Yet Another Doctor's Opinion

[researchmomma]

Quick background: took my 12 yo to the GI at end of November. Because her blood work for the celiac panel was inconclusive she opted for the gene test which only tested DQ 2 and 8 presence. It was negative so ruled out Celiac and stated that without those genes Celiac wasn't possible. We know from this forum that is not always the case. The GI stated that she needed to be on a high dose of Prilosec for 1 year (40 mg) to see if this was the issue. This, in my opinion, is like a band-aid for bigger issues.

Anyway, because she had a low IgF-1 level (abnormal) we were instructed to see a endocrinologist. We went today and she looked at all of her symptoms and asked: has she been screened for Celiac? Before I could answer she said "oh the blood work is negative". You mean inconclusive (the IgA level was 34 and normal is 67-XXX)? I told her that because she was gene negative the GI didn't do a biopsy or scope. She said OK, end of story on that. Then it got interesting. She asked me if she was taking the prilosec and I told her no. She asked why we went gluten free and I handed her the list of symptoms again. I let her know we had been gluten-free for two weeks and during the last week were are seeing some minor improvements. I told her I was sick of band-aids and seeing every kind of "ologist" known to man. She was upset with me. She is friends with our GI, lucky me. And she asked me why I was in her clinic. Again, I told her that our pediatrician sent us because of her low IgF-1 and she said even though it is abnormal, it is fine. I told her she should educate the pediatrician on what that test means and I got up to leave. I AM FRUSTRATED. can you tell? She tells us to hang on because my daughter is clearly small and underweight.

So we do the bone age test so she can track her. My almost 13 year old comes back as age 11 bone structure. She tells me if we look at her like an 11 year old she is doing quite well and that she is probably just a late bloomer. What an interesting approach. Let's just consider her 11! However, she really believes her issue is GI related. She writes the GI an email while I am there and politely asks her for a scope for ulcers because I am reluctant to put her on prilosec without a proven histology. She tells me that I may be hindering her growth by not giving her the prilosec. GUILT. GREAT.

She said I am over the top with all of my daughter's symptoms and she thinks that getting the scope to prove she has an ulcer, or esophageal erosion or whatever will convince me that she needs the prilosec. Don't they get it? My daughter has been going through this for 6 years. Some months/weeks she eats like a pig and the next month she has horrible stomach/bowel pain and can't eat. It isn't all the time. UGH

I tell her about my SIL and her gluten sensitivity and how gluten-free diet resolved her GERD and she glazes over.

So I am stunting my child's growth with a gluten-free diet and omission of a doctor's prescription.

AND I may get the biopsy I wanted but now I am sure that it will be a normal biopsy and I will look more insane.

This endocrinologist stated that every once in awhile a Mom is right but usually the doctors are right (99% of the time).

So if the GI grants the endoscopy, I need to put her back on gluten. I guess I will wait to see if she grants it because the GI thinks I am a certifiable WACKADOO and will probably tell the endocrinologist that she needs to be on prilosec and I need Prozac.

And I am pissed off that I am considered a WACKADOO because I did something non-invasive and non-prescription to help my daughter.

Funny thing is, I am not sure I want that biopsy now. I am scared that it will be normal. How sick is THAT?

I just re-read this post and I am a WACKADOO.

[ravenwoodglass]

You're not wacko you are a loving and caring mother who is desperately searching for the answer for your childs problems. Words can not express how angry I am at the way you are being treated. IMHO it may be worthless to have that doctor even do the endo since he has already decided she can't possibly be celiac he may not even look for it.

You have some hard decisions to make. You can either put her back on gluten to prepare for the endo with your current doctor. You can look for new doctors while keeping her on gluten. Or you can keep her gluten free for a couple of months and see if she improves. Her being gluten free will not affect the results of testing for anything else that may be going on.

[researchmomma]

You're not wacko you are a loving and caring mother who is desperately searching for the answer for your childs problems. Words can not express how angry I am at the way you are being treated. IMHO it may be worthless to have that doctor even do the endo since he has already decided she can't possibly be celiac he may not even look for it.

You have some hard decisions to make. You can either put her back on gluten to prepare for the endo with your current doctor. You can look for new doctors while keeping her on gluten. Or you can keep her gluten free for a couple of months and see if she improves. Her being gluten free will not affect the results of testing for anything else that may be going on.

I was just talking to my daughter about the appointment and she said "Mom, that endocrinologists thinks I should be scoped because she said "Why don't we get her scoped for reflux or ulcers; and the standard is to biopsy". So I am not sure if she was placating me and trying to get her on Prilosec or if she believes a scope would be useful.

Prilosec isn't going to address her growth issues (or asthma, eczema, fractures, irritability, constipation, chronic bowel pain, etc). She does think it will get her to eat so she can grow.

UGH, I don't know what to do.

Feb 9th is the follow up with the GI. If the GI calls, I am considering telling the her that we will see her then after being gluten-free for a few months and then we can decide if the prilosec is necessary. I think you are right that she will not look for Celiac during a scope.

Or I could bag on all of this and go to another GI but they are all related through Children's.

Oh this is nuts. I think I need to let this go for awhile and start fresh tomorrow.

[IrishHeart]

This endocrinologist stated that every once in awhile a Mom is right but usually the doctors are right (99% of the time).

I just re-read this post and I am a WACKADOO.

Sweetie,

I have told you already, but I will say it again--you are NOT a whackadoodle. You're a Mom fighting for her daughter.

OMG--where do I start with this Endo?

First of all, RAVEN said exactly what I would have said, and she's a Mom, too so her perspective is even better on this subject than mine---but I wish to add:

This condescending attitude is not only insulting, it is laughable.

The wildly erroneous assumption--that doctors are RIGHT 99% of the time ?? Here is my response to that:

:lol: :lol: :lol: :lol: :lol:

ALL of the doctors I saw for YEARS got it WRONG!!

What BS!! This doctor is playing the "party line"--The "all my colleagues are right and I'm not going to be the one to refute what was said to you."

Do what you think is best. But if J's symptoms get unbearable while she's doing the gluten challenge....you have your answer.

Make sure this GI does the BIOPSY CORRECTLY after all this. There needs to be 8-11 samples taken from various spots.

If it's negative, it does NOT mean there isn't a gluten issue.

This endo is way out of line making you feel guilty because you would rather find the CAUSE of her symptoms rather than have her on drugs.

Try the prilosec, for 14 days, if you wish. Maybe it will help.

But she wants her taking it for a year? It's supposed to be used for 14 days, with a 4 -month break. And here is the best part--she hasn't even scoped her YET ---so she does not even know if there are ulcers or esophageal erosion??

yet, she's suggesting a YEAR of this drug?

From Pub MEd Health:

People who take proton pump inhibitors such as omeprazole may be more likely to fracture their wrists, hips, or spine than people who do not take one of these medications. The risk is highest in people who take high doses of one of these medications or take them for one year or longer.

Some people who take omeprazole for a long time may develop weakening of the stomach lining."

[Booghead]

I am 17 and if I was checked for the bone thing I would probably come back as 11 years old too. My 8 year old cousin is the same height as me, no big deal being short isn't the end of the world.

My father is on Prilosec, it works for him. He gets sick when he misses a day, if he eats anything acidic he must have the prilosec. I can't tell you if this is a bandaid for my dad or your daughter.

I think you should have the scope, it will help you and if she does have ulcers or something then she does need prilosec. That doesn't mean she isn't celiac and it doesn't mean she isn't gluten intolerant, it means she has acid reflux. It is painful and terrible and if you are willing to get her gluten free to see if she feels better, why aren't you willing to give her prilosec to see if she feels better?

She could have all the above problems because of celiac. She could have all the above problems because of acid reflux.

Acid reflux is because you aren't digesting correctly, which would mean that she wouldn't be getting all the necessary vitamins and minerals for her growth or bone density.

I don't want to upset you or anyone else, but I read this in one of my celiacs books:

Once you have celiac disease, or know someone that has celiac disease it is nearly impossible to not diagnose everyone with it as well.

I am just trying to get you to look at all the sides and angles to this. To help your thinking and processing, I also want to state that I have yet to meet a decent "ologist" to help me. My GI's were incompetent and uninformed and I will never go back there. I will be seeing an allergist and a endocrinoligist at the beginning of the year, but I am only going to see them through a referall from my family doctor.

BTW my father is very worried about fractures because prilosec patients with never ending use, often need hip replacements or knee replacements. It isn't too good for bones, but might help her absorb more nutrients if acid reflux is the case.

[researchmomma]

Sweetie,

I have told you already, but I will say it again--you are NOT a whackadoodle. You're a Mom fighting for her daughter.

OMG--where do I start with this Endo?

First of all, RAVEN said exactly what I would have said, and she's a Mom, too so her perspective is even better on this subject than mine---but I wish to add:

This condescending attitude is not only insulting, it is laughable.

The wildly erroneous assumption of the rate at which doctors are right? here is my response;

:lol: :lol: :lol: :lol: :lol:

ALL of the doctors I saw for YEARS got it WRONG!!

What BS!! This doctor is playing the "party line"--The "all my colleagues are right and I'm not going to be the one to refute what was said to you."

Do what you think is best. But if J's symptoms get unbearable while she's doing the gluten challenge....you have your answer.

Make sure this GI does the BIOPSY CORRECTLY after all this. There needs to be 8-11 samples taken from various spots.

If it's negative, it does NOT mean there isn't a gluten issue.

As far as I know, there is NO scientific evidence that absence of gluten in a healthy diet stunts a child's growth or affects her health! What a bunch of crap. J's growth was delayed LONG before you started a gluten-free diet just a few weeks ago. This endo is way out of line making you feel guilty because you would rather find the CAUSE of her symptoms rather than have her on drugs.

Try the prilosec, if you wish. But she wants her taking it for a year? It's supposed to be used for 14 days, with a 4 -month break. And here is the best part--she hasn't even scoped her YET ---so she does not even know if there are ulcers or esophageal erosion??

yet, she's suggesting a YEAR of this drug?

From Pub MEd Health:

People who take proton pump inhibitors such as omeprazole may be more likely to fracture their wrists, hips, or spine than people who do not take one of these medications. The risk is highest in people who take high doses of one of these medications or take them for one year or longer.

Some people who take omeprazole for a long time may develop weakening of the stomach lining."

Yes it is disgusting that I let these doctors rattle me. On the flip side I am happy to know that that lab result isn't important and that she is probably a late bloomer.

Thanks for the reassurance that I am not a nutter. I know I come on here for constant reassurance but all of this information is just so overwhelming. I just need help figuring it all out.

I agree that a year of this drug is out of line. Thanks for looking that up for me. Regarding a scope, I will only do it if we are going to make it worth it and she agrees to do biopsies. Who knows what she will say to that. I also have to get J back on gluten and I am not looking forward to the miserable days ahead.

Booghead My daughter's aunt, unlce and father all take Prilosec like candy. However, her Aunt was diagnosed as gluten sensitive and went gluten-free. Poof, GERD disappeared. So I thought before we result to yet ANOTHER drug, why not go gluten-free for 3 months and see if it helps. If it does, great. She has so many other gluten related issues, I felt that it was a good course. I was hoping to go to the GI with a list of symptoms that had resolved or were improved off gluten. That's why. We have been battling this for 6 years, what is 3 more months? Also, her symptoms aren't really GERD. She seems to be battling an inflammatory response (swollen lymph nodes around appendix and constipation, among other things).

[domesticactivist]

I'm sorry for the misery you and your daughter have been put through with these doctors. I can relate to the feelings of just wanting to know what's going on and wanting to go with natural, non-invasive treatments rather than bandaid medicines she has to take every day.

I do hope you go ahead with the endoscopy and biopsy if she's still on gluten. Remember that if she's been gluten-free or gluten-light you can not get a valid celiac (blood or biopsy) test, though! They're saying 20 grams of gluten (not just gluten-containing food) a day for three months is what it takes. I'm currently doing this myself after a year gluten-free and it is not fun! It probably makes sense to do the scope looking for other problems even if you can't get valid celiac tests out of it.

That said, there are many other ways to be affected by gluten. It is very possible that gluten causes your daughter serious problems without causing the typical celiac damage. Have you read "Healthier Without Wheat"? I think it does a good job of hammering on that point

My daughter is 12 and a half and has the bone age of a 9 year old. This is considered a GOOD thing by the endocrinologist, as it means she has "room to grow." There is such a thing as a "constitutional" growth delay, where the child's timing for growth and puberty is not the norm. My daughter is tiny - if you look at her on the 9 year old growth chart she's way down at the bottom of the range. She's never made it onto the growth chart for her own age. She doesn't have digestive issues, but has Tourette's syndrome, ADD, and anxiety issues. She was also an intensely picky eater.

When we discovered gluten was the source of her brother's problems I had my hopes up that we'd figured it out. We had her keep eating gluten (but maybe not quite enough), and got blood work done. It all came back negative and her genes were negative as well. We also had her tested for Open Original Shared Link which was negative. Your daughter should be screened for this even if she doesn't have the typical appearance. There is a mosaic form of this disease that is harder to test for and we did not test for that.

Since our whole family was going gluten-free because of cross-contamination issues, she went gluten-free, too. Then our whole family went on the GAPS diet as well (back in February). I have seen some major changes in her - her ADD is pretty much gone, not much anxiety any more, and now she LOVES to eat. I think the diet has been good for her, but she still has Tourette's and she still is tiny.

At her 6 month appointment had barely grown (her younger brother had gained something like 3-4 inches in that time and is taller than she is!) We're going back to the endocrinologist next month and they're going to check her hormone levels, vitamin levels, and probably other things, too. She has recently outgrown clothes so I'm very curious to see how it all stacks up.

They seem to want to give her growth hormones which I am very cautious about. The idea is that once puberty comes on girls don't grow much more, so she needs to get her growth in now. I was a "late bloomer" and her bone age is low so hopefully she has more time. Height predictors put her at 4'7"! It's ok to be short, but they still want you in a booster seat at 4'6" so we're hoping those charts are wrong.

[researchmomma]

I'm sorry for the misery you and your daughter have been put through with these doctors. I can relate to the feelings of just wanting to know what's going on and wanting to go with natural, non-invasive treatments rather than bandaid medicines she has to take every day.

I do hope you go ahead with the endoscopy and biopsy if she's still on gluten. Remember that if she's been gluten-free or gluten-light you can not get a valid celiac (blood or biopsy) test, though! They're saying 20 grams of gluten (not just gluten-containing food) a day for three months is what it takes. I'm currently doing this myself after a year gluten-free and it is not fun! It probably makes sense to do the scope looking for other problems even if you can't get valid celiac tests out of it.

That said, there are many other ways to be affected by gluten. It is very possible that gluten causes your daughter serious problems without causing the typical celiac damage. Have you read "Healthier Without Wheat"? I think it does a good job of hammering on that point

My daughter is 12 and a half and has the bone age of a 9 year old. This is considered a GOOD thing by the endocrinologist, as it means she has "room to grow." There is such a thing as a "constitutional" growth delay, where the child's timing for growth and puberty is not the norm. My daughter is tiny - if you look at her on the 9 year old growth chart she's way down at the bottom of the range. She's never made it onto the growth chart for her own age. She doesn't have digestive issues, but has Tourette's syndrome, ADD, and anxiety issues. She was also an intensely picky eater.

When we discovered gluten was the source of her brother's problems I had my hopes up that we'd figured it out. We had her keep eating gluten (but maybe not quite enough), and got blood work done. It all came back negative and her genes were negative as well. We also had her tested for Open Original Shared Link which was negative. Your daughter should be screened for this even if she doesn't have the typical appearance. There is a mosaic form of this disease that is harder to test for and we did not test for that.

Since our whole family was going gluten-free because of cross-contamination issues, she went gluten-free, too. Then our whole family went on the GAPS diet as well (back in February). I have seen some major changes in her - her ADD is pretty much gone, not much anxiety any more, and now she LOVES to eat. I think the diet has been good for her, but she still has Tourette's and she still is tiny.

At her 6 month appointment had barely grown (her younger brother had gained something like 3-4 inches in that time and is taller than she is!) We're going back to the endocrinologist next month and they're going to check her hormone levels, vitamin levels, and probably other things, too. She has recently outgrown clothes so I'm very curious to see how it all stacks up.

They seem to want to give her growth hormones which I am very cautious about. The idea is that once puberty comes on girls don't grow much more, so she needs to get her growth in now. I was a "late bloomer" and her bone age is low so hopefully she has more time. Height predictors put her at 4'7"! It's ok to be short, but they still want you in a booster seat at 4'6" so we're hoping those charts are wrong.

I am sorry for everything you have been through as well.

My daughter has been off gluten officially for two weeks but when we looked back at the last month, she didn't eat much gluten because she wasn't feeling well. She was down to fruit, chicken and a few veggies. However, I think if they decide to do the endoscopy, we will try to gluten her up for it. It will probably still be negative but that is Ok.

I just don't want her miserable anymore. So whatever that takes.

[ravenwoodglass]

Booghead My daughter's aunt, unlce and father all take Prilosec like candy. However, her Aunt was diagnosed as gluten sensitive and went gluten-free. Poof, GERD disappeared. So I thought before we result to yet ANOTHER drug, why not go gluten-free for 3 months and see if it helps. If it does, great. She has so many other gluten related issues, I felt that it was a good course. I was hoping to go to the GI with a list of symptoms that had resolved or were improved off gluten. That's why. We have been battling this for 6 years, what is 3 more months? Also, her symptoms aren't really GERD. She seems to be battling an inflammatory response (swollen lymph nodes around appendix and constipation, among other things).

That was also my families experience. I was given handfuls of PPIs and told to just see which ones worked. After a couple weeks gluten-free I knew they were not needed. My DD only had Gerd and vomiting as far as her GI symptoms were concerned and both also resolved after she went gluten free without the aid of the Prilosec the doctor prescribed her.

PPIs can have what they call a rebound effect also. That ensures that folks have to stay on them because as soon as they stop taking them the symptoms return full force or worse than they were before they started the drugs. IMHO it is better to try the diet and see if that takes care of the problem than to take a drug that has some serious side effects and will likely need to be taken for life once someone has been on them a few months. Personally I think you are going about this the right way and I hope the diet helps her.

Booghead has your father been tested for celiac? If not he and all other family members should be.

[IrishHeart]

You and I have discussed all this ad nauseum, Momma, but just for the record,

like Raven & her family, my Dad, Mom and I were all on proton pump inhibitors (PPIs) for YEARS.

I cannot describe all that happened to my poor Dad without bursting into tears, so I will not recount it (he was a celiac if there ever was one, but it's too late now)

,,, but for me and my Mom ?? That "GERD" disappeared a few months after being gluten-free. Neither of us need medication.

I suffered HORRID burning pain from my mouth to my rectum for YEARS and THOSE DRUGS did NOTHING. I actually have LOW stomach acid, as it turns out.

If in fact, J has an ulcer, h.pylori or esophageal erosion, then prilosec for a few weeks may well be helpful.

Can they get you guys in sooner ??

[researchmomma]

That was also my families experience. I was given handfuls of PPIs and told to just see which ones worked. After a couple weeks gluten-free I knew they were not needed. My DD only had Gerd and vomiting as far as her GI symptoms were concerned and both also resolved after she went gluten free without the aid of the Prilosec the doctor prescribed her.

This is exactly what i wanted to do. If gluten-free resolved it, big smiles all around. If not, then we would have to resort to prilosec I suppose. I can tell you that even after two weeks of being gluten free, she was better by the second week. Better attitude (maybe she felt like she had some control over how she felt!), less stomach pain and less gas. Her friends often tease her about her gas issues but oddly, I haven't heard any of that lately and Family TV time has been less smelly!

[researchmomma]

You and I have discussed all this ad nauseum, Momma, but just for the record,

like Raven & her family, my Dad, Mom and I were all on proton pump inhibitors (PPIs) for YEARS.

I cannot describe all that happened to my poor Dad without bursting into tears, so I will not recount it (he was a celiac if there ever was one, but it's too late now)

,,, but for me and my Mom ?? That "GERD" disappeared a few months after being gluten-free. Neither of us need medication.

I suffered HORRID burning pain from my mouth to my rectum for YEARS and THOSE DRUGS did NOTHING. I actually have LOW stomach acid, as it turns out.

If in fact, J has an ulcer, h.pylori or esophageal erosion, then prilosec for a few weeks may well be helpful.

Can they get you guys in sooner ??

The misdiagnosis of Celiac is one of the saddest things I have seen. It is heartbreaking.

Your history is another reason why I wanted to go gluten-free without prilosec.

So here is my question for you and whomever else has an opinion: she has been truly gluten-free for two weeks so if we put her back on gluten as soon as they call to tell me they want to do the scope, will that be enough time? It would be hard to believe that two weeks of gluten free could fix her up if she is Celiac (although I think she is probably NCGI if anything).

[mushroom]

So here is my question for you and whomever else has an opinion: she has been truly gluten-free for two weeks so if we put her back on gluten as soon as they call to tell me they want to do the scope, will that be enough time? It would be hard to believe that two weeks of gluten free could fix her up if she is Celiac (although I think she is probably NCGI if anything).

It is ery unfortunate that gluten free eating and celiac testing are antagonistic. Two weeks would, I believe, be the outer limit at which the result would not be affected and even then it may well be. In the absence of gluten the antibodies disappear at a rapid rate from the blood stream, and it is amazing how quickly the small intestine can start to repair itself. So even if you put her back on gluten today it may well be too late Or it may not.... But if you are planning on doing the scope the sooner she starts eating lots of gluten the better. I know you don't know if they will do it yet, but if you wait any longer before resuming gluten it will probably not be worth doing the test.

[researchmomma]

It is ery unfortunate that gluten free eating and celiac testing are antagonistic. Two weeks would, I believe, be the outer limit at which the result would not be affected and even then it may well be. In the absence of gluten the antibodies disappear at a rapid rate from the blood stream, and it is amazing how quickly the small intestine can start to repair itself. So even if you put her back on gluten today it may well be too late Or it may not.... But if you are planning on doing the scope the sooner she starts eating lots of gluten the better. I know you don't know if they will do it yet, but if you wait any longer before resuming gluten it will probably not be worth doing the test.

This is what I was wondering! She would be thrilled to be able to eat Eggo Waffles again, lol. Well maybe I will have her go back on gluten until we hear from the GI. She didn't call today and I have a sneaky feeling that she is writing us off!

I did order her negative gene results from Children's. She is gene negative for DQ 2 and 8. No other info and they do not test for half alleles. There are markers on the other HLAs for gluten sensitivity, I wonder why they don't test for those. So strange.

If I put her back on gluten for a few weeks for this scope, what would be the best lab test to order for gluten sensitivity? I mean the private ones? Any thoughts?

Thanks all! My sanity is slowly returning.

[IrishHeart]

This is exactly what i wanted to do. If gluten-free resolved it, big smiles all around. If not, then we would have to resort to prilosec I suppose. I can tell you that even after two weeks of being gluten free, she was better by the second week. Better attitude (maybe she felt like she had some control over how she felt!), less stomach pain and less gas. Her friends often tease her about her gas issues but oddly, I haven't heard any of that lately and Family TV time has been less smelly!

this speaks volumes!! After all you guys have been through, and as miserable as poor J has been, I am delighted for you that some things are resolving already!!

[carecare]

So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO in our peds' office as well as the whole clinic in our city as I was refused a second opinion within the clinic even though it would have been another office across town. The GI dr within the same clinic denied us as well saying he wouldn't take her because she's 17. Each time I called a place they'd open her file and read what the ped said...which I really don't know what she said...just know the last thing she wrote was "possible pulled muscle" (for my daughter who has had 3 1/2 wks of lower quadrant pain). I finally called a provider out of town 45 minutes away and they got her an appointment pretty quickly.

Anyway, my 3 other kids just had negative biopsies for celiac...yet I know gluten bothers them. I had one son test positive on one of the celiac blood tests so something is going on. His muscle pain went away within 2 wks of a gluten free diet and came back horribly when gluten was added back in. After the negative biopsies the dr prescribed all 3 kids prevacid. ARgh. I can see why in the case of my daughter who has a hiatal hernia and eosipholinic esophogitis (sp??)...her esophagus was quite extensively inflamed. We are all going gluten free and I hope the prevacid is not needed. I know that my husband's severe indigestion went away immediately upon starting his gluten free diet. So I am pretty sure my kids will be the same.

Good luck with your daughter. Do you think you could get a different GI doctor even if you have to go to a different town? You might feel better knowing they are starting fresh and not getting an earful from other doctors that have seen your daughter.

CC

[domesticactivist]

This is what I was wondering! She would be thrilled to be able to eat Eggo Waffles again, lol. Well maybe I will have her go back on gluten until we hear from the GI. She didn't call today and I have a sneaky feeling that she is writing us off!

I did order her negative gene results from Children's. She is gene negative for DQ 2 and 8. No other info and they do not test for half alleles. There are markers on the other HLAs for gluten sensitivity, I wonder why they don't test for those. So strange.

If I put her back on gluten for a few weeks for this scope, what would be the best lab test to order for gluten sensitivity? I mean the private ones? Any thoughts?

Thanks all! My sanity is slowly returning.

Kimball Genetics division of Labcorp did our genetic testing and while we didn't get the full results back at first (the thing they returned to the doctor with a summary of risk), I was able to call the genetic councilor once I had the results from the doctor and have them send me the full results. It looked like gobbledygook at first but after a lot of time on wiki and some help from Skylark it all made sense. It's my understanding that Kimball, Promethius, and Enterolab all test HLA DQ alpha and beta where some labs only test beta.

You might try calling the lab itself if you haven't already - maybe they test for more than they report.

[researchmomma]

Kimball Genetics division of Labcorp did our genetic testing and while we didn't get the full results back at first (the thing they returned to the doctor with a summary of risk), I was able to call the genetic councilor once I had the results from the doctor and have them send me the full results. It looked like gobbledygook at first but after a lot of time on wiki and some help from Skylark it all made sense. It's my understanding that Kimball, Promethius, and Enterolab all test HLA DQ alpha and beta where some labs only test beta.

You might try calling the lab itself if you haven't already - maybe they test for more than they report.

good idea!

[researchmomma]

So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO in our peds' office as well as the whole clinic in our city as I was refused a second opinion within the clinic even though it would have been another office across town. The GI dr within the same clinic denied us as well saying he wouldn't take her because she's 17. Each time I called a place they'd open her file and read what the ped said...which I really don't know what she said...just know the last thing she wrote was "possible pulled muscle" (for my daughter who has had 3 1/2 wks of lower quadrant pain). I finally called a provider out of town 45 minutes away and they got her an appointment pretty quickly.

Anyway, my 3 other kids just had negative biopsies for celiac...yet I know gluten bothers them. I had one son test positive on one of the celiac blood tests so something is going on. His muscle pain went away within 2 wks of a gluten free diet and came back horribly when gluten was added back in. After the negative biopsies the dr prescribed all 3 kids prevacid. ARgh. I can see why in the case of my daughter who has a hiatal hernia and eosipholinic esophogitis (sp??)...her esophagus was quite extensively inflamed. We are all going gluten free and I hope the prevacid is not needed. I know that my husband's severe indigestion went away immediately upon starting his gluten free diet. So I am pretty sure my kids will be the same.

Good luck with your daughter. Do you think you could get a different GI doctor even if you have to go to a different town? You might feel better knowing they are starting fresh and not getting an earful from other doctors that have seen your daughter.

CC

Keep me posted on how it goes.

[researchmomma]

My daughter said she has been faking feeling better. Lovely

[mushroom]

My daughter said she has been faking feeling better. Lovely

What????? Because she was expected to?

[domesticactivist]

Oops, meant to reply, not "like" that your daughter has been faking. I am glad she told you, though. Sometimes being so focused on our kids health can make it hard for them to honestly communicate with us. I'm sure she hoped she would feel better, too. That may have played into it. At any rate, it's good she told you.

I really think it's possible there is more than/something other than celiac going on. However, it can take longer than 2 weeks to feel better gluten-free. If food is part of her problem maybe it would be easier after your tests are run to try a simpler diet and slowly introduce things? Our family has had success with the GAPS diet, which starts with stock and slowly introduces probiotic foods, vegetables, meats, eggs, fruits, and cultured milk products. If you are careful to keep the introductions spaced apart you may make some good discoveries as she heals.

[ravenwoodglass]

My daughter said she has been faking feeling better. Lovely

She can't fake not smelling up the TV room and as another poster stated 2 weeks is not long enough to heal. With things so up and down when we are healing she may be having some days where she is feeling a bit better and others where she is not. I hope you are able to get some conclusive results from another doctor or from putting her back on gluten and getting an endo. I wish you the best of luck in trying to figure things out and that she is feeling better soon.

[IrishHeart]

Oh c'mon now.

I am going to be blunt here. How can she "fake" not having smelly farts? That's impossible, hon! You yourself said she seemed less moody!

Momma, you have told me she can be manipulative with her eating habits. That she displays anorexic and compulsive habits with preferred foods. That she has complained of stomach issues for years. That she can very very difficult about eating.

And trying any other modified diet right now (GAPS or otherwise) will only be met with equal resistance, I fear.

Is it POSSIBLE that you're getting played here??

Do you think she said this so she can go back to consuming gluten?? She heard what the doctor said and now, she is using it??

Two weeks is not enough time to tell anything. I know that is not what you (or she) want to hear, but it is the truth.

Let her have gluten and see what happens. That may be all it takes.

But even if she continues to choose ONLY those foods that she wants, she will still have an unbalanced diet. There's more going on here and maybe it is time for a nutritional consult??

I hope you find an answer to her many health issues. I think you know what needs to be done, but without cooperation from ALL parties involved, (medical personnel and family members, too) it's not going to happen.

IMHO

[researchmomma]

What????? Because she was expected to?

Well I don't believe her. She said she was faking feeling better because she we were talking about our friend's daughter who is getting a car for her 16th bday. Her parents said they were doing that because she was such a good girl, never complained or asked for anything. We were discussing that (not with her but she overheard) back in August. J said she wants to be good so she can have a car.

I don't buy any of this. She doesn't want to be different and gluten free.

This all came out after I told her that we might be having the endoscopy so it would be good to go back on gluten. She was so excited that she could eat whatever she wanted. However, by the end of the night she was a mess emotionally.

She was worried that the endo would reveal a horrible cancer and she said eating gluten-free for two weeks only made her bowels hurt slightly less but she is still constipated. Then came the what ifs. What if the endo shows nothing, if we go on prilosec and that doesn't work, I always feel like this etc.

Just for a stupid endoscopy I have put her back on gluten and undermined our progress. I think she believes I am doubting the gluten connection but I am not.

My whiny, scared, sick little girl came back in full force last night at bedtime.

I can't flip flop on her again so I will leave her on gluten until we hear from the doc (the endocrinologist said she would call if the GI refused the scope). If no scope, back on gluten until or Feb 9th appt. If a scope, glutened up. I am sure the scope will not be for awhile as the GI does not think we are an emergent case by any means.

Wow, what a mess.