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Ehlers-Danlos Syndrome Community
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15075305 tn?1438269976

EDS and food allergies/intolerance

Hi everyone! I have been recently diagnosed with EDS type III. The search for a diagnosis took more than 20 years, but finally I was able to find my rare disease : ) Thing is, besides the well-known problems linked to EDS, I have been experiencing some strange reactions to food, smells and chemical products of every kind. Now, my main concern is the food situation, as I can have a very limited variety of food. I have been diagnosed with common allergies: nickel, thimerosal and kathon. I am Italian and here everyone is assigned with a permanent basic doctor (of course, we can change the basic doctor if we are not satisfied with him/her). According to basic/generic doctor, my not common "allergies" problems are linked to EDS, but according to my EDS specialist this is not the case. Briefly, my allergy or intolerance problems consist of: mucosal inflammation; skin desquamation (ears, back, pelvic area); confusion; heavy sleepiness; lack of appetite; gastrointestinal problems). Has anyone ever experienced something similar? Thanks!
3 Responses
620923 tn?1452915648

  Hi and welcome to the EDS forum.

Yes but I have a related conditions as well...it is Chiari Malformation....and GI issues as well as confusion   and sleep issues are also a symptom of it.

Have you had a MRI of the cervical spine?

I was told that EDS can indeed cause allergy like issues not only with food but meds as well....and I have had quite a few....including issues with odors and chemicals....some  of our issues may not be considered an allergy but has a similar effect....JMHO

  I have not had the shedding of my skin tho....but have had a few of the same things you have had...since I do have more then one condition it is hard to know which condition it is from....

Have you had a MRI of the cervical spine to make sure you do not have any other issues?
15075305 tn?1438269976
Hi Selma, thanks!

No, I didn't have a MRI of the cervical spine. Probably my EDS specialist doesn't consider possibility Chiari Malformation in my case. Honestly, I don't think I have CM, but never say never! I have GI issues too.

I have a lot of issues with meds, in fact I cannot take anything. So, imagine my problems in dealing with pain! But that's fine, I don't like to complain :) So, you connect your "allergy" problems to EDS? Ok, that's nice to hear...I mean, I have been looking for a diagnosis since I was 8, now I am 33 and I would like to be able to find a name to all my health problems and just go on with my life.

This opinion that you have, is in line with my basic doctor's opinion and it makes sense if one thinks that almost everything in our body is made of collagen...so my skin, mucuses etc can be very sensitive.

One more thing, my eyes literally burn if exposed to artificial light (I am photophobic but I am talking about smth different now). So I must wear sun glasses almost everywhere I go, expect if the bulb is inside a lamp and the lamp is thick. Have you ever experienced something similar?

Bye
620923 tn?1452915648

  I have a horrible time with lighting....can not use florescent lights and the gov stopped production of incandescent bulbs.....when I was younger, I would not go out at night bcuz the lights hurt my eyes so much....I do not go out at night much any more and I no longer drive......but I do know what you at talking about. My eye Dr had me get tinted glasses to wear when on the computer and inside to help with the light issue...have you tried them?

As for your " I don't have Chiari, but never say never" statement....I said the same about EDS...and found I was wrong....we never can say never until we rule it out.

Another thing or person to look into is Dr Dianna Driscoll and her Driscoll theory ....my understanding is those with EDS tend to over produce histamine...which can cause reflux due to PND....so instead of typical reeflux meds a H2 blocker might work better....I now take a H2 blocker along with anti histamines and my reflux issues are under control or calmer then they were....

I have talked with so many EDSers that have the allergy links....med issues...etc...so I am not alone in this and neither are you.
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