Gastroparesis Sufferers

[BritChick]

NoWheatGirl 27, I'm sorry you're having so much difficulty.  I have found that sometimes the food you think is your problem is not actually causing the symptoms.  This was the case for me 10 years ago before learning gluten was a problem and two years ago before learning meat proteins are now an issue as well.  Both times when I was sick I couldn't eat vegetables, especially cruciferous veg.  For me the gluten and then the meats were inflaming my system so much that I just couldn't digest a broad range of other foods.  Once I figured out the root cause, I was OK eating vegetables again.  Both instances in the past it took a long time (months) for my body to recover.  It's been three weeks since I stupidly ate ham after two years of no meat and made myself sick again.  Today I am still struggling (chest pain, back pain, bile in my throat which is just horrible, my throat feels like its swollen).   Interestingly enough Dairy, including cheese seems to now be a problem which hasn't been before.  My mother is celiac and also lactose intolerant and I hadn't linked the two since I haven't had issues in the past so thank you for the lactose info. Over the past 10 years I've learned not to give up hope of getting to a better place.  It isn't easy but my best advice is listen to your body.  I haven't had good experiences with doctors in the past because they have been quick to prescribe a pill rather than figuring out the why.  Sometimes I think we are the better judge of figuring out the why and the fact you've already identified that gluten is a problem is big step to helping your body recover.  Hang in there, Joanna

[gracelynn007]

Dear Friends, I am so happy to have found this forum. I started looking for stuff just related to Gastroparesis and happened to google Gluten and Gastroparesis and found this site and joined.  So here is my story and since I have learned more on my own than the doctors who put me back in the hospital for 2 days and ran up a bill with test of 12 grand, I needed more answers.

 

I will be 50 in July. I have battled with binge eating since I started  having children at age 20. Other than regular problems associated with my weight, I have been generally healthy. 2 1/2 yrs ago I started to get upset stomach and I had the itchies all over. It was horrible. I started losing weight, could not eat for a month. My urine was yellow, stool tan like and I realized my eyes were getting yellow. So they sent me to emergency room. They put me in and it all started. Got scoped, couldnt see anything. They said my liver enzymes were high. Adjusted my diet. I would go through these cycles that would always lead back to these symptoms. After MRI, cat scans, full body octreoscans and so on they found a tumor. It was the size of a golf ball and in the head of my pancreas. I was sent to the neruoendocronic specialist here in Kenner, LA. The plan was to do a whipple surgery.  I spent another 4 weeks sick and waiting for the surgery. January 6th, 2013 I underwent a 9 hour surgery. I lose the head of my pancreas, half of my stomach, the duodem, and my gal bladder. I spent 2 days in ICU. I had not eaten the day before, 2 days in ICU and the 4th day in my regular room. I must say, I had no pain after the surgery. I just hated the tube down my throat first day and the drain tubes they left in for 6. I did everything I was told. Used my upper arm body strength to lift myself up. I took pain meds only for my back as it hated hospital beds. Food on the 5th day and 6th day was tough. My system was totall cleansed and fresh and food even tasted different now. The 5th day was the worst nauseau of my life. With meds it got better within an hour. I had a lost of conjestion and needed to blow my nose. The tube had put all this dried stuff way back in my breathing area. Sneezing was hell. They started me on a liquid diet on the 5th day and on the 6th they were trying to feed me solid foods. Including gluten.  When I went home I tried anything that would appeal to me as i was so weak and had lost 20 lbs in one week.

 

3 months after the Whipple I was able to eat pretty much what I wanted. A year later I would have these attacks were I would eat and not only would pain come, but some sort of imbalance that made me feel so bad. I tried alkaselter and that helped once, and another time a walk after helped. It was like pain, nauseau and a horrible feeling of sickness all in one. Those attacks were seldom if I didnt eat a lot in one sitting. I managed to eat what I wanted on and off for the next full year. I did get a case of pancreatitis October of 2013. That was brought on by 5 glasses of sweet like wine. No more alcohol. Last summer I started to have these boughts of what I thought was a high adel hernia. I had done more research and the symptoms matched. They did ultrasound and the doctor scoped me again.  No hernia. He said I was having food reflux. Food reflux had the same kind of symptoms as a high adel hernia. He advised how to help that, and I mentioned to him, my liver and gastro doctor that I trusted, that I was trying to be gluten free. He was usually a sweetheart,  but laughed and said I could eat what I wanted, but in moderation. I said I get hives with sugar and gluten does that as well. He gave me something for hives. I never filled it. I manage the hives by no sugar and no gluten. I cannot eat what I want. That is a crock. I told him hummas helped me feel full and he said it was to fattening. Once again, I knew my self better than he did. I came to realize that if I ate something gluten like or heavy and had something hot, like even tea it would give me an attack.  So I went soda and caffeine free as well. Oh and I have been lactose intolerant since I turned 40, but after the whipple, OMG, 10 times greater. And foods like beans and cabbage have become increasingly horrible to digest.  Last November, 2014 things started to get bad for me again. I had already adjusted my diet in every way. It has become easier to say what I can eat then what I cannot. So last Thanksgiving, I behaved myself, I ate very little, small amounts of turkey, had a few rolls and mac and cheese, that was all ok, but I ate a bunch of ham.  The day after Thanksgiving, I started with an attack. I was so sick with pain and the itchies I went to the nurse and thought she would give me a shot, but some other meds instead.  It was barely manageable for about 2 weeks and I got so sick my then fiance took me to the hospital. Everything was just backed up and not expelling. My liver enzymes were high, I had the itches, the pain was so severe. After some pain medicine and nausea medicine, a few test they let me go home.  I still battled with these bouts of food reflux and horrible pain that would take 24 hours to let me go.  This January I had an episode that was so bad I called an ambulance. It was a Quarter pounder and fries that did me in. Something which I was having twice a month with no problems. The pain was horrible. I couldnt breath. I was dizzy, nauseaus and was dehydrated. I suffered for 12 hours before calling an ambulance. They made me drink the horrible stuff and do an upper and lower gi and all the stuff that cost 12 grand. So I left that 2 day stint, being told my stomach would not empty out. The doctor prescribed, I am pretty sure Reglan. I got is filled, and when I was done reading the side affects, told myself I was going to fix this myself without meds. This time I even ran a low grade fever. 10 days later. I had a relapse of it again. This past Saturday I felt ill again.  The pain was not as bad and I could not understand why salad was doing this to me. I knew it was salad as it was what I was eating with grated cheese and ranch to compensate for not being able to eat much else. My doctor never told me that my stomach not contracting was called, Gastroparesis.  Last night I was educated via discussion places like this. I looked up diets for gastroparesis. However, these diets said to eat gluten, ingest sugar.  A few hours ago, I found this site and this discussion board after googling Gluten and Gastroparesis. I have learned so much since reviewing allof your post. I will keep everyone posted after I adjust my diet. Wish me luck. Grace