Help for diagnosing toddler

[Guest guest]

Hi,

I am trying to figure out if my 2-1/2 year old daughter has celiac disease. I

have been raising her GF because it is easier for me because I am gluten free.

Also, the times I have given her gluten it has seemed to cause her problems.

The trouble is since she is on a gluten free diet, how do I get her diagnosed?

I had the genetic test recently done and am waiting for the results.

About a year ago she had a blood panel run and the doctor said all the tests

were normal for celiac. She was GF at the time so I assumed the tests would be

normal. Am I wrong?

What advice do you have?

Thanks!

[Guest guest]

This is something that I'll have to think about as well... We're expecting our

first in July.

You are correct- your daughter would need to be on a gluten diet for antibody

blood tests to have any diagnostic value. If the genetic test comes back

positive, you may want to consider a gluten challenge (for 3-6 months) and then

have a blood test done. The gold standard of diagnosis with traditional doctors

requires a gluten challenge, antibody blood testing, and then follow up biopsy

if needed.

Good luck!

-

--- In , " and Steve Sinclair " <slsinclair@...>

wrote:

>

> Hi,

> I am trying to figure out if my 2-1/2 year old daughter has celiac disease. I

have been raising her GF because it is easier for me because I am gluten free.

Also, the times I have given her gluten it has seemed to cause her problems.

The trouble is since she is on a gluten free diet, how do I get her diagnosed?

I had the genetic test recently done and am waiting for the results.

>

> About a year ago she had a blood panel run and the doctor said all the tests

were normal for celiac. She was GF at the time so I assumed the tests would be

normal. Am I wrong?

>

> What advice do you have?

>

> Thanks!

>

[Guest guest]

The genetic test will not tell you if your daughter has celiac

disease or not, it will just show if it’s a possibility for her to have

it or not.

I am in the 1.1% of the celiac population with a DQ2/DQ2 gene

combo (which means I received it from both parents). i have the highest

risk genetic coding one can possibly have. I've attached a link to help

you better understand it (I know I needed it!).

http://www.dieticiansblog.com/2008/02/11/new-changes-in-prometheus-celiac-disease-dq-genetic-reporting-help-determine-your-risk-of-severe-autoimmune-gluten-related-disease/

Here's a little help. Out of the 46 chromosomes, chromosome

#6 is where the celiac gene resides. On chromosome #6 you get a DQ gene

from each parent. You have a chance of getting DQ1 through DQ9. The

high risk celiac genes are DQ2 and DQ8. If you have one of these from a

parent you chances are increased. So a person could be DQ2/DQ7 or

DQ5/DQ8, making you heterozygous. However if you have a double copy you

are homozygous. The 2 highest celiac combos are DQ2/DQ2 and

DQ8/DQ/8...with DQ2/DQ2 being the absolute celiac combo...if a person has this

combo i believe the high risk # of forming/having the disease is around

31%.

is right, the gluten challenge is the sure way to find

out, but it’s very controversial to go back on gluten if you’ve

been off just to get a positive test result.

From:

[mailto: ] On

Behalf Of seamaiden399

Sent: Tuesday, June 09, 2009 10:05 AM

Subject: [ ] Re: Help for diagnosing toddler

This is something that I'll have to think about

as well... We're expecting our first in July.

You are correct- your daughter would need to be on a gluten diet for antibody

blood tests to have any diagnostic value. If the genetic test comes back

positive, you may want to consider a gluten challenge (for 3-6 months) and then

have a blood test done. The gold standard of diagnosis with traditional doctors

requires a gluten challenge, antibody blood testing, and then follow up biopsy

if needed.

Good luck!

-

>

> Hi,

> I am trying to figure out if my 2-1/2 year old daughter has celiac

disease. I have been raising her GF because it is easier for me because I am

gluten free. Also, the times I have given her gluten it has seemed to cause her

problems. The trouble is since she is on a gluten free diet, how do I get her

diagnosed? I had the genetic test recently done and am waiting for the results.

>

> About a year ago she had a blood panel run and the doctor said all the

tests were normal for celiac. She was GF at the time so I assumed the tests

would be normal. Am I wrong?

>

> What advice do you have?

>

> Thanks!

[Guest guest]

,

If your child has problems when she eats gluten and feels better when GF, well

then she has Celiac. Let me qualify that. Many celiac experts believe that

Celiac, i.e. villous atrophy and the associated symptoms, is essentially the

most advanced stage of someone who is gluten-sensitive. So if your daughter

responds well to a GF diet, it is most likely an indicator that continued

life-long exposure to gluten would bring on full-blown celiac. Whether she is

celiac or gluten-sensitive, the label doesn't really matter as the " cure " is the

same for both.

Ironically, even though biopsy is considered the " gold standard " for celiac

disease, doctors validate the test result with two other things: the presence of

symptoms and they try a GF diet and see if the symptoms abate; if so they then

reintroduce gluten in large quantities and then see if the symptoms return.

Indeed, doctors think a positive biopsy result is suspect if there are no

symptoms or if the patient doesn't respond to a GF diet and then reintroduction.

The point is, if the GF diet protocol is the validation for a biopsy well then

why worry about " getting a diagnosis " ? It sounds like you have already diagnosed

it.

-

--- In , " and Steve Sinclair " <slsinclair@...>

wrote:

>

> Hi,

> I am trying to figure out if my 2-1/2 year old daughter has celiac disease. I

have been raising her GF because it is easier for me because I am gluten free.

Also, the times I have given her gluten it has seemed to cause her problems.

The trouble is since she is on a gluten free diet, how do I get her diagnosed?

I had the genetic test recently done and am waiting for the results.

>

> About a year ago she had a blood panel run and the doctor said all the tests

were normal for celiac. She was GF at the time so I assumed the tests would be

normal. Am I wrong?

>

> What advice do you have?

>

> Thanks!

>

[Guest guest]

Hi, when I was diagnosed last year, I had my then 2-year-old tested. He was

negative, but the doctor cautioned me that in children under three test results

can be ambiguous and to retest when he's older. I think if you really want to

figure this out now, you will need to find a pediatric gastroenterologist who

has experience with this. You can probably get a referral from your

pediatrician. Good luck!

kristin

--- In , " and Steve Sinclair " <slsinclair@...>

wrote:

>

> Hi,

> I am trying to figure out if my 2-1/2 year old daughter has celiac disease. I

have been raising her GF because it is easier for me because I am gluten free.

Also, the times I have given her gluten it has seemed to cause her problems.

The trouble is since she is on a gluten free diet, how do I get her diagnosed?

I had the genetic test recently done and am waiting for the results.

>

> About a year ago she had a blood panel run and the doctor said all the tests

were normal for celiac. She was GF at the time so I assumed the tests would be

normal. Am I wrong?

>

> What advice do you have?

>

> Thanks!

>

[Guest guest]

We are taking a similar approach with our 3 year old. I have celiac and we have kept him gluten free. We are going to get the gene test sometime this year. If it comes back positive, we'll keep him gluten free for a few more years and then do a gluten challenge to see how it affects him and proceed with further testing (antibodies, endoscopy) as needed.From: seamaiden399 <seamaiden399@...>Subject: [ ] Re: Help for diagnosing toddler Date: Tuesday, June 9, 2009, 10:04 AM

This is something that I'll have to think about as well... We're expecting our first in July.

You are correct- your daughter would need to be on a gluten diet for antibody blood tests to have any diagnostic value. If the genetic test comes back positive, you may want to consider a gluten challenge (for 3-6 months) and then have a blood test done. The gold standard of diagnosis with traditional doctors requires a gluten challenge, antibody blood testing, and then follow up biopsy if needed.

Good luck!

-

>

> Hi,

> I am trying to figure out if my 2-1/2 year old daughter has celiac disease. I have been raising her GF because it is easier for me because I am gluten free. Also, the times I have given her gluten it has seemed to cause her problems. The trouble is since she is on a gluten free diet, how do I get her diagnosed? I had the genetic test recently done and am waiting for the results.

>

> About a year ago she had a blood panel run and the doctor said all the tests were normal for celiac. She was GF at the time so I assumed the tests would be normal. Am I wrong?

>

> What advice do you have?

>

> Thanks!

>

[Guest guest]

I got the call yesterday that my daughter tested positive for the celiac gene.

I was told she has " DQ8. " I am waiting for the written report to see if there

is any additional information. I am wondering what to do now??? I think I'll

keep her GF and may consult a pediatric gastroenterologist. I may also try a

short gluten challenge this summer. What do you think?

Thanks for the advice and help!

>

> >

>

> > Hi,

>

> > I am trying to figure out if my 2-1/2 year old daughter has celiac disease.

I have been raising her GF because it is easier for me because I am gluten free.

Also, the times I have given her gluten it has seemed to cause her problems.

The trouble is since she is on a gluten free diet, how do I get her diagnosed?

I had the genetic test recently done and am waiting for the results.

>

> >

>

> > About a year ago she had a blood panel run and the doctor said all the tests

were normal for celiac. She was GF at the time so I assumed the tests would be

normal. Am I wrong?

>

> >

>

> > What advice do you have?

>

> >

>

> > Thanks!

>

> >

>

[Guest guest]

As I'm sure you know, having the gene doesn't mean she has or will ever

have celiac disease. She may develop it next year, in thirty years, or

never. So putting her on a gf diet seems, to me, to be unnecessarily

restrictive and unfair to her. It will set her apart from her peers and

make life much more difficult than it may need to be. I also think if

you want schools and camps and other organizations she may be a part of

to take her dietary needs seriously, it would help your child to have a

medical diagnosis. I know I'd be angry if my parents restricted my diet

severely " just in case, " when I didn't develop the disease until I was

40 years old.

Because you are aware that she may develop the disease at some point, I

would advise you to let her eat gluten but remain vigilant about

checking out any unexplained symptoms, whether they seem related to

celiac or not (many symptoms are related to vitamin deficiencies due to

the damaged intestine's inability to absorb nutrients, but you may not

see the clear connection). After a few months of so, have her take the

blood test for the antibodies. If that comes back negative, you might

consider having her tested every year (or every other year) just to be

totally on top of it.

Best,

Tristan

-----Original Message-----

From: and Steve Sinclair <slsinclair@...>

Sent: Wed, 10 Jun 2009 11:25 am

=0

ASubject: [ ] Re: Help for diagnosing toddler

I got the call yesterday that my daughter tested positive for the

celiac gene. I was told she has " DQ8. " I am waiting for the written

report to see if there is any additional information. I am wondering

what to do now??? I think I'll keep her GF and may consult a pediatric

gastroenterologist. I may also try a short gluten challenge this

summer. What do you think?

Thanks for the advice and help!

& gt;

& gt; & gt;

& gt;

& gt; & gt; Hi,

& gt;

& gt; & gt; I am trying to figure out if my 2-1/2 year old daughter has

celiac disease. I have been raising her GF because it is easier for me

because I am gluten free. Also, the times I have given her gluten it

has seemed to cause her problems. The trouble is since she is on a

gluten free diet, how do I get her diagnosed? I had the genetic test

recently done and am waiting for the results.

& gt;

& gt; & gt;

& gt;

& gt; & gt; About a year ago she had a blood panel run and the doctor

said all the tests were normal for celiac. She was GF at the time so I

assumed the tests would be normal. Am I wrong?

& gt;

& gt; & gt;

& gt;

& gt; & gt; What advice do you have?

& gt;

& gt; & gt;

& gt;

& gt; & gt; Thanks!

& gt;

& gt; & gt;

& gt;

[Guest guest]

Also, some people have only one copy of the Celiac gene and others have two.

Those with two (like me)- with a copy from both parents may have higher risk of

developing the active condition.

I don't know that I think it is such a big deal for a young child who has not

started school to be on a gluten-free diet. Personally, I have a gluten-free

household and do not plan to start baking with gluten even when our child is

born and eating solid food. This should not be a hardship for her, as the food

we have in our house is pretty darned good, if I do say so myself. I'm not

wild about a lot of the junky food marketed at children (both gluten and

gluten-free) and don't plan on making it a staple of her diet. I have been

diagnosed with Celiac since three and have not found it to be such a terrible

thing- it has not separated me from my peers in any way. What one eats does not

need to define who we are, unless we choose for it to.

That being said- I also am a strong advocate of pursuing a Celiac diagnosis for

children, especially in time for entering the school system. I think it is

important ESPECIALLY if they have Celiac to have as much certainty about their

diagnosis as possible so that they are not tempted to cheat. As they get older

they are more likely to question their parent's diagnosis and start making

decisions for themselves about what they consume. I had no doubts about my

Celiac and so I monitored my own food, even when I didn't eat exactly what my

mother would like me to. (junk food) I do agree that restricting the diet

unnecessarily, especially when the child is at restaurants, school, and other

social food situations, is not ideal. Also, doing a gluten challenge is easier

the earlier you do it- as she or he gets older and tests etc. become important

(unfortunately), if they do react to gluten it will be more inconvenient and

they are likely to have a more clear memory of the experience. However, I have

heard that it is best not to do it too early (1-2 1/2) as it may not be terribly

accurate. Once the child is on a gluten diet, it is undoubtedly a good idea IF

at least one parent or family member has Celiac or it is suspected, to have the

full antibody panel done yearly. It is a simple blood test and well worth

keeping an eye on things- because if Celiac is activated then of course you want

to have them on a strict gluten-free diet (and be able to impress upon them the

importance of this). I would definitely consult with a pediatrician gastro that

is familiar with Celiac and do a gluten challenge when it seems like a good time

to do so- but the shorter that challenge is, the less it is likely to result in

accurate test results or prove anything definitively. (Barring immediate

response, of course).

All this being said- it is also true that some people do not find results with

traditional testing even if gluten does make them ill, and that certainly can

pertain to children as well. If a gluten challenge does not yield clear results

but the child's health obviously deteriorates on gluten, then it may be

necessary to put them on a gluten-free diet. I just think it is worth it to give

traditional testing a shot first, and give it a fair chance for diagnosis.

Good luck and best wishes to all of you Mom's struggling with this! I know that

this issue will be something that I will be struggling with myself all too soon.

-

>

> As I'm sure you know, having the gene doesn't mean she has or will ever

> have celiac disease. She may develop it next year, in thirty years, or

> never. So putting her on a gf diet seems, to me, to be unnecessarily

> restrictive and unfair to her. It will set her apart from her peers and

> make life much more difficult than it may need to be. I also think if

> you want schools and camps and other organizations she may be a part of

> to take her dietary needs seriously, it would help your child to have a

> medical diagnosis. I know I'd be angry if my parents restricted my diet

> severely " just in case, " when I didn't develop the disease until I was

> 40 years old.

>

> Because you are aware that she may develop the disease at some point, I

> would advise you to let her eat gluten but remain vigilant about

> checking out any unexplained symptoms, whether they seem related to

> celiac or not (many symptoms are related to vitamin deficiencies due to

> the damaged intestine's inability to absorb nutrients, but you may not

> see the clear connection). After a few months of so, have her take the

> blood test for the antibodies. If that comes back negative, you might

> consider having her tested every year (or every other year) just to be

> totally on top of it.

>

> Best,

> Tristan

[Guest guest]

,

I have two boys and a husband

with celiac disease. When my oldest (now 18) was young he cried or was

irritable constantly, had frequent colds, vomited almost every time he ate,

never had a solid bowel movement, and had constant rashes. The doctors

told me he couldn’t have celiac disease (even though his father was

biopsy diagnosed) because he didn’t look like the starving babies from Africa

(they probably had CD too) and was in the 100th plus percentiles for

growth and weight. It took me two years of agony (on both of our parts)

to figure out on my own that they were wrong. There were no blood or

genetic tests at that time and the doctors refused to do a biopsy.

I had to make a choice to put

him on a GF diet without a medical diagnosis or watch him suffer. I chose

the GF diet without hesitation. Far better to choose the GF diet wrongly and

suffer a few social difficulties than to see him live life in pain and possibly

suffer lifelong physical damage. I decided that if he wanted to do a

gluten challenge, he could do so when he was old enough to understand the risks

and deal with the results himself.

Over the years, there have been

enough gluten accidents for him to never want to willingly consume gluten.

No school or other organization has ever questioned his need to be

gluten-free. He has not become a social outcast because of his

diet. He doesn’t hate me for not feeding him gluten (he laughed

when he read this). He says he thinks it is better to have been gluten-free

all along rather than have to start the diet as an adult. Perhaps he is

unusual; I have known other children who started the diet later in childhood or

as teens who struggled much more with the diet and the restrictions. My

12 year old son also handles his diet challenges very well (he loves Camp

Celiac!). Each child will respond in their own way, and you know your

child the best. I know that others have had different experiences and

opinions which are also valid; this is just another perspective to consider.

, you have a difficult

choice ahead of you. I am not a medical professional and cannot give you

any medical advice; the best I can do is share my experience and pass on any

information I think may help you. Ultimately you have to go with what feels

right for your child and your situation.

The symptoms my son experienced

were considered atypical at the time. I have known other children whose

gluten response was very different from his. Diagnosing CD from symptoms

is always tricky.

Should you decide to do a

gluten-challenge at some point, I would recommend you do so with care and

introduce gluten slowly, backing off if you see obvious distress. You

also need to know that there has been research showing that children who are

given a gluten challenge can develop associated autoimmune diseases.

Early diagnosis of CD can

prevent development of associated autoimmune disorders (diabetes, Hashimoto’s,

Sjogren’s, Grave’s, etc.) as well as prevent the bone loss and

dental enamel defects that can occur in untreated celiac disease. Untreated

Celiac disease in childhood can also result in loss of growth and other

maladies caused by malnutrition.

I would also recommend you do a

bit of searching on the web to get more information about testing for CD in

children and the usefulness of a gluten challenge. The links below will

get you started. The research can be hard to read, but you can usually

get what you need to know without reading and understanding every detail.

Having been where you are now,

, I know the path ahead is confusing and scary. I had no internet to

search and no other celiacs to consult; I would have given anything for the

resources available to you today (that’s why I started a support group).

I only know that if I had it all to do over, I would make the same decision

today as I did then.

, I wish you strength in and

wisdom in your quest for answers: follow what you know, sister…truth will

tell.

Pam Newbury

Santa Cruz Celiac Support Group

Here are links to some relevant

research:

http://www.jpgn.org/pt/re/jpgn/abstract.00005176-200905000-00009.htm;jsessionid=KwvJzYYXZnLtJ161ygd8kXlHLH781xSc2YQhjJrdsPpgp6F0Yh8h!-1260103914!181195628!8091!-1

http://gupea.ub.gu.se/dspace/handle/2077/15840

http://www.ncbi.nlm.nih.gov/pubmed/10419909

http://www.ajcn.org/cgi/content/full/79/1/148

I got the call yesterday that my daughter

tested positive for the celiac gene. I was told she has " DQ8. " I am

waiting for the written report to see if there is any additional information. I

am wondering what to do now??? I think I'll keep her GF and may consult a

pediatric gastroenterologist. I may also try a short gluten challenge this

summer. What do you think?

Thanks for the advice and help!

[Guest guest]

Our story, too, is different than many others. I agree with Pam that it's helpful to hear various experiences, and that ultimately you have to make your own choices. So for what it's worth, here is our story.Our son had behavior problems (hyperactivity, repetitive movements & vocalizations, emotional explosiveness, etc.) and a lifetime of anemia (which we first saw in his blood work when he was a year old), but no GI symptoms at all. We took him to specialist after specialist and finally it dawned on his pediatrician, when he was five, that occasionally celiac has no GI symptoms but shows up as behavior problems + anemia. He sent us to the pediatric GI doc at UCSF, who did the blood work. His ttg was unequivocally positive and she recommended the biopsy. She did tell us, however, that in kids this young biopsies can be negative, and

turn positive in a few years once more damage has been done. This was even more likely to be true in our son's case, since he didn't have GI symptoms.We struggled with whether or not to do an invasive procedure on a highly sensitive kid (who is terrified of doctors), when there was a good chance it would be a false negative. If the biopsy came out negative, would we keep him on regular diet that was possibly harming him, only to discover after more damage was done that he did in fact have celiac? In addition to the anemia, he had a huge number of cavities, despite great oral hygiene, and we wondered if he was experiencing enamel and bone loss. Auto-immune disease runs in both my family and my husband's, and I have the celiac gene, so we were scared about triggering other auto-immune diseases if we did not treat the celiac. Yet the GF diet would be a major life change for our son. We turned all this information over and over in

our heads until we talked to a friend who is a well-respected adult GI doc at UCSF.Our GI friend said that while many doctors talk about the biopsy as the "gold standard," that assuming this is true in all cases is an old-fashioned approach and that, while important in many cases, biopsies are not actually always useful. In our case, because our son had no GI symptoms yet was likely to have celiac (based on his unequivocal blood work and nutritional deficiencies, which we then knew were far more far-reaching than iron), our doctor friend said the best thing for us to do was to take him off gluten for a trial period. If his ttg went down, his iron went up, and his behavior issues changed, we would have our answer.After four months on the diet, our son's ttg was well below the threshold, and his iron levels had quadrupled. The majority of his physical/behavioral challenges had disappeared within the

first week of the diet. These things were enough of an answer for us.The pediatric GI was uncomfortable with this. She felt strongly that all potential celiac patients needed a biopsy. For us, her one-size-fits-all approach did not fit our child. My husband and I worked with her to come up with a compromise approach: to keep him on the diet, but, if he at any point later in life questions the diagnosis, he can decide on his own to do a gluten challenge and get a biopsy.Our son is seven, finishing first grade. It is certainly not always easy to be different than his peers. But he feels so much better in his body and mind that he often thanks us for changing his diet.Best of luck.Marci

[Guest guest]

That's a great note Marci. My son is also 7 and finishing first grade. His pediatrician did a blood test but it was negative.......but then I learned that not all labs do the test right. I am ttg confirmed celiac. So, I did my own gluten challenge for a week for my son when he was 4.5 - oh my word he was so sick at the end of the week. Since them we have been strictly gluten free occasionally when there are mistakes (was happening at school for a while), the primary symptoms for him are extreme silliness and lack of control. He can feel it, his teacher can recognize it and so do I. He doesn't like being different but he totally feels the symptoms and is very careful. This year a little girl in the class also got diagnosed and he told me that it felt so much better as he was no longer the only " different " one. BFrom: Sent: Thu Jun 11 08:30:56 2009Subject: Re: [ ] Re: Help for diagnosing toddlerOur story, too, is different than many others. I agree with Pam that it's helpful to hear various experiences, and that ultimately you have to make your own choices. So for what it's worth, here is our story.Our son had behavior problems (hyperactivity, repetitive movements & vocalizations, emotional explosiveness, etc.) and a lifetime of anemia (which we first saw in his blood work when he was a year old), but no GI symptoms at all. We took him to specialist after specialist and finally it dawned on his pediatrician, when he was five, that occasionally celiac has no GI symptoms but shows up as behavior problems + anemia. He sent us to the pediatric GI doc at UCSF, who did the blood work. His ttg was unequivocally positive and she recommended the biopsy. She did tell us, however, that in kids this young biopsies can be negative, andturn positive in a few years once more damage has been done. This was even more likely to be true in our son's case, since he didn't have GI symptoms.We struggled with whether or not to do an invasive procedure on a highly sensitive kid (who is terrified of doctors), when there was a good chance it would be a false negative. If the biopsy came out negative, would we keep him on regular diet that was possibly harming him, only to discover after more damage was done that he did in fact have celiac? In addition to the anemia, he had a huge number of cavities, despite great oral hygiene, and we wondered if he was experiencing enamel and bone loss. Auto-immune disease runs in both my family and my husband's, and I have the celiac gene, so we were scared about triggering other auto-immune diseases if we did not treat the celiac. Yet the GF diet would be a major life change for our son. We turned all this information over and over inour heads until we talked to a friend who is a well-respected adult GI doc at UCSF.Our GI friend said that while many doctors talk about the biopsy as the "gold standard," that assuming this is true in all cases is an old-fashioned approach and that, while important in many cases, biopsies are not actually always useful. In our case, because our son had no GI symptoms yet was likely to have celiac (based on his unequivocal blood work and nutritional deficiencies, which we then knew were far more far-reaching than iron), our doctor friend said the best thing for us to do was to take him off gluten for a trial period. If his ttg went down, his iron went up, and his behavior issues changed, we would have our answer.After four months on the diet, our son's ttg was well below the threshold, and his iron levels had quadrupled. The majority of his physical/behavioral challenges had disappeared within thefirst week of the diet. These things were enough of an answer for us.The pediatric GI was uncomfortable with this. She felt strongly that all potential celiac patients needed a biopsy. For us, her one-size-fits-all approach did not fit our child. My husband and I worked with her to come up with a compromise approach: to keep him on the diet, but, if he at any point later in life questions the diagnosis, he can decide on his own to do a gluten challenge and get a biopsy.Our son is seven, finishing first grade. It is certainly not always easy to be different than his peers. But he feels so much better in his body and mind that he often thanks us for changing his diet.Best of luck.Marci

[Guest guest]

Yes, our son has another celiac in his class too and it's such a relief to have another child with the same situation! We sometimes share bringing food/treats to birthday parties and school with the other child's family.I didn't mention the "extreme silliness and lack of control"--those things were huge for our son. He would get so crazed he'd fall off his chair during dinner. No longer.MarciOn Jun 11, 2009, at 8:39 AM, Bronwyn Syiek wrote:That's a great note Marci. My son is also 7 and finishing first grade. His pediatrician did a blood test but it was negative.......but then I learned that not all labs do the test right. I am ttg confirmed celiac. So, I did my own gluten challenge for a week for my son when he was 4.5 - oh my word he was so sick at the end of the week. Since them we have been strictly gluten free occasionally when there are mistakes (was happening at school for a while), the primary symptoms for him are extreme silliness and lack of control. He can feel it, his teacher can recognize it and so do I. He doesn't like being different but he totally feels the symptoms and is very careful. This year a little girl in the class also got diagnosed and he told me that it felt so much better as he was no longer the only "different" one. BFrom: Sent: Thu Jun 11 08:30:56 2009Subject: Re: [ ] Re: Help for diagnosing toddler Our story, too, is different than many others. I agree with Pam that it's helpful to hear various experiences, and that ultimately you have to make your own choices. So for what it's worth, here is our story.Our son had behavior problems (hyperactivity, repetitive movements & vocalizations, emotional explosiveness, etc.) and a lifetime of anemia (which we first saw in his blood work when he was a year old), but no GI symptoms at all. We took him to specialist after specialist and finally it dawned on his pediatrician, when he was five, that occasionally celiac has no GI symptoms but shows up as behavior problems + anemia. He sent us to the pediatric GI doc at UCSF, who did the blood work. His ttg was unequivocally positive and she recommended the biopsy. She did tell us, however, that in kids this young biopsies can be negative, and turn positive in a few years once more damage has been done. This was even more likely to be true in our son's case, since he didn't have GI symptoms.We struggled with whether or not to do an invasive procedure on a highly sensitive kid (who is terrified of doctors), when there was a good chance it would be a false negative. If the biopsy came out negative, would we keep him on regular diet that was possibly harming him, only to discover after more damage was done that he did in fact have celiac? In addition to the anemia, he had a huge number of cavities, despite great oral hygiene, and we wondered if he was experiencing enamel and bone loss. Auto-immune disease runs in both my family and my husband's, and I have the celiac gene, so we were scared about triggering other auto-immune diseases if we did not treat the celiac. Yet the GF diet would be a major life change for our son. We turned all this information over and over in our heads until we talked to a friend who is a well-respected adult GI doc at UCSF.Our GI friend said that while many doctors talk about the biopsy as the "gold standard," that assuming this is true in all cases is an old-fashioned approach and that, while important in many cases, biopsies are not actually always useful. In our case, because our son had no GI symptoms yet was likely to have celiac (based on his unequivocal blood work and nutritional deficiencies, which we then knew were far more far-reaching than iron), our doctor friend said the best thing for us to do was to take him off gluten for a trial period. If his ttg went down, his iron went up, and his behavior issues changed, we would have our answer.After four months on the diet, our son's ttg was well below the threshold, and his iron levels had quadrupled. The majority of his physical/behavioral challenges had disappeared within the first week of the diet. These things were enough of an answer for us.The pediatric GI was uncomfortable with this. She felt strongly that all potential celiac patients needed a biopsy. For us, her one-size-fits-all approach did not fit our child. My husband and I worked with her to come up with a compromise approach: to keep him on the diet, but, if he at any point later in life questions the diagnosis, he can decide on his own to do a gluten challenge and get a biopsy.Our son is seven, finishing first grade. It is certainly not always easy to be different than his peers. But he feels so much better in his body and mind that he often thanks us for changing his diet.Best of luck.Marci Marci RisemanPomegranate Design & Development, LLC1144 Guerrero StreetSan Francisco, CA 94110(415) 826-8860mriseman@...

[Guest guest]

The two stories about children on gf diets have one important thing in

common - both children exhibited symptoms, which went away on a gf

diet. In the first case, the child (now adult) was in the pre-test era,

so going gf was the only way to test for celiac. In the second, the

child did test positive through the blood tests. I think it is

completely reasonable to forgo a biopsy in a child - it seems

unnecessarily invasive and frightening. The blood test and subsequent

elimination of symptoms once on the gf diet point to a definite

diagnosis of celiac. The original poster's child didn't appear to have

any symptoms.

Unless/until medical science proves otherwise, I believe it is

unnecessarily restrictive to place a child who has no symptoms and

whose blood tests are negative on a gf diet " just in case. " My

pediatric gi and regular pediatrician recommend simply monitoring a

child who has the gene(s) and taking the blood test during their

regular yearly or biyearly checkups.

[Guest guest]

I agree that symptoms are definitely something that should inform a gluten-free

diet, and that simply having the gene is not enough. (Although it does get

complicated when someone has the gene, antibody levels and biopsy indicative of

Celiac but is asymptomatic- that individual should be on a gluten-free diet but

may be difficult to convince.)

As someone who went through the biopsy at a young age (three) who didn't like

doctors or needles, I would say that the biopsy is really the least of the

ordeal. If the child can sleep through the procedure, it's simply a brief nap

with little recovery time and relatively non-invasive. For me, the many blood

tests that the hospital took were far more traumatizing. So- I wouldn't hesitate

to recommend a biopsy, or have my child do it personally. Granted, the first

time it was a rather unpleasant experience because they didn't get the

medication right and I was awake throughout the procedure. However, the second

time when I had a repeat biopsy in 3rd grade, it was completely non-memorable

and didn't bother me at all. *shrug*

Different measures are right for different people, though, and I think listening

to your child's desires is important. If they are satisfied with the diagnosis

or self-diagnosis, then there shouldn't be problems. And, if later they want to

go through more extensive testing or challenges, then they can do that as well.

-

>

> The two stories about children on gf diets have one important thing in

> common - both children exhibited symptoms, which went away on a gf

> diet. In the first case, the child (now adult) was in the pre-test era,

> so going gf was the only way to test for celiac. In the second, the

> child did test positive through the blood tests. I think it is

> completely reasonable to forgo a biopsy in a child - it seems

> unnecessarily invasive and frightening. The blood test and subsequent

> elimination of symptoms once on the gf diet point to a definite

> diagnosis of celiac. The original poster's child didn't appear to have

> any symptoms.

>

> Unless/until medical science proves otherwise, I believe it is

> unnecessarily restrictive to place a child who has no symptoms and

> whose blood tests are negative on a gf diet " just in case. " My

> pediatric gi and regular pediatrician recommend simply monitoring a

> child who has the gene(s) and taking the blood test during their

> regular yearly or biyearly checkups.

>

[Guest guest]

’s first message on this topic (6/8) states that

whenever her child had gluten, it caused problems. This isn’t

specific, but it does sound like the child had symptoms of some kind when on a

gluten diet.

Pam

From:

[mailto: ] On

Behalf Of TrVerb@...

Sent: Thursday, June 11, 2009 12:15 PM

Subject: Re: [ ] Re: Help for diagnosing toddler

The original poster's child didn't appear to have

any symptoms.

[Guest guest]

hi everyone,

My husband has celiac diease. We are trying to decide what to do with

1) diet introduction and 2) testing for our 8 month old twins.

For those with experience testing for the celiac gene, can you share some info

on what tests to ask for and if insurance usually covers it? Where is the best

place (we live near Palo alto) to get the test done and ensure insurance

coverage (we have PPO)?

Thanks,

Judy

>

> 's first message on this topic (6/8) states that whenever her child had

> gluten, it caused problems. This isn't specific, but it does sound like the

> child had symptoms of some kind when on a gluten diet.

>

> Pam

>

>

>

> From: [mailto: ]

> On Behalf Of TrVerb@...

> Sent: Thursday, June 11, 2009 12:15 PM

>

> Subject: Re: [ ] Re: Help for diagnosing toddler

>

>

>

>

> The original poster's child didn't appear to have

> any symptoms.

>

[Guest guest]

Request a test kit from Kimball Labs. http://www.kimballgenetics.com/tests-celiacdisease.html

It’s a cheek swab test, so you don’t need to go to a

lab to get a blood draw – you do the test yourself and then mail back the

swabs to Kimball. You do have to put your doctor’s name on the forms. This

is a reputable lab with reliable results. There are not many labs in the

world which do this test at this point; Kimball is the only one in the USA (the

others are in Germany, Norway, and the Czech Republic) .

I don’t know for sure if your insurance will cover it

(some will, some won’t), but you can get the ICD-9 codes from Kimball and

then ask your insurance company if they’ll cover it. Where you get the

test done won’t matter to your insurance company. Kimball will

allow you the choice to pay directly, or they will bill your insurance for you.

We did this last August and it cost $395 per person (or close to that), and our

insurance paid part of this (after saying they’d pay it all…). We

also have PPO.

From:

[mailto: ] On

Behalf Of judy_smit88

Sent: Thursday, June 11, 2009 9:55 PM

Subject: [ ] Re: Help for diagnosing toddler

hi everyone,

My husband has celiac diease. We are trying to decide what to do with

1) diet introduction and 2) testing for our 8 month old twins.

For those with experience testing for the celiac gene, can you share some info

on what tests to ask for and if insurance usually covers it? Where is the best

place (we live near Palo alto) to get the test done and ensure insurance

coverage (we have PPO)?

Thanks,

Judy

>

> 's first message on this topic (6/8) states that whenever her child

had

> gluten, it caused problems. This isn't specific, but it does sound like

the

> child had symptoms of some kind when on a gluten diet.

>

> Pam

>

>

>

> From:

[mailto: ]

> On Behalf Of TrVerb@...

> Sent: Thursday, June 11, 2009 12:15 PM

>

> Subject: Re: [ ] Re: Help for diagnosing toddler

>

>

>

>

> The original poster's child didn't appear to have

> any symptoms.

>