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

Dr. Or Enterolab And Diagnosis Or Not


bahrbdoll

Recommended Posts

bahrbdoll Rookie

So, I haven't had much success with answers to what's wrong with me- my insurance will pay for genetic testing, so do you think that it would be benifical to start w/ my Dr. and if I don't get anything usefull then do entero lab? What are the benefits of having an actual diagnosis? I do have 3 daughters i'm worried about. Thanks

I guess I should have mentioned I've been gluten-free for 3mo.- and I am seeing some improvements


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

If it would be helpful to your daughters, then you should consider getting the dr's dx. See where the dr wants to take the testing. It's hard to go back later if you decide you want testing down the road and have been gluten-free for awhile.

Lisa Mentor

These are the tests to request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Make sure that you are on a full gluten diet, until all testing is exausted. Enterolabs can test you for sensitivites, but they cannot diagnose for Celiac.

Good luck an take a walk around this place. It's full of wonderful information.

LDJofDenver Apprentice
So, I haven't had much success with answers to what's wrong with me- my insurance will pay for genetic testing, so do you think that it would be benifical to start w/ my Dr. and if I don't get anything usefull then do entero lab? What are the benefits of having an actual diagnosis? I do have 3 daughters i'm worried about. Thanks

I guess I should have mentioned I've been gluten-free for 3mo.- and I am seeing some improvements

If your medical insurance will pay for genetic testing I'd do it, especially since you don't have to be eating gluten to have that done (you mentioned you've been gluten-free for a few months).

A lot of celiacs on this forum (and out in the world in general) don't have a confirmed medical diagnosis (are self-diagnosed, in effect). My son was diagnosed by diet, by his GI doc, 11 years ago or so, which was good enough for him (and the doc!) after many many years of suffering and misdiagnosis. The GI doc's mother had celiac disease and doc took one look at my son's history and told him what was suspected, and put on a sort of Atkins diet to confirm. Both were delighted at my son's response and that was that. He began living gluten free.

I am diagnosed by both positive blood work and small intestine biopsy. A reason I see, by comparison of my son's to my case, is that with a medical diagnosis people (the public, family, schools, doctors/medical community) seem to take it more seriously and don't question you. Medical people are scientists and they always like "proof." However, for a large percent of celiacs, especially ones whose blood work came up negative, they have all the proof they need by the dramatic improvements once on a gluten free diet.

bahrbdoll Rookie

Thank You so much! That was the perfect answer, just what I needed to hear. I guess I'm the type of person who feels like I need it in black and white somehow someway. I'm just really having a hard time w/ Dr. telling me nope, no celiacs even though I litterally have experienced just about every symptom I've come across. yet, I'm improving slowly but surely being gluten-free- I just worry about the fact this is for life and I would like to know 100%, specially when it affects my girls. Thank you again

Amyleigh0007 Enthusiast

I finally got a doctor's diagnosis because of my genetic testing done through Entrolab. My doctor did not take me seriously when I first went in for the blood test. It was one year later with my gentic testing in hand did he sit and really listen to me. When he found out I had been gluten free for one year with fantastic results on top of having one Celiac gene and one gluten sensitivity gene he diagnosed me with Celiac. Since your insurance will pay for the genetic testing I would go ahead and have it done. You do not need to be eating gluten for it to be accurate. But, if you plan on having the blood test done to test for Celiac you should begin eating gluten again, at least for a few months. Three months gluten free is long enough for your body to begin to heal and you might not get accurate results.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      High DGP-A with normal IGA

    2. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      High DGP-A with normal IGA

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      High DGP-A with normal IGA

    4. - trents replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Finding gluten free ingredients

    5. - knitty kitty replied to Colleen H's topic in Coping with Celiac Disease
      6

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
×
×
  • 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.