Subscribe to FREE Celiac.com email alerts
dark-angel_warriore added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsFrustrated, Just Need To Vent.So I posted about a month ago regarding positive blood work, various symptons, and my fear of going through the endoscopy.
SOOO, I got it done last monday (a week and a half ago).
Everything went well, I thought I was asleep, but apparently I just don't remember being awake.
Anyways, I had a pleasant experience at the hospital, no complications. Though they sent me home about 10min after I regained concsiouness, without explaining anything to me.
I did not think to ask about how it went.
4 days after the Endoscopy, I get a call from the surgeon's office saying that the surgon would like to see me to discuss the procedure that was done, and that they would give me the soonest appointment (today, so less than a week after the phone call).
Because I am confused about what the surgeon would want to talk to me about, I called my family doctor (who ordered the endoscopy), to see if she had received the results.
Apparently she received the results last week, just put it in my file without contacting me, and closed it.
So the "nice" secretary told me " it is your reponsability to book an appointment to discuss test results".
It would be nice if I even knew the results were in!!!!!!!!
She said that my doctor "PROBABLY" put the results in the file without saying anything because it did not show anything important.
We wern't looking for anything "important" we were looking to confirm if it is Celiac.
So now they are giving me an appointment in a month, because they need to leave room for emergency appointments.
How is anyone supposed to appreciate doctors if they do things like that ?
Now I am confused as to why I am even taking time off of work and losing pay to go see the surgeon, and then losing pay AGAIN to go see my general doctor who does not seem that concerned.
I have been "gluten free" (My boyfriend forgets and always cooks gluten products along with my gluten free products (on the BBQ, on serving plates, etc...) and I have been feeling worse than I did 2 weeks ago.
I know I should just wait until the appointment with the surgeon tonight, since he probably also has the biopsy results himself
but I just wanted to say "grrrr"
- 4 replies
- 1,059 views
dark-angel_warriore added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsPositive Blood Tests, Not Wanting To Go Through EndoscopieHello,
I have been reading numerous posts prior to posting, and I know I am not the only one to go through this but I guess I am looking for people who actually have done it.
I live in Ontario and I am a 23 years old female (even though that does not change anything it sets in with the rest of the story).
Here is my story : After puberty, I started having fainting spells constantly... We did numerous tests, and all of them came back negative, expect for an iron deficiency which was unexplained. At that time I was 14-15 years old.
The years went on, other issues came up, at 17 I was diagnosed with unexplained infertility, my iron level was still very low. I had very long cycles (3 to 7 months), which often had to be triggered with medication.
After a 4 months treatment on Clomid, I became pregnant at the age of 19. Knowing that my chances to have a child were very low I decided to keep my son (nothing to do with the story either but I just wanted to point it out for the rest of the story as well).
I had a fairly easy pregnancy. But after having my son, I had an unexplained hemorrhage.
Anyways, after having my son things started going down, I was going through a really rough time, started losing a lot of weight (I was only 125lbs before I had my son, 115lbs a month after I had him).
Anyways after I had my son, I started noticing that I was dizzy very often, my vision was getting worse, I was always constipated (unless I drank beer).
I started consulting different doctors (mainly walk in clinics because I did not have a family doctor for myself).
One doctor told me that my dizziness was due to the fact that I stood up too fast probably (??????)
Another doctor told me that it was probably just the way I held my head (????????)
I kind of gave up at that point.
After consulting another doctor for getting the flu back to back without a couple of months. The doctor finally decided to do some blood work, Celiac wasn't tested then, but my vitamin levels were.
It came up that my iron was extremely low. I was put on 3 pills of iron a day for 3 months.
3 months later I finally had a family doctor. I got tested and my iron level was still low, but since the iron pills were making me sick (so I thought) I was told that my body could probably regulate itself since it was almost at normal levels.
About 6 months later, I went back to the doctor's for unrelated problems (so I thought), my doctor told me that my issues were more than likely due to stress.
We tested for my iron again and it was very low again, I was put on another 3 months treatment.
I never ended up going back to get tested because I was tired of doctor's excuses.
Then my boyfriend noticed that I was losing my hair, I had a bald spot the size of a tennis ball... I was FREAKING out.
I assumed it was due to a lack of vitamins, so I started taking vitamin supplements on top of the iron pills that I had been taking for about 5 months now.
By that time, the dizziness has gotten worse; I would faint after moving the bed, or taking 2 shovels full of snow, or even going up the stairs.
My hair had gown an inch in 3 years, and I kept having unexplained bladder issues.
My mind was always foggy, my vision had gotten worse, I had changed prescription twice within a year.
My stomach was always feeling upside down, but I blame that on the iron pills or my cycles.
I would go to the bathroom only twice a week, something even less (but I was used to that so i thought that was normal). The least I would go was every 2 days.
I went to the doctor's after 2 months of being of vitamin supplement and my hair not growing back.
She said it was Alopecia and that it was probably due to stress (AGAIN).
But she said that it was time to test her iron levels... as she was saying that, it is like lighting struck her, and she told me that perhaps I should take the blood test for Celiac decease.
The only downfall was that the test was $60. I get to the lab, and the test was in fact $125 for a full test.
I needed to know.... I was supposed to have the results within 24 hours.
A week later, I still had not received a call from my doctor's, I assumed it was good news. But I figured I would call to make sure that my iron level were okay and that I would be ok to come off of the iron pills.
When I call the receptionist tells me "Oh you were next on my list", instantly I think "oh noooo, what is wrong?", she says " The doctor would like to see you, Your blood work is positive for Celiac, but she says it is not urgent so I will book you for our next available appointment in 2 weeks."
I started researching Celiac a little more deeply and EVERYTHING just made so much sense.
My grandmother had died of small intestine cancer, even though she always ate healthy.
I decided to not wait for my doctor and try out the gluten free diet. Within a week my vision was clear as water (still with glasses on of course), my brain was not foggy and I cleaned my car for an hour and a half without fainting. I was excited, FINALLY, finally I knew what was going on, and finally I knew that I was not just crazy.
After 2 weeks I started having normal stools, even though I still only went to the bathroom every other day, I did not have to go 5 times to the bathroom in order to get anything out.
On the day of my appointment, the doctor told me that my iron level was still very low, my Vitamin D level was extremely low, along with my B12. She had not tested for any other vitamin levels but she assumed that my other vitamin levels were low also...
Now it explained why I had had to slap myself in the face in order to stay awake when driving.
2 out of the 3 tests came up positive (TtG and EMA). However the doctor said that she wanted to make sure that it was not a false positive.
She said she would sent me for an endoscopy, HOWEVER I would have to eat really bad (gluten) again until the appointment.
I prayed that the appointment would be scheduled soon... I've dealt with issues all of my life, I had no issues going through another couple of weeks of that.
Though I got the call yesterday and my appointment is at the end of august (in over 3 months).
After the appointment I started eating gluten again. My vision started getting blurry after the second day, I started falling asleep at the wheel within 12 hours, my stomach cramps, acid reflux was back within 12 hours.
I refuse to go through this for another 3 1/2 months.... But I feel like I would be a woos if I just gave up and did not go.
Plus, let's admit it, Gluten free food is expensive, being a home owner, mother of 2 and having a boyfriend who eats very well, financially we just get by. The extra expense isn't easy to deal with.
In order to get a tax refund for gluten free food, I need a note from my doctor...
Has anyone done it? Waited 3 months+ after a positive blood test???
Please re assure me, I felt so sick last night that I started crying and told my boyfriend that I could NEVER do it.
- 16 replies
- 2,571 views