4 Year Old With Negative Blood Tests

[brigitam]

I am hoping someone may be able to offer me some help.

My 4 1/2 year old son is extremely small and skinny for his age. He does not have the disproportionate large stomach that a lot of celiac children have. I have never thought he has had allergies despite constant stomach upsets of some kind or another and what the doctors called a failure to thrive. Recently he had blood tests for celiac disease and everything seemed to add up. After he had the tests but before we got the results we put him on a gluten free diet for 2 weeks. After 1 week his appetite seemed to improve, he seemed to put on weight and he stopped bedwetting through the night. When our paediatrician said the tests came back negative I was pretty disappointed because it seemed to answer so many questions. Now we have put him back on gluten he has almost completely stopped eating, his diarrhoea has returned and his is wetting through the night. Is it possible that the blood tests are wrong? or may he just have an allergy? It is clear to me that I am close to solving his problems but I don't know what I can do now. Our paediatrician has said to me that if the tests came back negative then he isn't celiac, but are these tests 100%? Would love some feedback, thanks.

[psawyer]

False negatives are not uncommon, and testing in young children is notoriously unreliable.

[brigitam]

Thanks for the reply. Is there another way he can be tested? And if so should I keep him on gluten until further testing or take him off gluten regardless of results or try wheat free? I'm really unsure because I don't want to have him be gluten free if it is not needed. I just read that reflux babies are often celiac too. Is this true because my son suffered from pretty bad reflux when I was breastfeeding.

[mushroom]

As Peter said, it is very hard to get an accurate test result in young children. Even with adults there is an approximate 20% rate of false negatives on both blood and biopsy testing. If he responds well to the gluten free diet I would say, save yourselves both a lot of grief and keep him off gluten. He can always go back and challenge it again at a later time. But give the diet a good three-month trial because the most important thing is for him to thrive and be well regardless of what the tests say. Failure to thrive is, of course, the classic celiac symptom in a youngster.

Many people who test negative for celiac do better on the gluten free diet; many people on this board (myself included) have never had any testing for celiac disease because the diagnosis never occurred to our doctors, but we would not dream of consuming gluten again, having had our problems resolve without it.

The good part about eating gluten free is that you can do it on your own, without a doctor's permission or orders (although you should tell your child's pediatrician that he is gluten free, of course) and see if it is the solution for your family.

I certainly hope it is, for both your sakes. Good luck.

[GFinDC]

Right, and the best and most important test is actual body response anyway. If he does better without gluten then there is no reason to feed it to him. Regardless of what any doctor or test says.

[brigitam]

Thanks for giving the time to respond and give me such great advice. I cried when the doctor said he wasn't celiac because it all seemed to fit so well and my son seemed so much better for it. I will try him on the diet again for at least 3 months and see how he goes... regardless of his diagnosis. I think I already know that he will be better for it and may even grow a bit which would be great seeing his younger sister has already outgrown him. Incase anyone else is in a similar situation and reading this, I will continue this thread to let you know how he is going. Thanks again.

[psawyer]

Is there another way he can be tested?

Response to the diet is a sufficient test for many, many people here. You don't need permission from a doctor to eat gluten-free.

[mom2kae]

Response to the diet is a sufficient test for many, many people here. You don't need permission from a doctor to eat gluten-free.

My now 4 yr. old was tested at about 18 mos. & then again at 3 1/2 for Celiac & both tests each time came back neg. for Celiac but all of the numbers rose & her IgG Gliadin came back positive at her 3 1/2 yr. test for a Gluten Intolerance. Her ped still said not to really care about taking her off Gluten because "90% of America is intolerant to Gluten..." (her words).

She was finally diagnosed as FTL at about 2 1/2 after dropping weight, gaining an ounce or 2, losing, getting sick, diarrhea, losing enamel on her teeth (& now chipping), unexplained anemia, protruding belly, constantly getting sick, low immunity, plus MANY other things. Ped did CF tests on her, kidney tests, countless blood tests, stool tests, urine tests, xrays for bone growth (she's about a year-2 yrs. behind), etc. Been to gastro & a urologist. Nothing has come back with a red flag except for her high IgG Gliadin & her numbers for Celiac rising.

My husband & I decided to take her off Gluten about 3 weeks ago & she has not had any stomach issues, she's been eating a lot more (she would never eat or was very picky), her eyes aren't as dark underneath, hasn't been having potty accidents as much, is generally in a better mood, feels heavier when carried, etc. We did go out to eat one morning after a soccer game & ate at a restaurant w/family that didn't have anything gluten-free so we got her pancakes...she ate a bunch & complained after that her tummy hurt. Almost right after taking her last bite. It really shed some more light on it for my parents that were not as convinced as we were/are.

Anyway, my point is, is that yes, you can definitely have Celiac or a gluten intolerance even though the tests came back neg. I would definitely get your son back on a gluten-free diet & see how much better he gets!

Good luck!

Jenn

[brigitam]

Thanks for the response. His behaviour over the past few days has been atrocious and I am starting to remember how manic he was as a toddler and how we used to laugh and say he looked like a starving ethiopian and all sorts of other things that make it all just fit. At a birthday party the other day I noticed my friends son who is not yet two was his height... it's pretty scary. My stupid paediatrician has cast the blame on me saying we are too healthy (not even true.. I love cakes and butter and cheese etc) because I wasn't keen on the idea of feeding him McDonalds to fatten him up. More motivated, today I called the Coeliac Society (here in Australia) and am being referred to a specialist next week. I am also going to try and have swabs done to see if he has the gene. Regardless of what comes up I will put him back on a gluten-free diet. Its great to hear other stories and that it's not always so clear cut. Thanks again for your help. I now no longer feel like I am overreacting!

[ProudMommyDebbie]

My three children's actual celiac test result was negative, but they did celiac anti bodies as well, and this is how it was diagnosed.

Their Sedimentation Rate (SED) in some of the blood work is too high, meaning their is inflammation in their body, and there Alkaline Phosphate blood levels (ALKP) are too high, which means they test for problems in the liver and in bone with some made in the intestines and kidneys.

Inflammation is definitive to intestine damage - hence celiac.

My 6 yr old daughter's Sed rate is a 27 (0-20 is normal) and her ALKP level is 271 (50-136 is normal)

My youngest daughter who will turn 4 next week's Sed rate is a 35 (0-20 is normal) and her ALKP level is 227 (50-136 is normal)

My 8 yr old son's Sed rate is a 12 (0-9 is normal for him)and her ALKP level is 236 (50-136 is normal)

You need to have a lot of blood run, and there are things they check to find celiac, not just by one result.

Get a second opinion, do what you feel is best, mother's instinct is correct a lot of the time.

hugs and good luck.

[brigitam]

Thanks Debbie, I haven't got a copy of the blood tests, my ped wouldn't hand them over but I will have the specialist look at them for me on tuesday. My son has been back on gluten for 2 weeks now. His behaviour has been terrible, he is wetting the bed every night (wasn't at all gluten-free), he has had night terrors, he is not eating, has diarrhea, and has lost 1kg which is a bit when you are only 12kg. I am so nervous and anxious and excited about having him checked out on tuesday. I hope we get some answers soon.

[tarnalberry]

Your doctor cannot legally refuse to give you your test results. I'd call the office back and tell them to mail you the results.

[brigitam]

I did know that they can't legally refuse but it wasn't worth arguing over. The specialist looked through the tests today and he is vitamin d deficient, but other than that all is okay...he is just very small and thin. Regardless he is doing a biopsy in 6 weeks though I was told there is only 5% chance he is Celiac with negative blood results. I don't know if he is looking for other things as well. I'm looking forward to getting some definitive answers. Thanks everyone for you help.

[GFinDC]

I did know that they can't legally refuse but it wasn't worth arguing over. The specialist looked through the tests today and he is vitamin d deficient, but other than that all is okay...he is just very small and thin. Regardless he is doing a biopsy in 6 weeks though I was told there is only 5% chance he is Celiac with negative blood results. I don't know if he is looking for other things as well. I'm looking forward to getting some definitive answers. Thanks everyone for you help.

I imagine you are recording his symptoms every day and any changes right? You could consider sending those to the doc every week say on Wednesday so he/she knows how things are going. It might help them make their diagnosis sooner.

[lizajane]

I did know that they can't legally refuse but it wasn't worth arguing over. The specialist looked through the tests today and he is vitamin d deficient, but other than that all is okay...he is just very small and thin. Regardless he is doing a biopsy in 6 weeks though I was told there is only 5% chance he is Celiac with negative blood results. I don't know if he is looking for other things as well. I'm looking forward to getting some definitive answers. Thanks everyone for you help.

i have celiac and i had negative blood test results. and i had my blood test at 33.

[brigitam]

I have pushed our endoscopy to next week by going through the private system. I didn't want to risk him on a gluten diet for 6 weeks longer than needed no matter the costs. I figure that if the results come back positive it will be money very well spent. He has been on gluten his whole life, and had 2 weeks off a month ago. At the time of the endoscopy he will be on gluten for 4 1/2 weeks. Is this enough to show up celiac disease?

[brigitam]

Ok now I am really confused. We had our endoscopy yesterday.. and the doctor said it all looked good. We still have to wait for the lab results but with negative blood work, it seems pretty clear he is not Celiac. So now I have a 4 1/2 year old who is smaller in height and weight than his 3 year old sister. And you can say size doesn't matter but when you see your son half the size of his classmates it breaks your heart.. I know he has a hard time ahead of him. In addition, I have been keeping a poo- diary and his bowels are a mess. He was a reflux baby. He is low in vit D (not from sun- we live in Australia!) and he responded well to a gluten free diet. I am really at a loss. I will still give the gluten-free diet a 3 month trial but.. I wish I had some answers. I guess the answer is to accept the child you have. I know this sounds weird and maybe offensive to some of you out there suffering, but right now I wish we fit into the Celiac box and then everything would make a bit more sense. Thanks to everyone who posted and helped me out.

[Dixiebell]

The blood tests are not 100%. The damage can be patchy and even missed with the biopsy. He may not have enough damage yet.

"he responded well to a gluten free diet"

It looks to me like you have your answer already.

My sons blood tests were negative and we decided to not do the endoscopy because of the info. I had been reading. I had read that if you don't have much damage the blood test will probably be negative. I decided that if he did not get better gluten free then we would do further tests. He got better, fast. I was keeping a poo log also and some of them were alien like. It was very scary for us. My son is also short. He is about 1 foot shorter than everyone else his age.

That 'celiac box' is very large. There are so many different things that can happen to so many different people.

[mushroom]

Not only is "the 'celiac box' very large" , but also nature doesn't "do" boxes. It is only man who insists on boxes and people fitting in them. In nature there is every shape but a box. Gluten intolerance comes in many different forms too, celiac being only one of them. Keep your son off gluten and I am sure he will continue to improve.

[brigitam]

Thank you mushroom and dixiebell for your wise words. It is silly that I have felt the need for doctors conformation on this. We chose to get the endoscopy done incase other things were found and I guess to rule out any doubt that it was celiac. Now we still have doubt and it feels so cruel that we put my son through it. Boxes make things feel clear and easy but you are so right that nature doesn't do boxes. And today is a new day and day 1 gluten free- again! Cheers.