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fourleaf added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsQuestion For The Experienced Here...Is it common for symptoms that are related to different organ systems (ie GI, bladder, skin,brain) to come and go in seemingly no related pattern? In other words do most people always get reproducible symptoms or is there a subset of people who are gluten intolerant that have NO consistent symptoms?
What I have found is that my symptoms have slowly escalated over my life (now 46) but while one set of symptoms improve intermittently (GI) others worsen (skin and bladder). It becomes very confusing to decipher what the heck is going on... but I am convinced that they are all related. The chance that I have 3 or 4 separate issues that NO doctor can figure out vs one thing that is responsible for all of them seems to favor the one over lying cause IMO. It seems to make sense that an overactive immune system is searching for a variety of targets to attack and then (at least in my case) backs off for a bit... until it starts again. I just hope that by cleaning up my diet I can get to the root cause of the issue!
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fourleaf added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsFirst Post - Hello All!46 year old male here... floored by the realization that my deteriorating health over the last 5 years is possibly gluten related. But it all fits and reading everyone's stories is both daunting and hopeful if that makes sense. For me my symptoms seem to come in waves that I can divide by ages in my life.... some stay always, some leave. It never seems consistent and even with gluten in my diet I cannot reliably say that I always feel bad immediately after the food. Does this make sense?
Childhood- chronic abdominal pain. I can remember having to walk around vigorously just to keep my mind off the pain. Don't remember bowel movement issues though... Also had recurrent aphthous ulcers (hated those things, man they hurt!) Always gained weight and grew... otherwise healthy. Until I awoke one day with parotid glands that were the size of softballs!! No diagnosis ever given... but it seemed to resolve. I think now it was all related.
Adolescence- IBS type symptoms ALOT...mostly gas, cramping and diarrhea, but had normal times too. Started with a rash on my scalp that has been a chronic life long thing (unfortunately). Best described as very itchy, painful, burning pustules scattered in various locations. They eventually scab up but take days and my glands (behind ears and back of neck) swell and are painful too. This recurs alot sometimes and then less other times (no pattern I could ever see). Controlled with Tetracycline, Minocycline, or Bactrim chronically. Eventually the antibiotics would stop working. went on Accutane (in my late 30's) and this helped immensely but they came back when I stopped the Accutane (and unfortunately the Accutane ( I think) contibuted to some difficult GI issues too (see below). The weirdest symptom of all involved my urination. It's been so long I really can't remember how it started, but I noticed that I did not pee in a straight stream anymore...it sprayed or split. Otherwise I had no urinary issues. No infections... Maybe some intermittent burning, but that lasted only a few minutes. Had complete evaluation with scope and all (that was fun) with NO diagnosis. ( a recurring theme in my life... complaints that ARE REAL and no positive tests or Diagnosis).
Early adulthood- continued intermittent cramping and diarrhea, continued scalp rash and continued urinary issue ...then blood in stools diagnosed as Ulcerative Proctitis. This was controlled easily with topical agents (suppositories/enemas). Seemed well controlled. Had a second bout of unexplained parotid enlargement (gone in 3 days). It hurt but then subsided.
Present (last 10 years)-- started with frequent sinus infections. I never had these, but now I could not just get a regular cold.... it would linger and I would need antibiotics. After one of these episodes I developed C diff. colitis. Responded slowly to several different treatments. Months later I started with more blood, mucous in my stools and was diagnosed with ulcerative colitis (mild per my GI). This got cleared and I continue on maintence meds today. A year later my GI tract seemingly "shut down". It would make very loud rumbling noises but it seemed like nothing would move. I was always bloated, full and very constipated. Sometimes I could only go with suppositories or enemas. I was scoped again and even had a biopsy for celiac which was negative. Blood tests also negative. Empirically went Gluten free (but likely not fully as I did not know what I was doing). Seemed better but that was 4 years ago and I really cannot remember anymore. All my GI symptoms my whole life have been intermittent. I would have days that I would be OK but then others where I would be miserable. Lastly, I now have (over the last 2 years) new bladder symptoms where I feel that I have to go all the time, feel bladder fullness and feel like I Really, really have to go when my bladder is just normally full. This has been the worst truthfully as it has led me to serious bouts of dispair. Only now does it seem to be getting better Thank GOD
I also have been fatigued alot more lately and have had various muscle/joint pains (not serious just a nuisance). Still have the dreaded scalp rash too... it's all enough to make a sane guy not so sane after awhile. But I am still hopeful and convinced (despite all my specialist's feelings) that it is ALL related to an underlying autoimmune process... and I think gluten is the possible culprit. Sjogren's (blood test negative, no salivary biopsy done), IC (recent scope did not show anything but am slowly better with Elmiron) and celiac tests have all been negative but I KNOW THAT IT IS ALL TOO COINCIDENTAL.
So... next stop... significant diet modification. I pray that it helps ALL my problems. Looking at Gluten free vs Paleolithic vs specific carbohydrate diet. Looking for guidance I guess... a friendly cyberspace voice or just a "Hello". Not sure what I hope to really accomplish with this novel I just wrote!
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