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

So Confused And Frustrated...

Karagirl

By Karagirl
in Doctors

Recommended Posts

Karagirl Newbie
Karagirl
Posted

Hello,

I was diagnosed with Celiac disease in 2004. I had completely negative results on all my blood work, but a biopsy showed flattened villi. My doctor diagnosed me with celiac disease. I finally gained weight, stopped having trouble with loose bowels etc....

This past November I had my first problem with abdominal pain, etc...severe loose bowels, and I ended in the E.R. (I was also being treated for thyroid nodules, been put on prednisone and synthroid, and it made me hyperthryoid). My endo sent me to a new digestive doc. (as I had moved from area where doc. was who diagnosed me with celiac).

I couldn't believe my ears today. He "suspects" I do not have celiac disease, that I have IBS (I've had ONE intestinal problem in 4 years!!!!!!) because my blood work all showed negative 4 years ago for celiac disease.

I'm floored. I'm a bit angry and defensive. A gluten free diet has changed my life. And I have this terrible feeling he wrote me off as "IBS" before I even opened my mouth. One of the medications I was taking during the "shrink the nodule" time was cross contaminated with gluten products, I talked with the drug company about this.

So, this gastroenterologist ordered all new serum tests: Tissue transglut, IgG, anti-gliadin antibody, anti endomysial anitbody, quantitatiave IgA level and another biopsy.

*sigh* WHY???? I feel like he is trying to rule out celiac now.

And if I go through these tests, shouldn't I be eating gluten??? I don't want to do that, I know where that leads.

Any advice would be so very appreciated.

Thank you

:(

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

The best advice I can give you is to get a copy of all of your records (including the ones that show you have flattened villi) and find a doctor who knows something about Celiac.

Phyllis28 Apprentice
Phyllis28
Posted

In my opinion you need to locate a new GI.

Your blood tests specifically for celiac will come back negative because you have been gluten free. The only reason to have additonal tests is to diagnose another problem.

Hope your feel better.

emorgan816 Newbie
emorgan816
Posted

I'm leaning towards find a new GI doctor! We do need to have blood work done once every year to make sure our diets are remaining gluten-free, so I would at least go ahead and get that done (especially if the last time was 4 years ago). But for him to just bluntly state you have IBS is insane - isnt that just undiagnosed celiac anyways!? ;) Why would he not feel this was a reaction to gluten, or perhaps some other food intolerance?

If you are not comfortable with this new doctor then you need to be an advocate for your own health and find a new one. That is the one thing I've learned thru this whole process - we need to speak up and not be afraid to fire our doctors.

Good luck!

Elizabeth Secora

gluten-free since March 2007

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. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @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...
    2. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    3. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @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
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      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 re...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,097
    • Most Online (within 30 mins)
      7,748
    Hana B
    Newest Member
    Hana B
    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

    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @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
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @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
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      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.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.