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

Conflicting results?

Christina.V

Recommended Posts

Christina.V Apprentice
Christina.V
Posted

We are trying to figure out if my 5 yr old has celiacs, any advice would be super helpful!

The indicators that he may be positive:

  • I have celiacs (and did not have any GI symptoms prior to Dx)
  • 250 Ttg/iga
  • elevated liver enzymes
  • diarrhea and stomach pains when eating gluten at my house, Ex-H claims that he is symptom free at his
  • in the biopsy, the surgeon indicated that when he introduced water into the small intestine he saw some damage
  • He is only in the 5th percentile for growth

Indicators that he may be negative:

  • the biopsy results don't show any damage

Any advice on additional bloodwork that I can have the Dr. run? I don't want to simply say "oh the biopsy came back negative, so he's in the clear". My ex-husband is saying that I'm on a witch hunt (grrr).

My goal isn't to continue poking and prodding my poor little man, but the ex refuses to just go gluten free voluntarily. It's very frustrating!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

You are in a tough position!  A positve TTg of over 200 sounds like (labs ranges can vary) your  son could have celiac disease.  The TTg is just one celiac disease a screening test.  I would ask for the complete panel. If that was not ordered.   Some of the other celiac tests are very specific to celiac disease.  A genetic test can help rule out celiac disease as 30 % of the poulation carries the gene but only a few lucky ones ? actually develop celiac disease.  That might be worth getting too!  

Here are the tests:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
-endoscopic biopsy - make sure at least 6 samples are taken.  The small intestine is vast!  Over 20 feet in length and when stretched out is is the size of a tennis court!  How many biopsies were actually taken?  And where were they taken?  It is so easy to miss damage areas!  
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  About 8 to 12 weeks for the blood test.  How much gluten is he getting?  I had to give my daughter gluten daily (we have a gluten-free home) for three months before I had her tested.  
 
(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes!   Get all copies of lab results too!  

 
nvsmom Community Regular
nvsmom
Posted

I would guess that he does in fact have celiac disease. That is WAY too many coincidences.  Plus the tTG IgA is quite a specific test.  It has a false positive rate of only about 5%, and those are generally weak positives - 200 is far from weak. :( And those weak false negatives are caused by something else, usually hashimoto's, T1D, crohn's, colitis, liver disease or a serious infection.  Something causes a positive.

Remember, a positive result then means that there is a 95% chance that he has celiac disease.

This report has more info on the tests. Open Original Shared Link

I agree that getting more tests done could be helpful if you want to confirm the diagnosis. The more tests the better since celiac disease tests are not that sensitive and can miss up to 25% of all celiacs.

Do remember that a negative biopsy does not rule out celiac disease. It just doesn't support the diagnosis!  Biopsies can miss up to 1 in 5 celiacs; that's 20%!  It isn't uncommon at all.  False negatives become more likely if the doctor did not sample widely, took fewer than 6 samples, or if the patient was gluten-free.

I would push for the diagnosis. Fasano (a celiac expert) likes to recommend that a patient meet 4 out of 5 criteria for a diagnosis:

1.  Symptoms of celiac disease

2.  positive blood tests

3.  Positive biopsy

4.  positive genetic tests (DQ2 and/or DQ8)

5.  Positive response to the gluten-free diet

Open Original Shared Link

It sounds like he had symptoms and a positive blood test, and I would bet money on a positive genetic test.  How about a gluten free trial of 1 year and then retest to see how much the autoantibodies have come down?  That would be proof right there... although it could be hard with the ex. :(

Try to get those other tests done first, and doctor shop to get the diagnosis if you have to.

Good luck!

Christina.V Apprentice
Christina.V
Posted
  • Author

Thank you SO MUCH for those statistics, and the reports to back them up. I feel like my mothers intuition is saying that he has it, so I'm not willing to walk away from this and say he's all clear. Even though my intuition tells me this I realize it needs to be a data driven decision.

I would be happy to go gluten-free for a year and see how he does. It's definitely a matter of convincing the ex to do the same. 

Right now I'm going to get a second opinion. ?

bartfull Rising Star
bartfull
Posted

Maybe if you show all of this info to the ex?

squirmingitch Veteran
squirmingitch
Posted

Here are some more reports that may be helpful in convincing the ex that this is serious stuff and not to be taken lightly.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,112
    • Most Online (within 30 mins)
      7,748
    Donna J G
    Newest Member
    Donna J G
    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

    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
×
×
  • 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.