Hello all,

I'm 29 years old and have been going to the doctor complaining about non-specific symptoms for about 10 years now. My main complaint is overwhelming fatigue and fogginess and diarrhea, but depending on the day you can add another symptom to that. By chance, my doctor decided to test my IgA for celiac, and that came out low. She tested my IgG and IgM and this was the result:
IGG 403; IGA 19; IGM 3

She said these were pretty low and that I might have CVID (Celiac has been ruled out as has most cancers via scans, blood tests, and other procedures). I'm going to see an immunologist soon.

My worry is paradoxical. I want them to diagnose me with something because I just can't function being this exhausted and crappy feeling. I want some kind of treatment. The thing is, though, I never get the classical symptoms of being sick. I never get fevers. Isn't this strange, especially because I am a teacher and work around sick people often?

Any comments or similar experiences?

GE

My granddaughter CVID as her IgG levels are low. She goes to an Epidemiologist...Infectious Disease Specialist. Consider going to one of them.

GE,

Hi, my son Haze is 4 & has an unspecified PID. He doesn't get fevers either & the doctor explained it this way... The immune system is supposed to fight off germs & when they do some times you get a fever that proves the immune system is doing it's job. But when your immune system doesn't function properly or isn't there you won't run a fever because your immune system doesn't know what to do. A fever is the bodys way of fighting off infection & if you don't run a fever you knoe the immune system isn't doing it's job. He gets IVIG treatments every 3 weeks & this has made a big difference in his infections & quality of life. Also N.I.H. has a new program called the mystery diagnosis program. You need a doctors referal & they will take 50 to 100 people each year. You can go to their web site for more details. Good luck!!

Health & happiness,

C.P.

What other tests for Celiac disease have you done? I assume a colonoscopy and an endoscopy? If not, that will allow them to get a sample and fond out definitively.

I have CVID and Celiac, it really sucks and makes life even more miserable than it was. However, knowing how to live with it is nice. It makes many things more enjoyable.

Anyway, the blood tests for Celiac disease are not reliable as many people that have Celiac disease show up negative in the blood test.

Are you really sure you have Celiac. Have you GI issues totally resolved with the gluten free diet? If not it could be a combination of bacterial overgrowth.

There is currently a study at NIH looking at GI issues on PIDD patients. The primary researcher believes Celiac is totally over diagnosed in PIDD patients and in reality does not occur often. There is an Irish study that confirms his believe. The incidence of Celiac in Ireland is far greater than in the US. However when they looked at the PIDD population they found much fewer true Celiac patients the statistically should have occurred. He never said it does not occur, he just feels it is incorrectly diagnosed with great frequency.

One endoscope will not give a gold standard diagnosis for Celiac. The absolute diagnosis requires two. The second one at least 6 months after going on a totally gluten free diet. If the endoscope shows significant improvement they can make a reasonably certain diagnosis.

The standard blood tests are useless in a PIDD patient. They look at the IgA protein. Since PIDD patients are getting their Immune globulins from a bottle, they are from a pool of other people. They are really testing the pool of plasma donors for Celiac.

The second test is genetic. If you test negative for both genes you can not have celiac. The problem is the test is only a rule out test since about 1/3 of all patients test positive for one of the two gene mutations.

Get on the fast track and educate yourself on Celiac Disease. Go ahead and start a Celiac diet and adhere to it most strictly! If you begin to feel better, then chances are you have Celiac Disease. Also, find a physician who will let you take Immune Globulin as soon as possible. Read up on that as well. There are comorbid issues with Celiac Disease which could damage your nerves and cause skin erruptions. I don't care if you have the greatest physician in the world, you must be responsible and accountable for your own health. Keep posting and let us know how you do!