Almost Five Year Old Pressing On Upper Thigh?>

[jkasmommy]

My daughter, who will be five in a couple of days, was recently diagnosed with a severe gluten and dairy intolerance.
We have NOT had her tested for Celiac's yet, because they doc wanted to try a total elimination after reactions to things the past four years.
Even when she was a baby, sitting in her carseat, she would stretch her legs out really straight, and kind of bounce up and down like she was in pain. We use to think it was stomach issues/constipation, but that was ruled out.. (we even went through almost every type of baby formula)
Now she has been Gluten free for the past four weeks (after trying to eliminate it over the past 12 weeks)
but she constantly will press on her upper left thigh, right below her hip bone.  When we ask her about it, she doesn't say its hurts, but she doesn't know how to explain it.  At one point, she said it felt like her leg was asleep, but she knew it wasn't asleep.
She does this a LOT throughout the day, every day.
Does anyone know why she may be doing this?
 

[kareng]

My daughter, who will be five in a couple of days, was recently diagnosed with a severe gluten and dairy intolerance.

We have NOT had her tested for Celiac's yet, because they doc wanted to try a total elimination after reactions to things the past four years.

Even when she was a baby, sitting in her carseat, she would stretch her legs out really straight, and kind of bounce up and down like she was in pain. We use to think it was stomach issues/constipation, but that was ruled out.. (we even went through almost every type of baby formula)

Now she has been Gluten free for the past four weeks (after trying to eliminate it over the past 12 weeks)

but she constantly will press on her upper left thigh, right below her hip bone.  When we ask her about it, she doesn't say its hurts, but she doesn't know how to explain it.  At one point, she said it felt like her leg was asleep, but she knew it wasn't asleep.

She does this a LOT throughout the day, every day.

Does anyone know why she may be doing this?

That's a real shame. Now, if you want to test her for Celiac, she will have to go back on gluten for an extended time. It would have been so easy for them to do the blood test......

[cyclinglady]

Welcome to the forum!

First, let me grumble......why did they not test her for celiac disease? Going gluten free to test is difficult. It's can take up to a year or more to have symptoms resolve. Going back on gluten can bring back gluten-related symptoms with a vengance.! The test is a simple blood test. Oh, well.

Neuropathies are common for those with celiac disease. This may be the cause of the thigh pressing. I will let others chime in as this has never come up before.

Lactose intolerance is common among those with celiac disease. That is because the enzyme to help digest lactose (milk sugar) is released from villi tips and is often the first to be damaged when the body starts attacking itself (intestinal wall) celiac disease is after all, an autoimmune disorder.

Here is a link to the University of Chicago's celiac website. It is very helpful!

Open Original Shared Link

Other intolerancescan develop and may not necessarily be related to celiac disease.

Good job on trying to find a solution to your daughter's health. Be persistent. No child should have to suffer.

[jkasmommy]

Thank you both,

I have no idea why they did not go ahead with the Celiac Testing. She went to TWO allergist.  The first one wouldn't do anything, so our Pediatrician sent us an hour and a half away to an Allergist/Immunologist who wanted to do an elimination diet first... The Celiac testing never even came up, and I am kicking myself for not pressing further into the "Why".

Welcome to the forum!

First, let me grumble......why did they not test her for celiac disease? Going gluten free to test is difficult. It's can take up to a year or more to have symptoms resolve. Going back on gluten can bring back gluten-related symptoms with a vengance.! The test is a simple blood test. Oh, well.

Neuropathies are common for those with celiac disease. This may be the cause of the thigh pressing. I will let others chime in as this has never come up before.

Lactose intolerance is common among those with celiac disease. That is because the enzyme to help digest lactose (milk sugar) is released from villi tips and is often the first to be damaged when the body starts attacking itself (intestinal wall) celiac disease is after all, an autoimmune disorder.

Here is a link to the University of Chicago's celiac website. It is very helpful!

Open Original Shared Link

Other intolerancescan develop and may not necessarily be related to celiac disease.

Good job on trying to find a solution to your daughter's health. Be persistent. No child should have to suffer.

[nvsmom]

 Doctors do this to so many people.  It really is a shame.  

 

If you do decide to test, the blood tests need 8-12 weeks of eating gluten and the endoscopic biopsy needs 2-4 weeks of daily gluten.

The blood tests are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA

AGA IGA and AGA IgG

 

Neuropathies could be causing that symptoms.  As Cyclinglady said, neuropathies caused by celiac disease can take months to years to resolve.  She may need to stay gluten-free a lot longer for that to improve if neuropathy is the problem.

 

I doubt this is applicable to your daughter but I'll mention it anyways. I have hip arthritis, and the pain moves down my thigh like what you describe; I'l often straighten my leg and massage it downward to try and shake the discomfort loose.  At her age, I am sure she doesn't have osteoarthritis, but if she gets small joint pain, or her pain is symmetrical, then you might want to check out the remote possibility of an arthritis like rheumatoid arthritis or lupus.  I highly doubt that is her problems though - I'm just responding based on my own personal experiences.

 

I also used to get the feeling that my leg was "dead". It started as a child and continued until a few years ago.  It didn't tingle, but had a low ache and felt removed from my body.  THAT sensation eventually disappeared with the gluten-free diet... I'd almost forgotten about it.  Could have been a neuropathy... not that I knew what it was at the time.  LOL

 

Best wishes to you and your little one.

[jkasmommy]

 Doctors do this to so many people.  It really is a shame.  

 

If you do decide to test, the blood tests need 8-12 weeks of eating gluten and the endoscopic biopsy needs 2-4 weeks of daily gluten.

The blood tests are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA

AGA IGA and AGA IgG

 

Neuropathies could be causing that symptoms.  As Cyclinglady said, neuropathies caused by celiac disease can take months to years to resolve.  She may need to stay gluten-free a lot longer for that to improve if neuropathy is the problem.

 

I doubt this is applicable to your daughter but I'll mention it anyways. I have hip arthritis, and the pain moves down my thigh like what you describe; I'l often straighten my leg and massage it downward to try and shake the discomfort loose.  At her age, I am sure she doesn't have osteoarthritis, but if she gets small joint pain, or her pain is symmetrical, then you might want to check out the remote possibility of an arthritis like rheumatoid arthritis or lupus.  I highly doubt that is her problems though - I'm just responding based on my own personal experiences.

 

I also used to get the feeling that my leg was "dead". It started as a child and continued until a few years ago.  It didn't tingle, but had a low ache and felt removed from my body.  THAT sensation eventually disappeared with the gluten-free diet... I'd almost forgotten about it.  Could have been a neuropathy... not that I knew what it was at the time.  LOL

 

Best wishes to you and your little one.

Is there anything that I could be doing, other than keeping her Gluten free, to help with the upper thigh pressing?   I wish she could explain better why she keeps doing it.  I had taken her to her pediatrician, who was out of the office and we had to see a different one, and he told me that he had no clue what it was...and went through along list of "it could be this, it could be that".. from a behavioral issue(wanting attention) to something that she may need to see a psychiatrist or neuro doctor for...

but at the end of the appointment nothing new was mentioned..........