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??
Well the past few weeks have been interesting for some new diagnostic studies, was hoping that all the veteran celiac folks could shed some insight. I have been seeing a gastro for 2 months now who I really like, he takes time and is very thorough. I had another EGD 2 weeks ago and an entire battery of celiac labs completed again, which shows normal biopsies and all may labs having retruned to normal, including TTG Iga, Igg, antigliadin Iga, Igg, and deamidated gliadin. This is all good news, obviously as he states I am remaining gluten free to see this improvement, however I still get many of the same symptoms everday. Pretty much continous epigasttri gnawing with slight nausea, constant pain into my rib cage on the right and midback, and occaaionally on the left, and still frequent bloating and burping???
Gallbladder is out as of Dec. 13th, showed chronic cholecystitis. Limiting much of the processed foods, also have casein allergy, which I have removed from my diet, if it does slip in it is very infrequent. Still feel lousy though.
The Gastro is confused as isn't sure if these are manifestations of celiac still lingering, with everything else improved?? I guess what I am curious or wondering about is if patients cont. to feel like this even after there intestines and labs get better, and if so for how long??
Anyone with experience on this, or who has a similar process??
Well after a follow up to see the gastro, got some interesting news, I have been gluten free now for over five months, my epigastric discomfort and back/rib pain continue, but after a EGD on tuesday my biopsy is now reported as normal and my labs are also normal. So I guess I am happy, just still trying to figure out why my symptoms seem the same. Curious to know if the musculoskeletal pain, ribs, back, and belly continue even after your intestine looks normal under a microscope?? Any thoughts????
I have had this guilty feeling with this disease that I should be able to manage it without needing additional help, I am realizing I am wrong. For 5 months now I have had constant 24/7 pain in my upper belly, with never one minute of relief not even when I sleep. I have constant worsening thoracic and rib cage pain that has not improved even 1% since being gluten free. My Gi guy thinks I likely do have refractory celiac disease. I cannot manage the pain anymore, I suffer through the day just trying to get by, but am so depressed over even waking up in the morning, it is hard to even think about facing another day in this agony. I have been reluctant to take any pain meds, but my qulaity of life sucks so bad, most days I am not sure I want to get out bed. Should I continue to suffer through it, hoping it will get better?? I need some sort of relief and soon, I feel like I am dying
I had made a previous post but did not seem to get any responses, so I will throw this out there again. I have been gluten free for 4 1/2 months now after my diagnosis with 3 EGD's yes 3 of them, and labs revealing an elevated TTG Iga, and Igg, as well as demiadated gliadin.
Now since returning to Mayo clinic in Mid november I had my TTg Iga rechecked, and had it again done two weeks ago, and it is undetectable. I have been very compliant with diet and no that this test is used to assess compliance. The doc's cannot seem to understand though why I still have god aweful symptoms of chronic daily abdominal aching, like a deep epigastric nauseating ache, nausea, as well as back pain.
Why if I have done the diet, been compliant, and had normal labs, do I still feel aweful??
I asked the doctor if he felt I have refractory celiac?? can you have refractory celiac and your labs be normal, I don't know? I am in total desperation mode now, willing to try virtually anything.
Please anyone with insight on this, I would greatly appreciate it
thanks in advance