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TTNOGluten

Frustration To The Max

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I have not posted with the exception of yesterday in quite some time, mostly out of my own frustration and battling some of my ongoing demons. I found quite honestly with my lack of improvement that I was getting depressed reading all of the posts about the debilitating nature of this disease. In the past year my life has been stolen, going from an active guy who exercised daily, father of two, never taking any meds, with a busy active life, to dealing with chronic abdominal pain, intractable pain in my back and ribs, nausea, and feeling like I have the flu everyday 24/7. I have been gluten free for nearly 10-11 months, my labs have normalized and my biopsies after 4 EGD's are back to normal. I have had more tests and even my gallbladder taken out because of this abdominal pain yet no resolve. I have hunted for every food intolerance imaginable, but realize my pain is constant and never resolves regardless of what I eat excluding gluten of course. I know I am not cross contaminated as it is constant with zero improvement from day 1 with the exception of bloating only. Pain now requires me to use pain meds daily to function, multiple well respected GI docs have no explanation for the pain, MRI's, cat scan's reveals nothing and all labs have been stone normal except an ANA test, although rheumotologist is not convinced that I have a rheumatologic process that is casuing this.

So after all ramble, I guess I am curious to know if some folks are just stuck feeling indefinite symptoms, even though the GI doc says all is healed and this is not extra-intestinal manifestations of celiac. Maybe I am jsut stuck living like this with chronic abdominal pain and being in misery everyday. Hard to believe, but I am at a loss. quite frankly tired of trying this supplement and that with no consistent improvement, maybe this is what chronic pain does to someone, is make you a grump ass after a while and makes you lose all hope, because that is where I am at. Quite honestly, when I look back at things it makes me wonder if celiac disease is just an incidental finding, or does it really do all this to someone and really never improve clinically although biopsies and labs are now normal??

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So sorry you are having to deal with this. Have you made sure that all meds and supplements are gluten free? Is your home gluten-free? What are you typically eating and drinking? Are you a smoker (cigs)? If you have pets are they gluten-free? Is there anything that helps the pain like Pepto Bismal etc?

I wish I had a helpful suggestion for you and I hope this resolves soon. There are doctors that specialize in chronic pain conditions perhaps one might be helpful.

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My home is as gluten free as I could possibly imagine it being, I have different toothpaste, soap, utensils, different grill. I cross reference all my own meds as does my pharamacist. No pets, had to put dog down last year, never smoked, drink very little other than water or almond milk, once a month I will have a gluten free beer but can only handle about 1-2 max. I know sounds like a boring life, but I am desperately trying everything in my power to deal and find this out, I am trying to stay proactive, but am feeling defeated after a never ending battle with this pain. I hate the thought of taking pain meds with a passion, but at least some days I can pseudo function and try to enjoy my family. I am convinced that I have some type of auto immune process, its just that I nor anyone else seems to be able to figure it out and provide any guidance or hope for improvement.

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...I guess I am curious to know if some folks are just stuck feeling indefinite symptoms, even though the GI doc says all is healed and this is not extra-intestinal manifestations of celiac. Maybe I am jsut stuck living like this with chronic abdominal pain and being in misery everyday. Hard to believe, but I am at a loss.

I wonder if you are super sensitive and might benefit from trying a vegan/GRAIN free menu for a few weeks. I was thinking that there isn't any risk in trying. It takes some commitment, because EVERYTHING would have to be prepared from scratch (even some store purchased/prepackaged almond milk contains malto dextrin - corn). But it could be worth a try...to see if symptoms ease up.

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Have you been checked out for intestinal bacteria and candida overgrowth? It could be something else entirely.

Best wishes to you. That's a tough situation. :(

Nicole S

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I have to say your post really speaks to where I am at myself right now. I was diagnosed almost two years ago and seemed to be improving gradually, but in the past few months my health has been in a downward spiral. It seems like I continually have an endless abyss of issues cropping up and I have no answers as to why. I understand how frustrating it is...especially since it sounds like you are like me and have tried to make sure you are in no way getting any possible trace of gluten. I do want to tell you please do not give up on finding an answer to your issues. I was reminded of this tonight after a long talk with my husband. To give you a little background, I was diagnosed with another condition back in 2005 that affected my autonomic nervous system and was very debilitating. The Dr's bascially compare the quality of life of living with this condition to someone with congestive heart failure. I remember how I felt that year...trying to get answers, being in and out of the hospital and being more exhausted than I thought was humanly possible. When I was handed the diagnosis I thought well at least that answers some of my questions, but I still knew something else was wrong. I didn't listen to my inner voice and instead just took what my Dr's said and tried to make the best of my new existance. Well, fast forward to 2010 and I get diagnosed with Celiac Disease which the Dr that diagnosed me said based on the almost non-existent villi I had been sick for many years. I still think if only ONE of the Dr's had thought to test me back in 2005 would my health be better now? My Dr's now think that my untreated Celiac disease is what caused the other condition. I know how easy it is to get frustrated and give up on finding answers...especially when you are not feeling well every day. As much as I hoped to not be in this position again I am back searching for more answers to my puzzle, but I know I don't have a choice. The alternative is not acceptable to me. It is your life and you deserve to not be in pain. I hope you find your answer soon!

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Based on you feeling flu-like, other pains within your body and a positive ANA it sounds like my friend's symptoms with Lupus. I know it is more unusual for men to have it, but you may want to get a second opinion from another rheumatologist especially since your ANA test was positive.

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Does anyone bake with wheat flour in your home?

It hangs in the air and is easily by breathing and swallowing....

It only takes trace gluten to keep you feeling totally lousy...so I'd re-visit cross contamination if you live with gluten eaters. They eat a sandwhich and grab the remote...you grab the remote and then eat your sandwich....

And if they grab in the same bag of potato chips while eating their sandwich...they gluten several chips on the way. This has happened to me. Gotta have your own chips unless the rule is clean hands only.

Some people are that sensitive.

I was going to suggest you try going Paleo/Primal. Like Mark's Daily Apple.com.

I did that for about 6 months then did a month of eating gluten free grains again....and I had to start using prescription for nausea again...and had lot's of digestive issues. I'm going back to Paleo/Primal. It isn't for everyone...but it sure made my recovery go fast. I had been gluten free a year before I tried it. felt better than I ever had. It is kinda hard to stick to...but you will never be hungry. I keep falling off the Paleo wagon now trying to go back on it. I like sweets. But you might be someone who cannot tolerate grains. Paleo people think all grains have anti-nutrients that keep humans from absorbing vitamins and minerals. You can check it out if you want MDA.com.

I know it must really suck to be in that much pain every day. And to get suggestions you may have already tried. But ya gotta keep trying until you figure it out. I'm so sorry you are hurting....I do hope you find something that helps.

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.....to dealing with chronic abdominal pain, intractable pain in my back and ribs, nausea, and feeling like I have the flu everyday 24/7.

Pain now requires me to use pain meds daily to function, multiple well respected GI docs have no explanation for the pain, MRI's, cat scan's reveals nothing and all labs have been stone normal except an ANA test, although rheumotologist is not convinced that I have a rheumatologic process that is casuing this.

You sound like an undiagnosed, early stage spondy to me, one who is reacting to taking a lot of over the counter or script NSAID anti- inflammatories, which have their own sets of problem causing symptoms when taken in large quantity daily.

I used to have a doctor who understood this decades ago, but since moving to this state the "experts" I have seen have been less than helpful, and some have been downright incompetent to where I wondered how they managed to still have a medical license to practice. This is because I'm the "wrong" sex and don't have any blood markers.

You have high ANA ? What's up with that ? I have some horrible scans and x rays and have gotten dissed twice, no, 3x by docs pretending that they didn't show damage. Bizzarro - land.

The only way I can somewhat put up with this was to get very, very strict with my diet, and use a lot of tricks of physical conditioning and mental concentration. (my primary care doctor cannot believe I can function with that sort of c- spine, but it's not like I have a choice there). I also cannot take NSAIDS daily or they cause more problems than they fix, although when I was younger, that is how I survived, but my stomach, kidneys and liver just won't put up with it now.

It took quite a few years to get to where my rib cage usually doesn't bother me, but I am honestly now more flexible in my fifties, than I was in my thirties/forties. And it's surprising that my knees seem better. (feet/hands, :ph34r: finally catching up with me). But there are some things I am just "stuck" with, like chronic tendonitis.

Maybe try going on a modified SCD or paleo ?

Oh, and any lyme disease testing in there ?

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Sometimes when I read these responses I get a little choked up as corny as it sounds. I cant believe the outporing of help and suggestions that come from many of you who have walked a similar path. It is a lonely place to live many days, sometimes I think I am being punished somehow for my youthful stupidity. thankfully I am blessed with a wife that is a rock and two great kids that have pulled me through this kickin and screaming.

I found it interesting about the rheum studies as well with the positive ANA, I also have a HLA-B27 marker, and have thought about anklylosing spodylitis, but the docs I have seen don't think this is the issue. Seems like my muscles in my back are a disaster and around into my flanks especially on the right. Maybe I should try a paleo type diet to see, I know it will be a struggle, as I do eat alot of variety, but maybe worth a shot.

Sorry for whining, but this just sucks!!!! Last year I was doing daily p90x workouts and running 2-3 miles every other day, this year I am running to the bathroom cause I feel like I am going to Yak all the time and in pain. Hard to believe honestly! I struggle admittedly with accepting this change in my life

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Sometimes when I read these responses I get a little choked up as corny as it sounds. I cant believe the outporing of help and suggestions that come from many of you who have walked a similar path. It is a lonely place to live many days, sometimes I think I am being punished somehow for my youthful stupidity. thankfully I am blessed with a wife that is a rock and two great kids that have pulled me through this kickin and screaming.

I found it interesting about the rheum studies as well with the positive ANA, I also have a HLA-B27 marker, and have thought about anklylosing spodylitis, but the docs I have seen don't think this is the issue. Seems like my muscles in my back are a disaster and around into my flanks especially on the right. Maybe I should try a paleo type diet to see, I know it will be a struggle, as I do eat alot of variety, but maybe worth a shot.

Sorry for whining, but this just sucks!!!! Last year I was doing daily p90x workouts and running 2-3 miles every other day, this year I am running to the bathroom cause I feel like I am going to Yak all the time and in pain. Hard to believe honestly! I struggle admittedly with accepting this change in my life

A few more thoughts for you. The high ANA is most likely un diagnosed autoimmune disease. In me, I felt like I was constantly on the verge of coming down with something, but never did, including swollen lymph nodes, sore throats. I also experienced vomiting in my mouth consistently. That one is esophageal disease. The acid irritates the throat, gagging, nausea. This can also cause stomach irritation and pain radiating to the back.

Pain in your back. I also had severe pain in my lower back. I have lordosis of the lower spine, but that wasn't causing all the pain. I also had pain going into the top half of my butt. It was periformis, when the swelling was really bad, it would cause pain in the sacrum, that becomes sacroilitis. Both are inflammatory issues. Sacroilitis can put pressure on the sciatic nerve at its worse. The pain would sometimes radiate up to the shoulder blades.

All of this can be caused be autoimmune issues. I was also on high dose ibuprofen, immune suppressants and pain meds. These cause a whole host of side effects on there own.

In the end, autoimmune problems, aside from Celiac, can be just as destructive. I would urge you to pursue this avenue. I hope you get some resolution. I wish you the best of luck.

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I have had ongoing problems with the gluten free diet as well. I went to an unprocessed food diet. I source my grains carefully and sort and wash before consuming everything. It is amazing where you can find grains which look like gluten containing grains. I started avoiding coatings on produce and things grown on straw or with gluten containing slug bait. I buy locally direct from farmers so that I can ask questions. Now, sick of finding out the hard way, I have started growing as much of our own food as possible. I keep careful records of what I eat, where it came from, and how I reacted to it. I can't function at all normally when glutened as I get uncontrollable D. I will do whatever I have to do, and I've had to do a lot.

After almost 20 years of being unable to work, I have a part time job. I am strong and can work hard in the garden. I can go on runs and exercise. I have mainly good days. Things are getting better and better. Even better than that, my son is totally symptom free.

Keep trying. There are many possibilities to consider.

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