Concerned About My Husband ~ Symptoms....

[lakeslady]

Hello,

New here.....been looking everywhere for answers for my husband.

He's been having symptoms for about 3 years now and we're still unsure of what's causing it. THe doctor's seem to be of no help. He was referred to a gastroenterologist about three months ago due to his symptoms and all that doctor had to say was "eat around it".

I will try to make this to the point as I can:

About three year ago, had symptoms such as severe pain in the stomach, distention, bloating, severe diarrhea, severe cramping....sometimes would have to make himself throw up after a meal 'cuz that was the only way he could get comfortable again. But when he would throw up, his throat and mouth would be burned from all the acid that came up with his food. Sometimes when he would throw up, he could still tell what food it was and sometimes it was food he ate from 2-3 days ago. Sometimes he would eat and the food would feel like it was in a ball in his stomach, not moving anywhere, just stuck.

He had his gallbladder removed, had a colonoscopy and an upper GI test. The only thing they found thru these test was that he had a small ulcer. They said his gallbladder was enlarged and diseased. So figuring it was the gallbladder (now removed) they also put him on Prevacid and told him to take Gaviscon in the evening and not eat 3 hours before going to bed.

Three years later, he's still having the same symptoms. Except his diarrhea is pretty much chronic all the time. They had him do a test where he ate a radioactive egg and then watched his stomach digest it.....it came back "normal".

We can't afford to do anymore tests! Doctors don't know anything.....they're just guessing....in my estimation.

What can we do? Currently he is taking a powder twice a day.....it's called Cholestyramiune Powder.....it's used mostly to lower cholesterol, but they've found that it helps with diarrhea. They think now that because his gallbladder is removed he's having some type of "dumping syndrome" 'cuz there's a lot of time after he eats, he'll get bad cramps, have diarrhea and you can actually see fat/grease in the stool. So it's like his body isn't processing fats at all!

There's so many issues with this and I want to find out how to help him without him taking a bunch of drugs!!

Please help! I've been searching and searching and I want to help him. Is there anyway we can "self-test" him? What would be a good clue to find out if he is a celiac?

Thank you in advance....I truly appreciate it. Oh, another thing is that he has been losing weight....not a lot but somedays his weight will fluctuate by 8 pounds (up and down).......his pants are all starting to fall off of him.

Thanks again. I'm sure I've forgotten something but I am anxious awaiting to hear your thoughts!

[gfp]

I think I would send off for the enterolabs kit....

I think it is the most sensitive in terms of exactly what it detects but then you would have a definitive answer.

Lets hope it is celaic, its easily treatable just by diet and if you are really really strict, especially at first pretty quick...

Quite a lot you describe sounds fairly classic ... so it seems strange they are going to these lengths and haven't tested just to dismiss the possibility.... but then I had ten yrs of acid and gaviscon and pains and cramps and... well thoughoughly miserable and the GI Dr. said take ranitidine and eat round it....

[evie]

Hello,

About three year ago, had symptoms such as severe pain in the stomach, distention, bloating, severe diarrhea, severe cramping....sometimes would have to make himself throw up after a meal 'cuz that was the only way he could get comfortable again. But when he would throw up, his throat and mouth would be burned from all the acid that came up with his food. Sometimes when he would throw up, he could still tell what food it was and sometimes it was food he ate from 2-3 days ago. Sometimes he would eat and the food would feel like it was in a ball in his stomach, not moving anywhere, just stuck.

He had his gallbladder removed, had a colonoscopy and an upper GI test. The only thing they found thru these test was that he had a small ulcer. They said his gallbladder was enlarged and diseased. So figuring it was the gallbladder (now removed) they also put him on Prevacid and told him to take Gaviscon in the evening and not eat 3 hours before going to bed.

Three years later, he's still having the same symptoms. Except his diarrhea is pretty much chronic all the time. They had him do a test where he ate a radioactive egg and then watched his stomach digest it.....it came back "normal". quote

Sure sounds like me for many more years than 3. I did finally find a dr. to sort of diagnose me and I went on gluten free foods. I also had the camera swallow test that showed much problem in the uppr small intestine but another GI said need you to go gluten free for another biopsy. I said "oh no, would not live throught that" so Dr. put me down as "presumed gluten free". Later was having such bad diarrhea I had a test where water then food were watched as they went down thru tummy & intestines 'so fast'. diagnosis was

dumping syndrome. I was told to drink little water/ food, eat small meals and eat 6 times per day, withinn 6 wks was much better.

Since he has had no luck/ reg dr's he might want to go gluten free and get tested thru Entero. Will not matter with them if he is gluten free. I know how he feels, at end of his rope?? Hugs to all, get better!! evie

[lakeslady]

So, Evie....just eating several small meals a day helped you without going on a gluten-free diet? Or you went on the gluten-free diet also and found relief? Sorry for my confusion, and thanks for answering.

We are at the end of the rope, so-to-speak and doctors seem to be in the dark as well.

Thanks.

[evie]

So, Evie....just eating several small meals a day helped you without going on a gluten-free diet? Or you went on the gluten-free diet also and found relief? Sorry for my confusion, and thanks for answering.

We are at the end of the rope, so-to-speak and doctors seem to be in the dark as well.

Thanks.

I had been on the gluten free diet for several weeks but was not getting better when my GI set me up for this test where I stood in front of a big screen and I could see water, later food going threw and fast, this was from a computer screen. There was something in the water & food that showed up, this was called a nuclear test. the technician said going thru fast could be from celiac disease and it was. I have found relief, diagnosed Feb.06, been on strict gluten free diet. but it took me over 20 years to get this diagnosis, just not very well known here in Iowa. Or my part at least. I certainly wish you and hubby the best, it sure was a miserable time for me. Prayers your way from here.. evie

[Felidae]

It certainly won't hurt him to try the gluten-free diet. Give it a try for at least a few months and if he feels better then you have your answer. His body is trying to tell him something and I hope he figures it out.

It's not very difficult if you stick to naturally gluten-free foods like fruit, vegetables, and meat in the beginning. You'll find lots of info. and help here.

[debmidge]

Lakeslady

see below this typed paragraph for my husband's history with this disease. It couldn't hurt for your husband to go gluten free for a couple of months to see if it makes a difference. It'll take a couple of months to know and it takes a few weeks to get used to learning what's gluten free and what isn't and it's easy to make mistakes early on. It took my husband more than a month of Gluten Free to get results from the new diet.

D.

[lakeslady]

I have found relief, diagnosed Feb.06, been on strict gluten free diet. but it took me over 20 years to get this diagnosis, just not very well known here in Iowa. Or my part at least. I certainly wish you and hubby the best, it sure was a miserable time for me. Prayers your way from here.. evie

Evie~ We're from Iowa too! Don't usually meet to many Iowans on any boards. We're in NW Iowa. How 'bout you, if you don't mind saying?

[lakeslady]

Lakeslady

see below this typed paragraph for my husband's history with this disease. It couldn't hurt for your husband to go gluten free for a couple of months to see if it makes a difference. It'll take a couple of months to know and it takes a few weeks to get used to learning what's gluten free and what isn't and it's easy to make mistakes early on. It took my husband more than a month of Gluten Free to get results from the new diet.

D.

What were your husbands symptoms? Or if it would be easier for you to refer me to a past post, perhaps? I know what it was like for me to try to remember all of my husband's health history just to type up this post.

Also, what are some basic things I can do to go toward gluten-free with our meals? Everything I've read really seems overwhelming. I don't even know what to look for when reading labels. I'm totally ignorant. But if you could give me some basic ideas and perhaps even somewhere to look online that would explain how to get started.....I would be forever grateful......

[daffadilly]

I am not too familiar with this board but there might be a newbie place where it gives you all the information for the diet. But to start off you want to just start with all fresh foods - we call it eating "whole foods".

All vegetables, all fruits, all nuts, all seafood, most all cheese, but not the cheese speads and stuff like pimento cheese that has barey in it etc, all meat that does not have flavoring added, most spices are okay except lawreys seasoned salt, Rice & corn is okay, as is other grains but best to wait on those till later.

So for dinner you could cook a roast in the oven - just do not brown it in flour, and you could add some onions, carrots, garlic & potatoes. No gravy mixes etc. try some fresh herbs instead, You could have a green salad, most kraft salad dressing are gluten free (gluten-free) read the label, I like to blend up Kraft Miracle Whip salad dressing with Heinz ketchup & add herbs & spices

For breakfast you can have scrambled eggs, bacon (most is okay, read the label) cheese...

I like to have white corn tortillas, heat in a skillet with a little butter & you can put jam, butter, peanut butter on them & roll up - very good.

A lot of us think outside the box for breakfast

For breakfast you can eat some of the pot roast from the night before

You can have homemade soup with veggies, rice, meat - do not use bouillion cubes till you learn which one are gluten-free

Stir frys with veggies and meat - serve over rice

Classico spaghetti sauce - add meat, onions, bell peppers, garlic? - serve over rice sprinkle with cheese

If you like corn bread just get a bag of corn flour & in your cornbread recipe replace the wheat flour with the corn flour, no other substitutions necessary - it will be delicious. Buttermilk is gluten-free

Homemade tacos with all kinds of toppings,

baked potatoes - none of those artificial topping things

Big pot of beans or peas - serve over rice

baked chicken, baked potato, homemade chicken salad, homemade tuna salad, baked sweet potatoes, deviled eggs (heinze pickle relish gluten-free)

I am cooking tomorrow for the weekend & I freeze some meals - I will be making spring rolls, classico with shrimp, shrimp stir fry with snow peas, freezer meals with: mashed baked sweet potato, rice, & green beans or lima beans

think cooking in the 50's with no flour and no canned soups

Also see if you can find a thread on how to clean out your kitchen - the gluten gets in the porous stuff like teflon pans & will be enough to make your hubby sick.