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Four Year Old's Blood Test "slightly Abnormal" For Celiac
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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.

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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!

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

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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 .

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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?

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

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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

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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: 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.

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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

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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 :)

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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.

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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.

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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?

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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?

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:( 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.

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I would probably see how soon you can get into a celiac specialist (look around here). If under two weeks, I'd keep your child on gluten, more than that and, personally, I'd probably take off. Is there a doubt in your mind about the diagnosis? If you are committed to the gluten-free diet that's the important thing.

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Thanks very much Nicole. The Dr did do tests for many vitamins. His folate and b12 were over the normal range. Vitamin d was one point below normal. Everything else was in the very normal range.

I do want to go gluten free ASAP but now managed to get an appointment to see a pediatric gastroenterologist next thursday. So I wonder if we should wait until then. I just had my blood tested today and if I am positive I think I will have the endoscopy.

Re the gluten free diet, I do want to start very soon for my son but wonder what else we might need to eliminate? I have heard about cross reactivity with milk, rice, buckwheat, quinoa etc and know that they do tests for these in the USA at Cyrex labs. I am in Australia though. Anyone know about these tests or know if I can get them done in Austraila? My Mum has issues with dairy as well as gluten so I wonder if these cross reactivities might run in the family as well?

Thank so much everyone for your help, advice and support!

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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?

More sinister stomach issues? Crohns, ulcerative colitis, intestinal lymphoma.

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Lymphoma is likely to develop if a celiac continues eating gluten. Crohn's and ulcerative colitis are from what I have heard extremely painful conditions which would, if any symptoms are present, certainly call for further investigation if the gluten free diet did not make them go away.

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
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