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
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.