Tue, 26 Aug 2008 23:06:25 -0700 info@glutenfreeforum.com (Gluten-Free Celiac Disease Forum at Celiac.com (Home)) IP.Blog 60 Diagnostics 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.

Test Results:
Deamidated Gliadin Abs, IgA.......1.2 (range 0.0-10.0)
Deamidated Gliadin Abs, IgG.......0.7 (range 0.0-10.0)
t-Transglutaminase (tTG) IgA.....0 (negative 0-3)
t-Transglutaminase (tTG) IgG.....1 (negative 0-5)
Endomysial Antibody IgA............Negative

Immunoglobulin A, Qn, Serum......199 (neg 70-400)
Folate (Folic Acid), Serum..........>24 (ref. int. >5.4)
Vitamin B12.............................634 (ref. int. 211-911)

Celiac Disease HLA DQ Assoc
DQ2 Negative
DQ8 Positive

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. ]]> Tue, 26 Aug 2008 09:02:00 -0700 Diagnostics 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.]]> Sun, 10 Aug 2008 20:27:00 -0700 Diagnostics "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.

*SIGH* I don't know what to do..........]]> Fri, 1 Aug 2008 15:01:00 -0700 Diagnostics 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.

TTFN]]> Thu, 31 Jul 2008 22:04:00 -0700 Diagnostics
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 "Funny Rendition of a Colonoscopy" 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.

Sunday, 5pm
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.

Sunday, 9pm
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.)

Sunday, Midnight
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. ]]> Tue, 29 Jul 2008 12:03:00 -0700
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.



UPDATE: 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:
t-Transglutaminase (tTG) IgA 1 (Negative 0-3)

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 macrocytic anemia, 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.

Colonoscopy is next. Wish me luck.]]> Wed, 23 Jul 2008 13:44:00 -0700 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.

So now I wait.]]> Wed, 16 Jul 2008 13:33:00 -0700
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.]]> Tue, 8 Jul 2008 13:33:00 -0700 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.]]> Mon, 7 Jul 2008 09:18:00 -0700 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.

Edited to add: It's now 11pm and I feel sick. The cramping and bloating has begun.
Wish me luck.]]> Tue, 1 Jul 2008 19:24:00 -0700