Ah, 100% Newbie, Dumbfounded

[NoKittyNo]

Hello, hello.

Well, it's 12:25am, May 25th, 2012. Captain's log.

KIDDING. Sorry, it's late and I feel sick as per usual and humour makes things bearable. Okay, where to start (assuming I haven't had my thread deleted or ignored due to the above crack, Lol).

I in no way know a smidgeon about Celiac, Gluten, nadda. Reason I am posting is because in the last 2 weeks I have been terribly ill, terribly. I've felt nauseous randomly - where I am 99.999% sure I am going to throw up, I have literally up and left workdue to the sickness I have felt, after sitting on a bathroom stall awaiting (so I thought) the inevitable. Nada, as per usual.

Now this isn't a 2 week stint - no, I have (to my recollection anyway) been suffering with bouts of abdominal pain, and sickness since I can remember of about age 17 (as stated: as far as I recall).

My Symptoms have, and not been limited to the following (some at the same time, some not)

Diarrhea

Abdominal Pain - Sometimes mild, sometimes severe I wanna cry)

Constipation - This is a tricky thing, it's like I have it, but I don't? The pressure is painful and even if i'm "regular" I feel backed up, and once I relieve myself I feel okay, but sometimes the relief feels temporary, I find I can't usually go until I have eaten something, like it needs help to push it out of my system, of that makes sense

Gas/Pressure- inside my abdomen, and pain radiates all the way to my back sometimes

Bladder - Thought I would throw it in, I was told I may have an "over-active bladder", that was the general consensus after being riddles with a constant "pressure" for years (about when the IBS symptoms started, so I was told what it was)and have been given tubes up me, kidney/bladder Scans, medication - no avail. When stomach pain is relevant, the bladder pressure is 2-fold.

Heartburn - This only seems to appear when the other listed symptoms arise, otherwise I don't suffer on it alone)It's like I am backed up in my oesophagus, like a sewer drain, clogged and sitting near the top.

Dizziness - Not always accompanied with the stomach discomfort, but it's like if I turn my head everything spins, and when I am at work I have to keep my head straight to stop it, but it never works.. my head just swims.

Feeling Faint- It's like, "i'm going down!" cause I just feel like my body literally is dropping from under me

Burning/Head Itching/Hair Thinning - I just read a post on this, is this a symptom as well? It only happens once inawhile, but when I get it I have no idea what's wrong, it literally BURNS, and it's itchy and I will shower (even if I had already) assuming it's dirty? Even if it can't possibly be, and it drives me nutz

Tingling in my Feet (once hands, or twice)

Eye Issues - It's hard to explain, so many things. For once my vision naturally sucks, I sit at about a -9 each eye, give or take, but in the last 2 years or so, I developed this "Snow" in my vision, I also get flashing, when transitioning from Light/Dark, this is a daily thing - never gone, if I go to the washroom in the middle of the night, it's flashing (i've had NUMEROUS eye appointments with alone 4-5 doctors, and a bran neurology scan as well, nothing) and it sucks. If I am walking my dogs and the sun is setting, my eyes go funky.

I am sure there's more.. I feel like a catalyst of symptoms dictionary with no links to a cause.

Couple background/re-cap things:

I am a 24 year old Female, experiencing said-symptoms since I could recall at 17. I have been seen by the following:

Endocrinologist, with lab extensive lab tests sent out checking for things from Diabetes, to Thyroid Problems, everything and nothing.

Urologist, tubes, scans, you name it.

Family Doctor, I could call him "Pa" I see him so much, less now as i've almost given up..

Optometrist

Opthamologist

A guy who checked my colon.. No idea the profession, list goes on

So if you're asking yourself, what brought me to this site? Well, actually - my mom. I've been terribly sick the last week and a half or 2, few days I am sick as a dog, then one day fine, then sick again, to date I have lost about 18 hours of work due to this, in the last 2 weeks, to which I cannot afford.

I just went to the Family Doctor today, and he reiterated all the tests I have done that come clean, and basically insinuated i've seen everyone, what else can they do.

My mother has a Cousin, who's daughter has Celiac Disease, and she happened to talk to a lady from an establishment who brought up the idea, after such she linked me to this site and I read through it. I got a sheet from the doctor for a, "Celiac Screen" test, which I will try and get done tomorrow (Friday if possible) but honestly, with what I have been living with.. I know like every-single other test I have taken it will probably come back negative, making me look crazy, insane and pathetic for being sick - I am sure people think I just want attention, but all I want is to feel well.

So.. People.. if you've kept up with my mindless drabble, what are your thoughts?

[PS: My current breakfasts' have recently changed a few weeks/months back from my boring Cereal/Granola Bars, to Scrambled Eggs with a side of OroWheat Sesame Sprouted Grain Bread, with Organic Honey and Adam's Natural Peanut Butter, dinners average Chicken, Fish, Pasta, Sweet Potato (dont like normal Pottaoes).. Coffee with Cream/Sugar ... etc

[ravenwoodglass]

Get that blood test done ASAP. You do sound like one of us. If your doctor can add vitamin and mineral tests to the lab slip that would be a good thing. B12 especially as the tingling can come from a B12 deficiency. Keep eating gluten until all celiac related testing is finished. If your tests come back positive most doctors will want you to go for an endoscopy to biopsy for celiac. However celiac blood tests and the endo have high false negative rates so when all testing for celiac is done do give the diet a good strict go for at least a couple of months.

[GFinDC]

Yep, get the celiac panel done. Like Ravenwood said, try the diet regardless of what the tests say, but after the endoscopy if you decide to have one.

The world falling out from under you feeling is something I recognize. I think it is from falling blood pressure, and it used to happen to me. For me it turned out to be caused by soy. Soy inhales loudly (sucks) IMHO.

If you do have celiac, you may not be absorbing nutrients like vitamins and minerals very well. That can cause all kinds of problems in a body. Once you go gluten-free, and your gut starts to heal, and those kind of symptoms should diminish.

Alternating C and D is a common occurrence for celiacs when exposed to gluten.

[mushroom]

Most family think symptoms like ours are attention-seeking / hypochondria; many, many doctors think symptoms like ours are hypochondiria / all in our heads. Don't believe either group. You know your own body - keep seeking answers. Definitely get the celiac panel run, and if the tests are negative don't believe them either, get the biopsy if you can. If that is negative don't believe that either - try the diet. If that doesn't work after three to six months (including eliminating lactose) -- well, I'm sorry, you'll have to keep seeking. There is a reason, it's the finding it that's the hard part. But I have a sneaking suspicion it is the gluten.

[squirmingitch]

I'll add my 2 cents to all of the above very knowledgeable celiacs. GO get the blood test, then endoscopy if the doc will do it. If all those come up negative then like everyone else said --- go gluten free & test it yourself.

You do sound like one of us. I had the world falling out from under my feet. The head spinning. the feeling you were moving when sitting perfectly still. Tingling in hands & feet --- more like needles. I could go on but you get the picture right?

One thing. Do NOT stop eating gluten or go gluten light until you've had an endoscopy. Keep cramming that gluten in like a good girl. There are enough false neg. tests that you want the best chance you have okay?

Let us know what happens. we're a nosy bunch.

[NoKittyNo]

Thanks guys for your input! Sorry I took long today to respond (then again, I don't know the customary response time for such forums, LOL) - in these days we like our things instantly, hey?

So I actually went to work today, i've missed several days being sick, and lost a chunk on my paycheck. I know it is suggested to keep in-tune with your diet, so abstaining from your usual with mess up your results, but hypothetically if this isthe issue, I wish I could just change my habits now and prolong the pain I suffer. Normally I would have Eggs and a slice of OwoWheat Sesame Sprout Grain Bread, but I didn't want to possibly start the issue again, as I hadn't called in sick and wanted to do this, so I compromised and half half a slice.. (Lol).

I felt alright, still dizzy from time to time, and my stomach wasn't too bad... I went for the Celiac Blood Screening test, so we'll see in a week or so how that goes.

I work in retail, so I had seen a few customers purchasing Gluten-Free Items, and quizzed them about, why not educate myself a bit. What I learned was, ... tests are seldomly accurate and usually always wrong, which I have to tell you, ... Is very comforting (lol), also, Gluten-Free items? Expensive, wow, about 6.00 for Rice-Bread and such, ouch.

I have no knowledge about this, "Celiac" thing, I think Gluten in general is what - a form of something created to "glue" things together, like bread and what not, but ... It seems Celiac is - Wheat? Or so? it's even more or something, I was ringing through a customers items and glanced at the ingredients on their Soy Sauce - Low and Behold, "Wheat" who would of thought??

I hope Rice isn't bad, ... I love Brown Rice, Uncle Bens .. But if it's a whole grain, is that bad? Are grains? .. No idea, ..

I also should mention I take Protein Powder almost daily with 1% Milk, sometimes Skim, sometimes water. My brand is Optimum Whey Gold Standard and I will be receiving a Casein version for slow digesting in a bundle pack I got off bodybuilding[dot]com.

I read that because of Celiac or such affiliated, causes other symptoms or diseases including lactose intolerance, I have tried Lactancia actually, for a week or so (my Aunt is lactose intolerant) and with the sickess I had, I gave it a shot, seemed to make no difference to me.

Anyway .. I am not sure where I was going with this post, it started off with thanking you guys for your encouragement and I got side-tracked into 21 questions, and then some.

Thanks! I will update when I get results, but I assume they will come negative as that tends to be the experience. I know I don't have some unknown disease, it's just ... not acknowledged as to what it is yet, and I am hoping for an answer.

[psawyer]

I hope Rice isn't bad, ... I love Brown Rice, Uncle Bens .. But if it's a whole grain, is that bad? Are grains? .. No idea, ..

Welcome to the board.

Some will claim that all grains are evil. With celiac disease you must strictly avoid wheat, barley and rye. Some of us also react to pure oats, but most commercially available oats are contaminated with wheat from the production process.

Intolerances to corn and soy are not uncommon among people with celiac disease. Most of us can have corn, and many of us can have soy.

Rice is a grain, but the vast majority of people with celiac disease can eat it without problems. The protein in rice is quite different from the ones in the gluten grains. The growing conditions for rice are so different from the other grains that there is no risk of contamination from crop rotation.

[psawyer]

Most, but not all, soy sauces contain more wheat than soy. There are wheat-free soy sauces available. In Canada, VH produce a large number of gluten-free sauces, including a soy sauce which I like. VH is a ConAgra brand, so any gluten will be clearly listed on the label.

[squirmingitch]

Here is some info. for you:

Celiac disease is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the finger-like villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream, which can lead to malnourishment.

Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer.

Open Original Shared Link

And read this:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

And ask any questions, any time. There are no stupid questions here.

[Lisa]

Celiac disease is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye.

That quote may be misleading and confusing.

The TRIGGER for Celiac Disease are varied. Those diagnosed with Celiac Disease react to gluten.

[MitziG]

I think we ALL can relate to your situation- welcome to the club. find otu the specific names of the tests that were run- most doctors do not do a complete celiac panel. Get a copy of the labs, and post your results on here, we will point you in the next direction.

Time to stop waiting for drs to figure out what is wrong and take charge of your own health. No matter what the tests say, try the gluten-free diet. Many people get false negative results, and many are gluten intolerant which causes the exact same problems, but will not show up on any test.

You can get better, and achieving good health is the best response to all the people who never believed you were really sick!

[NoKittyNo]

I am expecting a negative, but if So I will still try a Gluten-Free Diet, I mean, what else have I got to lose?

Also, luckily for the most part my family is supportive, sure they thought me crazy sometimes, but now my moms onboard with it, and was the one who linked me to the Celiac Symptoms thing as I was lying on the couch after being severely sick, and she made the appt. with my Family Doctor (Who also thinks I may be touched in the head" he remarked:

"So you've seen a urologist, ... Gastro(...), etc. I think you've seen every specialist in the province!"

But he's a nice guy though, super nice and has sent me to all those specialists, but with no definitive answers I think he is tiring of my appointments, Lol.

So, we'll see how it goes.. I just hate making appointments, my last one (yesterday) was for 5:15, when did I see him? ,... 7:15pm.. Yeah, sick in the waiting room, reading on my iphone ignoring the stabbing, clenching pain in my stomach.

Anyhow! We will see...