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  1. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    Hey LL, first off thank you for the long reply, I really appreciate the info you provide me with when you post! A few things to respond too: The pain usually its sort of dull on the mid upper right quadrant. I get that with sometimes with tenderness and a gassy feeling like I constatnly have...
  2. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    But wouldn't that have shown up from one of the tests? I got bloodwork (lipase:35) xrays, catscans with barium, ultrasounds, hida scans, and none of them pointed to pancreatitis.
  3. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    Pancreatic elastase test came back >500, so they're saying I'm not pancreatic insufficient now ._.
  4. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    Hey LL, hopefully I can get some more answers soon, as they did a stool sample and some more bloodwork. She suggested that I might not need the enzymes yet, as I'm not totally pancreatic insufficient at the point and that most of my problems are stemming from the gatroperesis. But yea, that...
  5. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    Hey, what's up, I haven't gotten them back yet, just sent out the bloodwork for them this weel, but I am anxious to see what the results are. They told me they think I have a mutation that just effects the pancreas and is pretty rare, but won't know for sure until they get the results. My lung...
  6. M

    new jersey cf care

    Hey what's up, I'm from the area and also have medicaid. Medicaid has been great for me, covers all my prescriptions so far and appointments and haven't had to even pay a co-pay yet for any of it. I go to the Robert Wood Johnson adult CF center in New Brunswick, NJ because that's where I was...
  7. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    Hey guys, I went back and told them and after looking at my bloodwork they said because of my lipase numbers the fact that I have no vitamin deficiencies, they believe that I'm not pancreatic insufficient yet, so they took me off of them. I have a ton of stomach problems stemming from what...
  8. M

    Do those with CF have difficulty digesting protein?

    Everyone is different, but meats can definitely be hard to digest. If you eat a meat you want to stick to lean meats and chew them up really well. I have a hard time with pretty much any meats except sometimes I can have turkey sandwiches. I really want a burger and fried chicken lol -__- If...
  9. M

    Negative reaction to enzymes, anyone pretty familiar with them?

    Hey guys, first off sorry for having a ton of questions, I'm new to being treated for cf and this forum has been great. I was wondering if anyone has ever has any adverse reactions to enzymes? I was prescribed zenpep and every time I take it I have an adverse reaction, the best way I can...
  10. M

    Anyone else have gastroperesis and CF?

    Hey all, thanks for the reply. Yea, right now I'm on erythromicin, it's an antibiotic, that when taken in smaller doses makes your stomach contract. It works better than the domperidone for me personally, but I don't think it's something you can take super long term. When I took the domperidon I...
  11. M

    Anyone else have gastroperesis and CF?

    When I was in the hospital a couple weeks ago they did a cat scan, ultrasound, and endoscopy, would those have showed it? And that's funny you mention that, I actually have miralax at home and take it lol I will bring it up with my doctor and see if he emails me back and what he thinks. Ty for...
  12. M

    Anyone else have gastroperesis and CF?

    Hmm, if you have a chance could you ask him if he had any lower abdomen pain or pulsating when he had this. Also, if I'm going to the bathroom while having this issue, would that rule this out? Thank you for the reply, I really appreciate it
  13. M

    Anyone else have gastroperesis and CF?

    Ratatosk, may I ask how exactly he was diagnosed and what they did to treat it?
  14. M

    Anyone else have gastroperesis and CF?

    Hey I was just reading up on that actually. I just got diagnosed a couple weeks ago and havent seen much difference on the enzymes to be honest, but have only been taking them for a couple days. I lost 40 lbs with this mystery stomach problem and like your son Im going through the same thing, I...
  15. M

    Anyone else have gastroperesis and CF?

    I'm having a hard time putting any weight back on between having the two. I lost 40lbs, with stomach problems before being diagnosed with gp and cf, I'm 5'6 and only weigh 115 lbs right now (male). I was wondering if anyone else has both and if so, how do you manage? I have a VERY hard time...
  16. M

    Alcohol and cf?

    Hey guys, thanks for the replies. I'm still newly diagnosed and just starting enzymes this week, so I'm not going to even consider having a drink until I'm feeling like my health is more stable, but I appreciate all of the honest replies. Bill, I understand there's a difference, but my doctor...
  17. M

    Alcohol and cf?

    Anyone with cf still occasionally indulge in a few drinks? Was wondering if being pancreas insufficient was the same as having pancreatis? I know cf effects your pancreas because of the mucous clogging it up, but is this same same as having pancreatis? If so, I know ithat you can't have any...
  18. M

    26, just diagnosed, advice/input/kind words welcome.

    haha yea, cause I know pancreas flare ups cause elevated lipase, but didn't know if it worked the other way around, as in can elevated lipase useage cause pancreas flare ups. I'll call and ask them today, wasn't sure if it was a dumb question or not, so I figured I'd ask the board on here first :p
  19. M

    26, just diagnosed, advice/input/kind words welcome.

    Hey, I was wondering are digestive enzymes safe to take with pancreas flare ups? I know when you have pancreas attacks your lipase is high, so would taking enzymes with lipase make this worse or is that totally different? Just wondering because I can't get into my cf center until march and have...
  20. M

    26, just diagnosed, advice/input/kind words welcome.

    Hey Bill, yea hopefully I can get some meds that will help on Thursday. I'm going to be going to an Adult CF clinic at Robert Wood Johnson in NJ I believe for my main specialist, but will try to set something up to see Dr. Freedman in the spring like you said, because I've heard good things and...
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