years and have had to be treated. I have trouble with C - makes me sick (surprise!). Any forms that will not create reaction, allergy or vomiting? I don't know how to get my doc to test me for vitamin deficiencies. She's increasingly hostile because I'm "pushing" issues right now. It didn't look good for her that she refused my vitamin D test and when I finally pushed hard enough, she realized I was severely deficient. This is the same doctor who put me on two heart med's - and when I had a reaction and called her - said, "Why are you taking Nadalol and who prescribed that! You should not be on that!" OMG! I knew then it was time to leave her, but it's not easy finding a PCP worth their salt.
Thanks for the link and helping me to understand and hang in there....




Oh no!

What I was saying is...

Vitamin Deficiencies can cause weight gain.
By all means take your vitamins.

My post was about being deficient and that results in the weight gain.
You are very deficient in D and that could have contributed to your weight gain. Supplementing will help you stabilize. I also think you are probably deficient in C due to not being able to eat fruit or tolerate vegetables.

The links I provided were about what can happen to your body when you deficient in certain vitamins and minerals.
It may all correct itself once you are absorbing and supplementing.

While you are pursuing medical care, take your vitamins!

http://www.medicalne...cles/247056.php


  • 0

#44 kswan08

 
kswan08

    Community Member

  • Advanced Members
  • PipPipPip
  • 35 posts
 

Posted 27 July 2012 - 04:24 PM

Oh - one more question. The PCP told me to take Prilosec twice a day as well as Align twice a day. Expensive, not covered by insurance so I just want to know what the consensus here is. I've been taking both for 2+ weeks. Reflux is better but not sure what the probiotics are doing, if anything.
  • 0

#45 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 27 July 2012 - 04:26 PM

Yes, "let me have one"! I am changing doctors but the one I want is on maternity leave until September. I figured it was best to stay with this one until then.
I did specifically request a biopsy for celiac be done and stated that that would be the purpose of the endo. I will follow-up with the GI doc when the appointment is scheduled. The fact that I can't get my doctor to push this through is frustrating the heck out of me!
At this point, I'm wishing I lived near one of you and could go to a highly recommended doc who wouldn't think I was "exaggerating."
Thanks for the article...



You are welcome, hon.

You are doing all you can.

None of us think you are exaggerating! :)
  • 3

"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





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: