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

Benefit Of Seeing Gi Doctor?


Mama Ruthies

Recommended Posts

Mama Ruthies Rookie

We had our 3.5 year old son tested through Enterolab in October and he came back elevated in everything with a celiac gene and a gluten sensitivity gene. We've had him gluten free since.

Is there any benefit to seeing a GI doctor? We wouldn't put him back on gluten for additional testing as we trust Enterolabs results. We also wouldn't have him scoped. I'm thinking it would be a better use of our money to have him see a naturopath to help us heal his body.

Does anyone have any things that they have seen as positives to having a GI doc? If the GI doctor wouldn't accept Enterolabs results, we wouldn't think of even paying the co-pay.

Thanks for any advice!

Amy


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



Celiac.com Sponsor (A8-M):



Guest j_mommy

Since he's been gluten-free since October, unless you want to do the gluten challenge, I don't think a GI is going to do much. THey can't really do any testing, b/c the tests won't be "true".

happygirl Collaborator

However, the doctor can look for other reasons that he is still having symptoms. I am assuming by your post that even though he's been gluten-free for 3-4 months, he is still having symptoms.

Sometimes gluten isn't the problem, or something gluten isn't the only problem.

HAK1031 Enthusiast

Does his pediatrician at least know? Doctor's notes for school can be important so that his needs are taken seriously. Also his nutrient levels in his blood and his growth may need to be mroe carefully monitored.But I agree that you definitely should NOT put him back on gluten for testing.

Mama Ruthies Rookie

Actually, our son didn't have any digestive symptoms. We had him tested thru Enterolab because he had tested positive to all twenty items the allergist tested him for (10 food/10 environmental). He has speech delays, and we didn't feel he could effectively tell us when food bothered him when we did food elimination trials so we decided to test thru Enterolab. We were shocked at his results!

Now we feel that his speech delays probably are attributed to the gluten. I nursed him until around 16 months and he got some vaccines around 19 months. His younger sister was born when he was 20 months and we noticed his speech regressed after she was born.

We have seen a gradual improvement in his speech since pulling the gluten and family members who don't see him often say they have noticed a big change.

We don't plan on having him have gluten again. Now I need to pull our other four kids (all double DQ1) off gluten and see how they respond.

I wasn't sure if there was anything else the GI would do. I'm very interested in making nutritional changes to help his body---supplements, etc. My guess is a lot of GI doctors don't deal much with that.

One gal from our church said her son's GI tested for enzyme levels. Have you heard of this? He was lacking some enzymes.

Thanks for your responses!

Amy

HAK1031 Enthusiast

I would not put a child that young on any supplements without a doctor's advice, but if your pediatrician (who should be aware of your son's gluten problems) advises you, then I'd say there's no need for advice from a GI on that count. You might consider a nutrionist though, or a naturopath like you mentioned. But do talk to your pediatrician as they may be more comfortable with a GI treating your son- my pediatrician is clueless about celiac. As for the enzyme levels, I have no idea. Good luck!

Archived

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

  • 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 replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    2. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

    3. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    4. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

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

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748

    KimberlyS
    Newest Member
    KimberlyS
    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

    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
×
×
  • 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.