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Yet Another Doctor's Opinion


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122 replies to this topic

#16 carecare

 
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Posted 27 December 2011 - 04:51 PM

So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO :blink: 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
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#17 domesticactivist

 
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Posted 27 December 2011 - 04:53 PM

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.
  • 0
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.

#18 researchmomma

 
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Posted 27 December 2011 - 05:05 PM

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!
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#19 researchmomma

 
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Posted 27 December 2011 - 05:07 PM

So sorry you are dealing with crappy doctors. I am sure I am now labeled the WACKADOO :blink: 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.
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#20 researchmomma

 
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Posted 27 December 2011 - 07:33 PM

My daughter said she has been faking feeling better. Lovely
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#21 mushroom

 
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Posted 27 December 2011 - 07:44 PM

My daughter said she has been faking feeling better. Lovely


What????? Because she was expected to? :blink:
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#22 domesticactivist

 
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Posted 27 December 2011 - 09:12 PM

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.
  • -2
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.

#23 ravenwoodglass

 
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Posted 28 December 2011 - 04:51 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#24 IrishHeart

 
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Posted 28 December 2011 - 06:44 AM

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
  • 1

"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 

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"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


#25 researchmomma

 
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Posted 28 December 2011 - 07:57 AM

What????? Because she was expected to? :blink:


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.
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#26 IrishHeart

 
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Posted 28 December 2011 - 08:45 AM

I told you my thoughts in our PM exchange.

Constipation is often resolved with 2 BIG glasses of WATER every morning and a probiotic every day. Culturelle works well.


Just try it, Please?? ;)

If Jordan becomes very ill and uncontrollable emotionally because of her resumption of gluten, I wonder how long you all will be able to stand if before she makes the connection herself and says "Mom, you are right!" No gluten for me.

I wish you luck, hon.
  • 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


#27 domesticactivist

 
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Posted 28 December 2011 - 09:18 AM

Good advice from IrishHeart. I also want to add what about just laying on the love for a while? I'm sure you already do show her love and sympathy for her pain, and I imagine you must be exhausted emotionally by all this, but with going back on an unrestricted, gluten diet it's good timing to forget the struggles and just show acceptance and compassion.

My son seems to need this in spades. He's been gluten-free for over a year and gaps since feb and is doing much better and is very good about sticking with it. But he still wishes he didn't have to and doesn't like feeling different. It wears me out, truthfully, but when I can be very accepting about it that helps him.

I'm doing a gluten challenge right now after a year gluten-free and most of that on gaps and I find that my perception of how I've felt along this journey is very warped. I've been blogging it and going back and reading about my symptoms gives me a better grasp on reality. I tend to think however I feel is how I always feel. My partner tells a different story. I was pegged as a hypochondriac most of my life and that plays into it, I think. It's hard for me to take myself seriously when it comes to rating symptoms. My partner does better at telling what's up with me than I do. She says her nose doesn't lie, lol. She also has to put up with my moods.

Maybe your daughter is in a similar boat.

I don't know what your diet struggles with her have been in the past but it seems to me she is at an age where she might be ready to take some of that burden of keeping her diet right off your shoulders. I know with my daughter food an control had been a big issue until she agreed to try gaps and we got a few weeks into it. Her relationship with food and with us regarding it has totally changed. Can you come to an agreement with her until after the scope to lay off worrying about food, an then to decide with her what course of action she wants to try once the results are back!

She may make some decisions that surprise you. If she makes a bad decision for her gut she'll be the one to feel the pain and in the end that may guide her to better choices in the end. My kids have made good decisions fir the most part but do count on us to make sure they stick with it. Even in moments of struggle they know the reasons so the fight is not a battle of wills so much as an emotional release.
Do you read family feeding dynamics or the fat nutritionist? I like the approach on both these sites.
  • 0
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.

#28 researchmomma

 
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Posted 28 December 2011 - 09:34 AM

I told you my thoughts in our PM exchange.

Constipation is often resolved with 2 BIG glasses of WATER every morning and a probiotic every day. Culturelle works well.


Just try it, Please?? ;)

If Jordan becomes very ill and uncontrollable emotionally because of her resumption of gluten, I wonder how long you all will be able to stand if before she makes the connection herself and says "Mom, you are right!" No gluten for me.

I wish you luck, hon.


Hey, before I read your post I just had the water talk with her. Yes, she is taking Culterelle but I did forget it last night. Yesterday was a mess.

Thanks Domestic for your advice. When she is on gluten we are down to 400 calories per day and at 70lbs and 12 years old, she can't afford that. I will try to let her make her own choices perhaps but her daily pain effects our family in profound and significant ways. Our house has been peaceful but that ended last night after a gluten filled dinner (not sure it is direct but wow) so we will see where this takes us.
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#29 domesticactivist

 
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Posted 28 December 2011 - 10:20 AM

Hey, before I read your post I just had the water talk with her. Yes, she is taking Culterelle but I did forget it last night. Yesterday was a mess.

Thanks Domestic for your advice. When she is on gluten we are down to 400 calories per day and at 70lbs and 12 years old, she can't afford that. I will try to let her make her own choices perhaps but her daily pain effects our family in profound and significant ways. Our house has been peaceful but that ended last night after a gluten filled dinner (not sure it is direct but wow) so we will see where this takes us.


Your daughter has some weight on mine! She'll be 13 in April and is only 57 lbs. I bet your dd is a bit taller, though.

400 calories a day does sound alarming (and we have been there, too)... How much does she eating when gluten-free?

I'm doing a gluten challenge and it makes me feel like crap and not want to eat, too. Though I think it sounds worse for your daughter. My symptoms are not as severe as many people's. When I don't eat other stuff I find myself passing out. To prevent this, I try to eat all my gluten at once, and really fast, either first thing in the morning or right before bed. This wouldn't work if I was a puker, since it would all come right back up. My troubles seem to be more on the other end, though, so if I can get it down before I really feel what I'm doing to myself that helps. I do wake up feeling especially sick after eating it at night, but by 11 AM or so I can usually eat something else. If I eat it in the morning I can usually manage to eat something when the rest of the family is eating supper. Snacks like apples seem to work for me even when I have the upset tummy from the gluten. It's hard to have an appetite for anything more substantial. I've also thought about getting Bob's Red Mill Vital Wheat Gluten and drinking it in a glass of water or sprinkling it on other food all day long. I'm afraid that will put me off the foods I sprinkle it on, though, so I haven't tried that yet.

My daughter was very low calorie at my house before we changed our diet, but happy to gorge on sugar. I'm copy pasting this out of an article I wrote:

She never even made it onto the growth chart. She would eat extremely small portions of foods. Even with foods she normally would eat, shed have one tiny bite and keep it in her mouth for 5 minutes or longer, making faces, sometimes spitting it out. She also could go without eating for days at a time if she didnt feel for what was offered.

We tried all the standard advice for getting picky eaters to eat, without stressing too much about it. Being unschoolers, we had the philosophy that kids will self-regulate, and naturally choose a healthy diet over a period of time. That worked for our son, but not our daughter.

After her dad and I split up when she was 7, and over the years she slowly stopped eating almost anything at our house. She actually told me that she didnt have to eat because she could have whatever she wanted at his house (3-4 day alternating schedule). When we kept a food log for her because my mom was afraid she was anorexic we found out that she was eating only a couple hundred calories a day at my house and several thousands each day at his house. One of the first days recorded included at her dads included: cheesecake, Popsicles, candy, cherry pie, milkshake, a few french fries, a bite of a garden burger, and flavored yogurt. He didnt start off feeding her this way he was frustrated with the daily battle of trying to get her to eat anything else.


We were able to turn this around last year (age 11) with her being on board and with her dad agreeing to support her new way of eating. The sensory processing stuff has gotten much better with this diet, and she has an appetite that she never had before.

More from the article:
She had a miserable first week or so, but was game to try it. After a full week of nothing but the soups, both the kids were eating what was served with enthusiasm. Each new food addition became exciting, and they both started eating a lot more, too. When we reintroduced fruit and when we reintroduced cheese the kids started getting more picky again. We have learned that when this happens, we have to cut back on that stuff and eat more soup and basic vegetables and meats.

She ate all this plus a green salad, then went back for seconds on turkey! The only thing she would have touched last year is the cranberry sauce.

My picky girl, who last year only ate a few bites of mac & cheese and pie at Thanksgiving dinner had a full plate this year. She ate roasted turkey, chestnut-pork stuffing, cranberry sauce, roasted brussels sprouts, roasted cauliflower, green salad with walnuts & apple, then went back for seconds on turkey. After that she had two slices of squash pie with almond crust (1/2 cup of honey in the whole thing), and some homemade ice cream.

  • 0
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.

#30 domesticactivist

 
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Posted 28 December 2011 - 10:23 AM

As for the emotional stuff and the moods, I feel you there. We get the same thing from our kids... and from me, I'm sorry to say. :( It's good to blame gluten rather than the person, though. "I blame gluten" has become a joke in our house!
  • 0
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.




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