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toomuchagony

An Intro To My Agony And Too Many (likely Asked Afore) Questions

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Greetings Again, I made it back eh...

Okay, gee where does one start huh... basics are: I just turned 51 Feb 11th, I have a few "prior or other dignosed ailments" which include; Diverticuli (as a result I do NOT eat "seeds/husks" of any kind at all anymore, including grain/plant, and berry fruits). Degenerative Disc Disease (have had 4 neurosurgeries to cervical, lumbar, and sacro spinal vertabrae, these were discetomy/fusion) so I do suffer from chronic severe "back pain" and intermittent parathesis (numbness/loss of feeling mobility) in my extremeties and I do take "daily doses" of painkillers, Oxycocet & A.C.& C (but which I actually decreased the AC&C for fear of included caffiene hurting my tummy!) but BOTH of these medicines "checked out as being Gluten free at manufacturer or CPS", but also importantly from my perspective niether does ANYTHING to stop this "stomache/abdominal cramping pain" I'm suffering. Additionally, I have "Hypo-thyroid" which was diagnosed due EXTREME fatigue (I slept once for 3 days through! so got blood tested) but that was so many years back I do not really recall when, at least 15 years ago. I take Synthroid (again checked to see is gluten free, because as it happens I DO get an immedaite "stomach cramping" reaction just after I take that med now consistantly, so hmmmm but how do I live without my thyroid med!!) Lastly, I have BOTH Osteoarthritis & Osteoporosis, as major ailments. In the minor dept. (or so I had thought) it happens I have a "bumpy/itchy rash" on my feet, which I have had for at least a decade now maybe longer, (I suspect it is celiac) but it's been a case of diagnosed as either excema with fungal complications, (I do have toe nail fungus on both feet and on just my left hand nails severe, right hand is barely effected?) or else as an unknown dermatitis? the Dr prescripes a "fungal cream" mixture and that never has fixed/helped it much at all. Occasionally I get migraine and visual auras, and I am prone to "tooth infection" lately (I do have bad teeth due lack of dentists treatments for years), which has forced me to have to take antibiotics to clear infections and stop my "toothaches"...

So, now about my GUTS and my agony... Firstly, historically while I've had occasional bouts of D, my typical problem for years was Constipation (always thought due to painkillers so basically ignored it), throughout most of my 51 years I've "eaten everything" with total abandon and with no "noticeably significant" reprecussions or consequences, apart from gas/bloating if I ate "too much". Now for about the past 3 years, I have had what I'll describe as "truly unabating gas" (while not extreme/cramping kind, ongoing continual never without ability to burp) and have found more and more specific foods to make me extremely gassy with cramps ie. broccolli, cabbage, cucumbers, onions, etc. which naturally once I caught on to chose to AVOID almost entirely, (though I do adore onions and so every now and again I'll suffer for'em ;) Over the past few years I for the most part "medicated my gas" taking "simethicone" products of all sorts and makers (until just lately some with gluten in them too), as well as "Gaviscon" because inevitably I get "GERD" from doing all the dang "belching" I do daily. BUT all of a sudden, in January this year, I simply began to feel "ill"...

Noticed were, what I thought was likely "wierd/minor flu symptoms" (I do get flu shot) fatique, muscle pain/spasm (hard for me to be able to distinquish ANY muscle/joint/body/nerve pain because I "am in chronic pain" already ;) An unusual "passing nausea" that would "come over me like a wave" and then abate completely, a mild headache and low fever, and MOST especially, a TENFOLD (or more) "increase in my gas/bloating". AMAZINGLY, all the while my "daily movements" were actually the best and most regular (normal) that I have ever experienced, I recall making a mental note that I was in fact, something along the line of "well gee I MUST be healthy or doing something right anyways eh!" yeah shut my mouth if I'd only known what was ahead! From that point I began to notice I was starting to "lose weight". BUT Things PEAKED BIG TIME for me unfortunately, on Feb. 11th, (my brithday) as I spent the entire day in my Mom's bathroom with a SEVERE explosive case of D with extreme cramping and basically was utterly "sick"... I stayed sick, I got worse, I continued to have only D (or very loose) movements, and kept losing weight, so I went to the Dr. and there began another kind of health "hell" in addition to being sick.

So, thus far my diagnosis/treatment path (and believe me after reading posts here I do KNOW just how fortunate I am to be apparently upon a "short term path" to getting celiac testing at all anyhoo) has been: Firstly, he actually gave me NO indication as to "what was wrong" with me first visit to him and simply prescribed me "Nexium for 7 days", 9 days (as appt available!) later I told him still in hell, so he said what I had was likely IBS, and prescribed "the chief IBS drug Dicetel" (4 x day with food), I immedaitely began a "good IBS Diet" (absolutely filled with Gluten of course) and in response I got worse by the day (well by the minute from in here eh ;o) so last Friday, I went to the pharmacy and asked them "what is up?!", they advised I was having a severe reaction and to discontinue immediate and to report to doctor immediate (as if here in BC Canada!) so I quit drug and found out I could see doc again on Sunday. THEN GOD BLESSED ME... as I happened to discuss "my condition & agony" at a business associates an individual with celiac disease overheard from another office and came out to declare to me, "you know dear, it sounds like you might've been misdiagnosed with IBS and have what I have which is Celiac Disease"! Well, she then filled me in on "Gluten", and what "tests I need" and "where the local Celiac Association meets", and I immediately left there Friday afternoon and "withdrew ANY known sources of Gluten" (which were everything on the IBS diet!), and sure enough, I actually felt a bit better each day, and my D stopped though I did not have ANY B movement, and then Sunday I saw the Dr again. Additionally, I researched Celiac online and I found a wonderful "New England Journal Of Medicine Review Article On Celiac Disease", which proved to be a MAJOR assistance to me as I printed it and took it to the Dr thankfully! Originally, his response to my intimation I might have Celiac instead of IBS was bleak and dreary, he chuckled waved me off and said, "I rather doubt you have that! It is very rare", (so sheeesh after what I read/learned I was unimpressed to say the least, BUT prepared, so I politely asked him with due respect would he read just the first paragraph of this article and then continue our visit, he did, and said "okay we'll do blood tests, (which he then had to look up in the article's diagnosis chapter a'cause he did not know them) and then I'll send you to a Gastro Specialist when the tests come back, but there is no way I am ordering any biopsy, and I want to check you for other things, like ulceratiive colitis, H.Pylori(sp?) and so just blood for now" (I sure do NOT fault him for wanting to be thorough in diagnosis even if it's late!) At any rate, I left Sunday noon and went directly to buy "Wheetabix Flakes & 100% Whole wheat bread", I ate nothing but and lots of just that (and peanut butter) until and including Monday morn and I was in absolute AGONY by noontime Monday, so I went and had them draw the blood, now I hope I will NOT "false negative' due to my meager 1andhalf days of "gluten free" (and less pain). So to now though...

Immediately after the blood tests, (and a H.Pylori breath test as well), I came home and took several "remedies" to try to lessen my suffering finally, Roliads, Peppermint Oil, Gripe Water, etc all of which I checked first for gluten. Then I "deglutenized my entire house as much as possible", I did a major cleaning out of my cupboards and washed them and restocked them gluten free, threw away my toaster and got a new one, checked manufacturers of my meds, toothpaste (and I was using the Sensodyne-F NOT gluten free, changed to Crest Pro-health after confirming), AND of course I started to "eat gluten free" once again, (at first just that, but now I have also eliminated dairy for now), BUT unlike the first time that I stopped eating the Gluten, this time I am STILL SO SICK, especially with the severe "cramping attacks' when I'm eating (in my stomach and with heartburn), and then a few hours later again and then again around 1-2 am all through the night I remain in agony with severe cramps which extend to my stomach and entire abdominal/lower back regions as well. Notably, I should point out that to spite my constant gas for years I usually did not have "heartburn" which I have had all day today. At these times now, I have been taking ALL of my various remedies and really, nothing is helping me with the painful cramping, and UNENDING GAS and BLOATING that I have. My B movement today was still D but only the one large movement (but which is typical "daily elimination" for me even when I had my constipation) And indeed as I am here typing now I am still very much just plainly and simply just in "toomuchagony"! Today all I have eaten is; 1 toasted slice of PLAIN gluten free Kinnickinick bread, and a 1/2 cup of PLAIN "instant white rice". (Really I am just too terrified to try to eat, AND when I ate this the gas was beginning to build up even AS I WAS preparing the toast/rice, and major "stomach cramps" whilst eating it again, and ever since I have had/gas cramps and heartburn, relieved a tad by Roliads and my peppermint oil (which gives me GERD too oh well) BUT really, I wonder why I'm not better at all this time yet? Maybe it is something else? AGHHH

One last footnote for this post; it does happen that my Mother, who is 71 now, has suffered all of her life with GI disorders, of every sort, from Prolapsed Rectum, to Gall Bladder removal, to the IBS she has been diagnosed with, and now well ya can imagine I shared with her my experiences of late and we're both wondering whether in fact she too is another "mis/undiagnosed Celiac"!

Well I am sure this post is already breaking some length rule here, so I will forego asking any of my many questions this time... hopefully in future my updates to ya can be briefer huh, but did want ya to have somewhat of a clearer over all picture of "my agony". Thank you in advance to any/all who might choose to reply to me. I am desperate for "some" relief here. And btw, in January I weighed a comfy 140 lbs (am 5'4") today I weigh 123 lbs, (and hunched over in pain so am inch shorter too!) :(

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