Disagree With Doctors

[lovemyboy]

has anyone else put there child on the diet without the doctors approval, they act like he isn't sick enough to have the biopsy but i feel something is not right. both my husband and his father have celiacs. We've also taken him off milk and soy, but wondering other people who have done this is that anything with soy or milk or just that straight?

[Guest nini]

my daughter's GI dr. told me that she did not have Celiac, despite the fact that I (her mother) had just tested positive for it and she had all the symptoms that I had as a child... When I discussed trying the gluten-free diet with them for her, they poo pooed me and told me that she just had IBS and I needed to feed her MORE WHOLE WHEAT????!!!!!!! Anyway... I went back to her pediatrician and convinced HER that I was going to try the diet and just "see" if she improved. And boy did she! It was like having a whole new child in just a couple of days. So, her pediatrician basically admitted to me "well, we KNOW she has Celiac, we just can't prove it" ...

How old is your boy? My daughter was three when we did this... Also, we only eliminated gluten from her diet, she has no problems with milk or soy...

[lovemyboy]

my daughter's GI dr. told me that she did not have Celiac, despite the fact that I (her mother) had just tested positive for it and she had all the symptoms that I had as a child... When I discussed trying the gluten-free diet with them for her, they poo pooed me and told me that she just had IBS and I needed to feed her MORE WHOLE WHEAT????!!!!!!! Anyway... I went back to her pediatrician and convinced HER that I was going to try the diet and just "see" if she improved. And boy did she! It was like having a whole new child in just a couple of days. So, her pediatrician basically admitted to me "well, we KNOW she has Celiac, we just can't prove it" ...

How old is your boy? My daughter was three when we did this... Also, we only eliminated gluten from her diet, she has no problems with milk or soy...

He just turned two, we had orignally thought the problem was lastose which is why we are avoiding the milk and since i've read soy can also be an issue I thought maybe we should elimante that as well. The doctors are annoying about the whole thing like he needs to look like he's dieing before they do anything. He was more constipated than dirrhea but he also has not gained any wieght in a year so like hello something isn't right anyway will see how this goes.

[tarnalberry]

Since you are the one feeding him, not the doctors, the only person you need to convince is yourself. Lots of us here don't have "conclusive, doctor determined diagnoses", but have listened to our bodies and found what works for us.

[katerinvon]

has anyone else put there child on the diet without the doctors approval, they act like he isn't sick enough to have the biopsy but i feel something is not right. both my husband and his father have celiacs. We've also taken him off milk and soy, but wondering other people who have done this is that anything with soy or milk or just that straight?

I have a daughter age 2 on the fourth. Her Dr has said things like: It's just a virus. No even though she has sores on the outside, there won't be any damage on the inside. Everything will be fine once she is potty trained. She hasn't had any weight loss.

We put her on a gluten free diet on the recomendation of the clerk at the health food store, herself a celiac. She has done very well on the diet for a year.

Next week is her two year apointment. We will see what happens.

But it doesn't take a prescription for a diet.

We have never had milk problems, and we stay away from soy as a personal preferance. But we usually drink goat's milk, just because we raise our own goats.

Karen S.

[Guest nini]

"it does not take a prescription for the diet"

That's a good point Karen... So many of us seek our Dr.s approval on this, when all it really takes is to try a (relatively)simple diet and see if there are improvements... I think we as a society have gotten away from listening to our own bodies and instead putting our trust in outside sources, this is dangerous... As knoweledgeable as the medical Dr.s may be, (and I do believe they have their place) they don't know everything, and they are human and subject to pride and ignorance just like anyone else. Dr.s aren't perfect, they don't know EVERYTHING, they aren't GOD'S and when we stop giving them undue credit for being such, MAYBE they will actually start to practice real healing...

[Smunkeemom]

My 4 year old is gluten free without doctor approval. My grandfather has celiac disease and my 2 year old almost died from undiagnosed celiac disease (the kept saying she had a stomach virus, and then they switched to that she was constipated even though she was having D everyday and still puking and lost 11 pounds in 3 weeks which is a ton when you only weighed 20 to begin with) anyway, after my 2 year old got diagnosed we all got blood tests and my 4 year old's came back pos. on one thingy so we did a biopsy and then it was neg. Well, flash forward to a year later and the 4 year old is getting sick, crankyness, rashes, brain fog, smelly watery stools, trouble sleeping, and she lost 5 pounds in 2 weeks. I called her general doctor and he said she had a stomach virus, so knowing this run-around I called her GI who said that she might be having celiac symptoms, and I said "how you said she didn't have it?" and she said "well, she did but I didn't see any small bowel damage so I thought it wasn't that bad, so I didn't want to recomend the diet, because it's hard to follow"

I was so mad, so very very mad, anyway the GI wanted us to come back in and retest her, and she was high now on all 4 markers, and so she wants to do another biopsy, well by this time my 4 year old is tired of all this and says "can't I just go gluten free and be not sick now?" so we did. Her general doctor thinks that she "just had a virus" and that I am abusing her or something by keeping her gluten free, and the GI won't sign off because we haven't done another biopsy (even though biopsies rarely work with kids, I found that out since, so I am even madder that the doctor wasn't more clear about what the blood test results really meant) so, she is gluten free. Her GI wants us to gluten her for 2 weeks and go back and get a "real diagnosis" but I am not going to make the kid eat gluten, and since she snuck some a few weeks ago and got uber-sick she won't go near the stuff anyway, she may be 4 but she understands, she knows it makes her sick.

[lovemyboy]

Thanks Everyone

Its nice to know I'm not alone I started to feel like I was fighting an uphill battle, even the association told me to wait for a proper diagnoses acting like I would be sentancing my child to some horrible life. Which I don't understand because if he does have it what is everyone going to change thier tune and say oh its not that bad? Its so dumb I can't even believe the BS that surronds this disease.

Personally since I never really cooked before I met my DH and he is the one who has celiacs I can cook better gluten free anyway. We treated ourselves to a kitchen aid mixer for Christmas so I've been baking lots and besides my diseaster cookies everything else has turned out great. I wish I had found this forum a while ago its so nice to talk to others who have dealt with this.

Reading these posts has also made me realize it'll be way better if we make our house completely gluten free so I'm going to start looking into our toothpastes and shampoos and everything else. DH isn't as careful as he should be and is still getting sick sometimes so we obviously need to elimante everything so we are not cross contiminating or accidently ingesting gluten. Anyway I'm rambling now but Thanks for the resposes.

[debbiewil]

One more thing you might consider - Lactose intolerance is often the first sign of celiac disease. Since lactase, the enzyme needed to digest lactose, is in the top part of the villi, as soon as the villi start getting damaged, the body loses its lactase and can't digest lactose. You might find that after a few months gluten free, the villi will heal and lactose will no longer a problem and he can have milk again. Since you are already seeing a problem with lactose, if it is caused by celiac then there is already some villi damage.

Debbie

[Smunkeemom]

One more thing you might consider - Lactose intolerance is often the first sign of celiac disease. Since lactase, the enzyme needed to digest lactose, is in the top part of the villi, as soon as the villi start getting damaged, the body loses its lactase and can't digest lactose. You might find that after a few months gluten free, the villi will heal and lactose will no longer a problem and he can have milk again. Since you are already seeing a problem with lactose, if it is caused by celiac then there is already some villi damage.

Debbie

wow. I did not know that. It does make a lot of sense though, I am going to call my cousin her kid has lactose intolerance all of the sudden and is still sick off milk, I think she may need to have him checked out since celiac disease runs in our family.....wow. I never put that together before. You may have just helped out a 3 year old. Thanks.

[katerinvon]

My 4 year old is gluten free without doctor approval. My grandfather has celiac disease and my 2 year old almost died from undiagnosed celiac disease (the kept saying she had a stomach virus, and then they switched to that she was constipated even though she was having D everyday and still puking and lost 11 pounds in 3 weeks which is a ton when you only weighed 20 to begin with) anyway, after my 2 year old got diagnosed we all got blood tests and my 4 year old's came back pos. on one thingy so we did a biopsy and then it was neg. Well, flash forward to a year later and the 4 year old is getting sick, crankyness, rashes, brain fog, smelly watery stools, trouble sleeping, and she lost 5 pounds in 2 weeks. I called her general doctor and he said she had a stomach virus, so knowing this run-around I called her GI who said that she might be having celiac symptoms, and I said "how you said she didn't have it?" and she said "well, she did but I didn't see any small bowel damage so I thought it wasn't that bad, so I didn't want to recomend the diet, because it's hard to follow"

I was so mad, so very very mad, anyway the GI wanted us to come back in and retest her, and she was high now on all 4 markers, and so she wants to do another biopsy, well by this time my 4 year old is tired of all this and says "can't I just go gluten free and be not sick now?" so we did. Her general doctor thinks that she "just had a virus" and that I am abusing her or something by keeping her gluten free, and the GI won't sign off because we haven't done another biopsy (even though biopsies rarely work with kids, I found that out since, so I am even madder that the doctor wasn't more clear about what the blood test results really meant) so, she is gluten free. Her GI wants us to gluten her for 2 weeks and go back and get a "real diagnosis" but I am not going to make the kid eat gluten, and since she snuck some a few weeks ago and got uber-sick she won't go near the stuff anyway, she may be 4 but she understands, she knows it makes her sick.

One thing I have wondered is why people think a gluten free diet is so restrictive? People don't jump up and down about how restrictive a lactose free diet is or even think twice about giving up dairy products if they have an alergy. I don't see cooking gluten free as restrictive, just different. Our diet is probably more healthy in general because we are now avoiding a lot of the processed garbage and making meals from scratch. So many wonderful everyday things have always been gluten free.

I will admit that gluten free cooking can be inconvienient, because I can't unthinkingly reach for that package of processed garbage, throw it in the neuker, and call it supper. But is that really such a bad thing?

I don't like the idea of making my kid sick just for a positive diagnosis, either. Arn't we trying to AVOID doing damage? What about genetic testing? Wouldn't that give a yes or no answer no matter what the diet has been or what damage may or may not have been done? Are the tests too new or too expensive to be practical? Does anyone out there know?

Karen S

[zakismom]

One thing I have wondered is why people think a gluten free diet is so restrictive?

Thank you! Really the only "problem" is convenience food. Oh well, we make most of our own food and it tastes better and is better for us!

[lovemyboy]

One more thing you might consider - Lactose intolerance is often the first sign of celiac disease. Since lactase, the enzyme needed to digest lactose, is in the top part of the villi, as soon as the villi start getting damaged, the body loses its lactase and can't digest lactose. You might find that after a few months gluten free, the villi will heal and lactose will no longer a problem and he can have milk again. Since you are already seeing a problem with lactose, if it is caused by celiac then there is already some villi damage.

Debbie

Thanks I was aware of that, its why we moved onto thinking he had celiacs since he was off milk when he started getting nasty poops again. We are planning to reintroduce that after probably six months and see how it goes.

One thing I have wondered is why people think a gluten free diet is so restrictive?

I've wondered that too that's why we've said enough is enough, the stupid doctors can take there time all they want well my child suffers no thanks. Personally I think we eat better then we would without being on this diet.

[chrissy]

our ped gi told me that gluten free is a healthy diet and that they use it for other conditions also (irritable bowel, for example) he is having me put all of my blood tested positive children on the diet, even though one of them has not had a biopsy, one had a negative biopsy, and the other had an iffy biopsy.

christine

[shardawn1]

My son was intollerant to milk from day one. As soon as we started solid foods at 8 mos., he started screaming all night. I noted all ingredients in foods he ate and narrowed down the offenders to gluten. I spoke to his doctor and he said no, just keep introducing gluten to him a little at a time and he will get used to it. I did for a week and stopped. Put him on a gluten-free diet and saw immediate results. Dr. thought I was a nut but I didn't care. I even took the list of gluten-free medications in to him when my son was sick and he humored me by selecting from the gluten-free group, although he never believed me. Finally I made a GI appt myself. The GI did not test him at 2 because he had been on a gluten-free diet, but said he had every symptom, and was healthy, and that sometimes the mother knew best, no matter what the doctor says. My son is 7 and still intollerant to gluten, but outgrew the dairy at 5. I am thankful I did not listen, because he is healthy and does not know there is a different way to eat. Listen to your instincts and research everything possible.