Testing For My 6 Year Old.

[Summerly123]

Hi

I'm new here. We've been going through a process of testing for my 6 year old daughter. Her first blood results 6 months ago we're deemed 'borderline'. She was tested again this month and the blood results for celiac came back positive, another antibody test came back at 10.2 and she also had a genetic factor present.

When we were given the results I was alone, shocked and didn't really take it in. I now have questions and no one to answer them.

She's been referred for a gut biopsy in 4-6 weeks to give us a diagnosis. I'm struggling to see how this can come back negative for celiac after her blood results, but I'm told it could.

Does anyone know what her results actually mean in terms of how high the antibody level is please?

Any advice would be greatly appreciated.

Thanks

[greenbeanie]

Welcome to the forum! Though it is confusing to take everything in at first, if your daughter does indeed have celiac it's great to find that out sooner rather than later. It sounds like you may have caught it early on. Do you know what specific tests were run and what the reference ranges are? If you have a copy of the results and post them here, people may have more specific suggestions about what the results mean. From what you've said, it sounds to me like she does have celiac. It's wonderful that your daughter's doctor ran the test a second time to track changes.

You know that she needs to continue eating gluten until after the biopsy is completed, right? Even well-meaning primary care doctors sometimes give bad advice about that, telling people to immediately remove gluten after a positive blood test. But doing so would increase the chances of a false negative biopsy. The biopsies can miss the damage if it's patchy, especially if they only take a few samples. If you have any questions about what you should be feeding her between now and the biopsy, you can call the GI's office and ask them directly. Even though you probably won't be able to speak to the doctor, a nurse may be able to relay questions for you. It's also worth asking if they can fit her in sooner, given the positive bloodwork. (My daughter's GI office originally said their soonest appointment was more than two months away, but they ended up being able to fit us in less than a week later.)

Hang in there! The "Search forum via Google" box above is very useful for finding previous posts about specific issues as they arise, and people here gave invaluable advice when we were going through this process with my daughter last year. You've come to the right place. Good luck!

[nvsmom]

Welcome. 

 

I agree with Greenbeanie, it's  good idea to call the GI's office. They'll often hurry things along for a child who is suffering.

 

If you still have to wait the 4-6 weeks, you could probably have her go "gluten-light" for a couple of weeks (ie, 1 cookie per day or half a muffin) and then resume the full gluten challenge (1-2 slices of bread or equivalent for 2-4 weeks prior to biopsy).

 

The latest stats I saw about the sensitivity of the biopsy (how many celiacs it actually catches) was at about 80%, that means that it could miss as many as 1 in 5 celiacs.  Intestinal damage can be patchy, especially in the early stages of the disease, so it's a good idea to get as many biopsy samples taken as possible.  A minimum of 6 is a good starting point.

 

I can't comment on her blood test result because I don't know which test was run or it's normal reference range.  The most common test is the tTG IgA and it's range can be 0-1, 0-4, 0-6, 0-10, or even 0-20 (like my lab's).

 

When you do see the GI, request that more tests be run. Might as well since you are there and she is on gluten. Plus more tests are better in the case that she gets a false negative (on the biopsy), like she did on her first test.

 

This is the full panel:

tTG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - new tests which are superior for detecting celiac disease in children and early celiac disease (usually)

EMA IgA - detects more advanced celiac disease, and is very specific to celiac disease

total serum IgA - a control test

AGA IgA and AGA IgG - older and less sensitive and specific tests

 

When all testing is done though, remember that she had a positive blood test and that means that she hs celiac disease.  Some doctors won't diagnose a patient until all tests are positive and all the stars align, which only means that the patient has to suffer for months or years of more sickness until she finally has enough damage (proof) for the doctor to finally put his stamp of approval on a diagnosis.... Sounds like this has already happened to here - she had to keep eating gluten until she was finally sick enough for her illness to be caught on the one test. 

 

Think of a celiac disease tets like a pregnancy test - a positive is a positive.  Sometimes those double lines are faint and other times there are very dark and definitive, but they both mean exactly the same thing.

 

Also, celiac disease is a genetic disease, so the rest of the family should be tested, and retested every two years if negative, even if they are asymptomatic (some celiacs have no GI symptoms at all).

 

Best wishes.

[Cara in Boston]

A positive biopsy will confirm the diagnosis of Celiac Disease.  It will also give the doctors a "starting point" to monitor  the damage and the healing once she starts the diet.  Be aware that a negative biopsy does not mean she does not have celiac.  It just means no damage was found.  It could have been missed (human error) or perhaps there is not yet enough measurable damage.  This does NOT mean she should continue eating gluten.  Some (uninformed) doctors will advise people to continue eating a regular diet until the damage can be measured . . . even though the blood tests indicate that they do indeed have celiac.  Why wait for damage?  It seems crazy to me.

 

Continue eating a REGULAR diet until the biopsy is complete and then go gluten free right after.  You don't need to wait for the biopsy results to start the diet.  Take the next few weeks to start introducing more gluten free foods to your daughter so that when the time comes to be 100% gluten free, you will already know which "substitute" foods work best for you.  As time passes, gradually move from these foods to a more naturally gluten free diet (better for you and better for your budget).   

 

When we first went gluten free, I just swapped out our regular food (bagels, waffles, pizza crusts, etc.) for gluten free versions . . . my son (6 at the time) did great but I put on 20 pounds.  Now we just use those products occasionally and eat more rice and vegetables with our meals.

 

Go to the library and read and learn as much as you can.  Then, when you get the biopsy results, you can make an informed decision - many (MANY) doctors just do not know about Celiac and give terrible advice or just misdiagnose people - it takes years for them to finally figure out the cause of their problem.  Once testing is done, try the diet and consider it the final test.  I assume that there were symptoms that brought you to the doctor in the first place.  If those clear up on the diet, you will be certain (regardless of the biopsy results).  Positive blood tests and positive response to the diet are enough for a diagnosis.  If the biopsy is positive, you will know without a doubt it is celiac.

 

With her positive blood tests, the rest of the family should get tested regardless of symptoms.  No need to wait for her biopsy results.  Get the ball rolling now in case you have to wait weeks for other tests.  When my son was diagnosed, I found out I had it too. It was MUCH easier to change our diet together . . . Now our house is gluten free and my husband and other son only eat gluten when they are out of the house.

 

Read, read, read.  The more you know, the better decisions you will make.

 

If your doctor does not seem to know about it, (our first one didn't) find one that does.  See if there is a Celiac Support group in your area and make contact.  They can usually give you advice about knowledgable doctors.  Our Children's Hospital has a Celiac Unit so I knew we were in good hands.  Our first doctor decided my son didn't have it (didn't even request a biopsy) based on the fact that he was tall for his age and was on target for weight.  He had positive blood tests - and by then, so did I. He told me I "had read too many magazines" when I pressed him to continue testing for Celiac.  He said that maybe the initial tests were a "lab error" because my seemingly healthy son couldn't possibly have celiac.  Our main symptom was horrible behavior - no GI symptoms at all.  I got the impression that the doctor thought I was looking for an excuse for his tantrums and lack of self control.  

 

After the diagnosis (positive biopsy) and within days of being gluten free, we had our pleasant, friendly child back.

[StephanieL]

Some of the world leading Celiac Dr's will say in this kind of case to keep on a regular diet.  It isn't "uninformed" ones. 

 

 

 Some (uninformed) doctors will advise people to continue eating a regular diet until the damage can be measured . . . even though the blood tests indicate that they do indeed have celiac.  Why wait for damage?  It seems crazy to me.

[Summerly123]

Thanks for all your responses. It's been really helpful.

Sadly I don't know what the actual tests were. I feel foolish for not asking but will call the hospital tomorrow and ask them to send me the results by post. All I know is the antibody test came back at 10.2 and 'normal' was considered 4.

I'm struggling with understanding the point of the biopsy if the view is she is celiac as a result of blood tests. And if it is negative I worry they'll say she doesn't have it. In fact all this is so new, I'm just worried, it feels very overwhelming.

I just want to know what the biopsy will show and then go gluten free. I'm struggling with potentially damaging her until the appointment is through but it seems there is no choice,

Thanks again.

[nvsmom]

Thanks for all your responses. It's been really helpful.

Sadly I don't know what the actual tests were. I feel foolish for not asking but will call the hospital tomorrow and ask them to send me the results by post. All I know is the antibody test came back at 10.2 and 'normal' was considered 4.

I'm struggling with understanding the point of the biopsy if the view is she is celiac as a result of blood tests. And if it is negative I worry they'll say she doesn't have it. In fact all this is so new, I'm just worried, it feels very overwhelming.

I just want to know what the biopsy will show and then go gluten free. I'm struggling with potentially damaging her until the appointment is through but it seems there is no choice,

Thanks again.

 

Do not feel bad about not asking for the test names. I was brought up to trust doctors and it took me almost four decades to realize that I should not trust them so completely with my life... This was after they had brushed off abnormal test results for years without telling me. 

 

 That's quite a strong positive result - two and a half times the upper normal limit. That is not a weak positive at all, so she probably is not one of the 5% of weak  (tTG IgA) results that could be caused by another illness.  Those weak positive results which are caused by other health problems (crohn's, colititis, diabetes, liver disease, thyroiditis, serious infection) would have results like a 4.5 to maybe as high as a 6.

 

You are right to worry that the biopsy could yield conficting results. I would guess that a larger than expected portion of our board members joined because they needed help interpreting conflicting test results. Negative biopsies with positive blood tests (and vice versa) does happen quite frequntly. Some doctors seem to think that the negative test cancels out the positive test but for most people, it doesn't really work that way.

 

Chances are that the damage will be seen. The biopsy catches about 80% of celiacs so her chances are good.

 

You could always ask the doctor to diagnose her now, prior to the biopsy. Ask the doctor what her diagnosis will be if the biopsy is negative.  Perhaps she'll still get the"official" diagnosis.

 

If she has no diagnosis in the end, go with your gut.  You know gluten is the problem and she had a positive test - tell the world she is a celiac and protect her from future health issues from the gluten-free diet.

 

If you think something else could be the problem, try the gluten-free diet for 6 months while you search for more answers -you might as well cover your bases while you are still looking.