Can You Explain These Results?

[Jentu]

I think I've asked this before. Sorry, if I have.

Long story short, about 3 years ago I started suspecting my oldest child had a problem with gluten. Since then, we've done several gluten free trials with results varying from ho-hum to a pretty big difference. My doctor said it was unlikely a problem with her. I let it rest.

Last year, my now 5 year old (middle child) started showing mild symptoms, so I asked to get her checked. Here are the results in a nutshell:

TTG IGG: NEG

TTG IGA: NEG

Gliadin IGG: Positive ( >24 )

Gliadin IGA: Negative

First doctor: She may have a borderline case and it may or may not benefit her to go gluten-free.

Second doctor: The one positive test suggests she's having trouble digesting something, but it's probably not wheat.

I also have a baby girl who was born last July. Since her birth, I've pretty much let the gluten free thing slip from my mind. That was until I took her in (late by at least a month) for her 9 month appointment, when I had found out her weight gain had slowed considerably. She had dropped about 30 percentage points on her height/weight chart, and she was having several runny bowel movements a day. I didn't even consider wheat as an issue, I had just assumed she was either getting more active or I wasn't feeding her right. About a month later, I decided to take the kids off of all gluten (again) just to settle the issue. I took the baby off of all wheat products as well, not because I thought she needed to, but I figured I might as well. Immediately, her stool went back to normal and she started gaining weight.

So in any case, it looks like we're gluten free for good since the baby appears to have an allergy or intolerance. My (gluten free) 5 year old is starting kindergarten this year though and I can't guard her diet 100% of the time since she won't be at home. I'll probably just tell her teachers that she has a wheat allergy for simplicity's sake. It may not exactly be true, but obviously the truth is more complicated than I care to explain to every single person that she comes in contact with. The tests, in my layman's opinion, seem to suggest she has an intolerance at the very least. Would I be going overboard in telling people this and acting as though she has an official diagnosis, when she has not? Should I ask for a second opinion? Do you think I should push for testing for my youngest, even though she is doing fine now?

Thank you very much, I'm eager to hear what you all have to say.

[Guest Jacqadactle]

I think I've asked this before. Sorry, if I have.

Long story short, about 3 years ago I started suspecting my oldest child had a problem with gluten. Since then, we've done several gluten free trials with results varying from ho-hum to a pretty big difference. My doctor said it was unlikely a problem with her. I let it rest.

Last year, my now 5 year old (middle child) started showing mild symptoms, so I asked to get her checked. Here are the results in a nutshell:

TTG IGG: NEG

TTG IGA: NEG

Gliadin IGG: Positive ( >24 )

Gliadin IGA: Negative

First doctor: She may have a borderline case and it may or may not benefit her to go gluten-free.

Second doctor: The one positive test suggests she's having trouble digesting something, but it's probably not wheat.

I also have a baby girl who was born last July. Since her birth, I've pretty much let the gluten free thing slip from my mind. That was until I took her in (late by at least a month) for her 9 month appointment, when I had found out her weight gain had slowed considerably. She had dropped about 30 percentage points on her height/weight chart, and she was having several runny bowel movements a day. I didn't even consider wheat as an issue, I had just assumed she was either getting more active or I wasn't feeding her right. About a month later, I decided to take the kids off of all gluten (again) just to settle the issue. I took the baby off of all wheat products as well, not because I thought she needed to, but I figured I might as well. Immediately, her stool went back to normal and she started gaining weight.

So in any case, it looks like we're gluten free for good since the baby appears to have an allergy or intolerance. My (gluten free) 5 year old is starting kindergarten this year though and I can't guard her diet 100% of the time since she won't be at home. I'll probably just tell her teachers that she has a wheat allergy for simplicity's sake. It may not exactly be true, but obviously the truth is more complicated than I care to explain to every single person that she comes in contact with. The tests, in my layman's opinion, seem to suggest she has an intolerance at the very least. Would I be going overboard in telling people this and acting as though she has an official diagnosis, when she has not? Should I ask for a second opinion? Do you think I should push for testing for my youngest, even though she is doing fine now?

Thank you very much, I'm eager to hear what you all have to say.

If you're on the gluten free diet already, the test will be negative. You also have to have eaten gluten within the past few days (usually around 2 days) and had a decent amount of it. If it was an intolorance, there would not be antibodies. Celiacs is labeled an autoimmune disease because it has these antibodies. So, if your children have them, chances are they are positive for celiacs. It's hard to diagnose because it is so patchy. My advice would be to have them eat a lot of gluten right before getting re-tested. Also, very important, insist on a FULL panel test to be run. A lot of doctors don't immediately do that, you'd be surprised. Remember, celiacs is hereditary passed in the genetic code, so make sure you are tested as well. Your baby sounds like a pretty textbook case with the growth and stomach issues. If it was just an intolorance, it wouldn't have affected the growth like that, since that comes from the nutritional deficiency celiacs causes.

And still, if they are feeling better on the gluten-free diet already and you don't mind not having the official diagnosis, then why not stick with it then?

[momxyz]

hi Jentu,

I'm another mom .... not exactly in the same place you are but I can very much appreciate your dilemma.

When my daughter was eleven she had serologies done, because she had fallen off her growth curve and had tummy aches and loose stools. The antigliadin IgG was the only thing that was positive. (borderline in her case.) If you read up on the antibody testing, anti gliadin IgG is considered to be very sensitive - but - not so specific; ie it can be positive in the absence of what is considered confirmatory for celiacs - a positive biopsy. This approach, although it represents for the most part mainstream medical practice, leaves out the possibility of what is known as non-Celiac Gluten sensitivity. NCGI is just beginning to come onto the radar screen so to speak, in standard medical practice.

In my daughters case, she did end up getting referred for upper,lower GI and Bx - all neg. ie not Celiac according to established criteria.

6 years down the road she is suffering with symptoms that as they presented were not obviously linked to wheat or celiac or gluten.... but the more I read, the more I began to connect the dots. In this current round of medical visits, I recently mentioned the possibility of the role of gluten intolerance. while I didn't totally get poo-pooed, I didn't get the feeling that they put much weight into my ideas either.

My daughter has been working to be gluten-free for a little over 3 weeks and has seen some improvement of her symptoms. I have pretty much been thinking all along that if the diet is helping, who cares about a confirmed diagnosis? There are many on this board that share this view.

But there are others who needed a diagnosis for their own specific reasons.

I myself am beginning to have second thoughts about not pursueing a diagnosis... and this within the last 24 hours. (I respectfully claim my female right to be as changeable as the weather!)

W/O going into the details, my daughters providers in the next month and a half may be pointing her towards medical treatment (drugs) that although might (or might not) alleviate her symptoms, they do not come w/o possible side effects. But, if gluten sensitivity (even if not outright celiacs) is the root cause of the problem...then these drugs would only mask the symptomology w/o really solving the problem.... and maybe add other side effects to deal with.

I am trying to figure out how I can engage her health care providers into considering gluten as the root of the problem. And I am beginning to think that if I went to an outside source (like Enterolab) and got some diagnostic testing - which indicated either celiac or gluten sensitivity - that I might be able to get their attention, and make them pause before prescribing.

I don't konw what I am going to do, to be honest. The testing I am considering would be genetic testing for specific HLA genes/proteins that are associated with Celiac and/or gluten sensitivity. This would be an entirely out of pocket expense and that could be an issue.

I have no intent on putting my daughter back on a diet that intentionally includes gluten. But, once you go gluten free, there is a much greater possibility that the standard antibody/biopsy tests will be negative, even tho you possess gluten intolerance. (makes sense, you've removed the root cause of the problem!!)

Even tho I've gathered a ton of facts in the last month, its still about as clear as mud about what to do. With the exception of staying gluten free!

If you were to pursue testing, I would think genetic testing for the whole bunch of you might be worth considering. Celiac is highly genetic. It looks like all three of your kids are affected by at least gluten sensitivity to one degree or another... you might consider testing yourself along with them.

[momxyz]

Your baby sounds like a pretty textbook case with the growth and stomach issues. If it was just an intolorance, it wouldn't have affected the growth like that, since that comes from the nutritional deficiency celiacs causes.

And still, if they are feeling better on the gluten-free diet already and you don't mind not having the official diagnosis, then why not stick with it then?

hi Jacqadactle,

respectfully disagreeing about the idea that an intolerance that is not Celiac's does not have the propensity to negatively affect growth.

While non Celiac gluten intolerance lacks the autoimmune component, and the corresponding destruction of the villi, it can cause bowel irritability, which by itself can interfere with absorption of nutrients, and therefore with growth. Perhaps not to the degree of a child with Celiacs, but the propensity is there. And what is worse, since once Celiacs is ruled out, the family receives no guidance to eliminate gluten, the root cause of the childs problem is not eliminated.

In my daughter's situation, while she did not have Celiacs, she clearly had bowel irratiblity. Having read pediatric journals myself, I knew that kids with any kind of malabsorption syndrome need to consume MORE food than a normal kid to maintain a normal growth rate. so I immediately began encouraging an eating habit of small frequent meals throughout the day. At the same time her pediatric GI prescribed a med aimed at calming the bowel. It worked, but not without side effects. I do not blame him, because that was the state of the knowledge and medical practice at the time.

so she got back on her growth curve, but is experiencing significant sequalae today. I wonder where we would be today, if we had simply gone gluten free 6 years ago.

I have posted references re non Celiac gluten intolerance elsewhere but will repost on this thread if folks are interested.

[ravenwoodglass]

One thing that always has to be kept in mind with young children and testing is that they have an even higher rate of false negatives on blood tests than adults do. False postive rates are very rare. If she has a positive test she likely has an issue with gluten. Until better testing is available in this country sometimes dietary response is a very important part of the diagnostic process, even more so than the serology or biopsy. It sounds like the dietary response has been good.

As far as gene testing goes, it can also provide some valuable information but some labs only check for the 2 commonly recognized celiac related genes. Unfortunately there have recently been 'discovered' to be at least 7 more but not all doctors are up to date on this. Gene testing is in reality in it's infancy and while it can be part of the diagnosis process it can't be relied upon as the sole yes or no in the question of whether a person has celiac or not.

If your child has been gluten free for any length of time the challenge needs to be at a minimum of between 3 and 6 months to have any chance for the antibodies to build up enough to be present at a high enough level for diagnosis. A couple of weeks just won't be long enough.