Functional Abdomial Pain

[BabsV]

So, almost 8 months gluten-free and most of my symptoms have improved, some drastically. My 6 month blood tests show a noticeable drop in antibodies; I am not in the 'normal' or negative range yet but I'm getting awful close. My doctors are really happy about the progress I've made as am I.

The only two things that still are an issue are (1) sleep problems (which they think might be related to an anxiety medicine, tianeptine, that they put me on before I was diagnosed with Celiac -- it was the stage where they were telling me it was 'all in my head' and due to stress...I'm weaning off it now and let me tell you the discontinuation syndrome is NOT FUN!) and (2) continued abdominal pain.

The pain comes and goes...can't link it to a specific food or activity. Some days it is almost debilitating. Nothing I can take over-the-counter makes a dent in it when it crops up. I've had two ultrasounds and a CT scan. They can't find anything. One of the areas that bothers me is near an incision that was made for laparoscopic surgery to repair a hernia that was done well prior to my Celiac diagnosis. So the doctors are voting for: functional pain (meaning they can't find a cause) OR maybe some sort of nerve damage or problems with adhesions that developed after surgery.

Two gastroenterologists plus my PCP have recommended tricyclic antidepressants (TCAs) at low doses and at this point I am willing to try anything. We move back to the States in less than 3 months and then shortly after that my husband heads to Iraq for a year. I need to try to get this under control before he leaves because single parenting is gonna be tough feeling as cruddy as this makes me feel some days.

Has anyone else had an issue with abdominal pain that nothing seems to help? Has anyone else been on tricyclics? It looks like the main side effects are sleepiness and dry mouth. Honestly, at the doses they are talking (starting at 10mg and only gradually increasing as needed) they don't scare me as much as Cymbalta does which is what they wanted me to try first...one dose and I was horribly ill for 24+ hours so I'm never taking that one again!

Thanks.

[frieze]

So, almost 8 months gluten-free and most of my symptoms have improved, some drastically. My 6 month blood tests show a noticeable drop in antibodies; I am not in the 'normal' or negative range yet but I'm getting awful close. My doctors are really happy about the progress I've made as am I.

The only two things that still are an issue are (1) sleep problems (which they think might be related to an anxiety medicine, tianeptine, that they put me on before I was diagnosed with Celiac -- it was the stage where they were telling me it was 'all in my head' and due to stress...I'm weaning off it now and let me tell you the discontinuation syndrome is NOT FUN!) and (2) continued abdominal pain.

The pain comes and goes...can't link it to a specific food or activity. Some days it is almost debilitating. Nothing I can take over-the-counter makes a dent in it when it crops up. I've had two ultrasounds and a CT scan. They can't find anything. One of the areas that bothers me is near an incision that was made for laparoscopic surgery to repair a hernia that was done well prior to my Celiac diagnosis. So the doctors are voting for: functional pain (meaning they can't find a cause) OR maybe some sort of nerve damage or problems with adhesions that developed after surgery.

Two gastroenterologists plus my PCP have recommended tricyclic antidepressants (TCAs) at low doses and at this point I am willing to try anything. We move back to the States in less than 3 months and then shortly after that my husband heads to Iraq for a year. I need to try to get this under control before he leaves because single parenting is gonna be tough feeling as cruddy as this makes me feel some days.

Has anyone else had an issue with abdominal pain that nothing seems to help? Has anyone else been on tricyclics? It looks like the main side effects are sleepiness and dry mouth. Honestly, at the doses they are talking (starting at 10mg and only gradually increasing as needed) they don't scare me as much as Cymbalta does which is what they wanted me to try first...one dose and I was horribly ill for 24+ hours so I'm never taking that one again!

Thanks.

where is the pain,and have they done a HIDA scan?

[BabsV]

where is the pain,and have they done a HIDA scan?

On the left side, starting right below my breast, next to my ribs, from below my sternum and down. Sometimes it seems to wander over to the right but it never happens only on the right side. No mention of a HIDA scan. They said nothing showed up on the CT scan and they don't think it is my gallbladder. Sigh. I'm in Poland and they are great with diagnostics as long as it is something like a broken bone that will show up on an x-ray. Otherwise you are in BIG trouble...doctors 'specialize' to the nth degree so you have to wander from doc to doc, each of which will put you on at least 1 prescription medicine and 1 herbal supplement. Then tell me that I can still eat potatoes although I can't drink beer since I have Celiac. Then pat me on my head and send me on my way. I've been waiting almost 6 months for a bone density scan because the machine is down for 'servicing.' I kid you not. Welcome to 3rd World healthcare!

[pricklypear1971]

I had weird, traveling pain across my chest area. Turned out to be ripped cartlilidge between my ribs. Cartridge doesn't show up on X-ray, and doesn't have nerve endings...so the "paIn" travels until it hits a nerve ending. I had X-rays, ekg's, barium X-rays (which also showed stomach ulcers an hiatal hernia).

Dx'ing the cartlilidge tear was a tough one, and the internist only did it by listening and asking about my last 6 months activities - flu, car wreck that seemingly had no injuries. Flu coughing+car wreck tore the cartlilidge. Took FOREVER to heal. Tore twice again- was like getting shot. Sounded like I a gunshot, too (at least to me). Was never clear what pain was ribs, what was ulcers. But doc agreed it all probably hurt like hell. And it did. Would hit like a wave and felt like a travelling heart attack and punch in the stomach. I just wanted to sleep to hide from it.

Anyway, I doubt this story helps except to show how multiple things can happen to equal a big pain in one spot. It can be tough to figure out what is going on.

[BabsV]

Anyway, I doubt this story helps except to show how multiple things can happen to equal a big pain in one spot. It can be tough to figure out what is going on.

Actually it does help because it reminds me that not every little twinge (or not so little in this case) is necessarily related to Celiac. I did have more abdominal pain prior to my diagnosis but that was below my ribs down to near my belly button -- it felt inflamed all the time and I didn't want anything touching it. It hurt to ride in a car on a bumpy road...that's how bad it was. That is all gone at this point so I'm thinking that was Celiac related. This pain is in a completely different place and a different type of pain. I think the doctors are just to eager to blame everything on Celiac and to tell me to just live with it. I'm tired of waiting for it to get better without trying to do something about it. I have an appointment with a psychiatrist on 16 April -- because my PCP and the gastroenterologists won't prescribe TCAs (that whole specialization thing rearing its ugly head again.) I have a feeling they are going to give me ANOTHER test for depression, etc. as they've done 3 times so far. Gesh, every test shows I not depressed or anxious or whatever. I just have pain. ARGH! Less than 3 months until I return to the States. I cannot wait. There has got to be a doctor in the Washington DC area who will be able to address this; at a minimum I know there are pain management specialists which don't seem to exist here!

[Skylark]

Usually the pain management doctors are neurologists. I had myofacial back pain and it was a neuro who put me on a TCA and then ultram when I didn't tolerate the TCA. He also was smart enough to prescribe physical therapy. Physical therapy and a TENS unit sorted the whole thing out in a matter of months. I don't know that yours would be amenable to PT, but after my experience I would recommend a neuro who is good with pain.

[BabsV]

Thanks Skylark. The doctors here in Poland don't seem to want to address the pain issues...they are definitely taking a wait and see approach. But it's been almost a year and I'm exhausted. Grrrrrr. I'm limiting dealing with doctors because they all seem to contradict each other, and I haven't found one who seems to have any real understanding of Celiac Disease even though I'm really starting to think this isn't Celiac related. My hubby went to a couple neurologists when we first arrived (almost 3 years ago) because of pain with his neck/shoulder -- they literally only listened to his complaints, didn't do any sort of exams or tests and whipped out prescriptions forms to put him on a variety of medicines. He came back stunned that they would literally just take him at his word and start dispensing pills with no kind of diagnostics (or even touching the area!) at all.