FINALLY! A call from the GI doc's office (8/22) and the nurse tells me "it looks like you may have a mild case of Celiac Disease; try a gluten free diet for a few weeks to see how you feel." LOL
I asked her to send me a copy of my results for my records, which arrived yesterday (8/25).
I was thinking that since this office didn't seem to know much about Celiac Disease, that maybe they didn't really know how to interpret the test results, and that by looking at them myself I'd see definitive proof.
Not so much.
They ran a Celiac Disease Comprehensive Panel, a Celiac Disease HLA DQ Assoc., and also Folate, Serum, and Vitamin B12 tests.
So the Celiac Comprehensive panel shows normal. I have one of the genes, and high folic acid. What the heck does this mean?
I was still eating gluten when the blood draws were done, but I would have to say it was more of a 'gluten light' diet, as I do tend to steer away from the foods that I suspect are making me ill. So perhaps these are false negatives?
The labs were sent to LabCorp, and I have read over and over that Prometheus and IMMCO are the best labs to send tests to since they know what to look for. Could that be the problem?
Or do I now face the fact that I do not have celiac disease, and start over from square one to figure out what is wrong with me?
My GI doc was ready to label me as IBS after my colonoscopy, until I pushed for the rest of the celiac disease panel, that is.
I plan to continue with the gluten-free diet, but if I'm not Celiac, I fear I will let myself cheat, thinking "oh it won't hurt me, I'll just have a tummy ache" (even though that's not all that happens).
I'm just really at a loss here..........I want to be well, and stop spinning my poor, tired, achy wheels.
I had a follow up with my GI doc on Thursday, and he said that everything is 'normal' (colonscopy/biopsy, stool samples, blood work). We talked about the high values on some of my previous blood results and he said it was really nothing to worry about, but that we could do testing for B12/Folic acid levels.
I pushed for the rest of the Celiac Panel blood tests, and his response was that the TtG IgA was the most sensitive, but that we would go ahead and do the rest of them anyway. (Gee, thanks. Why didn't we do them all in the first place?)
He also mentioned gene testing, but that he'd have to research it since he didn't know much about it.
His MA came in to do the blood draw, and told me she thought she'd just go ahead and take two vials of blood since she didn't know how many they needed - they'd never ordered these particular tests before.
This tells me that this doc A) has never dx'd or possibly even treated a Celiac patient before and he's not terribly knowledgeable about it.
So I sit here waiting for test results. Feeling worse. Not so much in my gut, although that has been somewhat troublesome over the last few days (as usual). Now I have something new. Joint pain.
It started a week or so ago with me waking up one morning with my jaw locked into place (right side). I had TMJ in my late teens, but it was primarily the left side that was affected, and it never hurt like this or locked up completely.
After some gentle maneuvering and a loud pop, I managed to unlock it and get it moving. It's been painful ever since, and has locked momentarily on a daily basis - I'm always able to get it moving again with a little help.
Knees and hips are not happy either. There's been what I would call a low grade pain in both knees and both hips for probably two weeks now. But yesterday? Yesterday was BAD. I felt kind of like a 98 year old woman might feel - or maybe I could liken it to being hit by a truck? I don't know, I just know it HURT. And the pain felt like it was deep in my bones.
I fell asleep around 4pm yesterday afternoon, and napped off and on until around 10pm. Then I got up, ate something, and went to bed and slept until around 9:30 this morning. We're looking at almost 16 hours of sleep!
When I got up this morning, my knees & hips were only slightly pained, but the lower half of my back felt like my vertebrae were fused together.
I've also been running a low grade fever for at least a week. Haven't seen it go above 100.1, so I don't know how concerned (if at all) to be about it, but it seems too coincidental that all these things started happening at about the same time.
I also feel like my brain fog is getting worse. I've noticed I'm having trouble with remembering words for things. Things that come up in regular conversation. I'll go to ask my husband or my daughter "Do you seen the.............." and can't remember the word for the thing that I'm looking for. This morning I started a cup of coffee without putting the cup under the spout (single serve coffee machine). I just stood there and watched it pour into the drip tray.
My husband is actually encouraging me to start the gluten free diet (tomorrow), but I feel like I should wait to make sure my GI actually ran all the tests this time around. But part of me just doesn't care. I just want to feel better.
I don't know if my husband actually thinks it will help me to feel better, or if he's just tired of hearing me complain.
I'm trying not to complain at all around him, because I feel like he doesn't want to hear it and thinks I'm being over dramatic, but it's not easy.
I'm rambling.......so I guess that's it for tonight.
Got a phone call from the GI doc's office with test results from the stool samples and my colonoscopy biopsies.
"Everything looks normal; no indication of parasites or colitis. Follow ups are usually scheduled for 4-6 weeks after the colonoscopy."
HUH?? All we've done is rule out some pretty bad stuff (for which I am quite grateful, don't get me wrong!).
I still feel like crap, and now I need to wait 4-6 weeks before we talk about anything else?
I pushed for an earlier follow up appointment, telling the nurse, well we still haven't figured out the problem.
She found me a slot for next week.
So I'll be asking for the remainder of the Celiac Panel bloodwork to be done.......but I don't know what else from there.
I'm debating going back to my primary care doc to have additional bloodwork done to check hormone levels and vitamin/mineral levels.
But maybe that would be wasting my time. Maybe I should just go back to gluten free and be done with this needle in a haystack hunt.
Mine is wearing thin. I still don't have test results from the stool samples, and don't expect biopsy results until early next week sometime. It's been really hard to sit around and NOT dwell on the possibilities.
And if those come back negative, what next?
I still need to address having the rest of the Celiac Panel done (they only tested for tTG IgA), but other than that, and asking about some of the 'high' reports on my CBC, I'm not sure what the next steps are.
I just know I'm not feeling any better.
Gas, cramping/abdominal pain, and bloating have been present every day since the scope, in varying degrees.
Night sweats have been prevalant this week - actually had to get up and change my night clothes twice this week.
I tell ya, I'm ready to call it quits on the testing and just go gluten-free again. And I haven't even been through that much compared to some here. I don't feel like I can give up on the testing just yet though. I'd like to have vitamin deficiency and/or allergy testing done if I can get the doc to do it. I guess I'm just tired of waiting, and not knowing.
I don't feel like I've gotten anywhere with this stuff.
Sorry for the pity party.........I'm just tired and frustrated.
This is intended to show the lighter side of my experience with having a colonoscopy. Please bear in mind it was NOT funny as I was going through it, but in retrospect, it's hilarious to me. I hope you find amusement in it as well.
First of all, let me say that I was terrified - TERRIFIED - of having this done.
Other than a skull fracture when I was 4yo and having a baby, I've never been hospitalized or had any type of procedure done for anything. So I was freaked out about the prep. I was freaked out about the anesthesia, and I was freaked out about the procedure itself. And now I feel a little stupid.
In preparation for this, Sunday's diet consisted of coffee, water, Sprite, apple jello and chicken broth. Oh, and somewhere in there was a lemon flavored italian ice thingy. Mmmmmm.........good. [sarcasm]
The hubby and the kid had Long John Silvers for dinner and ate it in front of me. Now I'm no huge fan of the greasy-everything-tastes-like-fish food there, but I never wanted that greasy-everything-tastes-like-fish food so bad in my life. I was STARVING.
Then came MoviPrep.
Whoever posted that "[url="http://www.glutenfreeforum.com/index.php?showtopic=49017"]Funny Rendition of a Colonoscopy[/url]" on the boards here - that guy that wrote it had it exactly right.
When I picked up this prescription from the pharmacy, I didn't exactly think microwave oven, but 'chinese takeout for a family of three' sure did cross my mind, and not because I was hungry.
I mix up my first dose of MoviPrep. You never realize how much liquid 1 liter really is until you have to down the whole thing in an hours time. I thought I was going to float away.
And no sooner did I finish the last swig of that first liter of swill, I was running - RUNNING - for the bathroom.
And I didn't come out of there for more than ten minutes at a time until well after midnight.
The reference to 'rocket launcher' in the above story is absolutely correct.
I somehow managed to finish the second liter of MoviPrep, but still couldn't come out of the bathroom for more than 10 minutes or so at a time. (Incidentally, I discovered that MoviPrep used to have another name - GoLightly. Someone decided that was a terribly inaccurate name for it and changed it.)
I'm exhausted and want to sleep. But I'm scared to. There was so little warning of needing to visit the bathroom, I was terrified of falling asleep in my own bed. I was sure if I went to sleep, I wouldn't wake up until it was too late.
(I even had some concerns that I might have a problem in the operating room while I was knocked out, and envisioned my doctor in a big biohazard suit - my family got a giggle out of that when I shared that with them).
So I lay there, watching TV until around 2am, and decide if I have any hope of getting up in the morning on time that I better go lights out. With only one more visit to the bathroom at around 3am, I somehow made it through the night, and even got a little bit of sleep.
Night. Ha. I was up at 5:15 to get ready to go to the hospital. That wasn't even a nap for me.
So.........I get all checked in for the procedure and go in to prep. I put on the stupid gown that allows easy access to your backside and settled onto the gurney. I was given a heated blanket (a nice touch, since it was COLD in there) and a lovely pair of no-slip socks (mint green colored, in case you're wondering) and jabbed with an IV (back of my hand - OUCH). Oops! Almost forgot about the lovely hair cap! I was stylin'.
I get wheeled into the operating room and see the gigantic monitor (couldn't see what it was displaying really, as I had to leave my glasses behind and I'm fairly blind without them) and thought "That's almost the size of my living room TV - why do they need to see my innards THAT big?"
The doctor announces he's ready, and a nurse says to me "You're going to start feeling like you've had one too many margaritas" to which I replied "I already feel like that......" And I was down for the count.
Don't remember a THING until I woke up in recovery, and even some of those details are sketchy.
After waking up, I am told that everything looks fine, except that I have internal hemorrhoids (gee, wonder why that is? MoviPrep maybe??? Constipation? Diarrhea?) and that the doc took a couple of biopsies to have them checked for microcolitis.
They presented me with some after care instructions and some lovely full color pictures of my intestines and colon. Jackpot! I think I'll have these framed! Or maybe I'll put them in a scrap book.
I came home, ate some breakfast (NO, not Long John Silvers, silly) and laid down to watch TV. I guess the anesthesia hadn't completely worn off, as I fell asleep while trying to find something to watch (or at least that's what I'm told). I woke up about five hours later because no one was answering the stupid phone. If the phone hadn't rung, I might've slept all day and all night.
Around 5pm, I started having gas, bloating and abdominal cramping (and something that might be what an ice pick in your gut feels like, where I presume they took the biopsies from). It got so bad, I had trouble walking, and even trouble sleeping through the night.
Today I feel pretty decent. Minor bloating and cramping, but also some major D - a side effect of the MoviPrep (aspartame is NOT my friend - I'll probably be like this the rest of the week).
So, it's time for more waiting. Still no stool sample results yet, and should have pathology report early next week.
The cruddy thing about this? I never actually got margaritas.
Blood test results.......(drum roll)...............normal.
No further details on what normal means or what all they tested for.
I'm going to swing by tomorrow and pick up printed copies for my records and see what exactly they tested for.
Stool samples were dropped off on 7/21 so still waiting on those results.
[b][size=4]UPDATE:[/size] [/b]I got the printed copy of the results.
It doesn't appear that they ran the entire Celiac Panel. All that shows up on the test results is:
[b]t-Transglutaminase (tTG) IgA 1 (Negative 0-3)
[/b]So I guess I'll be calling them to find out why the others weren't run, and to find out what I need to do to get them run.
In other blood work news:
Everything was NOT normal.
I have high Hemoglobin, Hematocrit and MCV. After a Google search to figure out exactly what this means, I've discovered that the high Hemoglobin and Hematocrit are likely due to me being a smoker (yeah, yeah.........no lectures please).
The high MCV, however seems to indicate [b]macrocytic anemia[/b], due to deficiencies in B12 and/or Folic Acid. Either because of malabsorption or too little ingestion of them (I'm thinking it's the former).
So..............how is this NORMAL?
A bunch of the other test results are on the high end of 'Normal'. So I don't know what to think of those.
I'm more than a little peeved, though. If the lab found these things to be high, and labeled them as such, I just don't get how the doc's office thinks it's ok. Is it because they look at these things day in and day out and it all starts to look the same? Is it because even though the lab calls it 'High' they've seen much worse so it's not a big deal? Ugh.
Today was my visit with the GI doctor.
I think I like this guy. He asked a lot of questions, and took a lot of notes.
I told him that there's a history of IBS in my family, as well as Diverticulitis and Ulcerative Colitis. I also told him that I'd been 'diagnosed' with IBS about 8 years ago. He asked me "How were you diagnosed?" I must have had a funny look on my face, because he then asks "Were there any tests run?"
I said, "No, she listened to me for about five minutes and then said 'Oh you have IBS' and handed me a prescription for Zoloft."
His response: "We're not calling anything IBS until we rule out everything else."
So they collected blood samples, sent me home with a stool sample kit and scheduled me for a colonoscopy (7/28).
There are some really foul jokes that come to mind about the stool sample collection kit, but this is a family community, so I'll keep those to myself.
(I'm a little behind in posting, so this has been backdated.)
So I saw a doctor today. He seemed really receptive to the things that I was telling him, but he said to me "well if you think it's gluten related then stop eating it for a while and see what happens."
I asked him about the possibility of that affecting test results and he says "Oh they can still run the tests."
So obviously he doesn't know much about Celiac Disease testing, or the disease in general.
We did no testing of any kind.
He referred me to a GI and handed me a script for SYMAX, which I can't take. It's got sulfates in it, and I am deathly allergic to those.
The funny part of that? We'd discussed that RIGHT before he wrote me the script.
Needless to say, I'm not filling that or taking it.
Let's hope the GI works out better. I have an appointment set for the 7/16.
Six days back into a glutenous diet, and last night I wanted to die. With a capital D.
I ate a ceasar salad for dinner that had chicken, feta and parmesan cheese, portabella mushrooms and croutons. I also had a couple slices of foccacia bread with asiago cheese on it. Within 30 minutes of finishing dinner, I had a stomach ache. Within an hour, it felt like there was a knife twisting around inside my stomach. By 11pm, it was lower abdominal pain and it was BAD. I felt nauseous, was freezing cold (body temp was slightly above normal), had a headache and back ache, and I wanted to crawl into a hole and die.
This morning, I woke up feeling like I hadn't eaten in a week.
I just want it to stop.
Dr's appt is tomorrow. Pray he listens and takes me seriously.
I felt better today than I have in years. My mind was clear and I could actually concentrate on something for more than a few minutes.
Absolutely no gas or cramping, and I had more energy too. The only kink in the chain today was that Auntie Flo is in town so I had my usual back cramps and a slight headache. I had bad night sweats again last night, despite having the A/C set at 75 before going to bed. That makes three nights in a row that I got up in the middle of the night to change out of a soaked tank top.
I talked to my husband some about going to the doctor and having tests run. He still seems skeptical that celiac disease could be the cause.
I rattled off a ton of symptoms and told him that they could all be related to celiac disease. Some of it he seemed to believe, but some of it not.
He's all for me going to the doctor, but he thinks that I should take whatever the doc says as absolute truth. This from a man that won't go see a doctor for anything. *sigh*
So in preparation for doctor's visits, I started back on the gluten tonight. I think I'm already feeling it, too. My brain feels fuzzy, and I keep having this weird muscle twinge in my upper chest. I have the beginnings of a headache (but that could be from only having one cup of coffee today) and I'm feeling sleepy.
I have a feeling that tomorrow is not going to be a good day.
[b][i]Edited to add:[/i][/b] It's now 11pm and I feel sick. The cramping and bloating has begun.
Wish me luck.
Being gluten free seems to be helping with my issues. I felt pretty good today. No stomach cramping or bloating, just a bit of C - but I actually went to the bathroom today, and that's a major accomplishment sometimes! (Ok, TMI, but pretty much everyone here goes through this, right?)
After doing some more research here, I've realized that my cystic acne issues popped up at about the same time my GI issues did. I'm thinking there's a connection, although I can't say I've seen an improvement in my skin over the last few days. I've also realized that the itchy scalp I've endured for the last few years could also be related.
So, now I face glutening myself again, so that I can run the gamut of tests with my docotor. Eek.
I thought I would add some reviews of the gluten free items I try. I know there are other blogs out there that do this, such as [url="http://www.glutenfreepost.com"]glutenfreepost.com[/url] (and they seem to do an excellent job) but I thought I would do this just in case there are any other people out there that have 'texture issues' like I do. (If you don't know what that means, then I'm guessing you don't have it - I can try a protein bar and love the flavor but have a major issue with the texture - too cakey, too gooey, etc - which will prevent me from ever eating that particular bar again. Yeah, I'm weird. I've learned to live with it. ) Reading reviews of how great protein bars taste does me no good if there's no description of the texture, and I often waste money looking for the elusive perfect protein bar.
I was really skeptical about this, but I decided to try it anyway. And I was pleasantly surprised.
I also picked up the Chocoloate Coconut, and was also surprised, but not so pleasantly.
But let's talk about the Banana Cookie first.
The texture is strange, but not inedible for me. It's almost cake like, but not. It's made out of dates, almonds and bananas, so imagine eating those three things mooshed up together and there you have it.
LARABAR: Chocolate Coconut
This was really not what I expected. I was fine with the texture, but the chocolate taste was really more of an unsweetened baker's chocolate taste (and if I'd bothered to check the ingredients, uhm, that's exactly what it says on there!) Not what I'd call yummy.
Other LARABAR flavors I'd like to try: Cinnamon Roll, Peanut Butter Cookie & Coconut Cream Pie
This company also makes JOCOLAT, which has 'organic chocolate' instead of unsweetened chocolate, so it's supposed to be more like a brownie.
I'd like to try the Chocolate and Chocolate Coffee in these.
[font="Tahoma"]It's already been a long beginning, but it's about to get longer.
I'm not diagnosed celiac disease or even gluten-intolerant, but I've done enough research to suspect that one of these things is what's wrong with me. I plan on using this blog as a way to gather my thoughts in one place, maybe keep a food journal and review various gluten-free products I try, as well as, hopefully, help someone else along the way. It's a scary, lonely road (mine has been, anyway) and if I can reach out and help even one person deal with similar experiences, then this is all worth it.
The story begins.......
It was about seven years ago that this all started, I think. It may have been longer, but honestly, I can't remember that far back since my brain doesn't work like it used to.
In late 2000, I started getting upset stomachs, crazy mad gurgling (if you have this, you know how terrifyingly embarrassing it is to be in a staff meeting, have the room go quiet all of a sudden, and your stomach picks that exact moment to make a statement!), and yes, the big D. We're talking six or seven times a day. I thought, well maybe it's the powdered creamer I've been putting in my coffee.......so I weaned myself off of that gradually, but never really felt any better. I started feeling really tired all the time. Depression came and came hard. I started sleeping way too much - partly from depression I'm sure, but also because I just felt exhausted, even after sleeping 12 hours.
The depression was getting bad, so I finally went to a Dr. I swear I wasn't in that Dr's office more than five minutes before she said, "Oh it's IBS" and handed me a prescription for Zoloft. Huh?
Ok, so who am I to question an MD? Someone who had spent years going to medical school and surely knew WAY more than I did, right? So I filled the prescription for Zoloft and prayed it would help.
It seemed to help with the depression - I mean I *think* it did - I didn't really care about anything while I was on it.
I stayed on it for about a year, and after that weaned myself off of it (which was a little scary in and of itself).
By this time, my family and I had moved to a new state due to a family crisis. The stomach issues hadn't improved at all, and by this time I was actually bouncing back and forth between the big D and the big C.
But the crazy thing is, I never really realized that there was something wrong. You don't tend to spend a lot of time discussing bowel movements with family and friends, so I never realized that what I was going through wasn't normal.
Somewhere in here, I started dropping weight but didn't realize it. It wasn't until one day in summer (?) 2006 that I stepped out of the shower and stood in front of the mirror wrapped in a towel to brush my hair that I really realized - I looked like a skeleton. I could count every single bone in my chest from my collarbone down to the last rib. Upon further inspection, my hip bones jutted out where there once had been a decent amount of fatty tissue. (I've always been fairly small - 5'2" and about 120-135 lbs, always had a high metabolism, but never really fretted about my weight.) I stepped on the scale. 100 lbs. I pretty much freaked out. I hadn't weighed 100 lbs since junior high! I resolved to start eating better and put some dang meat back on my bones.
Fast forward to October 2007.
I still wasn't feeling all that great - some days were just ok, while other days were just BAD. I started having daily headaches that seemed to start at about the same time everyday - late afternoon. If I didn't catch them in time and down some ibuprofen, they'd turn into full blown migraines and nothing but a really long nap would make it go away.
One day I had this really weird dizzy spell - or at least that's the only thing I can think to call it, but it really didn't feel like dizziness at all.
It felt like there was a hive full of angry bees inside my head. Talking aggravated it. Sitting down aggravated it. Laying down on the floor aggravated it. And then it was gone. It lasted only a few minutes but it felt like an eternity.
My sister happened to be visiting and was standing right next to me when it happened and she could definitely tell something was wrong. (Maybe it had something to do with me being mid-sentence when it hit, and I just stopped talking.)
She was slated to leave to go home in a few hours, and she didn't want to leave me alone. I told her I would be fine and that it must've had something to do with blood sugar levels (even though I'd eaten breakfast that morning, when normally I'll have a cup of coffee and not eat anything until mid-morning). It happened again about thirty minutes later, only it was much shorter in duration. She left town, and I was fine the rest of the day, except that I was super tired.
The 'brain buzz' happened a total of two more times before I could get into a Dr's office - once while I was driving which scared the ever loving daylights out of me!
Finally I get in to a Dr's office, and tell her about my head aches and my 'brain buzz'. She orders some blood tests and an MRI "just to be safe" - but then proceeds to tell me that she thinks that I'm just "running on empty and you should eat better and get more sleep". The MRI showed no abnormalities. The blood tests came back "within normal range". I don't even know what all blood tests they did, but I do know that they checked for anemia and diabetes.
Ok, so everything looks normal. So I must be crazy then. There's nothing wrong with me.
The depression worsens, and now let's add some anxiety into the mix. I spend the whole day feeling anxious, over what I don't know. I can't seem to function all that well. I have lots of trouble remembering things. My stomach cramping is getting worse - not in the frequency but in the severity of the attacks.
My sister, bless her heart, has had digestive issues for years and years, and ended up having her gall bladder removed. She still suffers with some digestive issues, so that obviously didn't solve the whole problem.
She suggested to me that I get tested for Celiac's Disease. I sort of brushed it off for a while, but just recently I started doing some research on celiac disease. I found celiac.com and started reading the forums. And I finally joined.
Reading about other people's symptoms is really helping me to put some pieces together in my own story. It's made me think of things that I thought were just oddities, but I see now could be connected to one, much larger issue.
Yesterday, I started a gluten free diet to see what happens. Today, I feel pretty good. Better than I remember feeling in quite some time, anyway. So I'll keep up with this for a bit and see how it goes, realizing that if I'm going to go the doctor route again in an effort to get a diagnosis (and really, I need to, I have a daughter that deserves to know and be prepared for what may come if it's celiac disease) that I'll likely need to re-gluten myself for testing purposes.
So in a nutshell, here's the pieces of the puzzle that I'm starting to put together:
[*]Lower Intestinal Stomach Cramping - sometimes to the point of not being able to move
[*]Mood swings and irritability (drastically worse with PMS)
[*]Stiffness in Neck and Back
[*]Crazy Stomach Gurgling
[*]Weight Loss & Inability to Gain Weight
[*]Heartburn & Occasional Nausea (esp after eating things like pizza or pasta)
[*]"Brain Buzz" or Dizziness
[*]Loss of Hearing (saw ENT in Nov '07 who said nothing was wrong)
[*]Lack of Coordination, Increased Clumsiness
[*]Constantly Feeling Cold
[*]Loss of Libido
[*]Occasional Hot Flashes
[*]Muscle Cramping in feet & calves
[*]Lack of Concentration
[*]Itchy Skin & Scalp - no noticeable rash, but what looks like acne on upper arms, thighs, back and scalp
[*]Feeling Dehydrated Often
I don't know if they're all related or not, but that's what I'm here to find out. [/font]