Dr Said Not To Eliminate Gluten

[kayc]

I am writing on behalf of my sister of which has a 7 year old with celiac disease diagnosed about 2 years. The pediatric gastroenterologist my niece has been seeing told my sister not to completely cut out gluten from her diet because she has a mild form and it will only worsen her condition. I am a nursing student and a little more outspoken than my sister without any medical background and refute that statement. I have searched every professional journal article I could find, along with NIH and the American Gastroenterology Association and NO WHERE does it say NOT to cut out gluten because she has a mild form. She has been suffering from abdominal distention, lack of hunger, bowel obstruction, constipation, diarrhea, vomiting but my sister will not listen to me when I say she needs a second opinion, that there is no research that I have found to support her doctors statement. Any suggestions? Comments?

[Jestgar]

Tell your sister to fire this jackass doctor who is telling her to deliberately harm her child.

[kayc]

I agree and I have been trying.... I have printed out some articles from EBSCOhost from professional journals to show her. I think she has issues standing up to a doctor let alone a specialist who is suppose to be "all knowing" but he is obviously a quack job. Her and I get into fights about it because she wont stand up to the doctor or her uneducated, ignorant husband that is only concerned about his daughter being able to eat "normal" highly processed and fatty foods because they are certainly serving his obese self well... not

[frieze]

This would seem to be malpractice, would you consider reporting him to the medical board?

[chasbari]

This would seem to be malpractice, would you consider reporting him to the medical board?

I second this notion. I think it is time, in light of the knowledge we do have by now, that horrible misinformation of this nature needs to be addressed vigorously. Maybe if one doctor is made an example of and the facts are able to be set straight, others might eventually get the message. ... well. I can always have big dreams, can't I?

CS

[chasbari]

I'm actually upset enough about this that I would do something radical like go press attempted murder charges and take it to court. I know, I know, just a ridiculous notion but..... Level heads should and will prevail. I hope you are able to make your sister and her husband understand the seriousness of this. The child is so vulnerable in this case and will suffer for a lifetime if not taken care of properly. Gee... maybe I am wishing I had someone who understood this/recognized this when I was a child... there I go.. projecting.. sorry.

[Salax]

My doc told me the same thing (go gluten free lite) because one of the antibodies was positive and the other negative and the third was out of range. I basically told him you need to read on the subject, because there is no gluten free lite diet for a positive blood test. Luckly people on this forum backed up my claim.

I'm sorry but I think doctors want to "fix" people with a prescription and when something like Celiac Disease pops up they don't know how to handle it. They don't know much about it and you can't fix it with a pill. So they pull random information out of their you know whats...

Fire the doctor, look into getting one that actually might know about this disease. I know it's like finding a pot of gold at the end of a rainbow...but it would be worth it for her health.

[IrishHeart]

I am sick to read this. I too, wish I had someone recognize this in me as a child. It would have spared me a lifetime of illness, crippling pain, and things like miscarriages...This thing is not something to mess with.

There is NO SUCH THING AS "MILD CELIAC"--what the hell??

This is child endangerment. This poor kid---if she is still sick, HOW is this a good thing??

This doctor is grossly misinformed about the treatment of celiac. How can this guy be in practice??They need a second opinion and FAST!

The old thought was that children would "Outgrow" it---ha! There are thousands of people on here with multiple autoimmune illnesses and chronic pain as a result of that ignorance.

Surely she wouldn't object to a 2nd opinion.

Does she GET what will happen to this child if she continues to eat gluten???

I would scare her! tell her about diabetes, cancer, burning neuropathic pain, ataxia, depression...these are all down the road for this child....can you try and explain what AUTOIMMUNE diseases are to her and her idiot husband??.

Gluten is like poison to a celiac. Does a little bit of poison sound okay??

The ONLY treatment for celiac is LIFE LONG AVOIDANCE OF GLUTEN.

Celiac is an inherited disease. One of her parents must be sick??....you say BIL is obese? Your sister is "timid"....these are clues......

You have my sympathy because it must be so difficult to watch this happening...

I would bombard this guy's office with CURRENT information on celiac. He's from the stone age. He should be sued for malpractice. This is a disgrace!!

OMG I am so upset about this I could scream....

[GlutenFreeManna]

Have you actually spoken with her doctor to know what his/her medical advice was (I mean is this the same dr you go to or used to go to)? The reason I ask is, it's possible she is just lying to you about saying "my dr says it's mild..." because SHE doesn't want to change her child's diet. I have heard a lot of bad advice from doctors over the years and I don't doubt some are grossly misinformed but I also tend to think that a mother that is truly concerned about her child would see what was going on through 5 years of seeing her child being sick and get a second opinion. The problem here is not only a bad doctor but it also MUST be parents that haven't bothered to educate themselves about the disease their child has. You need to stop looking for articles that back up the dr's advice and start looking for things that back up the advice everyone here knows to be true: a strict gltuen free diet with NO EXCEPTIONS is in order. Also show them the articles describing the additional illnesses that can develop if celiacs are not strictly gluten free--cancer, diabetes, hashimotos, RA, infertility, etc. If they don't listen to that seriously consider calling CPS on them for medical endangerment of a child.

[Takala]

Is there any way to confirm this was, in fact, the doctor's advice ? If so, he needs to be turned into some sort of medical governing authority. Have you called his office and made an appointment to speak to him to see exactly what his advice actually is ? (excuse could be you have to babysit a celiac child and want to do what's right, etc)

But what about "Mom?" was my thought, also. Is she library, bookstore, and internet literate ? Is she doing this to get attention, the wrong kind (oh, look, my child is sick again) or is this a sort of cry for help ?

She doesn't want to stand up to her husband ? Ugh, that's a nice "issue."

If the sister is not listening to you, when everything I have ever read from professional medical sources re celiac on the internet, etc, say it needs to be a complete elimination of gluten, and the poor kid is still having symptoms, I would contact your local Social Services and ask them for advice on how to proceed on a medical intervention. BUT, I would contact the Doctor in Question, first. You may also want to contact a lawyer for advice, because this situation is going to be tricky, with the patient confidentiality issue, and people tend to believe the mother at first. "Per my doctor's orders" carries a lot of weight.

Check also the "rate my doctor" type sites, maybe there is more stuff on the web about him.

Or, you can take the softer approach, and ask her just why is it she really is not keeping the kid on a real gluten free diet. Husband sabotaging ? Too expensive ? Can't handle the cross contamination issue in a mixed house ? Hates being different ? Hates cooking ?

The child inherited this genetic tendency from at least one and maybe both parents, so maybe the fear is that she's also needing a gluten free diet for herself and is in complete denial. Has she been tested ?

[ravenwoodglass]

Have you actually spoken with her doctor to know what his/her medical advice was (I mean is this the same dr you go to or used to go to)? The reason I ask is, it's possible she is just lying to you about saying "my dr says it's mild..." because SHE doesn't want to change her child's diet. I have heard a lot of bad advice from doctors over the years and I don't doubt some are grossly misinformed but I also tend to think that a mother that is truly concerned about her child would see what was going on through 5 years of seeing her child being sick and get a second opinion. The problem here is not only a bad doctor but it also MUST be parents that haven't bothered to educate themselves about the disease their child has. You need to stop looking for articles that back up the dr's advice and start looking for things that back up the advice everyone here knows to be true: a strict gltuen free diet with NO EXCEPTIONS is in order. Also show them the articles describing the additional illnesses that can develop if celiacs are not strictly gluten free--cancer, diabetes, hashimotos, RA, infertility, etc. If they don't listen to that seriously consider calling CPS on them for medical endangerment of a child.

This is what I was wondering also. There is also the possiblity that she is celiac herself and is in denial about how strict she needs to be. If her husband is abusive and refuses to cooperate she may also be trying to protect him. The child does come first though, always.

[Judy3]

If a person is Diabetic they can't take 'a little bit of insulin'... This outrages me. I wish someone would have taken the time to notice my issues when I was 6 yrs old because a life time of this was not fun. Any doctor that would say something like that should have his MD taken away. If we can research the disease for ourselves then a gastro doctor should be able to learn about something that affects his patients. My gastro doctor showed up at my dietician appt so that he 'could learn' how to instruct his other patients with diabetes and celiac. Too bad not all doctors are like this guy, although it took him two years to figure it out which seems insane but at least he eventually did.

Poor kid I can relate.. I was sick all my life and was told "get over it you don't have a fever". I discussed that with my mother this weekend, not to upset her but just to see why and she just cringed and got all embarrassed. I asked her why she was embarrassed and she said "Judy, I'm a registered nurse and I ignored you for so many years. I'm sorry". I told her she didn't ignore me for all those years I just stopped telling her I was sick so I didn't get the 'look' again. She cried when I told her how I felt every day from 6 -53. We know more now than we did back then and I didn't want to make my mother feel bad but a little part of me (the 6 yr old) was happy to hear her I'm sorry...

[Financialman]

I can believe this story because my gastroenterologist didn't have a clue about Celiac disease and really discovered it by accident. In follow up conversations I new more then he did. This seems to be the norm. Medical schools do not give much credence to many of the autoimmune diseases that seem to be so common like Celiac disease: 1 person out of 133 sounds like an epidemic to me.

[IrishHeart]

This is what I was thinking when I posted earlier....and had some time to think on it....because I was so pissed off about this situation and needed to cool off.

The doctor will likely refuse to talk with you as he cannot divulge information, so you can't get him to tell you what the parents' instructions were. So, you may never know the truth about that.

Maybe...the only hope you have is to show your sister what we wrote...??

This child is suffering needlessly...and your sister is too unwilling to make the necessary changes to save her child's life.

I know another person like this...her son has food intolerances for sure and that poor kid is up half the night with anxiety and bed wetting and she won't do a thing about it. That's just wrong.

Honey, you may be the only person who can save this child's life. Unless you can get other family members to support you when you speak with her again?...please, Do not give up!!

[frieze]

Can you invite yourself along on the next doctor visit? If your sister refuses, you may have a good part of your answer.....and if she does, you can ask the questions you need answers to.

[shopgirl]

She needs a new doctor. Period. If he can't get this right, what else could he get wrong? There are good doctors out there...as elusive as they may be.

[MsCurious]

An innocent child is sick and can't defend herself in a world filled with ignorant, and selfish adults! That makes me upset and very sad for the child. Don't give up! It sounds like you're the only one looking out for her!

Maybe your sister doesn't want to be bothered with a special diet. Maybe her husband has convinced her that its no big deal, but they BOTH are responsible for that child's well being and IMHO could be reported for child neglect if they refuse to meet her medical needs.

I think the other poster had a good idea... can you go along to her next appointment? If so, go in "armed" ...have solid research information with you from places like Columbia University Celiac Center, and the one in Maryland, and University of Chicago Celiac Center, and Mayo Clinic in Rochester, MN. There's TONS of research studies, guidelines, etc you could take with you, from proper serology cascades, appropriate treatment -Glute Free Diet, and studies that suggest even a pinhead of cross contamination can put a celiac into a tailspin and undo months of healing.

Make it happen! You're her only hope, and you'd never forgive yourself if you didn't try to help her.

Oh, and as for having a mild form of celiac... That would be like saying "I'm just a little tiny bit pregnant... it doesn't really count" ... or "Don't worry about that guy over there... he's just a little bit dead" Pretty ridiculous!

[mushroom]

Can you invite yourself along on the next doctor visit? If your sister refuses, you may have a good part of your answer.....and if she does, you can ask the questions you need answers to.

I think this is the best response I have read yet. Somebody else really needs to hear it out of the doctor's mouth - you can't condemn the guy on hearsay evidence. If your sister won't let you come you can pretty well guarantee that you are not hearing the whole correct story.

[Tyson Holly MD]

I'm so sad reading this. First of all, I'm new to the forums. But they may have saved my life. I am a doctor of emergency medicine at a well known "research" hospital. I just spent over a month in the hospital with every type of horrific test you can imagine. I was getting so much worse in the hospital that my Fiancee and I were forced to do our own research and diagnoses. I'm so sad to say I almost died bc of the doctors', including three different GI docs, absolute lack of knowledge about this disease. I cannot understand why it's so hidden from the world when it's more common than HIV, breast cancer and skin cancer put together. It makes no sense. You HAVE to find an MD who knows about this and specializes in it. The others know nothing and most aren't willing to do a little research to learn.

[crimbles]

I know when I got tested, I was pretty sure I had Celiac's, but the doctor told me not to cut back until I was sure. But here is the thing, processed grains have only been a part of our diets for the last 10,000 years, a second in evolutionary terms. I do not see the point on continuing to eat something that makes you sick. being gluten free is not that hard!

[kayc]

Thanks everyone for your comments and advice. I am definitely going to take everything into thought about my approach to this situation. I will keep you posted. Keep the comments coming.

[Liveenjoylife]

Doctor sounds like he has noooo idea what he is talking about. Keep trying to convince your sister that he is WRONG. It is only going to hurt your niece if she continues to eat wheat.

[kareng]

First, get more info. See if you can get her permission to talk with the doctor if you don't live close enough to go to an appointment.

Unfortunately, if this turns out to be a mom & dad who will not look at the easy to understand info, you may have to take more drastic steps. Their refusal to read the info you have provided and get another opinion, could be child neglect if not abuse at some point. You may want to explain that to her and hub. If this was a diabetic child they were not trying their best to treat, the child would be taken away. Is your mom able to help? Maybe your sis would listen to her?

Or the other grandma? Maybe a grandparent would pay for the second opinion if that is an issue? My parents would if it was their grandchild.

If there is a Children's hospital near by, you might talk with the Social Services and the Legal counsel ( usually on staff).

[MsCurious]

I'm so sad reading this. First of all, I'm new to the forums. But they may have saved my life. I am a doctor of emergency medicine at a well known "research" hospital. I just spent over a month in the hospital with every type of horrific test you can imagine. I was getting so much worse in the hospital that my Fiancee and I were forced to do our own research and diagnoses. I'm so sad to say I almost died bc of the doctors', including three different GI docs, absolute lack of knowledge about this disease. I cannot understand why it's so hidden from the world when it's more common than HIV, breast cancer and skin cancer put together. It makes no sense. You HAVE to find an MD who knows about this and specializes in it. The others know nothing and most aren't willing to do a little research to learn.

Welcome, Doctor... and I hope you're feeling much better! First...thanks for joining our discussion and telling us you're a doctor. Quick question for you... Do you have any suggestions for how we can get our "uninformed" doctors to read up, or learn or take us seriously? It seems many of them are insulted, or just make people feel like they're crazy rather than doing the job they are paid to do. What would be the best approach? Any thoughts?

[Tyson Holly MD]

Welcome, Doctor... and I hope you're feeling much better! First...thanks for joining our discussion and telling us you're a doctor. Quick question for you... Do you have any suggestions for how we can get our "uninformed" doctors to read up, or learn or take us seriously? It seems many of them are insulted, or just make people feel like they're crazy rather than doing the job they are paid to do. What would be the best approach? Any thoughts?

Thanks for the warm welcome! I'm honored to be a part of such a smart, well informed, caring community and I know we can make this a well known disease!

This is a tough question, and one that I'm currently grappling with. In the hospital, J ( my amazing fianc