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

Has This Happened To Anyone Else?


skinnyminny

Recommended Posts

skinnyminny Enthusiast

I went to the doctor today and was disappointed as always.I have had sharp pains from what I thought was a left over stomach virus but it has gone on so long ( 8 days) I thought I would go get it checked out. I went to the same doctors office I went to when I was so sick with finding out I had celiac, the doctor I saw that time refused to test me for Celiac that there was no way I could live the rest of my life without wheat gluten and it was all mental. Therefore he put me through everything else medicines, tests, scopes, anything and everything to get my money and so I got another opion and the test came back positeve for Celiac Disease.

SO today I went to the same office of the doctor who refused to test me, but saw another doctor and in my chart was a blood test that said I was negative for celiac disease. This doctor never did the test though because he was so againist Celiac the other doctor I went to for the second opinion diagnosed me!!! So i am goin in today to see if there was something wrong with me and he tells me I dont have celiac and wants to re scope and biopsy me!! I mean are you serious!! I could not bbelieve he was telling me this... I am so sick if I am to even get a crumb of gluten!! Sorry I had to rant I am hoping my parents do not let them re scope and biopsy me... I am having a cat scan done monday to see what the pain is from


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You really need to stay out of that doctors office and go to the one who diagnosed you even if you need to travel to do so. You also need to get copies of the records from the diagnosis that you can bring in to the doctors with you if you need to. You have a legal right to them. The second doctor is going off the records of the first one you saw in his practice he needs to see the positive diagnosis.

Also it might be a good idea to get your folks to come onto the board and read some posts, in particular in the prediagnosis and post diagnosis section. That will help them understand that you are diagnosed and really do not need to be tortured further just to line a doctors pockets. That said however you also need to keep in mind that not everything is celiac caused and be sure you have eliminated gluten completely, food, toiletries and cross contamination risks. If you still are symptomatic and all gluten has been ferreted out and you are through the healing phase you may have another issue going on.

hurrican-drea Newbie

How dare they! I am self diagnosed at 22. If I only had a dime for every doctor that said it's all in your head or offered me prozac. I kept saying I'm sick nrot ctazy, nobody listened. Don't be afraid to be insistent and don't ever forget yrou are a payring customer.

Drea

hathor Contributor

I imagine the blood test in there was a copy sent to your first doctor's office by the second doctor. Was just the conclusion sent or the numbers themselves? I am inclined to think that either the second doctor sent the wrong results or the doctor you saw doesn't know how to read them. You should get this straightened out. The easiest way would be to call the second doctor's office and explain the problem.

However, is there any reason to continue to go to the first doctor at all? If someone dismissed my symptoms or thought it was all in my head, I would immediately drop him. Particularly after he was proven wrong ... and it doesn't seem like this other doctor in his office is any better.

sickchick Community Regular

excuse me for dreaming of smacking my psychiatrist across the face with my medical chart lol!

Unfortuntely I've been in very similar situations for years. I appreciate your sheer frustration. I hope you find a brilliant lovely doctor B)

lovelove

buffettbride Enthusiast

Ya know, the more I've read around here, the 16-25 year olds have a real time with this. Between getting parents and doctors to believe you, that must be really tough. I'm so thankful so many of you have had the gumption to look this stuff up yourself and find your way here. As the mom of a Celiac I can't imagine not having this place as a resource, if only to read up and get a feel for what Celiacs experience and how to make life work in a gluten-filled world (the crap is everywhere I tell ya).

Archived

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

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

    • Total Members
      133,480
    • Most Online (within 30 mins)
      7,748

    radster47
    Newest Member
    radster47
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
    • cristiana
      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
    • knitty kitty
      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/
    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
×
×
  • 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.