Took My Daughter To The Dr. Today

[Kris Fisher]

I was diagnosed with celiac disease by blood in April of this year. I immediatley went gluten free. Still didn't feel the best so I recently went dairy free aswell. Last week was the best week I had in a while.

Anyway, I took my 6 year old Daughter in to be tested as she has similar stomach issues as I do. The Gastroentologist and I began discussing why I brought her in. I say I was recently diagnosed with celiac disease. He asked by what means, I tell him by blood. He said I'm not 100% diangosed! He says the only way to prove celiac disease is thru the scope. He said I need to go back to normal eating for 2 months and then be scoped. I'm so frustrated today I can't take it . I'm so mad at my family Dr who didn't follow thru and have me scoped 3 months ago. I feel he wasted 3 months of my life. NOW I have to go off of my gluten/diary free diet and be in pain for a 100% dianosis. Has anyone had to do this because of the Family Dr.'s incompetance?

Kris

[Tangerine]

This might sound harsh... but screw your gastro doctor. I would just stay gluten and dairy free. It takes a while to feel better, you might even have other food alleries/intolerances that you are not aware of.

[Kris Fisher]

I would prefer to stay gluten free but I have to do this for my Daughter. The Gastro didn't say this but I felt he didn't take her symptoms as celiac because I'm not 100% diagnosed. If I can prove I have it then I can rub it in his face. I can take the symptoms of celiac disease for my Daughter any day.

Kris

[Guest nini]

You do not require your Dr.s permission to be gluten free. You DO have a positive dx, one based on positive blood work AND positive dietary response. Seriously, SCREW that Dr... You also do not need to do that to your daughter either. You have the power to test her yourself with diet PERIOD... the blood tests and biopsies are ONLY conclusive if they come up positive. If they are negative that doesn't mean anything, as they can only rule it in, never ever rule it out, and any Dr. that tells you otherwise is operating on OUTDATED information. The old way of doing it was the gold standard of the biopsy. This is NOT the way of the future. Positive dietary response is THE MOST VALID diagnostic tool and Dr.s don't like to tell you this because they make absolutely ZERO money off it.

I had positive blood work and positive dietary response. My GI told me that I did not need the biopsy because the blood test confirmed it. Also, my dietary response was incredible. My daughter does not have an official dx of Celiac despite her first three years of life having classic Celiac symptoms. Her ped. GI also refused to take me seriously since I hadn't had a biopsy, and told me "oh she just has IBS, feed her MORE whole wheat" jerk... he could've killed her. I went back to her pediatrician and told her I was not satisfied with his assesment and I wanted to try her on the diet. Miracle of miracles, she responded IMMEDIATELY. My daughter is OBVIOUSLY Celiac, AND allergic to wheat, and she won't touch the stuff. Her pediatrician said, well "we KNOW it's Celiac, but we'll just put Gluten Intolerance in her chart so that she doesn't have issues with health insurance down the road"

I feel so very strongly about this subject because of what the medical community tried to put me through with my daughter, but I trust my GI... A Nationally renown Celiac expert spoke at one of our support groups recently and she completely concurred with what MY GI had said.

The biopsy is quickly becoming outdated as the gold standard. Blood tests are becoming much more accurate and sensitive, and the experts are starting to realize that positive dietary response is the most valid way to diagnose this condition.

[Tangerine]

I don't see why your doctor is making you do this so he can diagnose your daughter. that just seems backwards! Can he not give her an endoscopy!? Basiclly... he wants to make you sicker and make her wait to get better! I would tell your doctor to test her anyways! He can at least test her blood. Get a doctor that will listen, or bluntly state that you want your daughter tested.

I have had... lets see... 4 different doctors question my diagnosis. One thought celiac was in the colon near the rectum. He got mad at me when I told him he was mistaken, and basicly said I didn't know more about it than he did!!! And the others questioned it because they were 'old school' and would only accept a biopsie too, even though I had three blood tests that were all VERY positive.

[ravenwoodglass]

I was diagnosed with celiac disease by blood in April of this year. I immediatley went gluten free. Still didn't feel the best so I recently went dairy free aswell. Last week was the best week I had in a while.

Anyway, I took my 6 year old Daughter in to be tested as she has similar stomach issues as I do. The Gastroentologist and I began discussing why I brought her in. I say I was recently diagnosed with celiac disease. He asked by what means, I tell him by blood. He said I'm not 100% diangosed! He says the only way to prove celiac disease is thru the scope. He said I need to go back to normal eating for 2 months and then be scoped. I'm so frustrated today I can't take it . I'm so mad at my family Dr who didn't follow thru and have me scoped 3 months ago. I feel he wasted 3 months of my life. NOW I have to go off of my gluten/diary free diet and be in pain for a 100% dianosis. Has anyone had to do this because of the Family Dr.'s incompetance?

Kris

No you don't. Tell this guy to take a leap. You know you have a positive response to the diet and you need to stay with it. Don't let some doctor tell you to poison yourself for his satisfaction. I would also put your DD on the diet for a while, or do the Enterolab tests. I did a challenge after being gluten-free and became more sick than I had ever been in my life. Complete with bleeding intestines. IMHO I would walk out the door on any doctor that suggested it and not look back.

[Guest nini]

oh, and the family Dr. WASN'T incompetent... for what it's worth.

[tarnalberry]

the old school philosophy is that you have to have a biopsy for a diagnosis. that is slowly going out of favor, and many doctors these days will rely upon the more recent, and more accurate, blood tests and dietary response for diagnosis. quite frankly, I agree with them.

[Lymetoo]

Hey, I'm new to this and I agree.....screw the dr! He does not rule your life!! After years of illness I got that message!!!!

Your health is more important than pleasing a stupid dr!

Oh....and I failed the biopsy test 26 yrs ago. I made the stupid mistake of believing that test result!!

[Kris Fisher]

I asked the Dr why I felt better when on the diet he said he has given patients sugar pills before and they respond with feeling better. Basically it was all in their heads and basically all in my head!

[Fiddle-Faddle]

I asked the Dr why I felt better when on the diet he said he has given patients sugar pills before and they respond with feeling better. Basically it was all in their heads and basically all in my head!

As soon as I saw that Nini had answered your post, I figured I wouldn't have to, as her answers are always brilliant.

But then I saw your last post.

Okay, we need a Smilie with steam coming out of its ears!!!!!!!!!!! doesn't say it all.

YOUR DOCTOR SUCKS. FIND ANOTHER ONE.

(Sorry if that sounds harsh. )

[Tangerine]

Go to a new doctor pronto!!! That is unacceptable for him to be treating you that way!

[skbird]

OMG, you were BLESSED to have a family doctor accurately diagnose you based on blood tests! So many people have had the opposite experience.

Definitely, I vote for finding another gastro. Or have your family doctor order the blood tests for your daughter! He's a keeper!

Stephanie

[ianm]

If you feel better on the gluten free diet what more do you need to know? There is no pill for celiac.

[CarlaB]

I went back on gluten for six weeks for the endoscopy, but it still came out negative because I was not on it long enough and wasn't eating enough gluten. I've been gluten free for 6 months, and casein free for 3 weeks. I have good days and bad days, but am getting consistently better. I finally gave up on doctors, went to Enterolab, which you do not need to do because you have a positive blood test, and got a diagnosis. My doc accepted Enterolab and said he was going to use it in the future because he thought traditional testing required you to be half-dead before it would catch celiac. I also had my daughter tested by Enterolab. Like someone else mentioned, you can go gluten-free without a doctor's supervision, and the lack of diagnosis makes it so that there is no pre-existing condition. I technically am diagnosed with gluten-intolerance.

I wouldn't do it. The endoscopy still could come out negative. I personally don't like doctors who think they know everything.

[Guest Robbin]

I went back on gluten for six weeks for the endoscopy, but it still came out negative because I was not on it long enough and wasn't eating enough gluten. I've been gluten free for 6 months, and casein free for 3 weeks. I have good days and bad days, but am getting consistently better. I finally gave up on doctors, went to Enterolab, which you do not need to do because you have a positive blood test, and got a diagnosis. My doc accepted Enterolab and said he was going to use it in the future because he thought traditional testing required you to be half-dead before it would catch celiac. I also had my daughter tested by Enterolab. Like someone else mentioned, you can go gluten-free without a doctor's supervision, and the lack of diagnosis makes it so that there is no pre-existing condition. I technically am diagnosed with gluten-intolerance.

I wouldn't do it. The endoscopy still could come out negative. I personally don't like doctors who think they know everything.

I WHOLEHEARTEDLY agree, Carla. This is just one more egotistical jerk. It is YOUR body, YOUR daughter. Do not let SOME JERK tell you that you don't know your own body. It is ignorance and arrogance from drs. like him that caused so many of us on here to have long-term illnesses and needless suffering. Do not let him make you doubt yourself and make you feel small. You are his boss. FIRE HIS SORRY BUTT.

[4getgluten]

After going gluten-free, I tried to go back to my normal diet so my doctor could test me for Celiac. I couldn't do it. I tried for about 4 days and then gave up. I didn't want to feel that sick again. I decided that a positive dietary response was enough for me. I'm definitely gluten intolerant. I'll never know for sure if I have Celiac, and that's okay with me. I agree with everyone who has posted already. Don't go back to that gastro. You already have a positive diagnosis. It's not all in your head. Take your daughter to the family doctor who diagnosed you w/ the blood test, or find another gasto.

[eKatherine]

When it comes to this disease, doctors forget that the oath they took says, "First, do no harm."

[Fiddle-Faddle]

When it comes to this disease, doctors forget that the oath they took says, "First, do no harm."

ABSOLUTELY!! An endoscopy is an invasive procedure, and it does carry some risks (wait til you see all the waivers they'll have you sign stating that you have been advised of the risks--which you get to do 10 minutes before the procedure)!!!

Just because the doctor doesn't GET IT that making the antibodies is the first stage of celiac doesn't mean that you should let him poke around your intestines to satisfy his ignorant curiosity. And if he doesn't happen to biopsy a place that shows damage, then he hasn't proved that there is NO damage yet, you'll never know if he just missed or not. And after going on a gluten-free diet, the damage should subside anyway.

Honestly, can you think of even one reason to return to this doctor?

[Guest nini]

oh this Dr. sounds like a real jerk... egomaniac!!! Fire his butt and go back to the family Dr. if you want your daughter tested, but otherwise, just put her on the diet and see what happens... trust me, you DO NOT want a positive dx on her permanent record... she will possibly be denied insurance (yes it happened to me)... instead, you can get her healthy off gluten and no one else has to be the wiser. You do not need a Dr. note for school, just a mommy note, and if you want a Dr. note, once she has shown improvement on the gluten-free diet (which she will) get your nice family Dr. to write a note stating she is gluten intolerant and needs to be on a strict gluten free diet. That is all we have for my daughter for school and it works.

there is no downside healthwise to being gluten-free... no negative effects on the body as long as you are getting a balanced diet of foods that are naturally gluten-free... so, knowing this, and knowing that YOU do have a positive dx and the likelihood that your daughter has it is very high especially if she has symptooms, why wait another day to have her go gluten-free, you stay gluten-free, have fun doing it together (my daughter and I do... we make it an adventure to find what yummy treats we can find) and just get on with the business of being healthy and not putting any more money in ignorant Dr.s pockets...

Remember that Dr.s work for YOU, not the other way around... you can fire the ones you don't like and I'd fire this one in a heartbeat.

[wolfie]

I have to agree with everyone here. Get a new dr or go back to your family dr. Even if you do go back to eating gluten for 2 months or longer, there is no guarantee that your biopsy will be positive and if it is negative, that won't rule Celiac out b/c the damage can be patchy or the lab may not be one that specializes in looking for Celiac.

I didn't have the scope either and only had positive bloodwork and a very positive dietary response. My kid's Ped wanted me to have the scope and positive biopsy before he tested them, but after 6 months of me on his case, he did test DS, who came back with a highly positive bloodtest. He will have the scope only b/c he has not gone gluten-free yet.

[Kris Fisher]

I really appreciate ALL the help you all have given me. I knew you guys would understand and have the best advice out there.

I will take you advice and stay gluten free and have my Daughter tested by my Family Dr. I have now changed the way I feel about my Family Dr vs. the gastro Dr. Thank you for helping me realize that.

I didn't know a test could come back negative and still not mean I don't have Celiac. I wish I had all this yesterday when talking to the gastro. When I mentioned to the gastro that the diet made me feel better I wish I would have said there are no pills for celiacs only the diet and I'm responding positively.

You guys are great

[Ursa Major]

Hi Kris, I have just read through this thread and don't really need to add much. Just wanted to say that you will save yourself from developing other autoimmune diseases and possibly cancer down the road by being gluten free. And of course, the same goes for your daughter.

I am very glad you will stick with your family doctor and stay gluten-free, instead of listening to that ignorant, rude GI doctor. He doesn't know what he is talking about and thinks he is God. Who needs doctors like that!!!!!!!

[AndreaB]

Kris,

I agree with everyone else. Who needs the added stress to the body by going back on or remaining on gluten. I went to a holistic doctor for allergy tests and then went through enterolab after that. My regular doctor was willing to do a blood test based on a few past experiences but I had nothing consistant and don't believe I would have shown positive on the blood test. I had been gluten free except for rice dream milk and an occassional oatmeal for 1 1/2 months when I talked to her. The enterolab tests came back as positive intolerance for 3 out of 4 of us. I did email the results to my doctor buy haven't heard what she thought of them. No one in the family had obvious symptoms but my oldest son already had mild malabsorption. If I had not pursued the allergy testing (because of my infant son's eczema) we would have been none the wiser and still consuming tons of gluten. Who knows how long it would have taken to show classic symptoms and have major damage done. The enterolab was something we pursued on our own and I'm glad I had the family tested. It doesn't sound like you need to do enterolab if your doctor accepts blood tests. If the blood tests come back inconclusive for some reason you could always have the enterolab test if you want, but go gluten free no matter what.

[eKatherine]

From info I have read I believe they did 3 biopsies to diagnose at that time...

I read this, too. What it took for a positive diagnosis was to have a positive biopsy, then go gluten-free for 6 months and get a negative biopsy, then eat gluten for 6 months and show another positive biopsy.