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

Initial Appointment With Gi Specialist Dr Tomorrow


Meg123

Recommended Posts

Meg123 Explorer

Hello Again

I've been spending a lot of time in here over the past couple of months, I've become a bit fixated trying to work out whether or not to expect to see a positive biopsy or not. Too much googling, read too many study's etc on the chance of false positive ttg in the bloods vs the negative gene test. I'm reading a lot of varying results. Sending myself crazy.

I phoned the lab to see if I could get any info on which genes I actually did have, (since the report only said that I didn't have DQ2 or DQ8) ie after reading in here I see lots of members have DQ1. But they wouldn't give me any info :( , telling me I had to go through a Dr. <_<:rolleyes:

Anyway, I have stayed on the gluten even though I crumbled after three weeks, but just not hammered myself as much. I have my first initial appointment tomorrow with the specialist GI Dr. I'm in the process of writing down my symptoms so I don't forget. I was just wondering if anyone has any advice for me. I seem to have an awful tendancy to rub Doctors up the wrong way somehow :unsure: this is all costing more than we can afford and I just don't want to stuff it up, and have him refuse to biopsy me. We're not in a position to go and get 2nd or 3rd opinions.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I hope the doctor is helpful for you. If he does agree to biopsy do keep in mind that can be a false negative so do a gluten free trial after the test. You don't need to wait on the results.

If you were gluten free for a bit and it helped make sure to stress that. If you are doing a challenge and you have kept a symptom journal do bring that with you.

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

Meg123 Explorer

......

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

:angry: thats so frusterating. It's annoying enough when DH does that <_< , but when you are paying someone a LOT of money to care and listen to what you say regarding your health, which was why you were there, :angry::angry::angry:

Archived

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

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

    • Total Members
      133,098
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have taken the vitamins for a week. Haven't noticed any major changes but I will give it more time to see.
    • knitty kitty
      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
×
×
  • 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.