Confused About Testing For My Kids....

[wolfie]

Long story short: My IgG was 50, other bloodwork normal. Postive dietary response to gluten free diet. Gastro wants to do a biopsy, but that requires me to eat gluten again (been gluten free for 2 weeks). PCP was fine with me skipping the biopsy for now since I feel better (finally) and I am struggling with recovering from an eating disorder and she wants me to gain weight, not feel like crud and lose more weight. Took the kids in to see their Ped to see if they should be tested and he said not until I get a positive biopsy. They have no symptoms at all. He did say that within 5 years all kids would be screened between 18 months and 2 years old. I am so torn now.....I am really considering eating the gluten again to get the biopsy done to either make sure it is negative so I don't have to worry about the kids OR so that I can get them tested. How long do I have to eat the gluten to guarantee the test results won't be skewed from my 2 weeks gluten free?

Any thoughts here? Am I overreacting and should I just leave it all alone for now?

Thanks in advance!

[lonewolf]

Hello Wolfie,

Wonder if we're related? Your story sounds similar to mine - I haven't been diagnosed, but had such a positive response to gluten-free that I'm not about to suffer again to try to get positive results from tests. After talking to my doctor, she agreed that the kids should be tested, so I took them to the pediatrician and told him I wanted them tested, period. Fortunately, he agreed and was knowledgable about Celiac and gluten sensitivity. Could you find another pediatrician or be more firm with your current one? Why wait until they get sick to start looking?

Liz

[tarnalberry]

The doctor can still run the tests without you having a biopsy. He is providing a service for you, after all.

[mommida]

I would get the kids tested, depending on their ages. I would not put my body through a gluten challenge for a biopsy, that could miss the damage. My six year old son has been having dental problems from the enamel defects associated with Celiac. He had no typical symptoms. He has been gluten free since his sister's diagnoses, and his negative test results, about two years. The constipation issues he had since around 17 months of age have gotten much better. He does get a rash on his arms when he accidently has gluten. (The rash the pediatricians all said was nothing was part of his atypical gluten reaction.)

Early diagnoses can prevent too many associated problems, and any doctor that will not screen a child with an increased chance of Celiac is wrong.

Laura

[wolfie]

Hello Wolfie,

Wonder if we're related? Your story sounds similar to mine - I haven't been diagnosed, but had such a positive response to gluten-free that I'm not about to suffer again to try to get positive results from tests. After talking to my doctor, she agreed that the kids should be tested, so I took them to the pediatrician and told him I wanted them tested, period. Fortunately, he agreed and was knowledgable about Celiac and gluten sensitivity. Could you find another pediatrician or be more firm with your current one? Why wait until they get sick to start looking?

Liz

Thanks for your response. I really like my current Ped, but if I ask again and he won't test them, I may have to find a new one. He did seem knowledgable (more than my PCP) about Celiac and talked about how common it is (tip of the iceberg only ones being diagnosed and how many others that haven't been)....he seemed to think that the blood test was going to inflict too much pain to do for "no reason". IMO, I would rather have them go through a little pain there and know if they have a sensitivity and/or Celiac and prevent a lot more pain down the road. If you don't mind my asking..what prompted you to go gluten-free? How long have you been gluten-free? How did your kids test come out?

The doctor can still run the tests without you having a biopsy. He is providing a service for you, after all.

Good point!

I would get the kids tested, depending on their ages. I would not put my body through a gluten challenge for a biopsy, that could miss the damage. My six year old son has been having dental problems from the enamel defects associated with Celiac. He had no typical symptoms. He has been gluten free since his sister's diagnoses, and his negative test results, about two years. The constipation issues he had since around 17 months of age have gotten much better. He does get a rash on his arms when he accidently has gluten. (The rash the pediatricians all said was nothing was part of his atypical gluten reaction.)

Early diagnoses can prevent too many associated problems, and any doctor that will not screen a child with an increased chance of Celiac is wrong.

Laura

Thanks Laura! They are 3.5 and 9.5. I think I am just going to call back and ask him to do it for peace of mind. He has been seeing us since my son (the older one) was 2.

[Canadian Karen]

He did say that within 5 years all kids would be screened between 18 months and 2 years old.

Wow! That sounds promising!!! I really, really hope so. It would be just like in Italy..... So many missed diagnoses in children would then be caught before any major damage is done....

Karen

[lonewolf]

If you don't mind my asking..what prompted you to go gluten-free? How long have you been gluten-free? How did your kids test come out?

It's a very long story, but the short version is that I had horrible arthritis, got an ELISA test done to see if I had food allergies/sensitivities and found out I was sensitive to wheat as well as several other things. I went on a VERY strict diet and completely got over the arthritis. When I tried to start adding spelt and other gluten containing foods back I realized I was reacting. I found this website and started reading people's stories about having enamel trouble as children, being mis-diagnosed with IBS, etc. and realized that it all sounded like me. So I started being very carefully gluten-free before Thanksgiving and am feeling great. So, you could say wheat-free, gluten-lite for almost 10 years, firmly gluten-free for 2+ months.

My kids all tested negative (or should I say non-positive). I have my 10 year old son gluten-free on a trial basis anyway because of some symptoms that I think are gluten related. His teacher has noticed a positive change in his behavior. My 14 year old daughter is begging me to keep him gluten-free because she says she sees such a huge difference in his behavior too.

"lonewolf" Liz

[wolfie]

Wow! That sounds promising!!! I really, really hope so. It would be just like in Italy..... So many missed diagnoses in children would then be caught before any major damage is done....

Karen

I was very excited when I heard that! So many kids and adults would be helped by that test. I really wanted to ask him if that was coming why he just didn't test my kids! LOL! My 3 y/o was screaming and making a mess though, so I had to leave. He didn't mention that until we were on our way out.

It's a very long story, but the short version is that I had horrible arthritis, got an ELISA test done to see if I had food allergies/sensitivities and found out I was sensitive to wheat as well as several other things. I went on a VERY strict diet and completely got over the arthritis. When I tried to start adding spelt and other gluten containing foods back I realized I was reacting. I found this website and started reading people's stories about having enamel trouble as children, being mis-diagnosed with IBS, etc. and realized that it all sounded like me. So I started being very carefully gluten-free before Thanksgiving and am feeling great. So, you could say wheat-free, gluten-lite for almost 10 years, firmly gluten-free for 2+ months.

My kids all tested negative (or should I say non-positive). I have my 10 year old son gluten-free on a trial basis anyway because of some symptoms that I think are gluten related. His teacher has noticed a positive change in his behavior. My 14 year old daughter is begging me to keep him gluten-free because she says she sees such a huge difference in his behavior too.

"lonewolf" Liz

So glad that you are feeling better! I was (and still am) amazed at how quickly my symtpoms disappeared! I had enamel problems as a child too and was mis-diagnosed with IBS as well. Glad that your kids were non-positive! Maybe a gluten-free diet would help my 9.5 y/o not be so hyperactive and calm the heck down! He does want to eat my very $$ Kinnikinnick chocolate doughnuts...hmmmm?

BTW, how did you come up with your screenname?

Kim

It's a very long story, but the short version is that I had horrible arthritis, got an ELISA test done to see if I had food allergies/sensitivities and found out I was sensitive to wheat as well as several other things. I went on a VERY strict diet and completely got over the arthritis. When I tried to start adding spelt and other gluten containing foods back I realized I was reacting. I found this website and started reading people's stories about having enamel trouble as children, being mis-diagnosed with IBS, etc. and realized that it all sounded like me. So I started being very carefully gluten-free before Thanksgiving and am feeling great. So, you could say wheat-free, gluten-lite for almost 10 years, firmly gluten-free for 2+ months.

My kids all tested negative (or should I say non-positive). I have my 10 year old son gluten-free on a trial basis anyway because of some symptoms that I think are gluten related. His teacher has noticed a positive change in his behavior. My 14 year old daughter is begging me to keep him gluten-free because she says she sees such a huge difference in his behavior too.

"lonewolf" Liz

Liz...I responded to you, but somehow it got tacked onto my response to CanadianKaren below...sorry..don't know what happened!

[Canadian Karen]

I really wanted to ask him if that was coming why he just didn't test my kids! LOL! My 3 y/o was screaming and making a mess though, so I had to leave.

Kim

Oh, boy, I have SO BEEN THERE, says the mother of 4 yr old twin boys!!!

Hugs

Karen

[wolfie]

Oh, boy, I have SO BEEN THERE, says the mother of 4 yr old twin boys!!!

Hugs

Karen

Oh my!!! I can't imagine 2 of her!! LOL!! 4 y/o twins..WOW!!

[mommida]

I wonder if we start screening kids for Celiac, will the diagnoses rate for ADD and ADHD decline?

Do other people suspect gluten reactions are being diagnosed as ADD and ADHD?

L.

[Canadian Karen]

Most definitely! Without a doubt!

Karen

[wolfie]

I wonder if we start screening kids for Celiac, will the diagnoses rate for ADD and ADHD decline?

Do other people suspect gluten reactions are being diagnosed as ADD and ADHD?

L.

That would be interesting to follow. Great question!

[lonewolf]

He does want to eat my very $$ Kinnikinnick chocolate doughnuts...hmmmm?

BTW, how did you come up with your screenname?

My son would have eaten an entire package of the Kinnikinnick K-Too's - for $3.99 a pack I DON'T THINK SO! I did let him start eating a few when he went gluten-free, but now they're gone.

My last name is Wolf. We go to play Laser tag a lot (live near one, have 2 boys that love it) and I always use "Lonewolf" as my "codename". So it just popped into my head when I had to come up with a screen name.

I never knew that anyone else had enamel problems as a child until I found this website. I once had 12 cavities and I really did brush my teeth! My upper wisdom teeth had 6 or 7 cavities in them before they even broke the surface, so my dentist knew for sure that there really had been problems with my teeth. Funny, I haven't had a single cavity since going wheat-free 10 years ago.

Liz

[wolfie]

Well, I spoke with the nurse at my gastro's office and she said that I would have to eat a regular diet full of gluten for at least 4 weeks before the biopsy for it to be "accurate". That being said, she added that a negative would NOT rule out Celiac. I have felt better in the past 2 weeks gluten-free than I have felt in years.....I can't imagine doing that anytime soon. I plan to call the Ped's office back and just ask for the kids to be tested. Hopefully they will do it, if not, I will be looking for a new Ped.

Kim

[TCA]

Please keep in mind what the nurse said - that a negative test does not completely rule celiac disease out. My son is 3 and has had 2 negative biopsies. He's very small, been diagnosed with failure to thrive, had constant diarrhea all his life (to the point of his bottom bleeding most days from irritation), tooth enamel defects, and developmental delays (walking at 16 mos. and speech). His blood work showed 2 elevated enzymes (Ttg through the roof), but the other 2 were normal. With all of this info, the doc said he didn't have it. His symptoms have worsened. We started him on gluten-free diet 3 weeks ago and see tons of improvement. He's already gained almost a pound, the first he's gained in over 8 mos. His behavior is better, and NO DIARRHEA!!!!!!! I encourage you to get them tested, just take everything with a grain for salt and follow your instinct.

[Guest nini]

Please keep in mind what the nurse said - that a negative test does not completely rule celiac disease out. My son is 3 and has had 2 negative biopsies. He's very small, been diagnosed with failure to thrive, had constant diarrhea all his life (to the point of his bottom bleeding most days from irritation), tooth enamel defects, and developmental delays (walking at 16 mos. and speech). His blood work showed 2 elevated enzymes (Ttg through the roof), but the other 2 were normal. With all of this info, the doc said he didn't have it. His symptoms have worsened. We started him on gluten-free diet 3 weeks ago and see tons of improvement. He's already gained almost a pound, the first he's gained in over 8 mos. His behavior is better, and NO DIARRHEA!!!!!!! I encourage you to get them tested, just take everything with a grain for salt and follow your instinct.

I totally agree with this. I tested positive for Celiac with a blood test, HIGHLY POSITIVE. I never ever had the biopsy, nor do I ever intend to. I've been gluten free for almost 3 years now and have lost 100 pounds and feel better than I have in years. My daughters Ped. sent her to a Ped. GI who initially refused to test her for Celiac, then when I pushed, the tests he did run were negative or inconclusive, and he dx'ed her with IBS and said to feed her more whole wheat. The child breaks out in hives if she even touches anything with wheat... Anyway, after consulting with her Ped. I decided to try her on the diet because she did have some pretty major symptoms... within just a few days she was a completely different child. She is gluten free without a firm dx, but I won't put her back on gluten just to try to get one. We both know what happens when she accidentally gets glutened, Her ped. ended up saying, well, we know it's Celiac but we just won't put it in her permanent record... She's so much healthier without gluten.

The tests can only rule it in, so keep that in mind. The tests are not accurate enough to completely rule it out, ever.