Introduction And Some Questions

[jstanton8]

Hi everyone. This is my first post here. My name is Julie and I have been miserable with a mysterious illness for the last three years. Within two weeks of the birth of my youngest child (three years ago), I started having terrible diarrhea every time I ate. I also experienced a phantom amonia smell frequently. Most distressing, I started getting terrible flu like symptoms (aching all over, feeling almost too sick to get out of bed) for no apparent reason. It seemed at first to occur every two weeks or so, so I thought it had to do with hormones. After some time, the flu like symptoms seemed to occur every day as well as the continued diarrhea. I've also developed a severe aversion to the smell of bread, straight out of the bag or even worse - toasting bread. I'd always loved that smell before! This last 6 months or so, I've had tons of gas and stool that is yellow/tan and floating. A couple years ago, I went to an endocrinologist, who told me that my symptoms were probably "in my head." I went to a psychologist (I was thinking post partum depression). In response to my telling him I had no energy or motivation to do anything and was extremely weak, he told me "maybe you're just lazy" (no, I'm not kidding). I also went to my regular doctor many times, my OB, my normal GYN, all of whom were supportive, but couldn't figure out what was wrong with me. My most recent quest for health came with my visit to a nutrional doctor. As I've paid more attention to what I eat, I made a discovery. I was doing a cleanse where for a few days I ate only salad and a little chicken and I felt FANTASTIC - no flu sytmtoms. As soon as I went back to eating my normal way, the flu symptoms returned. I realized that within 30-60 minutes after eating (especially something like bread, pancakes, etc.) the terrible aching, feeling lethargic and exhausted, the muscle weakness, headaches and more would come on. Fast forward to last week, just before labor day weekend. I had DVR'ed Dr. Oz. I usually delete it because I don't have time to watch it, but this time, I started to watch. It was about Celiac's Disease. It hit me like a ton of bricks! I had every symptom on the list! After labor day weekend, I went to my doc. He ordered the Celiac panel as well as measuring my B12, Vitamin D, iron, etc. I was low normal on Vitamin D and iron, so I've started vitamins. The Celiac panel isn't back yet. I am SO nervous! I am desperate to stop eating gluten so I can feel better, but I don't want to stop until I have a diagnosis either way because once I stop gluten, I never want to go back to feeling this bad and I am terrified the blood tests will come back inconclusive or negative. A few questions:

1. I know this will vary by hospital and area, but how much did you have to pay for an upper endoscopy and upper intestine biopsy?

2. Was the procedure awlful or were you completely unaware of what they were doing?

3. How long does it take to get the celiac blood panel results back after you have it drawn?

4. Can just the celiac panel be diagnostic, or is the biopsy absolutely needed?

Thanks in advance for any info you can give me. I was interested, after reading another thread, to hear about someone elses ear pain. I've had severe ear pain in my left ear only for many many years. I've even gone to an ENT for it, but they found nothing. That ear canal has also been sort of raw inside when I use a q tip. It will be interesting to get my celiac results. When I do, I will post them here.

Thanks!

[hawkgirl98]

I just had the endoscopy and biopsy done in June and ended up paying around $200 out of pocket after insurance. I want to say the actual cost was around $1,000. The worst part for me was getting the IV with the drugs to knock me out because I HATE needles. Felt fine once I came to. They told me I might have a sore throat, but I didn't. Just felt a bit tired from the anesthesia the rest of the day.

For me, it took about a week to get the blood panel results. The endoscopy results they told me right after the procedure (everything looked fine) and they called me with the biopsy results about 3 business days later (had it done on a Thursday morning, got the call Tuesday afternoon).

I have a mixed opinion with respect to whether the biopsy is necessary. I got one because so many people I talked to told me I should. However, my dad, aunt and cousin were all diagnosed without having it done and they have all done well on the gluten-free diet. My biopsy came back negative, which very well could be a false negative. Given my family history and the fact that my blood test was strongly positive, my doctor and I decided it still made sense for me to go gluten-free.

[cassP]

oh we are very interested too- i love to see people's results... especially cause we all know so much about them- i hope your doctor ordered all the tests that should be done as many of them dont.

depending on your blood results- you may not need a biopsy. it depends on what you need for yourself really. it's good to have your doc check for other problems as well. for example: my insurance company would only allow me to get 1 procedure, not 2. i was in the mindset- that i already knew gluten was bad for me, so i opted for the colonoscopy- just to make sure there was no diverticulitis, or cancer, etc. all they found was 1 benign polyp and they removed it. im glad i had the colonoscopy! it eased my mind. the prep was a PAIN IN THE A.. but the procedure was easy.

im sure the endoscopy is a BREEZE, really. they put you under "twilight" and you really have no idea- they'll put the IV in you, and it will feel like 2 seconds later they're waking you up.

it can be pricey, depending on your plan (or no plan).. but u could always set up a payment plan.

but let's see your blood tests- you may not need a biopsy.

[Looking for answers]

The endoscopy was really uneventful for me. Went in, only requested twilight sleep. It was done very quickly, no pain, and my mom and I went to lunch afterward. Only issue was some lasting tiredness the remainder of the day. About the cost, mine was 100% covered under insurance...only paid for copay of $20.

I'm so sorry you've been told "it's all in your head." There are thousands on here, including me, that have heard the same. Good for you for trying to figure things out.

[jstanton8]

Wow - thank you so much for all of the quick and kind responses! When I got the blood test, the lab requisition said "celiac panel" and he had also written two other tests in, but I'm not sure what they were. He has true "doctor's handwriting!" I had the tests drawn on Thursday (the 9th). If I don't hear by this Thursday the 16th, I'm going to call them. My mom has a great gastro doc that I'm going to go ahead and make an apt with, even before I get my results, since it can take a while to get in with a specialist. I will let you know as soon as I get my test results! Oh, one other symptom I've had that I forgot to mention is tingling/numbness in my feet/toes for 4-5 months at least.

[cassP]

The endoscopy was really uneventful for me. Went in, only requested twilight sleep. It was done very quickly, no pain, and my mom and I went to lunch afterward. Only issue was some lasting tiredness the remainder of the day. About the cost, mine was 100% covered under insurance...only paid for copay of $20.

I'm so sorry you've been told "it's all in your head." There are thousands on here, including me, that have heard the same. Good for you for trying to figure things out.

AHHH im very jealous- what kind of insurance do u have??

[Cabins2]

Hi there,

I'm new to all of this. I have undergone some testing, have had 5 abdominal surgeries, and today I found out I am DQ2/DQ6. I have every possible digestive,as well as, some neurological symptoms of Celiac. My mother was diagnosed with late onset M.S. 3 yrs ago. Am I a Celiac?

[cassP]

Hi there,

I'm new to all of this. I have undergone some testing, have had 5 abdominal surgeries, and today I found out I am DQ2/DQ6. I have every possible digestive,as well as, some neurological symptoms of Celiac. My mother was diagnosed with late onset M.S. 3 yrs ago. Am I a Celiac?

you definitely have the genetic predisposition... but what about any blood tests????

and 5 surgeries???? omg, im so sorry- what a pain

[Cabins2]

you definitely have the genetic predisposition... but what about any blood tests????

and 5 surgeries???? omg, im so sorry- what a pain

Thanks. Yes, I'm 43 now, & the surgeries were from age 33 to 39. But, since I've been gluten & casein free since 3/2010, I've been feeling great most of the time. This site is what helped me to figure it all out. When I made it to my appt. with the Internest, he really did seem to take the time to listen. Except,...for when he ordered the blood tests/Celiac Panel to be done right then & there.--Even though I informed him that I had been gluten-free/CF for over 3 1/2 mos. already. The results came back only slightly elevated, so he called them "negative". Then, he had me have a Breath Lactose Test. Even though, during the 4 1/2 hr. test I kept running to the restroom with the big D, it also came back negative. So,...then he ordered Ova & Parasites testing on stool samples.--Also, negative. He referred me to a GI dr. who knows me well from the past abdominal stuff. He also listened & when I told him that I did not think that I could work full time & perform the Gluten challenge right now---'cause I know how it would end up (also, told him about my mother's recent diagnosis of M.S., and my teenage daughter w/Epilepsy), he said that we should just go for the genetic testing & if I decided to have the Biopsy fine; however, he pretty much said to just see how the genetic markers turned out. When the RN called me with the gene results, she told me that they were negative & to go back to eating gluten & dairy. I was incredulous, and did more research. Then, I called her back & told her to ask the dr. again because every 'Celiac' site I looked on says that I have the genetic markers for it. She got back on the phone & said, "Oh, the doctor says that you're right." Okay............

[cassP]

well, im not your doctor. and most docs think that ONLY DQ2 and DQ8 are Celiac genes... but DQ6 is another one that is a POSSIBILITY.. plus you have the DQ2.

anyways- again, i ONLY know that your genes make it possible. the REAL proof for you- is how you feel Gluten Free-

our poor medical community- they just dont know how to deal with this do they???

again, im sorry you had to have so many surgeries

[Cabins2]

Get this?!!!!! I am so glad that I asked my GI dr.'s nurse to send me the results via mail. I DON'T have DQ2/DQ6 at all.---I have DQ2/DQ8. Well, at least now I do know with more certainty. But,... I've lost some faith in the doctors in my area. Oh, well...at least now I know. I have an answer & I can move forward. I'm doing great with the gluten-free/CF diet & I feel really great!!!

[cassP]

Get this?!!!!! I am so glad that I asked my GI dr.'s nurse to send me the results via mail. I DON'T have DQ2/DQ6 at all.---I have DQ2/DQ8. Well, at least now I do know with more certainty. But,... I've lost some faith in the doctors in my area. Oh, well...at least now I know. I have an answer & I can move forward. I'm doing great with the gluten-free/CF diet & I feel really great!!!

i cant believe they were so nonchalant on the phone... and dismissive at first... geez

[Looking for answers]

Hi there,

I'm new to all of this. I have undergone some testing, have had 5 abdominal surgeries, and today I found out I am DQ2/DQ6. I have every possible digestive,as well as, some neurological symptoms of Celiac. My mother was diagnosed with late onset M.S. 3 yrs ago. Am I a Celiac?

Then it was a HMO through a major company I used to work for. It was wonderful. In fact, my insurance is still great. I guess I've lucked out.

[Looking for answers]

Get this?!!!!! I am so glad that I asked my GI dr.'s nurse to send me the results via mail. I DON'T have DQ2/DQ6 at all.---I have DQ2/DQ8. Well, at least now I do know with more certainty. But,... I've lost some faith in the doctors in my area. Oh, well...at least now I know. I have an answer & I can move forward. I'm doing great with the gluten-free/CF diet & I feel really great!!!

Yes, you'll learn that you have to be your own health advocate going forward. Try to educate yourself, stay in contact with others in your situtation (like us on this board!). I've had the best of luck turning my symptoms around visiting alternative medicine doctors (naturopaths, etc), but insurance doesn't cover them, so I pay out of pocket.

[T.H.]

I've had the left ear pain, too!!

Lots of weird tingly stuff that went down my arms rather than my legs. It was attributed to a partially herniated disc in my neck. However, off of gluten, it went away. I've only had one gluten reaction that I KNOW has been gluten since I went gluten free. When it happened, I suddenly had the ear pain, vertigo and dizziness, nausea and vomiting. So it definitely goes along with gluten reactions, for me, anyway.