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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Does This Sound Like Celiac?


Oli's Mom

Recommended Posts

Oli's Mom Newbie

Hello!

My 6 year old son has a long history of medical issues. He has craniosynostosis, which was treated last year (with major surgery to open his skull and reshape it).

Starting in January 2012, he began having fevers and mid abdominal pains. He weighed 40 pound then. He continued to look pale and thin, so he had every test run my pedi could think of (except for Celiac, I guess). He was seen by a GI who diagnosed him with constipation based on his CT scan only. He was on major laxatives for five months with no improvement with his pain. A new GI has taken him off laxatives (he never was constipated) and did a follow up in three months. He noticed at the three month follow up my son has grown very little and has not gained weight. He now is up to 41 pounds (1 pound in 10 months). He still feels sick three days out of the week, is dizzy with headaches and occasional stomach pain and very grumpy. He catches viruses often and has a hard time getting over them. He seems to be delayed in school.

He also had low globulins on a recent blood test, which my pedi said was normal (the GI begs to differ). Our GI just ordered all the antibody tests for Celiac. My husband and I are almost wishing for Celiac, as we would do anything to help our son feel better. The other option is that all his symptoms are related to pressure in his brain, which would be a worse diagnosis.

So, what do you think? Celiac? Thanks so much! Jessica

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

I'd say Celiac Disease is a definitely possible. Glad you are having him tested.

A couple thoughts:

Should he have all negative tests, talk to the GI about an endoscopy. It is not uncommon for children to have negative blood tests with positive endoscopic biopsy. If you don't wish to have an endo - I highly suggest removing ALL gluten for at least three months (six is better) to monitor symptom improvement. Removing gluten is the only test for Non-Celiac Gluten Intolerance - although your son's symptoms do indicate Celiac, NCGI can cause very serious symptoms as well. CAUTION: Don't remove gluten until you are sure you have completed all testing - blood and possible endoscopy.

If your doctors have not run them yet, blood tests for nutritional deficiencies can help indicate Celiac Disease - the damage to the small intestine prevents proper digestion and absorption of nutrients. My celiac doc recommended Bs, D, K, Iron, Ferritn, Copper and Zinc. I've read other posts that recommended A, Calcium, Magnisium and Potassium as well.

Good Luck to your family :)

Link to comment
Share on other sites
Oli's Mom Newbie

I'd say Celiac Disease is a definitely possible. Glad you are having him tested.

A couple thoughts:

Should he have all negative tests, talk to the GI about an endoscopy. It is not uncommon for children to have negative blood tests with positive endoscopic biopsy. If you don't wish to have an endo - I highly suggest removing ALL gluten for at least three months (six is better) to monitor symptom improvement. Removing gluten is the only test for Non-Celiac Gluten Intolerance - although your son's symptoms do indicate Celiac, NCGI can cause very serious symptoms as well. CAUTION: Don't remove gluten until you are sure you have completed all testing - blood and possible endoscopy.

If your doctors have not run them yet, blood tests for nutritional deficiencies can help indicate Celiac Disease - the damage to the small intestine prevents proper digestion and absorption of nutrients. My celiac doc recommended Bs, D, K, Iron, Ferritn, Copper and Zinc. I've read other posts that recommended A, Calcium, Magnisium and Potassium as well.

Good Luck to your family :)

Thank you so much Lisa, for the info. I'll be sure to post when we get his results back!

Link to comment
Share on other sites
mushroom Proficient

I'd say Celiac Disease is a definitely possible. Glad you are having him tested.

A couple thoughts:

Should he have all negative tests, talk to the GI about an endoscopy. It is not uncommon for children to have negative blood tests with positive endoscopic biopsy. If you don't wish to have an endo - I highly suggest removing ALL gluten for at least three months (six is better) to monitor symptom improvement. Removing gluten is the only test for Non-Celiac Gluten Intolerance - although your son's symptoms do indicate Celiac, NCGI can cause very serious symptoms as well. CAUTION: Don't remove gluten until you are sure you have completed all testing - blood and possible endoscopy.

If your doctors have not run them yet, blood tests for nutritional deficiencies can help indicate Celiac Disease - the damage to the small intestine prevents proper digestion and absorption of nutrients. My celiac doc recommended Bs, D, K, Iron, Ferritn, Copper and Zinc. I've read other posts that recommended A, Calcium, Magnisium and Potassium as well.

Good Luck to your family :)

What she said!!

Link to comment
Share on other sites
Oli's Mom Newbie

So, we got his results back! He is low in all of his IgGs, especially IgG1 (421). The IgA is normal. His TT IgA was only 2.3 and his TT IgG was 0.48.

So the Celiac tests were negative, but I wonder if his low over all globulins had anything to do with this? The GI will call me on Tuesday. I'm wondering how much I should push for the biopsy or just try gluten free for a while. I'm pretty convinced he's got issues with gluten after monitoring his diet for two weeks.

Link to comment
Share on other sites
shadowicewolf Proficient

I'd go for the biopsy first if he is having stomach issues. They might be able to see something whilst in there getting them.

Link to comment
Share on other sites
GottaSki Mentor

Hi Jessica-

I am a bit confused that you say his Ig's are low. Do you have the ranges for

Total IgA

Total IgG

If these are indeed low, all celiac blood tests would be inaccurate in detecting Celiac Disease.

Regardless of the reason he tested negative, having the endoscopy to obtain celiac biopsies would be a good idea given his symptoms. In addition to the biopsies, the endo does take a look at other parts of the digestive system which can be of some benefit.

As you know the option would be to remove ALL gluten for at least three months. The disadvantage here is if he improves gluten free it can be very tough to go back to eating gluten if you decide to obtain a diagnosis. Perhaps ask the doctor during the discussion regarding possible endoscopy - if he would diagnose either Celiac or NCGI if your son's symptoms resolve while gluten-free?

Good luck on Tuesday :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Oli's Mom Newbie

Thanks so much!

Total IgG is 534 (Online says should be higher than 667)

Total IgA is 59 (online says should be higher than 79-but that seems high)

Total IgM is 61 (online says should be higher than 40)

These are low (but on the chart) on the reference range provided by the lab, but clinically low on a chart I found for 6-8 year old kids.

Not sure what to go by!

Link to comment
Share on other sites
GottaSki Mentor

That Total IgA is low from all the numbers I've seen, so all his IgA based celiac antibodies tests would be inaccurate as he cannot produce the antibodies measured in those tests -- IMO another good reason to take a look/obtain biopsies.

I'm not clear on the IgG or IgM numbers - would be good for you to verify with doctor whether he is low/deficient in all of the Ig's.

Link to comment
Share on other sites
Oli's Mom Newbie

Thanks Lisa, You are so very helpful!!

Link to comment
Share on other sites
frieze Community Regular

Open Original Shared Link

IgG is split up into 4 subclasses, ea with it own job... What is his IgG2?

Link to comment
Share on other sites
Oli's Mom Newbie

Open Original Shared Link

IgG is split up into 4 subclasses, ea with it own job... What is his IgG2?

His IgG2 is 91. It's not quite as bad as his IgG1.

Link to comment
Share on other sites
Oli's Mom Newbie

His GI just called and left a message saying everything is normal. He doesn't have Celiac. See you back in three months. :blink:

Link to comment
Share on other sites
GottaSki Mentor

His GI just called and left a message saying everything is normal. He doesn't have Celiac. See you back in three months. :blink:

:blink: is right

Did he happen to explain why your son's tests are accurate enough to dismiss Celiac Disease if he is not producing enough IgA to have IgA based tests be reliable?

As I see it, you have two choices:

Find another doctor that specializes or has experience with Celiac Disease - a local celiac support group may be able to help find such a doctor in your area.

Remove ALL gluten to monitor for symptom improvement &/or resolution. The diet itself is a very good test and will be good information to provide to another doctor down the road.

Link to comment
Share on other sites
Oli's Mom Newbie

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

Link to comment
Share on other sites
GottaSki Mentor

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

It is a good idea - perhaps he'll want to biopsy if it's positive :)

Link to comment
Share on other sites
mushroom Proficient

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

This does not make sense either. You can do both at the same time. The genes are NOT affected by lack of gluten :blink: What is he talking about???

Edited to say: Just saw Lisa's reasoning; hadn't considered he might be persuaded to do another biopsy, in which case continue with the gluten :D

Link to comment
Share on other sites
frieze Community Regular

I just got off the phone with him. He wants to do HLA gene testing before we try the diet. I'm okay with this plan!

Just so you know that gene testing is not diagnostic. You can have gene(s) and not have the disease, and not have either of the two common genes and still be celiac.

Link to comment
Share on other sites
megsybeth Enthusiast

Hi Jessica, Your story reminds me of my son and my struggle to get a clear diagnosis. Have you considered having yourself or your husband tested? That was where the process with my son led me. I recognised some symptoms and did test positive, which makes me think gluten-free will help my son, regardless of endo. Without that, his GI would probably not have looked further. Good luck! Megan

Link to comment
Share on other sites
Oli's Mom Newbie

He had the test on Friday. It should take about two weeks to get back. We are also going to have his dad tested as he has always had bowel issues. If all tests are negative, we will give it a rest. If anything is positive, we will pursue a Celiac diagnosis! Thanks all for your great advice!

Link to comment
Share on other sites
PA Celiac Mom Newbie

Does this sound like celiac? My son has had diarrhea and vomiting (about 1x/day) for the last 4 weeks. We thought it was from the cold virus that turned into an ear infection and later bronchitis. Once the virus cleared up, the d & v continued. The pediatrician ran a stool sample, positive for the tissue transglutaminate = 5. But negative for the other celiac indicator (I didn't write that one down). On top of that, he vomits at least 1x/day usually in the morning. He also vomits if he's stressed about homework or going to school. He's missed 16 school days so far. When I keep him home he's seems sick. Laying on the couch, head on a pillow. He perks up for the weekends and wilts on mondays. We are getting the other test results back this week to see if there is anything else going on. If not, he will have to go back to school. I plan to speak with the teachers, etc. so they are on board. Help!

Link to comment
Share on other sites
kareng Grand Master

Does this sound like celiac? My son has had diarrhea and vomiting (about 1x/day) for the last 4 weeks. We thought it was from the cold virus that turned into an ear infection and later bronchitis. Once the virus cleared up, the d & v continued. The pediatrician ran a stool sample, positive for the tissue transglutaminate = 5. But negative for the other celiac indicator (I didn't write that one down). On top of that, he vomits at least 1x/day usually in the morning. He also vomits if he's stressed about homework or going to school. He's missed 16 school days so far. When I keep him home he's seems sick. Laying on the couch, head on a pillow. He perks up for the weekends and wilts on mondays. We are getting the other test results back this week to see if there is anything else going on. If not, he will have to go back to school. I plan to speak with the teachers, etc. so they are on board. Help!

From the Univ of Chicago Celiac center about "stool Celiac tests"

"Why don

Link to comment
Share on other sites
megsybeth Enthusiast

HI PA Celiac Mom. I'd recommend reading a bit on here about appropriate testing and also googling a bit. I'm dealing with a late celiac diagnosis for myself and for my son who I believed was screened. My son was first "tested" through stool screening for fats in the stool at 18 months. I was told he didn't have celiac based on this. The main reason for testing was markedly small stature. This has gotten worse and I also followed up with another GI when I switched insurance, about a year ago. GIs are the experts in this, right? I've learned not really. She also did some stool testing.... In addition to short stature my son developed symptoms like your son's, terrible diarrhea going on three months now. We have the endoscopy tomorrow so an end is in sight.

I guess my main point is that there are a tragic number of false negatives. This is much worse than kids being missed for screening because as moms we sort of file it away. Doctor said no, check that off the list. I'm not a crazy, anti-science person, it's just I've seen firsthand how this is just not quite on the radar for doctors. Good luck!

Link to comment
Share on other sites
  • 2 weeks later...
Oli's Mom Newbie

Okay. I just received his blood results. They say:

HLA Class II, Locus DQB*, Allele 1 02:01

Results: Positive for HLA-DQA*05 and HLA-DQB*02 alleles

HLA Class II, Locus DQB*, Allele 2 05:01

Patient has the HLA-DQ2 antigen, but does not have the HLA-DQB antigen

HLA_DQB Genotyping Interpretation

If less than 2 alleles are reported for a locus , the patient is likely homozygous.

I have not yet spoken with his doctor. His appointment is on Tuesday. I know he does have the Celiac gene. I am wondering based on the results if he is homozygous for it (which would make me more sure of the diagnosis).

Link to comment
Share on other sites
MitziG Enthusiast

Insist on an endoscopy and biopsy. Blood only tells so much. My son was just like yours, only anemic too, and after 2 years of being told he was "just fine" even though he was barely growing and cried every day about his stomach I demanded they scope him. As in refused to leave until they agreed to do it. I didn't even know about celiac at the time, and no tests were done for it. The point is, you KNOW something is wrong inside his guts, so MAKE them look.

What they found was one of the worst cases of celiac the dr had ever seen. And what followed was testing for the rest of us (which were positive for my daughter and I) and positive biopsies for us as well.

Doctors are useful for doing the tests. But in my experience and opinion, parents are better at getting to the bottom of things. Do NOT let them push this undeer the rug, your son needs you!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,506
    • Most Online (within 30 mins)
      7,748

    NanaA
    Newest Member
    NanaA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • McNish
      If you're ever in the Peoria IL area - Queen of Squash is 100% gluten-free.   Pekin (just outside Peoria) Whiskey Taco is 90% gluten-free.  The owner's mom is Celiac so they get it!   Just let your server know.   https://thequeenofsquash.com/ https://whiskey-taco.com/
    • trents
      Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.
    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
×
×
  • Create New...