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

By skinnyminny
in Doctors

Recommended Posts

skinnyminny Enthusiast
skinnyminny
Posted

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
ravenwoodglass
Posted

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
hurrican-drea
Posted

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
hathor
Posted

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
sickchick
Posted

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
buffettbride
Posted

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.

Go to topic listing

  • 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. Scott Adams
      0

      Fluffy Coconut Banana Pancake—Baked, Gluten-Free, and Family-Style

    2. elisejunker44
      - elisejunker44 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Schar's products contain wheat!

      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free...
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time. This makes it very hard for the body to absorb and utilize it. Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down. Thiamine Hydrochloride is great. Benfotiamine is wonderful, too. Retaining...
    4. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      Thanks again, I'll keep pressing on. 🤞
    5. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient". It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light. If not absorbed, excreted. Absorption of riboflavin will improve...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,597
    • Most Online (within 30 mins)
      7,748
    Caroline Alexandria
    Newest Member
    Caroline Alexandria
    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

    • elisejunker44
      Schar's products contain wheat!

      By elisejunker44 · Posted

      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
×
×
  • 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.