8 yr old neg test and chronic constipation

[Camyblue7]

Hi! Complete newbie here. I have 2 sons I'm currently trying to figure out. My 8 yr old had a celiac test last month the ttg IgA and it was 1.9 ( <20 is negative).  A little background...he was my happy baby until he was 2 and had pneumonia. After that he wouldn't sleep, had constipation and now impacted with encorpresis.  For about 3 -4 years until he was almost 6 he had the most awful tantrums because of the silliest things like his other part of a sandwich was thrown away when he finished eating it 12 hours ago. He literally would have tantrums all day fall asleep and wake up continuing his tantrum. Then other times we was a completely nice and awesome little boy. Now the main concern is the chronic constipation. GI Dr has him trying dairy free but hasn't seemed to really make any difference. He is on miralax daily after a lot of clean outs and he is still very inconsistent and with the miralax just seems to make his poop super watery. 

Then my oldest son is almost 10 and is seeing a nutritionist for the last year because he has fallen below his curve. He was my fussy baby. Had colic, acid reflux, wouldn't sleep, had stomach aches for 2 years before that was eventually linked to dairy. He is now considered lactose sensitive. Now he is only 56 pounds and has the hardest time gaining any weight. He is the smallest kid in his entire grade. At his last nutrition appt last week she wants him to see his regular pediatrician to " look him over". And pretty much told him to eat cheeseburgers.  The thing is is he eats all the time. Thinking about him I started to wonder with both kiddos issues could they be gluten sensitive since my youngest test for celiac was negative? 

[trents]

Yes, NCGS (Non Celiac Gluten Sensitivity) could be the culprit. The son who had the antibody test, do you know what his total IGA score was? Low total IGA can put a downward skew on the tTG-IGA score. Children can be more difficult to assess for celiac disease. Their immune systems are immature and may not respond to gluten like that of adults. And, there is some thought out there that NCGS is a precursor to full-blown celiac disease. The thing is, constipation is a classic symptom of celiac disease in children. If I were you, I would ask for a more complete celiac panel as explaincd here on "Other Tests": https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ The tTG-IGA is considered the centerpiece of the celiac panel but sometimes misses those who actually have celiac disease.

But just a heads up here: Do not start either child on a gluten-free diet until all testing is complete. There is also an endoscopy with biopsy that can be done to check for celiac disease damage to the villi that line the small bowel. You might also look into genetic testing to establish a potential for developing celiac disease.

Edited January 4, 2022 by trents

[Camyblue7]

Thank you! I will do that. I did not realize there are more tests besides the ttg IgA and IGA  His total IGA was 110 ( range 58-204) so right within range. I didn't realize there is genetic testing available either. I will have to look into that thank you!

[trents]

Keep in mind that the genetic testing only establishes the potential for developing celiac disease. Currently, there are two genes that have been identified with celiac disease risk: DQ2 and DQ8. I recently read about a potential third one. Having one or both of the genes does not guarantee that a person will develop celiac disease. For the potential to be manifested in actual celiac disease there has to be some kind of triggering stress event, such as a viral infection.

[Camyblue7]

Interesting. Good to know thank you. Is there a way that they determine non celiac gluten sensitivity? 

[trents]

Only by first ruling out celiac disease. Many of the symptoms are the same but NCGS doesn't cause damage to the small bowel villi so it won't throw antibodies and a biopsy will be negative.

[Camyblue7]

Oh ok thank you!

[trents]

The most current estimates are that about 1% of the population has celiac disease but 10-12% of the population have some degree of gluten sensitivity. Also, a recent study done by the Mayo Clinic with about 300 people related to each other showed that 44% of those who are first degree relatives of those who had been diagnosed with celiac disease also had celiac disease. To be fair, earlier studies showed the rate to be more like 10% among first degree relatives. The point being, there is a fairly good chance that if your son has celiac disease that other members in your immediate family will also have it. Many people with celiac disease experience few if any symptoms in the beginning stages. We call them "silent celiacs." By the time they begin experiencing significant symptoms there can be damage to other body systems. All this to say, if your son is diagnosed with celiac disease it would be a good idea for other family members to get tested.

[Camyblue7]

Interesting thank you! Would it be worth it to have my older son tested who has the delayed growth or could that just be from his lactose sensitivity?

[trents]

I wasn't aware that lactose sensitivity can cause delayed growth. Many celiacs can't handle dairy. After going gluten free and healing of the villi is complete, which often takes about two years for adults, some of them find they can add dairy back in without any issues. But sometimes the mistake is made of assuming that the issue with dairy is lactose intolerance. It can be. But sometimes it isn't the lactose (which is the sugar component of milk) but the dairy protein casein. Research has shown (for some people) that casein causes villi blunting like gluten does. I would definitely have your older son tested for celiac disease. And you and their father should be tested at some point also since you the parents are first degree relatives of the boys if either of them turns out to have celiac disease.

[Camyblue7]

Thank you! This has been very helpful. I'll bring it up at my son's checkup appointment next week. 

[trents]

Please be aware that most family physicians are woefully ignorant about celiac disease and many or most will just blow you off. This has been the an oft repeated testimony by many who participate in this form. Because of that it has taken many of us ten years or more to get the proper testing done to finally arrive at a diagnosis. You are more likely to get taken seriously by a GI doc but unfortunately even some of them are skeptics about the frequency of celiac disease in the population and are operating on extremely out of date information coming from the dark ages of their medical training. Fortunately, the awareness of gluten-related disorders is growing, especially among younger physicians. Some people find they just have to change doctors until they find someone who will take them seriously and order the proper tests.

It's best to go armed with information to these doctor's visit and to be assertive. Ask for the testing you want done and if the doctor is uncooperative or blows you off, seek out another. Here are some resources that might help:

https://www.beyondceliac.org/celiac-disease/facts-and-figures/

https://celiac.org/about-the-foundation/featured-news/2016/08/20-things-you-might-not-know-about-celiac-disease/

https://celiac.org/about-celiac-disease/celiac-disease-in-children/

And refer also to the link I gave you earlier about the celiac antibody panel tests that can be run.

Also, there is a company called Imaware that offers home celiac test kits for about $100 USD. It involves a finger prick blood sample that is then sent to a lab.

And concerning consults with dieticians, some have good awareness and can help with planing meals that avoid gluten. The most helpful dieticians are those who themselves have a gluten-related disorder.

Edited January 5, 2022 by trents

[Camyblue7]

Thank you! I'm going to go through all this tonight. Have a GI appt with a new GI tomorrow for my younger son so I'm going to bring it up and see what her stance is.

[trents]

Keep us posted.

[Wheatwacked]

 

Wheatbelly: Total Health, by Dr Davis would be a good read for you. The effects of wheat in the general population. Dr Hyman is the head of the Cleveland Clinic's Funtional medicine and has several books. For the psycology effects, Dr Daniel Amen. They all recommend GFD though they arrived there through different paths.