Test Results

[e&j0304]

I just wanted to let you know the results we got in the mail today. I am so frustrated because in the doctor's clinical notes he just keeps stating things like, "The parents report....but it was not noticed in the exam" It was almost like he was saying we were making all of this up! He also kept saying that Ella was obese or would become obese. This is a 27 pound 2 1/2 year old who has not gained any weight in a LONG time. How does that make her obese???? He said that she likely does not have celiac because she does not appear to have a malabsorption problem. How would he explain the fact that she was always starving, eating a ton and not gaining, her hair was falling out in clumps, etc??

Anyway, here are her results.

Thyroid Stimulating Hormone 2.73uIU/ML (.27-4.20)

Thyrozine - Free 1.34 NG/DL (.93 - 1.70)

IGA, Serum 89 MG/DL (22-129)

I'm assuming the numbers in parenthesis are the reference ranges??

Ok, just another small disappointment, but she is doing SO well on this diet that I am not going to let this get me down. She is acting like a normal, happy little girl now and we just need to find a doctor who will work with us and support us on having her on this diet.

Thanks for all your help!

Shannon

[KaitiUSA]

  e&j0304 said:

I just wanted to let you know the results we got in the mail today.  I am so frustrated because in the doctor's clinical notes he just keeps stating things like, "The parents report....but it was not noticed in the exam"  It was almost like he was saying we were making all of this up!  He also kept saying that Ella was obese or would become obese.  This is a 27 pound 2 1/2 year old who has not gained any weight in a LONG time.  How does that make her obese????  He said that she likely does not have celiac because she does not appear to have a malabsorption problem.  How would he explain the fact that she was always starving, eating a ton and not gaining, her hair was falling out in clumps, etc??

Anyway, here are her results.

Thyroid Stimulating Hormone  2.73uIU/ML (.27-4.20)

Thyrozine - Free    1.34 NG/DL  (.93 - 1.70)

IGA, Serum      89 MG/DL  (22-129)

I'm assuming the numbers in parenthesis are the reference ranges??

Ok, just another small disappointment, but she is doing SO well on this diet that I am not going to let this get me down.  She is acting like a normal, happy little girl now and we just need to find a doctor who will work with us and support us on having her on this diet. 

Thanks for all your help!

Shannon

<{POST_SNAPBACK}>

She did not have the full panel for celiac done according to those results. She had 1 of the 5 tests done. Definitely can't rule it out with just that.

I am glad she is having some good response to the diet

[e&j0304]

Thanks, Katie. I was wondering about that. This doctor stated that the test he was doing was 95% accurate in diagnosing celiac. Was he right? I just cannot believe the change in my daughter after being on this diet. There has to be something to the diet change. We are not putting her back on gluten, but just need to find a doc who will work with us in case we need a note or something for school saying she's gluten intolerent. Hopefully we can find one! I am going to her old ped. today to sign over her records to a new one who we will meet for the first time next week.

Thanks again for your help,

Shannon

[KaitiUSA]

  e&j0304 said:

Thanks, Katie.  I was wondering about that.  This doctor stated that the test he was doing was 95% accurate in diagnosing celiac.  Was he right?  I just cannot believe the change in my daughter after being on this diet.  There has to be something to the diet change.  We are not putting her back on gluten, but just need to find a doc who will work with us in case we need a note or something for school saying she's gluten intolerent.  Hopefully we can find one!  I am going to her old ped. today to sign over her records to a new one who we will meet for the first time next week.

Thanks again for your help,

Shannon

<{POST_SNAPBACK}>

No, he didn't test for celiac. The tTG is the best test and will take place of biopsies in kids soon. However, the complete panel is very effecient and the total IgA serum is used to rule out IgA deficiency. This will tell you nothing in terms of celiac other then she would not have IgA deficiency

[aidansmom]

NONE of those are tests for Celiac disease. Your dr. did a serum IgA. This is done as part of the Celiac Panel to check for IgA deficiency. If deficient, then the AGA IgA test is not relevant. Check back with your doctor to see if he did the rest of the celiac panel:

EMA or tTG (supposedly the most accurate)

AGA (antigliadin) IgG

AGA IgA (would not be elevated if serum IgA was abnormally low)

According to our new (and excellent) pedi GI, the tTG is the ONLY test they consider accurate now. My son had elevated AGA IgG and AGA IgA but his tTG was 0. He only had minimal damage on endoscopy. He responded after 1 week on a gluten-free diet, so take the tests with a grain of salt. It's just a small part of the diagnosis (I think).

[e&j0304]

ok, so are you all basically telling me that she didn't have the appropriate tests done?? I am so frustrated with doctors right now that I'm not sure I'll ever be able to trust one again. I know in my heart that Ella at the very least has a gluten sensitivity based on her response to this diet, but it would be nice to get a medical professional to agree to that.

In the dr's clinical notes he wrote, "Ella's symptoms are certainly not typical of celiac disease. While it is true that people with malabsorption often have hyperphasia, this child has no evidence of malabsorption. Nevertheless, we will go ahead and perform celiac antibody testing, specifically for endomysial antibody and tissue transglutaminase antibody."

It kills me that she has "no evidence of malabsorption". What would you call the starving, bloated abdomen, loss of hair, anemia, etc...?????? What in the world is wrong with somone who can't put that together?? I am just so angry at all of this.

Thank you all for your support. It really helps to have people there who have been through all of this.

SHannon

[KaitiUSA]

  e&j0304 said:

ok, so are you all basically telling me that she didn't have the appropriate tests done?? 

I understand your frustration. She did not have the tests done. These are the tests that need to be done for celiac below. If that doctor is using that test to rule celiac out I wonder how many people walked out of there with celiac. That doctor needs a celiac lesson.

Anti-Gliadin (AGA) IgA (detects gluten sensitivity)

Anti-Gliadin (AGA) IgG (detects gluten sensitivity)

Anti-Endomysial (EMA) IgA (detects damage)

Anti-Tissue Transglutaminase (tTG) IgA (detects damage-BEST TEST)

Total Serum IgA (rules out IgA deficiency)

[tarnalberry]

  e&j0304 said:

ok, so are you all basically telling me that she didn't have the appropriate tests done??  I am so frustrated with doctors right now that I'm not sure I'll ever be able to trust one again.  I know in my heart that Ella at the very least has a gluten sensitivity based on her response to this diet, but it would be nice to get a medical professional to agree to that.

In the dr's clinical notes he wrote, "Ella's symptoms are certainly not typical of celiac disease.  While it is true that people with malabsorption often have hyperphasia, this child has no evidence of malabsorption.  Nevertheless, we will go ahead and perform celiac antibody testing, specifically for endomysial antibody and tissue transglutaminase antibody."

It kills me that she has "no evidence of malabsorption".  What would you call the starving, bloated abdomen, loss of hair, anemia, etc...??????  What in the world is wrong with somone who can't put that together??  I am just so angry at all of this. 

Thank you all for your support.  It really helps to have people there who have been through all of this.

SHannon

<{POST_SNAPBACK}>

that note that he wrote "specifically for endomysial antibody and tissue transglutaminase antibody" IS calling out for (at least part of) the correct testing. I would follow up with the doctor's office and the lab - either the tests he called for didn't get run, or the results on them weren't returned to you.

[e&j0304]

I just thought of another thing. When I did call and talk to the doctor's nurse, she told me that Ella had "no levels" and she had never seen a child with Ella's results end up with celiac. She said that Ella did not have a "wheat allergy". What would that have to do with anything, and how could she determine a wheat allergy from those tests?

I don't know what to do...I really do want a diagnosis, but I also never want to make Ella sick again by putting her back on gluten.

I wish those doctors could all see what a different child Ella is now. I never want her to go through what she had to go through for 2 years ever again. I am amazed every day at her progress and it would be so unfair to her to subject her to a gluten-filled diet again just for some tests because the doctor didn't do his job correctly.

Thanks for listening to me rant....

Shannon

[Guest nini]

First of all Shannon... {{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

I completely understand your frustration. The ped. GI that I took Chey to tried to feed me the same line of crap with the same inadequate testing. Of course the testing is inconclusive because they didn't do the correct tests. I remember being so angry at that idiot dr. Why couldn't he see what I plainly could? Especially since I am positively Celiac. UGH, dr.s...

Anyway, call around to different pediatricians before you go making another appt. for Ella. I'm sure you can find one that will be supportive in your choice to keep her on the diet based on positive dietary response. I did.

[Jen H]

Hey Shannon,

So sorry to hear that your family is dealing with this. I hope that you will discover an answer for your daughter soon. I was recently diagnosed with celiac disease and it was discovered through the tTG test that a few people already mentioned. My GI doctor said that the test is 95% reliable and is one of the best tests you can take to discover the illness. Mine did end up coming back positive.

Jen

[lbsteenwyk]

Shannon:

Your doctor is full of crap!!! This makes me so angry. Find another doctor who will support you in your decision to keep your daughter gluten free. Ella sounds like she is having an amazing response to the gluten free diet. Are you getting support from your spouse and other family members to keep her gluten free? Have others close to her been seeing the huge improvement as well? I know it is harder not to have a definitive diagnosis for your child when other family members are not being supportive.

My daughter was never positively diagnosed with celiac disease, but I've been fortunate in that my husband and both sets of grandparents have been supportive of our keeping her gluten free. This was largely because they saw the huge improvements in her for themselves.

[scaredparent]

I agree with lbsteenwyk. My son never had a postive dx but my son has had great improvement on his diet. My son been completely different and he a wonderful kid now. I would never put my son back on glutten. His gi dr told me that their was nothing wrong with my son but he is the youngest of 5 and I knew that 18 stools a day and vomitting everyday and sleeping 20-22 hrs a day was not normal. I am so glad we have been glutten free for 7 mo and we have all the support we need and is right here on this website. People on this site have taught me more than any dr and dietition could have taught me. My husband and my parents and inlaw all support us because they all have seen a huge difference. Good luck and sometimes dr's don't know everything and in my opinion you don't need a dianosis by a dr and if she is doing well on the diet continue it.

[Rachel--24]

  e&j0304 said:

Thyroid Stimulating Hormone  2.73uIU/ML (.27-4.20)

Thyrozine - Free    1.34 NG/DL  (.93 - 1.70)

<{POST_SNAPBACK}>

These tests were for your daughters thyroid levels...which appear normal. Nothing for Celiac Disease though.

[e&j0304]

Thanks so much for your support, everyone. It is so helpful to come here and talk to people who actually know what they're talking about! I may take your thoughts with me when I meet with Ella's new ped.

I guess that we will just assume that Ella has a gluten intolerence and forget further testing. I hope that doesn't become an issue in the future. It is too bad that these "specialists" obviously don't really know what they're doing. We spent 2 years of Ella's life going back and forth to doctor's appointments only to have disappointment after disappointment and lots of, "hmmm, well, she probably has a behavioral problem, maybe you should see (insert name of "specialist" here)", "there doesn't seem to be anything physically wrong with her" "blah, blah, blah," etc..... This poor child has gone through so much and all we had to do was remove gluten from her diet. I have learned much more from all of you than I've learned from any doctor and I'm very thankful to have found this board! I just wish we would have found it sooner!!

All that aside, Ella is doing GREAT and had another wonderful day today. It's so amazing to watch her playing, engaging in activities, and happy. It's been a blessing and a total miracle. Someone asked if our friends and relatives have noticed a difference in Ella. Yes, everyone who knows her has noticed a BIG change in her. Everyone is thrilled that we have finally been able to help her. Our entire family is on board with this and everyone has been so supportive. Both sets of grandparents as well as her aunt and uncles and family friends are all supporting our decision to keep Ella gluten-free. This is probably because they have all seen with their own eyes how well she's doing now. I think everyone is amazed that there has been this much change in such a short period of time.

Thank you all again,

Shannon

[lbsteenwyk]

I'm glad to hear your family is supportive of your decision to keep Ella on theGF diet!

I think you're making a wise decision not to pursue further testing. Your poor daughter has been through enough doctor's visits. I would make one last call to your doc to see if he actually did order a TTG or EMA, get a copy of the results if he does have them, and then RUN like he**. This guy sounds like a real idiot. I work with docs all the time, and trust me, I've seen a lot of stupidity! Sometimes I think arrogance and ignorance are prerequisits to get into Med School! There are a few good ones, though, so keep looking until you find a supportive doc. I hate to make generalizations, but I've found female MDs to be better listeners and more open to the patient's input.

Good luck to you as you delve into the gluten free life!

[key]

  e&j0304 said:

Thanks so much for your support, everyone.  It is so helpful to come here and talk to people who actually know what they're talking about!  I may take your thoughts with me when I meet with Ella's new ped.

I guess that we will just assume that Ella has a gluten intolerence and forget further testing.  I hope that doesn't become an issue in the future.  It is too bad that these "specialists" obviously don't really know what they're doing.  We spent 2 years of Ella's life going back and forth to doctor's appointments only to have disappointment after disappointment and lots of, "hmmm, well, she probably has a behavioral problem, maybe you should see (insert name of "specialist" here)", "there doesn't seem to be anything physically wrong with her" "blah, blah, blah," etc..... This poor child has gone through so much and all we had to do was remove gluten from her diet.  I have learned much more from all of you than I've learned from any doctor and I'm very thankful to have found this board!  I just wish we would have found it sooner!!

All that aside, Ella is doing GREAT and had another wonderful day today.  It's so amazing to watch her playing, engaging in activities, and happy.  It's been a blessing and a total miracle.  Someone asked if our friends and relatives have noticed a difference in Ella.  Yes, everyone who knows her has noticed a BIG change in her.  Everyone is thrilled that we have finally been able to help her.  Our entire family is on board with this and everyone has been so supportive.  Both sets of grandparents as well as her aunt and uncles and family friends are all supporting our decision to keep Ella gluten-free.  This is probably because they have all seen with their own eyes how well she's doing now.  I think everyone is amazed that there has been this much change in such a short period of time.

Thank you all again,

Shannon

<{POST_SNAPBACK}>

[e&j0304]

I just want to thank you all again for your support. I have been so appreciative of all the support I've gotten here. I did call Ella's GI doc. and apparently he did run a Ttg but they just didn't send those results to me for some reason. She tested totally normal and therefore they do not believe she has celiac. They are basing their decision on the fact that her tests were neg. and she doesn't have the "classic" symptoms that they're looking for.

On the up side, Ella is still doing extremely well. I actually just took some "after" pictures of her belly (I did "before" ones about 4 weeks ago) and the difference is so amazing. I wish I knew how to post pictures on here so I could show you all. Her tummy actually looks normal now. She is also so much happier and seems full after eating. She is no longer asking to eat all the time and is having fun playing with friends instead. Hopefully we will notice a difference in her hair soon. It is still falling out.

I guess we'll never know exactly what's wrong with Ella, but I do know that this is working and we will stay with it. We meet with her new ped. in 2 days and I'm excited. I will take the pictures in there so she can see the difference. I also have video of Ella's behavior before the diet and 2 hours worth of tapes of her eating non-stop. Hopefully she'll care enough to listen to what we have to say and try to help us with this.

Again, thanks to everyone! We'll definitely be sticking around!

Shannon and Ella