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Ehlers Danlos

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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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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.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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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

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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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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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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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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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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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.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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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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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,


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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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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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.gov/MEDLINEPLUS/ency/article/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)


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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: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:


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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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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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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I was first diagnosed with the POTS, a year ago. Then just this past November, it was EDS. In December, it was severe osteoporosis, and now, it's severely malnourished and gluten is a problem for me. I am sure I have at least one other food sensitivity, although I'm not sure what it is right now (although dairy is certainly out right now).

I'm excited to hear that I may see a decrease in subluxations and dislocations and pain as long as I keep a gluten-free diet!!! It's been SOOOO unbearable these past 3 years especially, although I've had pain my whole life. I hope that bringing up my Vitamin B levels will help with nerve pain, too.


DX: Ehlers-danlos syndrome, cervical syrinx, Postural Orthostatic Tachycardia Syndrome, Barrett's Esophagus, GERD, osteoporosis, thyroid disease, anemia, hypokalemia, niacin deficiency, vitamin D deficiency and various other malnutritions.

Although not diagnosed officially yet, I have suspected celiac since October of 2010. At least 2 separate physicians who are experts with collagen deficiencies (such as Ehlers-danlos syndrome) have mentioned the possibility to me, and one has tested (although I haven't gotten the results back yet).

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I was just diagnosed with EDS this week, but I know I've had it my whole life. I have hyperextendable fingers, elbows and knees and my hips and lower back have been a constant source of pain and instability. I also have thin, stretchy skin, bruise easily, etc. I have microscopic colitis, gluten and casein intolerance (now being told it's full-blown celiac), and mild POTS as well. My EDS/celiac specialist says 20% of his EDS patients also have celiac, so there seems to be a real connection.

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My daughter was just diagnosed with Ehlers Donlos, hypermobile type 3 days ago.  I don't know if their is a connection but she was diagnosed with Aspergers at a late age of 17 as well as developmental coordination disorder.  She has motor planning problems.  I was told that some people on the autism spectrum do better with a gluten free diet.  She is almost all gluten free and only eats gluten when we are out, as their is not much to eat, as she is a vegetarian as well.  Anyway, avoiding the gluten has reduced the headaches and neck and shoulder pain.  She and her brother seem to have a touch of IBS.   Anybody have any idea of how reducing casein might help her? Thank you.  

Edited by Becky OConnor
added information

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I was diagnosed with Ehlers Danlos about 40 years ago, and Celiac disease about 20 years ago. With both, there was little literature or solutions available at the time. I suspect my grandmother had celiac, but I can not find any genetic similarities with any other relatives. I am now experiencing unexplained digestive problems, not related to celiac (I am very strict about avoiding gluten.) I didn't know until now that some this issues may be connected to ED. I exhibited ED symptoms as early as childhood, and celiac symptoms as a young teen, but was not diagnosed with either until decades later. Now, at 66, I think the combination is getting the best of me.

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My daughter was diagnosed with celiac, with clinical confirmation through bloodwork and biopsy.  After starting on meds for MCAS, a comorbidity of EDS, she no longer needs to be gluten free.  Ask your EDS specialist about MCAS and antihistamines to help with the symptoms. Hopefully you can find relief.  God Bless!

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2 hours ago, Sus said:

My daughter was diagnosed with celiac, with clinical confirmation through bloodwork and biopsy.  After starting on meds for MCAS, a comorbidity of EDS, she no longer needs to be gluten free.  Ask your EDS specialist about MCAS and antihistamines to help with the symptoms. Hopefully you can find relief.  God Bless!

Are you saying her meds cured her of celiac disease? If she was confirmed by blood and biopsy, how is it that she no longer needs to be gluten free? Is this under doctor’s orders? Have you had follow up bloodwork? I’m sincerely asking.

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39 minutes ago, Sharz said:

Are you saying her meds cured her of celiac disease? If she was confirmed by blood and biopsy, how is it that she no longer needs to be gluten free? Is this under doctor’s orders? Have you had follow up bloodwork? I’m sincerely asking.

Celiac disease is a lifelong autoimmune disease.   The only known treatment is a strict gluten free diet for life.  Celiac disease can go into remission (intestinal villi healing) but it will return if gluten is reintroduced to a celiac’s diet.  

Sus’s daughter might be feeling well by addressing Mast Cell Activation issues (along with a gluten free diet).  She could have been misdiagnosed as a celiac initially.  Also, celiac disease symptoms can wax and wane.  Antihistamines can help with MCAS, and may help with some celiac disease symptoms, but it will not cure celiac disease.  

I have celiac disease.  A repeat endoscopy revealed that my small intestine has healed on a gluten free diet, but I can never go back to consuming gluten.

https://www.massgeneral.org/children/services/celiac-disease/celiac-disease-faq.aspx

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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