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elaine1956

I've Lost 53 Pounds- Not Trying

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IVe been sick for 7 months... terribly. my gp can't figure it out and they took my gall bladder out trying to stop nausea and diarrhea. Finally was sent to a gastro last tuesday. He thinks it is sprue and did blood work and a stool smear. I've been on prilosec with no relief. tons of pepto with no let up in the diarrhea. finally got desperate and started taking my husbands reglan. it doesn't stop the nausea much but for some reason it kind of stopped the diarrhea. Is reglan used for diarrhea? I'm waiting for results of tests. How long does it usually take to get them back? thank you, elaine

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Along with celiac, I would also look into collagenous colitis.

Keep us posted when you get the results!

Good luck!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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IVe been sick for 7 months... terribly. my gp can't figure it out and they took my gall bladder out trying to stop nausea and diarrhea. Finally was sent to a gastro last tuesday. He thinks it is sprue and did blood work and a stool smear. I've been on prilosec with no relief. tons of pepto with no let up in the diarrhea. finally got desperate and started taking my husbands reglan. it doesn't stop the nausea much but for some reason it kind of stopped the diarrhea. Is reglan used for diarrhea? I'm waiting for results of tests. How long does it usually take to get them back? thank you, elaine

I take it you have not started on the gluten-free diet. If you are not going to get a biopsy done I would suggest trying the diet right away. I mean like today. I stopped my chronic diarrhea the second day on the diet. If you have Celiac (and it sounds like you do) then the quickest way to tell is see what response you get with the diet. It is my understanding that diarrhea is the body's way of eliminating that which is does not like. What is reglan?

Tom

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I take it you have not started on the gluten-free diet. If you are not going to get a biopsy done I would suggest trying the diet right away. I mean like today. I stopped my chronic diarrhea the second day on the diet. If you have Celiac (and it sounds like you do) then the quickest way to tell is see what response you get with the diet. It is my understanding that diarrhea is the body's way of eliminating that which is does not like. What is reglan?

Tom

the diarreah kind of cleared up on reglan which empties out your stomach a little faster. makes no sense. i went gluten free for several days with a very good improvement. my htyroid replacement hormone went nuts in august. i have an incisional hernia from the gall bladder surgery, done in july. my guts gurgle so loudly a couple of hours after i eat that you can hear it across the room. i have brothers with stomach problems that they haven't diagnosed. there is tons of thyroid problems in the family. hiros$#&o's or something. i had a cousin just die of lymphoma/ luekemia. i have had a chronic sinus infection for three of the 7 months. i have stage 1 kidney failure. i lost an inch and a half in my height and i've lost so much weight i've been peeing orange, which is a bad sign. i've been too sick to leave the house for seven months except to drag myself out for dr appoint. if i don't eat for two or three days i feel fine... tired but fine. then i get hungry, eat and it all starts again. tuesday was the first i heard of celiac and i didn't even know what it was. i will appreciate any responses and help. thanks elaine

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the diarreah kind of cleared up on reglan which empties out your stomach a little faster. makes no sense. i went gluten free for several days with a very good improvement. my htyroid replacement hormone went nuts in august. i have an incisional hernia from the gall bladder surgery, done in july. my guts gurgle so loudly a couple of hours after i eat that you can hear it across the room. i have brothers with stomach problems that they haven't diagnosed. there is tons of thyroid problems in the family. hiros$#&o's or something. i had a cousin just die of lymphoma/ luekemia. i have had a chronic sinus infection for three of the 7 months. i have stage 1 kidney failure. i lost an inch and a half in my height and i've lost so much weight i've been peeing orange, which is a bad sign. i've been too sick to leave the house for seven months except to drag myself out for dr appoint. if i don't eat for two or three days i feel fine... tired but fine. then i get hungry, eat and it all starts again. tuesday was the first i heard of celiac and i didn't even know what it was. i will appreciate any responses and help. thanks elaine

Elaine,

I hear exactly what you are saying. I had a rumbling gut, contstant reflux/indigestion, bloating , chronic diarrhea etc,etc,etc. Was 30+ lbs underweight. All I reapeat all cleared up on the diet. The fact you said you went gluten free for a few days with improvement is "really important". In order to prove it you have to get back on it and stay on it to find out once and for all that this is your problem. Good luck.

Tom

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Elaine,

I hear exactly what you are saying. I had a rumbling gut, contstant reflux/indigestion, bloating , chronic diarrhea etc,etc,etc. Was 30+ lbs underweight. All I reapeat all cleared up on the diet. The fact you said you went gluten free for a few days with improvement is "really important". In order to prove it you have to get back on it and stay on it to find out once and for all that this is your problem. Good luck.

Tom

Tom, thanks, I just got the call and the tests came back negative. Now they want to do a colonoscopy. I'm going to eat so much bread that I make myself sicker than a dog. I've had a ct scan on my lower abdomen and it showed nothing so I don't know why it is so important to do a colonoscopy. I've only had a week of solid stools in a year and that was in september after bladder cancer and pain meds. I am about to give up hope. The doctors think I'm nuts but how can water diarrhea for a year be in your head? the nausea is horrible. I don't know what else to do and I'm sitting here bawling like a baby. BTW I have a history of bipolar so I guess they have grounds to think I'm nuts. thank you so much for caring.. elaine

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Tom, thanks, I just got the call and the tests came back negative. Now they want to do a colonoscopy. I'm going to eat so much bread that I make myself sicker than a dog. I've had a ct scan on my lower abdomen and it showed nothing so I don't know why it is so important to do a colonoscopy. I've only had a week of solid stools in a year and that was in september after bladder cancer and pain meds. I am about to give up hope. The doctors think I'm nuts but how can water diarrhea for a year be in your head? the nausea is horrible. I don't know what else to do and I'm sitting here bawling like a baby. BTW I have a history of bipolar so I guess they have grounds to think I'm nuts. thank you so much for caring.. elaine

Elaine,

I meant get back on the diet not "gluten". I think you started proving it when you said you had positive response before. Try going gluten free for an extended period of time. Don't make yourself any more sick than necessary. Then if it works you will have a pretty good idea this is what is wrong. Sorry about the misunderstanding.

Tom

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Why don't you just try going gluten-free for a while and see if you feel better? My kids all tested negative, but two of them are gluten intolerant and have had great results by going gluten-free. I am also undiagnosed, but fanatically gluten-free. It's okay to take your health care into your own hands for something like this. If you don't get better by going gluten-free, you can continue to explore what else might be wrong.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Elaine,

My good friend TwoL (nickname) had almost exactly your symptoms - she had her gall bladder out, lost tons of weight, kidney failure, liver failure, etc, etc, etc. They tested for EVERYTHING they could think of. . .including parasites, infections, gut biopsies, colonoscopies, etc until some intern suggested they run the blood work for celiac disease. Guess what she had. TwoL is now gluten free and has been out of hospital for five years - she still has no gall bladder, her liver is still shot, and her kidneys are iffy, but she is alive and otherwise healthy. Rant, rave, scream, screech, howl, threaten and pound your feet to get your doctor to do the BLOOD WORK for celiac disease. IF you have neurological celiac disease (like I do), you may have a perfectly healthy gut (from the perspective of your lab tech/doctors). . .my stool samples regularly come back negative for celiac disease, but my Ig counts are 2500:1 (the normal range is 1:250). If you have to, threaten your doctors with malpractice unless they do the tests. . .(you might also mention that schizophrenia and depression are common among patients with neurological celiac disease. . .when I am eating gluten, I experience wild emotional swings (anger to despair to compulsive giggling, obsessive behaviour and panic). . .including almost instant, improbable depression a few hours after eating)

Good luck

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ok, thank you all. I'm a little calmer now. I slept a couple of hours. I'll explain myself maybe a little more clearly. had just water diarrhea for 4 months before may. I got sick in May. Started with bad bronchitis. Went on zpak and had a bad reaction. nausea, vomiting, face and tongue swelled. switched to doxycycline 7 days, cipro 7 days. nausea continued. they exrayed for congestive heart failure... clear. june, i didcontinued Zyprexa, lithium, wellbutrin due to nausea. dicontinued drinking a gal of skim milk a day. did ct scan for lung disease, i smoke. clear. but they found my gall bladder was distended. surgery for that. gall bladder was full of stones, stuck to my liver, had to leave a small piece in and cauterize it, walls were calcified, stone in bile duct. 2 weeks after surgery not much improvement. 4 weeks after surgery sicker yet. could not tollerate sugar or fat at all. developed hernia at large incision uneder rib cage. compazine, prilosec, tons of pepto, gas x,... no improvement. endoscopy- august, found mosaic mucosa, eurythmotous mucosa, hiatus hernia.. small. no gastritis or h pylori. no improvement. worsening. continued meds. ultrasound of ovaries. found unresolved complex, septated, large bilateral cysts. they are still there. found bladder cancer. surgery for noninvasive, low grade, 5cm tumor. two weeks improvement of stomach symptoms on pain meds unless i ate normal meals. could not tolerate cookies, cakes, fatty meals. lived off boiled shrimp and beans. starteed eating mormally. we eat a lot of meals at resturaunts. got constipated from pain meds. took correctal got very sick. took metamucil, got very sick. nausea, gas, diarrhea, pain in stomach returned, bad. did tests for parasites, clear. thyroid replacement hormone was off bad. lowered dose. when i would get severly nauseaous, gas in stomach, hubby would put hand on stomach and pressure and it would gurgle loudly for 10 min and start feeling better. guts gurgle. lots of nausea and gas. continued prilosec, etc. no improvement. little appetite, two bites of food and i was full. sharp internitten pain from two inches above navel off to right side, shooting up to rib cage. off and on. still continues off and on. xrays looking for obstruction... clear. ct scan of lower abdomen... clear. put myself on reglan to empty stomach faster. diarrhea cleared up to peanut butter thickness, but do not float. medium brown. nausea etc continued. pain in stomach. neurontin during the day helps some. motrin helps some. .... i wake every night feeling like i have stomach flu. drink lots of diet go back to bed. get up at 4 am feeling like i have stomach flu. i take neurontin. drink diet. better by 9 am. eat egg and toast. start getting nauseaus 2 hours later. diarrhea every time i pee. eat lunch. if i eat anything other than boiled shrimp, baked chicken, fresh meat and fresh veggies i get very ill by 5 or 6 pm and cannot eat dinner. deathly ill by 8pm. if i eat nothing at all for two days i feel great. very great!! start eating normally and it all comes back. dr did blood antibody tests and stool smear for celiac, but i hadn't eaten much of anything the week before the tests. i went gluten free for 4 days or so. could eat. nausea was completely gone. felt great, but tired. gyno said i lost 1 and 1/2 inches on height, 53# of weight since may. stage one kidney failure. liver and pancreas seem to be fine. still have pain on right side. tests for celiac came back negative today. negative! i ate two pieces of bread. nausea came back but not as bad. cleared up in about 4 hours. stomach and guts started gurgling loudly 3 hours after eating the bread. that had cleared up on the gluten free diet! i will see if diarrhea returns. it's 6pm and i am getting nauseous all i've eaten is and egg, (neverbothers me) and those two pieces of toast and butter at 9 am. pain in right side. pain at hernia below rib cage. my mental state has been excellent through since may!!! no mood swings no paranoia. no depression other than down in the dumps about being sick and not being well enough to leave the house for 7 months. but i am getting desperate. i don't know where to go. gluten free helped immensely. but if i don't have positive tests, i will always wonder and two doctors already think this is all in my head. the gasto guy i just started with thinks there is something wrong. i have a brother living off opium base meds for stomach problems.. never diagnosed. another one with stomach problems not responding to prilosec. myself and a sister and a nephew with thyroid disease. niece died of kidney failure. sister was just tested for lupus- negative. a cousin just died of lymphoma. my daughter has a genetic defect in kidney. please give me advice or tell me where to go to get help. thanks elaine.

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You need to go 100 % gltuen free now. Check your shampoo, lipstick chapsticks and creams. You need to go to kinnkinnick.com now and order some bread for some toast and crackers. You need to take it easy on the fiber for now. You need to stop believing the doctor needs to give you permisison to go on a gluten free diet. I don't know in which country you reside, but permission to begin a gluten free diet comes from you not a doctor. Do it now.

Eat nothing unless you KNOW it's gltuen free.


The American Diet of Chips, soda, ice cream, Goldfish Crackers, bread for breakfast (cereal, donuts, waffles, toast, bagels) cereal bars, "gummies", candy, msg, dairy products of all kinds, soy, and other chemicals - is Killing us and promoting diseases. BE HEALTHY. EAT NATURAL FOODS. DO NOT INGEST CHEMICALS! If you cannot pronounce it, do not eat it. Use Coconut oil. Eat herbs in salads. NO DAIRY. LOVE YOURSELF. LOVE YOUR FAMILY. FOOD IS MEDICINE!

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If you felt better gluten-free, go gluten-free again. You do not need to be eating gluten for a colonoscopy as it's not a test for celiac. Many people are non-celiac gluten intolerant and the blood test wouldn't necessarily pick that up. My own blood test was negative, but if I eat gluten, it makes me sick.

You said you drink lots of diet, is this diet soda? The sweeteners in diet soda are bad, plus soda in general is bad for you, switch to water. You might put a little sprinkle of sea salt in your water so it has electrolytes as with all this diarrhea you electrolytes are probably low. Be sure it's good quality sea salt that still has the other minerals in it (Real Salt is good), not something that is just as processed as table salt. Be sure you're drinking at least two quarts of water a day (you can put 1/4 tsp. salt per quart of water).

Switch to a simple diet of meat and veggies for a while. Cook the veggies till they're soft so they're easy to digest, maybe make soups. Maybe some rice, too. Bananas might be soothing as well. Don't eat a lot of processed foods. You body needs good stuff so you can heal.

Keep reading here, you will learn a lot. Keep us posted on your progress.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi Elaine,

welcome to this forum. I am also new here and the people are great. You don't need to be medically diagnosed to have celiac (I think I read that there is a 30% false negative rate). This means that even if you have celiac, it won't necessarily be detected on the tests (and maybe better from an insurance view point). All you need is a positive response to the diet - that is itself diagnostic. If they do tests soon, everything will still be detected, even if you already start gluten free.

If you felt better on gluten free that is most likely your answer. Go with it. Anything would be better than feeling how you currently do. And it is not worth continuing one more day feeling so bad just so you can have medical validation of your condition. If this helps you, maybe you can bring it up for your other family members.

People here can also share their experience with you as you go along. :)

I have been doing gluten free diet for only 6 days now. On day 1 I started feeling better. No nausea, no D, stomach is MUCH less painful. It is wonderful that something as simple as a diet (and it is not too hard to follow if you stick to less processed foods), can turn your life around. I am unbelievably happy. Without being in constant pain I can now focus on other aspects of my life that need to be addressed. I am hoping for a positive diagnosis (they did biopsy the other day), but even without it I will continue gluten free.

Very best wishes. Please start today.... and let us know how you go. Take care.

Sally


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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Thank you all so much. I have a question. Could celiac cause a thick mucous to form in the back of your throat? I assume it is coming from my sinuses. I have to spit it into a kleenex. it went away the 4 days I was on the gluten free diet.

Also when I got frustrated today and ate the two pieces of toast, several hours later my tongue burned like I had pepper on it. Very much. Has anyone had that type of reaction to gluten?

I think I have a doctor who doesn't know a lot about this. thank you, elaine

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