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Yet Another Doctor's Opinion


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122 replies to this topic

#61 Gemini

 
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Posted 29 December 2011 - 11:46 AM

Of course parents "shouldn't" feel guilty over things like this, having done our best at the time. That doesn't stop it from happening to some of us, though. Hindsight is 20/20 and every now and then I can't help from looking back and seeing all the signs and opportunities I missed.



This is true for most Celiacs. When I look back in hindsight, like you stated, I can't believe it took me so long to figure it out and ask for the right testing. The fact that the medical profession missed it, when I am a classic, textbook Celiac, is beyond comprehension. I looked like I was suffering from malnutrition and yet the doctors told me I was "lucky" for having a great metabolism and I would not have to worry about becoming overweight. :blink: It still makes me shake my head in disbelief.

Good luck with the gluten challenge....it's a good thing I had positive testing because no way would I eat gluten again for tests.
I can understand why you are, though. I hope you get some answers.
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#62 IrishHeart

 
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Posted 29 December 2011 - 03:30 PM

I didn't say anything to J as I watched her have severe stomach aches, grumpiness and tantrums. I was hoping she would come to the conclusion herself. Well she did. By 6pm she was super tired and felt horrible. She said "I am mad for no reason, I am tired and I have a horrible stomach ache and sharp pains in my stomach and I think it is the gluten". It was amazing. My hubs said he thinks I am on to something! hahaha yup.

:D


well, I am not one to say "I told you so" (don't you hate when people say that!!--me too! :lol: )

but I believe I told you yesterday in a PM that she should go ahead and eat all that gluten, feel sh--ty --- and she would make the connection in her own head and say:

Mom, It's the gluten!! :(

Hallelujiah!!

Now, what was that comment from the doctor about "Moms vs. the doctors who

are right 99% of the time!???"" hahahahahaha

The gluten "test" you just ran is better than any other test in the world.

Happy for you, Kiddo!!---you got her--and your husband--to see the light. :)

Cheers, IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#63 researchmomma

 
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Posted 29 December 2011 - 04:22 PM

well, I am not one to say "I told you so" (don't you hate when people say that!!--me too! :lol: )

but I believe I told you yesterday in a PM that she should go ahead and eat all that gluten, feel sh--ty --- and she would make the connection in her own head and say:

Mom, It's the gluten!! :(

Hallelujiah!!

Now, what was that comment from the doctor about "Moms vs. the doctors who

are right 99% of the time!???"" hahahahahaha

The gluten "test" you just ran is better than any other test in the world.

Happy for you, Kiddo!!---you got her--and your husband--to see the light. :)

Cheers, IH


I know! You did tell me that and so much more. Sure is nice to see it so quickly and significantly.

We ordered the gene test (all HLA DQs not just the 2 and 8 that Prometheus gave us) and the antibody stuff too since her IgA was too low to be run properly. I think something will show up as gluten sensitive.

However, my J is stubborn like her Mom so she is holding her breath for the endoscopy. The endocrinologist did not hear back from the GI (shocking) so I think after a few more days of glutening herself she will give up and be back to gluten-free. I have a hard time standing her with all this gluten in her system.

I am pretty convinced that she doesn't have Celiac since she doesn't have the DQ 2 or 8 so I think the endoscopy is a serious waste of time and money but if she wants it and they will actually give it to her, so be it.
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#64 IrishHeart

 
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Posted 29 December 2011 - 04:33 PM

We ordered the gene test (all HLA DQs not just the 2 and 8 that Prometheus gave us) and the antibody stuff too since her IgA was too low to be run properly. I think something will show up as gluten sensitive.

However, my J is stubborn like her Mom so she is holding her breath for the endoscopy. The endocrinologist did not hear back from the GI (shocking) so I think after a few more days of glutening herself she will give up and be back to gluten-free. I have a hard time standing her with all this gluten in her system.

I am pretty convinced that she doesn't have Celiac since she doesn't have the DQ 2 or 8 so I think the endoscopy is a serious waste of time and money but if she wants it and they will actually give it to her, so be it.


See what happens from here. I am so glad that in essence, you DO have an answer and in a few days, she may just stop the gluten herself. ;)

You have done a marvelous job here, Momma!!!--and I think you owe yourself a day at a spa.

IMHO ;)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#65 researchmomma

 
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Posted 29 December 2011 - 04:43 PM

See what happens from here. I am so glad that in essence, you DO have an answer and in a few days, she may just stop the gluten herself. ;)

You have done a marvelous job here, Momma!!!--and I think you owe yourself a day at a spa.

IMHO ;)


IH: Yes, I do need a spa day. I can't wait to get her back to eating gluten-free.

Hubs and I both felt that J would want the lab test showing that she is gluten sensitive so we ordered it. Now if it comes back that she has no sensitivity I am not sure what the heck I will tell her, lol. Knowing my luck, this will be the case.

Regardless she needs to be gluten-free.

So the other positive is that I finally convinced by BFF that she needs to be tested for Celiac. Her grandmother had it and she exhibits plenty of symptoms so she started with the blood work and we should hear back soon. She is a newbie and was floored that I have a separate butter dish and toaster. She thought that was a bit over the top. She is in for a ride! :rolleyes:
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#66 IrishHeart

 
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Posted 30 December 2011 - 07:32 AM

So the other positive is that I finally convinced by BFF that she needs to be tested for Celiac. Her grandmother had it and she exhibits plenty of symptoms so she started with the blood work and we should hear back soon. She is a newbie and was floored that I have a separate butter dish and toaster. She thought that was a bit over the top. She is in for a ride! :rolleyes:



uh-oh, now you are becoming like me...my Native American name would be "She who sees celiacs everywhere"..... ;)

and separate mayo, peanut butter, jam, mustard and anything else some WE (wheat eater) dips a knife into !!!

This is why hubs just went gluten-free WITH me after my DX (of his onw accord, I did not ask!)---one butter, PB, jelly and mayo---so much easier. ;)

From what you have revealed about your son and hub and the family history, I foresee a total gluten-free revolution down the road.... :lol: :lol: :lol:

Go get a massage, mamma--you EARNED it!!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#67 researchmomma

 
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Posted 30 December 2011 - 09:20 AM

It is true that you start wondering about people who have all kinds of things going on and they couldn't figure out why they are sick.

To avoid CC, we use squeeze bottles for everything we can. However, I do believe at some point I might be able to get my husband to try gluten free to see if he can get off his meds. Just a two month little test.....wish me luck. My son would benefit as well but I need to go in baby steps with this folks!

So IH and all, I have one more question. My GI clearly is antagonistic and isn't supporting a GFD to see if we can get rid of some of her symptoms without drugs. So I am thinking that I would like to have J followed by a doctor outside our city (all here in our city are tied to our GI who is a Celiac and gluten intolerant specialist). I would like to find a doctor that doesn't blow off people who don't have Celiac and can accept that maybe she has Non-Celiac Gluten Intolerance.

Do you think I can find a doctor with an open minded approach or should I stay where I am and just hope that when we go back to our current GI, she is doing better and she agrees with my approach?

I would love to find someone that is up to date on gluten intolerance/sensitivity not related to Celiac. Or do you think I am wasting my time? It would be a 90 minute drive each way to go see someone else.

Thoughts please.
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#68 domesticactivist

 
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Posted 30 December 2011 - 09:24 AM

Advocating for our kids can turn us into evangelists. I'm glad your friend is getting tested! I see celiacs everywhere, too - or at "least" gluten intolerance.

As for the doctors missing thing - it upsets me so much that people can be alarmingly skinny and told they are lucky, especially when they feel sick! It's so common and so wrong!
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#69 IrishHeart

 
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Posted 30 December 2011 - 09:39 AM

How about if you ask under the DOCTOR section on the forum? Entitle it Looking for Good Celiac GI in the ______ area?

That's how I found my New WONDERFUL GI doc
:) :)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#70 IrishHeart

 
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Posted 30 December 2011 - 09:50 AM

As for the doctors missing thing - it upsets me so much that people can be alarmingly skinny and told they are lucky, especially when they feel sick! It's so common and so wrong!


Or my (former) GI's NP who wrote "aneroxic" on my report in 2009 as I withered away?

I was a robust 215 all those years I went to that office (1998-2008) and was told I had "GERD" and "IBS" :rolleyes: and when I lost 90 lbs, my hair, muscle mass and I was in agonizing pain, she told me to take anti-depressants, acid reflux medicine and that it could not possibly be celiac because I was overweight. She snapped "you can eat gluten!" Your blood work was Negative. That my pain was "fibromyalgia" <_< and I should take drugs--those antidepressants are "good drugs" for that, she said.
The GI doc she works under scoped me back in '09, but failed to biopsy for some reason I still do not know--and I became more and more ill for nearly 2 more years. Until I figured it out.

I threw the scripts in the wastebasket and never looked back.

My new GI has not said it, but he implies this is malpractice. Ya think??!!

Yes, I wrote her --and that doctor---an irate letter after my DX--but as I suspected, I did not hear from them.

See why people like Gemini, Ravenwoodglass and I do not trust the AMA anymore??? We would have died (or be in a mental health ward) if we had not persevered. Instead, we have chronic pain and other AI diseases as a result of remaining undiagnosed.

Just plain wrong.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#71 researchmomma

 
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Posted 30 December 2011 - 09:55 AM

How about if you ask under the DOCTOR section on the forum? Entitle it Looking for Good Celiac GI in the ______ area?

That's how I found my New WONDERFUL GI doc
:) :)


I am so glad you found a good doc. That is huge.

I am hoping to find a doctor who understands the realities of Non-Celiac Gluten Intolerance. Our current GIs thinking is if you aren't Celiac, you can eat gluten. That isn't helping me!

Or maybe I just let this play out and see how it goes. J is still on gluten and fighting and bickering with everyone. She refuses to go gluten-free until she finds out if the GI will scope her.

Maybe I should see if I can get in soon with a doc in another county and maybe they would just scope her if we went in and "started over". I just don't like the treatment we are getting here from the GI Celiac Specialist.
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#72 researchmomma

 
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Posted 30 December 2011 - 10:02 AM

Or my (former) GI's NP who wrote "aneroxic" on my report in 2009 as I withered away?

I was a robust 215 all those years I went to that office (1998-2008) and was told I had "GERD" and "IBS" :rolleyes: and when I lost 90 lbs, my hair, muscle mass and I was in agonizing pain, she told me to take anti-depressants, acid reflux medicine and that it could not possibly be celiac because I was overweight. She snapped "you can eat gluten!" Your blood work was Negative. That my pain was "fibromyalgia" <_< and I should take drugs--those antidepressants are "good drugs" for that, she said.
The GI doc she works under scoped me back in '09, but failed to biopsy for some reason I still do not know--and I became more and more ill for nearly 2 more years. Until I figured it out.

I threw the scripts in the wastebasket and never looked back.

My new GI has not said it, but he implies this is malpractice. Ya think??!!

Yes, I wrote her --and that doctor---an irate letter after my DX--but as I suspected, I did not hear from them.

See why people like Gemini, Ravenwoodglass and I do not trust the AMA anymore??? We would have died (or be in a mental health ward) if we had not persevered. Instead, we have chronic pain and other AI diseases as a result of remaining undiagnosed.

Just plain wrong.


This is horrible and the path that my daughter was clearly on. Sad that you had to Dx yourself. That is what the endocrinilogist accused me of on Tuesday. She accused me of standing in the way of my daughter's health. Are you freakin' kidding me? I am her ONLY advocate. Not my husband, not her pediatrician, not the ER docs, no one but me. I am the only one looking at the whole child/medical history. WTF?

I keep thinking if I found a doctor that would listen to me, I could find someone that would accept GFD for a 6 month trial and let's see how she is doing then. But no, I am inhibiting her growth by denying her prilosec. An Adult dose of prilosec for 12 months. She weighs 70 lbs and we are going to give her an adult dose of prilosec for 12 months, really??? Add in Prozac too. GREAT.

I just want to scream....

My guess is that I will have her off the seizure meds in 6 months (the neuro can't figure out why she has seizures and but has an normal EEG between seizures and her seizures only happen yearly, probably when the gluten load is too much).

But what do I know? I am just layperson who runs clinical trials around the globe and my neurophysiology degree means nothing as well. The internet just pisses these docs off because we come in with a potential diagnosis and if we are right we negate their reason for being.

Rant over. Thanks for listening. :P
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#73 IrishHeart

 
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Posted 30 December 2011 - 10:17 AM

Or maybe I just let this play out and see how it goes. J is still on gluten and fighting and bickering with everyone. She refuses to go gluten-free until she finds out if the GI will scope her.



ok, Let me get this straight.

She sees the direct correlation of gluten to her feeling so bad.

yet

she is demanding a scope??

what is it exactly that she WANTS??

a diagnosis of celiac?

and if that does not come??

have you explained there is such a thing as NCGI to her and it causes ALL THESE SYMPTOMS TOO--EVEN seizures?

so, She will not go gluten-free and she will be miserable

for the rest of her life??

She risks more health issues down the road, even infertility? (I could never carry to term and lost 5...)

You do have a real problem here.

J is "in charge" and you are frantically searching for a GI who will do the scope. I hope you can find someone and fast.

Sorry, Momma. :( I had hoped she would have been happy just feeling better.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#74 researchmomma

 
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Posted 30 December 2011 - 10:38 AM

ok, Let me get this straight.

She sees the direct correlation of gluten to her feeling so bad.

yet

she is demanding a scope??

what is it exactly that she WANTS??

a diagnosis of celiac?

and if that does not come??

have you explained there is such a thing as NCGI to her and it causes ALL THESE SYMPTOMS TOO--EVEN seizures?

so, She will not go gluten-free and she will be miserable

for the rest of her life??

She risks more health issues down the road, even infertility? (I could never carry to term and lost 5...)

You do have a real problem here.

J is "in charge" and you are frantically searching for a GI who will do the scope. I hope you can find someone and fast.

Sorry, Momma. :( I had hoped she would have been happy just feeling better.


Well not exactly. She is staying glutened until they tell her scope or no scope. If they say no, she goes gluten-free. If they tell her yes to the scope, she will go gluten-free after the scope.

She knows she needs to be gluten-free.

I did let her decide if she wanted to be scoped or not. I told her that they would probably find nothing which is why I ordered the enterolabs so maybe (maybe maybe) she would have some type of gluten sensitive gene show up.

So no she isn't in charge but she wants the scope to also rule out haital hernia which is what her dad has.

For her sake, I hope we can hear one way or the other regarding scoping her.

I want a different doctor that understands that there is a real syndrome of NCGI so we can be followed and understood. Not to scope her, although I toyed with the idea of going in "blind" and saying here are her symptoms. But I think being honest is better. Anyway, I just want someone who is open minded to NCGI or gluten sensitivity instead of having to battle my decision to have her go gluten-free. Someone gets it.

Make sense? If not, let me know. I am open!
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#75 researchmomma

 
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Posted 30 December 2011 - 10:46 AM

Well not exactly. She is staying glutened until they tell her scope or no scope. If they say no, she goes gluten-free. If they tell her yes to the scope, she will go gluten-free after the scope.

She knows she needs to be gluten-free.

I did let her decide if she wanted to be scoped or not. I told her that they would probably find nothing which is why I ordered the enterolabs so maybe (maybe maybe) she would have some type of gluten sensitive gene show up.

So no she isn't in charge but she wants the scope to also rule out haital hernia which is what her dad has.

For her sake, I hope we can hear one way or the other regarding scoping her.

I want a different doctor that understands that there is a real syndrome of NCGI so we can be followed and understood. Not to scope her, although I toyed with the idea of going in "blind" and saying here are her symptoms. But I think being honest is better. Anyway, I just want someone who is open minded to NCGI or gluten sensitivity instead of having to battle my decision to have her go gluten-free. Someone gets it.

Make sense? If not, let me know. I am open!

Just to be clear, the endocrinologist wants her scoped in hopes that they will find a histological reason to put her on prilosec, not to check for celiac (odds very very low since she doesn't have the gene, as you know). However, the endo did say, she will biopsy because it is standard protocol to do so during an endoscopy here at Children's. So I don't really give a rats a$$ about the scope because even if there is inflamed esophagus or stomach lining, I am not putting her on prilosec until we have been gluten-free for 6 months or so.

Anyway, that is the history. Hubs thinks we should do the scope just to rule out the hernia which could contribute to her issues.

Does all this make any sense?
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