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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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#31 AnnaChristine18

 
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Posted 09 May 2014 - 07:25 PM

There is no legal requirement for that statement.  

dont eat porcessed foods anyway i just said that...


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#32 AnnaChristine18

 
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Posted 09 May 2014 - 07:26 PM

I've said multipe times I eat a paleo deiet. NO processed foods.

 

In other words, the item can be processed in a shared facility even if the statement is not there.  You would need to look online or contact the company to find out for sure.  I really was not trying to say that you are stupid.  The thing about cross contamination is that some celiacs react to lower levels of cross contamination than others.  Here is a study with people that improved with a diet of whole unprocessed foods.  The flours that you use would be considered processed.  http://www.biomedcen...1471-230X/13/40


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#33 AnnaChristine18

 
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Posted 09 May 2014 - 07:30 PM

I am NOT getting cc!!!! How many times do I have to say it? Some of you are very helpful, thank you for your kind and supportive words. But to those of you who repeatedly insinuate that I'm eating something wrong or not reading labels and getting cross contaminated, how many times must I say my diet is all unprocessed, minus coconut flour which is literally just mashed up coconut shreds made in a gluten free dairy free facility.

I may have only found out I had Celiac Disease 5 months ago, but I know a ot more than you might think!!!!!

I feel like I'm talking to the doctors all over again. I have seen so many doctors and they all just said to either give it time or that I'm probably getting cross contaminated (Nope, blood test proved that wrong) or that oh i have ibs. I am so frustrated with hearing this over and over again!


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#34 AnnaChristine18

 
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Posted 09 May 2014 - 07:32 PM

I don't know if this helps but I just wanted to say that you're not alone when it comes to being sick enough to have to stay home and deal with being kept from doing the things you used to be able to do out in the world. I'm in the same boat and it is so frustrating.

 

Just know that this is a temporary phase of your recovery. You will bounce back and be better. It sounds like you are trying really hard to do the right things. Honestly it just takes time, even if you are doing the right things. I don't think it is helpful for anyone to have told you that you will be well in a matter of a few months. The length of time it takes is different for everyone.

 

If you can, try to make peace with the process of getting well, and try your best not to expect to see results in any particular time frame. Keeping stress to a minimum is as important as anything else you are doing toward feeling better. The more you can relax and go with it, the faster you will heal. I'm not suggesting it's easy to do that, but it will help.

 

You are making progress every day even if it doesn't seem like it. You will get through this and get back to being able to enjoy your life more again. Hang in there. It will happen!  :)

Thank you, I like hearing stuff like this(: ANd thank you for not jumping on the band wagon and telling me I'm getting cross contamined when I even got a blood test to prove that wrong.

It's just... I'm only 17 and these symptoms appeared so suddenly. My doctor even said that the healing process would be quick for me due to my age and the minial damage done to my intestines. Yet, I've been gluten free for over 4 months and I feel worse...
Do you know of any complications from Celiac Disease that could still be causing me suffering?


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#35 AnnaChristine18

 
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Posted 09 May 2014 - 07:35 PM

I started taking Digestive Advantage for Intensive Bowel Support. After a few days I started having pains in my stomach & bowel problems. I looked at the ingredients and found out it contains wheat.

Yea I looked at that one too until I read the ingrediants. I'm taking the DIgestive Advantage Constipation Formula which doesn't contain gluten or dairy. It's the only thing that keeps me away from laxatives /:


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#36 kareng

 
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Posted 09 May 2014 - 08:04 PM

dont eat porcessed foods anyway i just said that...

I didn't say you did. Well...actually you said you did but I just wanted to clarify that the statement isn't required by law.

Some of us have offered suggestions but you don't seem to want to hear them. Some of them had nothing to do with cc. I suggested you might want to track your symptoms and what you ate in case it was another food bothering you. We can't use magic and tell you what is going on with your guts, we have to start at the likely things and try to work with you to figure it out.

Good luck. I hope you feel better soon but I don't see how I can help you right now.
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#37 dilettantesteph

 
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Posted 10 May 2014 - 04:52 AM

I am sorry for offering suggestions that you think are not possible.  I have many years of experience with this condition and apparant cc where I didn't think it was possible.  For your information, a negative blood test does not prove absolutely that there is no cc.  Some celiacs have a negative blood test while on a full gluten diet.  http://www.curecelia...positive-biopsy


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#38 jiggles

 
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Posted 10 May 2014 - 08:41 AM

I would cut out ALL factory produced foods , and that includes the flours you are using ,
Just stick to "whole foods " of one ingredient , which I see you are doing already ,
but your nut flours are factory produced ,

and dilitantesteph is right about low levels of gluten being present in factory produced flour ,
as they are allowed 20 parts per million which is still classed as Gluten free ,
and in the beginning some of us can be sensitive to these low factory levels of gluten
until we have healed a bit more ,

a lot of us on here have felt so sick and poorly just like you in the beginning , me included
and we know It's not nice to feel so sick :(

it's only by trial that we discover our own " safe foods " which may be different for each of us ,

for me it is sweet potatoes , steamed cod , and lots of water ,

In the beginning when our systems rumble and bloat to let us know we have eaten something too harsh, or too hard to digest ,
we then go back to our " safe foods" and remain on them until we feel better

and whilst eating ONLY our "safe foods"
we introduce those other foods one by one, until we find the food which offended our systems

then over time when more healing has taken place many of us can look forward to getting back most of those offending foods that were far too harsh for us in the beginning ,

for me those offending foods were .... eggs which gave terrible gas pain and bloating , any type of nuts,
any type of flours, Dairy ,
certain fruits , certain veggies , hot spices and peppers, certain vinegars ,

I hardly ever drink , but any type of alcohol or wine was out in the beginning too,
plus a few more things I may have forgotten ,

so you can see it's a process of elimination for a lot of us ,

Hope that helped, and I hope that made sense ,

Hope you find your safe foods soon and start to feel better too :)

Jiggles x x
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#39 FruitEnthusiast

 
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Posted 10 May 2014 - 09:42 PM

It's just... I'm only 17 and these symptoms appeared so suddenly. My doctor even said that the healing process would be quick for me due to my age and the minial damage done to my intestines. Yet, I've been gluten free for over 4 months and I feel worse...
Do you know of any complications from Celiac Disease that could still be causing me suffering?

 

I can't imagine dealing with this when I was 17, it must be so hard. It's true healing time is supposed to be shorter the younger you are. I have usually heard 6 months is the minimum time to feel better. I think it's really too soon to be concerned about any other complications you might have. What you are experiencing is very normal at this point.

 

It is very common to have food sensitivities other than gluten after going gluten free. I couldn't tolerate any grains at all, for example. I stuck to whole foods, nothing processed - the more you can do that the faster you'll heal. You get used to it. Over time you find out which foods you can tolerate and which ones you can't. Figuring that out is what takes time more than anything.

 

I tried "gluten-free" foods but all of them made me feel bad. You do have to be so careful trying those foods, because some will claim to be gluten-free, but not all of them are.

 

I'm not sure if you're keeping a food journal - writing down what you eat and how it affects you. It sounds hard to do, but it's the best way to figure out the right foods for you to eat. I know this whole process is overwhelming, so just try to make positive changes as you are able to. It will pay off.

 

There are a lot of people on this site who have dealt with these things longer than I have. They've been through it all, and any suggestions they make are to try and spare you from going through what they did. No one is trying to judge you, I promise. Everyone here is genuinely concerned about you and wants to help.

 

I hope your family is supportive and you have some friends that understand. There is a section on this site that's only for young people like yourself. It might make you feel better to talk with other young people so you know you are not alone.

 

Male sure you take a break from worrying about all this stuff sometimes, and take time to do some fun things you enjoy :)


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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
 


#40 Questore

 
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Posted 11 May 2014 - 01:10 AM

Thank you, I like hearing stuff like this(: ANd thank you for not jumping on the band wagon and telling me I'm getting cross contamined when I even got a blood test to prove that wrong.

It's just... I'm only 17 and these symptoms appeared so suddenly. My doctor even said that the healing process would be quick for me due to my age and the minial damage done to my intestines. Yet, I've been gluten free for over 4 months and I feel worse...
Do you know of any complications from Celiac Disease that could still be causing me suffering?

Everything related to any autoimmune condition will get you new flare ups of problems that come out of no-where.  They aren't complications, in the meaning of something getting worse.  It's a good deal more likely that other parts of your body were suffering for a long time from lack of good nutrients and kind treatment to your body.

 

It rather depends on what syptoms you have suddenly showing up, in combination with any other symptoms you already had; the way the stress is hitting you (and we all beat ourselves up so much during the anger and grief of finding out something is really wrong with us, because down deep we are blaming ourselves for what happened, even though we may have done nothing to make it happen.) It's about knowing if you have been sleeping, and how long, who you argued with, and what about, what you ate, and how you felt; and so forth.

 

In a couple of years, you will have a track record to look back on, and see all the problems, and how they act on each other, and what you can do, if anything, to make it better.

 

But at 17 you don't want to hear that it will take a long time to figure out your version of the disease, and what other surpises your body has in store for you during the healing time.

 

I am not a diagnosed celiac disease, but I have everything that seems to resemble it, or lead to it, or from it.  At 19, all of a sudden I started vomiting, and couldn't stop.  6 days in the hospital, and fluids, and a pill that helped control excess stomach acid helped, as did the valium...but I could keep nothing much down, not even the pills, and had constant dry heaves and diarrhea until there was nothing in me.  And then even water would make me sick.  I lived on sips of Diet Pepsi, until I could keep some mashed potatoes down.  It was two years before I could eat much of anything...potatoes, oatmeal, some crackers...and no one even mention celiac disease...no one had heard of a gluten free diet in 1974...no one ever seemed toknow anything for most of us older people.  At 59, they still don't really know what's going on with me, and I keep reading, and trying to see what new thing fits my list of symptoms, and try something new.

 

For me, going gluten free...this is the next thing to try...and having lived without gluten before, it's no hardship in comparison to pain and nausea.

 

What are your symptoms?  What happens first, and what next?  Is anything the same from day to day?  Because it's not just what you eat...it's what you feel, and how that makes your body put out a ton of chemicals to mess with you further...being lonely, feeling depressed, feeling like your life is ruined, and hating it.

 

There is a lot to control in your life that has nothing to do with your kitchen.  Even if you do gluten free perfectly, your mind is going to have just as much an effect on you as celiac disease, as are the people around you.  Everything you lose is going to have a physical effect on you...and every patch of boredom, of anger, of grief will stir your body up...and make you feel worse.

 

You need to start listing everything...a journal, not of what you eat alone, although that helps, but how you felt, and what you thought, because in just a few more months, you might have enough information to see a pattern of something.

 

And at your age, a grief counselor might be important.  You have lost everything that you know, and expected, and desired. The old you died, and the new you is a complete mystery except for the memories of being 'normal'.  Fortunately, no one really is normal, so you don't have to worry about that, but how to do your new life takes a new set of rules, and they are not all in a diet book.

 

You will have to design a new life, and a new you around what is happening, and that's a bit overwhelming for any of us.  I didn't know I had a life long condition, nor that there was help somewhere.  No one has ever really known what I, or many others here, ever had wrong with us, until it was screamed into there faces with a ton of proof, and most of us had more of a handle on life than you have just now. You are really young, and young bodies heal.  My niece, at 35, was symptom free from celiac disease in about a year. 

 

I still continually try new ideas...something new pops up every few years, and sometimes it helps.  Going gluten free will help me...I know that.  But it won't give me back the 40 years of trying to find out what was wrong, or the time I spent grieving over it, hating myself, and hating my life. 

 

You know what is wrong, and what to do.  You just are not really aware yet that you are going to have to keep doing this year after year, until you get it right.  You have to begin to control how you thing, and what you feel...there are techniques that you can learn...thought replacement, to calm your mind, and get a better attitude, and then a better life.

 

A grief counselor can help you deal with all the reality you got shoved into your face, and help you cope with how impossible it all seems.  But it isn't impossible...just hard.


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#41 AnnaChristine18

 
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Posted 14 May 2014 - 05:57 PM

I can't imagine dealing with this when I was 17, it must be so hard. It's true healing time is supposed to be shorter the younger you are. I have usually heard 6 months is the minimum time to feel better. I think it's really too soon to be concerned about any other complications you might have. What you are experiencing is very normal at this point.

 

It is very common to have food sensitivities other than gluten after going gluten free. I couldn't tolerate any grains at all, for example. I stuck to whole foods, nothing processed - the more you can do that the faster you'll heal. You get used to it. Over time you find out which foods you can tolerate and which ones you can't. Figuring that out is what takes time more than anything.

 

I tried "gluten-free" foods but all of them made me feel bad. You do have to be so careful trying those foods, because some will claim to be gluten-free, but not all of them are.

 

I'm not sure if you're keeping a food journal - writing down what you eat and how it affects you. It sounds hard to do, but it's the best way to figure out the right foods for you to eat. I know this whole process is overwhelming, so just try to make positive changes as you are able to. It will pay off.

 

There are a lot of people on this site who have dealt with these things longer than I have. They've been through it all, and any suggestions they make are to try and spare you from going through what they did. No one is trying to judge you, I promise. Everyone here is genuinely concerned about you and wants to help.

 

I hope your family is supportive and you have some friends that understand. There is a section on this site that's only for young people like yourself. It might make you feel better to talk with other young people so you know you are not alone.

 

Male sure you take a break from worrying about all this stuff sometimes, and take time to do some fun things you enjoy :)

I do keep a food journal, and I do avoid "gluten-free" foods, I only eat veggies, fruit, meat, and nuts. And thats all. No grains or sugar or dairy or processed food asside from coconut flour (certified gluten free)

I've heard 6 months is the minimum time for healing, although most people tend to start feeling better in some ways with ANY little imporvement over a month or so. I don't feel any different! And it's been almost 5 months! I look like i'm pregnant my stomach is so huge and bloated, i never stop crying. I woul do absolutely anything to stop this hell... it hurts so bad and it never stops! i had to quit school, quit my job, i dont go out, i dont do anything. Even my GI says she doesnt know what could be wrong, she reffered me to the Celaic Center in nyc so im going there in 2 weeks. Hopefully i'll get some answers...


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#42 FruitEnthusiast

 
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Posted 15 May 2014 - 09:24 PM

I'm sorry you're feeling so uncomfortable :( I don't know anything about the bloating, that isn't one of my symptoms, but it sounds miserable. The Celiac Center sounds like a good plan. Many GI's don't have enough experience with the problems we face to help that much. Mine is like that.

 

I'm also not able to work right now until I feel better, or go out, so I understand completely. Sometimes I feel like I'm going to lose my mind, then I'll figure out a piece of the puzzle with my issues and it helps me keep going. It's one of those two steps forward, one step back sort of things. I am figuring it out little by little. There is always an answer! I know I'll get there and I know you will too!

 

Remember you're still the same person, you're just sick right now. Your old life will be back, and you'll feel like yourself again, you'll be happy. It won't always be this bad, it's just a really hard stage that you're in, and it is temporary. it will pass. Just keep putting one foot in front of the other and you'll find your way!


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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
 


#43 jiggles

 
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Posted 16 May 2014 - 05:05 AM

Hi, it's great news that your doctor is sending you to the Celiac centre ,
it's really good to feel there is more help out there ,

there is a very good post on here about starting to feel better ,

sorry I can't remember who the OP was ....

It starts with waking up one day feeling ok, and you notice that you have had a good day ,
then you hope you will have another good day , and one day it dawns on you that you have had two or more good days in a row ,

and you suddenly realise that you are having more good days than bad
and eventually the good days will out number the bad days ,

and you will get better too AnnaChristine
and as you get better the anxiety that accompanies this illness will go away allowing your confidence to grow back and you will feel like your old self again ,

I found it so scary when I didn't know my own body anymore or how to help fix it,
I felt broken ,

I too had those new food intolerances that can show up soon after starting the gluten free diet,
I found these hard going , as they can produce similar symptoms to gluten ,
but once you recognise the offending foods and gain control by cutting those foods out until you heal ,
it starts to get better ,

and after two years of healing I am finding I can now tolerate most of those foods again , and a few more factory produced treats too ,

We are so lucky to have lots of lovely people on this site to help us through all of this ,
and to help us to stay well too ,

I found this board a God send , I am so grateful for it , I don't know what I would have done without it ,

so thank you all once again x x

AnnaChristine , Please let us know how you are doing, and how you get on at the Celiac centre ,
Sending you big hugs :)

Jiggles x x
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#44 FruitEnthusiast

 
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Posted 16 May 2014 - 02:43 PM

Yes, that's such an important point - the anxiety is a symptom or side effect that comes with this. That has been maybe the hardest part of all for me to cope with. I don't naturally have anxiety, but I've had it really bad off and on while dealing with this. I had really bad irritability too in the beginning and that's passed now. I just wasn't myself at the start, but that gets better. Hang in there :)


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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
 


#45 AnnaChristine18

 
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Posted 21 May 2014 - 05:25 PM

Hi, it's great news that your doctor is sending you to the Celiac centre ,
it's really good to feel there is more help out there ,

there is a very good post on here about starting to feel better ,

sorry I can't remember who the OP was ....

It starts with waking up one day feeling ok, and you notice that you have had a good day ,
then you hope you will have another good day , and one day it dawns on you that you have had two or more good days in a row ,

and you suddenly realise that you are having more good days than bad
and eventually the good days will out number the bad days ,

and you will get better too AnnaChristine
and as you get better the anxiety that accompanies this illness will go away allowing your confidence to grow back and you will feel like your old self again ,

I found it so scary when I didn't know my own body anymore or how to help fix it,
I felt broken ,

I too had those new food intolerances that can show up soon after starting the gluten free diet,
I found these hard going , as they can produce similar symptoms to gluten ,
but once you recognise the offending foods and gain control by cutting those foods out until you heal ,
it starts to get better ,

and after two years of healing I am finding I can now tolerate most of those foods again , and a few more factory produced treats too ,

We are so lucky to have lots of lovely people on this site to help us through all of this ,
and to help us to stay well too ,

I found this board a God send , I am so grateful for it , I don't know what I would have done without it ,

so thank you all once again x x

AnnaChristine , Please let us know how you are doing, and how you get on at the Celiac centre ,
Sending you big hugs :)

Jiggles x x

This was beautiful, thank you :') I love all the support I get from this website!!

I just started taking a supplement I heard about from a website called The Celiac Diva, for healing leaky gut called "G.I. Revive" that has (this is a long list):

L-Glutamine, glucosamine, citris pectin, licorice root, aloe vera, slippery elm, mucin, marshmallow root, chamomile, okra extract, cat's claw, prune powder, and zinc carnosine. For $65 this better do something. I'm still waiting for my Celiac Center appointment. I want to ask the doctor about getting a test for food intolerances. Either the IGe or IgG or something? I don't know much about it, but elimination diets don't do anything for me because it's been 5 months I've been doing it and I still seem to react to everything.

Can anybody point out anything else it could be that's wrong? After 5 months on a strict gluten free, grain free, dairy free diet I should be seeing SOME results but I haven't even imporved in the least bit. In fact I'm getting worse.

Does anyone have ideas?

Other than bacterial/parasitic infections of the intestines, pancreatic insufficencies, other food intolerances, or SIBO?

And does anyone know anything about "leaky gut" and what to do about it?


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