Noone Else To Talk To. A little sad. Need some advice.
#1
Posted 01 June 2009 - 07:31 PM
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)
DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
#2
Posted 02 June 2009 - 03:38 AM
"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)
#3
Posted 02 June 2009 - 03:51 AM
#4
Posted 02 June 2009 - 04:01 AM
ravenwoodglass, on Jun 2 2009, 07:38 AM, said:
The amytripyline was originally prescribed for the pain since his doctor said it has had some good results in cancer patients. It did have the added benefit at first to help his mood. But unfortunatly now it is not helping. I doubt he would even consider celiac testing and I don't think it is a problem anyway, but who knows. He has a strong family hx on his father's side of mental ilness and such. His sister was diagnosed bipolar when she was a child. Don't know if that could be playing a role. It took me 6 months to convince him that he needed to go to the doctor and get his blood pressure checked. They have had a hard time getting it down enough so they recently added the second bp pill. It has worked. What bothers me is that at 33 yrs old he is on two bp meds. His Pa(he won't see the regular dr) thinks his bp is hard to manage because he is too high strung. I want him to see a real doctor (I'm not fond of his PA) so he can have a battery of blood work done, but he won't go. I think he thinks that one day he will wake up and it will all go away. He tried zyban to quit smoking over 8 years ago and did not have a good reaction to it. He said it made him think very strange thoughts and threw it away. We have been hesitant to try antidepressents since. The one he is on now does not seem to have that effect. Any kind of medicine to "relax" you tends to have the opposite effect. Valium for instance triggers migraines and he gets so hyper and very "uninhibited" and he usually is a very private person. I have mentioned recently that we might need to speak to a counsler, but he is hesitant since this is a private matter. I think this would be a good idea. I have found a specialist at UT in Knoxville that I would like for him to see. He was rated in the top 10 doctors in the south and is a Urologist so we will see. I appreciate your kind thoughts. Thanks.
Edit: The pain he gets in his abdomen is related to the procedure. Without going into great detail, but it is related. However I think he should have some type of scan to see what is going on in there. With all the bleeding who knows what it left in there.
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)
DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
#5
Posted 02 June 2009 - 04:07 AM
FMcGee, on Jun 2 2009, 07:51 AM, said:
Yes I have told him how I feel. Things still do work, but unfortunately rather quickly. I think it is a mental thing that if he gets it over with quickly then he won't have to deal with any pain. His doctor told him the more he does things the less back pressure from epidimal congestion he would have. I have asked him if I am the problem and if he does not find me attractive anymore and he tells me that I'm not the problem. He still will cuddle with me and we spend time that way, so I don't think he is totaly withdrawn. Thanks.
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)
DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
#6
Posted 02 June 2009 - 07:13 AM
Roda, on Jun 2 2009, 05:01 AM, said:
Edit: The pain he gets in his abdomen is related to the procedure. Without going into great detail, but it is related. However I think he should have some type of scan to see what is going on in there. With all the bleeding who knows what it left in there.
It might help you a bit to get some counseling to deal with this on your own. You may want to consider this. The family history of mental issues could very well be associated with neuo predominent celiac disease. I should also note that for my famiy the meds that we were typically prescribed made us worse and in the case of my children caused some very dangerous sideeffects on their mental stability. The neuro effects of celiac had more of an impact on the lives of my family, parents, children and even my husband than GI issues. The mental effects can rear their heads for years before any GI symptoms show up. For myself those issues appeared almost 30 years before GI issues became any thing that seemed out of the norm. As I said it may not be an issue for him but if you can get him to get this ruled out it would be a good idea. The urologist can order testing for his vitamin and mineral levels and also do testing for anemias while he is there. If your husband is reluctant to you being with him during the exam you can write a note to the doctor letting him in on the full range of impact that he has had since the surgery. Because of the privacy regs he wouldn't be able to discuss your husbands findings without his permission but you can contact the doctor without issue. If the doctor decides that levels testing are needed they can be ordered on the lab slip without your husband being told in detail the tests that are being run.
"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)
#7
Posted 03 June 2009 - 04:44 PM
Also, I hate to exercise, but am more likely to do so if someone says lets walk tonight and then when it is time hands me my shoes and walks with me. Maybe try that with swimming.
#8
Posted 03 June 2009 - 05:56 PM
SGWhiskers, on Jun 3 2009, 08:44 PM, said:
Also, I hate to exercise, but am more likely to do so if someone says lets walk tonight and then when it is time hands me my shoes and walks with me. Maybe try that with swimming.
Welbutrin is out it is the same as zyban and it does not agree with him. I have offered to swim with him but he wants to find something he can do by himself. He keeps mentioning kyaking. Hope he can find his niche.
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)
DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
#9
Posted 03 June 2009 - 08:36 PM
Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06
Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)
Celiac.com - Celiac Disease Board Moderator
#10
Posted 04 June 2009 - 06:02 AM
My first suggestion: couples sex counseling. I went for three years, and it was a lot of work (mental), but things are doing better - not great, just better.
My second suggestion: read all you can about chronic pain. Honestly, his reaction does *not* sound abnormal, and has nothing whatsoever to do with you at all. Chronic pain, particularly pain that affects that area and limits your sex life, is a HUGE impact on the psyche. I would bet that, though he might admit it, he feels like less of a man, less of a human, pretty much broken, and may feel like he doesn't deserve a marriage any more. And, I must repeat, this has NOTHING to do with you - which also means that you can't really help him fix it. You can be supportive in his attempts to fix it, but the more you focus on "helping him get over this" and "helping to work on the problem", he may well just feel more broken and less deserving.
It's hard to convey how very fundamentally broken this can make a person feel. Not just handicapped, but not-fully-human any more. You lose (in your mind, because of the pain), the ability to do something that is almost definingly human, something that we all take for granted, and something that is expected as just part 'of the bills' in marriage. (Yeah, that sounds a bit heavy handed, but it really is a "I have this responsibility, and I can't meet it" sort of thing. I would imagine that it may quite possibly be harder for some men than women, from a cultural perspective.)
Imagine the following: there's a hot burner on the stove. You're asked by someone you love very much to place your hand on the hot burner, and keep it there. If you don't... well, you feel you might lose that person you love very much. So you put your hand there, and keep it there. And it burns. It causes searing pain that is almost more than you can stand. But you do it for your loved one. And then, every now and again, they ask you to do it again. You know what it's going to feel like, you know that it's going to cause you extreme pain. You try to do it, though, because your loved one expects it of you. Really, everyone expects you'll burn your hand repeatedly for your loved one. And soon, every time they ask you, you can already feel the pain, you already know that you'll be driven nearly out of your mind with the pain. And you are scared - scared of the pain, scared of turning down your loved one and disappointing them and loosing them. So you're stuck between two equally horrifying things. At some point, it's nearly crippling.
This isn't the sort of thing I'd suggest working out alone, or just with medication. And this isn't a short journey - I was in counseling for 3 years, and 4 years after that, we're still not back to before any of this started, but we're in a place that we are ok with, with is all that matters.
Until you can make progress, find other ways to be intimate. It may be hard, particularly at first, for him to be ok with ignoring what's broken, and doing things a different way, but it's an important part of the process.
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA
#11
Posted 04 June 2009 - 07:41 PM
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)
DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
#12
Posted 05 June 2009 - 09:17 AM
Roda, on Jun 4 2009, 08:41 PM, said:
There is another possibility with the continued pain. I have had something called Reflex Sympathic Dystrophy set in after leg surgery. It caused intense burning pain. You may want to find out if that may be a possiblity also.
"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)
#13
Posted 05 June 2009 - 12:21 PM
ravenwoodglass, on Jun 6 2009, 05:17 AM, said:
Interesting that you have Reflex Sympathic Dystrophy. My gluten intolerant sister also developed this in her arm after breast surgery and lymph node removal. I had never heard of it before.
"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
#14
Posted 05 June 2009 - 03:27 PM
mushroom, on Jun 5 2009, 01:21 PM, said:
The doctor said it was a reaction of the sympathetic nervous system to the surgery. My knee worked great but the pain from the RSD and the loss of muscle mass in the leg were shocking to the doctor. My leg looked normal before the surgery but when I had the stitches removed just a week or so later my leg looked like a stick. Fortunately with PT and meds it did resolve but it did take some time. I wonder if the bad neuro involvement from my undiagnosed celiac had something to do with it but I will never know.
"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)
#15
Posted 02 July 2009 - 01:30 AM
ravenwoodglass, on Jun 5 2009, 01:17 PM, said:
How did the doctor treat the RSD? I was watching something and heard that hyperbaric oxygen therapy has been shown to help break the pain cycle. I am wondering how and from whom I could find more information on this even though his problem is not in his extremities. Still valid, it is a chronic pain problem.
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
DS2(age 7):
celiac disease(positive IgA tTG, no biopsy- 11/2010)
DS1(age 11):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
- ← Previous Topic
- Gab/Chat Room - To Discuss Anything BUT Celiac Disease / Gluten-Free Diet
- Next Topic →

Help












