Negative For Celiac, But Had 3rd Pancreatitis Attack

[rvagirl]

Ok, I'm really really at a loss for what's going on inside me, and apparently all of my doctors are, too. After several years of feeling generally crappy, I tried going on the Celiac diet after my gastroenterologist had suggested it back in early September. After being on the diet for about one 1/2 months, I was noticing just a slight amount of difference because I was starting not to be as bloated and gassy as much. Then, just as I was feeling alright for once, I had a horrible pancreatitis attack that landed me in the hospital for three days. I had my gall bladder out 5 years ago when I was 16, because I had a pancreatitis attack and gall stones. About one 1/2 years ago, I had the second episode of pancreatitis which was worse than the first, but not nearly as bad as the most recent episode back in October. Since then, I had several more tests done for everything from Hepatitis to Celiac, and every single one of them came back negative. My GI also told me, though, that pancreatitis is more common among Celiacs. I maintained the Celiac diet until late December when I figured that since everyone seemed to think I didn't have the disease, I may as well not stay on the diet. I also took a Celiac genetics test, in which it was discovered that I don't even have the gene to develop Celiac. However, my GI told me that since I'd been on the diet for a few months at the point of the tests, my system could have been Celiac sprue free just at that time, but it could come back. So, a couple days ago, I put myself back on the Celiac diet because I'd started feeling really crappy again. I'm also really nervous about the pancreatitis coming back since none of my doctors can tell me why I even got it in the first place. You can't prevent something when you don't know the causes, so I'm just really clueless as to what's going on with my insides! This stuff has kept me from going away to school because I'm terrified of being away from my family and my doctors after the last pancreatitis episode, which is alright because I'm still going to a good college close to home, but still. And I've wanted to be a cop for my entire life, but the PDs around here have basically told me that I don't pass their medical screenings, especially because it's all undiagnosed and my health can be a danger to myself and others, so I'm just at a loss as of what to do. Sorry to type all this for so long, but I'm just wondering if anyone else has had this problem with pancreatitis. I was almost grateful for the pancreatitis, though, because it was proof to my doctors that something is actually wrong with me, since half the time they act like I don't know what I'm talking about or I'm making it up or something. I'm just really frustrated, so if anyone out there can commiserate or has had any similair experience whatsoever, please let me know. Thanks so much, y'all.

[ravenwoodglass]

I am so sorry you are going through this. I have had pancreatitis and it is miserable. I would keep to the gluten-free diet for a while, avoid alcohol completely (that's important), stick to fairly bland gluten free food for a little while and you may want to consider dropping dairy for a bit. Some folks, myself included, have gotten a lot of help from pancreatin, but you should clear it with your doctor before trying it. A good health food store should carry a gluten free variety. I found that red meat really gave me problems for a bit so I went with fish and chicken and veggie sources for protein, but you go with what your tummy tells you.

Don't give up on helping others through law enforcement. There are many fields other than police work available that you may do well in. There are youth services, drug and alcohol education and prevention, parole and probation officers. You could do support staff for courts, law clerk, advocacy for victims etc. I know it is disappointing to have to change course in the middle of the stream, so to speak, but often it is just those changes that turn out better than we could have ever expected. Right now do what you can and don't be to hard on yourself if things even get 'put on hold' while you are ill. I do hope you get some relief soon and I know others will have more helpful input for you.

[rvagirl]

Thank you SO much for your reply! I really appreciate it. I'll definitely talk to my GI about the pancreatin stuff when I see him again next month. What exactly is pancreatin and how do I get some? Yeah, I turned 21 in July, so I really only got to enjoy being that age for about a month or so, but I'm not a big drinker anyway so I don't miss the alcohol so much, only sometimes! but yeah, I haven't had a drop since the attack. It just sucks not knowing what is going on, and the doctors don't have any answers, then they'll tell me it's one thing and then I'll have the tests and it's not that at all, so it's crazy. I'm actually looking at becoming a drug treatment specialist within a Federal prison within the year after I graduate with my Bachelor's, so I'm determined to go into the law enforcement field. It's just so depressing sometimes thinking that I've waited my entire life and did all the right things and avoided all the bad so that I could pursue my dream career, and I go to the range all the time and have gotten really good at shooting, and now it'll just never happen for something that's out of my control. But, I try to look at the bright side and I'm just grateful that it's not worse, you know. But, thank you again, I really do appreciate your response and your encouragment; it means a lot to me.

[alamaz]

Have they looked into pancreatic stones? My grandmother was just hospitalized before Xmas with this. She is similar to you, had her gallbladder out etc. and is now developing stones in her pancreas. They had to surgically remove her stone and I think they found it on a CAT scan. I'm not sure about much more beyond that. I hope you figure this out soon. I had one gallbladder attached before going gluten-free and it was by far the worst pain of my life so I sympathize!

[ravenwoodglass]

Pancreatin is a supplement you can get at either the drug or natural food store. It contains amylase, protease and lipase. These help to digest (break down) carbs and proteins and fats. They also help you absorb the nutrients from your foods a bit better. I took just those for a couple of months but now take a product form NOW called Super Enzymes that has the same stuff plus pepsin, papaya and papain + a couple of other enzymes. For me this stuff has helped so much. I am gaining weight again and can eat beef and bacon and gluten-free pizza with no ill effects.

You mentioned you had been on the diet for a couple of months with a bit of success. How strict were you with the diet? Are you taking any otc or script meds? Those can have gluten and need to be checked. Are you living in a gluten free or gluten filled environment? I am wondering if perhaps a glutening could have triggered your pancreatic episode, it certainly would not be unheard of and I have had it happen more than once.

I would do a couple things as soon as you can, one I would get back on the diet strictly, call your doctor and leave a message with the nurse asking about the enzymes, the should be able to call you back with an answer, check any meds you are on for gluten content, and for at least a little bit drop dairy from you diet also. If you are having issues with gluten then you are likely not making the enzyme you need to digest dairy. Cutting it for a bit when you healing can speed up the healing process.

I hope you are feeling better soon.

[ShayBraMom]

Well, even though you are NOT Celiac, you can be still gluten-sensitive! which means youhave all the effects a Celiac gets, it just doesn't attack the intestine! Bloodtests can be sometimes even negative with a fullblown Celiac actually, tha'ts why as of right now a Intestinal Biopsie is still goldstandart, only there the final clue can be found. Another hint could be is yeast! It causes all the symptoms and then some you have! yeast lives in all of us, and is usually in small amounts also benefitial, BUT with some people a constant overgrows of yeast starts as soon as they eat anything with wheat/gluten in it, yeast lives off of the sugar that gets produced by eating noodles or anything with wheat in it! I would recommend that you should put yourself on a aboslute wheatfree diet for at least 3 months , in that time you should try to also avoid white sugar, in or on anything and as much of soda as you can. You can try to "dry" the yeast up. after that you can try to slowly go back on regular stuff, but keep it in check! As soon as you startt feeling abit worse, try to take a step back again. Dr. Shari Lieberman, one of the nations top 4 nutritionists acutally wrote a book aobut Gluten and it's effects on yeast overgrowth, listing all the symptoms you got as well! Mabe there is even a test to check on yeast! Either way, if you feel better on g;lutenfree it's always the right diet for you! Big hugs and I hope you feel better! Let me know if it helped any or if you find outmore, I"m very curious!

Ok, I'm really really at a loss for what's going on inside me, and apparently all of my doctors are, too. After several years of feeling generally crappy, I tried going on the Celiac diet after my gastroenterologist had suggested it back in early September. After being on the diet for about one 1/2 months, I was noticing just a slight amount of difference because I was starting not to be as bloated and gassy as much. Then, just as I was feeling alright for once, I had a horrible pancreatitis attack that landed me in the hospital for three days. I had my gall bladder out 5 years ago when I was 16, because I had a pancreatitis attack and gall stones. About one 1/2 years ago, I had the second episode of pancreatitis which was worse than the first, but not nearly as bad as the most recent episode back in October. Since then, I had several more tests done for everything from Hepatitis to Celiac, and every single one of them came back negative. My GI also told me, though, that pancreatitis is more common among Celiacs. I maintained the Celiac diet until late December when I figured that since everyone seemed to think I didn't have the disease, I may as well not stay on the diet. I also took a Celiac genetics test, in which it was discovered that I don't even have the gene to develop Celiac. However, my GI told me that since I'd been on the diet for a few months at the point of the tests, my system could have been Celiac sprue free just at that time, but it could come back. So, a couple days ago, I put myself back on the Celiac diet because I'd started feeling really crappy again. I'm also really nervous about the pancreatitis coming back since none of my doctors can tell me why I even got it in the first place. You can't prevent something when you don't know the causes, so I'm just really clueless as to what's going on with my insides! This stuff has kept me from going away to school because I'm terrified of being away from my family and my doctors after the last pancreatitis episode, which is alright because I'm still going to a good college close to home, but still. And I've wanted to be a cop for my entire life, but the PDs around here have basically told me that I don't pass their medical screenings, especially because it's all undiagnosed and my health can be a danger to myself and others, so I'm just at a loss as of what to do. Sorry to type all this for so long, but I'm just wondering if anyone else has had this problem with pancreatitis. I was almost grateful for the pancreatitis, though, because it was proof to my doctors that something is actually wrong with me, since half the time they act like I don't know what I'm talking about or I'm making it up or something. I'm just really frustrated, so if anyone out there can commiserate or has had any similair experience whatsoever, please let me know. Thanks so much, y'all.