Blood Test Results Show No Celiac In Delayed-Growth Child

[pricklypear1971]

No one really knows what ncgs is or does. It apparently doesn't cause the same autoimmune reaction, or damage the intestines the same way Celiac does. But they don't know WHAT IT DOES DO.

There is a stronger link between ncgs and neurological symptoms, some researchers think a genetic one. And the neuro is bad - such as lesions on the brain.

One thing to strongly consider is that children generally heal faster than adults. Children are more likely to have falsely negatives on blood work if they even temporarily change their diet. In your case, blood work is out the window. I don't know if the gut heals as fast, I would assume the two are consistent. Changing his diet even temporarily is not advisable if you plan on continuing testing.

I might also add that there are a number if kids with Celiac that may be labeled as ncgs, who do have slow growth issues. Kids are harder to test (though your situation is unique) because they have lower antibody levels in general. More kids "slip through" because they don't come up + on blood work. Some if those are dx'ed by endoscopy. Others not, especially if it was botched. Finding the damage is always a toss-up.

[nicolebeth]

No one really knows what ncgs is or does. It apparently doesn't cause the same autoimmune reaction, or damage the intestines the same way Celiac does. But they don't know WHAT IT DOES DO.

There is a stronger link between ncgs and neurological symptoms, some researchers think a genetic one. And the neuro is bad - such as lesions on the brain.

One thing to strongly consider is that children generally heal faster than adults. Children are more likely to have falsely negatives on blood work if they even temporarily change their diet. In your case, blood work is out the window. I don't know if the gut heals as fast, I would assume the two are consistent. Changing his diet even temporarily is not advisable if you plan on continuing testing.

I might also add that there are a number if kids with Celiac that may be labeled as ncgs, who do have slow growth issues. Kids are harder to test (though your situation is unique) because they have lower antibody levels in general. More kids "slip through" because they don't come up + on blood work. Some if those are dx'ed by endoscopy. Others not, especially if it was botched. Finding the damage is always a toss-up.

The neuro connection sounds bad--thanks for the information.

I changed my own diet because of GI issues, IBS (diagnosed at age 20; I'm 40 now), hypothyroidism that is supposedly not autoimmune but came after my first pregnancy in 2002 and never left, a few bouts with chronic hives (one lasting a year), but negative blood tests for celiac--neg tTG and EMA. I may have been gluten-lite (I don't remember now), though I think I'd been eating a ton of it for at least a month. It wasn't until reading all the Gary Taubes information on wheat that I was able to work on changing my diet away from gluten-reliant. I have a taste here and there, but don't know if the vertigo a few days later or PVCs or any weird stuff that might happen is from the gluten or something else. I don't want my kid to be this messed up at age 40. :-) What I know is that I have more energy with no gluten; it does not seem to be the right fuel for my body for exercise or anything else. I did notice more PVCs eating it (but other factors could have been involved). I also used to have mild panic attacks; that is far less noticeable without gluten.

Anyway, I appreciate that we shouldn't mess with my kid's diet until we know for sure. If we decide to continue with testing, he gets pizza for dinner (should make up for no bread at lunch--but, he really hasn't been eating his sandwiches for lunch--something is going on there). My husband will also work on getting himself tested.

I did get a name of a pediatric GI whom a friend used, who did trial and error for her son. The difference was, he would have a positive tTG when eating gluten and it would be negative without. And, she has celiac. But, this doctor didn't insist on an endoscopy for her son and relied on blood work and his response to the diet. Obviously, our case would be different. But, she said he seemed well-versed in celiac disease in general, and she believes he could shed light on our son's test results.

[pricklypear1971]

The neuro connection sounds bad--thanks for the information.

I changed my own diet because of GI issues, IBS (diagnosed at age 20; I'm 40 now), hypothyroidism that is supposedly not autoimmune but came after my first pregnancy in 2002 and never left, a few bouts with chronic hives (one lasting a year), but negative blood tests for celiac--neg tTG and EMA. I may have been gluten-lite (I don't remember now), though I think I'd been eating a ton of it for at least a month. It wasn't until reading all the Gary Taubes information on wheat that I was able to work on changing my diet away from gluten-reliant. I have a taste here and there, but don't know if the vertigo a few days later or PVCs or any weird stuff that might happen is from the gluten or something else. I don't want my kid to be this messed up at age 40. :-) What I know is that I have more energy with no gluten; it does not seem to be the right fuel for my body for exercise or anything else. I did notice more PVCs eating it (but other factors could have been involved). I also used to have mild panic attacks; that is far less noticeable without gluten.

Anyway, I appreciate that we shouldn't mess with my kid's diet until we know for sure. If we decide to continue with testing, he gets pizza for dinner (should make up for no bread at lunch--but, he really hasn't been eating his sandwiches for lunch--something is going on there). My husband will also work on getting himself tested.

I did get a name of a pediatric GI whom a friend used, who did trial and error for her son. The difference was, he would have a positive tTG when eating gluten and it would be negative without. And, she has celiac. But, this doctor didn't insist on an endoscopy for her son and relied on blood work and his response to the diet. Obviously, our case would be different. But, she said he seemed well-versed in celiac disease in general, and she believes he could shed light on our son's test results.

I think that gi sounds like a good lead. Call him!

And I'd venture to say your son got a double whammy of gluten intolerance. Have YOU been tested?

Sigh.

[nicolebeth]

I think that gi sounds like a good lead. Call him!

And I'd venture to say your son got a double whammy of gluten intolerance. Have YOU been tested?

Sigh.

I was tested in both 2007 and in fall 2010. The first time, I was gluten-free. The doc was the local expert, and said that my choices (with obviously negative tests) were to continue on the diet if I felt better, or to eat gluten and have an endoscopy. In Fall 2010, I got tested when the hives started. I'd been eating gluten-heavy for a month at that point, but gluten-lite before that. I saw a different GI in December 2011 who was pretty condescending about the IBS, and dismissive of the celiac tests being in any way inaccurate due to gluten-lite (obviously, he wasn't the right guy!) Most docs, I've found, hear IBS and everything else is "La-La-La-La-La". "Take more fiber. Take Metamucil. Take Miralax. Blah, blah, blah." Paleo does seem to help.

I have gone back-and-forth since sometimes I've felt better without gluten (i.e., less anxiety--but is that just fewer simple carbs?) and other times no problems. Celiac fit everything except that it was very easy for me to get pregnant. I suppose I could eat a ton of gluten for three months and then have an endoscopy (with doc #1). For my son's sake, it's easier if my husband just gets a complete panel--his family has the known celiac. I don't think I could convince my brother or mom to do it (both have GI issues) and so did my dad.

Anyway, sorry for the digression. I will be calling that GI! (We are in for Tuesday. So, a few more days of pizza and bagels ahead.)

[beachbirdie]

Back to feeling like a crazy person who is trying to see illness in her child!

You are not a crazy person looking for non-existent illness. Oh...and I digress for a moment on that one; I do not see celiac as an "illness". A celiac will thrive like anyone else if they are not exposed to gluten. Celiac is a "difference" in how the body responds to certain substances.

Keep in mind that this is a really important time in your son's growth, and it's not just his body weight/height that are affected. His nervous system and brain are also at risk from damage if he does have celiac and continues to suffer deficiencies because of it.

The docs could waste years of this precious time trying to get a "mainstream medical" answer for your son, I think a gluten-free trial is faster since they can't seem to come up with anything else.

Yes, I would do 6 months at least. Gives time for the body to heal, gut flora to start normalizing, deficiencies to correct.

Best to you!

[1974girl]

Did they test his thyroid? That showed up 4 years before the celiac in my dd. she was 7 when they found it. She went from 50% to 21% on growth. That was her only symptom. Oh and my dds celiac was only found in the duodenal bulb. All other biopsies showed normal. Thankfully the support group had me specifically request that spot.

[nicolebeth]

You are not a crazy person looking for non-existent illness. Oh...and I digress for a moment on that one; I do not see celiac as an "illness". A celiac will thrive like anyone else if they are not exposed to gluten. Celiac is a "difference" in how the body responds to certain substances.

Keep in mind that this is a really important time in your son's growth, and it's not just his body weight/height that are affected. His nervous system and brain are also at risk from damage if he does have celiac and continues to suffer deficiencies because of it.

The docs could waste years of this precious time trying to get a "mainstream medical" answer for your son, I think a gluten-free trial is faster since they can't seem to come up with anything else.

Yes, I would do 6 months at least. Gives time for the body to heal, gut flora to start normalizing, deficiencies to correct.

Best to you!

I appreciate your first comment--I agree; it's not an "illness". This is more how we've been made to feel. (Similarly, our first has ADD--that, too, is a difference rather than a disorder/illness.)

We are ready to go gluten-free, and want to wait, at this point, until we've met with this new doctor. Especially hearing that the biopsies two years ago may have been in the wrong place (if the photos they provided were of the biopsy locations). If this guy can do an immediate biopsy, we may consider that. But, a gluten-free six month trial period makes a lot of sense to us right now. We don't want to risk false negatives, especially in light of no other reason being provided for his failure to grow on a consistent curve. Just to "wait and see" is no longer an option.

Thank you!

[nicolebeth]

Did they test his thyroid? That showed up 4 years before the celiac in my dd. she was 7 when they found it. She went from 50% to 21% on growth. That was her only symptom. Oh and my dds celiac was only found in the duodenal bulb. All other biopsies showed normal. Thankfully the support group had me specifically request that spot.

Yes, they tested his TSH. That was normal. If any other biopsies are done, we will make sure they are in the duodenal bulb. I wish we had known to ask for that in June 2010. Thank you for sharing your story!

[nicolebeth]

Well, we're in a bit of a hold-up; new GI wants the breath test for lactose intolerance to check for SIBO (if I have that right). Previous hospital did not provide the biopsies (just a report: "biopsies were normal"), but my husband went to get the report today (and to ensure that the slides are sent overnight (breath test is tomorrow). It turns out there was one biopsy of the duodenal bulb and one of the duodenum. But the rest were the rectum, esophagus, and not sure what else. (There was a sigmoidoscopy that day as well.) There were six biopsies total; I hope our new doc has them tomorrow.

This doc recognizes non-celiac gluten intolerance! So, that is good. I think, rather than assume it is celiac with our son, he wants to ensure that there are no other factors going on (which is responsible). We were ready to jump in and take him gluten-free, and I think we are still going to do that (unless there is a clear alternative for delayed growth), but it's good to know that there isn't something else going on (rather than being dismissed as we were two years ago).

Thanks again for all the input!