Go Gluten Free or Not?

[mefororfo]

In November I started my son on a gluten free diet in hopes that it would help years of frustration with chronic GI issues - constipation that has lead to a megacolon and encopresis. I was shocked at how he has been impacted by this diet change. For the first time since I've had him (he's adopted from foster care), his GI system has operated somewhat "normal"! We also saw some other issues (eczema itching, bedwetting) resolve. I asked his pediatrician to order some bloodwork due to some behavioral issues he has, including for celiac, just to rule out any underlying issues that may be contributing to his behavior (ADHD, PICA). I mentioned to her that he had been off gluten for a few weeks at that point but she did not think that would be a problem for the blood test. I held off on the blood work for a few days and let him go back onto gluten in hopes that it would help something show up in his bloodwork if indeed he had celiac. Within a few hours of eating gluten again, he had a  huge emotional outburst, was sobbing because his head hurt so bad and then fell asleep crying because of a "tingling" that was moving down his spine. The headache continued for several days and the constipation returned within a day or two. When we did do the blood work, his blood test for celiac came back normal. He did however show elevated AST (liver) and low ferritin (iron). Now he is off gluten again and the pediatrician started him on an iron supplement. We follow-up with her in a few weeks and see his GI specialist in a month. I'm wondering if I should be letting him eat gluten now so that it is in his system for any future tests that may be ordered? Would the AST and ferritin levels be something indicative of celiac? Does his reaction to eating gluten sound consistent with a celiac response to gluten? I certainly don't want to put my son through more pain if it's unnecessary, but I'd like to know if celiac is what is causing his issues so that he has that knowledge for his future and we know the best way to help him. 

[Jmg]

Hi and welcome

This is a tough decision. It's clear from his reactions to the gluten-free diet that he has an issue with gluten so celiac or not he needs to be off it long term. There's no treatment as such other than the diet so some would argue that there's little point in prolonging his suffering.  However I think you've put your finger on the crux of the issue in your final para:

7 hours ago, mefororfo said:

I certainly don't want to put my son through more pain if it's unnecessary, but I'd like to know if celiac is what is causing his issues so that he has that knowledge for his future and we know the best way to help him. 

If celiac is diagnosed he and his physicians will know this for the rest of his life and can plan accordingly. He can have nutrient levels monitored and that diagnosis will help him stay strictly on the diet in the teenage years and beyond when the availability and attractiveness of straying from the diet will increase and you're no longer always around to help him. 

If you and he can do it then, in my view, now is the time to push forward and get as definitive diagnosis as possible.  The challenge will be unpleasant, but it does get easier as time goes on. It will also be easier now than it would be after another year or more off gluten. He'll need 8-12 weeks eating some gluten each day.

You can get help and support on here if you need it. 

Finally, keep a journal during the challenge and when testing is over, dont be afraid to go back to gluten free even if the celiac test is negative. Some people don't test positive but gluten is still a problem for them. I'm one of those people!

Best of luck whatever you decide 

Matt 

 

[cyclinglady]

13 hours ago, mefororfo said:

In November I started my son on a gluten free diet in hopes that it would help years of frustration with chronic GI issues - constipation that has lead to a megacolon and encopresis. I was shocked at how he has been impacted by this diet change. For the first time since I've had him (he's adopted from foster care), his GI system has operated somewhat "normal"! We also saw some other issues (eczema itching, bedwetting) resolve. I asked his pediatrician to order some bloodwork due to some behavioral issues he has, including for celiac, just to rule out any underlying issues that may be contributing to his behavior (ADHD, PICA). I mentioned to her that he had been off gluten for a few weeks at that point but she did not think that would be a problem for the blood test. I held off on the blood work for a few days and let him go back onto gluten in hopes that it would help something show up in his bloodwork if indeed he had celiac. Within a few hours of eating gluten again, he had a  huge emotional outburst, was sobbing because his head hurt so bad and then fell asleep crying because of a "tingling" that was moving down his spine. The headache continued for several days and the constipation returned within a day or two. When we did do the blood work, his blood test for celiac came back normal. He did however show elevated AST (liver) and low ferritin (iron). Now he is off gluten again and the pediatrician started him on an iron supplement. We follow-up with her in a few weeks and see his GI specialist in a month. I'm wondering if I should be letting him eat gluten now so that it is in his system for any future tests that may be ordered? Would the AST and ferritin levels be something indicative of celiac? Does his reaction to eating gluten sound consistent with a celiac response to gluten? I certainly don't want to put my son through more pain if it's unnecessary, but I'd like to know if celiac is what is causing his issues so that he has that knowledge for his future and we know the best way to help him. 

You need to get copies of his lab results (good practice).  What celiac tests did he have?  The common and standard screening TTG IgA is good but does not catch all celiacs (like me) or small children.  Best to have the EMA and DGP tests as well while he is on a gluten diet for 8 to 12 weeks.      Yes, 8 to 12 weeks!  It can take that long for antibodies to be released and circulate in the bloodstream.  The time is less (2 to 4 weeks) if you go directly to an endoscopy but that can be hard to get insurance to go for that without a positive on a blood test (but not impossible because some people are seronegative).  

Low ferrtin and elevated AST can indicate celiac disease.  The iron supplements can help in the short term, but once off them, ferritin levels will plummet if he does have celiac disease.  So, I am not sure why your doctor prescribed them now.  It can confuse the testing or diagnostic outcome.  It is obvious that she is not celiac-savvy and did not take the time to do a little research.  I would seriously look for another doctor.  Who knows how much she would miss on in another illness.  Not all doctors can know everything, but my ER doctor neighbor says that Google is used in his ER, along with consultations with peers.  

A firm diagnosis can be very helpful in keeping your son safe at school.  Please research more, so that you can make the right decisions with the help of knowledgeable doctors.  

My heart goes out to you.  

[mefororfo]

Thank you cyclinglady and Jmg for your response. I truly appreciate you taking the time to lay out some of your thoughts and experiences for me. The blood tests ordered were IGA (his result was 106 mg/dL) and TTG IGA (his result was 0.2U/mL). Plus a variety of other tests that I don't think are specific to celiac - ferritin, cbc, tsh, metabolic panel. He's 10 years old, so according to the reference range for his age, I think it is normal? 

I'm not sure what his doctor's plan of care is beyond the supplement, but since he already has a GI specialist that he sees normally and we see her relatively soon, I plan on explaining more at both of those upcoming appointments about his reaction to the diet and gluten over the past few months. I am thankful his pediatrician was willing to run the tests per my request, and am confused why the GI specialist he's seen has never done any bloodwork on him. They really have only focused on the constipation, not the cause of it. And maybe that's because of his adoptive history, they assumed that it was more behavioral then medical in origination. Perhaps I just haven't been asking the right questions and sharing the right information. He's a kid that is a chronic complainer, always having an ache or pain to share, and we have at times just brushed that off as part of his personality. I am wondering though if some underlying condition is causing him to truly feel unwell and he just doesn't know how to communicate that (and I feel terrible that that might be the case). Depending on those follow-up appointments, I may begin reaching out to some different doctors for their opinions. I fortunately know several people with celiac treated by GI's in my area and I think they would be good resources for this.

I think I am leaning towards letting him eat normally for the next few months, as much as I hate that it means we will probably see a resurgence in many of his issues. Maybe it will confirm for me that there is definitely a reaction to gluten if I allow him to eat it and we experience similar results again. Overall, I guess doing it for the next few months is relatively short-term and I should be thankful I now know a long term solution to help him with some of his issues (whether it be celiac or sensitivity). I agree that as he moves into teenage years and as we navigate school, it would be helpful to have some definitive diagnosis if he truly has this.