Celiac Disease?

Pancreatitis
#1

Well I had my follow up appointment for my EGD/EUS today. They had found the “striations” on the pancreas which he said today “could” be scar tissue. He doesn’t feel like my pain now is still my pancreas, which I feel he is wrong but anyway… During my EGD he did biopsies of the duodenum and found something with the villi that indicates possible Celiac disease(gluten allergy). They drew blood today to look for the antibodies for Celiac. If it is, then I will be referred to a dietician to learn how to eat with this disease.

As for the pancreatitis, he feels that is it NOT chronic and cannot make any guesses if it will ever be. He wrote me a script for enzyme bloodwork to keep with me in the case of a “bad day” I can just go get my enzymes checked to see where they are. At the warning of everyone here, I decided to not have the ERCP at this time. If I have another AP attack that is confirmed with bloodwork, we will do the ERCP after I get better from it, the doc agreed. I feel this is a conservative why to go. I just don’t want to jeopordize the fact that my good days out number my bad right now.

He still feels that the enzymes would be a waste of time. I am not sure what to think. In my opinion, I am having pancreatic pain, maybe celiac pain too but pancreatic pain all the same. I know the pain, it is always the same. I feel that the striations(scar tissue) do mean something because I am symptomatic. Like so many of you here, I feel like I am on the long road to diagnosis. Unfortunately this disease can’t be “found” unless it has already done damage. I had hoped to stop it, but I now realize that it is impossible to stop because if it is happening, it is just happening, kwim?

If I do have Celiac, or eventually CP, or recurrant idiopathic AP, or anything else that comes along, I resolve to continue to find joy in my children, husband and life. I will praise God on good days and bad days. I want to thank you all here that help me in my decisions with your experiences. I do hope to keep posting even though I don’t officially have CP. I do feel like a walking time bomb for another AP attack though. I hate that!

Just thought I would fill you all in.
Pain free wishes,
Keri

#2

hello keri,

I am sorry for all the indecisiveness that is surrounding you at this time but, i as you will wait for the ercp i do not want to chance my pancreas getting angry again. please know because you have not gotten a CP diagnosis as of yet does not mean you do not suffer pancreatic disease. as you are aware that unless the pancreas has taken on change will the CP be official, its frustrating to say the least that this disease causes so much discomfort and still many go without ever knowing the true cause for their pains. i find it amazing that many suffer severe symptoms as in vomiting, pain and bowel changes and still are not diagnosed because their blood work does not identify them as a flare. many hesitate to seek care because of this and they being told so many times that their blood work is negative.

Then the day comes when their pains are enormous and their lives are hanging in the balance. sad to think that we must live as this and as in theresa and her husbands case they were unaware that he had pancreatic disease and they paid the ultimate price for that. i hope you find what it is that pains you and you therefore have the knowledge to recognize the symptoms that may possibly danger you. hope you have a better day then yesterday.

nancy

#3

Hi, Keri–

Celiac disease is often ruled out/in w/pancreatic symptoms since it’s a differential diagnosis (it’s one that can overlap in symptoms). There are a couple of other things that also cross over symptomatically-- including cystic fibrosis genes, other diseases, etc. I wouldn’t get too worried unless you become symptomatic for something else-- I’ve gone through a ton of negative testing, trying not to worry until the results come back.

Also, many of us don’t have officially enough “markers” to be considered CP. Don’t feel left out-- Most of my docs still call it CP when you’ve had symptoms, flares, procedures-- ERCPs, EUSs, etc.) for many months or years. The real definition, other than those famous markers they always look for-- which really indicate the amount of serious damage the pancreas may be showing after a while-- are just markers. When you’ve had pancreatitis for a few days or weeks or even just a few months, it’s considered acute. When it’s been going on for many months or years, it’s chronic by definition. They used to tell me mine wasn’t "chronic,’’ but “ongoing.” Then they said that was a ridiculous thing to say after a year or two or more… so now it’s just chronic. I don’t have many markers, if at all-- but they know the tail has been inflamed for years on ERCPs (doesn’t show up on EUSs), other stuff shows up on CTs, MRCPs, etc.-- but it’s mostly down to my pancreatic lymph nodes and enlarged ganglia according to the last EUS.

It’s a much diagnosis if you ask me-- and with all the large cancer risks of CT radiation exposure in the news lately, I won’t even have another unless it’s really crucial-- I’ve had dozens in the past few years!

I think the trick is to leave the pancreas as alone as possible to keep it quiet, eat cautiously, and believe yourself more than anything. Like everyone’s said, it’s a very specific and different pain, and once you’ve had it, you know better than any test or doc if you have it again or if it doesn’t stop.

As for the enzymes–and also in response to Lindsay’s post, if they help, use them… I recently stopped since I wasn’t seeing a difference. I had been on Creon which caused bad cramps, then pancrealipase (I think) which seemed to work well) but then got switched to Viokase 16-- and even in larger doses, it seemed to be on and off if it helped at all. I’m off them all again-- we’ll see-- but I think it’s very individual and you should try another if one doesn’t work well. We’ve all had differing results from everything pancreatic. Also, most of us have learned that our enzyme levels for lipase/amylase may go up in the beginning and in bad flares, but once you’ve had this for a while, it seem unusual for them to even elevate. Don’t let anyone tell you it’s not CP just because your levels aren’t high. Most of us look like that with normal levels and occasional or constant flares. Keep being a good advocate for yourself, and don’t ever hesitate to speak up and make sure you’re getting what you need.

All the best with many hugs-- and make sure you give yourself a few every day,

Lisa

#4

I know exactly what you mean when you say you know the pain and it is from the pancreas. It is very specific, hard to explain but once you’ve had it, you never forget what it felt like. I don’t know if i was lucky or normal in the amount of time that it took for me to get diagnosed. I was sick for about a year to a year and a half before i was diagnosed. They say that it was early enough that they might be able to stop it or at least slow it down. Seems like it hasn’t ever left yet. I still try to live with daily pain (sometimes so bad that all you can do is lay on the couch and pray for it to end), nausea constantly there and worse when i eat. Then of course with 3 teenage daughters, 1 teenage son, mom-in-law recently passing away(@ 2 weeks ago now), and 3-4 very sick relatives, it seems like it will never end only get worse. Don’t give up on yourself or the doctors. You aren’t crazy, your not making it up, and yes you deserve to have the doctors believe you and treat you for what is really going wrong with your health. Don’t let up on them for a moment, they aren’t the almighty ones some of them seem to think they are. Only you can tell them how bad it is, whats hurting and how bad it is. Don’t let them tell you it’s something else when you know very well what it is. We have all been there and sometimes i think that we are all still there, trying to fight not only the disease but the doctors as well. if you need us we will be here to help in any way we can.
hugs, prayers, and good thoughts your way
Lindia K.

#5

Well Lisa, You were right, I don’t have celiac. I am glad, I’ll admit, but still frustrated that I have no answers. They still say it is not my pancreas at this point, that is causing my pain. I think they are full of &*%^%&. I know it is my pancreas. The PA I talked to today really gave me some time and we talked for about 30 minutes. She will speak to the dr. again, but I am to just call when I feel bad again. I have a standing bloodwork order so If I feel bad I can just go get it done to prove I am sick. They said it could still be the Sphincter of Oodi, and that the MRCP could have missed it if the spasming had stopped. I will have an ERCP only if I get another AP flare. So for now I am in limbo just waiting for it to happen. I know it will someday, the question is when. I will just enjoy my good days and “get through” my bad days here with all of you. I honestly have learned more here from you all than any doctor. Thank you all so much for everything!! Your friend, Keri