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Need Help! My Bro Has Problems


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#31 donteatSAD

 
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Posted 21 October 2011 - 11:17 AM

Update: The Medical system has failed us again. Giving them the benefit of the doubt, they are atleast incompetent. He was doing better until last night he got some stomach cramps, but not as bad as it was before. I don't know if it's not as bad because he just ate less or it's because his stomach is doing better. His doctor is double speaking to the point it's so ridiculous. He is blaming me and my family for bringing him plain chicken and fruit smoothie and saying he needs to only eat the hospital food, but they are feeding him chicked with gravy all over it(obv he's not eating it). He is an absolute idiot. Now he's downplaying his case and saying his stomach cramps are mental, after the other day saying his case was really bad.

They haven't helped one bit except for pain relief. They have caused deep vein blood clots, tried to fear monger us into getting him onto a 7 month blood thinning program saying that there is no chance that the blood clots will go away soon and that he's 50/50 to die(No im not kidding) He refused treatment to see how it develops and it was gone the next day. Then the doctor said 'I wanted to see if it would go away soon, and im glad it did'. incredible double speak after saying no way it can dissolve so soon. The whole time they have been trying to feed him stuff that they say he can't eat, it's truly ridiculous. Plus he has had nurses that were incredibly rude and disrespectful saying he's in the hospital for constipation which isn't true and now the doctor is being a piece of crap.

Were pulling him out of their care to heal his stomach ourselves. Were getting him on some pro biotics(Dr. Mercola's probiotics) and having him eat small amounts of food, strictly fruits, vegetables, and plain meats. We juiced him some vegetable and fruit juice but im worried that may have upset his stomach a little, because drinking some myself even upset my stomach a bit. The night after he drank some of the juice he got cramps, also he said that the juice came out as diarreah really quickly after eating it, so he's not sure he even is absorbing any of it.
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#32 kareng

 
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Posted 21 October 2011 - 12:01 PM

How maddening!

Sometimes raw fruits and veggies are hard to digest.

Maybe try Cream of Buckwheat, applesauce,plain chicken broth, baked sweet potato or butternut squash. Those are supposed to be easy to digest. No cinnamon in the applesauce or butter on the potato. Just plain, maybe salt. Just for a few days. There is also cream of rice cereal. Apple juice or gatorade.

After a few days, add in plain boiled or baked chicken, rice cooked in chicken broth, potato, cooked carrots. Kind of boring, but he sounds like he feels horrible so that probably isn't too important yet.

Good luck.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#33 rosetapper23

 
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Posted 21 October 2011 - 06:35 PM

You might try giving your brother L-glutamine, which a number of celiacs take (in a smoothie) to help their guts heal. Also, I went to see an integrated medicine doctor (practices both allopathic and homeopathic medicine) because I had cancer, and he told me he could make me feel as though I didn't even have celiac. I didn't believe him, but after taking what he recommended, I felt "normal" for the first time in many years. I took Metagenics UltraClear Sustain Medical Food (which contains L-glutamine) and Probiotic Pearls. These two products made all the difference in the world.

As for what to feed your brother, please do NOT attempt to feed him vegetables and fruits that have been "juiced." That makes even people without celiac ill. It's like dumping a cup of sugar water down his throat....so please switch to giving him just water or tea. Foods like rice, potatoes, bananas, fresh vegetables, and meat should help him to feel better. Also, because he's had so much diarrhea, you might consider giving him Pedialyte along with regular water. I'm so glad that you're there for him--I can't imagine what would have happened if you were not there to advocate for him. Hospitals are filled with idiot medical practitioners--and sometimes I feel as though they're better at killing patients than healing them.
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#34 donteatSAD

 
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Posted 22 October 2011 - 12:47 AM

Update:

Now he is at home suffering. He is claiming that his pain now is like day 1 when this all started. When he was in the hospital they had him on a ton of dilaudid. The nurse even said that he was on the maximum that is allowed at the hospital. He is going through extreme pain and earlier was having chills. I am wondering if maybe dilaudid withdrawals could be upsetting his stomach, causing his stomach to feel as if he ate some gluten.
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#35 melikamaui

 
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Posted 22 October 2011 - 11:05 AM

I'm sorry for what you and your family are going through. It sounds like a nightmare and I hope your brother gets some relief ASAP. You sound like you really have a handle on taking care of your brother and keeping him as gluten-free as possible. I just wanted to add that you may want to make the entire household gluten-free right away. There are numerous threads here about how to go about it. That way you can be sure that he isn't getting cross contaminated.
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#36 mushroom

 
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Posted 22 October 2011 - 12:21 PM

He certainly could be going through withdrawal from dilaudid. Did they send him home with any pain medications? Have you tried giving him Pepto Bismol?

I agree with Kareng that you should give him only cooked, easy to digest foood, any juice should be watered down, nothing raw or with skin which is hard to digest.
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#37 domesticactivist

 
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Posted 22 October 2011 - 07:27 PM

It sounds like you are on the right track. I want to mention that homemade soups and probiotic foods can be very helpful and healing. Stock is full of nutrients and is easy to absorb. Our family is using the GAPS diet, which progresses in stages as your gut heals. I've got lots of blog entries about it on the blog linked from my profile. The newest entry has an explanation of how to do GAPS stage 1 as well as links to previous posts with more resources.
I hope he feels better soon!
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#38 donteatSAD

 
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Posted 23 October 2011 - 10:54 AM

I'm sorry for what you and your family are going through. It sounds like a nightmare and I hope your brother gets some relief ASAP. You sound like you really have a handle on taking care of your brother and keeping him as gluten-free as possible. I just wanted to add that you may want to make the entire household gluten-free right away. There are numerous threads here about how to go about it. That way you can be sure that he isn't getting cross contaminated.



Yeah Were basically all gluten free now. We definitely don't bring any gluten into the house anymore, I haven't ate gluten in over a week, and also my dad cut it out completely 4 days ago.

He certainly could be going through withdrawal from dilaudid. Did they send him home with any pain medications? Have you tried giving him Pepto Bismol?

I agree with Kareng that you should give him only cooked, easy to digest foood, any juice should be watered down, nothing raw or with skin which is hard to digest.



They didn't send him home with any pain medication. He was having such bad chills from the dilaudid withdrawals that he was convulsing and freezing cold in a 80 degree house under blankets. He probably should have been weened off because he was on weeks of very high dilaudid doses.

Were baking him some skinned apples to give to him. Also He wanted to try a high quality whey protein that is gluten free because he wants some protein. What do you guys think of this idea? Is it ok since it's basically lactose free.

It sounds like you are on the right track. I want to mention that homemade soups and probiotic foods can be very helpful and healing. Stock is full of nutrients and is easy to absorb. Our family is using the GAPS diet, which progresses in stages as your gut heals. I've got lots of blog entries about it on the blog linked from my profile. The newest entry has an explanation of how to do GAPS stage 1 as well as links to previous posts with more resources.
I hope he feels better soon!



good idea. Il check out the GAPS diet. Also he recently started taking (Dr. Mercola's)probiotics.
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#39 rosetapper23

 
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Posted 23 October 2011 - 07:45 PM

Whey protein sounds like a good idea--just make sure it isn't soy based. A lot of celiacs can't tolerate soy. In addition to protein, he also needs healthy fats. Will he eat an avocado?

I'm sorry to hear that he's having problems withdrawing from Dilaudid. That stuff is terrible! I wouldn't be surprised to learn that it's at the root of his continuing pain and discomfort. I really keep hoping every day to read that your brother is feeling better.
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#40 donteatSAD

 
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Posted 24 October 2011 - 11:11 AM

Update:

Basically what's going on is if he's not on the pain medication(dilaudid specifically, morphine or any othersdon't work) he can't eat without getting sick. If he's on the pain medication he can eat. But the pain medication is causing problems like constipation. Really crappy situation. Im now wondering if he might have stomach ulcers causing a lot of problems.
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#41 donteatSAD

 
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Posted 27 October 2011 - 08:25 PM

Update and Questions:

By brother is still in the hospital and luckily he has felt better the last few days. But throughout the last 30 days he's been up and down several times so it's not too comforting. We switched hospitals and doctors in the last 5 days. The previous gastro doctor was so sure it was celiac right when he looked down his throat with the camera then he said that the biopsy confirmed it. Now at the new hospital the gastro doctors seem to be questioning the diagnosis from the previous doctor. The aren't saying it's not celiac but they are saying it could be something else, and they have seen some of the results from the previous doctor. They did another scoping procedure with the camera and took many more biopsys to test for several different things. These aren't back from the lab yet.

Now my question is...How likely is it to be celiac when he hasn't ate gluten in about 3 weeks and isn't recovered yet? Also note that he has blisters scattered all around his intestines, not only in his esophagus.


I would appreciate any opinions on this. Thanks.
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#42 kareng

 
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Posted 28 October 2011 - 05:45 AM

I don't know how likely. I haven't seen all his tests or anything but....it seems likely he has something else. He may also have Celiac. Encourage him and the docs to look for more than just Celiac. I don't think Celiac usually causes blisters in the esophagus. Good luck.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#43 rosetapper23

 
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Posted 28 October 2011 - 05:37 PM

Have they tested him for H. Pylori yet?
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#44 heidi g.

 
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Posted 28 October 2011 - 07:09 PM

chocolate can upset ur stomach, milk can definitly upset your stomach. just because one has damaged vili doesnt necessarily mean u have celiacs disease. has he taken an antibiotic lately? could be the bacteria in the gut. does he have burning sensation sometimes after he eats. indigestion can make you throw up and feel horrible. his stomach could be inflamed. what works for me is hot 100% ginger tea or even hot water warmed in a microwave. settles the stomach. stay away from sugared juices and carbonation drinks. dont give him soup because i found out the hard way alot of soups contain wheat and salt. salt irritates the stomach. absolutely no chocolate milk. very bad idea. this whole gluten thing confuses the heck out of me but ive found a few natural remedies that have worked for me because there have been alot of times where ive felt so sick for 4 days straight and i felt like puking my guts out but i chugged pepto bismol because i try to avoid puking. try the hot water with very bland rice. no salt no dairy CHICKEN is a heavy meat and if your stomach is swollen u shouldnt eat it for it causes indigestion (and it definitly has for me) to me it sounds like it could be crohn's disease too. and what i just said would definitly work for any stomach ailment. rice and steamed vegetables and water only to drink. i dont even know if i have a gluten allergy either the doctors just told me my biopsy showed that i have damaged vili which is usually caused by gluten intolerance but i got it right after i took an antibiotic and had a nasty reaction to it and antiobiotics cause damage to the gut. hopefully he feels better
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#45 heidi g.

 
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Posted 28 October 2011 - 07:45 PM

actually blisters can be in the small intestine with celiacs disease. its uncommon but possible
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