18 replies to this topic

[javic]

My son recently had a blood test for celiac and today I called the Dr's surgery to see if results were in. The receptionist informed me that the test for celiac was "slightly abnormal" and made a non-urgent appointment for us with the doctor next Monday.

I am now really wanting to know what this means - I don't want to wait until monday to work out what is going on.

Anyone have any idea what a slightly abnormal blood test for celiac means? Or any ieda where I can look online for more information?

The reason we tested for celiac was because my son has a very bloated belly, poor appetite (very fussy eater) and complained of stomach pains every few weeks. He is also quite irritiable and his energy levels have decreased a lot in the past couple of years. He is also short for his age, but then we are not tall people. Also, the blood test showed normal levels of iron, zinc, vit d and other nutrients.

[GottaSki]

Just my guess - slightly abnormal will likely mean one or more of the antibody tests was positive. With Celiac Disease the general rule is "positive is positive".

I would not wait for Monday to obtain the results of the tests. Call and request written or electronic copies of the tests ordered. If you post them here - many of us can help interpret.

Hang in there!

[shadowicewolf]

call and ask for the actual record of the tests so you can see them yourself, then post on here so we can help.

[Skysmom03]

I would just go to the appt and see what the doctor says. Abnormal simply means it is out of the range that someone who is not sensitive to gluten would have. The doctor will probably do more specific blood tests to see what is going on. Don't change anything that you do, and try not to worry too much. I know it is hard because it is your child. If it is Celiac, it is scary and it is a big change in your family's lifestyle, but it is manageable .

[javic]

Just called the doctor's office again to try to get the results but don't think the receptionist was able to give them out. She changed our appointment until tomorrow instead so hopefully will know soon.

One more question though - my son can be quite obsessed with eating bready type products. Is this common with celiac? I figured it was quite normal for humans in general, but wondered if wheat has a more addictive quality for celiacs?

[mushroom]

Yes, bread (and gluten in general) can be quite addictive, and some people go through a period of withdrawal from it.

[Skysmom03]

I don't know if liking bread products a lot makes you more susceptible to celiac. Your child just probably really likes bread. My nine year old did. We have found that he loves UDIS hot dog buns. So that gives him a bread option. He will eat the UDIS regular bread for cinnamon toast and stuff like that but he definitely likes the hot dog buns the best. We have the hamburger buns too, but he has gotten to where he likes his whoppers without the bread now!! My husband can also now do without the bread too .

Skylar - son - two months since diagnosis
Glenn- husband- 22 months since diagnosis

[nvsmom]

I like to compare celiac testing to pregnancy tests; a pregnancy test can be just slightly positive but you can't be just a little bit pregnant. Like a pregnanct test, there are a few unusual circumstances that could give a false positive but it's not likely in a healthy individual without any other gastrointestinal conditions. Young children can often have false negative tests; the theory it that it's because there hasn't been as much intestinal damage done yet.

Unfortunately, your son's symptoms are quite classic for a celiac. I remembersome of those symptoms from my early childhood too; and like your son, I tested normal for all nutrients so that doesn't discount the possibility of celiac. It's good that you had him tested.

As Neroli (mushroom) said, people can go through a withdrawl from wheat. I sure did. When I was eating gluten, I needed to eat every couple of hours or I felt poorly; and I seemed to be hungrier with the more flour products that I ate so I would eat more... It took a few weeks to feel well again, and boy was I grumpy for a while.

There are some good gluten-free breads out there. Udi's is the best by far in my family's opinion. My boys also like this quick bun recipe from the forum: http://www.celiac.co...ead-in-minutes/ We use coconut flour instead of almond due to allergies.

Best of luck with the appointment today. I hope the doctor is helpful and the results are relatively clear cut.

[Cara in Boston]

I found the testing process to be very frustrating. It also took longer than I anticipated and it was hard to continue to feed my son gluten during the months it took to finally get him diagnosed. Please keep reading and learning about it and be aware that many, many doctors just aren't up to speed. Our first doctor wasn't and if I hadn't already read about the confusing testing process, I might have just left his office thinking my son did not have celiac. Luckily, I knew to take him to another doctor.

Your doctor could try the "it is just slightly elevated so lets wait another 6 months and test him again to see if it goes up . . ." Don't go for it. If the test is out of range, it is out of range. The range is there for a reason. Why wait for more damage to occur?

Hopefully, you will be one of the lucky ones who gets a doctor who knows the drill.

There is lots of good information here. Keep coming back with questions.

Good luck -

Cara

[GottaSki]

Your doctor could try the "it is just slightly elevated so lets wait another 6 months and test him again to see if it goes up . . ." Don't go for it. If the test is out of range, it is out of range. The range is there for a reason. Why wait for more damage to occur?

Hopefully, you will be one of the lucky ones who gets a doctor who knows the drill.

There is lots of good information here. Keep coming back with questions.

Exactly - let us know if you have questions

[megsybeth]

I agree to not let them delay. As for liking bread products, in our family I think it was definitely related to celiac to do with malabsorption. I never really liked wheat but I would binge on sugary foods, which often have wheat. And I was one of those people who could stay skinny while doing it. My son with celiac is the same way. He would actually dive onto the floor to shove goldfish crackers in his mouth or cookies. I think it's more about simple carbohydrates/sugars and being chronically hungry.

My hunger leveled out very soon after going gluten free and I just don't think as much about sweets. My son is only two weeks in and doesn't seem to want to eat anything =(. But hopefully he'll get an appetite soon.

[guest134]

Your doctor could try the "it is just slightly elevated so lets wait another 6 months and test him again to see if it goes up . . ." Don't go for it. If the test is out of range, it is out of range. The range is there for a reason. Why wait for more damage to occur?

Well, one of the many reasons this approach is taken:
http://www.ncbi.nlm.nih.gov/pubmed/443040
http://www.celiac.com/articles/22057/1/Improving-Serological-Mass-Screening-in-Childhood-Celiac-Disease/Page1.html

It can be considered a transient phenomenon in children so it is important to make sure it is for sure celiacs before putting someone on a life long gluten free diet and ignore another possibly more sinister issue that is actually going on.

[mushroom]

Well, one of the many reasons this approach is taken:
http://www.ncbi.nlm....v/pubmed/443040
http://www.celiac.co...ease/Page1.html

It can be considered a transient phenomenon in children so it is important to make sure it is for sure celiacs before putting someone on a life long gluten free diet and ignore another possibly more sinister issue that is actually going on.

It has long been promoted that children "grow out of" celiac disease. I believe it is because of these fluctuations you are talking about. Many children whose levels subsequently drop have been told they do not have celiac disease, only for it to re-emerge with a vengeance in later years. What is/are the more sinister issues you are referring to; i.e., more serious than having a celiac continue eating gluten? And subsequently developing other auto-immune diseases in later life?

[javic]

Okay so the test results showed really high AGA IgG. It was >100 and positive range was >30.
The T-glutaminase was 9 and positive is >8.

I was given a referral to a gastroenterologist but when I called they said she is not taking new patients.

Options, I think, are gene test or endoscopy/biopsy. But not sure why we need to bother with that. If this test is positive, shouldn't we just go off gluten and see what happens?

[nvsmom]

Those are pretty positive tests, so according to the blood tests he most likely is a celiac. Some people and doctors like to get an endoscopy to confirm the damage is consistent with celiac (and there is no sign of any other problem) and to get a baseline to start from.

Some doctors won't give an official diagnosis without an endoscopy. That diagnosis can be helpful to get accommodations at school or college but if that's not an issue (you pack your own lunches and don't plan on using college dorms) then you could skip it. I skipped it but I'm an adult and don't need special treatment.

I personally don't see the need for genetic testing. That seems most useful for kids who have ambiguous tests and the parents worry that the child might develop celiac one day, unfortunately your son appears to be passed that point now.

I'm not a fan of the biopsy so I would just go gluten-free, but that is a very personal choice. I'm sure others around here will give good advice and opinions too. I would have his vitamin levels checked though. Many celiacs are deficient in calcium, ferriten, potassium, B12 (and other B's) and D. Thyroid issues are common in celiacs too so that could be checked as well.

Good luck. I hope he feels better soon.