Does This Sound Like Celiac?

[Oli's Mom]

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

[GottaSki]

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

[Oli's Mom]

  On 10/11/2012 at 5:35 AM, GottaSki said:

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!

[mushroom]

  On 10/11/2012 at 5:35 AM, GottaSki said:

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!!

[Oli's Mom]

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.

[shadowicewolf]

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.

[GottaSki]

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

[Oli's Mom]

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!

[GottaSki]

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.

[Oli's Mom]

Thanks Lisa, You are so very helpful!!

[frieze]

Open Original Shared Link

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

[Oli's Mom]

  On 10/21/2012 at 10:30 PM, frieze said:

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.

[Oli's Mom]

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

[GottaSki]

  On 10/22/2012 at 8:48 PM, Oli said:

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

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.

[Oli's Mom]

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!

[GottaSki]

  On 10/22/2012 at 10:53 PM, Oli said:

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

[mushroom]

  On 10/22/2012 at 10:53 PM, Oli said:

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 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

[frieze]

  On 10/22/2012 at 10:53 PM, Oli said:

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.

[megsybeth]

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

[Oli's Mom]

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!

[PA Celiac Mom]

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!

[kareng]

  On 10/31/2012 at 1:29 AM, PA Celiac Mom said:

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

[megsybeth]

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!

[Oli's Mom]

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).

[MitziG]

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!