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It Was Supposed To Be Over At Gluten Free! Help :(

ibs celiac refractory celiac bloating constipation pain help me not healing

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#46 FruitEnthusiast

 
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Posted 21 May 2014 - 08:12 PM

It sounds like you're on the right track, learning the different things to look for. These are all good questions. The supplement sounds pretty good. Most people with leaky gut, myself included, take L-Glutamine for it. I would get some in addition to the supplement so you're having more of it. I try to take it twice a day. Make sure you're getting enough Vit D - that can get low for many of us. Have you had your vitamin and mineral levels checked - it's really important now because of malabsortption - a damaged gut can't absorb everything right. It's not just villi that can get damaged, the gut lining too - that's what leaky gut is. Link on leaky gut below.

 

Have you read the newbie 101 info yet. I think it's at the beginning of the "coping with" section. Make sure you've checked non-food products for gluten like toothpaste and all the health and beauty products you use that could get into your mouth - I'm sorry to have to tell you this stuff - I know it's a lot to think about. I had to have someone help me check that stuff when I was new, it was too complicated. Hopefully someone can post more about this.

 

It's really important to examine all the foods that could be a problem. I don't think there are tests for food sensitivities. One common one to consider is nightshade plants, I had to stop those, many of us have a problem with those - it's tomatoes, potatoes, all peppers, and eggplant.

 

Foods that irritate the digestive lining should be avoided for now because you're lining is still so sensitive at this point. I wouldn't have alcohol, onions, and I'm not sure about coffee, but anything harsh. Avoid sugar. Also hard to digest things can bother you. This may be a repeat of what I or someone else has said but stick to whole foods with one ingredient, nothing processed.

 

I believe in the idea that your food has to be your medicine - helpful to healing your gut - before other things are going to help. It takes a while to get that right - it's trial and error for all of us. It'll be up and down while you figure that out, but as you go, you'll learn more about what to do and what not to do, and that will help you keep finding the answers - and you will! Your hard work will pay off!

 

There is a test for SIBO, ask about that when you go for your Celiac appt. Keep us posted!

 

Here's a link from the Dr. Oz website about Leaky gut:

http://www.doctoroz....ling-you?page=2


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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


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#47 weluvgators

 
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Posted 21 May 2014 - 08:28 PM

Have you been tested for H. Pylori?  I know it is a bacteria, but I hadn't seen any specific mentions of the bacteria/parasites that you have considered and investigated.  Good luck getting it sorted, and I hope your trip to the celiac center is productive.

 

I hope you find relief and improvement soon.  Our journey to wellness took a very long time, many doctors and lots of denial to overcome.  We still haven't fully figured out some of the pieces.


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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#48 Questore

 
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Posted 22 May 2014 - 02:13 AM

There are a ton of things that can be a part of what is wrong with you...I am about halfway through a massive book called "Why Isn't My Brain Working" by Dr. Datis Kharrazian, which goes over all the links between Gluten Sensitivity/Celiac Disease and other things that the body does with the antibodies to gluten, and related foods, and then how that inter-reacts with your digestive system, brain, and vagus nerve, messing up how your brain is communication with your gut and vice versa, and even how the same gluten anti-bodies can attack other things in your body.  Ton's of info and good explanations about how some things can just flat out interrupt the directions your digestive system receives from your brain, how your hormones will mess things up, how stress makes things worse, and sometimes better.   

 

You can download it at Amazon Kindle for $10.00.  I already found out all the things that I will need to watch for after my tests are back, even though I have already gone off gluten and dairy, and found a lot of things that I may need to eliminate one by one until I am well, because of the other problems I already have.

 

It seems that once you have gone gluten free for long enough to let your digestion heal, and your body still doesn't actually seem to be healing, there are a lot of other things that you may need to eliminate, one by one, or get tested in order to find out what other supplements and herbs can help you heal specific things. 

 

Since you are not yet receiving much relief just going on a Paleo Diet, the book lists a lot of tests that can be done to check for problems related to, but not triggered by gluten, but by some things that are in a Paleo Diet, or are problems in other parts of your body because of the Celiac that just haven't been tested for, since there are a lot of finer points in testing to go after once you have made your maximum adjustment to a gluten free lifestyle, and are still sick.  There are also many supplements listed on a problem by problem basis to talk to your Doctor about, or to a Nutritionist.

 

I hope you find your answers soon.

.


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Allergies/Asthma 1962   Lactose Intolerant 1964   Anxiety, Depression and Migraines since 1964  

Thyroid deficiency 1971   IBS 1974   Pre-Diabetic 1988   Chronic Anxiety Disorder 1988   Chronic Depression 1988  

Auto Accident w/broken Neck 1995   60%  Disabled 1995   PTSD  1995  

Trauma Induced Fibromyalgia 1995   Chronic Fatigue Syndrome 1995   Diabetes II 2011  

Niece Diagnosed with Celiac Disease 2013  Genes show Celiac, but not Blood Tests

  Gluten Free 5/20/2014   Diagnosed Celiac -  10/17/2014 on Symptom Remission

:) Gluten Free 5 months and 26 days makes a lot of difference!!! :)

 


#49 AnnaChristine18

 
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Posted 22 May 2014 - 08:12 PM

It sounds like you're on the right track, learning the different things to look for. These are all good questions. The supplement sounds pretty good. Most people with leaky gut, myself included, take L-Glutamine for it. I would get some in addition to the supplement so you're having more of it. I try to take it twice a day. Make sure you're getting enough Vit D - that can get low for many of us. Have you had your vitamin and mineral levels checked - it's really important now because of malabsortption - a damaged gut can't absorb everything right. It's not just villi that can get damaged, the gut lining too - that's what leaky gut is. Link on leaky gut below.

 

Have you read the newbie 101 info yet. I think it's at the beginning of the "coping with" section. Make sure you've checked non-food products for gluten like toothpaste and all the health and beauty products you use that could get into your mouth - I'm sorry to have to tell you this stuff - I know it's a lot to think about. I had to have someone help me check that stuff when I was new, it was too complicated. Hopefully someone can post more about this.

 

It's really important to examine all the foods that could be a problem. I don't think there are tests for food sensitivities. One common one to consider is nightshade plants, I had to stop those, many of us have a problem with those - it's tomatoes, potatoes, all peppers, and eggplant.

 

Foods that irritate the digestive lining should be avoided for now because you're lining is still so sensitive at this point. I wouldn't have alcohol, onions, and I'm not sure about coffee, but anything harsh. Avoid sugar. Also hard to digest things can bother you. This may be a repeat of what I or someone else has said but stick to whole foods with one ingredient, nothing processed.

 

I believe in the idea that your food has to be your medicine - helpful to healing your gut - before other things are going to help. It takes a while to get that right - it's trial and error for all of us. It'll be up and down while you figure that out, but as you go, you'll learn more about what to do and what not to do, and that will help you keep finding the answers - and you will! Your hard work will pay off!

 

There is a test for SIBO, ask about that when you go for your Celiac appt. Keep us posted!

 

Here's a link from the Dr. Oz website about Leaky gut:

http://www.doctoroz....ling-you?page=2

Yes I've looked at all the "newbie" stuff back when I was frst diagnosed 5 months ago...

And I've been taking l-glutamine on it's own for a few months but it didn't do anything, which is why I got the GI revive supplement. My diet, like I said, is far more than just gluten-free. There's no cross contamination going on. There just isn't. And I did get tested for SIBO. I don't have it :/

I feel like since I"ve already eliminated so much what else can I try? eggs? nuts? I've already eliminated sugars, processed foods, all grains, all dairy, and certain things I've noticed that hurt my stomach even more (such as broccoli and beans)


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#50 AnnaChristine18

 
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Posted 22 May 2014 - 08:15 PM

Have you been tested for H. Pylori?  I know it is a bacteria, but I hadn't seen any specific mentions of the bacteria/parasites that you have considered and investigated.  Good luck getting it sorted, and I hope your trip to the celiac center is productive.

 

I hope you find relief and improvement soon.  Our journey to wellness took a very long time, many doctors and lots of denial to overcome.  We still haven't fully figured out some of the pieces.

I've heard of that btu I  haven't been tested for any bacteria or parasites or anything like that. Yet (hopefully) I've wanted to get a stool test for a long time but my GI doctor wouldn't sign off on it... (then again, she also said she doubted I was Celiac because my main symptom is constipation, not diarrhea. After the biopsy and bloodtest showed it she seemed surprised...)

Are infections like this common for people with Celiac Disease? I pray it's something simple like this.


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#51 AnnaChristine18

 
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Posted 22 May 2014 - 08:25 PM

Also, uhm.. No one's heard of IgG food intolerance testing? I know it's somewhat controversal, and that elimination diets are typically what people do to try to figrie stuff out but I've already eliminated SO much and it still seems I react to absolutely everything I eat.

 

I feel like I'm drowning.

I've been on this paleo diet for 5 months and I feel worse and worse everyday. I don't know how much more I can take of this.. My stomach is stretched out so far it literally hurts to breathe!! I don't care what it is I'll have to do as long as I can get better. No one's been able to help me. My old GI doctor went as far as saying that it's IBS and I'll probably just feel like this forever. Granted, she also originally doubted I had Celiac Disease (before I got the biopsy and bloodwork) soley because diarrhea wasn't one of my symptoms... -__-

I don't know how much more of this I can take. THis whole thing has taken over me entirely. I'm not myself at all anymore. I don't care about any of the things I used to care about. I rarely even leave me house. I'm in constant agony 24/7...sometimes I"ll spend entire days crying... I feel like I'm being punished in a way. I was never really a happy person and now I realize how much I should have appreciated my life while I still had one.

I'm afraid I'll have to live like this forever. After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else.

Sorry for whining like this lol I know some of you don't really wanna hear it. I know my parents and my boyfriend are tired of hearing it. All I talk about it Celiac Disease and trying to find out what's wrong. I tried the FODMAP diet, the SCD diet, I once even did 2 weeks of eating nothing but homemade soup, gelatin, and baby food veggie purrees. Nothing helps at all. I never get a chance to breathe.


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#52 FruitEnthusiast

 
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Posted 22 May 2014 - 09:55 PM

my main symptom is constipation, not diarrhea.

 

You have this in common with me. I know a lot about dealing with constipation so let me know if I can help with that at all. If you are not going enough, that will cause you to feel terrible, trust me, and it can definitely cause the bloating. One thing I will mention is that it's important to get the right balance of fiber. Insoluble fiber speeds up digestion and soluble fiber slows it down. For the most part insoluble fiber is the outer layer of foods, like the skin on an apple, and soluble fiber is what's inside, like the white part of the apple. There are some exceptions. It's crucial to get enough insoluble fiber. Green Beans, peas, and artichokes are some good sources.

 

Food Intolerance testing is controversial and I don't know much about it but there are people who have used it on this site, and others who don't believe in it, if you want to post a separate topic about to get more responses.

 

You WON'T feel like this forever. GI's are generally disappointing. There's A Lot they don't know and they are not open to new concepts. A Naturopathic Doctor (ND) can be helpful thinking outside the box, and GI's won't help much with diet, strange as that is. GI's are pretty clueless about things outside of tests, prescriptions and surgery.Your GI sounds quite unhelpful and discouraging, I would seriously find a different one.

 

You're right though, there has to be something that is still off if you're feeling that bad. When you figure it out you will feel better. The way you're feeling now is not permanent, but it is something that needs attention right away. You need relief.

 

I'm really wondering about the constipation issue. If you are having trouble with that and want to discuss it more thoroughly you can PM me. I've learned a lot about it, and not going enough will make your life feel like hell. It can cause severe psychological symptoms as well as physical ones when it gets bad enough.


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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#53 1desperateladysaved

 
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Posted 23 May 2014 - 03:45 AM

I have done the IgG food intolerance testing and felt it was a real help to me. It tests the blood for antibodies to foods that you are eating.  You must be eating the foods to be a valid test.  I also have used a rotational diet to help find foods I don't tolerate.  You might try new meats and new vegetables, that you hadn't eaten over the years that you were ill.  These you shouldn't have antibodies too.

 

Please don't give up.  The process can be complicated, but it does get easier as one peels off layers of illness.  You are traveling up hill, but even when you don't see through the fog, when you are going up, you will get somewhere.

 

Feel free to Pm me if you want to discuss the tests further.  Natural practitioners often use them, and I use natural practitioners to help me in healing after 30+ years of trouble.


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#54 surviormom

 
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Posted 23 May 2014 - 05:24 AM

Also, uhm.. No one's heard of IgG food intolerance testing? I know it's somewhat controversal, and that elimination diets are typically what people do to try to figrie stuff out but I've already eliminated SO much and it still seems I react to absolutely everything I eat.

 

I feel like I'm drowning.

I've been on this paleo diet for 5 months and I feel worse and worse everyday. I don't know how much more I can take of this.. My stomach is stretched out so far it literally hurts to breathe!! I don't care what it is I'll have to do as long as I can get better. No one's been able to help me. My old GI doctor went as far as saying that it's IBS and I'll probably just feel like this forever. Granted, she also originally doubted I had Celiac Disease (before I got the biopsy and bloodwork) soley because diarrhea wasn't one of my symptoms... -__-

I don't know how much more of this I can take. THis whole thing has taken over me entirely. I'm not myself at all anymore. I don't care about any of the things I used to care about. I rarely even leave me house. I'm in constant agony 24/7...sometimes I"ll spend entire days crying... I feel like I'm being punished in a way. I was never really a happy person and now I realize how much I should have appreciated my life while I still had one.

I'm afraid I'll have to live like this forever. After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else.

Sorry for whining like this lol I know some of you don't really wanna hear it. I know my parents and my boyfriend are tired of hearing it. All I talk about it Celiac Disease and trying to find out what's wrong. I tried the FODMAP diet, the SCD diet, I once even did 2 weeks of eating nothing but homemade soup, gelatin, and baby food veggie purrees. Nothing helps at all. I never get a chance to breathe.

You are not alone.  You can PM me anytime as well.  It is exhausting and you want to scream, cry, give up, after talking to a GI you can even think am I nuts?  But, no, you know your body, and the test proves the food issues even if the GI tests are not showing all of them.  Being able to wear something one day and then not the next just because you ate something wrong.  Only someone that goes through it can understand it.  The C my hubby and I joked about it for years, until we realized how serious it was.  Last time in they weighed me, and I said really I gained 7 pounds in a week?  They will not do a colonoscopy, as I am not 50 yet??  Mostly what I eat these days are protein shakes and veggie juices.  I have a list of reflux friendly foods, low fodmap foods, of course gluten-free, and my food testing list, I match them up and see what I can have, and go from there.  I do not even like to go out anymore and I used to love to go out to dinner, we live around awesome restaurants.  Anyway, I get it.  You are not alone.... 


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#55 GF Lover

 
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Posted 23 May 2014 - 08:22 AM

AnnaChristine.

 

You said "After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else. " 

 

Are you really taking a hundred supplements a day.  Um...That could be a problem.  Why?  Does your Doctor approve of all the suppliments?  Have you checked for Interactions of all the Suppliments?

 

Colleen


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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

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#56 surviormom

 
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Posted 23 May 2014 - 09:35 AM

AnnaChristine.

 

You said "After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else. " 

 

Are you really taking a hundred supplements a day.  Um...That could be a problem.  Why?  Does your Doctor approve of all the suppliments?  Have you checked for Interactions of all the Suppliments?

 

Colleen

You can have your vitamin levels checked.


  • 0

Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#57 icelandgirl

 
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Posted 23 May 2014 - 03:47 PM

AnnaChristine...I'm so sorry you are going through this.  I can feel your frustration.  As a mom of 3 I just want to give you a big ((((hug))).  I hope you are able to get some answers.  Know that you are not alone.


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
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#58 AnnaChristine18

 
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Posted 23 May 2014 - 08:34 PM

AnnaChristine.

 

You said "After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else. " 

 

Are you really taking a hundred supplements a day.  Um...That could be a problem.  Why?  Does your Doctor approve of all the suppliments?  Have you checked for Interactions of all the Suppliments?

 

Colleen

lol no obviously not a hundred :P But I do take a lot.
 I'm taking a supplement caleld DIgestive Advantage Constipation formula which helps me stay somewhat regular. I take a fish oil pill. A probiotic (acidophilus). Digestive enzymes with every meal. L-Glutamine on it's own, and also something called G.I. Revive powder which also contains L-Glutamine along with glucosamine, citris pectin, aloe vera, slippery elm, marshmallow, mucin, chamomille, okra extract, cat's claw, msm, prune powder, and zinc. I've heard many good things about the GI Revive which I just odered about a week ago, so I guess it's too soon to tell if it'll help. I also take regular vitamins (which yes are gluten-free....i know some of you are going to ask that)


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#59 GFinDC

 
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Posted 24 May 2014 - 04:43 AM

Hi AC18,

 

The last time I got glutened good it took about 6 weeks for the symptoms to fade,  So you are getting close to that time since you were glutened.  Just a thot.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#60 GF Lover

 
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Posted 24 May 2014 - 05:25 AM

lol no obviously not a hundred :P But I do take a lot.
 I'm taking a supplement caleld DIgestive Advantage Constipation formula which helps me stay somewhat regular. I take a fish oil pill. A probiotic (acidophilus). Digestive enzymes with every meal. L-Glutamine on it's own, and also something called G.I. Revive powder which also contains L-Glutamine along with glucosamine, citris pectin, aloe vera, slippery elm, marshmallow, mucin, chamomille, okra extract, cat's claw, msm, prune powder, and zinc. I've heard many good things about the GI Revive which I just odered about a week ago, so I guess it's too soon to tell if it'll help. I also take regular vitamins (which yes are gluten-free....i know some of you are going to ask that)

 

What are some of those supplements for?  They are not typical for a recovering Celiac or the Nutritionally deprived. Do they have any interactions with each other?

 

Colleen


  • 0

HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

gingerbread-man-smiley-emoticon.gif






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