Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

  • 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. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

      Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my...
    2. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
    3. junell
      - junell posted a topic in Related Issues & Disorders
      1

      Help!

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea...
    4. cristiana
      - cristiana replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time. Thankfully he is a fantastic GI, with a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously! But I needed my mind to be put at rest as my symptoms...
    5. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,648
    • Most Online (within 30 mins)
      7,748
    Livinonaprayer
    Newest Member
    Livinonaprayer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
×
×
  • Create New...