• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Undiagnosed Club Support Group

I just got word that the insurance company denied the pill cam authorization again. Reason given is that my symptoms don't include GI bleeding so they deem it "experimental or investigational." Very frustrated! I just sent my GI doctor an email letting him know and asking what else we can do. He really likes to do the pill cam because it can see the intestinal wall on the inside whereas everything else just looks for narrowing and inflammation (CTE and MRE). Not sure what's next from here. I really hate my insurance. Stupid HMOs.
 

cmack

Moderator
Staff member
I hope things work out for you soon, MissLeopard. People just don't get what we have to deal with, so unfair. Big hugs buddy. Talk to me any time if you need to vent or just to have a chat to take your mind off things.

-C
 
Hi everyone! I thought I'd check in here and give you an update. It's been 2 months since I've heard anything from the doctor who was trying to get the pill cam authorized and I feel like I've hit a wall with him. He hasn't given me any indication that he is willing to do any more tests or move in a different direction. The pill cam has been denied twice by my HMO, so I am not really sure what to do.

Because I am hitting a wall with this current doctor and I feel like he has basically given up on me, I decided it was time to move on. I saw a new primary care doctor recently after my other one was moved from PC to hospitalist care and told her about my issues. She suggested seeing someone in the group that I saw my former doctor in, which was very much against, but I wasn't sure I had another choice. There aren't many GI doctors around here that aren't in that group. Plus, when you are established with one doctor, they give you hell if you try to switch to another. I also had a REALLY bad experience with a doctor in that group in December, right before I was admitted to the psychiatric unit for suicidal ideations because of having to deal with so much medical crap and feeling like no one cared. I'm in a MUCH better place mentally, thank GOD, and I'm in therapy and on the right medication, so there is no risk that will happen again.

Anyway, I went ahead with the referral and called the group. I knew to expect that I would have to talk them out of trying to schedule me with the last doctor I saw. There was no way on God's green earth I would EVER see her again after the way I felt I was treated. She kept telling me there was nothing wrong with me and I didn't need anymore tests. But my last GI doctor did the IBD tests which noted antibodies in my bloodstream. I basically had to plead with the representative to change my doctor, but I did not get scheduled with the one I wanted to see - she would not be available until October. I decided to see a different one who is available next month on the 21st and, from reading his reviews on Healthgrades and Vitals, he is very highly recommended.

The weird thing is that I remembered, after getting the appointment, that there is another group of GI specialists associated with the local university hospital that my insurance covers. I have never been to the university hospital for treatment so I'm not sure it's any good, but I'm thinking of looking at the doctor's profiles to see if they specialize in IBD and what kind of reviews they receive on HG and Vitals.

Hopefully, this new doctor on the 21st of August can figure something out. I am so tired of having symptoms and not getting any relief. All the medicine the doctors have given me and everything I've tried over the counter for my diarrhea has not worked. I have to be very careful about what I eat, too, or I get symptoms. :(
 

cmack

Moderator
Staff member
Hi MissLeopard,

I'm glad to hear from you. :) Life is hard and you have to be harder than life. Well, that's my theory anyway. I'm really glad you found a new doc, this brings a new set of eyes to the subject, (you). Great things may happen soon. You can message me or talk here any time to vent. I really like you, and I would like it if you would talk to me if you're upset. I'm non judgmental and I can maintain confidentiality.
 
Hi MissLeopard,

I'm glad to hear from you. :) Life is hard and you have to be harder than life. Well, that's my theory anyway. I'm really glad you found a new doc, this brings a new set of eyes to the subject, (you). Great things may happen soon. You can message me or talk here any time to vent. I really like you, and I would like it if you would talk to me if you're upset. I'm non judgmental and I can maintain confidentiality.
Thank you. I've been really busy with my Master's degree, that's why I haven't been posting. I had to go out of town last month to do my first residency and so the whole program just consumes my time. It's a pretty awesome program and I love it. I'm finally doing something that I love! :)
 

cmack

Moderator
Staff member
You're welcome, MissLeopard.

It's awesome that you get to do something you love! You deserve lots of smiles in your life... I'm very happy for you, my friend. :) No worries about not posting as much. Doing your own thing and being happy is what I wish for you. Keep in touch though... ;)

Cheers!
 
Well, the day is nearly here! I will be seeing the new gastroenterologist tomorrow after a LONG 2 month wait! Please say some prayers that this wait was worth it. Every single review I read online said that he really works well with his patients and he is very down-to-earth, which I think is amazing! I really hope they are honest reviews and that I go in there to find out that he can help me. It's been a long road and I am tired of being in the "undiagnosed club" dealing with symptoms that make my gut hurt! The last 2 months have just gotten worse. I am bringing a list of things to discuss so I don't forget anything and my most recent labs so he can see them.

I am definitely bringing the labs that show I have IBD antibodies (ASCA-IgG positive). I don't know if he'll need to redo them since they were drawn in February, but I am up for anything at this point. I'm tired of being ignored by the other doctor and just want to get somewhere. I also plan to talk to him about the weird ASCA-IgA negative outcome because, usually, you are supposed to have both IgA and IgG positive results. I am not sure why I was only IgG positive, but it could have been that my IgA was low on another test done on the same day (Celiac disease test showed low IgA levels) so it could have been a false negative. The other GI just blew it off as nothing significant though he still wanted a pillcam, even though insurance wouldn't cover it.

I really, REALLY hope this goes well. I need it to go well. 🙏🙏
 
I am also ASCA IgG positive and ASCA IgA negative (and I do have Crohn's),. But I'm also OmpC IgA positive, so the combination of that with the ASCA IgG positivity is consistent with Crohn's.

My understanding of the IBD serology is that testing positive for two or more of the of the five markers below or testing very strongly positive (very high number) for either of the ASCAs is suspicious for Crohn's:
ASCA IgA
ASCA IgG
cBir
CRP
OmpC

The markers FlaX and FlaS are also sometimes run, but they are of less value in making a diagnosis, since they can also be positive in some cases of IBS.
 
I am also ASCA IgG positive and ASCA IgA negative (and I do have Crohn's),. But I'm also OmpC IgA positive, so the combination of that with the ASCA IgG positivity is consistent with Crohn's.

My understanding of the IBD serology is that testing positive for two or more of the of the five markers below or testing very strongly positive (very high number) for either of the ASCAs is suspicious for Crohn's:
ASCA IgA
ASCA IgG
cBir
CRP
OmpC

The markers FlaX and FlaS are also sometimes run, but they are of less value in making a diagnosis, since they can also be positive in some cases of IBS.
Hi Scipio,

I was not tested for cBir on the test, but I have been tested for CRP by my rheumatologist and it is elevated, but I guess not by much because my rheumatologist never thinks it's of any significance. The last test I had, it was a little over 13 points. I'll be interested to see if this new doctor repeats or adds any bloodwork.

Oh, and the ASCA-IgG came back very high at 48.9H.
 
Last edited:

cmack

Moderator
Staff member
It's good to hear from you, MissLeopard. I pray everything goes just as it should. Be sure to let us know how this new doc turns out. I really hope this is the ticket! Cheers!
 
Top