New Life With Gastroparesis

I'm trying to learn to live in a new way.  I don't want my life, my fun, my hope to be over, so I'm trying to learn new ways and to change old ones.

I was diagnosed with celiac disease in May of '09, but didn't get much better on a strict gluten-free diet.  After months and many doctors, I was definitively diagnosed with gastroparesis last month.  The doc confessed to being confused.  He says he has never seen a case of gastroparesis that wasn’t connected with either diabetes or long term narcotics use.  I’m tested for diabetes every year because it runs in my family (my tests have always been negative), and I stringently avoid anything potentially addictive (I very rarely even take a Tylenol), so I was a little freaked out when he kept on and on about it.  It’s comforting, in a way, to find others on this forum who have gastroparesis without diabetes, but it also makes me wonder about the doctors.  Opinions of doctors is a whole ’nother story, though.

I’ve lost 65 lbs in the last year and a half, and it has gotten so that every food causes pain, nausea, and severe lethargy.  It was only after I noticed that I would routinely start to feel better about 18 to 20 hours after eating that they thought to check for gastroparesis.

I felt like I got my life back when I found Glucerna (gluten-free form of Ensure).  But even that hurts my stomach if I don’t dilute it with water.  But after 3 weeks of drinking 4 oz. Gluc + 4 oz. water every 1 ½ to 2 hours, I was feeling LOTS better.  I had more energy, the fiber in it had fixed the constipation, the pain and nausea were gone, my hair stopped falling out, I wasn’t having hot flashes and chills (are temp problems associated with blood sugar levels?), I stopped losing weight, and there were several other signs that I was absorbing nutrition again.  I’ve tried all sorts of vitamins, even the liquid ones, and they all greatly increase the pain, nausea, and general irritation in my stomach.  The fact that the Gluc is balanced nutrition really helped without irritating my stomach.

The Gluc is convenient, too.  I can mix it up every morning and carry it with me in a small cooler.  I can take one or two into a restaurant and at least enjoy the social time with friends and family even if I can’t eat.  And I haven’t had any trouble finding it in stores, unlike all the gluten-free food products I was on before.

However, Glucerna is milk-based, and after being on it for 3 months, my asthma has become increasingly worse to the point that I wheeze just sitting in my chair.  My new task is to find a gluten-free, milk-free substitute for Glucerna.  I’m starting to look at the protein powders that body builders use, but I’m having trouble finding both the vitamins and the fiber in a gluten-free, dairy-free product.

It’s got to be out there somewhere.  Maybe someone in this group or community can point me to it.

I am determined to believe my life isn’t over.  The last year and a half has been really hard, and despair is a huge pit I have to carefully avoid, but surely I can figure out how to have a productive life.

Determined,

LiveNew
 

LiveNew LiveNew
31-35
10 Responses Jul 26, 2010

Go you know of a gastroparesis doctor that i could go to in north island I am in waikato area. New Zealand This disease is not fun, and i need some help.please Linda

Were you on Proton Pump Inhibitors for a long period (more than 2-3 months straight)? I have read all over that some gastroparesis can be caused by prolonged use of PPI medicines such as Prilosec.

Yes, I was on Prilosec for years before the diagnosis. Now that I have subglotic stenosis, I'm on even heavier doses.

I am doing clinical research on gastroparesis: Effects of Global Osteopathic Manual Therapy on Patients with Idiopathic Gastroparesis. Looking for subjects to recruit: location: Sonoma County California. Message me if interested and Please spread the word.

I am doing clinical research on gastroparesis: Effects of Global Osteopathic Manual Therapy on Patients with Idiopathic Gastroparesis. Looking for subjects to recruit: location: Sonoma County California. Messsage me for more details and Please spread the word.

I love knowing there are others out there. I found out I had Gastroparesis last year. I have lost around 40 pounds, and at first I was so weak. Now I'm learning what I can and can not have, but like you lactose is right out. I know we are lucky compared to others with much worst problems. But it still really gets me down some times, this never ending hunger and nothing to eat. But we DO still have our lives, and we will live them to the fullest!

I hear you. I finally found a mixture of three protein drink mixes plus some liquid vitamins. It took a LOT of trial and error. I found the drink mixes at health food stores and body builder's stores at first, but now I order them from the internet to get them cheaper. I use LifeTime Life's Basics Plant Protein (no yeast, soy, corn, gluten, wheat, milk, egg, whey, or artificial ingredients) as my main base because it has all the amino acids needed to keep the body from consuming its own muscles. To that, I add Amazing Grass Amazing Meal for more vitamins, and Mega Food High Fiber Hemp Shake for added fiber. I had to experiment with that last one to find out the right amount to keep my colon happy. I also add Puritan's Pride liquid multivitamins and liquid vitamin D. Every now and then I also have to add liquid iron (tastes really nasty) when my iron drops low. Since I haven't yet reacted to soy, I mix 2 Tbsp. of the mixture of the 3 powders with 4 oz water (because they lump in any other liquid) then add 4 oz soy milk. That's about 100 calories in 8 oz. For me, diluting it seems to work better than smaller amounts of more concentrated stuff. I can have one of those drinks approximately every 2 hours so that I don't feel hungry all the time. When I'm at my worst, I have to wait longer between drinks. When I'm at my best, I can now eat solid food.

It took months to find all these powders that were gluten free and dairy free and get all the proteins, amino acids, and vitamins that it takes to keep me healthy.

I wish you lots of luck finding what works best for you.

LiveNew

So glad to find this! I have a complicated history and glad to find others without diabetes. I got sick at 13...try explaining that you don't have an eating disorder to everyone :(. I went through every stomach test known it feels like over 5 years. At the age of 18, a gastric doc did the radioactive egg test and it showed my food not digesting over a 2 hour period. It was a relief. Luckily with the help of some birth control shots to gain weight (it worked a lil too much haha) I gradually got better. I have recently taken a turn back to the worst and do not look forward to it. Im 25 now and I teach 3rd grade so I need the energy! Glad to see others out there! Wishing you all the best!

I can really relate to the need for energy. I hope you find something that you can take in small doses every 2 hours or so to keep up your energy levels. It's been about 2 years now and I'm thankful that I can eat normally most days. Figuring out how to read my body and switch back to liquids for a few days was really crucial.

I wish you the best of luck.

LiveNew

Hi, ExtremeOptimist, I'm so sorry you're going through this, but there is hope. It has been almost a year and a half since my post, and I'm doing lots, lots better even though there has been at least one severe complication along the way. The "asthma" wasn't asthma. It was actually subglottic stenosis caused by the reflux from the GP. I've had 3 surgeries for that this year and can breathe again, but miracle of miracles the GP has gotten better, too. I think it is because the regular, small, liquid diet over about 3 months kind of reset the whole system. I can tolerate solid food at least once a day, now, and most of the time twice a day. I've learned to 'read my system' and know when to switch to a liquid diet for a few days. I still have flare-ups, but my life is approaching normal once again and I am very, very grateful.<br />
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I sincerely hope that the Glucerna helps you as much as it did me. I've found a milk-free, gluten-free, soy-free substitute, and I've found that if I divide a dose of the liquid vitamins over several drinks per day I can tolerate them.<br />
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I hope you find what works for you and that you're feeling better soon,<br />
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LiveNew

Finally I've found someone who knows what I'm going through. My condolenses to all. This is a tough situation. I was diagnosed about 7 months ago and I am really having a hard time adjusting to this and accepting this is my life now. It seems I spend endless time trying to get a handle on this. Keeping hydrated and nourished seems almost impossible with the little bit you can eat/drink. I never thought this hard about food or liquid and now that seems to be all I think about. I have been endlessly searching for information. The last words from the doctor were "the less you eat the better off you will be". I didn't quite understand at first. Needless to say I understand fully now. I will try the Glucerna, Thank you for the tip. About the hot and cold symtoms. I read it may be an infection? I'm having the same problem and going to have it checked out tomorrow. Thank you for sharing your situations. Don't give up. I am an extreme optimist and refuse to believe there is not a cure or solution!!

Thanks, Jen, I go to see the GI doc tomorrow. I will ask her about her experience with gastroparesis. She is the nearest celiac expert to my area. (Dr. Cynthia Rudert, Atlanta, GA) I will ask her to see if there is a similar product that she recommends.<br />
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The Glucerna is also gluten-free and lactose-free, but I think I also need casein-free. I'm thinking it's either the casein, or God-forbid the soy, in the Glucerna that has me gasping for air from the asthma.<br />
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I will also ask about homeopathic remedies to restore nerve function.<br />
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I sure relate to your example of the pumpkin soup. I never know what's going to bring me to a halt. Things that seem safe often aren't.<br />
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It's good to know there's life after GP, and thank you for the encouragement.<br />
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LiveNew

I have had gastroparesis for 5 months now. I don't have diabetes either and it came on after a tummy bug that I had 6 months ago. I have spent the last 5 months on a strictly liquid only diet of FORTISIP by nutricia - it is Gluten and Lactose Free but I don't know what the equivalent in the US would be. (I'm in New Zealand) It's important to find a GI doctor that has some experience with Gastroparesis. I have also been seeing a naturopath who has me on liquid supplements that are supposed to help with Nerve Function and they have been really helping. I have been slowly introducing other liquids (runny soups, and fresh vegetable juices) back into my diet and they are doing well. You can reverse it by retraining your stomach, but I really think that you have to spend some time just giving your stomach a rest and letting it heal. I had a pumpkin soup the other night that reacted badly and although I didn't throw it up it spent a good deal of time in my upper part of my stomach and then I was in pain all the next day. It's just finding what doesn't react too badly. It's a long road, but we will eventually get there .... and if we can't eat again .... well food isn't everything. <br />
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Another great website which I'm on the most is INSPIRE.... there are a lot of gastroparetic people on there! All the best... Jen