Could A Blood Test For Celiacs Be Wrong?

[macie376]

Hi. I'm a 27 year old female. I have all of the symptoms of Celiacs, including the not so common issues (Thyroid problems, etc). I also have a history of cancerous polyps in my intestines, so I go regularly for colonoscopies. At my last colonoscopy my doctor said it seemed as if Celiac's Disease was likely (based upon what she saw during my scope). When I visited my regular doctor, he ordered the blood tests, which came back negative. My aunt (who has Celiac's) said the ONLY way to tell for sure is with a scope, and that the blood test can be wrong. Is that true? My doctor was ordering an upper GI, but I have not had time to do it (I'm a single mom with 3 kids, it's nearly impossible to schedule my own appointments). Should I rule out Celiac's and look for other possible culprits? Thanks for any help!

EDIT: My symptoms are gastro- the normal constipation/diahrrea, extreme nausea at times, my stomach bloats unbelievably large- I have taken pictures and it looks as if I'm 6-8 months pregnant, I bounce around from anemic to not anemic, my thyroid levels are off, but not alarmingly so, anxiety, until I gained alot of weight with my last son I was always well underweight (5'8", 110-120 lbs), now I am about average (5'8", 132 lbs), and I've had blood in my stool. Which brings me to my next concern...

Every time I drink beer, I get blood in my stool within a couple of hours. It's bright red. I do not have hemorrhoids because these would have shown up in my scopes. Thanks for taking the time to read this. It's really a very confusing, frustrating process!

[txplowgirl]

Oh definetly yes on the negative blood tests, even on the scope to because they can biopsy the wrong area. You can still have celiac and get negative tests. If and when you get all your testing done that you want go gluten free strictly for about 3 to 6 months. Especially since you have a realtive with it. Wouldn't hurt you to have your kiddos tested too and even take them gluten free with you. They can also be having problems with gluten and you not realize it. Do any of them have asthma, allergies, adhd, etc.? Just something to think about.

Oh, and welcome to the forum,

[macie376]

Oh definetly yes on the negative blood tests, even on the scope to because they can biopsy the wrong area. You can still have celiac and get negative tests. If and when you get all your testing done that you want go gluten free strictly for about 3 to 6 months. Especially since you have a realtive with it. Wouldn't hurt you to have your kiddos tested too and even take them gluten free with you. They can also be having problems with gluten and you not realize it. Do any of them have asthma, allergies, adhd, etc.? Just something to think about.

Oh, and welcome to the forum,

Thanks so much. It's goog to know that I'm not crazy lol. My kids (twin 5 year old boys and a 22 month old boy) are actually in very good health. My twins are very picky eaters and it would be nearly impossible to put them on a gluten free diet, as their list of acceptable foods consists mainly of fries, chicken nuggets, fish sticks, grilled cheese, and pasta with NO SAUCE lol. But I will definitely consider it if I notice any symptoms in them. Well, actually, one of my twins has been on Miralax for 2 years because of major constipation. They are identical twins, is it possible for one to have a gluten intolerance and not the other? Hmm, I will discuss it with their pediatrician. Thanks again!

[psawyer]

False negative test results are fairly common.

Genetics is part of the equation, but an external trigger is also needed for celiac disease. It is not uncommon for only one of a set of identical twins to develop celiac disease.

[txplowgirl]

Thanks so much. It's goog to know that I'm not crazy lol. My kids (twin 5 year old boys and a 22 month old boy) are actually in very good health. My twins are very picky eaters and it would be nearly impossible to put them on a gluten free diet, as their list of acceptable foods consists mainly of fries, chicken nuggets, fish sticks, grilled cheese, and pasta with NO SAUCE lol. But I will definitely consider it if I notice any symptoms in them. Well, actually, one of my twins has been on Miralax for 2 years because of major constipation. They are identical twins, is it possible for one to have a gluten intolerance and not the other? Hmm, I will discuss it with their pediatrician. Thanks again!

Could very well be a possibility for the one twin. Answer this question? Is it normal for a 5 year old to have to take Miralax for so long? Major constipation can be a sign of a gluten problem. I thought it was normal for me to go up to 6 weeks without a bowel movement. Since the age of 7, It wan't until I went gluten free at the age of 44 to know what regular meant.

And yes, 1 could have it the other not and the blood tests for children also have a high negative rate. Very frustrating.

[macie376]

False negative test results are fairly common.

Genetics is part of the equation, but an external trigger is also needed for celiac disease. It is not uncommon for only one of a set of identical twins to develop celiac disease.

Thank you for the info! What a wonderful site!

[macie376]

Could very well be a possibility for the one twin. Answer this question? Is it normal for a 5 year old to have to take Miralax for so long? Major constipation can be a sign of a gluten problem. I thought it was normal for me to go up to 6 weeks without a bowel movement. Since the age of 7, It wan't until I went gluten free at the age of 44 to know what regular meant.

And yes, 1 could have it the other not and the blood tests for children also have a high negative rate. Very frustrating.

Definitely not normal but not unheard of. They have an amazing pediatrician and I trust him 100%. I will mention Celiac's Disease to him and see where he wants to go from here. Basically, Aidan's intestines aren't pushing the stuff out like they should be. He gets "backed up," which causes extreme pain and discomfort, so he's been on the Miralax to keep him going because eventually the intestines would just quit working altogether. We were hoping the Miralax would get him back to "regular" and the intestines would continue working properly on their own, but I will definitely discuss gluten with the doctor. Thanks again for the good advice.

[ravenwoodglass]

Definitely not normal but not unheard of. They have an amazing pediatrician and I trust him 100%. I will mention Celiac's Disease to him and see where he wants to go from here. Basically, Aidan's intestines aren't pushing the stuff out like they should be. He gets "backed up," which causes extreme pain and discomfort, so he's been on the Miralax to keep him going because eventually the intestines would just quit working altogether. We were hoping the Miralax would get him back to "regular" and the intestines would continue working properly on their own, but I will definitely discuss gluten with the doctor. Thanks again for the good advice.

I hope your children's doctor is very knowledgeable about celiac. You should have them screened even if they don't seem symptomatic. Keeping in mind that false negatives with children are even more common than for adults.

Something is causing the constipation. With a family history of celiac it is quite possible that celiac is causing it. It is not unusual for some of us to be constipated for a long time before the D sets in. Your doctor should be trying to figure out why this issue is present rather than just medicating it. How are they going with their growth? Have they fallen lower on the growth charts since where they were at birth? That can be another indication. Mood issues like tantrums and depression can also be signs that gluten is an issue.

[cassP]

Definitely not normal but not unheard of. They have an amazing pediatrician and I trust him 100%. I will mention Celiac's Disease to him and see where he wants to go from here. Basically, Aidan's intestines aren't pushing the stuff out like they should be. He gets "backed up," which causes extreme pain and discomfort, so he's been on the Miralax to keep him going because eventually the intestines would just quit working altogether. We were hoping the Miralax would get him back to "regular" and the intestines would continue working properly on their own, but I will definitely discuss gluten with the doctor. Thanks again for the good advice.

gluten always gave me HORRIFIC constipation. i think its definitely a possibility for your kid to have it, especially reading about your symptoms. also keep in mind the other twin could have it and be asymptomatic (as most Celiacs ARE asymptomatic). like everyone said above- false negatives are common with blood tests AND biopsies... you also need to get a complete Celiac panel- because one of your antibodies tests could be negative while another one not ordered could be positive. always get a copy of your test results for yourself so you can study them, often doctors only give it a passing glance and may not notice something... or your numbers could be high but still within a range, and then maybe noone at the lab or doc's office is alerted. it's such a tricky disease to dx, so it's best for you to study your results. you may not be an officially diagnosed Celiac- but if Gluten is making u sick- then you would definitely be Gluten Intolerant- which can make u just as sick...

i really think you should get your kids on fruits & veggies... but even if you couldnt, there are gluten-free alternatives to the diet they're on... there's gluten-free fish sticks & chicken fingers in the frozen section of some stores: Open Original Shared Link

**read carefully on their labels- because Ians makes both gluten-free & regular gluten filled products.

also Tinkyada brand Brown Rice pasta is DELISH! you could even get their elbow pasta, mix it with a Ragu proccessed cheese sauce- its not healthy- but it would Gluten Free mac & cheese, and yummy.

good luck