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Ehlers Danlos


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16 replies to this topic

#1 Guest_Eagle_*

 
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Posted 02 June 2007 - 09:17 PM

I believe that I have seen this topic come up before on this site but I am trying to find out if there is some genetic connection between Ehlers Danlos connective tissue disorder and Celiac Disease, and if these are also possibly connected with Asperger's Syndrome. Is there anyone else out there that has two of these concurrently, or all three?
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#2 ravenwoodglass

 
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Posted 03 June 2007 - 03:00 AM

I don't know if there is any genetic connection other than 'luck' but we have all three in my family. We have one family member with ED and Celiac and one who has all 3.
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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)

#3 tarnalberry

 
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Posted 03 June 2007 - 09:18 AM

EDS is genetic: Ehlers Danlos National Foundation - Inheritance
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#4 Ms. Celiac

 
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Posted 05 June 2007 - 02:40 PM

I have 2 disorders that are related to EDS; arnold chiari malformation type 1 and tethered cord syndrome. My doctors also suspect that I may have a slight case of EDS and I also have Celiac Disease. I believe that I've heard other members mention that that have both Celiac Disease and Ehlers Danlos Syndrome.
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#5 Renae

 
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Posted 05 June 2007 - 03:22 PM

I have 2 disorders that are related to EDS; arnold chiari malformation type 1 and tethered cord syndrome. My doctors also suspect that I may have a slight case of EDS and I also have Celiac Disease. I believe that I've heard other members mention that that have both Celiac Disease and Ehlers Danlos Syndrome.



I have one daughter with Celiac Disease and one daughter with EDS. Both are autoimmune diseases, I believe.
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#6 sillymomx3

 
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Posted 08 June 2007 - 09:53 PM

Ehlers Danlos is a connective tissue disorder, not autoimmune. It is an actual genetic defect in the make up of collagen in the body.

I have EDS as well as Celiac Disease, my oldest son has both also. My daughter has mild EDS and carries the genetic marker for Celiac Disease. My youngest son has severe EDS, hypotonic cerebral palsy and nonverbal learning disorder which is controversial as whether or not it is on the autism spectrum. It resembles Asperger's in the way of social skills, problems with pragmatic language, etc.
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#7 Pro212

 
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Posted 25 March 2008 - 02:36 PM

Hello folks. I just joined this forum. As a person with Ehlers Danlos Syndrome, I have developed a severe gluten intolerance during the course of the last year. I've been gluten-free for several weeks and notice a dramatic decrease in the amount of joint pain and swelling, though of course, no change in the amount of subluxations/dislocations.
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#8 ravenwoodglass

 
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Posted 26 March 2008 - 02:31 AM

Hello folks. I just joined this forum. As a person with Ehlers Danlos Syndrome, I have developed a severe gluten intolerance during the course of the last year. I've been gluten-free for several weeks and notice a dramatic decrease in the amount of joint pain and swelling, though of course, no change in the amount of subluxations/dislocations.



Hopfully you will have the same result I have. I have been gluten-free now for over 5 years and don't know if it is a coincedence or not but for the last 4 I have seen a great decrease in my subs and dislocations. I used to have to relocate my ankles every morning and was often woken up by them dislocating. That almost never happens anymore. I have noticed that after the excess fluid reactions from gluten and soy have left my body the chance of dislocation has decreased. About the only time I dislocate sleeping now is when glutened. I do have to still watch how I stand up and stuff to keep the knees in line, mine bend backward, but the out of the blue instances of dislocation are now few and far between.
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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)

#9 Pro212

 
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Posted 26 March 2008 - 06:10 AM

Hopfully you will have the same result I have. I have been gluten-free now for over 5 years and don't know if it is a coincedence or not but for the last 4 I have seen a great decrease in my subs and dislocations. I used to have to relocate my ankles every morning and was often woken up by them dislocating. That almost never happens anymore. I have noticed that after the excess fluid reactions from gluten and soy have left my body the chance of dislocation has decreased. About the only time I dislocate sleeping now is when glutened. I do have to still watch how I stand up and stuff to keep the knees in line, mine bend backward, but the out of the blue instances of dislocation are now few and far between.


Wow, I am glad to hear that. Most of my dislocations/subluxations occur in my spine, hips,ankles, knees, jaw-okay all of them, though the greatest source of pain develops from my spine and hips. In the weeks and days prior to going gluten-free, my hip, and spine (as well as other joints to a lesser degree) were swollen enough to make underclothing too tight and hot to the touch. My eyes and hands were also puffy and itchy. I am good at dealing with pain, but this was unbearable. I could not sit, lie down, or stand for more than a few minutes. Within two days of this diet, I felt a striking difference, with less swelling and pain every day since...My skin is also fragile, so I am hoping for improvement there.
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#10 fedora

 
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Posted 30 March 2008 - 08:35 AM

hi, I would love to find out more. I didn't know about this at all till this week. I go out of place all the time. My knee, my shoulder, my jaw, my neck, my spine, and my ribs. How do I find out if I have this? I would appreciate any info. I am not double jointed. Thank you,
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gluten . . . Kiss my grits!

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wheat free or wheat light- 2003
gluten free- January 2008

#11 mirthspeight

 
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Posted 04 June 2008 - 05:28 AM

I believe that I have seen this topic come up before on this site but I am trying to find out if there is some genetic connection between Ehlers Danlos connective tissue disorder and Celiac Disease, and if these are also possibly connected with Asperger's Syndrome. Is there anyone else out there that has two of these concurrently, or all three?



My 11 year old son was recntly diagnosed with Type I Classical Ehlers Danlos. We're waiting for the vaxcular/heart appt in a couple of weeks. Have you learned more about the "connection" of celiac/gluten intolerance and EDS since you originally posted?
Thanks!
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#12 ravenwoodglass

 
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Posted 04 June 2008 - 06:07 AM

hi, I would love to find out more. I didn't know about this at all till this week. I go out of place all the time. My knee, my shoulder, my jaw, my neck, my spine, and my ribs. How do I find out if I have this? I would appreciate any info. I am not double jointed. Thank you,


This was from medline:

http://www.nlm.nih.g...icle/001468.htm

Exams and Tests

Examination by the health care provider may show:

Excess joint laxity and joint hypermobility
Soft, thin, or hyperextensible skin
Mitral valve prolapse
Periodontitis
Signs of platelet aggregation failure (platelets do not clump together properly)
Rupture of intestines, uterus, or eyeball (seen only in vascular EDS, which is rare)
Deformed cornea
Tests:

Collagen typing (performed on a skin biopsy sample)
Collagen gene mutation testing
Lysyl hydroxylase or oxidase activity
Echocardiogram (heart ultrasound)
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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)

#13 dollamasgetceliac?

 
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Posted 06 June 2008 - 11:46 AM

:o Interesting , My Doc. told me that my problem was hyper mobility, I am double jointed and have sensitive skin. I also heard that many Crohn's patients have lower back pain. Before I went on the diet ( not too long ago) I had the feeling as if my knees were shifting and my back was killing me. I do feel a lot better on the diet . The swelling and itching in my palms is not completely gone ( that is not listed but I saw it mentioned on the Forum.) Funny not ha ha , when I go for a long walk my hands swell I have had that for 30 years?
I never knew that there was a name to my condition. So I guess I can add that to my list well it is a list in progress :lol:
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#14 collagenV

 
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Posted 22 September 2008 - 06:03 PM

Hi this is my first post.

I come from a large family that suffers from Ehlers Danlows Syndrom.
A couple of years ago I developed digestion problems determined
through the enterolab.com testing that I also have the primary (and
secondary) genes for Celiacs Disease. It seems that this is likely much
more than coincidence given the empirical evidence of people in this
thread.

We were taught that Ehlers Danlows obeyed typical genetic inheritance
laws, but we are seeing some strange things with EDS skipping generations
and popping where is "should not" based on phenotype. I have a sister
with no signs of EDS who has a son who has signs.

There is no simple genetic test you can order up of EDS to my knowledge.
But you can get genetic test for celiac disease. I believe everyone in an EDS should
be taking Vitamin C in therapeutic doses and get tested for celiac disease. It may
be that removing offending foods and upping Vitamin C can work for many.

It certainly works for me. I have a broad supplementation program that is
heavy on minerals, especially zinc. I developed it based on the work of
Dr. Micheal Colgan. I include glutamine to help build intestinal health.

If someone wants for info I will happily share more on what I take.
There are good ways to improve connective tissue composition.

I hope I can help someone else through this forum.
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#15 Amber1181

 
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Posted 21 October 2010 - 05:03 PM

Hi everyone. I have celiac disease, Ehlers Danlos, and a new one brought to my attention POTS. I found out when I was 22 about the celiac by route of a Detox diet. I didnt commit to the gluten-free Diet until I was 28. My now 3yo daughter was having digestive troubles and I realized that she probably had it too. She has Celiac (gluten and caisen), and Ehlers Danlos. My Brother was recently diagnosed with Celiac... the ED skipped him. We suspect that he also may have POTS. His son, who is 10 months has Ehlers Danlos and we suspect that he will also have Celiac. My mother (after several years now of my insistance)has finally been diagnosed. She has Celiac and ED possibly POTS. We have tracked this back to my maternal grandfather. He is in his 70s and says he is too old to change his ways.
We are all doing quite well on the Gluten-free Casein-free diet. My mother has the most damage from Celiac(enlarged liver, osteopenia, pitting of tooth enamel, low calcium and high iron levels). POTS is Postural Orthostatic tachycardia syndrome. In hind site I have probably presented with this since I was 17. Those of you who have ED definently look at this! The vessles are too stretchy and donot constrict properly, causing decreased cerebral blood flow. I get tachycardia and extreme exhaustion, as well as trouble with swallowing. There is more but less serious.

I was very interested in all yalls post and I hope that mine helps someone.
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