3.5 Year Old Test Results, New Issues, Food Allergies? Ugh.

[omgmegg]

Last January-March our 3 year old was complaining of headaches and his stomach hurting. Plus he was having extremely loose and frequent and stinky stools (so much it was almost impossible to potty train him). We took him to a GI doctor who said he had toddler diarrhea  and to cut out almost all bread, sugar, certain fruits, and dairy. But we never did much dairy or sugar..but we followed the food list. We then took him to a ped. and they wanted to do a celiac test screen on him. They did and said it was normal.

 

So we went about our business and his stools firmed up.

 

About three or so months ago he began complaining about his stomach hurting after eating certain things (usually breads, even though they were rare) but I can't really put my finger on any specific food or meal. He also complains of being dizzy and that his legs hurt.

 

Most recently he complained of "bee bites" (itchy skin) and I saw small bumps all over his butt, lower back, upper back, and two on his face near his mouth (not cold sores). Around thanksgiving he had two peanut butter sandwiches and yogurt that morning and had explosive diarrhea so bad he couldn't get his pants off. It was all over the floor, on the wall in the bathroom, all over the toilet, and base of the sink.

 

I took him to his allergist and asthma doctor (he has asthma). And they told me the bumps are eczema. They ordered food allergy blood tests (waiting for those back). But she didn't even seem concerned! She seemed to think if he had any issues that I would see it immediately (shortness of breath, hives). Even thought he diarrhea happened less than an hour after eating the sandwiches. But the more research I do I discovered that reactions to food allergies can happen hours sometimes up to a day after the food has been digested and they have more subtle affects (bloating, joint pain, eczema, upset stomach, diarrhea).

 

So I called the lab to get them to mail me the results of my sons celiac blood screening from February and in the mean time I called his ped. office to get the numbers. She told me she didn't have time to explain it to me (whatever, we're moving to Seattle in January) and here are the numbers from February '14:

g6PBD- 14

 

IGA- 3

Reference: 4-7 years: 27-195 mg/dL 

 

IGG- 5

Reference: 8 days -4 years: 453-916 mg/dL

 

Transglutaminase IGA less than 20 (no number given)

 

IGG- 2 (not sure what this is...because I have the IGG result above)

 

I have no idea what they really mean. I'm waiting on the food allergy results.

 

I'm just wondering what our next steps are. Someone I know who has a son with severe allergies said a biopsy would be our best bet. We're moving to Seattle in January and so I'm thinking of waiting to get it done there.

[StephanieL]

A food caused allergic reaction happens within 2 hours of ingesting and includes things such as vomiting, hives, breathing difficulty, other GI issues.  A biopsy does not give any indication of a food allergy. If the allergist did testing, was it blood testing or skin testing? If they said those were normal- they are 90% accurate for a negative result.

 

I would want clarification on the IgA and IgG numbers.  See if that's something worth checking into.  If he was not eating gluten on a regular basis AND if there is an IgA deficiency then the Celiac testing would not be accurate anyway.

[cyclinglady]

I got that he was not eating gluten prior to getting the celiac test (or only eating tiny amounts). That would make the celiac test invalid.

Here is a link to the University of Chicago's celiac website. It contains testing information and information on symptoms, etc.

Open Original Shared Link

Search through our DH (rash) section on this forum for photos and valuable information. Sounds like he may have DH. Remember, celiac disease is an autoimmune disorder and not an allergy. Though he may have some food intolerances or allergies on top of celiac disease.

Get copies of all test results and post them. We have some pretty knowledgable folks on this forum.

Do not give up! Keep on researching. And I hope you find a good celiac-savvy doctor in Seattle.

[omgmegg]

I know that celiac is not a foods allergy, spey if my post was confusing. We originally grayed for it, now he's being tested for allergies.

Alergic reactions can happen up to two hours of ingesting, but can also happen next day (one example:Open Original Shared Link )

When I go to the doctor tomorrow I'm going to have them explain the numbers and tests more. When he was tested, we weren't keeping him away from gluten, we just don't consume a ton as a family.

[omgmegg]

Typos! Sorry, on my phone.

[beth01]

Once you get those lab results, post them here. It will help so much more for us to interpret them. Don't let the doctors try and tell you nothing is to be worried about. This is not normal. Keep bothering them and if you don't get the answers you think are correct, see another doctor. My previous doctor didn't want to test my children after I was diagnosed, told me not to worry, he was sure they didn't have it. I insisted. My daughter had been having weird fainting issues at school, a few times a month. He sent her for testing for her heart to specialists, but didn't want to do a simple blood test? She was positive. Got rid of him.

[StephanieL]

A "true" IgE mediated allergic reaction happens within 2 hours of ingestions.  Things like eczema and the like are NOT allergic reactions but more an intolerance. There is a big difference between those two things  (though the treatment is the same- avoidance).  Again, if the allergist tested for those things, a negative result is 90% accurate that it is not an IgE mediated allergy.  

 

 

Again, with the low IgA and IgG levels the Celiac testing isn't going to be accurate either plus if there wasn't enough gluten being consumed as well.

[omgmegg]

I see, but in my post I stated I was waiting for those results. I suppose I'm wondering what patents do who have gotten negative test results but have children still experiencing issues.

The rare occasion that my son has yogurt and peanut butter sandwiches he explodes. Was it the yogurt, peanuts, or the bread? Or something else. So now we're diving deeper.

[StephanieL]

If you suspect those are the three things that it could be, you give them one at a time (potentially for several days in a row) and see what happens. 

When the results are unclear then a food diary is typically they way these things are figured out.  It may take some detective work. 

[nvsmom]

I agree, if those serum IgA and IgG numbers are correct, they are incredibly low and it will be impossible to get an accurate celiac disease blood test.  Those parts of his immune system are under functioning so even if his body is having a celiac reaction to foods, his autoantibody levels will not be elevated because there is not enough Immunoglobulin (IgA or IgG) to be testable.

 

5% of all celiacs are low in IgA (compared to about 1 in 700 in the regular population) so they test that control test along with the celiacs tests.  Low IgG is not linked to celiac disease (as far as I know) but that will invalidate the the celiac disease tests normally used for celiacs who are IgA defiecient.

 

Just in case those numbers are innaccurate, these are the tests you would want

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptids) - new tests which are the best for young kids and early celiac disease
• EMA IgA (endomysial antibodies) - detects more advanced celiac disease and is similar to the tTG IgA
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable test which has largely been replaced by the DGP tests

For these tests to be accurate, he must be eating 1-2 slices of bread per day, or equivalent, in the 8-12 weeks prior to testing.... Even then, toddlers have a highe rate of false negatives so they may not be accurate even if you do eveything right.

 

If his IgG and IgA are low, his only celiac disease testing option is the endoscopic biopsy. He would need to be eating gluten in the 2-4 weeks prior to the procedure.

 

Genetic tseting could also be done (DQ2 and DQ8) but that will only tell you if he is in the 30% of the population that is at increased risk of getting celiac disease (1 in 30ish rather than 1 in 133) and not if he actually has celiac disease.

 

You asked what people do if their kids are negative but they still have (gluten) issues... Really there are only two things you can do:

1. Ignore it and hope it goes away. That sounds bad but in some cases it works...
2. Try the gluten-free diet for about 6 months, and keep a food and symptoms journal to record changes. If improvements are seen in the first 6 months then you know you are doing the right thing. He will need to be gluten-free for many months if you want to judge the diet's effectiveness. Some symptoms take months or even years before they improve. Going gluten-free is not a quick fix like avoiding allergens are for those with allergies.

I followed option number 2 with my boys.  They had symptoms so I made them gluten-free even though their (one and only) celiac disease test was negative. They are doing much better now so we have never regretted trying the diet even though our doctor advised against the "difficult and restrctive diet".  Pshaw!  LOL 

 

Good luck with the doctors.

[omgmegg]

I agree, if those serum IgA and IgG numbers are correct, they are incredibly low and it will be impossible to get an accurate celiac disease blood test.  Those parts of his immune system are under functioning so even if his body is having a celiac reaction to foods, his autoantibody levels will not be elevated because there is not enough Immunoglobulin (IgA or IgG) to be testable.

 

5% of all celiacs are low in IgA (compared to about 1 in 700 in the regular population) so they test that control test along with the celiacs tests.  Low IgG is not linked to celiac disease (as far as I know) but that will invalidate the the celiac disease tests normally used for celiacs who are IgA defiecient.

 

Just in case those numbers are innaccurate, these are the tests you would want

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptids) - new tests which are the best for young kids and early celiac disease
• EMA IgA (endomysial antibodies) - detects more advanced celiac disease and is similar to the tTG IgA
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable test which has largely been replaced by the DGP tests

For these tests to be accurate, he must be eating 1-2 slices of bread per day, or equivalent, in the 8-12 weeks prior to testing.... Even then, toddlers have a highe rate of false negatives so they may not be accurate even if you do eveything right.

 

If his IgG and IgA are low, his only celiac disease testing option is the endoscopic biopsy. He would need to be eating gluten in the 2-4 weeks prior to the procedure.

 

Genetic tseting could also be done (DQ2 and DQ8) but that will only tell you if he is in the 30% of the population that is at increased risk of getting celiac disease (1 in 30ish rather than 1 in 133) and not if he actually has celiac disease.

 

You asked what people do if their kids are negative but they still have (gluten) issues... Really there are only two things you can do:

1. Ignore it and hope it goes away. That sounds bad but in some cases it works...
2. Try the gluten-free diet for about 6 months, and keep a food and symptoms journal to record changes. If improvements are seen in the first 6 months then you know you are doing the right thing. He will need to be gluten-free for many months if you want to judge the diet's effectiveness. Some symptoms take months or even years before they improve. Going gluten-free is not a quick fix like avoiding allergens are for those with allergies.

I followed option number 2 with my boys.  They had symptoms so I made them gluten-free even though their (one and only) celiac disease test was negative. They are doing much better now so we have never regretted trying the diet even though our doctor advised against the "difficult and restrctive diet".  Pshaw!  LOL 

 

Good luck with the doctors.

 

Thank you so much for this information! This is helpful to know so when we move to Seattle and find a new doctor, I can ask for these tests before anything invasive. Thank you.

[nvsmom]

Thank you so much for this information! This is helpful to know so when we move to Seattle and find a new doctor, I can ask for these tests before anything invasive. Thank you.

No problem. 

 

Along with the celiac disease tests I listed, if you are testing again, have the total serum IgA and total serum IgG run again as well. Those are the ones that appeared low in the results you posted. If they are indeed low, your only testing option is the endoscopic biopsy because the blood test results will be (possibly falsely) negative.

 

Best wishes.

[mommida]

I have read articles that have stated up to 30% of Celiacs are IGA deficient.

 

I suggest that you 1 keep a food journal and 2 get to the best pediatric gastroenterologist in Seattle.

 

Invasive tests that are appropriate are Celiac blood panel and stool testing for parasites.

 

Unfortunately for conclusive diagnoses your son will probably have to have an endoscopy with biopsy. 

 

Children present with these symptoms for a number of illnesses and disorders. 

 

*as an example* Eosinophilic disorders of the GI track,  an "allergen"/"trigger" starts the immune system to make eosinophils (white blood cells that usually are reserved for parasite infections)

the eosinophils attack normal healthy body tissue

eosinophils are active for up to 12 days

So you can understand why some of the food related "allergens" (using this term to describe adverse affect on the body not as a true allergic reaction) can be causing adverse auto immune reactions and yet be difficult to pinpoint an exact cause.  (and it seems you might have eliminated a wheat allergy)

 

In some cases gluten has been identified as "triggers" in Eosinophilic cases.

[mommida]

That being said....

We have had parents on here that were searching desperately for answers for sick children.  One child was diagnosed with Kawasaki and went on to have open heart surgery.  We can only really tell you what is consistent for Celiac and/or other diagnoses for our children.  My daughter has been diagnosed for both Celiac and Eosinophilic Esophagitis.