Yet Another Doctor's Opinion

[mushroom]

Well, it certainly makes sense to me that you would like some medical backup, somone in whom you have confidence, to handle J's care. It can be a lonely path to follow if you are the only one on it, as you are findding out. My personal feeling is that you are more likely to find an open mind with a non-specialist (now this is just my own personal feeling and take it for what it's worth). It seems that the specialists are too much hung up in what they KNOW - it being their specialty after all - and too unwilling to admit that there are things they do not know and explore other ideas (unless you are lucky enough to find a specialist who can think 'outside the box').

Follow up and see if you can get the scope - and make sure she really tests for celiac (like at least 6-8 biopsies instead of the 1 or 2 that so many do) because the damage is often patchy and sometimes it is luck to find it because it has to be looked at under the microscope (some of them believe you should be able to see it with the naked eye, but then why would you need to put it under the scope?) If the scope is only being done as a justification for Prilosec you have to make sure they do the proper testing for celiac too

Assuming you can get the scope, then you can look for a non-specialist celiac literate doctor who believes in NCGI to treat J in the future. Someone who is understanding and caring and will treat the patient and not the symptoms. If you can find this person it doesn't matter if their specialty is family practice, GI, pediatrics, or just being a good doctor. Have you tried checking with your nearest celiac society for such a person (I know, they will probably recommend the Children's Hospital ) but you could request a family practitioner.

I say this because my current GP is wonderful. I have never been tested, hubs tests just over the negative mark but developed DH when he cheated ) We have been on a journey together for the last three years - hubs and I both go to her - and she loves it when I take her in articles to read and says she has learned so much, tests for celiac much more often now, orders any tests I ask for based on what documentation I give her and just is a "let's give this a go" sort of person. Her ego does not get in the way of our care, which is what I think you are running into.

[IrishHeart]

and she loves it when I take her in articles to read and says she has learned so much, tests for celiac much more often now, orders any tests I ask for based on what documentation I give her and just is a "let's give this a go" sort of person. Her ego does not get in the way of our care, which is what I think you are running into.

Yes, this is exactly what this poor Momma has run into!

And yes, thankfully now I too, have a GI who is celiac-savvy and who believes in NCGI and who loves it when I bring him articles and he thinks this "thing" is bigger than any of his colleagues believe. He puts his ego aside to talk with me and I have never met a doctor like him!

Her story is longer than this one thread reveals (and she has told me most of it via PMs) and she has struggled mightily to get her daughter the help she deserves.

She does need to find someone --anyone--to help her, but her hands are tied because of the area she lives in--the docs all "know each other".

She's having a bugger of a time.

I wish we could do more to help.

[IrishHeart]

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.

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

Yes, hon, it makes sense in a way--- except you are all going to be suffering while you find someone wiling to do this scope.

Why does she think there is a hiatal hernia? You have not mentioned this previously . Does she have HH symptoms??

[domesticactivist]

Here's my 2 cents:

I would also want to do the scope I'd be hoping it's celiac and also because there could be things besides celiac or non-celiac sensitivity going on that need to be treated.

I'd also start shopping for a new doctor. You don't feel respected by this one and you need someone who will take you and your daughter seriously.

However it generally takes longer to get a new patient appointment and get tests ordered and carried out by someone new, so I'd continue trying to get the testing done through the doctors you currently are working with, and find someone else for the long term.

I can relate to your daughter staying on gluten now - I'm making the same choice for myself. My partner doesn't understand that it's not about looking for a way OUT of the gluten-free diet, it's more a hunger for as much information, as accurately as possible she's suffering already and it's not much longer, might as well get some data out of it.

I'd be one squeaky wheel of a mama right now, to get that scope scheduled.

[ravenwoodglass]

One thing that needs to be kept in mind is the high false negative rate for blood and biopsies. Someone can still be celiac and have negatives for both. Someone can also be celiac without one of those 2 most common celiac associated genes. I am sorry RM that you are having so much trouble with the doctors. They almost killed me because I am a sero-negative celiac and when my blood tests came back a false negative they refused to even scope. I was literally almost dead by the time I was diagnosed and it took years to recover and left me with some permanent brain and nerve damage. My DD was diagnosed with positive blood and biopsy and then because she doesn't have the genes her 'diagnosis' was taken away. No explination for the positive blood and biopsy just 'you can't be celiac you don't have the genes'. In the end we need to pay the most attention to our response to the diet and the reoccurance of symptoms when we get glutened.

[IrishHeart]

I was literally almost dead by the time I was diagnosed and it took years to recover ..... In the end we need to pay the most attention to our response to the diet and the reoccurance of symptoms when we get glutened.

Ditto for me .....and yes indeed.

That's the only treatment anyway, whether it is celiac or NCGI.

[researchmomma]

Well first off, thanks to all of you for listening to me ramble. I come here and spill all the thoughts that are flowing through my brain. If did this with my friends (more than I already do) they would think I was nuts. They have all been wonderful though in making sure J has gluten free foods or snacks when she is with them. They have watched her suffer over the years and are eager to help.

Mushroom and IH: really really great point on finding someone who is not a specialist. I will also consider what Domestic said about sticking with whom we have because maybe I can bring her some articles on NCGI and she will get it. I don't know. However, I may consider seeking a scope from a new doctor if our current declines. Maybe I should just make an appt now in case, I can always cancel it. I am thinking this because once she goes back on gluten, we aren't going back off. Look at the difference only two weeks made and going back is hard on her. She is being positive about it but I can tell she doesn't feel as well. Her eyes look different to me (puffy and darker circles than a week ago).

So if we are going to do any more testing regarding this, it best be now!

Raven: I have also heard of the positive biopsy (DH) and blood work but told not Celiac because of no genes. That is INSANE. That is wrong on so many levels. The literature supports that the two main genes cover 90-98% of all celiacs depending on what you are reading.

IH thanks for having my back on all of this. It has been really frustrating but I am lucky since it is early in her life, although I do think she has had some significant effects from gluten already.

Thanks all!

[researchmomma]

Yes, hon, it makes sense in a way--- except you are all going to be suffering while you find someone wiling to do this scope.

Why does she think there is a hiatal hernia? You have not mentioned this previously . Does she have HH symptoms??

Her Dad has it. She also asked me what they would be looking for in a scope if not for Celiac. I mentioned hernias and erosion. She also is worried that there might be something more scary wrong with her so she would like the scope for those reasons.

She is a smart girl and she knows it is best to get this out of the way now. She liked how she felt gluten-free so she doesn't want to have to do a 3 month challenge later. And she wants to feel validated or have medical support I think. I get that. I do think as she gets older she will realize it all doesn't matter, gluten makes her sick so she won't have it.

[IrishHeart]

And she wants to feel validated or have medical support I think.

I completely understand that validation aspect. I wanted that myself--so that all of this nightmare I suffered would somehow make sense to me.

I kept saying "there has to be a reason for why things have gone so wrong" in my body. I just would not give up.

Glad we could help--if for nothing else than just listening.

Keep us posted.

[mushroom]

Re hiatal hernia, I believe it is possible to have this and still have celiac-related GERD which can improve gluten-free. My sister-in-denial uses her hiatal hernia as one of her reasons to deny that gluten is a problem for her.

[ravenwoodglass]

Re hiatal hernia, I believe it is possible to have this and still have celiac-related GERD which can improve gluten-free. My sister-in-denial uses her hiatal hernia as one of her reasons to deny that gluten is a problem for her.

I have one and it gives me no issues whatsoever. I don't know if any of the many GI related issues were from that before I went gluten free though. It was found when my new GI did my over 50 colonscopy and decided he should look at whether my villi we completely healed (they were).

Hopefully your SID will see the light soon.

[researchmomma]

My sister-in-denial

LOVE THAT: SID

[IrishHeart]

LOVE THAT: SID

I have one of those as well. Type 1 diabetes, hypothyroid, and so much more--- and ME with a DX!!!...but nope, she is not going to be tested. No way. I have begged but now, I have to back off so she does not get mad at me. I love my big sister.

Makes me sad. But we are all adults and make decisions we have to live with.

That's why J is lucky to have a Mom who cares so very much!!

[researchmomma]

I have one of those as well. Type 1 diabetes, hypothyroid, and so much more--- and ME with a DX!!!...but nope, she is not going to be tested. No way. I have begged but now, I have to back off so she does not get mad at me. I love my big sister.

Makes me sad. But we are all adults and make decisions we have to live with.

That's why J is lucky to have a Mom who cares so very much!!

Thanks for the nice comment! Now I need to stop focusing on all of this so I can focus on work. I am obsessed but I know I will be fine once she is back on the GFD and feeling better. Whatever the outcome. I just read the article by Dr. Fasano on Gluten Intolerance and how everyone is coming out of the woodwork to say they have it so the GIs are . I think my GI doesn't believe in it.

[researchmomma]

This is on Dr. Fasano's website. interesting.

What is the meaning of HLA DQ2/DQ8?

As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don

[ravenwoodglass]

This is on Dr. Fasano's website. interesting.

What is the meaning of HLA DQ2/DQ8?

As an autoimmune disease, celiac disease is the consequence of the interplay between genes and the environment (gluten). We don

[mushroom]

I believe Dr. Fasano is referring to other genes in addition to HLA DQ2 and DQ8 which are necessary to develop celiac disease, since we all know he is a firm believer in those two being necessary for whatever reason.

[researchmomma]

I believe Dr. Fasano is referring to other genes in addition to HLA DQ2 and DQ8 which are necessary to develop celiac disease, since we all know he is a firm believer in those two being necessary for whatever reason.

I was a bit shocked when I read his statement. I am new to this as you know, but I am a scientist and that is a BOLD statement. My GI follows his advice I guess because in her mind you cannot have Celiac if you don't have the two genes. In addition, i don't think she believes in NCGI (I will be discussing this with her in Feb).

I just read another article which quoted him and it said 99% of Celiacs have one or both of the genes. This is the problem!!! Mixed messages.

[Darn210]

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.

For what it's worth . . . we drive 2 hours to see a pediatric GI because the local one is an a$$ who tells me things couldn't happen that I saw with my own eyes (a gluten reaction within an hour of eating). You see, Celiacs don't react that quickly . . . it couldn't have been gluten. He's not the doc that initially diagnosed her so he's not actually convinced she's a Celiac even though she had a very positive blood test.

I can't see anyone else in that office unless I get his permission (office policy). The saving grace is that we have loads of friends in the town we travel to (we used to live there) and we are on a yearly follow-up schedule at this point anyway. The bad news? . . . the doc we see now interned under the a$$ . . . apparently everyone in a two hundred mile radius has as the guy is older than dirt. The new doc knows that I don't have anything good to say about the former doc and does not appear to hold it against me.

You never know where you are going to find a doc that understands so keep feeling around. My son's asthma doc thinks we(society) have only seen the tip of the ice berg when it comes to gluten issues.

[pricklypear1971]

If you want someone to help her get her body working right you need a good ND, not an MD.

An ND will advocate for stopping any food that makes her feel bad, to heal her gut, etc.

Not all ND's are created equal, like MD's...so look for a good one.

[IrishHeart]

I was a bit shocked when I read his statement. I am new to this as you know, but I am a scientist and that is a BOLD statement. My GI follows his advice I guess because in her mind you cannot have Celiac if you don't have the two genes. In addition, i don't think she believes in NCGI (I will be discussing this with her in Feb).

I just read another article which quoted him and it said 99% of Celiacs have one or both of the genes. This is the problem!!! Mixed messages.

These are the two genes that PREVAILING science/medical researchers believe are the "main celiac" genes.

ETA: that are associated with celiac.

Are there more at play?

Yes, so it would seem!!!

The jury is still out. Look at Ravenwoodglass' genetic test result.

Dr. Fasano is not ruling anything out. He is one guy who is still looking for answers and he is the one who wrote the latest article that states unequivocally that NCGI and gluten sensitivity is for REAL.

He also wrote the article back in 1996 saying this disease is grossly under-diagnosed, particularly in this country.

Until more research is done, we cannot know ALL the genes involved.

But the doctors come out of med school thinking celiac disease is a wasting disease of childhood and that it is "rare"--and until that myth is dispelled, the medical community at large will continue to think the same way.

[IrishHeart]

If you want someone to help her get her body working right you need a good ND, not an MD.

An ND will advocate for stopping any food that makes her feel bad, to heal her gut, etc.

Not all ND's are created equal, like MD's...so look for a good one.

The only problem is Mom and daughter both (and her husband as well) want a diagnosis via biopsy and no ND is qualified to do this procedure.

[pricklypear1971]

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.

I suggest an ND. See my other post above.

[domesticactivist]

The only problem is Mom and daughter both (and her husband as well) want a diagnosis via biopsy and no ND is qualified to do this procedure.

They could get the biopsy through the old doc and find an ND for long term or complimentary care. My dr actually even has an ND! If that isn't Portland, for you, I don't know what is.

[IrishHeart]

... an a$$ who tells me things couldn't happen that I saw with my own eyes (a gluten reaction within an hour of eating). You see, Celiacs don't react that quickly . . . it couldn't have been gluten.

You never know where you are going to find a doc that understands so keep feeling around. My son's asthma doc thinks we(society) have only seen the tip of the ice berg when it comes to gluten issues.

In the 3 years I searched for an answer to my rapidly declining health and excruciating pain, I saw dozens of doctors, specialists in 3 different states/(dentists even--for the jaw, skull and facial pain I also developed)/allergists/NDs & various alternative care types who said something like this: (with condescension and skepticism)

"In my ___ years of practice, I have never seen a patient with these symptoms. You just need to relax and take this.... (starts opening script pad up)

To me, this was an implication that it was either all in my head or I was making it up! How do you "make up" a 90 lb. weight loss, hair loss, and complete loss of muscle mass, ataxia, or the 3 dozen+ other symptoms? )

I would answer with: "Well, I am your FIRST then." And I would leave the office in tears because I knew I would get no help from that person.

Thankfully, the new GI doctor I found--thanks to another member on c.com --said "OMG! I have never seen celiac manifest in a patient the way it has in you. " (He said this while choking up because he felt terrible for how long it took for me to have my DX confirmed) This was accomplished simply by going back to my PC doctor after 3 years of hell and TELLING him--"Look, this is what I have!" He finally realized what had been staring him in the face for 3 years. This is a man, BTW, who has children with Celiac! He says (with regret) he did not know how it presented in adults. Really??!! This is the same man who DXed me with B-12 deficiency, folate deficiency and watched me drop all that weight but thought it "was good for me" ( as I was so darn fat, I guess???)

My DX is based on my slow recovery from the waking dead through gluten-free dietary compliance and double DQ2 genes--as my blood panel was NEG and the Idiot GI I had before him failed to biopsy when he did the endoscopy. (we still do not know why and the doctor won't answer my letters or calls)

This new GI doc refuses to have me go back on gluten for that--which is good because there is no way in hell I am putting that poison in me so I can lose brain function again. He called what happened to me "a disgrace." He does want to biopsy me at some point to be sure the villi are healing. I said that would be okay--but only because I trust him.

He also thinks celiac is the most underdiagnosed health epidemic we are facing. He also used the "tip of the iceberg" phrase. He loves when I bring him articles to read--he is not threatened or offended by it ---and he makes copies for his patients. He has asked me to speak to celiac support groups with him so others can see these symptoms are "not all in their heads". He said my story affected him deeply and that my whole health history should have been a giant neon sign saying "CELIAC". He says I saved my own life and my recovery will take a long time--but it will happen (well, we are not sure about the neurological burning pain, but we remain positive ). He also says doctors need to look at the whole patient, figure out the cause of the problem, not just symptom-treat. I love this guy!!

He's a real "keeper".

These are the doctors we NEED! Ones with brains. Ones who read a CURRENT medical journal every once and awhile. Ones who LISTEN to the patient and look at the WHOLE health history.

Just my 2 pennies.