Furious With Stupid Doctors

[MarsupialMama]

I guess I'm here to rant!! And ask a question. Are there any tests out there for celiac disease where you DONT have to currently be on gluten to have positive results?

Our family went gluten free 2 1/2 years ago and we had phenomenal turn around with me and two of my children's health issues. The difference was like night and day, almost immediately. All the typical signs of celiac were there, and they all disappeared. We never had the tests done because it was my understanding that most were unreliable anyway with children under age 6, and we didn't want to keep her on gluten another day if that was the issue. The test is in the diet, so they say. So we started the diet.

To make a long story short, now we've moved to a new state and I am having to deal with a group of doctors that are idiots (no, i don't have a choice in the matter, and no, I can't switch doctors. Part of that "long story"). Anyway, we are dairy and gluten free, and these doctors see this as a "very restricted dietary habits" rather than food allergies, and they think it is a "starvation diet". They are wanting to test my daughter for celiac to disprove "mom's theory" that she has gluten issues.

I wouldn't care if they test for it, but even if she comes out "negative" I'm not going to put her BACK on it, when I've seen such huge changes in her. I think that is what they want - they don't want to see a "child have to live with these restricted dietary habits unless it is proven that it is 100% necessary". The difference is, I've lived my whole life SICK because of dairy and gluten intolerances. Why should my children have to live the same way - sick all the time? We use gluten free and dairy free alternatives! What is wrong with that?

What I DO care about is if they start pressuring me to put her back on gluten FOR the test. That's why I'm wondering if there are any tests they can do while NOT consuming gluten that are actually reliable.

I can't believe how stupid doctors can be. Like I really feel like being gluten free myself?? Like I really feel like spending all the extra time, energy, money, and thought to live a gluten free life? For what? For a made-up theory in my head? Aaaaaaugh!

I am trying to not feel attacked, but there really isn't any reason they've given me for wanting to test her (except to prove me wrong?? I dont get it) They look at me like I'm crazy when I have explained the gluten-issue (only when they've asked) with her, and yet I have to admit we haven't had the biopsy done. So they wonder why someone would live a gluten-free life without a "diagnosis."

I am so angry I want to shred these doctors. I know they are in a system where "diagnosis is everything" but WHERE IS THE COMMON SENSE!??! AAAAAAAACK!

[lovegrov]

Just tell them no test. End of story.

richard

[chasbari]

Wow, so you not only moved but went through a time warp as well. They sound like they are in the dark ages. Stick to your guns and avoid them for anything if at all possible. I know I don't know enough about your situation. I know my doctor was willing to go with anecdotal info because my blood test was negative and I was very unwilling to do a gluten challenge. Please take this poisonous substance until we can determine if it is poisonous to you or not. This seems to be a real problem. Ingest another poison and the poison control center would recommend you stop ingesting it immediately to get out of harms way. Fortunately (or, unfortunately) my scope was so blatantly positive that I did get the DX without having to go back on glutens. Over two years later and I still have "damage consistent with celiac disease" in spite of being fastidiously gluten-free. I certainly hope you are able to work around your present dilemma. Can you take the kids out of town at all for treatment? Can you have your present doctors communicate with your old pediatrician?

[Kay DH]

I wish they had tests in which you didn't need to poison yourself. The genetic test doesn't require this, but it only indicates if you have the HLA DQ2 or (and) DQ8 gene(s), not if celiac is activated. I doubt it would help if you map out what you eat in terms of nutrition, because doctors are very lacking in this knowledge, too. Perhaps a note from a nutritionist would help. A doctor friend of mine said they only studied celiac for a few minutes in school, and she knew nothing about it. All you can do is say no.

[kareng]

The thing that worries me here is the " starvation diet" comment. I don't think you are trying to starve them. Are your kids normal sized & weight? Make sure they are getting the vitamins, proteins and fats needed for healthy growth. Maybe you could write down what they eat & aprroximate amounts for a few days and show the doc.

I had a kid that wouldn't eat meat when he was little. He was still in the 75 th percentile for height & weight but the no meat really bothered the doctor. He took a multivitamin for the iron. It was silly. He ate cheese and peanuts for protein.

[MarsupialMama]

My daughter ended up in the hospital ER due to a stomach virus and dehydration (very common) which had gotten really bad. While there, they take the history, etc. Wouldn't have mentioned the gluten thing, except I didnt want them giving her any meds with gluten in it (not that they would know if it had it anyway I guess). In any case, some smart-ass nutrtionist comes in, and then turns around and turns the doctors against us, telling the doctors that "Hundreds of people are on this gluten-free diet thing, when they dont need to be, and it's a fad, and its really dangerous, and these people are putting this child on a starvation diet and she's going to die, you can't get enough nutrition on a diet like this." She even had the gall to falsify my child's medical record (they started doing an intake/output (food/liquid) chart to see what she was holding down) so it looks like, yes, it is impossible to get the required food! We are trying to get that corrected to. I am planning on getting a lawyer if she doesn't voluntarily change them because you know what this turns into - "starvation diet"..... Now the "parents" are crazy and horrible, not wanting to feed their child. Call Social Services. She already threatened us with that. Can you imagine? I can't believe that some UNEDUCATED dippy little nutritionist is threatening me with Social Services because of a gluten issue.

It was just a horrible chain of events, and the "nutrtionist" was the only one who made all the doctors upset about it, because they rely on her infomation (since they know nothing about nutrition). OH well. Glad at least people on this board understand more than the average Joe out there. It makes me feel a little more normal.

[laura4669]

First, I would tell the doctors that you are your children's parent, not them, and it is your job to protect them and do what is in their best interests. You are not changing their diet, end of story. Doctors do not know everything, and in my experience, they did nothing to help me heal, just wanted to give me drugs to cover up my symptoms.

Second, there are many diets around the world that eat little or no wheat/dairy. Look at the Asian or Mediterranean diets. They eat mostly fish, meat, veggies, rice, fruit with small amounts of dairy (goats milk) and wheat. These diets are extremely healthy.

[kareng]

My daughter ended up in the hospital ER due to a stomach virus and dehydration (very common) which had gotten really bad. While there, they take the history, etc. Wouldn't have mentioned the gluten thing, except I didnt want them giving her any meds with gluten in it (not that they would know if it had it anyway I guess). In any case, some smart-ass nutrtionist comes in, and then turns around and turns the doctors against us, telling the doctors that "Hundreds of people are on this gluten-free diet thing, when they dont need to be, and it's a fad, and its really dangerous, and these people are putting this child on a starvation diet and she's going to die, you can't get enough nutrition on a diet like this." She even had the gall to falsify my child's medical record (they started doing an intake/output (food/liquid) chart to see what she was holding down) so it looks like, yes, it is impossible to get the required food! We are trying to get that corrected to. I am planning on getting a lawyer if she doesn't voluntarily change them because you know what this turns into - "starvation diet"..... Now the "parents" are crazy and horrible, not wanting to feed their child. Call Social Services. She already threatened us with that. Can you imagine? I can't believe that some UNEDUCATED dippy little nutritionist is threatening me with Social Services because of a gluten issue.

It was just a horrible chain of events, and the "nutrtionist" was the only one who made all the doctors upset about it, because they rely on her infomation (since they know nothing about nutrition). OH well. Glad at least people on this board understand more than the average Joe out there. It makes me feel a little more normal.

This is even more reason for you to be extra careful and document what they eat. Document big activities like soccer practice or dance classes to show energy levels. Take pics of them riding bikes and at the playground. Take pictures of the kids eating or having gluten-free cupcakes. Pics that a normal camera bug patent might take. Make sure they eat in front of other people outside the family. Play group, neighborhood, etc. Take bags of popcorn mixed with M & Ms out to all the kids playing in the neighborhood. That sort of thing.

I worked at a childrens hospital and kids do get taken away from parents who don't feed them right. You have a warning that you are being watched, even if it's not warranted. It can take weeks or months to get a kid back when taken by social services.

[Dixiebell]

Maybe you can get the Dr. and nutrtionist some updated information on the gluten-free diet. Sounds like maybe they have some very outdated information. If your child is not getting the nutrients she needs, that should show up on blood tests for vitamin and mineral levels.

Unfortunately Dr.s and other medical 'professionals' still rely on the 'food pryamid' because it is what they and we have been taught. ex: my mother thinks she needs to eat high fiber gluten filled pasta and bread to get fiber in her diet, this is what her Dr. tells her, when infact the best, IMO, is from fruits & veggies.

'Change' is very hard for some people, even if it isn't them that is changing.

A thought: What about autistic children who are on a gluten-free/CF diet and it has helped them? What do the Dr.s and nutrtionists say about that?

[AzizaRivers]

I wish they had tests in which you didn't need to poison yourself. The genetic test doesn't require this, but it only indicates if you have the HLA DQ2 or (and) DQ8 gene(s), not if celiac is activated. I doubt it would help if you map out what you eat in terms of nutrition, because doctors are very lacking in this knowledge, too. Perhaps a note from a nutritionist would help. A doctor friend of mine said they only studied celiac for a few minutes in school, and she knew nothing about it. All you can do is say no.

Keep in mind that there have been some 27 genes shown to be associated with celiac and non-celiac gluten intolerance BESIDES DQ2 and DQ8 genes..those are just the two most commonly recognized and by some doctors and organizations, the only accepted. My GI tested me and when I turned up not to have them, we did an endoscopy and diet trial and he diagnosed me with Celiac, aware that there is so much about this disease that is not yet understood by doctors.

I'm not sure where the OP is from, but I've heard in Europe they recognize more genes than the US doctors typically do.

[kareng]

Maybe you can get the Dr. and nutrtionist some updated information on the gluten-free diet. Sounds like maybe they have some very outdated information. If your child is not getting the nutrients she needs, that should show up on blood tests for vitamin and mineral levels.

Unfortunately Dr.s and other medical 'professionals' still rely on the 'food pryamid' because it is what they and we have been taught. ex: my mother thinks she needs to eat high fiber gluten filled pasta and bread to get fiber in her diet, this is what her Dr. tells her, when infact the best, IMO, is from fruits & veggies.

'Change' is very hard for some people, even if it isn't them that is changing.

A thought: What about autistic children who are on a gluten-free/CF diet and it has helped them? What do the Dr.s and nutrtionists say about that?

A lot of docs say that gluten-free/cf for autism is a fad diet. Some say try it if you like, it won't hurt.

[Jestgar]

This is even more reason for you to be extra careful and document what they eat. Document big activities like soccer practice or dance classes to show energy levels. Take pics of them riding bikes and at the playground. Take pictures of the kids eating or having gluten-free cupcakes.

I'm not saying this is ridiculous, but this is ridiculous!Why should you have to prove that your child is healthy when you don't feed them junk food? What is so restrictive about a gluten-free, df diet? There is nothing you need from these foods.

It just infuriates me that some jackass doctor can tell a mom who's taking excellent care of her children that she needs to feed them the same (crappy) food that other kids eat in order for them to be healthy.

As someone pointed out, there are extremely healthy wheat free, dairy free cultures.

File a complaint with the office. Tell them that your children eat healthy, whole foods, not prepackaged crap, and the physician you've been assigned is insisting you put them on processed, chemical laden, fat and sugar added cereals, because HE thinks that's how they should eat. Tell them you want a competent physician, or your going to get a lawyer, because this man is trying to harm your children.

Have fun with it. Ya got nuthin to lose.

[cassP]

Keep in mind that there have been some 27 genes shown to be associated with celiac and non-celiac gluten intolerance BESIDES DQ2 and DQ8 genes..those are just the two most commonly recognized and by some doctors and organizations, the only accepted. My GI tested me and when I turned up not to have them, we did an endoscopy and diet trial and he diagnosed me with Celiac, aware that there is so much about this disease that is not yet understood by doctors.

I'm not sure where the OP is from, but I've heard in Europe they recognize more genes than the US doctors typically do.

wow, i like your doctor

[Jestgar]

Anyway, we are dairy and gluten free, and these doctors see this as a "very restricted dietary habits" rather than food allergies, and they think it is a "starvation diet". They are wanting to test my daughter for celiac to disprove "mom's theory" that she has gluten issues.

I wouldn't care if they test for it, but even if she comes out "negative" I'm not going to put her BACK on it, when I've seen such huge changes in her. I think that is what they want - they don't want to see a "child have to live with these restricted dietary habits unless it is proven that it is 100% necessary".

Another option. Tell them know how sick your children were before you changed their diet. Tell them you will consider putting them on gluten for a test if the office will give you signed documentation that the will cover all medical cost that arise as a result of her becoming sick from the gluten, including ER visits for pain and dehydration from diarrhea, any long term sequelae, and any issues your son may have as a result of coming in contact with gluten while it's in the house for your daughter to eat.

[srall]

Oh My G...

I am literally nauseated from your post. I'm in disbelief. Where are you???? I just can't believe just a visceral response from the doctors and "nutritionist"

This just makes me praise the Lord for my daughter's pedi. I took her off gluten 6 weeks before her appt because her body was literally falling apart. I was gearing myself up for a cancer diagnosis. That's how awful she looked and felt. Gluten/dairy and corn free has been LIFE CHANGING for both of us. I wouldn't put her or me back on for the world.

And another thing, we are all eating so much healthier than when we were on what I like to call The Great American Diet Experiment That is Clearly Not Working, that I shudder when I think about the CRAP we were putting into our bodies before. This is insanity. Recommend some literature to them and send them to this site to read for a couple of hours. That's the only advice I can give. I really wish I could say something more useful.

YOU ARE NOT CRAZY!! You are right. I know how much better a child is when they stop eating things that are poisoning them. Good luck.

[srall]

Actually I may be able to help you. My friend just did some blood testing and found she was gluten intolerant and she didn't have to have gluten in her system. I'm going to text her for the name of the lab and a website address and then I'll get that to you. It may be later in the day or week because she's traveling. But I know she also did the tests for her kids and they were gluten intolerant.

[kareng]

I'm not saying this is ridiculous, but this is ridiculous!Why should you have to prove that your child is healthy when you don't feed them junk food? What is so restrictive about a gluten-free, df diet? There is nothing you need from these foods.

It just infuriates me that some jackass doctor can tell a mom who's taking excellent care of her children that she needs to feed them the same (crappy) food that other kids eat in order for them to be healthy.

As someone pointed out, there are extremely healthy wheat free, dairy free cultures.

File a complaint with the office. Tell them that your children eat healthy, whole foods, not prepackaged crap, and the physician you've been assigned is insisting you put them on processed, chemical laden, fat and sugar added cereals, because HE thinks that's how they should eat. Tell them you want a competent physician, or your going to get a lawyer, because this man is trying to harm your children.

Have fun with it. Ya got nuthin to lose.

It is ridiculous, agreed. But having worked to get children taken away from really bad parents, I just want to make sure she has a few things in place. Once the " bad parent" label is brought up, it can be hard to get rid of. I thought if she showed the doc what the kids actually ate in a week, they might see how normal and healthy it is.

Having pictures of her kids making soup or eating birthday cupcakes will be nice to have. They can come in handy if this gets out of hand.

Another thought... Did the previous doctor document the tummy troubles and that they improved? Get a copy for yourself and make a copy to take to the next doctor appt.

[Jestgar]

I thought if she showed the doc what the kids actually ate in a week, they might see how normal and healthy it is.

Having pictures of her kids making soup or eating birthday cupcakes will be nice to have. They can come in handy if this gets out of hand.

It's a brilliant idea, it just should have never been needed to be thought.

[okieinalaska]

So sorry you are going through all of this! I would also keep a food diary of what the kids are eating as well as the photos.

[weluvgators]

I am sorry that you are having to endure uneducated medical "care". We are in a similar situation with the diagnostics, but we have recently gained more documentation of the severity of our issues (after 4 1/2 years on the diet). It has taken a lot of doctors to find much understanding though, and we have gone straight to the ones that had recommendations from other celiac and gluten intolerant educated people. We have been unable to do a gluten trial, and we have also been unable to find a doctor willing to DO a gluten trial on us - even they recognize that it is a crazy, crazy thing to do! Unfortunately, it was only recognized because one of our children (the "less" sensitive one) has past anaphylactic episodes from incidental exposure.

In our hospitalizations . . . they almost seem inevitable at times with this beast! . . . the best defense we had was knowledgeable and understanding caregivers already on our team. Just being able to tell them that we have history and understanding of what we are dealing with and who they can call to get more information seems to have been enough. I fully understand how disruptive moves can be, and we have struggled with that problem ourselves at times . . . and we are sure to struggle with it again, as another move is probable - multiple moves are probable.

I am so sorry that you are being subjected to a harmful dietitian as well. I would put together some daily meal plans, or simply list all of the foods that your child does eat. It was critical for me to help the dietitian and chef at the hospital to make safe food (and meal planning) for my daughter. The last thing that our gluten sensitive kids need in a medical crisis is gluten exposure. They actually had my daughter on a more restrictive diet in the hospital than at home because they also eliminated all of her IgE serum screen positives. But by sitting down with the dietitian to review HER meal planning for our diet (she was blank - I had to tell her what to do ), we were able to work out how well our family DOES eat. It also helped her to understand some of the help that we needed from a dietitian that she could not answer for us. Our pediatrician still refers to our diet as "restrictive" which drives me batty, but we keep talking about how wholesome my kids' diets are . . . it seems to be a never ending conversation at times with people who have little experience living with this condition! Unfortunately, our pediatrician has a celiac niece and another doctor in the group is celiac . . . it seems that there *should* be much more understanding! BUT THERE ISN'T! so sad . . .

We do keep extensive records of the problems that we have had with gluten, as we have to tell the stories in order to get medical care and help that doesn't harm us! I have had to tell the stories and seem crazy at times, yet we have only gotten stronger and stronger warnings from our medical care providers to NOT do a gluten challenge UNLESS in a hospital setting. I am waiting to see what they may advise for our youngest who has never had an oral gluten challenge . . . yet I know the answer as I know what cross contamination does to him. BTW - when we went back and saw the pedi rheumatologist after our last hospitalization, I exclaimed that we have been unable to reintroduce any processed foods, and she said that was probably a good thing! She is a top-notch doctor at a chidren's research hospital, yet she was not all that familiar with gluten induced arthritis issues.

I wish you well in all of this. I would also start exploring legal defense strategies if you can. I have used my pre-paid legal services to consult on some of the issues that have come up for us related to gluten and our health and safety. Feel free to email me if you want more information. You can find my email on my profile page. If you are in Indiana, Washington, or California (Bay Area), I can share who we have used to help us in our medical care. Ultimately, we have had to travel a LOT to find medical care that can actually HELP us.

About testing, we used Enterolab (including the genetic screen), and we have run Prometheus panels on three of us (two were done on gluten free diets - the third was done on dad who eats gluten outside of the home only and is very good about following strict cleaning protocols upon home reentry). Having the Prometheus Plus panel done, even on a gluten free diet, was helpful *FOR US* because we fit the genetics bill nicely (lots of DQ2 and DQ8 here, and the "odd" DD with neuro issues is DQ2/DQ6). I did the Enterolab testing on our own for my kids about 2 years into the diet to better understand *what* it was that we were dealing with. All of our Enterolab testing was done YEARS into our gluten free diets, and it was still incredibly helpful information for us. However, we seem to be on the *extreme* end of gluten super sensitivity . . . at least according to *some* of the doctors (that pedi dermatologist told me that she had many patients telling her the same things we were saying, and the pedi gastroenterologist was also nodding her understanding when I was showing her my infuriating whole "gluten free" grain tests that were positive for gluten.

Have you considered finding a specialist to consult with in all of this? Second opinions are very important in unraveling the complexity of gluten issues for some. Good luck, Mama!

[beebs]

I can't believe the nutritionist said that Gluten free diet was a fad. Tell that to my mother who the Drs had her convinced she had bowel cancer after being very ill for years and losting 100pounds in 18months and looked like a starving refugee with a massive pot belly. UGH! So infuriating.

As if anyone would just *choose* to go on the diet. As far as I can tell it is a big PITA! And we've only been doing it for 4 days!

Since when did a mothers instinct become so invalid? So ridiculous? I have been fighting with Drs for over a year to get them to take my kids illness sersiously - such a joke!

Good luck I really hope that they leave you alone and get on with actually keeping and eye on actual abusive parents.

[cassP]

i think that "Nutritionist" is way overdue for some CEUs

[eatmeat4good]

I would not accept treatment from such incompetent physicians. File a complaint on the nutritionist. Surely they have licensing boards for nutritionists. I would be furious. I would file a complaint on the Dr. too. They all need a copy of Celiac, The Hidden Epidemic. If they are "warning" you, you can warn them that you are notifying their licensing boards that they are not aware of Celiac disease or Gluten Intolerance.

[frieze]

I would not accept treatment from such incompetent physicians. File a complaint on the nutritionist. Surely they have licensing boards for nutritionists. I would be furious. I would file a complaint on the Dr. too. They all need a copy of Celiac, The Hidden Epidemic. If they are "warning" you, you can warn them that you are notifying their licensing boards that they are not aware of Celiac disease or Gluten Intolerance.

HOWEVER, if you are going to file complaints, do it WITHOUT telling them you are going to....otherwise you run the risk of them reporting you for neglect/abuse to protect their license!

[salexander421]

My daughter ended up in the hospital ER due to a stomach virus and dehydration (very common) which had gotten really bad. While there, they take the history, etc. Wouldn't have mentioned the gluten thing, except I didnt want them giving her any meds with gluten in it (not that they would know if it had it anyway I guess). In any case, some smart-ass nutrtionist comes in, and then turns around and turns the doctors against us, telling the doctors that "Hundreds of people are on this gluten-free diet thing, when they dont need to be, and it's a fad, and its really dangerous, and these people are putting this child on a starvation diet and she's going to die, you can't get enough nutrition on a diet like this." She even had the gall to falsify my child's medical record (they started doing an intake/output (food/liquid) chart to see what she was holding down) so it looks like, yes, it is impossible to get the required food! We are trying to get that corrected to. I am planning on getting a lawyer if she doesn't voluntarily change them because you know what this turns into - "starvation diet"..... Now the "parents" are crazy and horrible, not wanting to feed their child. Call Social Services. She already threatened us with that. Can you imagine? I can't believe that some UNEDUCATED dippy little nutritionist is threatening me with Social Services because of a gluten issue.

It was just a horrible chain of events, and the "nutrtionist" was the only one who made all the doctors upset about it, because they rely on her infomation (since they know nothing about nutrition). OH well. Glad at least people on this board understand more than the average Joe out there. It makes me feel a little more normal.

I'm so sorry you are going through this! It's so sad to me when professionals threaten to take children away from parents who clearly are doing what's in the best interest of their children, and then you have children who are in the worst environment and they say they can't do anything about it...there is something SERIOUSLY wrong with our system! We were on WIC recently and stupid me told the lady we were gluten and dairy free and that did not go over well at all! She thoroughly questioned me and tried to make food suggestions that weren't even as nutritious as the foods we were already eating...like rice cakes are more nutritious than homemade bread made from sorghum, almond, and millet flour!? And suggesting rice milk instead of the very nutritious hemp milk my girl drinks just because she didn't know what it was. She called my children "high risk" and that was the last time I was seen in that office. A little help with the cost of food is not worth having the government in my business in my opinion! Anyways, enough about me

You may just have to jump through their hoops...if your kids are gluten free and healthy from it there's no reason the doctors need to know they're gluten free...just say "We've added some gluten back and they seem to be doing ok." and leave it at that. Doctor's, in my opinion, are not meant for parenting and nutrition advice. They're meant for when we get sick and need their medicine. It looks like, unless you switch doctors which apparently isn't an option, you're not going to get a diagnosis. I would just leave the doctors out of the equation and continue doing what's best for your children. You are in my prayers!!!