8 replies to this topic

[Newbee]

So I got the celiac blood work back from GP and it was extremely positive (125). She referred me to see a GI doctor. I got a recommendation for a good GI doctor from someone that leads a celiac support group in town. When I called to make an appointment they told me I'd have to wait a month before I could see the doctor (and that's just for a consultation - not even the biopsy yet). They knew when I called in that it was because I had a positive blood test for celiac. I've since called back and asked if they have a waiting list and could they put me on it in case an opening came available for my doctor so that I could be seen sooner. They said yes. Not sure if that will help or not. Just wondering if anyone had any suggestions on how else I may coax them to get me in earlier. Seems like they should be able to try and fit me in sooner so I can have the biopsy and stop eating gluten and get on with my life. I hate to wait so long and continue to damage my system. And if I have to wait a month for a consultation will I have to wait a month of more for the biopsy? I was thinking maybe I should still call in and check about cancellations or perhaps try and speak to a nurse and see if I can get them to convince them to try and get me in earlier. Any suggestions would be great! Thanks.

[MJ_S]

Discussing with the nurse sounds like a great idea to me.

Here's a question: If your biopsy is negative would you continue to gluten, knowing that your blood tests were positive?

If it were me, I would stop eating gluten immediately, because I don't see how the results of the biopsy would change this decision.

I'm sure others on the board are more knowledgeable about this, but the intestines take a longer time to heal than it takes for antibody levels to reduce, so I would think you could stop eating gluten, have a biopsy four weeks later, and still see the damage (assuming it's there to begin with).

[Newbee]

I've read that you should continue to consume gluten until after you've had the biopsy otherwise you could have a false negative result. I figure if I'm going to go through with doing the biopsy (which I'd rather not as it sounds kind of scary but figure I better) I should make sure I do what I can so they can get an accurate result.

[vendeengf]

I've read that you should continue to consume gluten until after you've had the biopsy otherwise you could have a false negative result. I figure if I'm going to go through with doing the biopsy (which I'd rather not as it sounds kind of scary but figure I better) I should make sure I do what I can so they can get an accurate result.

ok how i see it is u can stop and feel better or keep eating it and feel like crap . i got my blood work back and it was positive i stopped eating gluten right there and then 6 weeks later i saw the doc 3 weeks later was scoped down the mouth then 3 weeks later took a pill(cam) not so good then 4 weeks later scpoed other end way worse then they though pollip the size of sode pop cap my doc told me he has never seen one that size that isnt cancer befor or someone my age so i say stop

[mushroom]

Cancellation lists work sometimes and sometimes they don't. It depends how popular the doctor is and how many people are ahead of you on the list (an important question to ask). I recently had one work for me - ended up with a dud doc, but he ordered the right test. So I saw him on Fri, had test on Mon., but they said it would be five weeks for follow-up. On the cancellation list I saw him within one week so got a copy of the report, which is what I wanted. But generally the good docs are all booked up and have lists of people waiting for cancellations. I waited 2 months last year for a cancellation and didn't get it (didn't think to ask how many people were also waiting ).

As for the biopsy, many people (mainly not doctors who make money from doing procedures ) feel it is not necessary. After all, as a pp said, if gluten makes you sick would you continue to eat it if your biopsy was negative? However, if you want the "gold standard of celiac diagnosis, you should continue to eat gluten to be sure of an accurate result. While the EGD can tell you other things besides if you have celiac, it can always be done at a later time if they are looking for something else if your symptoms do not resolve on a gluten-free diet.

[GlutenFreeManna]

Call and talk to the appointment taker. Explain that you are on the waiting list already but your really, really need to get in sooner. Ask if there is a certain time of day when you can call everyday and ask if there have been any cancelations. This worked for me last year when I had pneumonia but the ER dr said it might be something more serious based on the cloud on my lung x-ray. I needed to see a pulmonologist ASAP because everyday my breathing was getting worse. I was scared to death it might be lung cancer. The earliest appointment was a month away. I took that appointment but also asked what I could do to get in sooner. They put me on the waiting list but admitted that was a pretty long list of others also wanting to get in sooner. The appointment taker took pity on me (probably because I could barely talk) and told me that if I called everyday at 8 AM that is when they would know if anyone had called to leave a cancellation message the previous night. She got in at 7:30 and reviewed the messages in the first half hour. Although they have the waiting list and would go in order when assigning people to any cancelations she said if someone called at 8:00 AM (the office open time) that she would give any canceled slots to the person on the phone before pulling up the waiting list. It took calling everyday for a week but I did get in earlier and only had to spend about two weeks total thinking I was dying from lung cancer (turned out I just had a bad case of pneumonia and the shadow on my lung was scarring from previous lung infections).

[love2travel]

Our typical wait lists for specialists vary from 6-18 MONTHS. I had to wait 8 months for an MRI after an injury; 16 months to see an orthopedic surgeon; 18 months to see a chronic pain management physician; 12 months for a neurosurgeon and so on. Pretty grim here in Canada in many ways. Thankfully I only had to wait to see a gastroenterologist 4 months. My second MRI was only 6 months.

[Jungle]

I am also from Canada and the 6 month wait for the scope is what made me decide not to wait but just to get on with it. I went gluten-free after a Ttg of 193. Four months later I am doing better but not as much as I'd hoped. I keep thinking it takes adults 2-5 years to heal. So I can't expect to be all better right away.

[love2travel]

I am also from Canada and the 6 month wait for the scope is what made me decide not to wait but just to get on with it. I went gluten-free after a Ttg of 193. Four months later I am doing better but not as much as I'd hoped. I keep thinking it takes adults 2-5 years to heal. So I can't expect to be all better right away.

Aren't the waits insane? I was told I could fly to the U.S. for an earlier appointment but as I had to eat lots of gluten for at least three months anyway I decided to go ahead and wait. (I went on the gluten challenge as gluten gives me absolutely zero GI symptoms and as such I was somewhat in denial - I need proof on paper!)