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I Had Hoped To Never Return To This Place


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106 replies to this topic

#16 psawyer

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Posted 01 January 2012 - 07:57 PM

Also, were any of the biopsies taken of your small intestine? Or just your duodenum?

The duodenum IS the uppermost part of the small intestine.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#17 Sarah P

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Posted 01 January 2012 - 08:23 PM

I think it's good you are voicing your anger and utter hatred of this diet. It's ok to be mad and it's ok to make bad choices. Someone once told me, "it's okay to wallow in the mud pit,everyone does, but it's not okay to stay there. God wants you to learn to climb out." We each deal with what life gives us differently. I know a lot of people on this sight are really mentally healthy and strong, but you don't have to be. I know I'm not. You have a lot on your plate, way more than most of us, and you will figure out a way to push through.

I can sympathize with your feelings about being gluten free. Being Gluten Free has not made me feel better and no one can tell me what is going on. It's had to feel like this is the best choice when I still feel awful and hurt all the time.

I have found a lot of wonderful Gluten free food but, I hate this diet and I feel like people are constantly not considering me and what I have to live with. Now I know it's not their job to go out of thier way to make sure the pot luck is gluten free, but if I had a sever peanut allergy and someone invited me I bet there wouldn't be any peanuts!!!
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Sarah Pogozelski~ Independent Consultant~ Arbonne International
1 doctor says Celiac, 1 says No Celiac but recommended a Gluten Free Diet. New doctor is going to try to figure it out for me. This is a strange life but the food is getting better!

#18 rosetapper23

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Posted 01 January 2012 - 08:23 PM

Oops! I guess I've read a lot of literature indicating that it's the jejunum that's usually involved. So much for my biology! But, still, only two biopsies....

Since her all of her bloodwork was negative except for one that was mildly positive, I'm still leaning towards the possibility that she does not have celiac. The only way she can find out is to eat gluten again and demand an endoscopy with many more samples. She could also have her bloodwork re-done at that time. I personally wouldn't wish to face a lifetime of eating gluten free if I really didn't have a medical need to do so.
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#19 mushroom

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Posted 01 January 2012 - 08:35 PM

Suzanna, no one can make you do anything you choose not to do. You have all the facts, you are a grown woman, you can make your own decisions about what is important to you. Many people have taken the choice of live fast, die young, and leave a good-looking corpse. You can reject the chains and the boundaries and do what makes you happy in the now. Although I sense that your presence back here is because you are not entirely happy with this decision.

In this sense I am inclined to agree with rosetapper -- eat your fill of gluten for six months, repeat the endoscopy, and then make your decision as to whether living life is worth giving up gluten for, if seeing your children grow up is worth giving up gluten for. No guarantees (just as there aren't for any of us) but just the chance of doing so. Liver transplants take place successfully all the time; people successfully give up gluten (and longing for it) all the time. It is possible, but you obviously need some help in working you way through this. But you don't have to do it for another six months when you can confirm or discount your celiac diagnosis, and maybe only have to deal with your liver, or maybe have to deal with the whole thing as you are now. But at least you would know for sure what you are dealing with.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#20 Skylark

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Posted 01 January 2012 - 08:42 PM

I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the shitty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.

But the only way to live is to face your fear. To do otherwise is the path to madness, which you are experiencing.

You can be free, but freedom isn't what you think it is. Freedom has nothing to do with eating what you want. If you think about it, you were never "free" to eat just anything - for example you can't live on only your favorite cookies. You are simply accustomed to exercising a little self control to balance your diet. It doesn't feel like a loss of "freedom" because you have adjusted your mind to expect to eat a healthy variety of foods. Gluten-free is no different. Freedom does not come from controlling your circumstances; it comes from controlling your mind to suit the circumstances.

You are creating a world of deprivation and fear. It sounds truly awful to live in and you have been there for so long, you can't see anything else. You might start changing your mindset by somehow digging up a feeling of gratitude that you have anything to eat at all. It can be forced, false gratitude to start. What you will find is that gratitude for a warm meal that fills your belly, even when you force it (think of starving children if you must), feels much better than worrying about what you can't eat. Once the gratitude for a warm bowl of rice or a nice piece of chicken becomes genuine it's one of the best feelings in the world.

I'm going to second Karen's suggestion that you look to a church. Religion can be a source of strength and a place of refuge. Until you relinquish the idea that you have some sort of control over your life rather than over yourself, face your fears, and learn to look for the positive within difficult circumstances, you will continue to suffer.
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#21 Skylark

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Posted 01 January 2012 - 08:53 PM

Oops! I guess I've read a lot of literature indicating that it's the jejunum that's usually involved. So much for my biology! But, still, only two biopsies....

Since her all of her bloodwork was negative except for one that was mildly positive, I'm still leaning towards the possibility that she does not have celiac. The only way she can find out is to eat gluten again and demand an endoscopy with many more samples. She could also have her bloodwork re-done at that time. I personally wouldn't wish to face a lifetime of eating gluten free if I really didn't have a medical need to do so.

Suzanna has multiple autoimmune diseases. I know you're trying to offer hope, but I think the chance that the villous damage and recovery isn't celiac disease is slim. It's not what her doctor who did the endoscopies is saying. Also, there are growing reasons to stay off gluten (and casein) with autoimmune diseases because of the bad effects the opiate-like peptides from gluten and casein have on the immune system.

Speaking of opiates, Suzanna, has anyone talked to you about low dose naltrexone? With the seriousness of your liver autoimmunity you should really look into it.
http://www.lowdosenaltrexone.org/
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#22 pricklypear1971

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Posted 01 January 2012 - 08:59 PM

I don't think I ever once mentioned how I think you feel on the diet. I only mentioned how I feel on the diet. I don't transfer my feelings onto any other people who face this disease. In fact, I find it unnerving that I seem to be the only one who felt and continues to feel this way. I cannot say why I am having these feelings. But it's not something I've taken lightly. It's not something I want!

And, yes, I think that is what I'm saying. I don't think I've acknowledged my liver disease. My doctor was actually somewhat surprised (and noted that during my office visit with him) that I didn't break down in tears at my liver diagnosis. I want to live in ignorance. And the celiac does not allow me to do so because it is constantly on my mind. I adhered strictly to the diet. I always had something available for me to eat. Nevertheless, I always felt "without."


I think your Celiac "outted" you, for lack of a better term and you're dealing with two (or more) major life events , and two life-changing medical diagnoses. You could hide the liver disease, but you can't hide the Celiac when people eat around you and expect you to join in, can you?

I'm the Queen of Denial. I get it.

And I know this. If you didn't want help, and didnt want to figure this out you wouldn't be on this board.

If you are still uncomfortable with the Celiac dx do a challenge and retest AND GET 8+ SAMPLES AND REDO THE BLOODWORK. Do whatever you need to do to convince yourself.

And yes, find a counselor. Find a Celiac group. Go somewhere with people who don't make you feel sick or different in comparison.

And most of all, hang in there.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
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Responsive to iodine withdrawal for DH (see quote, above).

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#23 Googles

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Posted 01 January 2012 - 10:59 PM

I am so sorry you are going through this. I know that whenever I got glutened for the first year and a half after going gluten free I would have cravings for bread. Going to the store would make my mouth water. I can't say if you do have celiac or not. It is up to you to decide if you want to go gluten free or not. The only thing that made it so I could make through the transition from getting the diagnosis and going gluten free is that I was already in therapy. I talked about my celiac diagnosis with anyone who would listen. (not about the diagnosis so much as the food that I could no longer eat). Every time I found out a new food that I couldn't eat (for example that most soy sauce had gluten), I was telling everyone around me. I was telling my therapist, and my office roommate, and my house roommates. They were all supportive and allowed me to blather on about it. I don't know how many of them really listened to what I had to say after a while (besides my therapist), but they allowed me to get out my anxiety and frustration about the diagnosis and the life changes. I spent months of therapy session talking about my diagnosis and what was going on. I pretty much spent the first part of every session talking about what I had learned since the last session (and I was going twice a week). This lasted for at least 9 months before I moved and then when I started with a new therapist after I moved (I have other issues besides just the celiac diagnosis) it comes up from time to time again.

Everything below is about finding a therapist and advice on how to go about doing it if you want to.

As to finding a therapist if you want to my suggestion is to check out this resource: http://www.psychologytoday.com/ and in the upper right hand corner you can put in your zip code and it will bring up a list of therapists in the area. Then you can go to the left side of the screen and select under Issues, chronic pain or illness. This will provide you with a starting place for therapists in your area that have this experience. You can limit the search to specific insurance also. If you live in a small area, this might not be as helpful, but it is a place to start. Then just check with your insurance list to make sure they are still covered by your insurance and the specific policy you have. Your insurance will have a list of covered providers and all you have to do is call and ask for it and they will provide you with it. You may be able to get this list from on-line if your insurance has a website.

Other ideas for fining a therapist if you don't want to use the site above are: contact your doctor and find out if your doctor has any recommendations for therapists. They might have names of people they refer people to when diagnosed with chronic illness. If you work at a business that has an Employee Assistance Program (EAP) contact them. This is how I eventually found my therapist and psychiatrist. They will have lists of people. I met with the EAP person and told them what I was looking for and they did the leg work for me. If this isn't an option, whenever you do make contact with a therapist who does not fit what you need (they don't have the right experience or they aren't taking new patients) ask them for referrals. Tell them what you are looking for and ask them if they know of anyone who might be taking clients. The world of therapists is small. They often know other therapists in the area and refer people to others when they can't provide the services needed. If you live in a city with a hospital contact their psychiatry department. Tell them what you are looking for. If they don't have anyone with the experience you are looking for, they should be able to refer you. Just like looking for a new doctor in a city, looking for a therapist takes time and energy. If you live in a city with a university you can look and see if the psychology department at the university has their own therapy clinic. Often they do and provide low cost therapy. There are therapists who work specifically with people with chronic illness. Even if you don't want to talk about the celiac, it seems like dealing with the liver issue would be a good idea.

If you want to find a therapist and want/need more help let me know and I can provide you with more resources if these do not work out.
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#24 beebs

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Posted 01 January 2012 - 11:50 PM

I agree with the others who said that it sounds like you are projecting all your stuff onto the celiac diagnosis. And of course that is normal, you HAVE been dealt a really crap hand and I'm sorry to hear it.

I really think that you should go for a therapist - even if you feel you still can't do the diet, at least somewhere to really get all this stuff off your chest ya know?

In the end it is your choice what you decide to do.

I hate this stupid diet - most of us do. I have very severe reactions - so I am different from you in that I am truely too scared to ever eat gluten again. If my reactions weren't severe I think I'd probably be cheating all over the place, I am not very good at living a healthy life (I used to smoke even though I have bad asthma etc etc)

At the end of the day - lots of humans do things that are bad, smoke, drink, drugs, over eat, don't exercise etc etc.

While I would love to hear that you decide to go gluten free - It'd be much better if you felt ok about it..you know?

Please think about the therapy, I think therapy really saved my life a few years back and I will tell anyone who listens how great I think it is!!
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HLA DQ8, gluten-free since January 2011

#25 AVR1962

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Posted 02 January 2012 - 01:32 AM

I have had kidney issues for 20 years and at times am flat on my back sick and will be that way for days. I first started having trouble when I was pg with my second child. Became a single mom to 2 little girls without their father to help out or even pay child support. I was hospitalized due to a severe infection in my kidneys when my youngest was less than 2. I feared I would die and leave my babies behind and that was terribly haunting. I could not focus this way though, I had to keep myself going and I had to do what it took to support my children and give them a life. So, tons of experiments to see what worked and what did not but my focus always remained my kids.....I was going to beat this.

It wasn't a matter of beating anything. It was a matter of learning to live with it, learning to accept it and doing what it took to make my life more pleasant and I am not saying this is a selfish way. Docs tod me that one day I may be on dialysis and you know, I will cross that bridge if it should ever come to pass. So I get what you are dealing with and I understand where you are coming from.

For it it has seemed like one thing after the other and I almost feel like a medical mystery. I too had a hard time, up and down emotionally with the gluten-free diet but for me I was sick sick sick and this was the only thing that made things better. Sure, there were days I wanted to just throw in the towel and go back to my old ways of eating but I knew what was going to happen if I did. If I did not have such a hard reaction to gluten I may have been tempted. Docs never did a scope on me. I never had a blood test. So much was wrong and docs were clueless. For me, deciding to go gluten-free was a last ditch attempt suggested by a family member. I was at a point of deperation. I really did not think this was going to be the answer and was actually surprised when I saw the results. Do I like it? NO! But just like my kidneys, I feel like I have to do what is best for me and keeps me healthy. No way do I want to go back to being sick like I was before.

You have to do what is best for you. I do hope medicine will continue to progress and you will not need that transplant on your liver afterall. Take care of yourself. If you can't do the gluten-free diet, then you cannot. I do wish you the best. It is not easy but it is do-able. I think more than anything it is a person's frame of mind that makes it possible. I too suffered alot of depression and have been on anti-depressants in the past, and more than once thought I could not go on. 8 months now on a gluten-free diet and I can tll for the first time in years my mental state of mind is better, I can speak without stuttering and tripping on my words, my thought processes are clearer and those a little compared to everything else. If I went to a doc today and they told me my scope showed I was not gluten intolerent I still would not go off gluten at ths point just because I know how much I am improved.

Lady, bottom-line, you have to do what is best for you and what you can deal with in your life but don't give up.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#26 TTNOGluten

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Posted 02 January 2012 - 07:13 AM

I am sure not going to cast stones, because much of how you have felt about this celiac issue is the same for me. It is frustrating as hell, I am angry as well, and question it everyday. I am not sure there is an answer for that, I am still waiting for my relief from the diet sacrifices I have made and yet nothing, I still feel lousy. I guess the best advice I could give you, that I try, is that if you are struggling to find the strength right now, then call on your friends and family to help you out. Someday I am sure you will be repaying the favor to them, that is what I have had to do, don't know if it is your answer, but may be worth a try. I just keep thinking sooner or later I gotta start feeling better, and if I fall back on my support group to get me through then it will pay off?? who knows
Don't be upset about unleashing your feelings on this blog, I do it, I think many of us do it. Somehow it seems to make feel a bit better to vent. sometimes when I am at my alltime low, I try to get pissed off instead and angry, and like my 8 y/o daughter tells me, stress your anger on the disease and your belly pain, it does seem to help
Best of luck to you, with whatever you feel is the best for you, because at the end of the day, that is all that matters!!!
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#27 Debbie48

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Posted 02 January 2012 - 07:19 AM

Your posting made me cry. Please, please do not give up hope!

I just started the diet so I cannot say that I know how difficult it is over the long haul. However, I have been very, very sick for the last 7 months and doctors can't figure out what's wrong. Two things that did come back were positive blood work for celiac and I do carry the gene. However, so many of my symptoms don't seem like celiac disease.

If this diet can truly make my symptoms go away, then I am so grateful for the opportunity to get better without meds.

Please give it another try! I'm not a very good cook, but even I have made some really tasty meals. I don't feel deprived, just impatient about wanting to get well.

You are in a very dark place right now and I know that is scary! There is a light at the end of the tunnel. Please keep looking for it and you'll find it!

Many hugs to you,

Debbie
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#28 GFinDC

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Posted 02 January 2012 - 09:49 AM

Hi Zus,

I hope you feel better soon. I can understand your feelings about gluten free and the limits it puts on your life. I had similar feelings when I started the gluten-free diet. I got kind of emotional about being around food I couldn't eat anymore. Or shopping at the grocery store. There were whole aisles of food where I couldn't eat any of it. It all seemed kind of sucky for a while. I prayed about it every day though and after a while it started getting better. It just stopped bothering me eventually. Now I don't feel that way at all. Not eating gluten is better for me physically and mentally. Being around people eating gluten doesn't bother me anymore either. I just eat before I go out so I am not hungry. I think a lot of it is just habit. We get so used to eating certain foods anytime we want, that we just expect to be able to. But we can change our habits, including what we eat. And once our new habits are learned it is easy to eat gluten-free.

Eating gluten-free and whole foods could be very good for your liver also. Think of all the preservatives, food colorings, emulsifiers and additives etc that are in processed foods. That is all un-natutural stuff that your liver has to detoxify and remove. It's not food, it's junk they put in processed foods. So not eating that junk can lower the strain on your liver.

I read that they don't know what causes sclerosing cholangitis but think it is auto-immune. There was a woman on the board a while back who had an auto-immune liver disease also. Celiac can cause symptoms and damage throughout our bodies, so there is no reason to think it cannot be the cause of your liver issues. So while you think you have no symptoms, that liver issue could be a symptom. There are lots of posts on the board from people who were surprised when symptoms they had cleared up after going gluten-free that they had no idea were related to celiac. Some people could barely walk when eating gluten, but can get around fine now. Celiac is not just a disease of the intestines, it can have affects on any body system.

You have probably read about Hashimoto's thyroiditis and dermatitis herpetiformis right? They are two well known auto-immune diseases related to celiac disease but they don't involve the gut at all Except that people with those conditions often have worse symptoms when they eat gluten.

Just because you don't feel ill in your gut doesn't mean it isn't hurting you elsewhere.
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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

#29 srall

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Posted 02 January 2012 - 10:02 AM

I feel so bad that you feel this hopeless. I understand the grief and the loss...especially the loss of convenience, and feeling left out. 2 years in I am still dealing with those feelings. I guess I am "lucky" because I felt 100% better on the diet and never questioned its importance. Then I had a 7 year old who was also so so sick and it was an enormous relief to find out she "just" needed to eat gluten free. So...I felt lucky. Maybe it's just perspective.

My 40 year old brother is like you. He knows he needs to be gluten free but refuses to "live like that" So he lives with chronic pain, depression and diabetes (diagnosed at age 39). And he's not overweight. It leaves me baffled.

I don't understand that you feel imprisoned by the diet, but I really feel bad that you are dealing with all these health problems and depression. I hope you choose your health. I know we eat healthier than ever before and I love finding new foods and recipes...but again, I guess it's perspective. I hope you find a good therapist to help you through this tough time. It makes me so sad that you would give up this fight...especially if you're a mom.
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#30 bartfull

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Posted 02 January 2012 - 12:14 PM

Add my voice to those who wish they could help. I just started a thread the other day about how much I hate this diet because I hate to cook. I never used to cook! Restaurants, frozen pizza, and grocery store fried chicken were mainstays. Now I have to cook every day. I have to think about everything I put in my mouth. I HATE it! And New Years Eve, a friend asked me to stop by to see their Christmas lights before they take them down. I went in the house for a few minutes and Lisa was cooking and I could tell they were getting ready for a party at their house. I wasn't invited. I KNOW that the reason is that I can't eat anything and it makes them feel funny. It hurt, let me tell you.

And yet I just finished my lunch of brown rice, grilled chicken and broccoli, and I said to a friend, "You know, if they told me I don't have gluten and corn intolerances, I think I'd still keep eating this way. This lunch I just finished tasted SO much better than the junk food I used to live on." Some days I feel like giving up and buying a big loaf of bread and eating the whole thing. Other days I barely think about it. And I never know when I get up in the morning, which type of day it is going to be.

So I don't really have any advice, but I want you to know that you're not alone in feeling crappy about the whole thing. And even though we are all different, we all have autoimmune disease in common, so we DO understand.

I don't know what your religious beliefs are, but it can't hurt to know people are praying for you, so be advised - I am praying for you.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 



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