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):

  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

Daughter told to go gluten free

Stacey grint
 Share

Recommended Posts

Stacey grint Newbie
Stacey grint
Posted

Hi

my 15 year old daughter has been seeing a gastro specialist for the last year due to having pain in her throat when swallowing food.  She had an endoscopy in September last year and they didn’t find anything wrong in her throat but found her to be slightly anemic and found a small abrasion on her stomach lining (still waiting for an ultrasound on this). She was asked to do a number of blood tests last month including celiac.  We have had the results back and she was found to be slightly low on iron and folic acid and her celiac results were positive.  The only symptons of celiac disease she has is the low iron and folic acid.  The gastro specialist has recommended she do a gluten free diet for 3 months …. I’m just wondering as I have read a lot of positives can be false for people under 18. She has not other symptoms or stomach problems so I’m just wondering why she has been recommended to so this ?  Any comments on this would be grateful 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Stacey grint!

Can you post the results of the specific blood test or tests done for celiac disease on your daughter? Please include the ranges for positive vs. negative as each lab uses their own scale.

When they did the endoscopy on your daughter did they biopsy the lining of her small bowel to check for damage to the villi that is normally a characteristic of celiac disease? The biopsies are sent to a lab for microscopic analysis. Many celiacs are "silent" and do not evidence GI distress or very little. I was one of them. If a biopsy was not done to check for damaged villi in the small bowel then it should be and that would require your daughter to be eating regular amounts of gluten for 6-8 weeks leading up to the procedure. The blood antibody tests is the first stage of testing for celiac disease and normally, if there are positive antibody tests, then an endoscopy with biopsy is done to confirm celiac disease. However, in the UK, if the antibody test scores were 10x normal the physicians will often forego the endoscopy/biopsy.

Edited by trents
KHL Rookie
KHL
Posted

Did the doctor ever mention Eosinophilic Esophagitis as a potential reason for the throat pain? It's another autoimmune condition and not uncommon for someone to have both conditions. 

knitty kitty Grand Master
knitty kitty
Posted

@Stacey grint,

Iron deficiency is a common symptom of Celiac Disease, especially in the early stages.  

I'm so glad doctors are recognising the connection now. 

Here's a science-y article about it...

Anemia in Celiac Disease: Prevalence, Associated Clinical and Laboratory Features, and Persistence after Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9604793/?report=reader

 

Difficulty swallowing can be a early symptom of deficiency in Thiamine Vitamin B 1. 

I had difficulty swallowing which only improved when I supplemented with Thiamine, B Complex, and magnesium glycinate.  I supplement Thiamine in the form Tetrahydrofurfuryl disulfide (TTFD), Benfotiamine, which has been shown to improve gastrointestinal health.  

Malabsorption in Celiac Disease causes vitamin and mineral deficiencies.  Getting checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac people.  Discuss with the doctor the benefits of supplementing while healing.  

Keep us posted on your progress! 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 HectorConvector's topic in Related Issues & Disorders
      348

      Terrible Neurological Symptoms

      I respectfully disagree, @Scott Adams. Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss. The body will use stored fat and muscle to provide energy in thiamine deficiency. This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass. Using stored fat and muscle for energy requires...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Irishgirl5's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Digestive symptoms yet negative celiac screening

      You may know this already, but in addition to what you've described, you may also want to get a genetic test. About 1/3 of people have one of the genetic markers that are necessary (but not sufficient) for getting celiac. If your son is one of the 2/3 of people that don't have the marker then it is almost certain he does not have celiac. (The genetic test...
    3. JennMitchell79
      - JennMitchell79 replied to JennMitchell79's topic in Traveling with Celiac Disease
      2

      Dreams Macao Beach in Punta Cana DR

      Thanks!
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      That is really interesting, especially because it points to how the gut microbiome may still stay altered in celiac disease even after going gluten-free. The idea that a fiber like inulin could help feed beneficial bacteria and reduce inflammation is encouraging, although I imagine some people with celiac disease or other gut issues might still need to introduce...
    5. Scott Adams
      - Scott Adams replied to Irishgirl5's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Digestive symptoms yet negative celiac screening

      @Irishgirl5, it does sound possible for those numbers to fluctuate a bit, especially when they are near the upper end of normal, but ongoing symptoms still make it understandable that you are concerned. The fact that his tissue transglutaminase immunoglobulin A is still technically in range does not always make the picture feel any clearer, especially with...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,995
    • Most Online (within 30 mins)
      10,442
    Jody Booker
    Newest Member
    Jody Booker
    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

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      I respectfully disagree, @Scott Adams.   Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss.  The body will use stored fat and muscle to provide energy in thiamine deficiency.  This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass.  Using stored fat and muscle for energy requires less thiamine than the amount of thiamine required to process carbohydrates.  Thiamine deficiency causes gastrointestinal Beriberi, a localized thiamine deficiency in the digestive tract, which results in dysbiosis, inflammation, and abdominal pain.  Carbohydrates can remain undigested in the intestinal system, which bacteria feed on, encouraging SIBO, and prompting dysbiosis, leaky gut, and inflammation.  Following a low carbohydrate Keto diet, like the AutoImmune Protocol diet, can help because it removes excess carbohydrates that the bacteria feed on.  SIBO can cause weight gain due to inflammational edema of the intestines (water retention in the tissues of the intestines), gas, and slowed transit times.  SIBO bacteria can absorb nutrients from your food before you can, resulting in additional deficiencies of other B vitamins and nutrients.   Thiamine deficiency is corrected with high dose Thiamine Hydrochloride, Benfotiamine and/or Thiamine TTFD (tetrahydrofurfuryl disulfide).  High dose thiamine in the form Benfotiamine has been shown to promote intestinal healing.  It improves "leaky gut".  High dose Benfotiamine will improve the gut microbiome in favor of beneficial bacteria.  Thiamine TTFD is beneficial for neurological issues.  Thiamine TTFD improves brain function and is beneficial for mental health issues such as depression and anxiety, and other neurological problems like Ataxia and Brain Fog.    Methylated (activated) B Complex vitamins help correct Thiamine deficiency because all eight B vitamins work together.  Vitamin C and the four fat soluble vitamins (A, D, E, and K) are needed as well.  Minerals like Magnesium, Calcium, Iron,  Potassium, and others may need to be supplemented as well.  Thiamine and Magnesium make life sustaining enzymes together.   Supplementing with high doses of Thiamine and other water soluble B vitamins will lower pain and inflammation, improve fatigue, improve muscle mass gain, as well as regulate the intestinal microbiome!  So, @Stegosaurus, you can get healthier while improving gut dysbiosis at the same time! References: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/
    • Aretaeus Cappadocia
      Digestive symptoms yet negative celiac screening

      By Aretaeus Cappadocia · Posted

      You may know this already, but in addition to what you've described, you may also want to get a genetic test. About 1/3 of people have one of the genetic markers that are necessary (but not sufficient) for getting celiac. If your son is one of the 2/3 of people that don't have the marker then it is almost certain he does not have celiac. (The genetic test won't tell you if he has celiac, it can only tell you whether or not he is susceptible to getting celiac.)
    • JennMitchell79
      Dreams Macao Beach in Punta Cana DR

      By JennMitchell79 · Posted

      Thanks!
    • Scott Adams
      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      By Scott Adams · Posted

      That is really interesting, especially because it points to how the gut microbiome may still stay altered in celiac disease even after going gluten-free. The idea that a fiber like inulin could help feed beneficial bacteria and reduce inflammation is encouraging, although I imagine some people with celiac disease or other gut issues might still need to introduce it carefully depending on tolerance. It definitely feels like an area worth watching, because anything that could help support healing beyond just avoiding gluten would be valuable.
    • Scott Adams
      Digestive symptoms yet negative celiac screening

      By Scott Adams · Posted

      @Irishgirl5, it does sound possible for those numbers to fluctuate a bit, especially when they are near the upper end of normal, but ongoing symptoms still make it understandable that you are concerned. The fact that his tissue transglutaminase immunoglobulin A is still technically in range does not always make the picture feel any clearer, especially with tummy pain, nausea, constipation, and diarrhea still going on. Anxiety can certainly add to gastrointestinal symptoms, but I can see why you would not want to assume that explains everything. It sounds like keeping an eye on things and being cautious with diet changes makes sense, especially if symptoms continue. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.