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Does This Sound Like Celiac?


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24 replies to this topic

#1 Oli's Mom

 
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Posted 10 October 2012 - 09:10 PM

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
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#2 GottaSki

 
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Posted 10 October 2012 - 09:35 PM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 Oli's Mom

 
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Posted 13 October 2012 - 09:37 AM

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!
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#4 mushroom

 
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Posted 13 October 2012 - 10:45 AM

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!!
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Neroli


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#5 Oli's Mom

 
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Posted 21 October 2012 - 10:17 AM

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.
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#6 shadowicewolf

 
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Posted 21 October 2012 - 11:24 AM

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.
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#7 GottaSki

 
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Posted 21 October 2012 - 11:30 AM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 Oli's Mom

 
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Posted 21 October 2012 - 11:52 AM

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!
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#9 GottaSki

 
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Posted 21 October 2012 - 12:07 PM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 Oli's Mom

 
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Posted 21 October 2012 - 12:18 PM

Thanks Lisa, You are so very helpful!!
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#11 frieze

 
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Posted 21 October 2012 - 02:30 PM

http://primaryimmune...body-deficiency

IgG is split up into 4 subclasses, ea with it own job... What is his IgG2?
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#12 Oli's Mom

 
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Posted 21 October 2012 - 06:14 PM

http://primaryimmune.org/about-primary-immunodeficiency-diseases/types-of-pidd/igg-subclass-deficiency-and-specific-antibody-deficiency

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.
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#13 Oli's Mom

 
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Posted 22 October 2012 - 12:48 PM

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

 
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Posted 22 October 2012 - 01:06 PM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 Oli's Mom

 
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Posted 22 October 2012 - 02:53 PM

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!
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