Doctor Tells Me I Need To Eat Gluten For 15 Days!

[celiaco]

I have been on a gluten-free diet for 18 months and my life changed 100% for the better, my stomach does not hurt, I have so much energy, my body aches have disappeared, my mood is much better (ask my wife!), etc, etc... The problem is that I have three little children and the I am suspicious they are intolerant to gluten also as they are not growing at the rate they should be growing. Their pediatrician tells me that a gluten free diet for a kids is very stressful and before having the children examined he needs clinical proof that I am gluten intolerant in order to ask blood test to the children. He claims that the children don

[starrytrekchic]

Can you get a different doctor? My understanding is that a few weeks on gluten isn't enough for an accurate bloodtest. You'll almost certainly come up false negative. The normal gluten challenge time is 6 weeks.

Your doctor shouldn't be asking this of you, at all. You and your children aren't the same, and there is absolutely no reason you should be undergoing the test for them to get tested.

You may look into genetic testing, to see which, if any, of your kids have the same celiac-related genes as you. You can get those without a doctor. Otherwise, find a new doctor!

(To answer your actual question, I'd go with some wheat cereal--not fattening, but high in gluten. But really, you need to put your foot down with the doctor and tell him to order the kids' test anyway.)

[Dixiebell]

It would need to be more like three months instead of 15 days. The blood test can still come back as a false negative even after you have eaten gluten for that long. Possibly something to consider. Did the Dr. listen to the symptoms you have resolved by eating gluten free? And now the symptoms you are experiencing eating gluten again?

Are you in the US? When I ask our Dr. for a test, they do it. I am paying them for their service. It might be also that insurance would not cover testing if there seems not be a need to do them.

Their pediatrician tells me that a gluten free diet for a kids is very stressful

This response from Dr.s is so irritating.

It was stressful in the beginning, but not so much anymore. The reason it can be so stressful is because gluten is in so many things these days. But you already know how to eat gluten free so it would not be as difficult.

I would like to ask for advice in which food is very rich in gluten so I can eat it once or twice a day and have the same effect (intoxicate my body with gluten) for my blood tests...

Cream of Wheat.

[celiaco]

Can you get a different doctor? My understanding is that a few weeks on gluten isn't enough for an accurate bloodtest. You'll almost certainly come up false negative. The normal gluten challenge time is 6 weeks.

Your doctor shouldn't be asking this of you, at all. You and your children aren't the same, and there is absolutely no reason you should be undergoing the test for them to get tested.

You may look into genetic testing, to see which, if any, of your kids have the same celiac-related genes as you. You can get those without a doctor. Otherwise, find a new doctor!

(To answer your actual question, I'd go with some wheat cereal--not fattening, but high in gluten. But really, you need to put your foot down with the doctor and tell him to order the kids' test anyway.)

Starrytrekchic,

You read my mind... It sounded sketchy when he told me... the problem is that this is the best doctor in Mexico for celiac disease in children, but I have to accept that Mexico is maybe 10 years behind the US in this specific disease... 6 weeks! I feel so bad already!... I have been doing this for my kids sake and as you can imagine any parent woudl you anything for their kids... I will ask another opinion to another celiac doctor but the one that I talked over the phone to discuss what the first one told me agreed with the first...

[SGWhiskers]

I have been on a gluten-free diet for 18 months and my life changed 100% for the better, my stomach does not hurt, I have so much energy, my body aches have disappeared, my mood is much better (ask my wife!), etc, etc... The problem is that I have three little children and the I am suspicious they are intolerant to gluten also as they are not growing at the rate they should be growing. Their pediatrician tells me that a gluten free diet for a kids is very stressful and before having the children examined he needs clinical proof that I am gluten intolerant in order to ask blood test to the children. He claims that the children don

[SGWhiskers]

And if you want to continue with the gluten challenge, and want high gluten items, remember flour is about as high in gluten as you can get without eating wheat stalks. Oh, they sell vital wheat gluten from Bob's Red Mill in a bag. It would be like eating directly out of a bag of poison. Just pour a bunch of that into a bowl of barley soup or some cookies. (That's sarcasm, not a recipe). I can't even imagine the pain you are putting yourself through for that doctor. I know you really love your children and would do anything in the world for them, but I hope you can find another way of getting them a diagnosis.

[srall]

Ugh...I just typed a response and lost it. The gist was, my mom is also going through this and got so violently ill from the first gluten meal she ate. Argued with the nurse at the GI office...Doc told her to stop eating it because it was making her sick.

I can't understand why doctors won't diagnose based on dietary response. Makes no sense.

[nora-n]

no way 15 days is gonna be enough.

The least I find in literature, is 6 weeks, and we know it is more like 3 months before tests turn positive, could even be 6 months or even more.

[ravenwoodglass]

I think I would go about changing the doctor's mind one of 5 ways:

1) Get a letter from YOUR doctor diagnosing celiac based on response to diet and gluten challenge. Forget the blood work.

2) Call him up and let him know that the gluten is making you too sick to do the challenge for the 6-8 week minimum that is necessary for any chance at an accurate reading. Beg for mercy.

3) Insist that the children be tested via blood work and if he refuses, ask him to note in their medical charts that your specifically requested blood work and he refused. With this one, I would also be a bit forceful about the long term effects of gluten on a gluten sensitive child.

4) Get a different doctor to order the blood work. Even if that means switching pediatritians. (And shamefully, I will say lie to the new doc and say you have celiac. Don't go into how you've been diagnosed or for how long).

5) Just put them all on a gluten free diet for 3 months as a trial to see what happens then reintroduce.

I agree that you need to be back on gluten for at least 2 months and you still may have a negative panel.

I think the option I bolded will be the most effective. Also ask for a copy of those records just in case it gets 'lost'.

[celiaco]

It would need to be more like three months instead of 15 days. The blood test can still come back as a false negative even after you have eaten gluten for that long. Possibly something to consider. Did the Dr. listen to the symptoms you have resolved by eating gluten free? And now the symptoms you are experiencing eating gluten again?

Are you in the US? When I ask our Dr. for a test, they do it. I am paying them for their service. It might be also that insurance would not cover testing if there seems not be a need to do them.

Their pediatrician tells me that a gluten free diet for a kids is very stressful

This response from Dr.s is so irritating.

It was stressful in the beginning, but not so much anymore. The reason it can be so stressful is because gluten is in so many things these days. But you already know how to eat gluten free so it would not be as difficult.

I would like to ask for advice in which food is very rich in gluten so I can eat it once or twice a day and have the same effect (intoxicate my body with gluten) for my blood tests...

Cream of Wheat.

I agree with you 100%, I can test my kids right away if I want as the insurance is not paying for it, the only thing is that I was giving the Doctor too much credit but I also believe that we need to verify the kids for their posible gluten intorelance and get it over with.

You say that even if I eat gluten for 3 months the blood test could still be coming out as a false negative?, what test would you recommend me to do to avoid getting a false negative?

Thank you in advance for all your help.

[ravenwoodglass]

I agree with you 100%, I can test my kids right away if I want as the insurance is not paying for it, the only thing is that I was giving the Doctor too much credit but I also believe that we need to verify the kids for their posible gluten intorelance and get it over with.

You say that even if I eat gluten for 3 months the blood test could still be coming out as a false negative?, what test would you recommend me to do to avoid getting a false negative?

Thank you in advance for all your help.

Were you seeing a doctor for health problems that have resolved on the diet? If you were you should talk to the doctor and see if he will give you a diagnosis based on your response to the diet and the reaction from your challenge. Both blood and biopsy have higher rates of false negatives than we would like. Do be advised that the false negative rate for children is even higher than for adults. After the kids are tested if they seem to have gluten related issues do give them a strict trial of the diet.

[anabananakins]

I agree with you 100%, I can test my kids right away if I want as the insurance is not paying for it, the only thing is that I was giving the Doctor too much credit but I also believe that we need to verify the kids for their posible gluten intorelance and get it over with.

You say that even if I eat gluten for 3 months the blood test could still be coming out as a false negative?, what test would you recommend me to do to avoid getting a false negative?

Thank you in advance for all your help.

Yeah, even 3 months you could still get a false negative. I read so much trying to find a definitive answer and never got one - though I saw suggestions that it could take 12 months. It's so hard to know if you'd ever get a positive result. I ate massive amounts of gluten for about 14 weeks and still tested negative (though I gained 15 pounds with all the carb bingeing!). Since at that point I hadn't been gluten free it wasn't too bad for me, but I did feel pretty awful for most of the time. Since now a crumb gets me, there's no way I'll do that again. I also had the gene test and my doctor ruled out celiac based on that, but still, that's not entirely accurate since there's so much they don't know. All I know is that I feel so much better gluten free, that my ataxia has resolved and that studies have shown that people with gluten ataxia don't necessarily test positive to celiac via blood tests/biopsy. But there's a massive gap between what researchers are finding out and what doctors know. My GP is pretty good, she's fine with me being gluten free and thinks there's definitely levels of intolerance that don't show up in tests. But she'd never heard about the gluten ataxia, though since she'd done some basic neurological tests on me, she can see that there is a difference pre and post gluten-free diet.

Since you can get the testing done either way, if I were you I'd go back to being gluten free and I'd get your kids sorted. Then your whole house can go gluten free if you like, that's not stressful :-) Good luck to you all!

[eatmeat4good]

After reading all of these posts, I would like to say that going on the gluten free diet is free, legal, and a personal choice that does not require a prescription from a Dr. It seems Dr.'s don't want to believe in testing children who don't have numerous or classic symptoms. And even if they do test, it is likely that they may test negative even though they may be sensitive to gluten. My son's Dr. didn't want to test him because face swelling and asthma and leg pain aren't classic celiac symptoms. Well on doing some reading that Asthma can be caused by severe vitamin D deficiency, I wanted to try gluten free. After struggling to get someone to want to believe me or test my child and no one would, I just decided to put him on gluten free. It was a miracle. In one week he looked, acted, and felt better and now he tells me all the things he can do that he couldn't when he was eating gluten....like think...like walk to the front of the classroom without hurting. Like run in gym class. You are the parent and it is well within your rights to want the best for your child. The Miracle of Celiac is that it doesn't require a Dr. to bless your decision to go gluten free. I would advise you to stop eating gluten immediately and take all your children off it too. I really think they do not know what they are talking about when they say the diet is too stressful. It removes so much pain and sufferring to be gluten free. The only thing I can think of is that the Dr.'s are thinking of depriving children of pizza and sweets...which isn't even the case as there are gluten free substitutes. So here is my last thought. Trust yourself because I have found every Dr. I tried to consult cannot think clearly....why? Because they eat Gluten...I swear. Best of luck to you and your kids....and good for you trying to help them. I hope you let us know what you decide.

[mushroom]

Follow what the doctors are supposed to follow: The Hippocratic Oath - First, do no harm. If your child is being harmed by gluten, take him off it. You are not depriving him, you are giving him health. Do the same for yourself

[srall]

After reading all of these posts, I would like to say that going on the gluten free diet is free, legal, and a personal choice that does not require a prescription from a Dr. It seems Dr.'s don't want to believe in testing children who don't have numerous or classic symptoms. And even if they do test, it is likely that they may test negative even though they may be sensitive to gluten. My son's Dr. didn't want to test him because face swelling and asthma and leg pain aren't classic celiac symptoms. Well on doing some reading that Asthma can be caused by severe vitamin D deficiency, I wanted to try gluten free. After struggling to get someone to want to believe me or test my child and no one would, I just decided to put him on gluten free. It was a miracle. In one week he looked, acted, and felt better and now he tells me all the things he can do that he couldn't when he was eating gluten....like think...like walk to the front of the classroom without hurting. Like run in gym class. You are the parent and it is well within your rights to want the best for your child. The Miracle of Celiac is that it doesn't require a Dr. to bless your decision to go gluten free. I would advise you to stop eating gluten immediately and take all your children off it too. I really think they do not know what they are talking about when they say the diet is too stressful. It removes so much pain and sufferring to be gluten free. The only thing I can think of is that the Dr.'s are thinking of depriving children of pizza and sweets...which isn't even the case as there are gluten free substitutes. So here is my last thought. Trust yourself because I have found every Dr. I tried to consult cannot think clearly....why? Because they eat Gluten...I swear. Best of luck to you and your kids....and good for you trying to help them. I hope you let us know what you decide.

I love your post. I don't think going to a gluten free diet with my daughter was really that stressful compared to the crazy behavior, high anxiety, chronic D, falling behind in school, joint pain in a 7 year old, dark circles, anemia, vitamin deficiency, headaches, hives, rashes, chronic illness, worrying that she had cancer...

Thank heavens her pedi was on board, but I agree that I'm the parent. I decide what my family eats. My daughter has been totally on board too because as many of us can attest from our own experience, she feels amazing compared to 2 months ago.

[sandsurfgirl]

Oh for the love of Pete these docs make me crazy!! Fire that doctor yesterday. If he is saying something that stupid I wouldn't trust a thing the idiot says.

Get a better pediatrician and stop eating gluten. That's just madness!

He is prejudiced about dietary issues and totally ignorant. sorry to rant but I read too many stories like this and it just makes me angry because of my own past history with doctors.