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Newly Diagnosed with Questions


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168 replies to this topic

#1 L.J.

 
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Posted 06 October 2012 - 04:58 PM

This is my third attempt at posting here. My first one just sounded pathetic. My second one soundeded lame. I will see if this post can say what I am wanting to say. :)

I am highly allergic to gluten and nuts. I instantly went into Denial and ate everything I could with gluten and peanuts in it. This was a very bad idea. I reacted strongly and got very sick in multiple ways. The positive note is that I quickly accepted that I cannot eat gluten or nuts! I also found that I cannot eat chocolate :(

I have been on Prednasone for two months now. I am beginning to wean off slowly. In about another month I should be off of it. I really do not want to be on the Prednasone, but being off scares me too. I know this makes no sense, but it is true.

I also get afraid to eat. Is this normal? (I do not have an "eating disorder")

It just seems like I react to foods that I thought were OK. My doctor mentioned that I may be reacting to "fermentation". I really do not know what that means!?!? He wants to test me for that when I am off the Prednasone.

I cried after my first attempt to post--It is the first time I have cried since finding this information out. I find this to be pathetic too. Especially when I see all of the positive posts and the foods that I *can* eat! Perhaps this is part of the process of figuring this all out, yes?

Anyway, this is a great site--and I am sure that I will be utilizing the site often! Thanks to all who have shared there experiences and found foods that we can eat!
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#2 GFinDC

 
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Posted 07 October 2012 - 08:43 AM

Hi LJ,

Welcome to the forum! You might get more responses if you start a new thread. Anyhow, prednisone is a serious drug. Weaning off it would be a good idea. Celiac often causes symptoms for us after going gluten-free. Sometimes they can go on for months or years. But it is possible to get better and heal your gut if you follow the suggestions in the newbie thread and keep away from gluten. Healing can take time. Secondary food intolerances can be an issue also. Stick around and read and ask questions. We are glad to help! :D

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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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

#3 L.J.

 
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Posted 07 October 2012 - 09:06 AM

Thanks GFinDC for your reply!

The information links are a good place for me to start-and I will start reading up on this! I will also start with your advice regarding the first 6 months of gluten free eating!

Is it normal to be "afraid to eat"? I have lost more weight--so I know I need to eat the right foods! Your suggestions are helpful and I will use them! Thank you! :rolleyes:
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#4 IrishHeart

 
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Posted 07 October 2012 - 10:16 AM

Is it normal to be "afraid to eat"? I have lost more weight--so I know I need to eat the right foods! Your suggestions are helpful and I will use them! Thank you! :rolleyes:



Hon, do not be afraid to eat. okay. Your body needs nourishment.

Make a shopping list of the foods you know are okay for you.

Gradually, you can add more foods back in. Take it slowly, but by all means, EAT.

Welcome to the forum.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 L.J.

 
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Posted 07 October 2012 - 12:21 PM

Hon, do not be afraid to eat. okay. Your body needs nourishment.

Make a shopping list of the foods you know are okay for you.

Gradually, you can add more foods back in. Take it slowly, but by all means, EAT.

Welcome to the forum.


Thank you Irish Heart!

After reading through the forum here, I definitely have seen some foods I need and can eat! It was not until I wrote last night, that I realized how "fearful" I had become to eat food. :( A body can not survive long without eating (or as we all know so well, if we eat the "wrong" foods)! I am beginning to learn what I can and can *not* eat!

I thank everyone for their support and encouragement! This is such an uplifting and informative site! :) I am so glad I found it!
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#6 IrishHeart

 
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Posted 07 October 2012 - 01:10 PM

Thank you Irish Heart!

After reading through the forum here, I definitely have seen some foods I need and can eat! It was not until I wrote last night, that I realized how "fearful" I had become to eat food. :( A body can not survive long without eating (or as we all know so well, if we eat the "wrong" foods)! I am beginning to learn what I can and can *not* eat!

I thank everyone for their support and encouragement! This is such an uplifting and informative site! :) I am so glad I found it!



I felt the same way as a "newbie" :) . When I finally got affirmation that I did, indeed, have celiac, I was deathly ill. I could not swallow anything without intense burning in my mouth...and all the way down my GI tract to my rectum.

I did not want to eat either. Who would want to? We either throw it up or lose it in the loo....so, I would try small amounts of food like baked chicken, brown rice, green beans....berries, nuts, that sort of thing. In time, they agreed with me. :)

As my gut healed, my appetite increased and my fear of having symptoms (not really a fear of food exactly) decreased.

I did avoid dairy, soy, citrus, alcohol, coffee and other gut irritants for almost a year. But this was MY experience and others heal at different rates.

You're going to be okay! ;)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 GFinDC

 
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Posted 08 October 2012 - 09:16 AM

Thanks GFinDC for your reply!

The information links are a good place for me to start-and I will start reading up on this! I will also start with your advice regarding the first 6 months of gluten free eating!

Is it normal to be "afraid to eat"? I have lost more weight--so I know I need to eat the right foods! Your suggestions are helpful and I will use them! Thank you! :rolleyes:


You are welcome L.J, I hope you feel better soon. I don't know if it is normal or not to be afraid to eat, I just know I felt that way sometimes myself. When it all comes back out anyway, and somewhat explosively, it can seem like a waste of time. It might help to eat small quantities at a time, and keep water handy to wash things down. It could take a while for your digestion to settle down, so being easy on it is a good thing. Trying some Betaine HCL once in a while may hep too. It augments the stomach acid and can help with digestion.
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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

#8 L.J.

 
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Posted 08 October 2012 - 02:28 PM

Irish Heart & GFinDC...

Thank you for the encouraging (and confirming words). My mouth hurt so bad that it peeled-with the sores in the last week, and yes, clear through the throat, stomach and into the loo! It is an accurate statement to be "afraid of the symptoms"--not the food! A great turnaround on my "mindframe on food".

I react extremely quickly to foods--getting what I am finding to be common as "the DH"??An extreme rash that covers my body. I actually had to wear gloves to cover what were "blisters" all over my hands (tops & palms) as well as arms, legs, etc. Almost-- where "weren't" they? :unsure:

The milk does appear to be affecting me more than I thought--one cheese rice cake--and within 30 minutes, I had three new sores. (This is why I get fearful of going off the Prednasone--as nasty as that medicine is. It helps the intense rashes I get!).

I am not familiar with Betaine HCL -- Could you say more about it? What area do I find it in? Specifically, what is it?

I get D., and it burns everywhere. Between the sore mouth, sores on hands/body, and sore body parts... :( I try to eat "hard boiled eggs, gluten free bread, gluten free lunch meat, and raw vegs, fruits, etc." I try to branch out--then get "burned". Literally and figuratively :lol:

A long post--Thank you again. I am trying to eat--and the cheese rice cakes (that I ate today) are out the door as of today. Thanks for the encouragement, support and ideas. I really need them! The bad times are still with me, but fortunately I am still "fighting the dragon"--to quote Irish Heart's motto (right?) !!! P.S. GFinDC-- For some reason I find great comfort in your farting motto as well! :D:)
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#9 squirmingitch

 
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Posted 08 October 2012 - 05:29 PM

Okay L.J. tell us more about your rash please. You are getting little water blisters? What do they do? Do they itch?
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#10 L.J.

 
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Posted 08 October 2012 - 08:11 PM

Okay L.J. tell us more about your rash please. You are getting little water blisters? What do they do? Do they itch?


The blisters start out as an itchy "sore"--then quickly turn into full blown blisters. Some small, and some get as big as a quarter on the palms of my hands. They covered my hands in multiple masses of water blisters and then blended into a huge mass of painful, horrendous blisters that took weeks to go away and covered all of my hands. They were on the palms of my hands, the tops, and covered my fingers on all sides. Proceeded up my arms in patches, loving to hang around my elbows and arms--both forearms and upper arms inside and under my armpits, on to my back, side, and legs. On my legs, they were more like oozy, itchy sores. At night, I would scratch (without meaning to) until they bled. Then I had sores that were oozy and a bloody mess. They had no mercy--as they went to private places as well that were sensitive from the d. that would come quickly and surprisingly.

If I "catch the sores in time", I put a cream my doctor gave me called Fluocinonide, .05%. I was told to put it on whenever the sore began to try to avoid the blisters. Once I was on the Prednasone and put the cream on, it took three weeks for them to "heal most of the way". I still wear white cotton gloves to bed every night to keep the cream on the new outbreaks that seem to develop daily. It has been two months plus. I am weaning off Prednasone now for the next three weeks up to this date.

The sores in my mouth covered my lips, inside all of my mouth, tongue and throat. I found an oral cleanser called Gly-Oxide (Carbamide Peroxide 10%) that helped ease the mouth pain. It actually helped to heal the sores quicker than I thought. Some relief quickly! :) Then the inside of my mouth kind of peeled off in layers. If I washed my teeth, some of the gunk from the sores seemed to peel off and I would spit it out--seeing the leftover skin from my mouth. (This seems too graphic for this forum, but...it helps to explain it) :)

Presently, the sores in my mouth are better. I still have some irritations in my mouth that comes and goes. Right now, there is some on the roof of my mouth. But they are not nearly as bad as they were!

I called this time "hell". (Too much to say that word?) I thought I was goin' to die from pain, itching, sores, blisters, diarrea, sensitive skin in personal areas, etc.

I thank you for asking though. No one has really asked me how it actually looked, or how it felt for me so specifically and directly. My doctor did not see the sores in my mouth when they "exploded". I had them mostly cleared up Have you heard of these types of problems before?
I have not heard such specific issues about blisters, sores, on type of the stomach uch all together before. I'm a Newbie... :) But I am learning to eat again
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#11 GFinDC

 
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Posted 09 October 2012 - 04:47 AM

Hi LJ,

Squirmy has all the dope on DH ( dermatits herpetiformis), the skin rash version of celiac disease. So stick around for her reply. Has your doctor tested you for DH?

Betaine HCL is a pill that you take to aid digestion. It turns to stomach acid when it dissolves in the stomach. Sometimes people have low stomach acid and that can lead to poor digestion and increased numbers of bad bacteria in the gut. Stomach acid production decreases as we age same as hormones (thyroid etc) do. H.Pylori also decreases stomach acid production.

Don't worry about TMI, we have all had problems of one sort or another, so we are used to those issues. Squirmy will probably tell you about avoiding iodine for DH when it flares, and how to get tested properly. You might want to look at the DH section of the forum for threads on it.

LOL on the motto, it may be the neighbors wouldn't agree eh? :D
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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

#12 L.J.

 
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Posted 09 October 2012 - 07:09 AM

Hi GFin, (May I call you that--I know it is gluten-free probably, but I think of you as GFin :D:) ?)
I will check out the DH format. I had a blood test--but the doctor said he had questions about the lab because the results were poor. I had already tested out the options of food--so I knew that gluten & nuts were a problem.

I will look into the Betaine HCL. I thought I had high stomach acid--but I really have no idea. I did try Probiotics on Saturday after seeing that it helps. It ended up causing me 6 hours of diarrea. I was told that Probiotics are not supposed to do this--and that my body was "in crisis". (I kind of figured that one out by now) :) So, I am hesitant to try the Betaine on a week day--I cannot have diarrea and instruct. (It tends to interrupt the lectures :) I guess I need to ask what TMI is??? Is that graphic language that describes the symptoms, etc.?

After hearing about the Probiotics, should I still try the Betaine or wait until the weekend? Just wondering about your thoughts on this?

I thank you for responding as always! And I am always thankful for a fart--it means no diarrea! just the stomach working! :) (The neighbors will have to live with it!)

My doctor who saw the blisters just said get tested immediately--or I will have another "episode" of this...:( That I would prefer to avoid! I was treated like a leper at work--and no one even knew about the "runs to the toily"... (literally) Thanks for your encouragement and support.

Could I ask what you started eating at first? The more ideas on that the better. I would like to try some new foods that have been safe for others--better than exploring new foods and having reactions, yes?

Thanks again, and I so appreciate your feedback - as well as other's! I find it comforting. That is the word that keeps coming to my mind when I think of this forum.




Hi LJ,

Squirmy has all the dope on DH ( dermatits herpetiformis), the skin rash version of celiac disease. So stick around for her reply. Has your doctor tested you for DH?

Betaine HCL is a pill that you take to aid digestion. It turns to stomach acid when it dissolves in the stomach. Sometimes people have low stomach acid and that can lead to poor digestion and increased numbers of bad bacteria in the gut. Stomach acid production decreases as we age same as hormones (thyroid etc) do. H.Pylori also decreases stomach acid production.

Don't worry about TMI, we have all had problems of one sort or another, so we are used to those issues. Squirmy will probably tell you about avoiding iodine for DH when it flares, and how to get tested properly. You might want to look at the DH section of the forum for threads on it.

LOL on the motto, it may be the neighbors wouldn't agree eh? :D


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#13 squirmingitch

 
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Posted 09 October 2012 - 10:08 AM

My gosh L.J.! I don't quite know what to say about your blisters! It's certainly the very, very worst I have heard of. However, I have seen some photos on the internet of dh that rocked me backwards in my seat with the intensity of them & I always think, "If that were me, I would not be able to bear it & would probably kill myself." Just being honest here. I have had & still am having a devil of a time with dh & I can't imagine what you are going through. You need some major, big time hugs!!!!!!!!!!!!!!!!!!!! (((((((((L.J.)))))))))))))
I hardly know where to begin. Ask G.F. if he's ever seen me speechless. NO!
You need to get a dh biopsy.

http://apps.elsevier...593pdf001_2.pdf

http://www.arupconsu...mis.html#tabs=3

http://www.csaceliac...rpetiformis.jsp

http://www.celiac.ni...Dermatitis.aspx

You need to go low iodine right now & see if it helps tone down the lesions. Iodine is medically known to make dh go nuts! Most of us with dh have to limit our iodine intake at least temporarily. A few have not found that to be the case. But it's worth a shot for you. A link for low iodine diet. You will of course have to minus the gluten from the diet. But it will tell you which foods you need to avoid to go low iodine.
http://www.thyca.org/rai.htm#diet

Your'e going to need some info. I can't find the bookmarks for at the moment but I'll be working on it.
In the meantime here are some links for you to read:

Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/


Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/


Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195


DH Photobank:

http://www.celiac.co...-dh-photo-bank/

I'll be back when I can.

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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#14 L.J.

 
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Posted 09 October 2012 - 01:07 PM

Hi Squirmy!
Thanks for the hugs! You are right, I needed some! :)

Also, thank you for the info on the iodine free diet. When I read the list, I found out that I regularly use sea salt (although since eating gluten free-have found that the taste of salt is too strong--so I have not been eating salt at all)! I have been living on eggs, legumes, (kidney, black, pinto beans) and have been eating shrimp once to twice per week. It seemed healthy and full of protein. I have also been eating tofu twice a week--Including these last few days. :( And, until yesterday afternoon--I have been eating milk--especially yogurt & cheese. All on the no-eat list :( But, I found the list of foods to eat--and will focus on those minus the gluten.

Wow. If Iodine makes the DH worse, then no wonder I am having daily outbreaks! It surprises me regarding the iodine.

I also will incorporate the new information into my eating...Think fresh veg's & fruits and homecooked healthy protein, yes??? LOL

I thank you so much for your help. My goal is to try to not have any outbreaks for a period of 3 days. I would know what I was doing was helping...make that 2 days! :)

I trust you are able to speak fluently again! I do not want to take your beautiful words of wisdom away! :)
P.S. I appreciate your honesty! I happen to value it highly in our world! :)

Thank you again!
L.J.


My gosh L.J.! I don't quite know what to say about your blisters! It's certainly the very, very worst I have heard of. However, I have seen some photos on the internet of dh that rocked me backwards in my seat with the intensity of them & I always think, "If that were me, I would not be able to bear it & would probably kill myself." Just being honest here. I have had & still am having a devil of a time with dh & I can't imagine what you are going through. You need some major, big time hugs!!!!!!!!!!!!!!!!!!!! (((((((((L.J.)))))))))))))
I hardly know where to begin. Ask G.F. if he's ever seen me speechless. NO!
You need to get a dh biopsy.

http://apps.elsevier...593pdf001_2.pdf

http://www.arupconsu...mis.html#tabs=3

http://www.csaceliac...rpetiformis.jsp

http://www.celiac.ni...Dermatitis.aspx

You need to go low iodine right now & see if it helps tone down the lesions. Iodine is medically known to make dh go nuts! Most of us with dh have to limit our iodine intake at least temporarily. A few have not found that to be the case. But it's worth a shot for you. A link for low iodine diet. You will of course have to minus the gluten from the diet. But it will tell you which foods you need to avoid to go low iodine.
http://www.thyca.org/rai.htm#diet

Your'e going to need some info. I can't find the bookmarks for at the moment but I'll be working on it.
In the meantime here are some links for you to read:

Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/


Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/


Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195


DH Photobank:

http://www.celiac.co...-dh-photo-bank/

I'll be back when I can.


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#15 shadowicewolf

 
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Posted 09 October 2012 - 01:49 PM

I understand the feeling. I got to the point where i too was afraid to eat anything (still kinda there >.> wish i could just stop it but nooooo). My doctors know about it ("Just try to eat something") and slowly (very slowly) i've been adding things back into my diet.
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