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Children with Ehlers Danlos Face Severe Food Allergy Risk

Eggs are a common food allergy item

Life is already difficult for children who have Ehlers Danlos syndrome, which is characterized by joint hypermobility, cardiovascular issues, and other problems. Now a new study indicates these children may face a high risk for severe food allergy that is difficult to manage.

Allergy risk found in Ehlers Danlos type 3

Ehlers Danlos syndrome is a group of inheritable disorders in which individuals have genetic defects that cause problems with a protein called collagen, a material in connective tissue. Connective tissue provides support to the skin, muscles, organs, and ligaments, and so individuals with the syndrome experience a range of symptoms and life challenges.

There are six main different types of Ehlers Danlos syndrome, and each type is classified by its characteristic signs and symptoms. Ehlers Danlos syndrome type 3 is most characterized by joint hypermobility that affects both large (knees, elbows) and small (toes, fingers) joints.

Rebecca M. Cutts, MBBS, of Great Ormond Street Children’s Hospital in London, and her colleagues, announced at the annual meeting of the American Academy of Allergy, Asthma, and Immunology they had discovered a high prevalence of food allergy among 19 children with Ehlers Danlos syndrome type 3.

Children with Ehlers Danlos type 3 often experience dislocations of their joints, especially of the shoulder, knee, and temporomandibular joint (in the jaw). Chronic limb and joint pain is common and can be debilitating, and hyperextensibility of the skin and bruising vary in severity.

Among the 11 boys and 8 girls in the study, who averaged about 8 years of age, 74% tested positive for allergy to milk, egg, wheat, and soy using the food elimination test. A few also exhibited symptoms when exposed to bananas, dairy products, gluten, and nuts.

Typically, individuals who are allergic to foods can control their symptoms if they avoid the offending items. However, among children with Ehlers Danlos type 3, it’s not that simple. Cutts noted, “This is a population that is extremely difficult to manage.”

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Symptoms among these children included abdominal pain (90%) and constipation (90%), and all of them needed several medications, including antihistamines and immunosuppressants. Two-thirds required proton pump inhibitors, and 13 children required artificial nutrition either via a stomach tube or intravenously.

More about Ehlers Danlos syndrome
The prevalence of Ehlers Danlos syndrome is approximately 1 in 5,000, affects both males and females equally, and crosses all racial and ethnic borders.

Gastrointestinal problems are common in Ehlers Danlos syndrome because of the fragile nature of the connective tissues. Therefore, individuals can experience gastroesophageal reflux disease (GERD, irritable bowel syndrome, constipation, diarrhea, hiatal hernia, and other complications.

Children and adults with Ehlers Danlos syndrome face daily challenges associated with joint hypermobility and skin issues. Their loose and unstable joints make them highly likely to develop osteoarthritis at an early age, and their fragile skin makes them prone to tears and bruising that is accompanied by slow wound healing and the possible development of molluscoid pseudo tumors (lesions that develop over pressure areas).

In addition to living with these challenges, people with Ehlers Danlos syndrome have reported receiving poor attention from the medical community. A study published in the January 2010 issue of Disability and Rehabilitation noted individuals with the disease reported “being ignored and belittled by health-care professionals” and sometimes “being treated and considered merely as an object.”

The findings of this latest study suggest children with Ehlers Danlos type 3 may face the risk of severe food allergies that are difficult to manage. Parents of affected children may want to seek help or support from knowledgeable health-care providers, support organizations such as the Ehlers-Danlos National Foundation, and parents of other children with the syndrome.

Cutts R et al. Gastrointestinal food allergies in children with Ehlers Danlos type 3 syndrome. American Academy of Allergy, Asthma and Immunology 2012; abstract 129
Ehlers-Danlos National Foundation
Solomon JA et al. GI Manifestations of ED. Am J Gastroenterol 1996 Nov; 91(11): 22820-28

Image: Courtesy PhotosPublicDomain



Would be great of Great Ormond Street Hospital would let EDS sufferers access their services. Unless you have a referral from a paeds consultant (not GP's why??!) there is no way your going to be seen by anyone who knows anything about the gastro issues. What's the point of articles when GOSH are totally reluctant to diagnose EDS let alone treat it!!.
I'm sorry GOSH doesn't let you access their services. However, you can at least use the information to approach other doctors at other hospitals or institutions and use it as a point of discussion.
For those in the UK- children with EDS can be seen by Dr Nigel Meadows who holds a joint clinic with Prof Q Aziz at St Mary's Paddington. A good GP worth his salt will make the referral for those with a diagnosis. Adult gut issues are addressed by Prof Aziz at Barts Hosp west Smithfield- again if you have EDS you can insist on a referral as no-one else in the country knows anything about it. I agree with the above about GOSH. My children attended the 2 week rehab and we were given the impression it was almost a cure ( though every one else there was on their 2nd, 3rd 4th visit????). They refused to acknowledge gut issues or autonomic dysfunction- my children have all be since diagnosed with both. For anyone who suspects child POTS ask Prof Aziz to do a basic test. For tilting, the only Dr who will do it as far as I know is William Whitehouse at Queens Medical Nottingham. It is important to get a diagnosis of both elements or you will be continued to be questioned why your child is so ill and you will not get the support or services needed. It is a fight ALL the time as we all know. Insist your GP makes the referral. Best wishes
Thank you for sharing this information with other readers. Personal experiences such as yours can greatly help other individuals who are seeking competent help for their children who have Ehlers Danlos.
If you access the Gastro department initially, for GI symptoms they are very open to supporting those with EDS. There is a great deal of research currently at Cincinnati hospital investigating a combination of EDS and EGID (eosinophilic disease) which all my children have. Some rheumatologists at GOSH are fab, a couple are hopeless and categorically refused to dx EDS - and were later proved wrong. Their physio department isn't so good, they are solely into weights/strength building which is important, but should be in conjunction with managing and improving stamina, not killing yourself every day!
I have EDS Arthrochalasia type and have suffered from food allergies and GI complications since around 14 and It would have brillinat to have had this information. I take nalcrom which helps to block the reactions in the gut which has helped. I have heard of many adults with different types who suffer with food allergies.
I am sorry you are experiencing food allergies. Thank you for sharing the information about nalcrom---it may help others who have not heard about this treatment.
My son has gastroparesis and reflux, bowel and bladder Incontinance he has EDS type 3, even though he is under GOSH rhuematolgy we still can't get seen by anyone for his gastric issues, he has done the 2 week rehab program there and not only were all his other issues ignored we were also told EDS dosnt exist anymore, we were told they now use the term hyper mobility syndrome, then told the 2 are the same, if the experts can't make their minds up how are our children going to access the help they so desperately need, we were very much made to feel that 2 weeks of physio would cure him, I wish
To anyone reading this from Australia, the place to go for Ehlers-Danlos Syndrome support here is EDSAUS. Our website can be found by Googling EDSAUS (this page won't let me post the link in a comment) and we currently have 860 members, so our forum page is pretty busy! It's easy to feel like there aren't many of us around, but our numbers on the EDSAUS page are growing literally every day. I hope to see you there! ^_^ Emma Cornforth Senior Advisor EDSAUS