Link between Eating Disorders (Anorexia Nervosa ) and Celiac Disease?

[glutwin]

Dear Experts,

Do you know if there is any causal relationship between eating disorders (specifically anorexia nervosa) and celiac disease?  A few years ago, in my early forties, I began a running program to ward off a slowing metabolism...Unfortunately it became a bit obsessive, and I ran too much and did not eat enough... I lost my period after a horrifically itchy, two-week rash around my neck (3 months after I began jogging).  Since then (3 years ago) I have not had a return of menses, but I jog only 3 times a week now (instead of 6) for 45 minutes...I eat more, but I cannot seem to digest wheat or gluten in any form...The past two years we lived in Africa(... for my husband's work with an international organisation) and I simply ballooned ..I gained 20 pounds in two months after re-introducing gluten....yet it was all water weight...edema..I had no energy, yet I still ran my 3 days per week..I had muscle cramping...loss of hair...in clumps!.."brain fog"...inability to focus...a great sense of fatigue ..etc...Since we had no access to specialists in our local, my husband "diagnosed" me via Internet information...and I decided to try the exclusion of gluten ...which proved no less than miraculous...The edema disapated...then disappeared...only reoccuring if I ate out in restaurants ( I was extremely strict in my label reading). 

Last summer while on vacation in Oregon I decided to have the celiac panel run as well as have the upper endoscopy...but the results were negative...Unfortunately I had been on the strict GF alimentation for the 6 months preceeding the tests...and have only recently learned that this invalidates the results of said tests !  Now we are back in France near the Swiss border (Geneva area).  My gynecologist has determined that my ovaries are still functioning...so it is not menopause explaining the amenorrhea...and she suggests I see a gastroenterologist specialising in celiac disease..  I recently did a 3 day "gluten accident" on purpose to "see" whether I indeed reacted to gluten...This was a huge error...While it was pleasurable to try french baguette on Monday...pizza the next day...by the third day with bread I was truly fearful...I became dizzy...could not "think" correctly...my addomen's size prompted 2 people to ask if I was expecting...I had edema in my abdomen, hips and lower legs...my adolescents said I had doubled in size and it was because of their concerned promptings that I abandoned my "gluten experiment/blunder". Also..during those 3 days, I had completely lost my normal "sensations" of hunger around mealtimes...I was a mess! 

Now 9 days since that experience and a return to my gluten-free alimentation, I feel "normal" again...yet without the satisfaction of knowing the true root of my problems...or having the validation that only diagnosis can provide...which brings me to a pointed question (finally!)...

Would a genetic test for the markers HLA DQ2 and DQ8 prove that I did not have celiac disease (in their absence) or that it is very possible that I do... in their presence?  I would appreciate any information regarding this area ...I should also mention that I am 47 years old...was diagnosed with osteopenia one year ago and have an identical twin sister who would be glad to help me shed light on this situation...(she has not presented with symptoms to this date)...Must I do a prolonged (and possibly agonising ) gluten challenge to be correctly tested?  Thanking you in advance for any and all information regarding my personal case!

Respectfully ,

Glutwin

[the sensible celiac]

Hi Glutwin,

You obviously have mastered this subject, and I doubt if I can offer much you do not already know.  I'm certainly convinced that you have celiac disease based on what you've said.   I'm not aware of a specific relationship between Anorexia Nervosa and Celiac Disease, but it is known that various kinds of stress can trigger all sorts of latent auto-immune disorders.  The onset of your symptoms in Africa might have been triggered by the physical or emotional stress of your exercise regimen or eating disorder. 

Your references to osteopenia and muscle cramps sound very much like my condition before my diagnosis over ten years ago, when I was 48 years old.

I think it would be wise for you to have the genetic testing that is available today, as I read it, 33% of the population may have the genetic components we now know are prerequisites for the possibility of developing CD, it is thought there are other genes involved too. The University of Maryland School of Medicine says:

What is the meaning of HLA DQ2/DQ8?

As an autoimmune disease, CD is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop CD; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop CD, rather, that they have a genetic compatibility with CD. Conversely, the absence of DQ2/DQ8 almost certainly rules out CD.

So it seems the genetic testing might rule out CD, but not prove that you have it.

If I were in your situation I'd certainly proceed as if I had been diagnosed with Celiac Disease, just as you are. We know that a gluten free diet is not harmful to anyone, beyond being a real nuisance to maintain.  Still there might be great advantage in getting a diagnosis.  You mentioned your "adolescents", if these are your biological children they have a 20% risk of having Celiac Disease, if you in fact have the condition. Even if they are asymptomatic they might be producing the antigens the blood tests can detect.  Consider having blood tests for them.  If either of your parents is living they might be candidates too.

Please keep us posted as your quest for a diagnosis continues, and good luck!

Steve

[glutwin]

Dear Steve,

Thank you so very much for your informative and rapid reply...I'm extremely impressed, and touched, by your compassion, professionalism and the
excellent quality of your website...I shall definitely keep you informed..

The DNA results will be available as of Friday, 14 September and I've scheduled a thorough consultation with a gastroenteroligst in Lausanne,
Switzerland..(very close to us ...being "border" dwellers in France...Again...much thanks ...

Respectfully yours,

Glutwin

[GwenRN]

Glutwin,

I have never heard of a certain link between eating disorders and celiac either, but I agree with Steve. Someone with a genetic predisposition toward celiac could certainly be "triggered" by the stress of an eating disorder like you describe. My own celiac "popped up" after I'd been intentionally dieting, but then, I can also link it to some emotional stress at the time, too.

You certainly seem to have determined that the gluten free diet "works" for you. Whether or not to endure eating gluten for a "definitive" diagnosis is up to you. There are certainly many advantages and drawbacks. Please let us know what your test results say... good luck.

[glutwin]

Dear Gwen RN,

Thank you for your response..I will indeed keep you (and Steve) informed of any news...I also neglected to mention that in addition to the "stressors" of the running /not eating enough ...the idea of moving to Senegal and the "unknown" quality of it was quite anxiety provoking at the time...as well as selling out home in France...In addition, I had experienced a strange flu-like stomach virus that everyone in my family seemed to "get over"..except myself..and I developed an extremely itchy rash around my neck .upper back area which lasted two weeks (I couldn't get an appointment with our allergist) and did not have it seen by a doctor.  On top of that I remember having a last, heavy mense before they stopped altogether in September of 2004...and have not had one since...although my regular gynecological exams have all returned verdicts of "non-menopausal " and "ovaries functioning"...strange...frustrating!  In any event, as I continue my quest to glean information and shed a bit of light on all of this ...I will be sure to post it ...if it could be of help for any other gluten-challenged or gluten inquisitive members.

Respectfully yours,

Glutwin