Gastroparesis, Anything That Might Help?

[ravenwoodglass]

My DS seems to be having problems with this, he always has actually but it has been worse lately. His appetite is poor generally and when he does get hungry it seems he is full on very little. I see him often struggling to eat just a few more bites and his calorie intake is lower than both of us would like. I know there are others here that have had problems with this and hopefully you can suggest more than the 'eat a little every couple hours' that Mom can think of. Have there been any particular foods that have been helpful in stimulating your appetite? Also for those that have had this have you (shudder this thought) gotten relief after eliminating casien. His diet is heavy in dairy and he has so far been resistant to doing a trial of eliminating it.

Thanks for any insight you may have.

[Phyllis28]

I don't have any experience with the this. I can only suggest that you look into liquid nutrition products such as Ensure Slimfast, or protein shakes. I know there are other products like this, but I don't have any names. These may or may not help.

I hope your DS gets better soon.

[gfgypsyqueen]

I've got Gastroparesis too! They took out my gallbladder (it wasn't working either) hoping it would trigger my stomach to function normally. Not the case. I would NOT recommend that option.

Personally, having an appitite is not the problem. Think of Thanksgiving dinner and how full you are afterward, I feel full like that for days after a normal dinner. This extreme fullness seems to work in waves. I will have no problems for a few weeks, and then I am just full always. The thought of cooking dinner is not pleasant.

Here's what has helped for me.

1. Take a food enzyme.

2. Minimize stress. (That is a joke in my life, but try.)

3. Avoid greasy foods. Stick to a low fat diet. That really helps me.

4. Certain foods are just harder to break down for people with Gastroparesis. Skip the broccoli and cauliflower for a while. Google the disease and their are books about it and foods to avoid. Steak seems to leave me full forever.

5. If needed, go get meds (Reglan) from a doctor. The law of deminishing returns applies to these meds. So the longer you take the meds, the less they help. I forgot the name of it, but a drug not able to be sold in the US is sold in Canada and it works GREAT on Gastroparesis. At least that is what my Gastro said would be my final option - buy the meds from Canada.

On diagnosis I was given meds that helped for a while. Once firmly on the gluten-free diet, I have not taken meds in years. The food enzymes really help when I have a problem.

You mentioned caloric intake being a problem. Take some Ensure or something like that. No matter how full I feel, a drink goes down easier than a full meal. Otherwise, when I had problems staying in the safe weight zone, I ate chocolate, PB&J, fortified cereals, yogurts, high calorie donuts, etc. I ate anything I could stomach that had high calories to add a few pounds.

As for casein free...I've had to remove all most all dairy from my diet due to a dairy allergy in the house. Funny enough, I feel better with less dairy. I don't like the dairy free cheeses, so I eat real cheese for pizza and nachos (lactiad helps). Other than that I eat no dairy/casein products. English Bay Potato milk is the favorite non-dairy milk.

Hope this helps!

[bluejeangirl]

I get this problem also and I hate it. What's funny is I'll wake up around 4 o'clock in the morning and I'll feel hunger and wish that I felt that during the day. I'll go back to sleep hoping that I'll feel that way when I wake up. I never do it it drives me mad.

In addition to wheat I avoid foods high in acids because these foods irritate the lining of my stomach and give me a feeling of fullness. Milk does that too because its leaves you acidic. We want to keep a balance with our food choices and eat mostly alkaline foods. Chew very good and relax as much as possible while eating. Our stomach has to reach a certain ph before it moves the food out.

If he's burping 4 or 5 hours after his meals I would take some kind of acid reducers. This is usually an indication that I have to take them to get the acid down a bit. If he's getting gurd and food sits in his stomach then the problem is he doesn't have enough acid or enzymes. Apple cider vinegar helps too with this also.

Good luck with your search,

Gail

[pattij]

Following up on gfgypsyqueen's post, the gastroparesis drug currently available in Canada is Motilium; its generic equivalent is domperidone.

My understanding is that per FDA regulations neither the brand name nor its generic form can be sold in (or shipped to) the U.S., though they are certainly available via online Canadian pharmacies. An alternative approach for those who are uncomfortable going that route is to have the drug compounded in the U.S. Compounding pharmacists in the U.S. can prepare domperidone in capsule form and skirt FDA sanctions.

We just had my husband's first domperidone (gluten-free) prescription filled at a local compounding pharmacy. (I suspect that the tablet form available in Canada is not gluten-free because so many tablets use gluten as a filler/binding agent, but I don't know that for sure.)

I researched compounding pharmacies online and made several phone calls to inquire about pricing. It was only by sheer coincidence that the best price I found was at a local pharmacy.

Domperidone is considered to be a safter motility drug than Reglan, which can cause serious neurological side effects.

I hope your DS gets some relief soon.

[ravenwoodglass]

Thank you all so much for the info. I will pass it on to him.

[Darn210]

My daughter is on Erthromycin which is an antibiotic. She's taking it at a low level for it's side effect which is (of course) increased motility. I think this is one that also doesn't work for the long haul. I am beginning to have my doubts whether she really has gastroparesis. Her Gastric Emptying Study indicated that she did, however, she has never had a problem with poor appetite or not being able to eat a full meal prior to starting the medication or since.

bluejeangirl, are you saying that acid reflux with gastroparesis indicates not enough acid? My daughter was taking prevacid at the time of her GES. Yet when she is NOT taking the prevacid, she "spits up" more often!!!! UGH! I can't tell you how frustrated I am.

I don't even know what kind of questions to ask, but if anybody has any insight, I'm listening.

[Generic]

Prevacid forces your stomach to make more stomach acid. It basically eliminates the acid and forces your body to think uh-oh better make a whole bunch.

[bluejeangirl]

My daughter is on Erthromycin which is an antibiotic. She's taking it at a low level for it's side effect which is (of course) increased motility. I think this is one that also doesn't work for the long haul. I am beginning to have my doubts whether she really has gastroparesis. Her Gastric Emptying Study indicated that she did, however, she has never had a problem with poor appetite or not being able to eat a full meal prior to starting the medication or since.

bluejeangirl, are you saying that acid reflux with gastroparesis indicates not enough acid? My daughter was taking prevacid at the time of her GES. Yet when she is NOT taking the prevacid, she "spits up" more often!!!! UGH! I can't tell you how frustrated I am.

I don't even know what kind of questions to ask, but if anybody has any insight, I'm listening.

It's just my opinion but I think giving alittle child prevacid and antibiotics is just setting her up for worse problems ahead. But I really don't know why she gets worse when you take her off them. Other than maybe its the rebound effect that happens after you stop taking the meds.

Does she have asthma? Or destruction to her vocal chords? That would indicate acid in what she's spitting up. It could be just food thats not leaving her stomach and thats because she needs her stomach making the acid. I can see where your frustrated.

I know peppermint, fatty foods, chocolate are some foods that cause the sphincter muscle to weaken. Or there can be an incomplete closing of the sphincter due to a loss of muscle tone. I think that happens more with hiatal hernia.

I worry about Dysbiosis due to poor gut ecology. Which will get worse if your stomach doesn't have acid and taking the antibiotics.

I would have her chew gum because it helps produce saliva which will coat her esophagus with mucus. She'll hate it but alittle aloe vera juice is great for tummies too.

oh a good test for everyone to use if you don't know if your too acid or not enough (which will give you the same symptoms sometimes) is first thing in the morning when you get up drink about 1/2 t. of baking soda in half a glass of water. If you start burping you have acid in your stomach. If you don't burp you don't have any.

Anyway I wish the best for your daughter how hard it must be for you

Gail

[pattij]

bluejeangirl, I'm sorry about your little girl. Have you talked to her doctor about having her take a probiotic, such as acidophilus? They can help the entire GI tract--not just the colon. In fact, while she is on erythromycin, it might be a good idea for her to be on a probiotic, to prevent diarrhea and/or a yeast infection.

Has your daughter's doctor suggested that she have an upper endoscopy performed, in order to diagnose/rule out GERD? I know you'd want to spare her the stick of the IV needle, as well as sedation, but the test might give you peace of mind.

Hang in there... it's so hard to watch our children suffer.

~Pat

[UCDSurvivor]

Hey UCD here. I am still trying to catch lingo. Who is a DS? I know I have fought intermitant gastroparesis over the years. It was like my whole system would stop. If diet is heavy in dairy -- how much protein is he eating a day? What is body size and weight.

Does he like cherry juice (better than prune juice)? Drinking some through out day may help with movement and it detoxes too (pulls out extra uric acid in body that makes you ache). RW Knudsen has product called Just Cherry Juice (Black Cherry). We think tastes good. And it helps keep me moving. My other solution is one I do not opt for a child. I have a beet juice concoction that will work.

I have the GERD, Barrett's disease, argumentative stomach and intestines/colon. When really picky I have to take dicyclomine for a week or two then can get off of. If really tough, I use to go to a liquid diet for 3-4 days until food was passing through. I also take enzymes and prevacid now. My doc has me on two previcid each morning. If not the whole system starts to go haywire.

My gastroparesis is better since lowered amount of proteins and stay gluten-free and I take my metobolic meds. In fact if I stay on metobolic meds I have no problems because that keeps my system working.

Sometimes I just can't get to meds

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My DS seems to be having problems with this, he always has actually but it has been worse lately. His appetite is poor generally and when he does get hungry it seems he is full on very little. I see him often struggling to eat just a few more bites and his calorie intake is lower than both of us would like. I know there are others here that have had problems with this and hopefully you can suggest more than the 'eat a little every couple hours' that Mom can think of. Have there been any particular foods that have been helpful in stimulating your appetite? Also for those that have had this have you (shudder this thought) gotten relief after eliminating casien. His diet is heavy in dairy and he has so far been resistant to doing a trial of eliminating it.

Thanks for any insight you may have.

[gfgypsyqueen]

Hey PattiJean,

Interesting note for you. Before my Celiac diagnosis the Reglan I was taking for Gastroparesis wasn't working as well so the DR put me on the Erithmiacin (sp?) too. I hated it. Made me loopy. Several months later I finally got the Celiac diagnosis. After being gluten-free for 6 mths or so I stopped taking the Reglan and the Nexium and I am fine now. I take Food Enzymes if I am having a problem.

The interesting part is when my secod child was born and the colic started again (Terrifyingly horrible colic with first child). The pediatrician put the baby on a variety of meds to help with the Colic. When she prescribed Reglan to a baby under 1 month of age, I knew I had a problem. I didn't give it to her. We went to a herbalist and had much better results within 24 hrs! By 9 mths the baby stopped growing at her normal rate. The battle for celiac tetsing started. She is now almost 3 and happily on the gluten-free diet (6 mths) and growing and doing great.

If possible, look into herbalists and non-traditional medicine if you are intersted in alternatives for your child. The herbalist I went to changed my life, my daughters life, and convinced me that a good herbalist is well worth it!

[Juliebove]

I have gastropareis and also food allergies. I can't have any dairy, eggs, almonds or soy (not an allergy but messes with my thyroid). I rarely have an appetite.

I seem to do best with liquids. Stuff like Ensure has been suggested but that contains dairy. Every kind I've found has dairy in it.

If he likes Smoothies, you can make one with rice milk, any kind of fruit that doesn't make him sick and add some rice protein powder to it. You might also consider adding chia seeds for protein. I gel up the seeds in water and eat them as is, but kids might not want to do that.

My diet is very limited. I eat pumpkin seeds, chia seeds, peanut butter, cereal (sorry not gluten-free), ground beef, rice, potatoes, chicken breast, turkey and a few vegetables. Vegetables are the worst for me. I love salad but if I eat too much of it or too often, I throw it back up again. Roast beef is another bad one.

I am overweight so I don't have to worry about eating too little. I also have diabetes so I have to watch my carbs. For added calories he might try sipping fruit juice or sucking on hard candies. Not so good for the teeth though.

[JulesNZN]

Sadly from experience eating baby food is the best nutritional answer at this time for him and getting the right medication. I am taking a medication I order that is not FDA approved but has saved my life. I did not need to eliminate dairy. I see a specialist in Boston at NEMC for gastroenterology and he specializes in this and is familiar with Celiac's. I ate baby food for about a month when my illness was severe and that got me closer to the Caloric intake that I needed to live. Good Luck.

[pattij]

gypsyqueen, thanks for sharing your experience. I can't believe your baby was prescribed Reglan; it's not supposed to be given to children under the age of 18.

I think that the tide is changing as far as how the medical establishment views non-traditional medicine (non-"traditional" is an interesting choice of words, since Eastern practices of medicine long predated our Western ways!). It seems that more and more doctors are trying to combine Eastern and Western approaches to treating their patients, in large part to public demand for the combination. Unfortunately, my experience has been that most doctors are rooted in ways of thinking that are a generation or two old--not even "modern" by today's Western standards.

I'm going to have to go easy on my husband, who was just diagnosed with celiac and gastroparesis a couple of weeks ago. At this point, I'll be happy if he keeps his appointment with a nutritionist tomorrow.

I hope your daughter continues to thrive.

Thanks again.

~Pat