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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.

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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.

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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,

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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)

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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:

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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.

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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
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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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