Help
I have been gluten free now for approx a year,
After a new doctor discovered my gluten intolerance.
The diet helped me so much, it helped with my rashes, anixety and depression, migrains,
and most of stomach pains, and a hored of other minor aliments.
So I have been so gratefull for some respite.
The thing is, I am concerned about somethings that have been happening recently and I am too scared to go to the doctors, in case they think I am an idiot or hypercondriac, and most times doctors just won't listen or look into problems. So I have cut myself off from doctors, because they don't seem to want to help you.. So I always try to cure myself, so I don't have to put up with them.
I had all the pointers of celiac all my life and doctors wouldn't listen to me.. they would always say, it's nothing to worry about, when ever I presented myself to their office wanting help.
Till I changed doctors but they are a natural type doctor, who believes in natural remedies, but I find the natural remedies aren't helping, I feel I may need to go to a normal doctor, but I am really scared, not of what they may tell me... because I feel more empowered with information I just don't want to go to the doctors, because they will rush me in and out and not persue or test what I believe to be wrong...
In a nut shell....
I feel I may have non hodgkins lymphomia
the glands in my the left side of my groin are very very enlarged..
Also just under my jaw and I have a numbness into my jaw and a sort of ache on the left side and swelling around that area in my jaw...
I have been having bad night sweats , which for me is unusual, because I am always cold..even on hot days. (I know the sweats could be due to menopause)
I have itchiness around the lower part of my back and in my left ear...
I am so weak and tired, needing 3 naps at least a day.
My eyes are aching.
And I just feel blahhhhhh
my bowel movements have white mucus, and even a year into gluten free and trying to eat weight gaining foods I still am not gaining and I still have to force myself to eat because I don't have any appetite
I know that if I have non hodgkins, the longer I leave it , the harder it will be to combat and it isn't something I can just cure myself of....
But on the other hand I am so scared of going to the doctors and them not looking into things and I will come out feeling ridiculed and stupid for thinking I needed help.
What do you all think?...
does anyone out there have non hogkins?... and experienced the same thing?
are all the symptoms I have written just all part of celiac and something that will pass with time?
I seriously need some view points on this....
please help me?
Do I See A Doctor
many odd things happening.
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#2
OliveBranch 
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Posted 16 November 2009 - 06:12 PM
I don't know much about lymphoma, and I don't know if all of those symptoms can come from Celiac (certainly some of them can), but it definitely sounds to me like you should see a doctor. Only that way will you have peace of mind. I can completely sympathize with your fear of not being taken seriously or simply not being listened to--this has happened to me many times, and I wish I could go the rest of my life without ever seeing a doctor again. But if you are looking for a specific diagnosis (or to prove that you DON'T have that disease), only a doctor can do it for you. You shouldn't be embarrassed at all, especially with the specific symptoms--the doctor should at least be able to tell you why your glands are swollen. Good luck to you! I hope you will be blessed with a doctor who will listen better than most of them do.
teemaree, on Nov 16 2009, 06:51 PM, said:
I have been gluten free now for approx a year,
After a new doctor discovered my gluten intolerance.
The diet helped me so much, it helped with my rashes, anixety and depression, migrains,
and most of stomach pains, and a hored of other minor aliments.
So I have been so gratefull for some respite.
The thing is, I am concerned about somethings that have been happening recently and I am too scared to go to the doctors, in case they think I am an idiot or hypercondriac, and most times doctors just won't listen or look into problems. So I have cut myself off from doctors, because they don't seem to want to help you.. So I always try to cure myself, so I don't have to put up with them.
I had all the pointers of celiac all my life and doctors wouldn't listen to me.. they would always say, it's nothing to worry about, when ever I presented myself to their office wanting help.
Till I changed doctors but they are a natural type doctor, who believes in natural remedies, but I find the natural remedies aren't helping, I feel I may need to go to a normal doctor, but I am really scared, not of what they may tell me... because I feel more empowered with information I just don't want to go to the doctors, because they will rush me in and out and not persue or test what I believe to be wrong...
In a nut shell....
I feel I may have non hodgkins lymphomia
the glands in my the left side of my groin are very very enlarged..
Also just under my jaw and I have a numbness into my jaw and a sort of ache on the left side and swelling around that area in my jaw...
I have been having bad night sweats , which for me is unusual, because I am always cold..even on hot days. (I know the sweats could be due to menopause)
I have itchiness around the lower part of my back and in my left ear...
I am so weak and tired, needing 3 naps at least a day.
My eyes are aching.
And I just feel blahhhhhh
my bowel movements have white mucus, and even a year into gluten free and trying to eat weight gaining foods I still am not gaining and I still have to force myself to eat because I don't have any appetite
I know that if I have non hodgkins, the longer I leave it , the harder it will be to combat and it isn't something I can just cure myself of....
But on the other hand I am so scared of going to the doctors and them not looking into things and I will come out feeling ridiculed and stupid for thinking I needed help.
What do you all think?...
does anyone out there have non hogkins?... and experienced the same thing?
are all the symptoms I have written just all part of celiac and something that will pass with time?
I seriously need some view points on this....
please help me?
After a new doctor discovered my gluten intolerance.
The diet helped me so much, it helped with my rashes, anixety and depression, migrains,
and most of stomach pains, and a hored of other minor aliments.
So I have been so gratefull for some respite.
The thing is, I am concerned about somethings that have been happening recently and I am too scared to go to the doctors, in case they think I am an idiot or hypercondriac, and most times doctors just won't listen or look into problems. So I have cut myself off from doctors, because they don't seem to want to help you.. So I always try to cure myself, so I don't have to put up with them.
I had all the pointers of celiac all my life and doctors wouldn't listen to me.. they would always say, it's nothing to worry about, when ever I presented myself to their office wanting help.
Till I changed doctors but they are a natural type doctor, who believes in natural remedies, but I find the natural remedies aren't helping, I feel I may need to go to a normal doctor, but I am really scared, not of what they may tell me... because I feel more empowered with information I just don't want to go to the doctors, because they will rush me in and out and not persue or test what I believe to be wrong...
In a nut shell....
I feel I may have non hodgkins lymphomia
the glands in my the left side of my groin are very very enlarged..
Also just under my jaw and I have a numbness into my jaw and a sort of ache on the left side and swelling around that area in my jaw...
I have been having bad night sweats , which for me is unusual, because I am always cold..even on hot days. (I know the sweats could be due to menopause)
I have itchiness around the lower part of my back and in my left ear...
I am so weak and tired, needing 3 naps at least a day.
My eyes are aching.
And I just feel blahhhhhh
my bowel movements have white mucus, and even a year into gluten free and trying to eat weight gaining foods I still am not gaining and I still have to force myself to eat because I don't have any appetite
I know that if I have non hodgkins, the longer I leave it , the harder it will be to combat and it isn't something I can just cure myself of....
But on the other hand I am so scared of going to the doctors and them not looking into things and I will come out feeling ridiculed and stupid for thinking I needed help.
What do you all think?...
does anyone out there have non hogkins?... and experienced the same thing?
are all the symptoms I have written just all part of celiac and something that will pass with time?
I seriously need some view points on this....
please help me?
#3
teemaree
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- Group: Advanced Members
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- Joined: 11-January 09
Posted 16 November 2009 - 08:17 PM
Thank you for your kind words...
They were very much appreciated...
Well I phoned the medical center that I use to visit, and just asked for an appointment with any doctor...
I was given a lovely indian woman. and she listened to me...
Then went sort of mad at me... she said why have you let this go on so long...
I said well the last time I complained about these things, I was told there was nothing wrong...
She looked on her computer to see who I had seen, and there was no notes about anything except a sore wrist that I also had....
I said my husband begged the doctor to look into what is wrong with... that Im deterioting before his eyes,,,and this nice doctor said, I'm so sorry, sometimes us doctors need to do more than just listen, we need to act!...
She confirmed my suspecions, she said that she believes I well could have lymphomia...
She examined me...and also got the opinion of three other doctors, as to what was the quickest roads to take to get on top of everything...
She got me in quick smart to an oncologist , she didn't want to muck around..and asked them to see me fast, because there is normaly a long wait...she is sending me for cat scans and biospys..
All she kept saying to me, is.. Im so worried for you this is very serious . And she kept saying WHY???WHY??? have you let this go on for so long?... I told her the truth, I was scared of being called a hypercondriac.
Now I am glad that I wrote my thoughts and feeling here, because that gave me the power to make myself go to the doctors. I'm not really scared now of any results, all I wanted was to know....if what I suspected was true...or least to just have those things checked so that I wasn't left feeling I knew all along, and noone would help.
So I will cross the next bridges as they come, but I at least feel better that I was listened too.
They were very much appreciated...
Well I phoned the medical center that I use to visit, and just asked for an appointment with any doctor...
I was given a lovely indian woman. and she listened to me...
Then went sort of mad at me... she said why have you let this go on so long...
I said well the last time I complained about these things, I was told there was nothing wrong...
She looked on her computer to see who I had seen, and there was no notes about anything except a sore wrist that I also had....
I said my husband begged the doctor to look into what is wrong with... that Im deterioting before his eyes,,,and this nice doctor said, I'm so sorry, sometimes us doctors need to do more than just listen, we need to act!...
She confirmed my suspecions, she said that she believes I well could have lymphomia...
She examined me...and also got the opinion of three other doctors, as to what was the quickest roads to take to get on top of everything...
She got me in quick smart to an oncologist , she didn't want to muck around..and asked them to see me fast, because there is normaly a long wait...she is sending me for cat scans and biospys..
All she kept saying to me, is.. Im so worried for you this is very serious . And she kept saying WHY???WHY??? have you let this go on for so long?... I told her the truth, I was scared of being called a hypercondriac.
Now I am glad that I wrote my thoughts and feeling here, because that gave me the power to make myself go to the doctors. I'm not really scared now of any results, all I wanted was to know....if what I suspected was true...or least to just have those things checked so that I wasn't left feeling I knew all along, and noone would help.
So I will cross the next bridges as they come, but I at least feel better that I was listened too.
#4
yolo
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Posted 16 November 2009 - 08:22 PM
I agree--you should see a doctor. Non Hodgkins is more treatable than most cancers according to the Mayo clinic if its caught early. Meanwhile however I am hoping you have eat more basic whole foods with tons of vegetables--rather than the sugary bleached flour foods that you see in various articles etc.
Bea
Bea
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!
#5
Dada2hapas
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Posted 16 November 2009 - 08:46 PM
I would never recommend avoiding seeing a physician. For me, if my "current" physician seems unfamiliar with my celiac issues, I just search for one more suitable/informed.
Good luck and best wishes.
Good luck and best wishes.
-Dada
#6
ravenwoodglass
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Posted 17 November 2009 - 03:22 AM
I am glad you got in to see this doctor quickly. I think a lot of us can identify with being blown off by doctors and being told we are hypocondriacs. It does make us leary of doctors after years of it. I am hoping that the tests turn out well and that it turns out that perhaps you do have gluten sneaking in, your symptoms could also be from that but the tests will tell for sure if you do have lymphoma.
Do follow Yolo advice and eat a clean, unprocessed diet if you are not doing so already. Let us know how things go.
Do follow Yolo advice and eat a clean, unprocessed diet if you are not doing so already. Let us know how things go.
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)
"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)
#8
mushroom
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Posted 17 November 2009 - 10:44 AM
I know where you come from, teemaree, and I am sorry about where you find yourself. Good for you to finally seek some help, and good wishes for your diagnosis and treatment. We'll be thinking of you.
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
"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
#9
teemaree
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Posted 22 November 2009 - 05:14 PM
Thanks again everyone for your support!
I thought I would update where I at with this....
I've had blood tests and I haven't my results as yet...
Has ultra sound and ct scans...
the ultra sound fount 2.01 lymph node and three other non vascular lymph nodes in right groin
and three non vascular lymph nodes in left groin...
I have the biopsies on these tomorrow.
They found 5 cysts in the liver and cyst on right anexa
bulky uterus with endetrial fluid
BUT NO MASS OF LYMPHADEMOPATHY
So things now really hang on them lymph nodes being begnin ....
but there are no masses of lymphademopathy, which is great news!
if the nodes are malignant, at least we are on top of things , before they could have been far worst!
but Im truly hoping they aren't malignant
I thought I would update where I at with this....
I've had blood tests and I haven't my results as yet...
Has ultra sound and ct scans...
the ultra sound fount 2.01 lymph node and three other non vascular lymph nodes in right groin
and three non vascular lymph nodes in left groin...
I have the biopsies on these tomorrow.
They found 5 cysts in the liver and cyst on right anexa
bulky uterus with endetrial fluid
BUT NO MASS OF LYMPHADEMOPATHY
So things now really hang on them lymph nodes being begnin ....
but there are no masses of lymphademopathy, which is great news!
if the nodes are malignant, at least we are on top of things , before they could have been far worst!
but Im truly hoping they aren't malignant
#10
mushroom
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Posted 22 November 2009 - 05:40 PM
I'm pulling for you. Truly hope things turn out fine tomorrow. Good luck. [[[[hugs]]]]
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
"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
#11
Ahorsesoul
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- Group: Advanced Members
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- Joined: 24-February 08
Posted 22 November 2009 - 05:41 PM
teemaree,
Know you will be in my prayers. So glad you found a doctor who listened. Keep us informed on how you are doing.
Know you will be in my prayers. So glad you found a doctor who listened. Keep us informed on how you are doing.
1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world
#13
yolo
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Posted 22 November 2009 - 06:31 PM
Am so glad you went in and found this so quickly. Crossing my fingers with you that it is OK and not malignant. But even if it is, it is better to know about it now and have the real chance of treating it successfully before it gets carried away...
Bea
Bea
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!
#14
tarnalberry
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- Group: Advanced Members
- Posts: 9,100
- Joined: 30-December 03
Posted 22 November 2009 - 06:43 PM
Keeping my fingers crossed for you!
Tiffany aka "Have I Mentioned Chocolate Lately?"
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
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
#15
jerseyangel
- Tyler
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- Joined: 29-September 05
Posted 22 November 2009 - 07:42 PM
I'll be thinking about you--best of luck!
Patti
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Celiac.com - Celiac Disease Board Moderator
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Celiac.com - Celiac Disease Board Moderator
