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Celiac Without Many Digestvie Issues?

joint pain fractures vision changes abdominal pain mono ear infections

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#1 mom2allison

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Posted 08 January 2014 - 09:23 PM

Hello Everyone -

 

I am hoping for some feedback and answers.  I have a 12 year old daughter who is having blood work done to look for possible, Crohn's, Celiac, and/or Colitis. Tests ordered include CBC w/DIFF, ESR, ALKALINE PHOSPHATE, ALBUMIN, AMYLASE, BUN, CALCIUM, CREATININE, LIPASE, PROTEIN (TOTAL), SGOT (AST), SGPT (ALT), T4 (FREE), TSH, IMMUNOGLOBULIN; A, TT6 (or might say TTG), and IgA.  I really don't know what most of those are looking for, but hoping that they are sufficient.

 

Back in November she started complaining of low right abdominal pain.  The pain would come and go, and range from mild to so severe that she would feel like she was going to pass out, couldn't walk, and would be woken up from sleep.  After a few weeks of this continuing with no vomiting, or fever, doctor sent us for an abdominal and pelvic ultrasound. Results were normal. About 2 weeks later pain returned to the point of not being able to get out of bed.  I took her to the ER where they did another ultrasound, which showed nothing. Blood and urine tests showed no sign of infection. At this point her pediatrician referred us to GI, but said it could also be anxiety related.

 

Some health history:

 

She had 8 ear infections in first year of life.  She had tubes put in at 16 months and went 10 years without an ear infection.  She suffered from asthma pretty badly up until the age of 3, at which point it became resolved and has not used inhalers or breathing treatments since (though I am starting to think she might need it for exercise). Besides a few cases of strep throat in kindergarten, nothing too remarkable went on with her for the next few years. In 2011 she got swimmers ear for the first time, and now gets it any time she swims more than twice.  She has always been a bit of a drama queen, and would complain a lot about aches and pains that usually resolved themselves. In February 2012 she broke her foot during dance class. In January of 2013 she came down with mono, but didn't present typically and took 8 days for a diagnosis. She ran a fever for 12 days. From there things seem to have continued to be problems for her.  A week later she got her first ear infection in 10 years. Then in beginning of February she was diagnosed with patellar tendonitis.  At the end of February she developed posterior tibial tendonitis so severely that she was in a cast for 5 weeks and physical therapy for 3 months after that.  In March she got another ear infection. In September she fractured her foot running and was casted for 11 weeks on and off.  She also had a 5 week sinus infection.  In October she developed another ear infection, this time so bad she perforated her ear drum.  2 weeks later the other ear was severely infected, despite antibiotics. She just had tubes put back in her ears yesterday, as well as her adenoids removed with hopes of clearing up her ear issues. In December we were back at orthopedic doctor for her knee pain being so severe she could barely walk.  She is in physical therapy now 3 times a week to try and get that under control (and even tonight could barely walk because of pain).  Despite being a dancer for 10 years, she has quite significant muscle atrophy in her thighs, especially the one with the bad knee.  She complains a lot about back and hip pain, as well as random other joints, but mostly knee, back and hips.  She has also been having more frequent headaches, and a couple weeks ago complained of her vision suddenly being blurry. Turns out her vision changed 4 points (from .25 to 1.25). 

 

My question is, could any of this be related to Celiac?  From reading on the forum, it looks like joint pain isn't unheard of, but wasn't sure if that would include tendonitis. Her digestive issues besides the recent abdominal pain are severely gassy (seriously the gassiest kid our family has ever seen) nausea, and frequent bowel movements (two to three times a day, but not diarrhea). I know I won't know anything for sure until we get the blood work back, and I am really hoping that it is all negative. But the more I read on here, the less I am sure.

 

Sorry this is so long, I am just at my wits end on what to do with my child. It seems like something is always going on with her. Any feed back, ideas, or suggestions are welcomed.

 

~Melissa~

 


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#2 NoGlutenCooties

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Posted 09 January 2014 - 06:15 AM

Hi Allison's Mom - and Welcome to the Forum!

 

The short answer is that just about anything could be related to Celiac.  There are literally hundreds of possible symptoms, all of which have other possible causes.  That said, your daughter's symptoms do not sound outside the realm of potential Celiac - or non-celiac gluten intolerance.  I know as a kid I also had several ear infections and broke both eardrums more than once.  Was it because of Celiac?  I really don't know - I wasn't diagnosed until just recently and I'm 42 now.

 

I also did not have any digestive symptoms even though my endoscopy and biopsy showed moderate to severe villi damage.  Many Celiacs are asymptomatic.  I had some mild bloating from time-to-time, but what woman doesn't?

 

It's good that your doctor is testing for Celiac (that's the TTG and IgA tests).  Keep in mind that it is not all that uncommon to get a false-negative on the test.  Also, do not believe your doctor if they try to tell you that she is a "weak positive".  I don't know where they get that - to me it's like saying you're "weakly pregnant" - you either have Celiac or you don't.  So insist on getting a copy of the blood work results so you can see the numbers for yourself.  You can always post them here and someone can usually help you to figure them out.

 

Good luck!


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#3 frieze

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Posted 09 January 2014 - 06:25 AM

well, mom, she may not be that drama queen you call her.  and the blood tests you list are not the whole panel. someone will be along to list that for you.  breaking bones like that is just not normal, nor is tendonitis.  is she small for her age?  if she is menstruating, is the pain at mid cycle, or all over the place? time wise.


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#4 pricklypear1971

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Posted 09 January 2014 - 06:33 AM

I never had obvious go symptoms I related to what I are. They were random and far apart - weeks, months. I always thought I was prone to stomach viruses. I had oddball stuff that in retrospect, now makes sense.

Anyway, I'm responding to let you low they are not thoroughly screening for Celiac OR thyroid (the TSH and free t4 are thyroid tests).

The danger in incomplete screening is that they may pronounce her negative when complete testing may find positives.

For thyroid you need to add free t3, reverse t3 and thyroid tpo antibodies. You could also add other thyroid antibodies for hyperthyroidism - but free t3 and rt3 are definitely needed. Free t3 and free t4 need to be at the halfway mark, minimum. TSH is irrelevant, but your doctor will probably look at it as the holy grail. Better thyroid docs would want it 2 or lower, when not on meds.

As far as celiac tests, I'd read these fact sheets from the University of Chicago about tests and testing. Print and give to your docs if needed.

http://www.curecelia...ide/fact-sheets
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#5 mom2allison

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Posted 09 January 2014 - 07:28 AM

She is not small for her age. As a baby she was labeled as failure to thrive because over a 2 month period she gained no weight, and actually lost half a pound.  After a lot of testing it was determined she had a bladder infection. By the time she was 5 she was the same size as her peers.  But now she is taller than most.  She is almost 5'5" and 128 pounds (just turned 12 in November). She started cycles in March of last year.  The abdominal pains that started in November seem to be inconsistent with her cycles, she has had them from beginning of one to the beginning of next at times. Her period itself doesn't seem to cause her any significant discomfort/problems except for one time over the summer.

 

The fractures and tendonitis is concerning to me.  People can't believe how often this kid has had issues and joke around asking what is wrong with her.  I never thought it could be that Celiac would be causing these issues, or that there was actually any one thing leading to this other than clumsiness/bad luck. Her doctor did mention last year with her tendonitis in her foot that it was very rare to have a child have such severe problems with it. But now I am wondering if there could be an answer to her issues. 

 

Obviously I won't know more until I get her blood work back (which I have to take her today to get redrawn because there was a mix up with the courier service).  I will request a copy of the results and let you know what I find out, and see if I should have more tests done.

 

Thanks for all of the feedback so far.  It is appreciated.


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#6 1desperateladysaved

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Posted 09 January 2014 - 08:41 AM

I think you are on the right track listening and trying to help your child.  I would have her fully tested for celiac.  The final test would be to gluten free and see if it changes anything.  I hope you get to the root of the problem soon.

 

D


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#7 GottaSki

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Posted 09 January 2014 - 08:50 AM

Welcome Melisa and Allison!

 

While each of her symptoms throughout her health history could be attributed to many conditions, I can tell you ALL of them can be caused by Celiac Disease.  The malabsorption of nutrients caused by Celiac can effect any system in the body.

 

Personally, I had many of her symptoms as a child including severe inner ear and tendon/ligament issues.  I was not a small child, 5'6" by 12 and started my period at 11.  Unfortunately my moderate symptoms worsened throughout decades while multiple doctors were either dismissive or misdiagnosed me until I was 43.

 

I'm not saying she has Celiac....simply don't dismiss the possibility.

 

Just my guess, but she likely is not dramatic, rather she has been consistently in pain that is her "normal" and complains when it gets worse.

 

In addition th the Total Serum IgA and tTG-IgA ... I strongly encourage you to have the following:

 

tTG-IgG

DGP-IgA

DGP-IgG

EMA-IgA

 

Additionally...the list you included has nothing to determine if she is deficient in nutrients -- which can cause all of her symptoms.

 

CMP - Complete Metabolic Panel

B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

Do not remove gluten until all testing is complete.

 

I do hope you find answers soon...hang in there :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 patientadvocate

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Posted 09 January 2014 - 09:01 AM

mom2Allison,

 

I am a 4th year medical student about to graduate with an MD in May, 2014. Let me start by saying that my advice in no way replaces or  trumps that of your child's physician, but may serve as another set of eyes. Please continue with her GI work-up and follow all directions from your home physician.

 

I will also add, PLEASE do not let anyone tell you her abdominal pain and other symptoms are solely due to anxiety. After reading her story, I may be able to explain all of her symptoms with two interrelated diagnosis. Without knowing your daughter or having the ability to perform a physical examination, I must make some assumption. Allow me to explain.

 

This diagnosis is based off of one assumption from your daughter's social history of being a dancer- I am assuming that she is highly flexible and has always been flexible, otherwise she would not have had such success in the art. Taking into consideration likely hyperflexible joints, joint pain (hip/back/knee), tendonitis in multiple joints and traumatic fractures, and myopia (near sightedness), I believe she may have one of two likely things: Benign joint hypermobility syndrome (JHS) or Ehlers-Danlos Syndrome (EDS).  Much less likely and probably would have been picked up by docs already are Marfan's syndrome and Juvenile rheumatoid arthritis.

 

JHS and some subtypes of EDS are very difficult to distinguish from one another which is why I will talk about them as one package and leave it up to your physician to diagnose and distinguish. Both are disorders of collagen, a protein which forms connective tissue in the body including tendons, ligaments, skin, etc. Disordered collagen allows for very flexible joints, easily injured tendons, and the things I mentioned above. Here is a great article on JHS which hopefully is not too technical for you.

http://www.jaoa.org/.../106/9/531.full

 

You are probably wondering if I forgot about her horrible abdominal pain, GI symptoms, feeling like "passing out," and headaches!  I have two possible explanations for this:

 

1) JHS and EDS can cause laxity in the pelvic floor muscles and rectum, eventually leading to uterine or rectal prolapse (which I'm assuming your daughter does not have because she is very young and she was examined and had 2 ultrasounds) But they can cause pelvic pain prior to prolapse due to general myalgias and a weak pelvic floor. Also JHS and EDS can cause severe jaw pain that radiates into the head causing frequent headaches (TMJ dysfunction)

 

2) JHS and EDS can be associated with a form of dysautonomia (disorder of the autonomic nervous system) called POTS (postural orthostatic tachycardic syndrome). POTS can cause MANY things, but most specifically, a fast heart rate with anxious/dizzy feeling upon standing along with a drop in blood pressure, and dysfunction or pain in ANY organ that is regulated by the autonomic nervous system. Examples: heart--> chest pain/palpitations, stomach/GI tract --> pain, IBS, diarrhea, constipation, decreased/slowed emptying, nausea, bloating, central nervous system --> dizziness, fatigue, depression, anxiety, sleep disturbance, headache, Bladder --> pain, urinary problems, OB/gyn --> painful menses, low blood pressure during menstruation, Endocrine --> low blood sugar. Without knowing more about your daughter's history, her vitals, and physical exam, it is difficult to say, but mononucleosis is one of the common triggering infections/events for the onset of POTS.

the wiki article on POTS is easy to read and a good start: http://en.wikipedia....cardia_syndrome

 

Her ear infections may be unrelated and are fairly common in children unless your doctor thinks otherwise or unless some of her labs come back positive. If she has had ANY skin rashes, profound weight loss without trying, or positive inflammatory or rheumatologic laboratory results in her past or recent history, ignore everything I said above.

 

If the GI doc does not find Crohns, UC, Celiac, you may want to consult a rheumatologist or orthopedist who specializes in JHS.

 

This is a MAYBE since I don't have enough information about your daughter:

IF you suspect that your daughter could have POTS (she MUST have the cardiac symptoms and at some point complain of fast heart rate and/or feeling like she is going to pass out/low blood pressure/ black out) you should have your pediatrician do blood pressure and heart rate both lying down and standing (orthostatics), and if the heart rate increases by 30 upon standing OR the heart rate is greater than 120 upon standing OR the blood pressure decreases upon standing OR the pediatrician says so, please see a pediatric cardiologist who specializes in dysautonomia (that is presuming she has JHS).

 

I wish you the best of luck!!!


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#9 IrishHeart

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Posted 09 January 2014 - 09:33 AM

She is not a drama queen if she is reporting pain to you. (Trust me, I know drama queens lol )

 

I had leg pain as a child and all sorts of infections, crazy pains and "tummy bugs" and if my parents

had known about the possibility of celiac, it would have saved me a lifetime of crap health and complications.

 

Your poor kiddo has been through a lot. A perforated ear drum is excruciating.

 

I was also a dancer for 15 years, but my muscles always felt sore and my bones hurt.(still do because of OA) but I never excelled as sports because I had no stamina.

 

No 12 year old is "anxious" without cause. That's the ridiculous thing I have ever heard. 

It's bad enough when grown ups are dismissed with that malarkey, but a kiddo? bah!

 

Gluten can cause anxiety, too and your doctor would be best served to learn a bit about the ramifications of gluten intolerances before dismissing any one of his young patients with that kind of attitude.

 

This makes me angry, truth be told. Not at you, at him.

 

Hang in there, Mom--and please, keep pursuing what is making your girl so ill.

She's not making it up. 


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"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

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"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 "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


#10 kareng

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Posted 09 January 2014 - 09:36 AM

Wow!  Don't know what to say to that diagnosing from a forum question.  I guess those are some things your doctor could look at.

 

Back to the original question.  Celiac doesn't have to be a "stomach" issue.  But it sounds to me like she does have GI issues -pain, gas, etc

 

http://www.curecelia.../guide/symptoms


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#11 mom2allison

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Posted 09 January 2014 - 09:51 AM

Although she danced for so many years (is out this year due to all the injuries and illnesses) she is not very flexible. She always struggled in the tumbling classes, even though she wanted so badly to be good at them. Also, all of the times she felt she was going to pass out was directly related to when she was having severe abdominal pain. I will keep those other things in mind if her blood tests show nothing.  She was tested for rheumatoid factors about 6 months ago and everything came back normal with that.

 

I don't necessarily think she was making up the pain, just that she was always complaining about little pains that seemed to go away pretty quickly.  She mentioned stuff so much with no trauma that it was hard to know when something was actually wrong.  After the first fracture to her foot, that gave us a guideline on how to base her pain level and know if it was severe enough to warrant further testing.  Most times she just has general aches and pains.

 

Looking back now, I remember the last two years in school, last year especially, she would call constantly after lunch and complain of stomach aches.  I chalked a lot of it up to stress with a very rough school year, and eating school lunches that were more fatty and greasy than food we normally ate.  Now I am wondering if it is all related.  She is homeschooled this year, so isn't eating any school lunches, and we don't seem to have many issues with lunchtime now.  But she still does get nauseas quite a bit, but never actually throws up.


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#12 IrishHeart

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Posted 09 January 2014 - 12:18 PM

All those antibiotics you mentioned she was administered....have you replenished her gut bacteria with some probiotics?

 

Doctors push the antibiotics,  but fail to suggest balancing the gut flora with the "good guys".

Creates a world of trouble in the gut, and then the entire body.

 

Dr. Fasano thinks this is a part of the problem with people's ill health and so do I.  It sure made my gut a mess when I was treated repeatedly with antibiotics when they could think of nothing else to resolve my constant bowel issues. Symptom-treating is ineffective if gluten is the underlying instigator.

Just a suggestion.

 

 

"General aches and pains" are a sign that something is very wrong and frankly, it can be very tiring and

depressing for an adult, so I am sure she's feeling pretty bad...and getting to the bottom of it is crucial to her well-being. (but you already know this).

Keep pressing for answers, Mom. Please. 


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"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 "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


#13 mom2allison

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Posted 09 January 2014 - 12:25 PM

She was on antibiotics for 2 weeks for her sinus infection.  Shortly after that she started having some diarrhea but nothing horrible.  Then 3 weeks later she was on antibiotics again for another 10 days for her ear infection and was having more frequent diarrhea.  At that point we started her on probiotics as well as eating Activia daily. Stomach issues seemed to clear up after that as far as the diarrhea is concerned, but it was about a week after finishing her last antibiotic that the severe abdominal pain began.  So far we haven't been able to find a link.  We just got back from the doctors for the blood draw, and they are going to call me as soon as the results are in so I can pick up my own copy and they will fax it to the GI doctor.


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#14 bartfull

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Posted 09 January 2014 - 12:48 PM

When I was a kid I accused my Mom of being a hypochondriac because she was ALWAYS complaining about different things. One day it would be a headache, the next day it was a backache, the day after that her ankles hurt. Mom was also a "nervous type". She complained about exhaustion. Every day it was SOMETHING. I thought she was just looking for attention.

 

Turns out Mom had had celiac all her life and it wasn't until she was in her 50's that she was FINALLY diagnosed. By then she had so much damage that she never really healed and had to have vitamin injections for the rest of her life.

 

And now I have celiac too. The very FIRST thing I do when I get to Heaven is apologize to Mom for doubting and disrespecting her.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#15 mom2allison

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Posted 09 January 2014 - 07:37 PM

Bartfull - Your mother sounds exactly like my daughter.  Pretty much every day she is having some kind of pain. Maybe not all day, and maybe not severe, but something is always bothering her.  I don't think she is making it up, but I do sometimes think she uses it as an out for doing things she doesn't want to.  Usually I can tell the difference though. The last 2 days she has been having some really severe knee pain and trouble walking.  She sees her physical therapist tomorrow, so hopefully that will offer some relief.  Today she has also been having the low right abdominal pain as well as a really bad stomach ache.  Add to that the pain from her surgery Tuesday and she is feeling pretty lousy and defeated today. Regardless of what her diagnosis is, I just hope we can get to the bottom of what it is and move forward with helping her feel better on a daily basis.


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