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silveylane

Healing Your Gi Tract In The Beginning - How?

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My 15 y/o has had severe reflux, vomiting, spasms, and diarrhea over many years, but this last episode has lasted 4 weeks straight, 24/7 until I put him on a gluten-free diet. I know he needs plenty of fruits & veggies. These things seem to aggravate the situation though. Is it because of the "seeds" or covering, or are these just too much fiber at first?

Strawberries

Watermellon

Blackberries --- vicious vomiting and "seen" hours later

Squash

Green peas

Green bell pepper

Eggs - scrambled

Spinach or any kind of lettuce

Pickles

Second question, can you do trail mix/crunchy or chewy bars at first with nuts in them (of course all gluten-free)?

This forum is saving my sanity! Thank you.

I know to not give gassey veggies at first (brocolli, brussel sprouts).

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i'd keep away from the berries, there may be too much acid for his stomach

if you google foods that are the least like to cause allergies it should bring up lists, pretty much when you start feeding a baby. everytime my daughter gets sick we do it and it seems to help, make sure even the fruits are soft, you can poach them, also steamed chicken with little ginger. try making your own stock and let him drink it. my MIL is chinese and swears by boiling rice and saving the water to drink, then cooking the rice again with stock till it turns to mush (congee)

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Thanks for the advice on berries. Think I will have to forgo drinking rice water though -- I love cold water ;)

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In the situation your son is in, feed him what WORKS.

Potatoes, rice, bananas, chicken, lamb, pears...whatever works. He'll let you know when he's ready for something different.

Soups are great. Make chicken soup - boil a whole chicken and make a stock, then add back tomatoes, onion, carrots...whatever makes it tasty. Add rice noodles if he wants them. Soups go down easily, and hopefully stay down.

Try giving him a probiotic and eventually digestive enzymes. Make sure they are gluten-free (make sure all meds are gluten-free). They will help with digestion.

Your son sounds like he is willing to eat, in spite of the likelihood it will come back up. That's good - humor him! Give him whatever he wants ( as long as its gluten-free, apparently).

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have been reading up on Zinc Carnosine for help with healing the gut, I've just started using it heres some info on it

Study points to zinc carnosine's role in gut health

By Clarisse Douaud, 26-Feb-2007

Related topics: Research, Minerals, Gut health

Zinc carnosine could protect the gastrointestinal system according to a study conducted in the United Kingdom.

Researchers sought to examine the potential for this ingredient, which is marketed for gastric health, for gut repair. The study, published in the current issue of Gut journal, was performed at Barts in London and the Queen Mary's School of Medicine and Dentistry.

The study found zinc carnosine has biological activity in the gut.

"Importantly, these effects were seen at concentrations likely to be found in participants taking the product as a health food supplement," says the study.

The research included in vitro studies using pro-migratory and proliferation assays of human colonic, rat intestinal epithelial and canine kidney epithelial cells.

The clinical trial involved ten healthy volunteers who participated in randomized crossover trials comparing changes in gut permeability prior to, and following, five days of indomethacin treatment with zinc carnosine or placebo coadministration.

Participants were given 50mg of indomethacin three times daily and 37.5mg of zinc carnosine twice daily.

"Our find that (in the placebo arm) five days of treatment with indomethacin caused a threefold rise in gut permeability is in keeping with previous results of ours and of other groups," wrote the researchers. "By contrast, when participants also received ZnC, this prevented the rise in permeability caused by indomethacin, strongly suggesting a small-intestinal protective effect."

The zinc carnosine was found to stabilize gut mucosa. According to the study, the compound stimulated an approximately threefold migration and proliferation of cells in a dose-dependent manner. Oral supplementation was also found to decrease gastric and small intestinal injury.

Reference:

Gut 2007;56:168-175.

Title: "Zinc carnosine, a health food supplement that stabilizes small bowel integrity and stimulates gut repair processes."

Authors: Mahmood, A et al.

This content is copyright protected

However, if you would like to share the information in this article, you may use the headline, summary and link below:

Study points to zinc carnosine's role in gut health

Zinc carnosine could protect the gastrointestinal system according to a study conducted in the United Kingdom.

http://www.nutraingredients.com/Research/Study-points-to-zinc-carnosine-s-role-in-gut-health

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Thanks Prickly! I think guys are different with Celiac than gals? The boy knows a lot of things now will come right back up, but says he just wants the pleasure of tasting the whatever it is. So he's done that a few times, and while I'm around to help him with the after effects, I figure it's better for him to learn it now. Though sometimes he loses his humor and sadly says it's all pointless and "it" will never stop. sigh. Right now I just pretend to be superwoman and assure him that life is going to be good again (if it ever was).

He is a funny, comedic kid with a boisterous cheerful attitude despite the situation and HUGE anxiety....the jokes cover it well. All he survived on the last 4 weeks were bananas and rice....so that is NOT even an option for him now that he feels like he can keep other things down. He is a typical teenager: Pizza, hamburgers, italian food, heavy cream based soups, BBQ -- That has changed drastically.

I get text messages from his bedroom to the kitchen asking if we can get room service to call in a Pizza :D Once the reflux/acid stops, I am going to make him a gluten-free pizza.

New question as I see you on here all the time and everywhere. I read mention that because of villous intestinal destruction, that some medicataions might not be absorbed. Bingo!? It takes TWO rounds of antibiotics to get rid of Strept; 30 days of antibiotics to get rid of sinusitis; and sleep medication -- a joke. You could knock a horse out quicker than this kid. He has not slept all night long in years. Today they put him on Ativan (in the Valium family). Rather mild dose. Two at bedtime. Done. He is still wide eyed and bushy tailed.

So is it TRUE that meds as well as nutrients are not absorbed?

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It's been my experience that.meds are overly effective...but that's just me. I'm allergic to sulfa drugs, cephalexin, and can't do corticosteroids. And Valium???? Omg, my head would probably pop off and sprout a tree.

As far as food, a bready pizza crust (little sauce or cheese) may be just the ticket. See if you can find a gluten-free pizza crust mix around you, or even an Udi's premade crust. It may be just the thing to perk him up. Get gluten-free rice crackers - I like Blue Diamond personally.

Chebe makes a nice focaccia bread mix. He may like that. They have other mixes - I think a pizza crust....

Udi's makes decent hamburger buns. And honestly when I'm sick I love hamburgers. Maybe he can handle one.

Processed stuff may be too much right now, but if he's adamant try it. Boys - I have one. They make girls look rational :).

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I'm concerned about the reflux issue. Yes, it's common with celiac, but there may be other things in play here. I would STRONGLY recommend that you (and your son) read, "Primal Body, Primal Mind," which goes to the heart of how our bodies process foods. It is the most important body of work that I have ever read (and believe me, I've read a LOT about nutrition). The author is very much against ingesting gluten and backs up her opinion with science....and she explains exactly why reflux occurs. Please, take a moment to read this important work...it'll change your lives and put you back on the path to good health.

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New question as I see you on here all the time and everywhere. I read mention that because of villous intestinal destruction, that some medicataions might not be absorbed. Bingo!? It takes TWO rounds of antibiotics to get rid of Strept; 30 days of antibiotics to get rid of sinusitis; and sleep medication -- a joke. You could knock a horse out quicker than this kid. He has not slept all night long in years. Today they put him on Ativan (in the Valium family). Rather mild dose. Two at bedtime. Done. He is still wide eyed and bushy tailed.

So is it TRUE that meds as well as nutrients are not absorbed?

Yes, of course. Nothing is being absorbed properly!

Some people need MORE of a drug and some (like me) have an exaggerated effect from them. I cannot take even a tiny dose of something without terrible side effects. So, I take nothing.

You may wish to stop the ativan. Unless he suffers from anxiety? in which case he may need to continue taking it. If he is not absorbing it properly, however, he will continue to need higher doses. (This is what doctors do to try and "help" with gluten-induced insomnia. Give drugs. ) He may have a harder time coming off that med if he takes it too long and withdrawal is worse. Be sure to taper him off slowly. I learned that one the hard way. UGH! :rolleyes: You say he is not benefiting from it and they do sometimes aggravate insomnia instead of resolving it. Maybe he needs another type of sleep aid? Believe me--been there/done that many times before DX. (this is just my humble opinion )

His insomnia will resolve in time, I am guessing--as the inflammation from the celiac dies down and his gut lining heals. The insomnia comes from his system being overstimulated from the disease process. His autoimmune system has been on hyper-overdrive.

It's funny--My doc and I had this discussion just yesterday!

You mention antibiotics and I cannot stress enough that your son should be on PROBIOTICS. There is plenty of scientific evidence to support the use of probitoics, but in a damaged Celiac gut, they are essential.

http://www.thefooddoc.com/probiotic_facts

I had burning reflux, mouth, stomach and horrible D or C , ridiculous insomnia for YEARS....the use of digestive enzymes and probiotics put an end to all that misery. Try Culturelle with Lactobacillis GG. Works wonders.

As much as you want to spoil him with a gluten-free pizza, avoiding dairy and tomatoes and too much sugary stuff for the first few months is crucial for recovery. Why, you ask?

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc.

After going gluten-free, his villi will heal and most likely, he will be able to tolerate dairy foods again.

For now, keep his diet simple and bland, so he can heal. Pickles, peppers, citrus, sugary sodas, raw veggies, candy, tomatoes, chocolate, trail mix and seeds??? --These are really difficult to digest in a damaged gut and should be avoided!! Some fruits--however nutritious--are just too rough on his inflamed GI tract. If he hates this idea, tell him it's temporary and to be patient and it will stop the pain. You can add these things back in gradually.

Potatoes, rice, chicken, turkey--and homemade soup. Nothing acidic or rough. Slow and steady and he'll start to feel better and stop that burning.

We all learned this the hard way. :rolleyes: The good news is: your son is young and will rebound faster !!

Best wishes!

EDITED TO ADD: MY APOLOGIES--I see he DOES suffer from anxiety. You should keep him on the ativan then if it helps him! I am thinking that anxiety will abate as gluten leaves his system--as it does for most of us. I suffered from it horribly --never had it in my life until the celiac triggered--and now it only reappears with accidental glutenings

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Yes, of course. Nothing is being absorbed properly!

Some people need MORE of a drug and some (like me) have an exaggerated effect from them. I cannot take even a tiny dose of something without terrible side effects. So, I take nothing.

Stop the ativan. Unless he suffers from anxiety? This is what doctors do to try and "help". Give drugs. He will have a harder time coming off that med if he takes it too long and withdrawal is worse. He is not benefiting and they just aggravate insomnia. Believe me--been there/done that many times before DX. (this is just my humble opinion )

His insomnia will resolve in time--as the inflammation from the celiac dies down and his gut lining heals. The insomnia comes from his system being overstimulated from the disease process. His autoimmune system has been on hyper-overdrive. My doc and I had this discussion just yesterday!

You mention antibiotics and I cannot stress enough that your son should be on PROBIOTICS. There is plenty of scientific evidence to support the use of probitoics, but in a damaged Celiac gut, they are essential.

http://www.thefooddoc.com/probiotic_facts

I had burning reflux, mouth, stomach and horrible D or C , ridiculous insomnia for YEARS....the use of digestive enzymes and probiotics put an end to all that misery. Try Culturelle with Lactobacillis GG. Works wonders.

As much as you want to spoil him with a gluten-free pizza, avoiding dairy and tomatoes and too much sugary stuff for the first few months is crucial for recovery. Why, you ask?

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc.

After going gluten-free, his villi will heal and most likely, he will be able to tolerate dairy foods again.

For now, keep his diet simple and bland, so he can heal. Pickles, peppers, citrus, sugary sodas, raw veggies, candy, tomatoes, chocolate, trail mix and seeds??? --These are really difficult to digest in a damaged gut and should be avoided!! Some fruits--however nutritious--are just too rough on his inflamed GI tract. If he hates this idea, tell him it's temporary and to be patient and it will stop the pain. You can add these things back in gradually.

Potatoes, rice, chicken, turkey--and homemade soup. Nothing acidic or rough. Slow and steady and he'll start to feel better and stop that burning.

We all learned this the hard way. :rolleyes: The good news is: your son is young and will rebound faster !!

Best wishes!

An unprocessed diet would be best (and honestly, that may be all he can handle)...but he is 15 and he's been hella sick....and he has anxiety....so there may be some bending room here to keep him positive (and Mama sane).

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An unprocessed diet would be best (and honestly, that may be all he can handle)...but he is 15 and he's been hella sick....and he has anxiety....so there may be some bending room here to keep him positive (and Mama sane).

I understand that ---which is exactly why I said "unless he has anxiety"--in which case, he may need the med for sure (although Mama said it did nothing for his sleep but keep him aroused and alert.)

I also said this bland diet is TEMPORARY--like a week or two--so he can stop being so sick and in pain and misery. Feeling better will lift his spirits in no time.

I suffered the same symptoms and it was not until I took those foods out for awhile and took the probiotics that it stopped.

Just going gluten-free does not resolve that kind of pain and dairy and tomato sauce just exacerbates the reflux and keeps the diarrhea going. IMHO

I just offered these suggestions to eliminate the acidic foods for a while so this poor kiddo can stop hurting and Mama can get some rest, too.

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I understand that ---which is exactly why I said "unless he has anxiety"--in which case, he may need the med (although Mama said it did nothing for him.)

I also said this bland diet is TEMPORARY--like a week or two--so he can stop being so sick and in pain and misery. Feeling better will lift his spirits in no time.

I suffered the same symptoms and it was not until I took those foods out for awhile and took the probiotics that it stopped.

Just going gluten-free does not resolve that kind of pain and dairy and tomato sauce just exacerbates the reflux and keeps the diarrhea going. IMHO

I just offered these suggestions to eliminate the acidic foods for a while so this poor kiddo can stop hurting and Mama can get some rest, too.

I understand all that, and i'm sure Mama does too...

What I'd hate to see happen here is that the OP gets the idea that the gluten-free processed foods are an absolute no-no at first... While they aren't advisable sometimes they can help get you over a hump...and I'd think a 15 year old very sick, miserable kid would need a little encouragement - especially to frame gluten-free in a positive light (instead if making it feel like gastronomic doom).

If his body doesn't like the processed foods it sounds like it will be obvious immediately, anyway. That may or may not kill the urge to eat them, who knows...since kids aren't exactly rational.

I doubt a bit of gluten-free pizza crust with a touch of sauce will doom him - if it does probably all processed food will at this point. Same with a gluten-free hamburger - just meat and bun (or meat...). If he can't handle mild breads then he can't handle it. And maybe it will be a hint that he has other intolerances, too.

Geez, now I want pizza....

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Hi!

Does your son's doctor knows about the horrible acid reflux that he experiences after eating this food? Can he put him on some medication for a while? I'm currently on Nexium.

I know that some member will be against that, but the pills are helping me tremendously. They will also help your son to heal the stomach lining.

Can your son be allergic to nuts, or other things? You can have diarrhea, vomiting, acid reflux, etc., if you are allergic to something.

Did your son just had an upper endoscopy? Sometimes when doctors are looking into stomach they can stretch the esophagus. It's taking a longer time to get tide again. I was on Nexium and after my endoscopy, not even pills were working. All acid was shooting into my throat all the time. The worst pain I experienced was over night. But little by little all got back to "normal" with the help of pills.

My doctor gave me the list of food to avoid and a few rules to follow:

- Do not lay down within 2 hours of eating.

- Elevate the head of the bead 6".

- Do not eat too much at once.

For others.

- Stop cigarettes.

- Stop alcohol.

I will add something: Lay on the left side of the body. Your stomach will stop overflowing and irritating esophagus.

Avoid:

Fatty foods

Chocolate

Peppermint and spearmint

Onions, specially raw

Citrus juices (oranges, grapefruit)

Tomato juice, sauce

Spicy foods

Coffee (caffeinated and decaffeinated)

Cola

Tea (caffeinated)

Garlic

Does you son plays games before he goes to sleep? If yes, his brain is still working "overtime". Can he read something instead for 30 minutes before? We should do something boring before we lay down. Is his room dark enough? Melatonin- the sleep hormone will develop only if we sleep in dark room (TV should be off). Can he drink warm tea, or milk (rice, soy, coconut)- even chocolate?

I saw ones on Tv show - Doctors, or Dr. Oz, the normal cycle of sleeping pattern and also a day cycle. One doctor was explaining how our body is set.

She sad, that if we will lay down by 10:00pm, we will sound to asleep very easily and we will have a good night sleep. After 10:00PM our body will get a second "power" and we will feel fresh again. We wouldn't have a very good night sleep. Some people would just turn in their beds until 2-3:00AM. Or you wouldn't be able to go sleep till that time at all.

People also sleep in 1

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I understand all that, and i'm sure Mama does too...

What I'd hate to see happen here is that the OP gets the idea that the gluten-free processed foods are an absolute no-no at first... While they aren't advisable sometimes they can help get you over a hump...and I'd think a 15 year old very sick, miserable kid would need a little encouragement - especially to frame gluten-free in a positive light (instead if making it feel like gastronomic doom).

If his body doesn't like the processed foods it sounds like it will be obvious immediately, anyway. That may or may not kill the urge to eat them, who knows...since kids aren't exactly rational.

I doubt a bit of gluten-free pizza crust with a touch of sauce will doom him - if it does probably all processed food will at this point. Same with a gluten-free hamburger - just meat and bun (or meat...). If he can't handle mild breads then he can't handle it. And maybe it will be a hint that he has other intolerances, too.

Geez, now I want pizza....

With all due respect, what I have suggested is not going to make him feel he will suffer a "life of gastronomic doom" nor did I say he could never have any gluten-free prepared foods at all. Did I? :blink: Nor do I not think the OP would get the wrong impression at all from what I have said.

I suggested that tomato sauce is one of the worst foods for reflux. Fatty meats are tough to digest. Please, look at the list the previous poster has suggested as offending foods!

Have you ever suffered from acid reflux??--then, surely you know this.

I was trying to help with the specific problem she posted about.

The first priority is to get help him stop the horrible reflux and the diarrhea, so he CAN heal and start enjoying all the gluten-free goodies available to him!!! :)

What I have suggested --maybe try it for all of a week or two---may just help him. That's all.

Once he feels better, add more foods back in. He's young and will probably rebound much faster--at least that is what my friend's son was able to do at 16-- and now, he feels fantastic!

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With all due respect, what I have suggested is not going to make him feel he will suffer a "life of gastronomic doom" nor did I say he could never have any gluten-free prepared foods at all. Did I? :blink: Nor do I not think the OP would get the wrong impression at all from what I have said.

I suggested that tomato sauce is one of the worst foods for reflux. Fatty meats are tough to digest. Please, look at the list the previous poster has suggested as offending foods!

Have you ever suffered from acid reflux??--then, surely you know this.

I was trying to help with the specific problem she posted about.

The first priority is to get help him stop the horrible reflux and the diarrhea, so he CAN heal and start enjoying all the gluten-free goodies available to him!!! :)

What I have suggested --maybe try it for all of a week or two---may just help him. That's all.

Once he feels better, add more foods back in. He's young and will probably rebound much faster--at least that is what my friend's son was able to do at 16-- and now, he feels fantastic!

Yes, I had reflux so bad that I literally would double over, have to pull over on the side of the road...,

However, I could tolerate a bit of acid with enough "base" - Like a bit of tomato sauce with pizza crust. I also had fabulous luck eating fatty foods to "calm" it down.

I also think that everyone is different, and has different tolerances and responses. And in when kids are involved, buy-in is everything.

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Have you looked into the GAPS diet? It took me about 3 months on this before I was able to start really digesting/handling a lot of other foods.

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Yes, I had reflux so bad that I literally would double over, have to pull over on the side of the road...,

However, I could tolerate a bit of acid with enough "base" - Like a bit of tomato sauce with pizza crust. I also had fabulous luck eating fatty foods to "calm" it down.

I also think that everyone is different, and has different tolerances and responses. And in when kids are involved, buy-in is everything.

I burned from my mouth to you- know- where for over 3 years. My entire GI tract was inflamed. Up all night--Gawd, that pain is ugly.

You being able to tolerate acidic foods and fatty foods with reflux disease is unusual, I think. Very lucky, even. :)

I know this young man wants to be "normal" and eat like everyone else--heck, who doesn't? :) --but avoiding a few foods that almost certainly exacerbate his painful symptoms for a week or so is not a punishment exactly and it may just help calm things down enough for him to feel less anxious, sleep-deprived, dehydrated and suffering from diarrhea.

Having gone through this same thing myself, I feel for him. :(

The OP asked "How to heal the GI tract in the beginning?".

I offered my thoughts and what I have suggested is really not much different from the foods you listed, so I am not really sure why you are taking issue with what I have said.??? I am not at all suggesting he never have pizza again, just avoid tomato and acidic foods for a week or so. and add in some probiotics so his GI tract can heal.

You keep repeating the same thing--that I am not considering he is a kid and that this will turn him off to being gluten free--and I never said he should not have gluten-free goodies or pizza ever again. I am suggesting ways to help his tummy heal so he CAN have all those foods again. geesh.

( I'm not really into arguing on here, so I'll just back out of this one for now. )

To the OP:

Mom, I hope some of this information, especially the info Simona19 so graciously posted helps your son!

Best wishes to you!

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Hello everyone on this thread. I've skimmed through all of your very good and caring responses with my eyes dripping with tears. You guys care more about my 15 y/o and are "strangers" than do the people I know and these doctors. Ya'll explain things in great detail with useful information, tips, and encouragement. Right now, ya'll are invaluable! Thank you so kindly.

Think at this point I need to explain or correct something: "My 15 y/o" is actually my 15 y/o grandson whom we (his grandfather & I) have been raising since 2 weeks old. (Bad situation for adult daughter on Day One.) We have sole custody, and adoption as well. My husband's health has been very poor for the last 5 years (not celiac related) - cancer. So lots of stress, doom and gloom in this home. The anxiety the child has goes back to birth I think. The medical problems and chronic illnesses intensify the anxiety, and this current horrific, unresolved GI episode seems unrelenting. So it is a commplicated situation to say the least. He has the best of everything, except good health,young parents, and an extended family (when you are being raised by your grand-parents who are your pseudoparents, there is no extended family -- they are all dead or really, really old.) ie., BEST OF EVERYTHING = EDUCATION AND MATERIAL THINGS, all of which are not even helping this kid survive because no one is happy with out good health and emotional well being, no matter what opportunities can be afforded to you. (No, we are not rich. We work very hard and are self-do-ers on all maintenance, etc.)

I chunked my career to raise this kid. My husband sold his business to merge with another to free up some time and raise this child. He is our blessing and we were committed when we took him. Our gain/his parents' loss.

So what I am saying is that IT HAS ALREADY BEEN TOO DANG HARD AND WE ALL DESERVE BETTER THAN LIVING THROUGH THIS NIGHTMARE WITHOUT THESE DOCTORS DOING SOMETHING TO AT LEAST HELP HIM GET BACK TO SCHOOL. The doctors don't even seem concerned about his inability to go to school because of puking and D 24/7. No hurry. I don't know how any of ya'll worked and kept a job with these GI distresses, doctor appts and tests, much less raise your own children.

I will have to go back and re-read all of your posts tomorrow when my head is not having a pity party.

So please bare with me while I spill my guts, and then go to bed and sleep before the kid wakes up at 2:00 am with wall-to-wall vomit and D.

Today was awful and good. I took him to see the new pediatric GI specialist after him only having a few hours sleep last night -- horrible, vicious vomiting and D. We both struggled to even get to the appointment. Nice lady, methodical, and thorough. Her recommendations: Lose 60 1bs (he has already lost 20 1bs in 4 weeks, if they don't help him soon -- 60 1bs should be easy! So tired of "lose weight". Do they think you don't want to?) Treatment: She ordered a full Celiac Blood panel (we went ASAP afterwards and did it), Prescription for an antibiotic to kill bad bacterial overgrowth for 3 weeks, then follow with Probiotics (ya'll all mentioned that), and an outpatient "reflux impedment test (scheduled next week and is a nasogastric tube down to your stomach with a recorder that you wear for 24 hours). Told her I had already started him on gluten-free diet and in 3 days he had only thrown up since seeing the psychiatrist and taking the Ativan. She would NOT make any recommendations on continuing the new Ativan or not.

So, we have a lot in the works right now at least. BUT THE ANTIBIOTIC SHE PRESCRIBED, as usual, it is over the recommended dose for a child and has to have prior authorization by the insurance company.....OR WE COULD PAY $1475.00 FOR IT. (YES, THOUSAND PLUS.) Been through this crap before, and of course it is Friday at 5 pm when Target tells me this and so fat chance in Hell of getting the Rx before Monday night, if I am lucky at that even then. I finally spoke "authoritatively" enough that I talked them into running 20 pills through the insurance at "recommended dose" and that worked. That would have given me enough actually for about 3.5 days. BUT GUESS WHAT? After all that, Target didn't even have the right milligram dosage to fill.....sigh.....it is ordered and I can start fighting again on Monday. Totally drained and tired of fighting for what should just be help for my child.

In between all of that, I've tried to do gluten-free foods all day, comfort this kid who is now having hysterical emotional crying episodes, and label everything in my kitchen with a black magic marker that says "gluten-free" so I am not so crazy and inept when I am cooking. We have been to three supermarkets in the last 2 days buying everything that is reputably gluten-free. Yes guys, I take it all to the nth degree. I want him well and happy.

Dinner tonight (and no pizza yet- I know the tomato would kill his stomach): Choice sirloin 3 oz broiled, baked potato with Promise Fat Free butter, Green peas. He is sick, sick, sick of CHICKEN & RICE HOMEMADE SOUP which I have probably cooked 20 times in the last 30 days (except I used bouillon cubes which I see now have gluten in them). All the bland stuff for the last 30 days -- glutenized, and he is sooooooo already exhausted of those things.

So far tonight, so good. His emotions though are so intense, and he is stuck to me like glue. I am totally washed out. My husband has been trying to play with him / watch a movie, etc., while I try and continue to educate myself on gluten. I have a medical background and "almost" a degree in Biology...........but my gosh that was decades ago. So I can "get" the doctor talk and the big diagnostic words, but not the WAY YOU LIVE WITH THIS ON A DAY TO DAY BASIS OR THE FINE TUNING AND TWEAKS TO MAKE IT THROUGH -- Ya'll are giving that to me on a silver platter.

You know I don't even know if he has Celiac/Gluten Intolerance. Sure sounds like it to me. I do know you guys are smart, resourceful, and been through absolute physical and mental pain to get to where you are now -- and it sounds like without much help from your first 25 or so doctors. My heart goes out to you. Even if the kid doesn't have Celiac, I have learned a new appreciation and respect for each of you.

And yes I know the Celiac blood test can come back negative and be false. The GI specialist was shocked that when the kid had an EGD a few weeks ago that biopsies were not done. Me too.

Tomorrow: Be bright-eyed and bushy tail again, continue organizing kitchen and labeling (and if the kid is celiac disease, then I will give everything that is gluten away to a needy family), then tackle the bathrooms for gluten hygiene stuff, and of course clean up again. And re-read all your posts. The details from ya'll are terrific.

By the way, I am 2 months postop from gallbladder surgery. I thought I knew what acid reflux and pain was, but I didn't. Nothing I've had compares to what my child has been going through. And I was happy to just eat a cracker or rice when I was sick, but then I wasn't 15 y/o with an insatiable appetite either. He has lost 20 1bs, I've now lost 10 1bs and was not overweight to begin with. I now hate food, but not as much as lawyers, and maybe doctors.

Turning in for the night and tuning out.

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I don't know whether I have any more advice for you, but your story took me back to when my son was so ill from celiac at age 15 that he couldn't go to school. I understand your heartache and need to know how to make him feel better. Yes, it's impossible for him to attend school while he is vomiting and having D 24/7--that was also my son's problem. Finally, when he turned 16, he refused to go to school one morning, began crying, and begged me to give him one reason why he should graduate from high school. He'd pretty much given up the will to live...and he felt as though he would be dying soon from the unknown ailment he was suffering from (and that I also suffered from) and didn't want to spend his last days trying to suffer through his classes. It was then that I threw myself into researching what could be wrong....what the doctors couldn't figure out. I had been so ill and nutritionally deficient for the two previous years, I could barely get out of bed and had given up trying to figure out what was wrong. However, my son's health had begun to suffer so much at that point, I went back to the drawing board. It was only then that I came across celiac and knew immediately from the list of symptoms that my son and I (and my mother) suffered from celiac disease. Just knowing what was wrong helped in the beginning, so I hope that you'll continue feeding your grandson a gluten-free diet even if the tests come back negative, because I believe you're on the right track. He'll do best with "real" food, so you really don't have to bother buying gluten-free processed foods. You mentioned that your grandson is overweight--and this is generally caused by over-consumption of grains and fruits and low consumption of healthy saturated fats and protein. However, because you've lost your gall bladder, I realize that you probably don't prepare meals that are high in saturated fats, which is understandable.

As I mentioned in my previous post, the book I recommended will help tremendously with feeding your grandson. It is VERY exacting, and the diet will help him return to a healthy weight without feeling deprived. I wish I had read such information when I was teenager--my health would be so much better if I had. The key to a healthful diet is to balance carbs (and that includes fruits and vegetables) with proteins and healthy saturated fats (such as organic butter, nut butters, avocados, and organic cheeses). People with damage from celiac have trouble absorbing fat-soluble vitamins, and the fat is essential for helping our bodies absorb enough nutrition. Most people think fat is evil, but it is, in fact, the most important macronutrient for humans to consume.

Your grandson is lucky to have such a caring advocate for him....and, before long, the gluten-free diet will be easier to deal with and he'll begin to feel better. Remember, 90% of our serotonin is produced in the gut and not the brain. Once his gut flora is reestablished, his physical and emotional states should improve. L-glutamine is often recommended to help heal the gut, and there is a medical food with L-Glutamine and probiotics that helped me return to near-perfect digestive health: Metagenics UltraClear Sustain Medical Food. I don't believe you need a prescription to order it. You simply mix a tablespoon of it into a smoothie. My 24/7 D cleared up almost immediately.

Good luck to you!

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By the way, I am 2 months postop from gallbladder surgery. I thought I knew what acid reflux and pain was, but I didn't. Nothing I've had compares to what my child has been going through. And I was happy to just eat a cracker or rice when I was sick, but then I wasn't 15 y/o with an insatiable appetite either. He has lost 20 1bs, I've now lost 10 1bs and was not overweight to begin with. I now hate food, but not as much as lawyers, and maybe doctors.

Turning in for the night and tuning out.

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First, this is for PRICKLY:

We cooked a simple, kinda light, gluten-free pizza tonight together, light on the sauce, skim mozzerella cheese, pineapple tidbits, canadian bacon ham, and a few turkey bacon bits. He was EXCITED.....and we both knew there was a huge chance of expulsion. It was actually okay for the taste, crust a little weird. Think I need a real pizza pan. It has been 2.5 hours and NO REFLUX AND NO EXPULSION.

This has been the highlight of his day :D . Thanks for sticking up for the guys ;)

And in honor of all the ladies and mothers: He has kept down grapes today as well.

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Fantastic! Good for you and for him. Hope it stays "calm" :)

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TO IRISHEART:

OhMyGosh! Incredible. Your post is inspiring. I have printed off so many "lists" of gluten-free and nonGF that my piles are scattered everywhere and I need hours to organize, inbetween the demon bathroom "inspection and cleanup".

I do not know what "PM" means, but yes I would like for your to email me your printed information. I am VERY lucky to have the internet TODAY and this forum which provides far more than most of you had on your own journeys.

I feel like I've been hugged :P

I have a lot of catching up and posting back to everyone who has "given" to me.

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FOR ROSETAPPER23:

First, I don't know how you physically drug yourself out of bed to e-v-e-n care for your son when he was 15.....except through that stronger-than-life love we each have as MOTHERS! Your son is so blessed to have had you fighting for his life, and in the end you as well were rewarded in your own personal health. I am happy for you that you didn't give up and did it!

I got a lot of strength reading your post. I am not physically ill, and here you were desperately ill and still had to do all of this? My previous pity-party seems very small and stupid now.

You, like IRISHEART are true survivors and heroes.

I have been making a list of ideas that each of you have posted about probiotics, foods, and these life-saving books. I DO pay attention!

Although M-W is full of more tests and doctor appointments and I want answers and help ASAP especially with the nightime reflux, I AM looking forward to everything being closed for the Thanksgiving Holidays and a reprieve from all the doctors....and just simple gluten-free holidays with my grandson and my husband.

I am posting one final post tonight before doing "real life everyday work -- bills, clothes, etc". It will explain the exacerbation of the my grandson's anxiety and panic, which I believe to have totally intensified the current GI distress, whether it is Celiac or not.

Thanks for everything :D

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FINAL POST TO EVERYONE WHO IS FOLLOWING MY 15 Y/O:

After sharing my gloom and doom with each of you on Friday night, and tuning out at 11 PM, I never got to go to sleep. I went upstairs to make my final check on my grandson. From there it went from panic to hysterical breakdown. Hours. Holding him and listening to his sobs and terror that he had been holding inside for a long, long time:

My daughter, his Mother ployed and introduced him to his estranged, terminated FATHER over the course of this past summer, without any warning to the child. My husband and I had always told him that he was completely SAFE from any contact until he was 18 y/o, and THEN it would totally be HIS decision if he wanted to see him, and HIS decision as to time and place.

So my daughter destroyed that safety and the child was thrown totally unprepared for that initial meeting. I think there have been several. I did not ask, I just LOVED AND ENCOURAGED HIM THAT HE WAS NOT BAD, that his father was NOT going to go to the "electric chair" for breaking THIS law....OMG -- how could she threaten her own child with THAT? Much much more.....I likened it to "confession in a booth with a priest", and we are not Catholic. Like a movie. A bad movie.

He has never had or sustained much contact with his Mother. He has been refusing to accept any of her invitations for nearly two months now.

Tonight has been my first "break". The child did not want to see his father, nor wants to continue any contact. He never wants to see his Mother again. Done.

So guys, the anxiety AND DEPRESSION is more than HUGE. Children that keep BIG SECRETS and have been threated ARE VICTIMS OF ABUSE. This is and was emotional abuse. And this was killing him quicker than the GI dysfunction/disease.

My husband and I are now wearing FULL ARMOR, and have removed his Mother out of his life....which was also the connection to his father (who would have no other way of seeing this child.)

My grandson is totally relieved and overall feeling much better. A little disappointed though that the GI distress is still so prevalent!

It has been an exhausting, weary weekend, but many answers to a very complicated situation. I am truly thankful that he trusted me with his BIG SECRET and let me be thee adult and carry that burden, and let him rely on his grandfather to keep him SAFE.

All of a sudden now, going gluten-free doesn't seem so awful to him and he has HOPE.

Much more I could say, but I would probably go to jail for my own thoughts about this horrid situation he was placed in.

Must sleep now, and start again tomorrow with the doctors. I thought you all deserved to know since you have clearly taken the time to try and help us.

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