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Has anyone one else had a dual diagnosis of Chron's and Lupus? I hav e had Chron's for three years and was recently diagnosed with Lupus also. As if I didn't already feel like a freak, everyone I know is treating me like I might break. If anyone else has has both of these I would love to hear any suggestions on how to cope. Thanks

 Reply posted for nana.

Greetings,

I was diagnosed with UC in 1997 and recently diagnosed with Celiac Disease by a leading Celiac Speciast in Atlanta. Have you ever been tested for Celiac Disease?  It can cause bone pain and a misdiagnoses of fibromyalgia.  It is commonly seen in Chrone's and UC patients but many conventional doctors are not educated on this or do not believe it.  Here is a clip from an article...

Doctors might have trouble diagnosing CD because the symptoms are often no different from everyday complaints. A team led by Robert D. Zipser, M.D., a gastroenterologist and clinical professor of medicine at Harbor-UCLA Medical Center in Torrance, California, recently surveyed more than 1,000 people from a CD support group. Only half had frequent diarrhea, and only 32 percent were underweight.  A follow-up survey found that fatigue, abdominal pain, and gas were their most common symptoms. On average, a year elapsed before the patients received a correct diagnosis; for one in five, the wait was more than 10 years. They were most often told they had irritable bowel syndrome, anxiety or depression, or fibromyalgia.

Check out www.celiaccentral.org for more info.

Sylvia G

Florida

 Reply posted for jennakate.

Hi there,

Have you ever been tested for Celiac Disease? Did you know that Type 1 Diabetes, UC, Chrone's Disease, and IBS are commonly associated  with Celiac Disease.  If you have a chance please read my recent post (May 15, 2009) regarding my UC and IBS diagnosis in 1997 and Celiac Disease Diagnosis in 2009. Check out www.celiacentral.org and look at the symptoms checklist.  It is crtitical to see a QUALIFIED Celiac Specialist for proper diagnosis.

Sylvia G.

sylphilglover@verizon.net

 Reply posted for hml29.

Have you ever been tested for Celiac Disease? Celiac Disease can masquerade (disguise itself) as many other autoimmune disorders such as Lupus and Fibromyalgia.  I have even read a medical publication discussing Celiac Disease disguising itself as Lupus.

I was diagnosed with UC and IBS in 1997 and was followed by a leading Celiac physician for two years. I was tested for Celiac Disease in 1999 (Blood labs and Biopsy) but my test results were negative.  I moved to Florida several years ago and developed worsening lower GI problems 2.5 years ago that "snowballed into many other problems (Iron deficiency, Neurological problems, ie. limb movement that caused extreme insomnia. osteopenia, weight loss, brain fog, achy joints and back, anxiety and  OBGYN problems).

After seeing NINE doctors who did not take my problems seriously and suffering from severe sleep deprivation (I could not function normally), I returned to my Celiac Specialist in Georgia.  She advised me that Celiac Disease can manifest itself at any time during your life.  It can be triggered by a virus or stressful event (which I had both).  Patients diagnosed with UC, IBS or Chrone's are at higher risk for Celiac Disease.  Last year, she dignosed me with lactose intolerance , which is common with Celiac Disease because the stomach villi are damaged and cannot absorb food properly.

 Ten Percent of celiacs will repeatedly test negative on the blood labs, which can be as a result of selective IGA deficiency. There is a blood lab that tests patients for IGA deficiency but many doctors will not order the test (you have to tell them!)  I would encourage you to pursue testing with a HIGHLY QUALIFIED Celiac Specialist.

If I can be of any help, please feel free to e mail me at sylphilglover@verizon.net

S. Glover

 Reply posted for hml29.

I've read that it is very common if you have one autoimmune disorder, you probably have three or four or five...I was diagnosed with ulcerative colitis four years ago, celiac disease last year, and now type one diabetes last week.  Plus a whole bunch of skin disorders.  Uffda!  I'm learning the best thing you can do for your body is eat healthy, exercise, and rest when you're tired.  Show people how strong you are despite your illnesses!  They will only respect you.  Plus, you're not the only "freak" out there:) 

 Reply posted for hml29.

Hi hml29, I too have been advised that I may have Lupus while having Crohn's. After being sent to Mayo Clinic, several years ago, they tested me for Lupus and considered me borderlined, at the time. Not sure what meds you're taking, but, for me, they removed the Remicade drug and I no longer have any signs of Lupus. As it turned out, I was having an adverse reaction to the Remicade drug. Not knocking Remicade, by all means, just wasn't for me. Good luck. 

 Reply posted for nana.

Well ... I dont' have Crohn's but I do have UC and about everything else that can come with it.  The bonus is all the other things were diagnosed first too.  They found liver disease (primary sclerosing cholangitis) back in June 2008.  Then in September 2008 I got a blood clot in my lung.  That's when the doctors started to talk UC.  I got diagnosed with that December 2008.  I am 34 years old and went from being very healthy to a medical mess.  I have had to miss work recently for a flare that hospitalized me for almost 3 weeks.  I have lost over 80 pounds in around a year.  My doctor says I look healthy in person but on my chart I am a very sick person.  I feel the pain but just with different problems.

Gina

 Reply posted for hml29.

How about Crohns and Fibromyalgia (?) or that's what the doctors are labelling it.... I know just how you feel.  I've got enough trouble with the Crohns - I don't even talk about the other.  I just feel some days like I've been hit with a truck and the stress from one gets the other.  At least alot of the drugs are similar for both.  Hope you do okay !