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How Many Of Us Assume A Gfd Will Fix It?
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To everyone here: please do not give up...I have been where many of you are...I am feeling better, but it has been a long, uphill battle! My first words...do not be so hard on yourself...second, accept your new normal. I have also had and suggest bloodwork to check your viral levels. Seems like every virus I had ever been exposed to was active in my body. This is because your body attacks the gluten and all the good guys keeping all those other bad viruses are called in to fight the gluten. In my case the viruses attacked my cns causing nerve damage....it has been almost 3 yrs now...steady as she goes...I am not 100%, probably never will be, but I am sure better than I was 3 yrs ago...laying on a couch unable to stand the touch of a sheet against my body, drugged out on narcotics because drs were not treating nerve pain....I still take anti-viral meds, cymbalta and celexa for nerve pain, baclofen for muscle spasms, and a host of supplements; however, I was taking main meds 4 times a day and now down to 1-2 times a day. Recently, cut back on supplements...yes, I still have good days and bad days...but, I rest on the bad days....and it is not always possible, but I know when I have to push through...I will be resting...no more, pushing 24/7...

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I have not posted anything in quite awhile, I guess I just need to vent again. I am have been looking for that miracle of health for 1 1/2 years and according to Gi doc, he really doesnt know why I feel no better. I have been strictly gluten free for this time frame, and according to my last few sets of labs my TTG Iga has been back to normal and my biopsies are normal, at best the only thing that has improved is maybe some bloating, but I still have 24/7 deep aching in my upper adbomen that feels like a constant knot. It hurts so bad that most days I have a hard time functioning and maintaining my job, and pain radiating straight through into my back, and now daily joint pain. Almost feels like someone is pushing their fist into my upper gut or twisting it??

Anyone else with these symptoms? My bloating seems to intensify at times, but the pain in relentless. I have had nearly every scan, xray, 24 hour probe etc. and find it hard to believe that it is related to food ingestion of other intolerances as when I limit them or stop them, it never goes away, it is almost like my gut is permanently damaged, but according to EGD it has healed on biopsy and labs are normal??

I don't get it at all. Still desperate for any type of answer.

Any input would again be helpful? I can't honestly somedays imagine that I can continue to live like this for much longer

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The pain high in your chest and through to the back is very typical of acid indigestion. It can be in the stomach and climb into the esophageal area. Have you looked at spicy or acidic foods to see if they might be the culprit.

I hope your able to resolve it soon

Best of luck,

Colleen

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I really do not eat any spicy or acidic foods, I have had PH probe testing acid and they say everything is fine, this doesnt really burn , it is like someone is putting their fist in my but and I have extreme mid back pain into my right flank, gallbladder is out, last EGD 6 months ago they say is OK, pain is incredible, constant, relentless pressure twisting sensation. Worse than 16 broken bones that I have had in my life, if that puts it at a level. No diarrhea, bowels pretty normal, doesn't feel like a crampy upset stomach

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Okay. Two things I have had in that area are periformis syndrome. This is the muscle that runs across the top half of you butt. Hurts to hold a position long and hurts to change that position. Sacroilitis can go along with the periformis thing. They can both be aggrevated by muscle strain and inflammation. they can also send the pain going up to mid back, that could be a degenerative disk. Sacroilitis alone could send pain down the hips/legs.

Worth some investigation,

Colleen

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I worded that previous post wrong, I meant to say it feels like someone putting their fist through my upper belly into my midback, not my butt, it extends right along the rib cage on the right. I have had a look at my back as the source which was unremarkable with exception of slight thoracic deg. disc at age 42. They even tried to do some steroid back injections with no improvement on three different sets of injections. It feels like it is coming through my gut and then making my midback and ribs very painful. I have even questioned the GI doc about sphincter of Oddi dysfunction, but he say no as my labs are normal. The sucky thing is that almost all pain meds give me such a headache like a bad hangover that it is not worth it to stay on them, or at least I have not been able to find anything to give me relief

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It took me about 2 years gluten-free before I began to feel any benefit; even then I put the "recovery" in part due to the fact that I returned to the UK for a break and responded to a more familiar diet.

3 years on I still have problems, though better. A few things to consider:

First, if you have watery diarrhea you might want to be checked for microscopic colitis (inflammation of the large intestine) which has a strong correlation with celiacs (I have it)

Second, you might have IBS too (my doc says that I also have this!!!)

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So here I am, sitting in my rocker at 0800 in my PJ's waiting for the Ativan to kick in to quell the nausea a bit so I can shower then eat goodness knows what? :huh:

Thanks for passing along your neighbor and your doctor's advice. I also can't do SCD (or GAPS) because it makes me sick, and I'm looking for other options. I have iron overload so I'll skip the red meat, but everything else sounds great (except brown rice...need to do white or I'm in trouble). I've found soaking grains for 24h to be IMMENSELY helpful, and I've gotten really into fermenting my own foods, which really seems to help digestion. (My probiotic pills are in the mail, too.)

One thing about nausea...I had it constantly the first week I went on the GFD. I know it sounds stupid, and you've probably already tried this, but homemade and very strong ginger tea got rid of it for me. In fact, there was just a study that ginger tea is effective for nausea, at least in the context of morning sickness: http://well.blogs.nytimes.com/2012/12/03/really-some-herbal-remedies-can-be-useful-during-pregnancy/

Anyway, apologies if you've already exhausted this. I just sipped on ginger tea constantly (I grated tons of frozen ginger into water, boiled it for 20 minutes or so, and threw in some sugar cubes when I drank it). At the least, maybe consider it as an additive for your smoothie.

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    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
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