Nearly Convinced My Son Hasn't Got Celiac!

[Peta]

I feel this is such an ongoing drama... but when I read the amount of time it took some of you to get a diagnosis I feel it perhaps isn't so long afterall.

My 10 yr old son is awaiting a biopsy, which was ordered by his doctor who announced 'It looks like your son does have celiac'.

After asking for a copy of his blood test and celiac panel I realised that she has taken the positive gene test (he's DQ2 AND DQ8) to mean that he has celiac... I know that this does not necessarily mean that but just makes him predisposed.

When I read his celiac panel test everything was negative... he had Gliadin AgG & IgA, and Tissue transglutaminase IgG & IgA... Endomysial IgA NEGATIVE. They all showed <20 (normal range <20)

Isn't it very rare to still be diagnosed with celiac disease (via biopsy) when ALL of the antibody tests were within normal range?

His blood test showed slightly low (just below reference range) for White cell count and lymphocytes.

He does have some symptoms such as underweight, nausea, tingling in the feet and sometimes hands, flatulence, and foul stools (but not diarreah).

Am I putting him through an unecessary biopsy? Have any of your children been diagnosed with celiac despite 'ALL NEGATIVE' Celiac Panel?

Thanks,

Peta

[happygirl]

Hey Peta,

I have a friend who had negative bloodwork and a very, very, very definitive biopsy (highly positive for Celiac). It is generally rare....but not unheard of.

Even if the biopsy is negative, do you think its worth trying the diet?

Best of luck,

Laura

[kbtoyssni]

I've heard of a lot of people who have negative blood tests and postive biopsy and vice versa. I don't think doing the biopsy is completely without value here. I've missed your background - why do you think your son has celiac? Would you consider trying the diet after the biopsy?

[Nancym]

Definitely get the biopsy done and even if it is negative, give the gluten-free diet a trial. Some of us have wonderful responses to the diet despite the test outcomes.

[Ursa Major]

The blood tests are not as reliable as the doctors make you believe they are. And neither are biopsies. With his genes, and the symptoms he is experiencing, you can be pretty sure it is celiac disease, even if all the tests are negative. You should definitely give the diet a try, no matter what all the tests say.

The blood tests will only be positive if the villi are severely damaged already, and the same usually goes for the biopsy. It is possible that it has been caught BEFORE his villi are totally destroyed. I would think that is a good thing. With his symptoms, why wait until he is even sicker? The diet is a very valid test in itself and is a much better indication than any other tests.

[happygirl]

the other point to mention is that he could be non-Celiac gluten sensitive, meaning there isn't the villi damage that occurs in Celiac. However, the symptoms can be the same. The treatment is the same: gluten free diet.

Even though he has the Celiac genes doesn't mean its Celiac...so it could be a non-Celiac issue with gluten.

[2kids4me]

Our daughter was barely positive for anti-endomeseal antibodies and yet biopsy was conclusive for celaic with subtotal villous flattening.

The biposy can tell you what is happening in the intestine...lets say the biopsy is negative but he responds well to gluten free - then you know he is at the very least gluten intolerant .

It helps guide the dietary pathway so t speak.

Other food intolerances can have similar symptoms too.

Sandy

[Nantzie]

Also keep in mind that the damage to the intestine tends to be patchy. It's also microscopic, so there is no way for a doctor to see that an area looks like it might have damage.

I've heard the biopsy being described as splattering paint on a big wall, blindfolding yourself, and then trying to touch a painted spot with a toothpick. It's kind of a shot in the dark.

Which is one of the reasons so many people here have inconclusive or negative tests, but positive dietary response.

I think anyone who has celiac symptoms should try the gluten-free diet. The improvement is often life-changing, and there is no way to know for sure without trying the diet.

Nancy

[flurry]

I feel this is such an ongoing drama... but when I read the amount of time it took some of you to get a diagnosis I feel it perhaps isn't so long afterall.

My 10 yr old son is awaiting a biopsy, which was ordered by his doctor who announced 'It looks like your son does have celiac'.

After asking for a copy of his blood test and celiac panel I realised that she has taken the positive gene test (he's DQ2 AND DQ8) to mean that he has celiac... I know that this does not necessarily mean that but just makes him predisposed.

When I read his celiac panel test everything was negative... he had Gliadin AgG & IgA, and Tissue transglutaminase IgG & IgA... Endomysial IgA NEGATIVE. They all showed <20 (normal range <20)

Isn't it very rare to still be diagnosed with celiac disease (via biopsy) when ALL of the antibody tests were within normal range?

His blood test showed slightly low (just below reference range) for White cell count and lymphocytes.

He does have some symptoms such as underweight, nausea, tingling in the feet and sometimes hands, flatulence, and foul stools (but not diarreah).

Am I putting him through an unecessary biopsy? Have any of your children been diagnosed with celiac despite 'ALL NEGATIVE' Celiac Panel?

Thanks,

Peta

[flurry]

Hi

This is my first time here. My son was diagnosed last year at age 9 w/celiac. His blood tests wereiffy but he tested posotive with a biopsy and has the hepaformis dermatitis rash on his tush. He is fine off of gluten. The biopsy was worth it and I found it good for my son. It reinforced why he was to follow the diet. At 9 he was set in his ways and we had a battle over food. He is now gluten free and for the most part ok with it. 10 is a tough age to have to change the foods he likes. It is worth it thought to follow through with all of the tests.

I also have a 13 year old who was diagnosed as a baby. She also had all of the tests. She is actually allergic to almost every food there is but a celiac to boot.

Flurry

[Joanie & Meg]

New to board. My now 11year old daughter had positive blood tests 2 years ago. PCP said go gluten free no other tests need because of family history. My husband and I both tested -. 3 months later problems started again. sent to pedgi dr. She was horrible to say the least, never went back-went to childrens hospital and back on gluten for scoping which came back -. So off to subway for a wonderful sandwich. Of course this dr did say watch for returning problems and call if needed. Fast forward to this past summer-I had to leave work to take daughter to dr. pain was so severe. The PCP said forget testing and just put her back on the diet. Since because of the board I have learned alot! THANK YOU EVERYONE. Milk is now a problem we are working on. Also I let her have Mcdonald fries and yes the website says they contain wheat which I didn't know and I was making her sick what a nice mom.

We are still a work in progress and I have Pain med's for her tummy because of the stupid fries but life is so much better since she is gluten free. I can understand how the woman from " angry boy" must feel. My daughter became a wonderful child after getting of the gluten.

Sorry so long.

Joanie

P.S. Her friends a great about it because they don't like to see her sick. They worry about her and one even had special prepared hot dogs at her b-day party instead of pizza so she could eat. I hugged her.

[Guest lorlyn]

New to board. My now 11year old daughter had positive blood tests 2 years ago. PCP said go gluten free no other tests need because of family history. My husband and I both tested -. 3 months later problems started again. sent to pedgi dr. She was horrible to say the least, never went back-went to childrens hospital and back on gluten for scoping which came back -. So off to subway for a wonderful sandwich. Of course this dr did say watch for returning problems and call if needed. Fast forward to this past summer-I had to leave work to take daughter to dr. pain was so severe. The PCP said forget testing and just put her back on the diet. Since because of the board I have learned alot! THANK YOU EVERYONE. Milk is now a problem we are working on. Also I let her have Mcdonald fries and yes the website says they contain wheat which I didn't know and I was making her sick what a nice mom.

We are still a work in progress and I have Pain med's for her tummy because of the stupid fries but life is so much better since she is gluten free. I can understand how the woman from " angry boy" must feel. My daughter became a wonderful child after getting of the gluten.

Sorry so long.

Joanie

P.S. Her friends a great about it because they don't like to see her sick. They worry about her and one even had special prepared hot dogs at her b-day party instead of pizza so she could eat. I hugged her.

I am also new here and my daughter was diognoised-sp at age ten. She has been a realy good at understanding why she can't have the things that she ate before, but when we go into a grocery store she will sometimes get frustrated because she see's all the things she is missing. We try to get into the mind set the things she can't have are posion, It helps her through. I also let her have Mcdonalds FF but the last time she ate them they made her sick so she says she does not want them anymore. Good luck.