Follow-Up Testing After Being gluten-free?

[domesticactivist]

Some of you already know this but I'll give some history for everyone else...

My son is almost 11, and almost a year ago exactly he had a medical crisis that put him in emergency surgery for a hip full of fluid. This event set us on the course of exploring a gluten-free diet. It wasn't until he'd been gluten-free (actually gluten-light, since we were making mistakes) for a couple months that we discovered we'd screwed up his chances of testing for celiac.

His reactions to gluten were so obvious and his improvement on a truly gluten-free diet was so extreme (digestion problems/brain fog/learning disabilities/rhumatoid problems/bone pain all resolved, allergies & anxiety much better) that a gluten challenge for testing was out of the question. Plus he was traumatized by his experiences with doctors (he'd been hospitalized before for diarrhea, and spent 4 days in the hospital with his hip surgery) so needles aren't high on his list of things to consent to.

Anyway, we got a cheek swab done and he did have a genetic risk for celiac (though not a big one), and that combined with his symptoms was good enough for us and our doctors to decide that he's probably celiac, and if not, we'd best act as if he is anyway.

So... this leads to my question. I know most celiacs (should) get their blood tested periodically to make sure that they are not having reactions to gluten. This can uncover potential contamination that's occurring unnoticed, or verify that the diet is going well. I imagine it could also uncover other health problems.

I'm considering getting him a celiac panel, even though he's been gluten-free for 9 months. However, I'm concerned that if we do this and it is negative (as it should be for a celiac who is following the diet) that the doctors will say he's not celiac.

I also question the value of knowing the numbers, not knowing what they were in the first place. For example, if he had high numbers in the beginning and now they are low but still positive we might not know that the numbers are an improvement which takes time, and go crazy trying to figure out where we are going wrong.

There is also the possibility he never was positive in the first place, but I guess that's neither here nor there at this point.

My partner doesn't like the idea of testing him, because he really does have trauma and we already know being gluten-free makes him feel much better. I wish we'd tested in the first place, which she thinks is silly. I want to do the follow up testing because I feel like it's a piece of information that could be very valuable, and the chance of a positive despite our best efforts would be important for how we move forward.

What do you all think?

[Mizzo]

"His reactions to gluten were so obvious and his improvement on a truly gluten-free diet was so extreme (digestion problems/brain fog/learning disabilities/rhumatoid problems/bone pain all resolved, allergies & anxiety much better) that a gluten challenge for testing was out of the question. "

First if you are completely comfortable with the gluten free lifestyle (seems so based on statement above) just remember the results of blood work will not change that. A Celiac panel follow-up is not just for the antibody levels they also do a workup on your blood to check many other things. He may need to be taking vitamin supplements that you are not aware of etc...

Have a long chat with the doc, explain the situation regarding needles, let them know that you only want to do this once for all necessary tests and ask about taking a child sedative( Benadryl etc..)

FYI ,

You mentioned you've been gluten-free 9 months with a few oops, you might want to wait till the 1 yr mark (depending on when the oops were) to get a good idea of where you stand.

Since he was never tested by blood for Celiac was an allergy panel ever done to rule out other things?

[domesticactivist]

Thanks. Waiting for the year mark sounds like a good idea.

He had an ELISA done a few years before all this. His dad had done it with a different doc I had never met and didn't ask about or pass on an interpretation of the results. He was reacting to all his favorites (IgG) so he kind of discounted it. He showed high IgE for corn but we didn't understand that at the time. As a baby/toddler he had asthma and hives from dust, dairy, and mystery stuff.

He always had bad 'seasonal allergies' and about a year before all this we did start seeing an allergist. He got scratch tests and started allergy shots for pretty much all grasses, weeds, and trees. (3 shots 3 x per week for a ling time, now he is almost done with them and down to 3 shots every 2 weeks)

The allergist didn't even test for corn. When we reviewed the elisa and cut out corn a couple months after going gluten-free his 'seasonal' allergies got a million times better!

What allergy testing would you recommend?

[pain*in*my*gut]

First if you are completely comfortable with the gluten free lifestyle (seems so based on statement above) just remember the results of blood work will not change that. A Celiac panel follow-up is not just for the antibody levels they also do a workup on your blood to check many other things. He may need to be taking vitamin supplements that you are not aware of etc...

Have a long chat with the doc, explain the situation regarding needles, let them know that you only want to do this once for all necessary tests and ask about taking a child sedative( Benadryl etc..)

This, exactly. He should be tested for vitamin and mineral deficiencies in addition to the Celiac ABS. I wouldn't worry about what the doctors say about whether or not he is a "true" Celiac. You know that he was terribly ill when eating gluten and now he isn't, there is your dx right there.

Explain to him that it is normal to be nervous and scared about blood testing, but it is something that everybody has to do at some point. I wouldn't let his fear of needles/doctors keep you from providing him with the best treatment possible (easier said than done, I know)! I suspected my son was anemic 6 months ago, took him in to the doc for a finger stick. He threw such a massive fit that I just said forget it. Now I wish I had just done held him down and done it, because we could have possibly caught Celiac anemia then (if he has it, which I suspect he does).

[nmlove]

I agree with having a long talk with the doctor. Follow-up tests are important, not just to keep an eye out on the gluten-free diet but from a nutritional standpoint as well. My boys are checked every 6 months: ttg levels, vitamin d, iron among a few other things (depending on the exam and what we go over). The doc did say this last time that once their ttg levels were normal for two visits in a row they could start having annual check-ups instead of bi-annual visits. This last visit finally showed a normal level on my 4 year old (woohoo!) and that was a year and a half post-diagnosis. One, his ttg was up there at diagnosis and two, we had a big CC issue that raised his levels again at 9 mos out.

Also, with frequent check-ups I find that their doc keeps me up-to-date on celiac findings, makes sure nothing else is going on and is very proactive. For instance, he has his patients undergo a bone scan (noninvasive, very simple) to check their bone density around early elementary age to make sure everything looks good and the kids go into puberty with their full potential. My oldest (6 years old) had this done in late spring and was found to be low and so now he sees an endocrinologist to get his bones back to those of a six year old.

As for the shots, honestly, it's a part of life. I had to have shots as a child, weekly ones, and I hated them. But, as a parent, I know that it's such a "little" thing really when you think about other tests that could be done. So if it helps rule something in/out then we just deal with it. I always have some tears but really my kids do well (even my two year old) by me staying calm, matter-of-fact, let them know it'll happen (I have more tears if I keep it hush-hush), and promise a small treat after.

As far as not knowning numbers, couldn't the first set be a baseline to off of? Something to talk with your doc about. Good luck!

[domesticactivist]

Well it's November (1 year gluten-free) and I did take him in to our new doctor. She has ordered a celiac panel for him as a follow up, and is also ordering an ELISA so we can compare the results to the past one for what it's worth. My son feels a bit betrayed because I had told him at first that if we went as gluten-free as strict celiacs do he wouldn't have to have the blood testing. He kind of took that to mean that he'd never have to have a blood test again. A silver lining is that she did OK us discontinuing the allergy shots, so that will be nice.

I do feel bad making him have the test, however, IF he really is celiac and we didn't test, but he was being "silently" exposed we'd never know it otherwise. A negative test will mean that what we are doing is good enough, and I want that peace of mind. He hasn't had the blood draw yet, we're waiting because in order to get both tests done on the same draw more paperwork had to happen.