Still fighting for diagnosis... advice, please?

[Arin B]

Hello friends,
I joined this past winter but have not been on the forum for several months... as my doctors couldn't find Crohns and sent me home with another IBS/ mysterious gut infection diagnosis. They've put me on Flagyl which has helped tremendously, Elavil for pain (but I gained 15 pounds and took myself off) and now Celebrex (400 mg a day). But I'm still not well. I'm stilll having awful bouts of diarrhea (only one bloody spell), nausea, fatigue, weird sores on my legs, in my mouth. My eyes swell up periodically and cause me great discomfort. The pain in my knees, feet and hands is getting worse.

I had all the "scopes" done last year, but nothing. Blood showed nothing. Only NOW, several months later, I had the tests done again and my rheumatologist sent my results back as positive inflammatory bowel disease via IgA and IgG. One is at 31.4 and the other at 100. I've not been able to speak with him, only recieved a letter in the mail that says the results prove "may have an auto immune disease which may be contributing to my sickness." But maybe not.

Well... I knew that before. Am desperate for some answers. Does anyone have experience with IgG and IgA and what it means to have these elevated levels?

I SO appreciate your help and perspective on this matter. Good health to you all!!

 

[drew_wymore]

Hi Arin -

Without the context of what tests your doctor specifically ordered relating to IgA and IgG I can't be sure what those results mean. If those are total serum counts for those specific immunoglobulins it sounds like you have what I have which is called Common Variable Immune Deficiency otherwise known as CVID. As other members here know my story, I too fought for almost 3 years for a diagnosis - I know how hard and frustrating it can be. I had symptoms similar to you except for the leg sores. I was diagnosed with then undiagnosed with Crohns so many times I lost count.

If you have questions about those those IgA and IgG tests feel free to private message me and we can discuss them more in depth =)

Drew-

 

[uab grad student]

Hi Arin,

I don't know about the IgA and IgG tests since, to my knowledge, I haven't had them. I had "IBS" however for years and had several others signs of Crohn's which were ignored ("staph infection" of my legs, which I think now could have been Crohn's related, and episcleritis of the eyes). I know you said you've had scopes done but did they ever do anything called a small bowel follow-through? My GI said they can miss things with the scope and the followthrough is sometimes the only way they can see what is going on in the small intestine (where much of the disease often is with CD).

I know it is frustrating being sick and not being able to tell others why, but keep your confidence... you ARE sick, its not in your head, they just don't know why yet. I don't know about CVID, but I think that is def something worth looking into.

Best of luck and I hope you get some real answers soon!

 

[bethyd78]

Aron
I don't understand about IGA tests so I can't help you there but I do know about Celebrex and it is in the class of anti-inflammatories and it's use is strongly not recommended in pt's with IBD. I would try to avoid it until you can get advice from your Dr. Good Luck
Bethy

 

[Astra]

Hi Arin
welcome back

I do agree with Bethy about the Celebrex but I found a study about it which says that it's ok in the short term, about 4 weeks
http://www.medpagetoday.com/Gastroenterology/InflammatoryBowelDisease/2616

Really hope that they get you on some appropriate meds, Pred or Entocort, or one of the immuno modulators like 6MP
lotsa luv
Joan xx

 

[Arin B]

Hmm.... I've never had a bowel follow-through? It's never been presented as an option. I guess I feel like my doctors don't really take me too seriously. They just keep referring me on to someone else, I have to wait FOREVER for an appointment, and then we start from scratch... all over again. I just don't know why it takes so many weeks to get a doctor to talk to me.

My memories of my former self are fading out of view ... I so miss that girl. I so miss everything that I was and everything I could do.

Ok, enough of my emotional banter. I don't mean to complain; I know everyone here is sick!!

Do any of you have any experience with getting your doctor to see you in a timely manner? I start a new job in June and it's going to be pretty high pressure. If I'm still sick... I don't know what I'll do.