Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Delayed Gastric Emptying is not uncommon either. As Dr Cohen said to you in the chat on Monday - GI problems are some of the hardest for the doctors to manage with a patient who is dealing with Mito. I hope you can get some relief and soon. I know you are frustrated and rightfully so. I get stressed with doctors who seem to shrug off the problems rather than tell you they don't have any answers. Hang in there - as hard as it may be - and hopefully you'll get beyond this and in the course of it, teach some doctors how to handle issues that are not textbook. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Adam Have you ever tried going without milk products? I know that they give me pain and mess me up. Ice cream every so often tastes wonderful. Have you tried plain yogurt? Just thinking out loud. laurie > > Reply-To: > Date: Thu, 23 Sep 2004 18:43:37 -0000 > To: > Subject: Re: Adam > > Hi Gillian, > > No I haven't had that test yet, but they did say we are going to do > it. I think it is worth looking into, since grains are what I had > started back to eating after the gallbladder surgery and after a week > of eating grains, the pain started back up. But I had increased my > fat the day I started having pain too, so I have to look at both > sources of pain. > > But again, I would be surprised if that was all of it. I think I > might have more than one thing going on. I definitely get pain from > foods that are not grain, and today I am even getting pain from > liquids alone. > > I am going to have that blood work and will ask the doctor next > Wednesday to get it done. > > Thanks for that idea...I had forgotten about it. > Adam > > > In , " gillianstumps " wrote: >> >> Did they do the antibody test for Coeliac ..my biopsy was negative >> but the IgG antibody for it were highly positive which gastro said >> is gluten intolerance causing IBS..have found sometimes the biopsy >> readings can vary according to who does them!!! >> >> Gillian >> >> >> >> -- In , " adamm4321 " wrote: >>> Hi Gililan and Debra, >>> >>> First of all, I have not gotten any subset of mito diagnosis at >> this >>> point. No, I haven't been given any steroids. Yes, I have been >>> told years ago by an alternative doctor I may have some adrenal >>> fatigue going on. I had one kidney removed in 2003 and they were >>> able to leave the adrenal gland so I still have two. >>> >>> As for my BP. The GI doc in the hospital suggested that it was >> low >>> from not eating and drinking enough. As a matter of fact, for a >> six >>> week period in the summer, before the gallbladder surgery, I was >>> having daily headaches that were pulsating and pounding and would >>> start off when I woke up in the morning. My pressure readings >> were >>> 130/90 every time they took it during this period. During my >> hospital >>> stay, it averaged around 90/60. >>> >>> I was just evaluated over the summer for dysautonomia, but since >>> during that period my pressure was high, they said I didn't have >> it. >>> I don't have any tachycardia. When I was in the ER yesterday it >> was >>> 112/72. Can you depend on the automatic blood pressure cuff? >>> >>> Yes, they checked my amylase and lipase. That is the confusing >> part, >>> with the sphincter of oddi condition it is usual to expect these >>> enzymes to be elevated and mine arent. >>> >>> The pain that I experience is most definitely triggered by > eating. >> It >>> has not been over the top pain, but moderate. But if I keep >> eating >>> or drinking once the pain starts up, it usually keeps escalating >> and >>> I am sure if I didn't stop it could get over the top. If I don't >>> eat, it subsides and improves. Last time it took 6 days. From >>> figuring what I feel and what I am experiencing, what triggers it >> and >>> when it resolves, I am convinced it is some process of eating > that >> is >>> not working right. It could be more than one problem going on at >> the >>> same time. >>> >>> The test that came back abnormal was the stomach emptying test. I >> had >>> elevated LFTs after taking percocet that made me sick. There was >> some >>> mention of " possible " sprue being seen on an upper GI by one >> doctor >>> and another doctor said my test was normal. But I had a biopsy of >> the >>> small intestine last summer that showed negative for Celiac >> Disease. >>> I had a normal MRCP, and ultrasound. >>> >>> You can see why it is confusing. I don't know, do they have GI >> docs >>> that handle complex cases? I hate to think of starting over from >>> scratch. You know what it is like to get a new appt with a new >>> doctor. Especially if he is any good. >>> >>> Adam >>> >>> >>> >>> >>> >>> >>> >>> >>>> Adam, I am sure you might have mentioned this before and I > can't >>> find it but have any of these doctors checked your amylase >> levels? >>> It sure sounds like you have pancreatitis secondary to all the >>> manipulation of removing your gallbladder. If you don't know for >>> sure I would check into this. >>>> >>>> Best Wishes, >>>> Debra >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Adam Good luck with trying the soy. I like the Boost which is soy and comes in various blends to eliminate other things in a person's diet. The longer I am off milk products, the more able I am to eat some without problems. The lactaid doesn't help me, so the doc feels that it is more of a sensitivity or allergy to the milk proteins, rather than a lack of lactaid to break it down. One os my sons is allergic to the milk proteins and milk sugars. laurie > > Reply-To: > Date: Fri, 24 Sep 2004 13:16:16 -0000 > To: > Subject: Re: Adam > > Hi Laurie, > > Well milk products is a long story. What isn't with me. [g] > back in 1992, I ended up in the ER with bloody stools. They did a > colonoscopy and couldn't find a thing wrong and didn't know what > caused it. I had been thinking I was having trouble with milk for > awhile. I had had pudding that day before the trip to the ER that I > hadn't had for a long time. > > I decided it was pretty evident at that point to me, that I wasn't > handling milk. So I did go off all milk products, and have never had > bloody diarrhea again. I did after awhile discover ways to get the > dairy products back in though. For the longest time, the only dairy > product I used was my own home made yogurt made from non fat milk, > that is processed for 24 hours to take all the lactate out of it. I > tolerated that fine for years and still do. A few years ago, I > discovered a product on the market that is Lactaid milk. It has the > enzyme to digest the lactaid in the milk and it is NON FAT. > > I don't eat ice cream. I do have some non fat frozen yogurt in very > small amounts. I have eaten it often without a problem. When it > does bother me, it seems there is some other variable involved. > Either I increased the amount, or I had meals too close together, or > I ate it too often. > > As for eliminating milk products. I don't see how I can. I have no > other source of protein. I could try using soy products. I have in > the past, but after awhile, I thought they were bothering me too. > So???! I seem to be pretty stuck. > > Thanks for bringing that to my attention though. Maybe I will try > some soy products for a change and see how I do. In the past, I did > go through a period when I was eating more, of rotating my foods on a > 4 day rotation plan. It seemed to make a big difference for me. > Unfortunately, I became more limited in what I could eat and I didn't > have enough choices to rotate with. But I am going to revisit that > again and perhaps I will have a food IgG panel done again. Just to > see if there is any element of sensitivity involved. > > Thanks, > :-) > Adam > > > >> Adam >> >> Have you ever tried going without milk products? I know that they > give me >> pain and mess me up. Ice cream every so often tastes wonderful. > Have you >> tried plain yogurt? Just thinking out loud. >> >> laurie > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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