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Rachel--24

Omg...i Might Be On To Something

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Yeah...my vacation has started but I'm not doing anything special.

I'm kind of bummed because I ran into some trouble again...I'm pretty sure its the Auxigro. This has got to be by far the most frusterating part of my whole ordeal. How can I ever get better if they put msg into the produce? I'll just keep getting sick everytime I try to add something. It sucks more than anything else I've dealt with....mainly because I have absolutely no control of the situation and no way of possibly knowing whats been sprayed and what hasnt.

I had thought I had finally found a safe yam and was eating it for about 3 days. Right off the bat I had loose stools but this only happens the next day when I wake up. I didnt think the yams could have caused it since I felt fine after eating them. I actually wasnt feeling bad the next day either....I just had the enourmous loose stools. It totally crept up on me. For 3 or 4 days now I've had massive loose stools in the am, I've lost a few lbs., slowly I started noticing alot of inflammation in my neck and shoulders, some mild brainfog, increased sensitivities, burning eyes. This morning I woke up with alot of shoulder and back pain, my hands have major excema, my head is swollen, and I'm pale with fluid retention.

problems.

Oh....my ears are getting infected again too plus I got a little rash on my stomach from my belt touching my hypersensitive skin. This sucks. :angry:

Thats awful! I wish you were feeling better, darn! come on just lets figure this out!

sigh...

I hate having the feeling like I dont have control over my body, thats what I have now,,, so I dont know if I can fix anyone else, cant fix myself.

Im having a real flare up myself, now this time, the head pain is excrutiating, the worst yet, and I have had the urge to throw up all day, and slimey coating on my tongue, and swollen tongue, neck, and a metallic bitter taste on the tip of my tongue and salivating. My eyes were actually blurry and full of pressure today, i havent had that sensation before as much, scary!!!

i hope this goes away, soon, im in so much pain, im really scared to eat too.

I was at work last night in the hospital, and the nurse asked me about one of the patients temp being 101 and how come I didnt let her know, and I totally forgot, I was so brainfogged.

I started crying and said im in so much pain with my head and im scared cause my throat was swelling up and she said I should do somthing about it and not just talk about it, that I should go down to the ER cause the throat is not somthing to mess with.

I felt like its true I should do somthing about it, but at the same time, Im baffled as to what at this point, im trying the best I can with my diet and taking everyones suggestions and tips here, and at home from friends and family, and my own, and im not feeling better. It almost seems like im slowly getting worse.

I just wanted to die, is all i kept thinking about if this doesnt get better. And im getting myself kind of depressed thining about dying for the past several days as the only escape or control I have.

Sorry dont want to depress anyone else reading this out there.

seriously tho, im scarred.

Christina

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Andrea, you are so lucky to be able to eat dairy. Your post had me so hungry :)Eat a bowl of ice cream for me, I will enjoy it vicariously.

Robbin,

I had one today too. I am mildly allergic to dairy but not intolerant. For some reason I'm not allergic to cheddar cheese. Don't know why that is unless it's the aging process.

That was me Andrea. I just received it yesterday and I have been looking through it, looks really good. I can't eat like this everyday, or even once a week, but I look forward to trying out some of the recipes for holidays and special occasions :)

Julie,

I just got the flour mixed for the muffins and pastry stuff with the superfine flour. I can't do the bread flour mix until I get more potato starch. My hubby wants me to start making a lot of muffins and since they can freeze for a while I need to start working on it.

Where'd your picture go?

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C,

Sorry you're feeling bad. I dont really have any advice for you except for to keep a detailed diary and try to figure out whats in your diet or environment thats causing reactions. Its taken me a long time to figure out some of my problem foods but we have to start somewhere. I dont know what your diet is like but I have to stay away from processed foods and I only drink water. I also had to make sure everything I put on my skin, face, hair...etc. is all gluten-free.

Hope you feel better soon.

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Guest Robbin
:( omg, Christina, you worry me. I hope you have someone to help you. I can't imagine what you must feel having to care for patients and being so ill yourself. It sure sounds like a glutening or maybe your medicine? I hope you and Rachel both feel better soon. Geez, we are all falling apart. Many prayers and hugs your way :)

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Im having a real flare up myself, now this time, the head pain is excrutiating, the worst yet, and I have had the urge to throw up all day, and slimey coating on my tongue, and swollen tongue, neck, and a metallic bitter taste on the tip of my tongue and salivating. My eyes were actually blurry and full of pressure today, i havent had that sensation before as much, scary!!!

i hope this goes away, soon, im in so much pain, im really scared to eat too.

I started crying and said im in so much pain with my head and im scared cause my throat was swelling up and she said I should do somthing about it and not just talk about it, that I should go down to the ER cause the throat is not somthing to mess with.

I felt like its true I should do somthing about it, but at the same time, Im baffled as to what at this point, im trying the best I can with my diet and taking everyones suggestions and tips here, and at home from friends and family, and my own, and im not feeling better. It almost seems like im slowly getting worse.

I just wanted to die, is all i kept thinking about if this doesnt get better. And im getting myself kind of depressed thining about dying for the past several days as the only escape or control I have.

seriously tho, im scarred.

Christina

Christina,

DON'T GIVE UP!!!

You are such a vital part of this community and I always enjoy reading your posts. Are you super sensitive to msg also or could this be something else. How long have you been gluten free? What other foods are you avoiding? Did you go through what you ate the last few days to see if anything was different? I can understand you being depressed but fight, fight, fight. We can all get through this with each others help. Please post each day and let us know how you are doing. We love you :wub: and are concerned about you and want you to feel better. Remember, no man is an island. In times like these our natural inclination is to run and hide but we've got to look up and stand and fight. I will look for your posts tomorrow and hope that together we can find out what caused your allergic reaction.

I've got a baby I've got to tend to. :P

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On the bright side my med doesnt seem to be having that much of an effect as far as the drowsiness. Maybe its too soon but I did feel it last night after taking my first pill...I've been fine after taking it 3 x today though. I'm starting to feel a little better than earlier today...it seems like my reactions get shorter. I'm not sure if its just because I figure out the offending food and remove it faster or because I'm healing more. :unsure:

I'm thinking its probably because I fix my diet right away whereas before I just kept eating salads or cucumbers or whatever not thinking fresh produce could hurt me. No wonder I lost so much weight back then. Sheesh...I lost 3 lbs just in the last few days...I'd hate to keep going like that.

Some of the inflammation is starting to go away now. My arms, back and shoulders are feeling alot better. It had to of been the yams. <_<

From what I've read the root vegetables absorb the most auxigro since they are grown in the ground. Potatoes, turnips, carrots, yams, onions and those types of veggies.

Is jicama a root vegetable? I used to eat it while on the candida diet and I would react to it. I had one turnip and it was memorable...I wrote in my diary that turnips are very bad and to never try one again. :blink:

I sorta feel like the produce dept. is a mine field and I just try not to get blown up. :blink:

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I sorta feel like the produce dept. is a mine field and I just try not to get blown up. :blink:

Sorry Rachel, but I gotta laugh at that one...hopefully with you. :P:lol::P:lol:

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Guest katzmeow21

Interesting this whole corn thing. First off... I notice you are in the Seattle area too. I live in Tacoma.

anyway, I also just in the past few days realize that I am not doing well after eating corn. I also thought I was not doing well after eating my baked goods(all made with xanthum and yeast) Mnnn.....Both of us enlightened at the same time about corn... : B) unsure: :lol:

I'll tell you, this life of investigating everything we put in our mouths is sometimes overwhelming.

My symptoms are flulike, feel very tired, muscle spasms (actually can see muscles kind of jumping mostly in legs but not limited to) Lots of brain fog, waves of anxiety/depression. Some D with lots of bloat.

Anyway, great observation and good luck

Also, have you heard about a new probiotic called HLC MindLinx by Pharmax. My naturopath is Seattle suggested I start taking it. It is supposed to really help break down gluten and dairy. That does not mean celiacs can eat wheat again :( but it does mean that slight amounts BY ACCIDENT might be handled better.

So check it out. I will post again once I have been on it for a few months and see how I do.

It would really be beneficial to check it out on the internet and get all the facts. It is also supposed to be fantastic for ADHD and autism problems.

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Today I heard about a technique a friend's mother used when she ate. It sounds really strange but I feel desperate enough to try it, here it is: you stand up, you take the food you are going to eat in your hands (in a bowl is O.K.) and hold it in front of you, up in the throat area and you wait to see whether your body moves towards it or away from it, if your body leans towards it your body wants it, it will accept it and if your body moves away from it, don't eat it. Apparently this woman is some kind of healer who learned this from her mother....

Christina, I'm sorry to hear that you are feeling so sick.

And Rachel, what a drag to have a holiday and feel ill.

I'm having medium gut pain and major back inflammation these days but somehow I am easier in the midst of it and I'm pretty clear that is because the gluten is largely (except when I accidentally gluten myself) out of my diet. I don't feel like I am being poisoned by the world and that is big for me.

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Also, have you heard about a new probiotic called HLC MindLinx by Pharmax. My naturopath is Seattle suggested I start taking it. It is supposed to really help break down gluten and dairy. That does not mean celiacs can eat wheat again :( but it does mean that slight amounts BY ACCIDENT might be handled better.

My doctor had me on HLC High Potency probiotics. There were 2 different kinds...one with FOS and one without. He wanted me on the one without. ...I'll probably take it again in the future. I'll have to ask him about the MindlLinx next time....I looked it up and its actually alot cheaper than the one I was taking.

Today I heard about a technique a friend's mother used when she ate. It sounds really strange but I feel desperate enough to try it, here it is: you stand up, you take the food you are going to eat in your hands (in a bowl is O.K.) and hold it in front of you, up in the throat area and you wait to see whether your body moves towards it or away from it, if your body leans towards it your body wants it, it will accept it and if your body moves away from it, don't eat it. Apparently this woman is some kind of healer who learned this from her mother....

Rinne, I'll try this techniquue. What the heck right? I just cant imagine my body moving away from any food thats right in front of my face! :lol:

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Hmmm...looking back through my diaries every single time I ate a yam I had massive stools the following morning. <_<

Seems like I was smart enough back then to not continue eating them though. This time I ate about 6 yams before I clued in. I still had loose stools today but its probably not all out of my system after only one day. Guess I'll see what happens tomorrow.

Besides the loose stools everything else I wrote in the diaries about my symptoms after the yams was identical to the symptoms I'm having now. I could write the exact same thing today that I did a year ago after I ate a yam. I never knew when I started my diaries how useful they'd end up being for me.

My mom used to bug me about sticking to it since alot of times I wouldnt bother with it. I felt like none of it was helping or making sense at the time. Its been a long time now and its finally become an invaluable tool.

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I never knew when I started my diaries how useful they'd end up being for me.

My mom used to bug me about sticking to it since alot of times I wouldnt bother with it. I felt like none of it was helping or making sense at the time. Its been a long time now and its finally become an invaluable tool.

Okay, I've been convicted, lol. I was determined to keep better journals, and did it for about 3 weeks, then did what I always do and got lazy and stopped a few days ago. I still write down what I eat, but I don't keep detailed info on symptoms. Sometimes it's overwhelming, lol, but I need to do that if I'm ever going to get a handle on this all.

It probably would have been very helpful yesterday when I felt like throwing up to be able to look back over the previous day to see what the timeline of food versus symptoms were.

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Rinne, I'll try this techniquue. What the heck right? I just cant imagine my body moving away from any food thats right in front of my face!

I just tried it with raspberries and found that I had to hold them under my chin so I could actually smell them and then I waited and tried not to think about anything, just paid attention to what my body did and it seemed liked I involuntarily moved in their direction so I ate them. Now I could just be so hungry that I would have gone for anything but I'll see, :D I am getting much better at keeping my food/mood journal.

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Christina,

DON'T GIVE UP!!!

You are such a vital part of this community and I always enjoy reading your posts. Are you super sensitive to msg also or could this be something else. How long have you been gluten free? What other foods are you avoiding? Did you go through what you ate the last few days to see if anything was different? I can understand you being depressed but fight, fight, fight. We can all get through this with each others help. Please post each day and let us know how you are doing. We love you :wub: and are concerned about you and want you to feel better. Remember, no man is an island. In times like these our natural inclination is to run and hide but we've got to look up and stand and fight. I will look for your posts tomorrow and hope that together we can find out what caused your allergic reaction.

I've got a baby I've got to tend to. :P

Thanks Andrea,

Your post made me feel better.

I do feel a little bit better today, and hopefully I can get to feeling good a little bit each day.

I am super sensitive to a lot of foods and medications, and im trying to live with that and get this pain under control with my diet.

Its not going to stop me from being happy.. ill write more later,

its nice to know that others can understand what im going through, and im not alone.

I really realize I need other peoples help and cant do it all alone, and thats ok.

A--your baby is so cute, I want one~

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Christina,

I'm glad you're doing better today. :D:P I don't have a lot of allergies or sensitivities that a lot of the girls do on this thread, not to say that I won't at some point in my life, but I like everyone here. I am trying to avoid as much msg as possible but short of canning all my own tomatoes, can't do it with those. I would have to buy who knows how much to even can and then they are probably sprayed with auxi-gro anyway. :unsure:

My dilema now is baby food...make or buy. I'm leaning towards the make since some, if not all, have citric acid in them. The bananas do. I blended up a banana a few days ago and Seth didn't like it. The banana was ripe for us but probably needed to be an extra 2 days for him. Seems like making baby food would be time consuming but it's only for a few months right. :)

Which state are you in? I want to say California or New York. Am I even close? :P

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Christina,

I'm glad you're doing better today. :D:P I don't have a lot of allergies or sensitivities that a lot of the girls do on this thread, not to say that I won't at some point in my life, but I like everyone here. I am trying to avoid as much msg as possible but short of canning all my own tomatoes, can't do it with those. I would have to buy who knows how much to even can and then they are probably sprayed with auxi-gro anyway. :unsure:

My dilema now is baby food...make or buy. I'm leaning towards the make since some, if not all, have citric acid in them. The bananas do. I blended up a banana a few days ago and Seth didn't like it. The banana was ripe for us but probably needed to be an extra 2 days for him. Seems like making baby food would be time consuming but it's only for a few months right. :)

Which state are you in? I want to say California or New York. Am I even close? :P

Andrea-

I live alone so I have to make stuff in small portions intead of buying a mini cuisinart I bought a baby food processor for like 20 bucks- a good one. I use it to make spreads, chop nuts- Its amazing!!! I make seed pastes with vegatables and its so fast and easy. You can throw anything into it- I suggest you get one of these. There great for just fruits or veggees or what ever you want to throw in it.

Miamia

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Is it something in the air lately? Or is it a full moon? I've been very tired, draggy, and down this week myself--and got the runs yesterday out of nowhere. Grrrr. :ph34r:

Must be the weather....I am in Central CA where it's so hot and feels like a wet blanket is hanging over the Valley - dangerous air quality and kids can't go out to recess - but I think it's really hot and muggy all over the country, from what weather reports look like...

How sad is this, I'm going to eat dinner, clean the kitchen, throw in some laundry, take a cool shower and go to BED already and read magazines until I drift off. And it's 6:30 right now..... :blink:

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Its not going to stop me from being happy.. ill write more later,

christina; I admire your grit and determination , I know a bit of encouragement can really help when a person is down. I have done a lot of it and also gotten lots for myself. My hubby has been depressed for over 20yrs, suisidal for part of that before I could get him to right dr., now he is taking alzhiemer type medication/ diagnosis of dementia. the meds are keeping him mostly normal except energy is not very good.

this past winter he took care of me except i cooked for myself. he says I have to get better because i am going to have to take care of him again as i did last fall for several months, he also has prostate cancer, which his dr. has kept in check pretty well. I am sure things will get better for you, I have read on this forum where people have gotten much more optomistic when they were getting the gluten problem under control. has worked that way for me too, I was pretty down when I was my sickest just a few months ago.

rinne; thx for posting about that food trial, I had not eaten supper when I read that so held my sw. potatoes, salmon and cooked cauliflwr under my chin. after a bit my hands were drawn toward my chin, think it works that way too? any way I ate it and feel fine. but recently I ate raw cauliflwr & had tummy ache/ looseness next day. Any way think I will do food tests for awhile, will try most anything!!

rachel; have you tried sw. potatoes as well as yams? they are not in the same family of foods. just wondering, luck to you. :)

floridian; If your Dr. has changed your med from Celexa to Lexapro I would say you must be better, depending on dosages!!! In my opininon, living in the landlocked midwest, that being in a hurricane area would cause depression to settle in. my hubbies uncle was schizophrenic & his Mom was depressed for many years. Am sure we will all keep on keeping on and getting better. :rolleyes:;):o:):) evie

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Wow, I just got off the phone with the pharmacist who made the Ketotifen I'm taking. I called him to find out if the capsule contained gelatin. I've been taking the powder out of the capsule cuz I wasnt sure but I also wanted to know if this would affect the absorption since I'm mixing it in water.

The guy spent about half an hour talking to me about this drug and about gluten intolerance...we had a great conversation. I feel really hopeful right now and told him so. He told me its *real* hope....not false hope with the Ketotifen. He says its an amazing thing for healing the intestinal layer. It was originally for use in treating asthma and its derived from a plant that effectively treats asthma. Alot of studies have determined that it also is effective in healing the digestive tract.

I'm gonna try to remember as much of our conversation as I can so I can give you guys the lo-down. :)

He said that its been around for probably close to 30 years. He's known about it and followed research for the last 20 years. He was never able to get it here in the US though. He now has gotten approval from the FDA to compound it here in the US and he's been doing so for about 6 months now. He's been taking it himself for almost 3 months.

He said he had alot of allergies and the Ketotifen has helped him tremendously with the allergies and also sleep problems he was having. I told him I've been sick over 3 years and I'm not getting better with just the diet changes. He said I never will w/out healing the intestinal lining which is nearly impossible when there is constant histamine and inflammation preventing it from happening.

He said gluten intolerance is insidious and damage can occur over many years. For him the effects werent noticeable until he had 2 deaths in his family and alot of stress that occurred at the same time....it affected his health and he tested positive for gluten intolerance. Stress was the trigger for my health decline as well. He said he believes and studies have shown gluten intolerance to be far more widespread than most people would think. He said 1% of the population have severe form (Celiac), about 30% have mild Gluten Intolerance and up to 60% have it with no symptoms (sub-clinical). He said having mild symptoms or no symptoms at all does not mean these people will continue on the path of good health....it can be taken away at any time....as was the case for him and I.

He said once the damage has greatly affected the lining of the intestine (the mucus layer) people generally will not recover completely while on a gluten free diet. There is just too much irritation and inflammation caused by other factors at that point. Although we will feel better we will always have to watch what we eat and continue to have problems. The degree of this has alot to do with age, amount of stress/damage to the intestines, genetics, stress level, etc. He said the younger the person is the better chance they have in recovery.

Alot of this we already know but I'm just relaying everything we talked about. :)

He said the mucus layer has many functions and it is essential for good health. Without it we are extremely vulnerable to yeasts and parasites because the immune system is not up to par. He said many people will try to treat yeasts and parasites and they can successfully do so but without the healing of that mucus layer the yeasts will come right back after treatment is ceasesd. I told him I have yeast overgrowth and he said after 4-6 months on the Ketotifen I can treat the yeast more effectively because I'll of had enough healing by that time that the immune system will keep such things as yeasts and parasites in check.

He said that the Ketotifen excites him more than anything because of his own experience and from all he's seen and what studies have shown. He says he's made it for hundreds of people and noone has reported any severe side effects..drowsiness seems to be the only one people experience. I told him I'm not getting drowsy could it be because I was taking the drug out of its capsule? He said No...some people just dont get the drowsiness or they get it to a much smaller degree....either way its only while initially taking the drug. He said it is so well tolerated that even people who have taken handfuls of the pills attempting suicide did not harm themselves.

Another critical function of the mucus layer is enzyme production...we need those for digestion. We will continue to suffer digestive symptoms or allergies if we lack enzymes to break down the food for proper absorption.

On a side note: When I read about sensitivities to things such as MSG, salicylates, sulfites, etc....it is always mentioned that although noone knows why these sensitivities occur, it is believed that lack of necessary enzymes causes the problems. I'm wondering if my mucus layer is just so damaged that I'm simply not producing the enzymes that would normally break down msg and other substances. :unsure:

I'm gonna post this now and continue in case my possessed computer decides to kick me offline and I lose all that I've typed so far. I'm gonna be smarter than my computer. ;)

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Rachel--Thank you so much for remembering all of that and posting it. It was very interesting and made a lot of sense. I'm sure that my mucus layer is pretty well shot, after years of undiagnosed Celiac. That's why I feel better, but have to be *extremely* careful of how I eat. I know immediately if I step out of bounds with it--both with gluten and my other sensitivites. It's probably starting to work on you now--you just aren't getting the side effects you were expecting! That's so great :D Thanks again, Rachel.

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Ok...so he said he doesnt "hype up" any type of medication but he cant help but get excited when talking about the Ketotifen. I asked him if in his experience *everyone* sees positive results while taking it. His answer was Yes....and usually dramatic results can be seen. He said his case wasnt severe but the Ketotifen has done wonders for him thusfar. He expects to be on it a total of 6 months. For severe cases a year may be needed for total healing....I think I would probably fall into that catagory. He said I am young enough that I can heal faster but again genetics and other factors do weigh in.

He said to not expect noticeable improvement for at least a month and if damage is severe possibly 2 months. The purpose of the drug is to stop histamine reactions from taking place in the gut which then reduces inflammation and allows the mucus layer to successfully be replaced. Healing takes time. He said this is why its necessary to take the pill 1/2 hour before eating a meal. By then the drug has been absorbed and can effectively reduce reactions that occur while eating. He said histamine is released by mast cells when food is taken because the mucus layer is not intact so exposed mast cells are releasing histimine. Histamine can cause much inflammation.

He said its not necessary to take it before snacks because the drug stays active for up to 5 hours. He takes 4 x a day and since he's been on it 3 months now he no longer worries about taking it before meals because its been built up and he now has a constant supply in his bloodstream as long as he takes it 4x a day.

We talked about how his dad died of colon cancer and was found to be gluten intolerant before his death. He said he believes there is a direct link between gluten intolerance and colon cancer. I told him my grandmother died of colon cancer at 45 and I never got a chance to meet her. He said to die from it at such a young age suggests something genetic and yes, she was likely gluten intolerant especially since I'm having the problems I'm having now with my health. Genetics play a big part.

I truelly believe I may have remained "healthy" if not for the stress and poor diet I had....I believe down the road the gluten intolerance would have had a more direct and serious effect on my health and I likely would have ended up with cancer like my Grandma and may have even lived my life out w/out ever having heard of gluten. Maybe all this has been a blessing in disguise and I will live a much healthier, longer, happier life in the long run.

He said that gluten intolerance together with the American diet and all of its chemicals are a recipe for all of the health issues we are suffering in this country. By themselves these 2 things are enough to cause serious health problems so what happens when we put them together? Well here we all are. :(

We talked about how knowing about gluten intolerance we can see it in so many people around us that believe they are truelly healthy and that their small issues are "normal". He said he always looks for small red bumps on the elbows....he said lots of people have these and dont even know it.....he said its a tell-tale sign. He said he had them himself but they are gone now.

Back to the mucus layer.....he said with the intestines being the size of a tennis court and the mucus layer being so crucial you can imagine what happens when alot of that mucus layer is gone. He said its a huge and vital area that is compromised. The mucus layer also secretes antibodies to protect us from "baddies"....another reason why without it we are more vulnerable to parasites and other toxic things that we would normally fight off.

None of this is new to me since I've done plenty of research on leaky gut, candida, read Dangerous Grains, and my own doctor has discussed it with me. But somehow hearing it from someone whos been there and is on this medication and sees the results in the people he dispenses it to makes me feel a whole lot better.

The best part of our conversation is that he said this medication will work. Thats what it does for people like me with damage occurring from inflammation as a result of gluten intolerance. He said I will get better on this med.

:D:D:D:D:D:D

How cool is that???

Anyways, since I'll be here reporting my progress throughout....if it does actually do what he says it will....I think alot of readers here can benefit from knowing about this med. We'll see what happens by the end of summer. :)

Sorry for the extended post but I wanted to share everything since I'm so excited right now.

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Oh yeah...the capsules are gelatin-free. That was the whole reason I called him. :rolleyes:

He said he doesnt use gelatin at all since alot of people are sensitive to it.

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Oh yeah...the capsules are gelatin-free. That was the whole reason I called him. :rolleyes:

He said he doesnt use gelatin at all since alot of people are sensitive to it.

Ha! I was going to ask what the answer was to that question, lol.

Great information in that post, thanks so much for taking the time to write it for posterity here...I'm wondering if it would help with the environmental allergies...sounds like it would.

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:D:):lol:B):P:D

I'm glad you're so excited and hopeful! Thanks for sharing all of that info. That pharmacist sounds like he knows what he's doing! It's rare to find someone that knowledgeable.

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