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

Negative Blood Test For My 5 Year Old

Hadleygirl02

Recommended Posts

Hadleygirl02 Rookie
Hadleygirl02
Posted

My daughter's blood test results came back and they were negative for celiac. One of her numbers (for Ttg? Or Tig? Tga? I have no idea!) was a 3. Does that sound about normal?

My frustration is growing. I have said previously, one of my big fears is we will never find an answer for her. sad.gif The next step....she is going to start taking a prescription antacid to see if that doesn't help her abdominal pain.) If her appetite is still decreased and she is still complaining of pain in a couple weeks, then they will do an u/s and possibly a endoscopy.

I just hate not having any answers. My poor girl has suffered for most of her life with constipation, encopresis, often diarrhea in between constipation. Extremely smelly, fatty stools. Off and on hip/leg pain. Over the last couple months, she has complained pretty mcuh daily of abdominal pain. Her appetite is considerably decreased.

All blood tests normal. Stool tests normal.

She has a rash on her butt that has pretty much been there for a year and a half, has not responded to antibiotics, creams, etc.

I THOUGHT the gastroenteroligist did a swab of her rash to see if it was DH (the rash that goes along with celiac) but I misunderstood. THey just swabbed her for a strep infection. If I want a skin biopsy, I have to take her to a dermatologist.

I am soooo FRUSTRATED. WHY does my daughter have a rash that won't go away? Is she destined to be on Miralax for the rest of her life? Will she always have trouble pooping? Will her belly hurt chronically? Why is her appetite so decreased?

What is my next step?

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

Celiac.com Sponsor (A8-M):


Darn210 Enthusiast
Darn210
Posted

Hadleygirl,

So sorry that you are still looking for answers.

I saw that you did a stool test. Was that through Enterolab? Did it check for gluten intolerance? Did anybody do any gene testing to see if she is genetically at risk?

There is nothing to stop you from trying a gluten-free diet. There are plenty of people on this board who did not have a positive diagnosis and had great improvements to their health by eating gluten-free. It doesn't hurt to try. If you are going to pursue additional testing with your GI, you might want to wait until after that has been done, or at least inform him that you are going to do a trial run of gluten-free.

Good Luck - I hope your dd gets some relief soon.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      43

      My journey is it gluten or fiber?

      I have taken the vitamins for a week. Haven't noticed any major changes but I will give it more time to see.
    2. 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...
    3. 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.
    4. 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!!! 😂
    5. 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
  • 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
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      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
      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.
×
×
  • 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.