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About pghkid33

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    Community Member
  • Birthday 07/08/1991

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  • Interests
    Hockey, running, agriculture, environmental issues, camping / hiking, laughing
  • Location
    Pittsburgh, Pennsylvania
  1. Thank you, will try to glean as much as I can from this
  2. Hey folks, Does anyone happen to know where I can find a bunch of info about the Specific Carbohydrate Diet (SCD)? I'm in a bit of a bind right now, as I have been having some pretty horrible issues preventing me from working full time (I think I have sibo), and I know that the SCD is supposed to help with sibo. However, I don't have the money to shell out for the book / info that is sold by and can't seem to find any free info out there on what the diet really consists of. Any info that anyone can provide is helpful! Thanks
  3. Not sure if you'll read this, but I'm 23 and I'm kind of in the same boat. I have a few friends that have Celiac, but they're not super close to me (both in terms of friendship and proximity) so we don't really talk to much. I'd love to have someone else to talk to, other than damn doctors or nutritionists haha. I know what it's like to miss school, or work, or social gatherings (it sucks). I'm on here a good bit, feel free to shoot me a msg
  4. Hey man, did removing grains, milk, soy help you at all? You were having continuing symptoms despite being gluten-free? If so, what were they?
  5. Hey, folks. I have been having some ongoing issues for quite some time now, and I tried the paleo for abt. 3 months but gave up because it didn't seem to be helping. I'm considering trying again, after reading this: Just thought I'd bring this research to everyone's attention... pretty alarming isn't it? I realize it's 4-5 years old now, but I can't imagine things have changed too much for the better.
  6. Gotcha. I had a barium ct scan which showed nothing, but maybe I should ask / push for those other tests to be done just in case. None of those other causes of EPI seem too likely. I've been taking my Zenpep basically right before the meals, but I have recently started to take them as I eat. Can't say I've seen too much improvement, however. I also increased my dosage to 120,000 yesterday, so hopefully that will help a bit. Thanks again for the response.
  7. Thank you for the response and the suggestions. I am actually taking 500 mg of Magnesium a day right now, and have been for months. I think the muscle weakness is maybe some other electrolyte, like potassium or calcium. Either way, I still seem to be very easily fatigued, the degree of which varies based on how much or how fatty my BMs are... Sometimes I wonder if I may need to be taking more zenpep, but then I hear of people like you that seem to get better on a much lower dosage! I guess not all cases are the same, but I wish mine would come along a little faster... Can I ask what sort of tests your doctor did to rule out that your EPI wasn't celiac related? My gastro hasn't ordered anything to do so, but I may need to ask him about that. Thanks!
  8. Thank you for the response... I am a 23 year old male, should have mentioned that! It's great to talk to someone who is going through something similar. I actually have referenced that thread several times, it's very helpful, thank you for posting all of that research. My vitamin D absolutely plummets if I neglect to supplement, but my levels have been good with supplementation. Have you had any sort of symptoms that you can attribute to your malabsorption? I have been dealing with severe weakness (muscle weakness, easily fatigued, etc.) for quite some time now because of this, and I am not even able to work at this point. My potassium was also dropping for a while after having large BMs, but that seems to have improved. My BMs in terms of frequency, consistency, seem to be improving veerrrrry verrryyy slowly, along with the weakness and fatigue to some extent. The progress seems to be so slow and uneven sometimes (I'll have a relatively normal BM one day, and the next have horrible cramping and diarrhea), that it's hard to convince myself this is even working. I'm also working with a GI doctor that initially doubted I even had Celiac disease, and doesn't really seem to be able to make the connection between Celiac and EPI, which can be frustrating to say the least. How quickly has progress come for you? I have been taking them since June, so about 4 months now. I'm taking Zenpep 100,000 per meal and 20,000 with a snack... I just want my job and my life back! Thanks
  9. Hi, I realize this is a late response, but I just saw your post. I am currently taking Zenpep myself, as I was confirmed to not be absorbing fat with a stool test back in late July. I have been taking Zenpep for about 4 months. I have been having a ton of trouble putting on any weight whatsoever, but it seems that over the past couple weeks I have gained some fat on my face and on my legs. Not a significant amount of weight, but feel like I am getting some meat on my bones at least. I think it's kind of a slow healing process that I have to go through, personally. Honestly, my primary concern hasn't been inability to gain weight, rather, other malabsorption-related issues like weakness, dizziness, etc. Those have started to improve very slowly. Just takes time, I think. Did you notice that you felt any worse off of them? You may not be gaining weight, but you may find that you feel better while taking them, like me. Also, there is a Zenpep patient assistance program that I have enrolled in myself, given how expensive they are. You may want to look into something like that.
  10. Would recommend this, it's in pittsburgh:
  11. Hi all, I have been having a hell of a time over the past year or so, despite being on a gluten-free diet. Does anyone know of any celiac specialists in western Oregon? (I live near Portland). If not, does anyone know of any celiac disease centers / specialists that offer phone consultations? Thanks, look forward to hearing what you have to offer
  12. Hi, I just stumbled upon this post, and I am actually considering doing it as well, might be starting the soup today. Curious how you are doing so far on it?
  13. I have had muscle twitching, seems to coincide with my bowel issues / malabsorption when it happens. Most likely a vitamin or mineral deficiency, for me I am thinking it might be potassium because I have ended up in the hospital with low potassium a few times and no other deficiencies have ever shown up on blood tests.
  14. Ahh thank you, pretty informative document. Looks like the starting dose for adults is 40,000 per meal... I'm only taking 10,000 per meal right now, just 1/4 of the starting dose. Been pretty sick this morning so have been discouraged, but looks like I have a long way to go to even get close to the starting dose. Not sure why the doc started me on such a low dose. Damn. Would you say that you felt significantly better after starting enzymes?
  15. Pancrelipase is a mixture of all 3 of those enzymes from what I understand. Was looking for the total units of pancrelipase (commonly known as Creon), not just lipase units.