Blood Test Shows High Sensitivity To Gluten.

[GFVeganMom]

Hi there,

I'm new to this forum and also to the gluten-free lifestyle. My 8-year-old daughter had suffered from stomach aches for the last year; we thought it was anxiety or her vitamins or any number of other things, but everything we tried or eliminated had no effect. She was still having near constant stomach aches. So we finally took her in for a blood test.

The naturopath did a food-specific IgG antibody assessment, which showed high levels of antibodies to milk and whey, egg whites and yolks, and wheat gliadin, wheat gluten, rye, spelt and whole wheat. She had low levels of antibodies to barley and oats, but she hadn't eaten much barley in the two weeks leading up to the test.

We're now finishing our first day of being completely free of all the foods identified as moderately to highly reactive for her. She's also a vegetarian, so she's basically eating a gluten-free, vegan diet.

My question is this: Because the blood test has already identified high reactivity to gluten, is there value in putting her through more testing to determine whether she is full-blown celiac? Her other symptoms include fatigue, bloating in her tummy, constipation and some joint pain. Since we know she needs to stay away from the foods mentioned above, would a definitive answer on celiac disease give us any additional benefit?

Thanks for sharing any opinion you might have! I'm at the very beginning of the journey in terms of knowledge.

--Melissa

[ravenwoodglass]

I would highly reccommend that you call your Ped this morning and ask him to order a complete celiac panel for her. Hopefully they will call one in this am or you can go over and pick up a lab slip. With her history of stomach issues they should have no problem ordering the panel. There are instances of false negatives on both blood and biopsy but there are lots of us that do show up and it can help a great deal to have a firm diagnosis.

A diagnosis of celiac means for one thing that the entire family needs to be tested. It is important that she know if it is celiac because of the care that will need to be taken with any meds that she is prescribed, if she should need an operation of any kind they need to make sure everything they use on her is safe, a diagnosis can keep her from getting too much unneeded grief from the dentist if her enamel is effected and the dentist also needs to make sure all he uses on her is gluten-free. If she is celiac the school will need to accomodate her needs by making sure that all foodstuff and class materials like glues and clays etc. are safe. If she is celiac they need to watch for other autoimmune issues, usually these will not show up if she is on the diet. Perhaps most important is that if she has a firm diagnosis of celiac that will help her to remain gluten free when she hits her teens and young adult years. I am not by any means telling you not to have her be gluten free, but do get all the testing done before she starts.

[Fiddle-Faddle]

I do think that the standard celiac panel (which is NOT what you've gotten) would be a very important test to have done--and like ravenwoodglass says, it needs to be done BEFORE going gluten-free, as the tests measure antibodies to gluten--which you don't produce unless you're eating it. (People without gluten sensitivity/celiac disease do NOT produce antibodies to gluten).

These tests include gluten-specific IgA, IgG, TtG, and one more that I can't remember, but it's all on the celiac.com part of this site.

Kudos to your naturopath for thinking of it. While I normally rant against Western medicine, I do agree with ravenwoodglass that you should start with the pediatrician and the celiac panel before going gluten-free.

If necessary, ask the naturopath for a scrip for the celiac panel, or to call the pediatrician to ask for an immediate scrip for the panel BEFORE you can get an appointment, as that usually takes several days. You want to get the bloodwork out of the way so you can get her off gluten.

Be aware that the ped might want to refer her to a gastro doc, who will then want to do an endoscopy and biopsy. On this board, there is a lot of heated debate as to whether that is necessary, worth the risk (it IS somewhat invasive, and sedation carries risks), etc. And those tests also will not be valid if the patient is not consuming gluten (3-4 pieces of bread daily for 3-4 MONTHS prior to the tests--no going off gluten and going back on a week before, that doesn't work).

Also be aware that testing in children has a higher chance of false negatives than for adults, as they haven't been damaging their intestines for as long as adults, so damage is more likely to be patchy and easily missed.

[April in KC]

It's great that you're doing the IGG tests and eliminating suspect foods...dietary response alone might be enough confirmation for YOU...but when she's 18 years old, will it be enough certainty for HER to stay resolutely gluten free? You will find that IGG testing is not foolproof and has its doubters (along with fans). IGG antibodies can be transient...if you kept her on the same diet and tested her again in 6 months, she might show a different set of antibodies.

I'm with the others in thinking that a full Celiac panel would be helpful, if it's positive. It would help give you a piece of paper you can show her when she's older that gives a lot of evidence for the diet she's following. If she tests positive on the antigliadin-IGA, TTG, or the EMA in addition to the antigliadin-IGG, it's very likely she has Celiac Disease and needs to be off gluten for life. If she tests negative to all of these, then I think you go back to where you are today, which is still eliminating gluten and watching for resolution of symptoms, but living without "proof." To me the proof is helpful...I have proof for one of my kids, not for another one whose symptoms resolved nonetheless. I say they both have Celiac, but doctors, school nurses, & future spouses won't necessarily view it the same way.

Full panel:

antigliadin-IGA (get the new "deamidated" version of this test from Mayo labs if you can)

antigliadin-IGG (get the new "deamidated" version of this test from Mayo labs if you can)

tissue transglutaminase (TTG)

endomysial antibodies (EMA)

And also get a "Total serum IGA" or "Quant IGA". This result should be normal even in most Celiacs, but about 20% of Celiacs will have a low total serum IGA...and if it is low, it can make most of their Celiac Panel results unreliable (i.e. if total serum IGA is low, then the Celiac panel might be full of false negatives because they are also based on IGA...and in this case, there are other, specialized tests the docs can run).

It's important to get the blood test done while still on a gluten-containing diet. If you just stopped yesterday, just try to get the test ASAP (this week) rather than putting her back on gluten.

It's still your choice...if you think you and she can live her whole life without gluten, without the proof, then go for it. On the other hand, if you can see yourself one month from now, when she's feeling better, wavering at a birthday party or family meal, then do try to get the proof. Does that make sense?

As for the endoscopy, I could take it or leave it. It does have value in helping confirm Celiac and rule out other GI conditions (like eosinophilic disorders); however, my oldest son's GI says that a positive EMA blood test is all the proof he needs - there is nothing on earth known to cause that result except for Celiac Disease, and even the biopsy can miss it if they don't happen to check the spot where the damage has occurred. We did the biopsy (because he was very sick and we needed to know if there were other things going on). The procedure was not traumatic for him in the slightest. It was done at a Children's Hospital, and they were great about allowing him to bring in a stuffed animal...also he got the "sleepy air" before they inserted the IV, which was GREAT. In his case, it was helpful, because he did have two conditions - Celiac Disease and Eosinophilic Gastroenteritis...very helpful to know the latter, since there are different foods that trigger this.

Sorry for the length...hope I didn't make this more confusing.

Very exciting to know that your daughter may soon be feeling better. Get her vitamin A, D, E & K levels checked if she is thin or has been sick for a long time. Also her B-vitamins. My son was low on A and E.

[April in KC]

I wanted to add that gluten-free and vegan is do-able, but a nutritionist will help make sure you're replacing the nutrients that would come from the grains. Quinoa is a good gluten-free grain.

Nutrition consult is especially important if you are going to do other food eliminations on the basis of an IGG test. Good luck!

[Piccolo]

Melissa,

Welcome to the board. There is a wealth of information here. I went gluten free when I had the same test your daughter had. I had been having GI problems for 20+ years. I was told I have IBS live with it. I now have been gluten free for over 2 years and my GI problems started clearing up immediately. I have had a few reactions and no way am I going back to gluten.

I tested positive to 21 different foods some of which I have added back and rotate in my diet.

Susan

[sugarsue]

Full panel:

antigliadin-IGA (get the new "deamidated" version of this test from Mayo labs if you can)

antigliadin-IGG (get the new "deamidated" version of this test from Mayo labs if you can)

tissue transglutaminase (TTG)

endomysial antibodies (EMA)

And also get a "Total serum IGA" or "Quant IGA". This result should be normal even in most Celiacs, but about 20% of Celiacs will have a low total serum IGA...and if it is low, it can make most of their Celiac Panel results unreliable (i.e. if total serum IGA is low, then the Celiac panel might be full of false negatives because they are also based on IGA...and in this case, there are other, specialized tests the docs can run).

Hi! What are the other tests that can be run if you have low IGA? My dd's IGA result was 64 with the range of 33-235 mg/dl and I'm feeling like that may indicate that she does not produce enough IgA.

Thanks!

[sugarsue]

My question is this: Because the blood test has already identified high reactivity to gluten, is there value in putting her through more testing to determine whether she is full-blown celiac? Her other symptoms include fatigue, bloating in her tummy, constipation and some joint pain. Since we know she needs to stay away from the foods mentioned above, would a definitive answer on celiac disease give us any additional benefit?

Hi, my daughter is 6 and gluten intolerant. Our doctors do not believe from the results of her celiac panel that she has celiac, but the results came back as inconclusive. She's been gluten free for 3 months and improving in many areas. I'm finding that she is very sensitive to gluten and I always wonder about the celiac side of it. I wonder if I knew she was celiac if I would be more careful, more forceful, more sure. But if it meant putting her back on gluten and having a biopsy, I'm not sure I'd do it at this point in her life.

Anyway, I don't know if that helps. I guess I'm saying, I would really like to know. You just have to weigh the pros and cons. If you can get a celiac panel as the others have said, that would be a really good place to start next.

Good luck!

[Fiddle-Faddle]

Our doctors do not believe from the results of her celiac panel that she has celiac, but the results came back as inconclusive. She's been gluten free for 3 months and improving in many areas. I'm finding that she is very sensitive to gluten and I always wonder about the celiac side of it. I wonder if I knew she was celiac if I would be more careful, more forceful, more sure.

If the results are "inconclusive", then my guess would be that the results are positive, but that your doctors don't know how to read the tests correctly. It's like pregnancy--there is no such thing as an inconclusive test, either you are or you aren't.

If she is producing antibodies to gluten, she is quite likely to have celiac, especially if she is improving on the gluten-free diet, and is very sensitive to gluten.

All the biopsy does is confirm villi damage, and/or show other intestinal conditions. But you should be aware that people with the dermatitis herpetiformis rash DO have celiac--but often do NOT have villi damage. (I'm not saying htat your daughter has dermatitis herpetiformis, only that it is possible to have celiac disease without the villi destruction which is usually used as the gold standard of celiac diagnosis! Also, there are people with celiac who have totally normal blood tests.)

Given your daughter's sensitivity to gluten, I'd say that you have to be just as vigilant as anyone with an official celiac diagnosis, especially if there is a family history of autoimmune disorders.

[April in KC]

Hi! What are the other tests that can be run if you have low IGA? My dd's IGA result was 64 with the range of 33-235 mg/dl and I'm feeling like that may indicate that she does not produce enough IgA.

Thanks!

Basically, it's the IGG versions of the same tests for endomysial antibodies, tissue transglutaminase, etc. (the usual versions of these tests are based on immunoglobulin A...however, you and your doc may have to figure out what lab offers these tests.

Here is an abstract + article that describes the alternate testing for people with IGA deficiency:

Open Original Shared Link

Hope that helps.

[GFVeganMom]

Thanks for all the replies and insight. You all raised some very good points my husband and I hadn't yet considered. Unfortunately, before I came back and read this, we had already taken her off gluten. It's been about 6 days; will that mess up the celiac test if I can get her in to the pediatrician in the next couple of days? Or do we need to go back to gluten at the level mentioned above? I'm really kicking myself for not figuring it out first. The learning curve is so steep just in terms of food for her - mostly because of the dairy and egg issues (the gluten would be easier to deal with if it weren't for the other sensitivities and her vegetarianism). I'm fairly certain she had some exposure to gluten a couple of days ago in some cereal that was wheat-free but had oat flour and must have been contaminated with gluten.

Again, thank you all for your help. I've never been quite so clueless about anything in her life as I am about all this.

[Fiddle-Faddle]

I think we all started this diet in total cluelessness!

Some celiacs react even to certified gluten-free oats grown on a dedicated field and processed in a dedicated facility. Apparently the protein in oats is molecularly similar to to gluten.

The test MIGHT be messed up at this point, or it might not. It could go either way, no way to tell which. Sorry.