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So Frustrated

Guest GoofyG

By Guest GoofyG
in Parents, Friends and Loved Ones of Celiacs

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Guest GoofyG
Guest GoofyG
Posted

They are sending DD who is 11mos to be tested. I'm wanting to test my 3yr old too. She is just as small, eats everything, anemic and only weighs 24lbs. Her sister is doing the same thing. The pediatrician said that if her sister (11mos old) test pos then they will test the 3yr old. The only thing I'm worried about is the false neg. What if the baby is pos, but shows a false neg. What do I do then, I feel like the 3yr old would be better to test. They are fine on their weight when they're born at 6mos they stop growing, and they become anemic too. I give up sometimes. I wish Dr would listen to the parents more. I needed to vent sorry. I don't know when we go to be tested. The pediatrician has to schedule with the ped gastro Dr. They said it could take months to get in.

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RiceGuy Collaborator
RiceGuy
Posted

From what I've read, very young children are more likely to get a false negative, so I'd agree that the three year old would make more sense to test. However, no matter what the results, both should be tested if you want an "official" diagnosis. Suggesting to test the three year old only if the yonger one tests positive is just not logical to me at all.

However, there shouldn't be anything stopping you from trying the gluten-free diet right away. If it makes a difference, then what would it matter how the tests turn out? Just consider if the diet helps, but the tests come back negative; would you feed them gluten again and let them suffer? I'm sure we both know the answer to that. Additionally, if you got the tests done today and they came back negative, wouldn't you want to try the diet anyway to see if it works? After all, you know the tests aren't so reliable, right?

So to me there's only one thing you need to do. But obviously there is some level of peace of mind that comes from having the tests done. I do understand that too. I just know from my experience that I don't care what any doctor would tell me. They steered me wrong for so long I cannot put any faith in the medical profession anymore.

Just my two cents...

Hope your children get well soon!

debral68 Newbie
debral68
Posted
They are sending DD who is 11mos to be tested. I'm wanting to test my 3yr old too. She is just as small, eats everything, anemic and only weighs 24lbs. Her sister is doing the same thing. The pediatrician said that if her sister (11mos old) test pos then they will test the 3yr old. The only thing I'm worried about is the false neg. What if the baby is pos, but shows a false neg. What do I do then, I feel like the 3yr old would be better to test. They are fine on their weight when they're born at 6mos they stop growing, and they become anemic too. I give up sometimes. I wish Dr would listen to the parents more. I needed to vent sorry. I don't know when we go to be tested. The pediatrician has to schedule with the ped gastro Dr. They said it could take months to get in.

They tested my daughter at about that age, blood test and also colonoscopy/endoscopy. She tested negative then. She also had poor weight gain. They re-tested again at about 2.5 and she tested positive, blood and biopsies. She's been gluten-free since 7/2006. She was 3 in Nov. She still continues to have poor weight gain though- she's only 25lbs. I have an 8mnth old and the GI dr said we shouldn't test her until she's well over a year old because of blood tests not being 100% accurate at that age.

Guest GoofyG
Guest GoofyG
Posted
From what I've read, very young children are more likely to get a false negative, so I'd agree that the three year old would make more sense to test. However, no matter what the results, both should be tested if you want an "official" diagnosis. Suggesting to test the three year old only if the yonger one tests positive is just not logical to me at all.

However, there shouldn't be anything stopping you from trying the gluten-free diet right away. If it makes a difference, then what would it matter how the tests turn out? Just consider if the diet helps, but the tests come back negative; would you feed them gluten again and let them suffer? I'm sure we both know the answer to that. Additionally, if you got the tests done today and they came back negative, wouldn't you want to try the diet anyway to see if it works? After all, you know the tests aren't so reliable, right?

So to me there's only one thing you need to do. But obviously there is some level of peace of mind that comes from having the tests done. I do understand that too. I just know from my experience that I don't care what any doctor would tell me. They steered me wrong for so long I cannot put any faith in the medical profession anymore.

Just my two cents...

Hope your children get well soon!

After all the testing I plan on trying them Gluten Free. The only thing is if they do good then that is GREAT. But when they start school and I don't have a Dr's note saying they have celiac disease. How do I go from there. So unless the Dr decides they have it because they are doing good on it.(Gluten Free) I'm going to test before I try Gluten Free. I hope this all makes since, not enough sleep lately. My brain is working faster then my my hands and mouth today.

Suzie-GFfamily Apprentice
Suzie-GFfamily
Posted
After all the testing I plan on trying them Gluten Free. The only thing is if they do good then that is GREAT. But when they start school and I don't have a Dr's note saying they have celiac disease. How do I go from there. So unless the Dr decides they have it because they are doing good on it.(Gluten Free) I'm going to test before I try Gluten Free. I hope this all makes since, not enough sleep lately. My brain is working faster then my my hands and mouth today.

I think it makes sense to pursue the testing now- at this point they are not gluten-free so it is a good opportunity to test. The dietary restrictions are life-long, so if you can get several types of diagnostic evidence, than that might help in the future if your children started to question "Why do I have to follow a gluten-free diet?". You may not get a positive result on the blood screen test, but you might, and you certainly won't know unless you have it done. The response to the diet will be another piece in the diagnostic puzzle.

You shouldn't have to wait until you see the Ped GI to have the blood screening test done. Your children's regular doctor should be able to order a screening test for celiac disease- it would be comparable to ordering a blood test for anemia or thyroid function- they don't need to be a GI specialist to order that test. It also makes sense to have the blood screen test before your appt with the Ped GI so they already have that info when you go for a consult.

Most places will now do a tissue transglutaminase (tTG) test to screen for celiac disease. If a total serum IgA test is done at the same time it would make it easier to interpret the tTG results because some children (as well as some adults) are IgA deficient.

There is a full-length journal article (from Jan 2005) on the diagnosis and treatment of celiac disease in children:

Open Original Shared Link

The full-length article has been summarized into a shorter, simpler pamphlet. The Clinical Practice Guideline Summary is available at the following site:

Open Original Shared Link

BTW- I also think that it doesn't make a lot of sense to only test your older child if the younger one has a positive result. What sort of rationale are they using for this idea? It makes no sense to me.

Suzie

Jestgar Rising Star
Jestgar
Posted

Ask the doctor to write out and sign that he's refusing to order a relatively inexpensive panel of tests for your daughter. Subtly imply that if she has Celiac, and has any related health issues later, you'll sue his license away.

Guest GoofyG
Guest GoofyG
Posted
Ask the doctor to write out and sign that he's refusing to order a relatively inexpensive panel of tests for your daughter. Subtly imply that if she has Celiac, and has any related health issues later, you'll sue his license away.

I go back next week for the 3yr olds yearly check up. I'm going to talk to the Dr then about testing her too. I'm also going to see if they can go on and do the blood work. We'll see what happens, other wise I'll take the 3yr old with me to the gastro at the same time. See what he says then. He may go on and test her too. It's all in God's hands. I'll keep it updated, I wish they would respect how I feel, and what I think should be done too. I know I'm not a Dr, but sometimes a Mother's intuition is stronger than the Dr.

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CarlaB Enthusiast
CarlaB
Posted

Jestgar has a good point, funny, too.

Your kids' doctor obviously does not take you seriously. I would not go to a doctor that did not take me seriously. It's a team effort, and if the doctor is not part of the team, it's time to find a new one.

You might take your husband along to the doctor's appt. Men are at times taken more seriously than women. It's not fair, but it's true. Sometimes I make it a point to have hubby there when I think he'll be treated with more respect than I ... like with contractors (we live in an old house). It's not that I can't handle it, it's that they respond better to him. I'd bet anything that your doctor would run the test for your husband.

It will also make the point that you are serious about this if you bring him along.

confused Community Regular
confused
Posted

I am so happy that all i had to do was ask our family dr to run the test for my son and she did. Of ocurse i had to go threw 5 doctors first to find an good one. Then all I had to do was call my doctor and tell him a family member tested positive for celiac and i wanted the test done on me. He drew up the labs and sent me in for blood work.

paula

Ursa Major Collaborator
Ursa Major
Posted

Goofy, I agree, there is no good reason to wait for months to have your kids tested. They both sound like they need to be on the gluten-free diet as soon as possible.

If it takes months for even testing, one of them may turn deathly ill by then. You simply can't wait. Demand that your doctor do the bloodwork immediately, and for both of your children. If he refuses, it is time to find yourself a new doctor.

And since both blood work and biopsy are highly unreliable in young children under six (and aren't that reliable after that age, either), trying the diet is always the best test. Good doctors, who understand about celiac disease, acknowledge that, and give an official diagnosis of gluten intolerance based on positive dietary response.

Guest GoofyG
Guest GoofyG
Posted
Goofy, I agree, there is no good reason to wait for months to have your kids tested. They both sound like they need to be on the gluten-free diet as soon as possible.

If it takes months for even testing, one of them may turn deathly ill by then. You simply can't wait. Demand that your doctor do the bloodwork immediately, and for both of your children. If he refuses, it is time to find yourself a new doctor.

And since both blood work and biopsy are highly unreliable in young children under six (and aren't that reliable after that age, either), trying the diet is always the best test. Good doctors, who understand about celiac disease, acknowledge that, and give an official diagnosis of gluten intolerance based on positive dietary response.

My husband isn't available to go to the Dr, due to his work schedule. I will find out next week when I talk face to face. The 3yr old will be with me. All of the ped gastro Dr at the hospital I will be going to, work with celiac. SO that is good news. My poor baby has been to a Dr every day since last week for something, her ears are bad on top of all that. If the Dr blows me off next week, then I will be looking into some other Dr.

CarlaB Enthusiast
CarlaB
Posted

You might try taking him off dairy. Dairy thickens mucus and contributes to ear infections. I have a friend whose kid even had tubes in his ears and still needed antibiotics constantly. Once he got off dairy, he was fine.

Don't worry about calcium, dairy is a poor source for it. Leafy greens are a better source (I chop them up and add them to everything -- rice, casseroles, chili, soup, etc.).

Guest GoofyG
Guest GoofyG
Posted
You might try taking him off dairy. Dairy thickens mucus and contributes to ear infections. I have a friend whose kid even had tubes in his ears and still needed antibiotics constantly. Once he got off dairy, he was fine.

Don't worry about calcium, dairy is a poor source for it. Leafy greens are a better source (I chop them up and add them to everything -- rice, casseroles, chili, soup, etc.).

She really doesn't eat that much dairy. She is EBF, she does love yogurt. She has tubes in her ears, she was doing good then she lost one. I look into how much dairy she does eat though.

CarlaB Enthusiast
CarlaB
Posted
She really doesn't eat that much dairy. She is EBF, she does love yogurt. She has tubes in her ears, she was doing good then she lost one. I look into how much dairy she does eat though.

What is EBF? Yogurt would be contributing to the thickening of mucus. It might be worth a try.

Guest GoofyG
Guest GoofyG
Posted
What is EBF? Yogurt would be contributing to the thickening of mucus. It might be worth a try.

EBF is exclusivly breast feed, I'll see about the yogurt.

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