Guest guest Posted September 21, 1998 Report Share Posted September 21, 1998 In a message dated 9/21/98 3:14:35 PM Central Daylight Time, SDidinsky@... writes: << and Marge. >> welcome and Marge Jane Mom to 5-24-97 (GERD, EG/MSPI/G-Button) 11-2-95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1998 Report Share Posted September 21, 1998 <http://www.c4isr.com/harlow>> Thanks I will need to spend some time checking out all the info on your page...looks interesting...one thing I noticed...you mentioned reflux about an hour before feeding pump is finished in AM...I have been caring for kids with G tubes/buttons/mcKey's ect for over 20 years and our almost 4 year old daughter is the first to do that..but it was sure good to hear it has happened to others as well...also I have used gallons of propulsid and found it to be very effective.. Anyway glad to be a part of all this..will tell more about us in the next day or two... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1998 Report Share Posted September 21, 1998 Welcome to and Marge.. rather than bore the list with our HUGE family and dealings wih eos esophag, you can get the info from the link below. Again, welcome. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 >We have several new members. Please welcome them. And all the new members (and >you know who you are) please send an introduction to the list when you get a >chance. > Hi all, I guess I'm a newbie! My name is Kenny, I'm 39 and live in the SF Bay area. I've been living with (diagnosed) eosinophilic gastroenteritis for around 4 years, and now know, undiagnosed for a few more. I have a long history of food allergies, but they all got very bad around the time of my first EG episode. Oh, I also have acute colitis, reflux esophogitis (sp?), eczema and serious food allergies. After being on a strict food elimination diet for around 10 months, I can now say with fair certainty that my EG is definitely food triggered. The triggers that I have found so far are: soy, corn, green pepper. I suspect that some of my other severe food allergies will also trigger an EG episode, but I have not been able to confirm them (and hope I never have the chance). Most of my (amazing) reclamation of my health has been on my own, once I was personally convinced that food was the main cause of the EG, eczema, foggy brain etc, which were the typical problems that had plagued me for years. NONE of my *many* doctors suspected food as the cause to all my ailments, and even when I told them I was going on the food elimination diet, they all gave me a look that " I was wasting my time " . I now tell THEM how to treat me, and tell them what medications I should be on, and what dosage. I guess the old saying that " you have to be your own doctor " is true. The transformation and ability to regain control of my health has been nothing short of amazing. It seems to me that once you know the triggers, that you can lead a reasonable life with EG, and not be in the hospital a few times a year. I hope to learn more about my disease from this group, and hope I can assist others who might suspect food as one of their triggers. Best regards, Kenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Dear Kenny: Welcome. You will be a welcome addition to our group. Most of us are mothers of Kids with EG and related maladies. Your prespective I am sure will be greatly welcomed by all of us. The majority (I think there is only one girl) are parents of boys and from my understanding EG effects boys much more frequently than girls. I have 3 boys, all were effected with reflux, but only Clayton has EG and required a Nissen and a g-tube. He has severe food allergies to - so far - milk, soy, eggs and wheat. He is a food refuser and eats very little by mouth - although he has the ability to and can eat a limited diet of rice, corn, oatsand some fruits and vegetables. Welcome again and feel free to jump in at any time. Love, Sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), g-tube, Nissen and possible latex allergy, some DD, undiagnosed neuro issues and sensory integration disorder) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Hi Sharon (and group), I figured I'd open up my response to the group in case others are interested... << A Nissen is anti-reflux surgery were they wrap >the stomach around the esphagus to prevent reflux - food cannot go up and >cause damage. Clayton had severe reflux cuased partially by his EG. While my EG tended to cause reflux, it was all linked back to the foods that triggered my EG in the first place. While being food-allergen free, I have had zero problems with reflux. )>> We can always tell when he puts something in his >mouth that he shouldn't because his excema flares up or he is screaming in >pain. It is at the point that because of this he really puts very little food >in his mouth - but does put toys and paper and such in his mouth. Well, it almost sounds like me at age 39! Now that I know that food is such a severe trigger for me, I'm afraid to try and expand my diet over what I know I can eat. But this will likely be a problem too, as I will likely develop allergies to the limited foods I do eat now. A rotation diet is really not feasible, as there are a very limited number of foods I currently can tolerate. << Unfortunaltley in our case apparently Clayton's >allergies are not IgE medicated ones and he will skin test negative to the >foods that he is highly allergic but on endoscopy biopsies of his stomach >following ingestion of these foods there are high eosinophil counts. I realize that many food allergies are not IgE mediated, and will not show up on skin tests. I asked if you had IgG tests done.... these test a different antibody, and there are a number of IgG positive foods that do not show up on my IgE test. Most old-school docs poo-poo the IgG test, but it was a key in understanding my allergies, and ultimately my EG triggers. The IgG-only reactive foods are definately a problem for me. As with Clayton, EG is just one result of my food allergies. Eczema was even less tolerable than the EG, as it covered my whole body, and I was an absolute mess (I'll save you the description). In addition to eczema, I also had memory problems, lack of concentration, and can easily go into a kind of stupor if I eat certain foods. MANY of the foods that trigger the eczema, memory, and concentration problems are IgG triggered, and NOT IgE mediated responses. Anyway, gotta get back to work... will talk to you later. Kenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 Vicky I dropped in to see Louise yesterday after my debacle and she looked terrible. She was having awful trouble with nausea. Let's hope she is feeling better today. New members Hi everyone I spoke to Louise yesterday, she had her operation on Tuesday a Sunnybank Hospital she seemed really upbeat and is looking forward to going home, and starting her new life with the Band. Cheers Vicky ( with a Y) Brisbane ozband website: http://www.ozband.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2001 Report Share Posted November 21, 2001 > Welcome Tom and Rich!! > Hey Steve, were you talking about me when you mentioned that a couple > here were experts in the polyethylene implant surgery? HA HA HA HA HA > I would be flattered if you were indeed speaking of me!!! Who else?? Always great to have an expert like yourself on board!! Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 I checked my e-mail this morning...and there are 5, count em 5 new members!!! We are now 89 strong! To the new members...Welcome...and post your questions. Our members have a lot of experiences/information to share. To the "veteran" Members...keep up the good work! We are helping out a lot of people. Steve Quote Link to comment Share on other sites More sharing options...
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