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

My Kids Tested Negaive :)

nvsmom

Recommended Posts

nvsmom Community Regular
nvsmom
Posted

I finally got my kids tests back, although my doctor only ran the ttg IgA even though I requested the the panel (which is IgA and EMA up here) and all three kids were negative. :) I'm accepting that for now. There is a chance they could have it, and a few mild signs, but all of their ttgIgA were very low.

The only test that came back a problem was their vitamin D levels; 2/3 kids were low and 1 was at the low end of normal. I found that odd since they take about 500mcg (?) per day and they are outside a fair bit.

The doc did not run b12 like I asked. :blink: Nor did he run some others I wanted.

Anyways, they are all slowy going gluten-free regardless. They are eating through the last of the bread and cereals. Hopefully I can find food my picky eaters will like before they run out of wheat foods so it's not too hard on them.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

ALL three of my kids and two grands tested negative upon my diagnosis (I went undiagnosed for 43 years - had a moderate positive tTG IgA although I had very severe intestinal damage).

ALL had different celiac symptoms ranging from severe autoimmune diseases to more minor digestive symptoms - one only had GERD and recurring canker sores.

Although celiac tests were negative, each had various low vitamins/minerals.

ALL improved gluten free :)

Because of our experience I encourage anyone with gluten intolerance/celiac to trial removing it from their kids diets if there are any celiac symptoms, preferably after blood work. The range of symptoms with this disease are so varied it leaves many that could be helped with a dietary change out of the loop.

tom Contributor
tom
Posted

...

The range of symptoms with this disease are so varied it leaves many that could be helped with a dietary change out of the loop.

True dat!

(hat tip to Patteigh)

beebs Enthusiast
beebs
Posted

Kids have a really high false negative rate, mine tested negative even though he vomited every day of his entire life until he went gluten free (and the endo showed damage).

nvsmom Community Regular
nvsmom
Posted
  • Author

That's what I'm thinking for a couple of my kids... They could be celiac and the tests didn't show it.

Going gluten-free won't hurt them in any way, except they'll miss some flavours and textures for a while. Eating gluten-free, as far as I can tell, is usually healthier so going gluten-free is a win-win situation as far as I can tell... as long as we all survive the withdrawl! LOL

If they want to eat gluten when they are older (and buy their own) I'll support them, and beat into their heads the idea that they'll need to get tested every year for celiac, while watching for symptoms.

Thanks. :)

beebs Enthusiast
beebs
Posted

It is difficult without a solid diagnosis, my eldest son has been sneaking gluten at school - so we are about to do a gluten challenge with him. If he gets sick and I can see it is from Gluten then I will probably just stop the challenge and not bother with the diag, having said that, because our whole family is gluten free, our food bill is between twice and three times what a normal persons food bill is, I *hate* that!

Nyobi's Mom Newbie
Nyobi's Mom
Posted

Kids have a really high false negative rate, mine tested negative even though he vomited every day of his entire life until he went gluten free (and the endo showed damage).

This is so nice to hear that others have fallen in the false negative category with children. My middle daughter went lactose free at 11 months, and it took me three doctors, countless 'five diarrhea diapers a day' (at 3 1/2 years), and arguing with our current (and very understanding) doctor about diet to get him to order blood panels for Celiacs. Then she tested negative. We have family history of Celiacs, with adult diagnosis on both sides, though only I show any indication of symptoms and have never been tested. My DH and I decided to try the gluten free diet anyways. Within two months, even given some mistakes, Nyobi slept less, was happier, spoke more, moved more, and didn't cry when asked to walk for longer than five minutes.

Oddly enough, there was a pimply rash on the upper part of Nyobi's and my youngest daughter's arms. It went away, slowly, as well. so happy! And yeah, I guess the only definitive result those tests give is a positive.

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

Celiac.com Sponsor (A8-M):


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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,041
    • Most Online (within 30 mins)
      7,748
    Vfoley422
    Newest Member
    Vfoley422
    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
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.