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My son, Brandon, is 27 and just moved to Houston, TX at the beginning of the month. He has been having some GI difficulty for the past few months, and a few days ago when I spoke with him it had gotten REALLY bad. I told him that he really needed to find a GI doc in Houston and have a work-up.
He was able to schedule an appointment within two days of calling -- unbelievable -- and this guy didn't make him see a primary care doctor first, blah, blah, blah. But here is the even MORE unbelievable part and the incredibly GOOD part: When the doctor was taking his history, including his symptoms the doctor actually listened and acknowledged them. One of the more unusual symptoms is that my son has begun sweating profusely -- something entirely unlike him -- within the last few months.
Brandon then told the doctor that "my mother has neurogenic celiac disease". The doctor said, "Oh -- then she has . . . " and started listing my symptoms! He then said, "Profuse sweating is autonomic -- I already know that I want to do a celiac panel on you. You could be developing neurogenic celiac as well. It is hereditary."
HALLELUJAH! There is a physician in this world who LISTENS TO THE PATIENT, who INCORPORATES THAT INFORMATION into his thought process, and THEN DOES SOMETHING ABOUT IT!
I am so pleased about this doctor that I just needed to share the news . . .
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#1
still tiredofdoctors! 
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Posted 22 October 2009 - 08:45 PM
Lynne Previously "tiredofdoctors!!!", but I had SO much difficulty retrieving a lost password
Diagnosed with "Sprue-Related Ataxia" January 2005; Gluten-Free Lifestyle since August 2005 (Denial ain't just a river in Egypt)
To see additional diagnoses and what predisposed me to the seroconversin to celiac vs. gluten interolerant, view "About Me" page
"If you have to choose between being right and being kind . . . pick kind. Wayne Dyer, PhD
Diagnosed with "Sprue-Related Ataxia" January 2005; Gluten-Free Lifestyle since August 2005 (Denial ain't just a river in Egypt)
To see additional diagnoses and what predisposed me to the seroconversin to celiac vs. gluten interolerant, view "About Me" page
"If you have to choose between being right and being kind . . . pick kind. Wayne Dyer, PhD
#2
mushroom
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Posted 22 October 2009 - 09:51 PM
Isn't it amazing to find someone like that?!!! Shouldn't be, but it is 
I am so glad for your son.
I am so glad for your son.
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
#3
Fiddle-Faddle
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Posted 23 October 2009 - 04:08 AM
WOW????
Can your son ask this doctor for a list of other doctors he might know around the country who have either as much sense or the same training???
We need more doctors like this!!!
A thought about the profuse sweating--that is often a symptom of overactive thyroid. I wonder if they will eventually figure out a causative link between neuro celiac (or any celiac) and overactive thyroid?
Can your son ask this doctor for a list of other doctors he might know around the country who have either as much sense or the same training???
We need more doctors like this!!!
A thought about the profuse sweating--that is often a symptom of overactive thyroid. I wonder if they will eventually figure out a causative link between neuro celiac (or any celiac) and overactive thyroid?
#6
Mtndog
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Posted 23 October 2009 - 09:51 AM
Wow- sorry Brandon's sick but AMEN to doctors like that!!!!!!
***************************
Beverly
Gluten free since 2005
In the midst of winter, I found there was within me an invincible summer.
Albert Careb
Beverly
Gluten free since 2005
In the midst of winter, I found there was within me an invincible summer.
Albert Careb
#7
still tiredofdoctors!
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Posted 23 October 2009 - 12:46 PM
I had really started getting concerned. His doctor here did all the "perfunctory" tests: thyroid, CMP . . those things. Wouldn't take into account the celiac component, though.
Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!
The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.
I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING?
P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME
Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!
The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.
I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING?
P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME
Lynne Previously "tiredofdoctors!!!", but I had SO much difficulty retrieving a lost password
Diagnosed with "Sprue-Related Ataxia" January 2005; Gluten-Free Lifestyle since August 2005 (Denial ain't just a river in Egypt)
To see additional diagnoses and what predisposed me to the seroconversin to celiac vs. gluten interolerant, view "About Me" page
"If you have to choose between being right and being kind . . . pick kind. Wayne Dyer, PhD
Diagnosed with "Sprue-Related Ataxia" January 2005; Gluten-Free Lifestyle since August 2005 (Denial ain't just a river in Egypt)
To see additional diagnoses and what predisposed me to the seroconversin to celiac vs. gluten interolerant, view "About Me" page
"If you have to choose between being right and being kind . . . pick kind. Wayne Dyer, PhD
#9
ravenwoodglass
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Posted 06 November 2009 - 04:37 PM
purrcep4, on Nov 3 2009, 02:25 AM, said:
Hi,
I am a newly diagnosed celiac with DC. Can you tell me more about neuro celiac? I'm thinking I may have this type.
Thanks in Advance,
Annie
I am a newly diagnosed celiac with DC. Can you tell me more about neuro celiac? I'm thinking I may have this type.
Thanks in Advance,
Annie
When celiac attacks the brain it can do a number of things. Gluten ataxia is one, that is a feeling of being off balance. For me that means I feel like I am falling to the right even if I am not. It also interferes with nerve conduction, I lost reflexes in my legs when I was still a child but 2 years after going gluten free I now have reflexes again in my 50's. It can also cause a variety of mental illnesses, depression and anxiety and has even been linked to schitzophrenia (sp?). It can also make thinking clearly tough, what many of us call brain fog. That interferes with our ability to process or remember information. At my worst I couldn't remember well enough to even read a book. I wouldn't be able to keep characters straight and then couldn't remember one sentence long enough to be able to make sense of the next. It also effected my ability to do things like math in my head. Given a string of 5 numbers I would forget the total of the first two before I could add in the third. All of these issues have improved since I have been gluten free. I can even put a book down now and remember enough of it to be able to pick it back up and finish reading it.
If you do a search using the words celiac and neurological there should be quite a bit of info that comes up.
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)
#10
Ahorsesoul
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Posted 06 November 2009 - 06:32 PM
still tiredofdoctors!,
Could you find out the doctors name, then post it under a new topic:" Houston, TX Doctor" so other people in the Houston area will know who to make an appointment with, it is so hard to find a good doctor. He really hit a gold mind!!!
Could you find out the doctors name, then post it under a new topic:" Houston, TX Doctor" so other people in the Houston area will know who to make an appointment with, it is so hard to find a good doctor. He really hit a gold mind!!!
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
#11
PhillyCeliacTriathlete
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Posted 10 November 2009 - 02:17 PM
still tiredofdoctors!, on Oct 22 2009, 11:45 PM, said:
My son, Brandon, is 27 and just moved to Houston, TX at the beginning of the month. He has been having some GI difficulty for the past few months, and a few days ago when I spoke with him it had gotten REALLY bad. I told him that he really needed to find a GI doc in Houston and have a work-up.
He was able to schedule an appointment within two days of calling -- unbelievable -- and this guy didn't make him see a primary care doctor first, blah, blah, blah. But here is the even MORE unbelievable part and the incredibly GOOD part: When the doctor was taking his history, including his symptoms the doctor actually listened and acknowledged them. One of the more unusual symptoms is that my son has begun sweating profusely -- something entirely unlike him -- within the last few months.
Brandon then told the doctor that "my mother has neurogenic celiac disease". The doctor said, "Oh -- then she has . . . " and started listing my symptoms! He then said, "Profuse sweating is autonomic -- I already know that I want to do a celiac panel on you. You could be developing neurogenic celiac as well. It is hereditary."
HALLELUJAH! There is a physician in this world who LISTENS TO THE PATIENT, who INCORPORATES THAT INFORMATION into his thought process, and THEN DOES SOMETHING ABOUT IT!
I am so pleased about this doctor that I just needed to share the news . . .
He was able to schedule an appointment within two days of calling -- unbelievable -- and this guy didn't make him see a primary care doctor first, blah, blah, blah. But here is the even MORE unbelievable part and the incredibly GOOD part: When the doctor was taking his history, including his symptoms the doctor actually listened and acknowledged them. One of the more unusual symptoms is that my son has begun sweating profusely -- something entirely unlike him -- within the last few months.
Brandon then told the doctor that "my mother has neurogenic celiac disease". The doctor said, "Oh -- then she has . . . " and started listing my symptoms! He then said, "Profuse sweating is autonomic -- I already know that I want to do a celiac panel on you. You could be developing neurogenic celiac as well. It is hereditary."
HALLELUJAH! There is a physician in this world who LISTENS TO THE PATIENT, who INCORPORATES THAT INFORMATION into his thought process, and THEN DOES SOMETHING ABOUT IT!
I am so pleased about this doctor that I just needed to share the news . . .
Wow. It's not often you read good news about docs these days, so I was pleasantly surprised your son Brandon got the proper treatment he deserved. On top of this doctor, I would recommend some online reading by my personal holisitic doctor Simon Aslanian. He is located in South Jersey, where I lived for 22 years, and is a reknowned celiac expert and is newly ONLINE!
His website is www.lifesforce.com. I cannot tell you the difference he has made in my life in various ways in regards to celiac and gluten-free knowledge. He was teaching the gluten-free diet to anyone who would listen over 10 years ago when the world knew NOTHING about IT. Remember those days? Let's forget those days.
So good luck to you and your son and hats off to his newfound doctor for caring!
John
www.GlutenFreeTriathlete.com
#12
momofcdson
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Posted 11 November 2009 - 03:42 AM
still tiredofdoctors!, on Oct 23 2009, 12:46 PM, said:
I had really started getting concerned. His doctor here did all the "perfunctory" tests: thyroid, CMP . . those things. Wouldn't take into account the celiac component, though.
Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!
The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.
I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING?
P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME
Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!
The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.
I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING?
P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME
I loved reading your blog, as I too have a son who was recently just diagnosed with Celiac.
We live in Michigan, and he just recently moved to Georgia after graduating from College.
He immediately started feeling terrible once he arrived in GA, and we told him it was probably just stress from moving, not having a job yet, etc. His symptoms were stomach aches, diarrhea, hair loss, tired, etc. After about 3-4 months of this, he decided to get a doctor in GA, and thank god for that!
His doctor did blood work and ran the test for Celiac and it came back positive! I sent a note to the woman in charge of the Savannah Celiac Support Group asking for a recommendation of a good doctor who specialized in Celiac, and she gave me her own doctor. My son made an appointment with him, and had the biopsy done, and has gone gluten free since. He is doing great! However, still seems to get the cross contamination on and off. I think he may cheat here and there too, with a beer on and off. I keep telling him you can't do that! But at 24, I'm sure giving up beer is hard! He isn't crazy about the gluten free beers
LOL Anyway, it is nice to see another mother writing about her son! Good luck to you.
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