Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Need To Talk


  • Please log in to reply

10 replies to this topic

#1 Dozey

 
Dozey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 87 posts
 

Posted 06 May 2013 - 12:02 AM

Hope no one minds me having a ramble, just feel the need to talk to someone. I tell myself a dozen times a day that I'm not dying and not going mad, it just feels like I am. I feel like I'm stuck in neutral and can't get into gear. I'm tired, weak, lethargic, fearful and just feel ill generally. I have DP on and off and my life seems so different to what it used to be I don't know what's normal anymore. Some days it's a struggle to get out of bed even to go to the loo! Other days I can manage a short walk with my husband and dog though I am slightly agoraphobic, probably from being bed bound a few months ( very low b12 and pernicious anaemis). I know if it's Celiac that answer is to go gluten free, but I am still waiting results which I am fairly certain is going to be negative. Sometimes I think I can't take the anxious feelings anymore, they overwhelm me, but I'm not suicidal! I tell myself to be patient and it will all get better, but it is very hard. I'm not suffering from depression but I do get depressed with always feeling ill. I don't want anti depressants which seems the doctors answers to everything these days. I just want my life back. Thank you for listening.
Jo
  • 0

Celiac.com Sponsor:

#2 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,220 posts
 

Posted 06 May 2013 - 04:06 AM

Hi Jo,

 

I am sure you are not suffering from a lack of anti-depressants.  It is natural to feel sad and even really sad when you are having deep troubles.  I agree to avoid the drugs.

 

I hope your test results will be surprisingly definitive, or that the gluten free diet trial will be healing.  I hope that Someone will hold your right hand and be with you through everything.

 

Sorry, you are up at 3 am.  Hopefully, you can sleep late now.

 

Diana


  • 0

#3 Dozey

 
Dozey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 87 posts
 

Posted 06 May 2013 - 04:35 AM

Hi Jo,
 
I am sure you are not suffering from a lack of anti-depressants.  It is natural to feel sad and even really sad when you are having deep troubles.  I agree to avoid the drugs.
 
I hope your test results will be surprisingly definitive, or that the gluten free diet trial will be healing.  I hope that Someone will hold your right hand and be with you through everything.
 
Sorry, you are up at 3 am.  Hopefully, you can sleep late now.
 
Diana


Hi Diana and thank you for your reply. YesI have a lot of support from my husband and son, and even my dog and cat stay close when I need them!
Jo
  • 0

#4 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,791 posts
 

Posted 06 May 2013 - 04:55 AM

Sorry you are struggling so much. I think once the tests are done and you can do a gluten free trial that you will see a difference but it may take some time. Hopefully the agoraphobia will be relieved once you are feeling better. If it doesn't get better don't be afraid to seek help for it.  Glad to hear you have support at home as that can make  a world of difference. Having a dog was very helpful for me, along with antianxiety meds (something you hopefully won't need).  We started with short walks and drives and within a few months we were able to walk a couple miles from my home or car without any panic attacks.

Doctors also tried to push me onto antidepressants and it took some time to find one who realized I wasn't depressed I was sick and suffering from anxiety because of the severity of my reactions to gluten.

I hope you are feeling better soon. Hang in there.


  • 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)

#5 Dozey

 
Dozey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 87 posts
 

Posted 06 May 2013 - 05:04 AM

Sorry you are struggling so much. I think once the tests are done and you can do a gluten free trial that you will see a difference but it may take some time. Hopefully the agoraphobia will be relieved once you are feeling better. If it doesn't get better don't be afraid to seek help for it.  Glad to hear you have support at home as that can make  a world of difference. Having a dog was very helpful for me, along with antianxiety meds (something you hopefully won't need).  We started with short walks and drives and within a few months we were able to walk a couple miles from my home or car without any panic attacks.
Doctors also tried to push me onto antidepressants and it took some time to find one who realized I wasn't depressed I was sick and suffering from anxiety because of the severity of my reactions to gluten.
I hope you are feeling better soon. Hang in there.


Thank you. Some days I don't feel so bad and others terrible. I am doing the same as you did, short walks and rides in the car. My dog is so loyal, she stays with me nearly all the time, and when she goes out with my husband the cat comes and gets on my knee. It's almost as though they know.
Jo
  • 0

#6 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,162 posts
 

Posted 06 May 2013 - 12:32 PM

Hi Dozey,

 

How much longer before you get the endoscopy and can go gluten-free?  After you go gluten-free things will probably start improving.  It may take a bit but if you have celiac disease or NCGI, going gluten-free is the key to improved heath.  Gluten can affect any part of our bodies, including the thinker thing.  Malabsorption (malnutrition) can also.  Basically gluten sucks for us.  There, I said it.  Try to get sleep when you can, and take it easy on yourself.  You could try some rhodiola rosea also.  It may help a little.  Avoiding caffiene and sugar may be good too.

 

I hope you feel better soon! :)


  • 1
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

#7 Nikki2777

 
Nikki2777

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 311 posts
 

Posted 06 May 2013 - 01:01 PM

If the celiac doesn't pan out, you may try going gluten-free anyway and see if it helps, but I would also reconsider your stance on anti-depressants.  I have seen many many people helped by them.  If you have any other chemical imbalance, you wouldn't think twice about remedying it with medicine.  That's what depression is.  Good luck.


  • 0

#8 Dozey

 
Dozey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 87 posts
 

Posted 06 May 2013 - 11:41 PM

Hi Dozey,
 
How much longer before you get the endoscopy and can go gluten-free?  After you go gluten-free things will probably start improving.  It may take a bit but if you have celiac disease or NCGI, going gluten-free is the key to improved heath.  Gluten can affect any part of our bodies, including the thinker thing.  Malabsorption (malnutrition) can also.  Basically gluten sucks for us.  There, I said it.  Try to get sleep when you can, and take it easy on yourself.  You could try some rhodiola rosea also.  It may help a little.  Avoiding caffiene and sugar may be good too.
 
I hope you feel better soon! :)


Hi, I am awaiting blood results and don't have an endoscopy planned. I was supposed to have one in November, but the consultant agreed that in my present state of anxiety/ agoraphobia it wouldn't be a good idea. It is an ordeal for me just getting two miles to see the doctor, so twenty three miles to have an endoscopy is out just now. Thank you for replying.
Jo
  • 0

#9 Dozey

 
Dozey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 87 posts
 

Posted 06 May 2013 - 11:44 PM

If the celiac doesn't pan out, you may try going gluten-free anyway and see if it helps, but I would also reconsider your stance on anti-depressants.  I have seen many many people helped by them.  If you have any other chemical imbalance, you wouldn't think twice about remedying it with medicine.  That's what depression is.  Good luck.


Thank you. I don't feel I am suffering from depression as such, and I resist drugs of all kinds. I was on anti ds a few years ago and never again if I can help it. I feel they are not the answer for me long term. I am hoping for some answers on Fiday with the blood results.
Jo
  • 0

#10 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,791 posts
 

Posted 07 May 2013 - 04:37 AM

Dosey have you spoken with your doctor about the anxiety issue? The doctor could have given you a small script for an antianxiety med to take before your trip for an endo. With someone else driving of course.  Interestingly celiacs who are suffering from depression often either get no relief from antidepressents or are even made worse.  It is not well known by most doctors but it is suggested that when people don't respond to the psychotropic drugs that they be tested for celiac even if they don't have GI symptoms.

 

http://www.ncbi.nlm....pubmed/12298186

 

 

 

"Coeliac disease should be taken into consideration in patients with psychiatric disorders, particularly if they are not responsive to psychopharmacological therapy, because withdrawal of gluten from the diet usually results in disappearance of symptoms"

 

Don't be afraid to ask for short term help with this issue if you need it. Hopefully the anxiety issues will be relieved with the diet so even if your test results are negative do give the diet a good strict try when all the testing you choose to do is finished.


  • 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)

#11 Dozey

 
Dozey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 87 posts
 

Posted 07 May 2013 - 04:45 AM

Dosey have you spoken with your doctor about the anxiety issue? The doctor could have given you a small script for an antianxiety med to take before your trip for an endo. With someone else driving of course.  Interestingly celiacs who are suffering from depression often either get no relief from antidepressents or are even made worse.  It is not well known by most doctors but it is suggested that when people don't respond to the psychotropic drugs that they be tested for celiac even if they don't have GI symptoms.
 
http://www.ncbi.nlm....pubmed/12298186
 
 
 
"Coeliac disease should be taken into consideration in patients with psychiatric disorders, particularly if they are not responsive to psychopharmacological therapy, because withdrawal of gluten from the diet usually results in disappearance of symptoms"
 
Don't be afraid to ask for short term help with this issue if you need it. Hopefully the anxiety issues will be relieved with the diet so even if your test results are negative do give the diet a good strict try when all the testing you choose to do is finished.


Not with this new doctor I haven't, but with previous doctors. Since suffering severe side effects from anti ds in the past I am very reluctant to take anything in that line now. I was given diazepam for nerves but all that does is knock me out and then I feel worse when I wake up with very bad DP. I seem to react badly to drugs and alcohol which also puts me to sleep, even a very small amount in lemonade!
I know it sounds whimpish but the reactions I have had have really made me frightened of taking anything. I am starting CBT on Thursday in the hopes that it can help with the anxiety and agoraphobia.
Thank for your reply.
Jo
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: