Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Can I Get In To See The Doc Sooner


Newbee

Recommended Posts

Newbee Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MJ-S Contributor

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 Contributor

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.

  • 3 weeks later...
vendeengf Newbie

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 Proficient

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 :P ) 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 Rising Star

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 Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jungle Rookie

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 Mentor

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!)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

    2. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    4. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,926
    • Most Online (within 30 mins)
      7,748

    Kptaylor
    Newest Member
    Kptaylor
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • TheDHhurts
      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.