Interpreting test results

[deanna1ynne]

Backstory: 8 yo has refused to bread, pizza, muffins, pasta, etc. since she was 3. We didn't really think it was a big deal until she told us at 7 that it hurt her stomach. So we talked with her doc, got a celiac panel ordered, and made her eat wheat for 4 weeks beforehand. She cried everyday for two weeks, and was on the verge of not eating ANYTHING anymore, saying it hurt too badly, but then right at 2 weeks, she stopped complaining, stopped crying, and seemed fine again. So I figured maybe it was a false alarm and almost quit the gluten trial. At the urging of friends we finished and had her tested.

Currently, we have test results back; the lab tech said, "It's showing a negative, but it actually looks like she might have it."

igg < 0.8

iga transgluten 154.7

d-gliaden igg >250

d-gliaden iga 14.9

?? What on earth does that mean? I can't get ahold of the doc, but the pressing question I have is if I have to continue making my child eat wheat for continued testing? As soon as she got the blood draw last week, she went back to refusing to eat any wheat, but I don't want to have to start another 6-8 week gluten diet from scratch if they will need to see continued gluten in her system for further testing.

[plumbago]

6 minutes ago, deanna1ynne said:

Backstory: 8 yo has refused to bread, pizza, muffins, pasta, etc. since she was 3. We didn't really think it was a big deal until she told us at 7 that it hurt her stomach. So we talked with her doc, got a celiac panel ordered, and made her eat wheat for 4 weeks beforehand. She cried everyday for two weeks, and was on the verge of not eating ANYTHING anymore, saying it hurt too badly, but then right at 2 weeks, she stopped complaining, stopped crying, and seemed fine again. So I figured maybe it was a false alarm and almost quit the gluten trial. At the urging of friends we finished and had her tested.

Currently, we have test results back; the lab tech said, "It's showing a negative, but it actually looks like she might have it."

igg < 0.8

iga transgluten 154.7

d-gliaden igg >250

d-gliaden iga 14.9

?? What on earth does that mean? I can't get ahold of the doc, but the pressing question I have is if I have to continue making my child eat wheat for continued testing? As soon as she got the blood draw last week, she went back to refusing to eat any wheat, but I don't want to have to start another 6-8 week gluten diet from scratch if they will need to see continued gluten in her system for further testing.

Can you post the reference ranges?

[deanna1ynne]

2 minutes ago, plumbago said:

Can you post the reference ranges?

They didn't give me any (it was over the phone). I'm sorry!

[plumbago]

3 minutes ago, deanna1ynne said:

They didn't give me any (it was over the phone). I'm sorry!

Ask to have the paper copy of the results sent to you (mail, portal, fax). It's the only way. Or go in and pick them up.

[trents]

Until we have reference ranges it is impossible to comment on her test scores. Different labs use different reference ranges. Do you have access to her medical chart and test results online? 

The official guidelines for a pretest gluten challenge is:

1. Blood antibody test: eating an amount of gluten the equivalent of two slices of wheat bread daily for 6-8 weeks.

2. Endoscopy/biopsy of the small bowel lining: eating an amount of gluten the equivalent of two slices of wheat bread daily for at least two weeks. This kind of test is considered the gold standard of celiac disease diagnosis.

It is also possible she has NCGS (Non Celiac Gluten Sensitivity) which has many of the same symptoms as celiac disease but does not damage the mucosa of the small bowel. Does your daughter have other celiac symptoms such as diarrhea or constipation when she is consuming gluten? The complicating factor in all this is that she took herself off of gluten (or at least major sources of it). 

The odd part of all this is that she quit complaining of stomach aches after being on gluten for two weeks. We do know that many celiacs are "silent" in that they have few if any GI symptoms, even though there is damage going on the small bowel villi. Perhaps she built up a tolerance to gluten during the two weeks that caused her to become asymptomatic. Many or most celiacs discover that once they have been off gluten for a significant amount of time they lose all tolerance they originally had and getting "glutened" now makes them violently ill. Perhaps that might work in reverse. That is to say, persistent and consistent exposure to gluten would restore some degree of tolerance. That is not the same as saying it does no more damage to the SB villi since the "silence" is not the same a no damage.

The other thing I would suggest is to get genetic testing done for celiac disease. Having the genes does not equate to having celiac disease but it does equate to having the potential for it. If she doesn't have the genes then you can look elsewhere if her GI symptoms reappear with gluten consumption.

Edited October 14, 2021 by trents

[deanna1ynne]

2 minutes ago, trents said:

Until we have reference ranges it is impossible to comment on her test scores. Different labs use different reference ranges. Do you have access to her medical chart and test results online? 

The official guidelines for a pretest gluten challenge is:

1. Blood antibody test: eating an amount of gluten the equivalent of two slices of wheat bread daily for 6-8 weeks.

2. Endoscopy/biopsy of the small bowel lining: eating an amount of gluten the equivalent of two slices of wheat bread daily for at least two weeks. This kind of test is considered the gold standard of celiac disease diagnosis.

It is also possible she has NCGS (Non Celiac Gluten Sensitivity) which has many of the same symptoms as celiac disease but does not damage the mucosa of the small bowel. Does your daughter have other celiac symptoms such as being well behind the growth curve for her age?

The odd part of all this is that she quit complaining of stomach aches after being on gluten for two weeks. We do know that many celiacs are "silent" in that they have few if any GI symptoms, even though there is damage going on the small bowel villi. Perhaps she built up a tolerance to gluten during the two weeks that caused her to become asymptomatic. Many or most celiacs discover that once they have been off gluten for a significant amount of time they lose all tolerance they originally had and getting "glutened" now makes them violently ill. Perhaps that might work in reverse. That is to say, persistent and consistent exposure to gluten would restore some degree of tolerance. That is not the same as saying it does no more damage to the SB villi since the "silence" is not the same a no damage.

 

Ok, I will drive over to the hospital and ask for a print-out. Thank you. I figured the numbers would be "standardized" somehow. But it just goes to show how little I know about tis.

She's not below the growth curve per se, but we've always affectionately called her the runt, because she's around the 40th %ile in size, compared with all three of her siblings (and extended family) who are 80-90th %ile in size. (She's the same size as my 6 yo, for example.)

I will report back when I have more info. Thank you for your gracious and patient responses so far. I'm sorry that I am so ignorant, currently! I haven't done as much research as I could have, because I was sort of just "ruling out" celiac, so I'm a bit in panic mode. It just never occurred to me before that she might actually have it - I just figured she didn't like wheat!

[trents]

deanna, 

Please re-read my post as I did some significant editing, apparently while you were typing a response. One of the things I suggested was getting genetic testing done to establish the potential for celiac disease. There are at this time two, maybe three, genes that have been linked to the potential for developing celiac disease. The other thing is she might not have celiac disease but NCGS which also involves gluten.

Edited October 14, 2021 by trents

[deanna1ynne]

Thank you. I reread your reply and will continue to try to get a hold of the doctor and discuss genetic testing. In the meantime, here are the results I have:

Thank you. I reread your reply and will continue to try to get a hold of the doctor and discuss genetic testing. In the meantime, here are the results I have.

 She flagged two super high and one borderline it seems. It’s just not clear to me if all of them have to be flagged, if some have more “weight“ than others, or what it actually means.

 

 

[trents]

Note that “L” and “H” symbols (High/Low).

Her tGG-IGA is "H" and unequivocally positive (clearly a positive test result). Her DG-IgG is also high.

The center piece of celiac disease antibody testing is the tTG-IGA. It is considered to combine the best of being specific for celiac disease with good sensitivity.

I would say without hesitation that she has celiac disease.

[RMJ]

One does NOT have to have all of the tests positive to have celiac disease.  One is enough.  In your daughter’s case, two are positive and are highly positive - ten times the normal level.  For many doctors that would be enough to diagnose celiac disease without putting her through an endoscopy.

With those results I don’t think genetic testing would be terribly useful.

[trents]

I would also suggest that you and the child's father and her siblings get tested for celiac disease. While different research studies over the years have turned up different results, and significantly different, one large recent study done by the Mayo Clinic found that 44% of the first degree relatives of those with celiac disease also had celiac disease. Other studies put the likelihood at about 10%. And remember those "silent" celiacs. You won't necessarily be symptomatic, at least in the early stages of the disease.

Edited October 14, 2021 by trents

[deanna1ynne]

Oh. Wow. Ok. Thank you.

I have a lot to think about and read about now, I guess.

[trents]

10 minutes ago, deanna1ynne said:

Oh. Wow. Ok. Thank you.

I have a lot to think about and read about now, I guess.

Yes. It is typically overwhelming at first. We've all "been there, done that." Another big piece of this is educational. Learning where and how gluten shows up in the food supply. For instance, would you expect to find wheat/gluten in soy sauce or Campbell's tomato soup? Read their ingredient labels and you will discover it's there. Cutting down on gluten is not hard. You simply eliminate major sources such as bread and pasta. But eliminating gluten from the diet is much more challenging. Yet that is the goal necessary for healing and health. And this will have a significant impact on your daughter's social life, indeed, your whole family's social life. What do you do when family and friends ask you over for dinner or to go out to a restaurant? I don't want to frighten you but these are realities you will be needing to address.

[deanna1ynne]

So I called the celiac clinic at childrens and got an appointment with a celiac doc and a nutritionist next month, and the rest of our family is going this afternoon for blood draws for celiac panels.

What are my next steps likely to look like? Should my 8 yo continue eating wheat for four weeks until she sees the celiac doc and we get next steps from him? How likely are they to do an endoscopy or something else like that? I read it's the "gold standard," but also falling out of use with children when a blood test shows 10X over the normal limit in the tGG-IGA, which ours would be?

Obviously, I know that nobody can tell us for sure what the doc will say or do. I'm just looking for general ideas.

[plumbago]

For now, at least until the appt, your child probably should continue eating gluten containing products such as one or two pieces of toast per day, and that's it. If you are going to a gastroenterologist, he or she may well recommend an endoscopy to diagnose, I can't say for sure. For adults, it sure is difficult to walk in to a GI office with GI complaints and not walk out with an order for an endoscopy! OTOH, he or she may recommend just going ahead and go gluten free. Hard to say. You say "celiac doc," is that a specialist in celiac disease? If so, cool! You may get some really good care.

The rest of the family hopefully has been consuming gluten regularly, ahead of your blood tests.

Plumbago

[trents]

In your case, since your daughter seems to not be having dramatic symptoms anymore while consuming gluten, I would keep her on it until that appointment in case the doc wants to do a scope and biopsy.

Having said that, no one, even most physicians I believe, would be unwilling to conclude that your daughter has celiac disease in view of her strong antibody test positives, even though they still might have wanted to do the scoping. So, if you felt it prudent to begin the gluten free effort now it would not likely be a mistake.

[trents]

10 minutes ago, trents said:

In your case, since your daughter seems to not be having dramatic symptoms anymore while consuming gluten, I would keep her on it until that appointment in case the doc wants to do a scope and biopsy.

Having said that, no one, even most physicians I believe, would be unwilling to conclude that your daughter has celiac disease in view of her strong antibody test positives, even though they still might have wanted to do the scoping. So, if you felt it prudent to begin the gluten free effort now it would not likely be a mistake.

Particularly in the UK, most physicians forego the endoscopy/biopsy when antibody scores are 10x normal. If you don't feel it is necessary to go through with the endoscopy/biopsy I would go armed with some information like that to justify your position. 

Edited October 14, 2021 by trents

[deanna1ynne]

Sorry for the confusing; yes, “celiac doc” many celiac specialist.

Thank you for sharing that information about doctors in the UK. Do you know if it is also the case in the USA? (And my apologies if I accidentally posted on a UK board incorrectly!)

i think we’ll try to keep her eating gluten, in any case (until we see the specialist, only, of course.)

[deanna1ynne]

She did tell me tonight, when we talked about it, “it’s ok. As long as I only eat a little, I can handle it hurting.” So at least she’s agreed to keep eating it for another month.

Thank you all so much. I feel so much calmer than before, at least understand a little better now.

[RMJ]

8 minutes ago, deanna1ynne said:

Sorry for the confusing; yes, “celiac doc” many celiac specialist.

Thank you for sharing that information about doctors in the UK. Do you know if it is also the case in the USA? (And my apologies if I accidentally posted on a UK board incorrectly!)

i think we’ll try to keep her eating gluten, in any case (until we see the specialist, only, of course.)

We’re not a UK board, just have UK participants, as well as many other countries.

The European Society for Paediatric Gastroenterology, Hepatology and Nutrition is the organization who has recognized that biopsies may not be necessary in all children.  I’ve attached a 2020 document they issued that has their recommendations.  

ESPGHAN pediatric celiac guidelines

The equivalent US group still thinks biopsies are necessary:

NASPGHAN pediatric celiac guidelines

[trents]

1 minute ago, deanna1ynne said:

She did tell me tonight, when we talked about it, “it’s ok. As long as I only eat a little, I can handle it hurting.” So at least she’s agreed to keep eating it for another month.

Should be the equivalent of two slices of wheat bread daily for 2 weeks. That is the guideline. I would hate to see you put her through an endoscopy in vain. When is the appointment? If the doc wants to do an endoscopy/biopsy just have him schedule it out at least that far. Or, at least that is one option.

Another thing to consider, especially since your daughter is behind the growth curve, if wheat products are being excluded from her diet she will not be getting the vitamins that are included in all wheat flour used in the food industry in the USA. Wheat flour is required to be "enriched" in the USA. I am assuming you live in the USA. My point being, you might want to have her start taking some gluten free vitamins. And not all of them are gluten free so you need to check on that.

[RMJ]

11 minutes ago, deanna1ynne said:

She did tell me tonight, when we talked about it, “it’s ok. As long as I only eat a little, I can handle it hurting.” So at least she’s agreed to keep eating it for another month.

Thank you all so much. I feel so much calmer than before, at least understand a little better now.

The poor dear!  Some adults who think they will soon be giving up gluten make sure to eat their favorite gluten-rich foods as they await their official diagnosis.  Can you get/make something special for her to eat, possibly for the last time?

2 minutes ago, trents said:

Should be the equivalent of two slices of wheat bread daily for 2 weeks. That is the guideline. I would hate to see you put her through an endoscopy in vain. When is the appointment? If the doc wants to do an endoscopy/biopsy just have him schedule it out at least that far. Or, at least that is one option.

She’s only 8, perhaps a smaller “dose” would be sufficient?

[RMJ]

Here is some advice from Massachusetts General Hospital for the amount of gluten children need to eat for a gluten challenge:

Gluten challenge

[trents]

deanna, didn't you say in your first post that after a certain point your daughter was eating gluten with no discomfort?

[deanna1ynne]

22 minutes ago, trents said:

Another thing to consider, especially since your daughter is behind the growth curve, if wheat products are being excluded from her diet she will not be getting the vitamins that are included in all wheat flour used in the food industry in the USA. Wheat flour is required to be "enriched" in the USA. I am assuming you live in the USA. My point being, you might want to have her start taking some gluten free vitamins. And not all of them are gluten free so you need to check on that.

We live a whole foods, plant based lifestyle, so I've always ground my own flour for her (so not enriched). Because of our lifestyle, we do bloodwork regularly to check for nutrient deficients, and she's generally been alright, but we do use some supplements as well. I will check to see if they are gluten free. Thanks for this reminder. 

20 minutes ago, RMJ said:

The poor dear!  Some adults who think they will soon be giving up gluten make sure to eat their favorite gluten-rich foods as they await their official diagnosis.  Can you get/make something special for her to eat, possibly for the last time?

Since she kind of went gluten-free of her own volition at 3 years old, most of her favorite treats are actually gluten free already! (I grind a lot of garbanzo beans and lentils into flour and make waffles and bread and the like out of those pulse flours for her.)  When we got her eating gluten for this challenge, it wasn't hard to convince her to eat it - I just made cookies with tons of sweetener and chocolate chips. The problem quickly became that she wouldn't eat anything else.... Two cookies a day were enough wheat, i hoped, but she sat through every real meal just picking at her food saying that her stomach hurt. 

14 minutes ago, trents said:

deanna, didn't you say in your first post that after a certain point your daughter was eating gluten with no discomfort?

Well, that's kind of the rub! She definitely stopped the daily crying after she'd been eating it for two weeks, and said "It's fine. I'm fine." when I asked her about it. But the moment she was done having her blood drawn, she reverted to not eating the wheat bread that she'd been eating without complaint. So I'm kind of confused as to what she's actually feeling. When she agreed to eat it for another month, she definitely referenced how much it hurts - but we hadn't heard any complaints about it for the last two weeks prior to her blood draw. So it's hard for me to know what's actually going on inside her little body.