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jasonD2

Feeling Very Sad Today

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i posted earlier about a ski trip that i would like to plan with my girlfriend and its triggered all these emotions about my health & my quality of life and I just feel so sad now. From the time all my health problems started in 2002 until now things have been getting progressively worse...it started with lactose intolerance, which at the time was devastating, but in retrospect if that was all i had to live with then things would be peachy. its at the point now where i can barely enjoy a meal without feeling horrible and hate my appearance cause i cant put any weight on..i cant even exercise or do certain physical activities cause they aggravate my symptoms..i dont know why but they do. I ran up 5 flights of stairs yesterday and couldnt stop burping for an hr. i've eliminated gluten and other foods and took all the measures i was supposed to and i STILL dont feel well...WHY?

I used to love life so much...i was able to travel, eat, drink and felt amazing. now its as if i just dont even care and am wasting away. sorry for the drama but these are my genuine emotions. i may feel differently tomorrow but this is how I feel now.

I am taking antibiotics for 5 days now to treat bacterial overgrowth and they are not helping - i feel no change in any of my symptoms

I dont know what to do anymore...my life is all about which test should i take next or which medication/supplement will help. This is no way for someone to live

thanks for listening


Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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i posted earlier about a ski trip that i would like to plan with my girlfriend and its triggered all these emotions about my health & my quality of life and I just feel so sad now. From the time all my health problems started in 2002 until now things have been getting progressively worse...it started with lactose intolerance, which at the time was devastating, but in retrospect if that was all i had to live with then things would be peachy. its at the point now where i can barely enjoy a meal without feeling horrible and hate my appearance cause i cant put any weight on..i cant even exercise or do certain physical activities cause they aggravate my symptoms..i dont know why but they do. I ran up 5 flights of stairs yesterday and couldnt stop burping for an hr. i've eliminated gluten and other foods and took all the measures i was supposed to and i STILL dont feel well...WHY?

I used to love life so much...i was able to travel, eat, drink and felt amazing. now its as if i just dont even care and am wasting away. sorry for the drama but these are my genuine emotions. i may feel differently tomorrow but this is how I feel now.

I am taking antibiotics for 5 days now to treat bacterial overgrowth and they are not helping - i feel no change in any of my symptoms

I dont know what to do anymore...my life is all about which test should i take next or which medication/supplement will help. This is no way for someone to live

thanks for listening

I feel for you jasonD2. I go through the same thing but have to remind myself I'll feel better tomorrow or maybe even in an hour. Just hang in there. Have you tried meditation and/or gentle yoga?


I love what I do, and feel that it matters. How could anything be more fun?

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I have days like that too and it is so frustrating. I'm trying to get back into working out this week and was doing good until I pulled a calf muscle. Now I can barely walk plus I've had a sinus headache off and on for over a week. It can really get you down. I just keep reminding myself that even with this I feel 100% better than a year ago. This is minor compared to then!

Hang in there! It will get better! :)

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Jason, I have felt like that many days. I think it comes with having any chronic illness. A lot of days, we just don't feel all that great. That being said, try not to let it get you in a funk and try to focus on all the good things that you have in your life, friends, pets, what you CAN eat, etc. Play some music that you like or watch a funny movie. Make a Betty Crocker Gluten-Free pan of brownies and eat the whole thing! :)

Hang in there, it's going to be okay! :)

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I am so glad you came to this forum for support. Everyone here understands- they get it- unfortunately.

I have had a slow start to recovery. It has been getting me down as I have been stuck thinking about all the years I have lost and life experiences I have missed.

Not to mention the financial woes.

So I come here.

And I read all the stories of people who are better. There was one post I read yesterday from someone who was happy to be able to cook a meal for her family. Simple pleasures- but when you have no energy and can't eat for years- it gives me hope. I am looking forward to having more energy and being able to cook for my family.

I encourage you to seek out these stories on this forum. People are running marathons, getting pregnant, going out to restaurants, gaining (or losing) weight, returning to the workforce, going on vacations, you name it and someone here has written about feeling better and all the things that are back in their lives.

Even happiness. So many people were depressed and are now feeling better.

YOU WILL TOO!

It takes time. Stay with it. Use the forum for support, encouragement, and ideas when you don't know where to turn.

We're all pulling for you.

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PS- Yesterday, I responded to someone else's inquiry about acid reflux/GERD. Look for the post- I have horrible problems with GERD/acid reflux for the last 10 plus years. I follow Dr. Galland's protocol for treatment and it has really helped me.

The most important thing I found is his recommendation for powdered calcium. I put a scoop in a one liter water bottle and sip it thru the day. Stops the burping almost immediately. I have written about this several times- check out my other posts.

Post your diet/daily foods and I am sure people here will help you find where you might be aggravating your symptoms. Make sure to add tests/results, supplements, and Rx. Along with all your symptoms. The good folks here will figure it out.

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Did you say in a previous post that you have gastritis? If that is the case that could be causing some of your discomfort. I occassionally eat something (either gluten or not) that causes my gastritis to flare and then I will have discomfort for several days after. Something I have found to really help is coconut water. It really soothes the stomach lining! Also lay off Advil or anything real acidic for a couple of days!

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Living with autoimmune disorders can be depressing and isolating at times, as we all know. Have you considered seeing a doctor who practices alternative or integrative medicine? I recently started going to the Whitaker Wellness Institute in Newport Beach. I met a fabulous doctor there who has put her own Lupus into remission.

Anyways, it was a HUGE relief to get to speak to someone who has more knowledge than I do. She also suggested that I start taking Low-Dose Naltrexone. I


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Coconut water can also be good for constipation!

My new doctor also recommends coconut water. I've always loved it too!


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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And I read all the stories of people who are better. There was one post I read yesterday from someone who was happy to be able to cook a meal for her family. Simple pleasures- but when you have no energy and can't eat for years- it gives me hope. I am looking forward to having more energy and being able to cook for my family.

Lol gee I feel special... My thread was referenced. *grin* It is in fact reassuring to know that I can do all these things I couldn't do before.

Back to original topic. Yes, we all have our days where the world just doesn't seem right. Can't eat this, can't do that, can't drink this. Now let me just be sad while I sit here eating my glutino pretzels, and the chocolate that I know will just make me sicker, but it tastes so good. You want dinner? Okay go make it yourself.

But you know what I discovered really helps me is the emotional support my husband gives. Some days, it is all I can do not to stuff my face with real bread, doughnuts, pizza, and so on. But my husband keeps me in line. He keeps me from eating all that junk. And yes, it is junk.

Last night, I was almost discouraged when we went out to eat because at the restaurant we went to, well, yeah they place bread right in front of me on the table. Its not the easiest thing to resist when it is so light and fluffy and foccacia-y.... Sometimes I just have to remind myself, "Be strong." But the problem is, people tell me I am strong and I don't feel strong. When I had my anxiety attack last week, I repeated to myself, over and over again, "Be strong."

Most importantly, don't do too much at once. You ain't superman. Sorry. You gotta take it one step at a time. Anxiety or no, we humans can't do everything. And right now, even if you don't have anxiety or depression or something similar, you just need to do one thing at a time. Gradually you will begin to feel better. Note I say gradually. If your one step right now is just, "I think I will get out of bed and move to the couch to watch a movie," So be it. At least you are out of your bed. If you decide, "I think I will walk to my neighbors house and back," so be it. Its at least a little exercise. "I think I will make myself some gluten-free soup real quick..." At least you are getting food in your belly. And who knows, maybe after anyone of those things, you might feel like doing dishes, or walking the dog, or whatever. One step. Its the small things that get you started on your road to feeling better.


Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff

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I found that strenuous exercise made me have gluten symptoms too and I had to clean up my diet more.

This reference: http://webcache.googleusercontent.com/search?q=cache:DZWWiLTs0HIJ:www.theglutensyndrome.net/Vojdani_Immediate_Delayed_082907.doc+fractured+gliadin+during+processing&celiac disease=32&hl=en&ct=clnk&gl=us&client=firefox-a

says this about the topic:"Strenuous exercise, medications and xenobiotics, by increasing splanchnic blood flow, may cause an increase in mucosal permeability and the entry of gliadin into the circulation; hence, antibody response against gliadin polypeptides."

Have you tried a whole foods diet? Some of us are more sensitive to low levels of gluten than others.

I hope things get better for you soon. It took me a long time to figure out what I could eat without feeling sick.

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Have you ever tried enteric-coated peppermint oil? It's supposed to kill a lot of bacteria without being harsh on your system. Also cod liver oil capsules are good, too.

Don't get discouraged! You'll get to the bottom of this.

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Oh man, I've had those days :/ Usually when I've just eaten the wrong thing and feeling sick, depressed and useless. Just this week was thinking how am I going to continue with this ridiculous diet for the rest of my life. And then I woke up this morning feeling a bit better, and my stomach hasn't "said a word", so getting some relief from my issues. So what I'm trying to say is - don't get too down when you have lousy days, and appreciate the good days when they happen, kind-of a "take one day at a time" thing, hopefully that's not too cliche.

I feel *really* crap when I'm on anti-biotics, don't know why but they make my stomach troubles 100x worse. Just stick to it until the course is done, and hopefully you'll feel a ton better once you're done.

Also - are those antibiotics are gluten-free?


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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... and hate my appearance cause i cant put any weight on..

Hey, I can really relate to this, because I also feel like a skeleton at times. At least I'm female, so it's nowadays attractive to be showing bones, but it still gets to me. It *really* gets to me. But I'm starting to realise it's not going to change anytime soon, I'm not going to magically gain 10KGs and look like a "normal" person. I'm going to have people ask me if I'm on a fruit diet (yes, someone actually asked me this), why I've lost weight (My brother's girlfriend every time I see her) etc, etc.

Again cliched, but you need to accept how you look - I'm sure your girlfriend loves how you look, you'd be a much happier person if you weren't freaking out about your weight all the time. "Hate" is a very strong word, so I'm wondering if you really feel that strongly about your appearance, or if it was just hyperbole for your post.


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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I feel like this some days! I'm into my 6th month gluten-free and still have side pain and tummy troubles. I've gone from being in pain 24/7 to actually having a pain free morning until I eat or drink, then it's on. I've now been in some type of pain everyday for a year and I know how that can weigh you down mentally and physically. I've been gluten-free and given up a lot of food to feel better. It does make me sad some days and some days I'm just mad about having Celiac! My family told me they don't feel like they can safely cook for me for Thanksgiving, that made me sad, but at least they were honest. Sometmes I think I'll never be pain free, but I'm still hoping the longer I'm gluten-free the sooner I will be able to eat more and be pain free. It makes me feel better to come here and read that I'm not alone with not being about to eat certain things. Hang in there!


How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.

George Washington Carver

Blood work positive 4/10

Endo biopsy positive 5/10

Gluten free 5/10

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I feel ill most days, I know the feeling, it's hard. I got progressively worse too and earlier this year I found out I was even pre-diabetic! So my BP went out and then I found out that I'm borderline diabetic. I took grains off and now BP and sugar is normal. I used to have severe GERD, so bad that one day I literally couldn't swallow. I had to get my esophagus dilated. I was on Prilosec for years and it worked at first but your body builds a tolerance so after a while I felt even worse than before. I was able to get off my meds after going gluten-free, I tapered the PPIs( I took Prilosec, but prevacid works the same way). I took DGL and that helped a lot w. the GERD. So now I'm totally GERD-free but I don't recommend going off cold-turkey off acid reflux meds, especially if you've been on it for over a month. I'm talking about the PPIs (Prevacid, Prilosec etc) and H2 antagonists(Zantac, Pepcid, etc).

So I'm glad I'm GERD free, at my last scope my esophagus was normal, no more strictures, I'm really happy about that. However I have other symptoms right now that has been such a struggle. I just try to focus on the good things in life, don't try to analyze every symptom you have, sometimes you just have to let it go and take each day at a time.

I take quite a bit of supplements. I'm not doctor so take everything w/ a grain of salt. I take vit. D, B6, CystaQ, iron, probiotics and digestive enzymes.


Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).

Extremely allergic to shellfish, Aspirin & Ibuprofen

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i posted earlier about a ski trip that i would like to plan with my girlfriend and its triggered all these emotions about my health & my quality of life and I just feel so sad now. From the time all my health problems started in 2002 until now things have been getting progressively worse...it started with lactose intolerance, which at the time was devastating, but in retrospect if that was all i had to live with then things would be peachy. its at the point now where i can barely enjoy a meal without feeling horrible and hate my appearance cause i cant put any weight on..i cant even exercise or do certain physical activities cause they aggravate my symptoms..i dont know why but they do. I ran up 5 flights of stairs yesterday and couldnt stop burping for an hr. i've eliminated gluten and other foods and took all the measures i was supposed to and i STILL dont feel well...WHY?

I used to love life so much...i was able to travel, eat, drink and felt amazing. now its as if i just dont even care and am wasting away. sorry for the drama but these are my genuine emotions. i may feel differently tomorrow but this is how I feel now.

I am taking antibiotics for 5 days now to treat bacterial overgrowth and they are not helping - i feel no change in any of my symptoms

I dont know what to do anymore...my life is all about which test should i take next or which medication/supplement will help. This is no way for someone to live

thanks for listening

Hang in there Jason! This forum has been a lifeline for me. When I was first diagnosed I moved to new town/state literally the day after all of my test results came back. Shortly after my son went to college, my husband back to work and I spent a lot of time in bed watching TV and feeling sorry for myself. It's hard not to and I still have days like that. Then I decided to be proactive and learn more about this disease (outside of reading the books I had read). an interesting thing happened - every query I entered brought me to this forum. It has been a lifeline for me ever since. I have never met a more knowledgeable, generous, and kind group of people gathered together in one place. So when you are feeling at your lowest point come online. If you want to laugh go to the forum topic anything but celiac and then to the tickle your elbow thread.

Most importantly know that you are NEVER alone! We are all here for you!!!

Loey smile.gif

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I feel like this some days! I'm into my 6th month gluten-free and still have side pain and tummy troubles. I've gone from being in pain 24/7 to actually having a pain free morning until I eat or drink, then it's on. I've now been in some type of pain everyday for a year and I know how that can weigh you down mentally and physically. I've been gluten-free and given up a lot of food to feel better. It does make me sad some days and some days I'm just mad about having Celiac! My family told me they don't feel like they can safely cook for me for Thanksgiving, that made me sad, but at least they were honest. Sometmes I think I'll never be pain free, but I'm still hoping the longer I'm gluten-free the sooner I will be able to eat more and be pain free. It makes me feel better to come here and read that I'm not alone with not being about to eat certain things. Hang in there!

The best thing about this forum is that none of us are alone!!!! Glad to hear that you are not in pain 24/7. I look forward to that. We are all in different stages of this disease. I just had a biopsy of an ulcer that was discovered after a capsule endoscopy so that's another cause of pain. I'm just grateful that I can come here and know that someone will have an answer to any question I ask. And we will all get better (I'm a Pollyanna)!!!!

We're going to stay at a cousin's house overnight tomorrow before a funeral and he called to see what he could cook that I'd be able to eat (I thought it was very sweet). I explained that at this point it's just easier for me to bring my own food and my husband will enjoy eating a meal that isn't gluten-free for a change. I'll explain the disease to them tomorrow. In the meantime I'll cook our holiday meals here and invite our family to join us.

Loey

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Hang in there Jason. You do have triumphs and improvements here and there and you have a girlfriend now. Stay focused on those things as much as you can.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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