Results Pending

[Tricia22]

Hi Guys...
So after a few months of feeling really crummy GI-wise, and basically being a textbook case for celiac lately (including some of the more rare symptoms associated with celiac like depression, missed periods, and stuff like that) my blood is at the lab awaiting analysis. I had blood drawn last week Thursday, so I'm expecting results any day now... hopefully sooner rather than later. I had an aunt with celiac, and my brother was on the high side for antibodies but is not quite at celiac yet although they say it's basically inevitable for him to develop it by the time he's in his early 30s (he's 25 now) so... YAY... I'm not a happy camper about this strong possibility, but it will be nice to hopefully have an answer and be able to start feeling better.
Anyway, please keep me in your thoughts and prayers during the PAIN of waiting for test results...Thanks guys!!

[StillMamamia]

(((HUGS))) I hope you get your answers soon. I cannot imagine all the hardships you're going through.:(

[GAmom]

Sorry you're going through this!

[jcanolson]

I hate the waiting for results!! Hope you hear soon, and get good news!!

[Tricia22]

The original test results from the antigliadin and transglutaminase antibodies came back negative for celiac, but with all the symptoms, and the endo. not seeming to give a dern, I made an appt. with a well-known local gastroenterologist for Monday, 10/27. That's supposedly the soonest they could get me in, but I forgot to ask to be put on the cancellation list, so tomorrow I will call back and BEG for a sooner appt. or at least to be called if someone cancels and I cen get in any sooner... I am MISERABLE lately... I hate the whole.... you have to keep eating gluten for accurate lab results sven though it makes you feel really gross thing... it's like some kind of cruel and unusual punishment... NOT FUN!
Thanks for all the well-wishes, and I will keep you all posted...

[aklap]

Tricia,

I will agree the testing protocols for CD tend to suck at times. Actually I take issue with how narrow the gluten sensitivity spectrum is viewed - but that's another post ;)

Unfortunately, it sounds like you taken another step closer to "No Wo-man's Land". This is a place where you are a medical misfit. The testing shows that you don't you don't fit the current criteria for CD, but yet you still have symptoms. Doctors scratch their...heads...and say everything is normal, but yet you still feel like garbage.

One problem with being a medical misfit is that you live outside the realm of what they know. You tell them gluten causes you problems [without an official diagnosis of CD], they tend to look at you like you have 3 heads. How do I know this? I have a permanent mailing address in No Man's Land. My initial incomplete Celiac blood work: negative [I was doing GF trials at the time]. My biopsy: negative. I had a neurologist that would actually listen to me. He would run the entire CD panel per my request [no other doc would do it]. I was determined to get an official dx. This meant I had to go back on gluten full time. So, I started out on my 6 week long gluten challenge. Symptoms started coming back, I didn't want to go thru another 6 weeks of "the walking dead" [1.5 years was enough thank you very much ;)]. I called off my challenge after 5 days. If removing gluten was the key to getting my life back, so be it, I'll make it so.

You have 2 options.

1) Continue with medical testing and try to get an official dx.
2) Call off testing, go GF and see what happens.

If you take option 1, you still may not get an official dx and you wind up taking option 2 anyway. At least you've gone thru hoops and ruled out other medical issues.

It's possible you maybe one of the 20% that is sero-negative (http://ezinearticles.com/?Diagnosing-Celiac-Disease-and-Gluten-Sensitivity&id=239028). Perhaps you have something less than total villous atrophy. tTG tests are great a picking up large amounts of damage, but is less accurate when there's less damage. Whether or not a GI will do an EGD to get the biopsies, it's hard to say. Perhaps if he/she is well versed in CD and based on your sx's, they just mightbe willing to do it. If it's not offered to you, you might ask about the likelihood of sero-negative CD.

I guess in my long-winded manor, I'm trying to say...try to get an official dx if at all possible. Go as far as you are comfortable [or financially able]. If all testing comes back negative, then seriously consider doing a GF trial if you haven't done so already.

Good luck in your quest for health!

[momto2]

Tricia -

Did you have your appointment on the 27th (or sooner)?

Although I have had not had the bloodwork, I'm waiting on results of a biopsy from last week -- supposedly I am not supposed to call until next Monday - almost 2 weeks after the biopsy, to get results.

So I understand the pain of waiting for this! I hope both of us get answers soon!

[Tricia22]

Tricia -

Did you have your appointment on the 27th (or sooner)?

Although I have had not had the bloodwork, I'm waiting on results of a biopsy from last week -- supposedly I am not supposed to call until next Monday - almost 2 weeks after the biopsy, to get results.

So I understand the pain of waiting for this! I hope both of us get answers soon!

I had my appt. 10/27, and the doc's thinking 1) gastroparesis, 2) celiac, 3) inflammatory bowel disease of some sort or another, or 4) some combination of those. I had lots of blood work drawn, and am awaiting the results of all of that, and I have also scheduled an upper GI scope for 11/21, and sometime before that scope, I need to have a nuclear medicine gastric empty study done to see about the gastroparesis idea... endo.'s thinking gastroparesis and celiac are the most likely... I'm just not having a very good week with all of this... physically or mentally, and I can't wait to ahve answers.... ugh!