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Celiac Without Many Digestvie Issues?
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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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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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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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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.cureceliacdisease.org/living-with-celiac/guide/fact-sheets

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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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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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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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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/content/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.org/wiki/Postural_orthostatic_tachycardia_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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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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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.cureceliacdisease.org/living-with-celiac/guide/symptoms

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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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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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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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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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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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  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.

 

 

But, I am not sure how you can tell the difference, honestly.

Pain is pain, intermittent or constant. I know, I live with it. I put my game face on often so my wonderful husband does not have to worry about me.  It has gotten much better since my diagnosis, but left untreated for a lifetime, some things may be irreversible. I have OA and connective tissue damage.and I have PT and MT to rehab my body.

 

Your daughter may be treating the symptoms of her pain on this regime she is on, but if her body is being damaged by malabsorption, it is still in constant inflammation. Inflammation causes pain.

 

She sounds as if she is trying to do everything she can to rehab, but if her bones, joints and muscles have been adversely affected by 

malabsorption, they do not work properly. The pain is horrible. And yes, some days are better than others.

When muscles and connective tissues are damaged, the pain from just walking is pretty intense.

 

Sorry to sound so firm in my response, but if someone does not live with musculoskeletal pain, it's impossible to imagine how debilitating and discouraging it is, no matter how empathetic a person may be. 

 

You say you do not think she is making it up. If  you believe she really is in pain, then how can she be  "using it"?. Perhaps she does not want to exacerbate the pain by doing more things?

She probably feels like crap and if she says she doesn't feel like doing something, it's because of real pain and/or depression from dealing with the pain.

 

At least, that's what I take away from your descriptions of her ordeal thus far.Just my opinion based on that info.

 

If her celiac panel comes back negative, I hope you will consider that gluten may very well be a factor. Non-celiac gluten sensitivity can cause similar problems in children. If she doesn't have some evidence of osteopenia or osteoporosis, I'll be very surprised.

Children do not break bones like that without an underlying cause.

 

 

http://www.thepatientceliac.com/2013/11/22/non-celiac-gluten-sensitivity-in-children/

 

This is just my opinion, of course. Feel free to disregard it. I'm not a doctor. I'm just someone who shares your daughter's symptoms.

I broke a toe once just sitting on the couch (not kidding--long story) and had 2 shoulder surgeries.

I have broken my ribs, a finger, torn the ligaments in my ankle and spent more time in PT, MT and on chiropractor tables than I care to remember. Saw every rheumatologist, orthopedic doctor and spine specialist I could for years...by the time I was diagnosed at 53, I could barely walk...and the answer turned out to be: damage from celiac and malabsorption.  

 

Off gluten, and I am feeling better than I have in 25 years. I even go to the gym now.

My point? I do not want your daughter to wait 40 years to feel better,

 

 

I sincerely hope you can find answers for your daughter so she can go back to school, back to dancing and playing sports and living her happy, healthy young life. Best wishes to you!

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I live every day in pain. Sometimes it is bad, sometimes not so much. It is much improved on a gluten free diet since my diagnosis but it isn't better enough to live a normal life yet.

 

It is possible that someone would accuse me of using my pain to not do things I don't want to do. There isn't just pain, pain makes you tired. It is exhausting beyond what anyone who doesn't suffer with it can imagine to be in constant pain. This leaves only so much energy for life and activities. On bad days, this leaves me turning down opportunities to do things I want to. On okay days, I carefully calculate doing what I want and denying activities I simply find distasteful. (That might even mean I don't do my dishes every day.) And on my good days, I still limit how much of myself I give to things I do that are necessary, but that I don't enjoy because I know that doing them will tire me and cause more pain.

 

Quite simply, I enjoy things like trips to the zoo. No matter how taxing, and that I know that they will cause pain and discomfort, I still go on occasion. I am repaid that pain in joy. On the other hand when it comes to things like my doctor's visits or chores, no, I don't want to do them. I'm going to be caused pain and discomfort by the activity but gain nothing enjoyable from it. And this isn't just me. This is the same story over and over from people who suffer with chronic pain.

 

Hopefully there will be answers from the GI. It really doesn't sound at all inconsistent with celiac, and a simple diet change is so much easier to manage than something that requires pills and all that nonsense.

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I definitely didn't mean to offend anyone by saying that sometimes I thought she was using it as a way to get out of doing something she didn't want to do. I do not know what it is like to live with pain everyday, that is true.  And I don't wish that on anyone, especially my daughter. 

 

The biggest struggle outside of health related issues that I have with my daughter is her school work.  She flat out does not enjoy school.  And there are many days where she will be playing around or doing other things, and as soon as I tell her it is time to sit down and work on school it seems like I have turned a switch on for her to suddenly be in pain (usually with her side/stomach hurting) where she says there is no way she can possibly sit and do school and must go lay down in bed. It would be one thing if I was asking her to do something that required more than sitting on the couch, or if she had been complaining about any pain before that, but when it is so suddenly and with something she dislikes so much it makes it difficult.  I don't want to ever doubt that she is feeling the way she says she is, but it is difficult when it comes to school work and her pain.  I don't know if that makes sense or not.

 

My guess is that stress could be causing her pain to become worse? But school work must be done.  So where do I draw the lines and set  boundaries? As it is she has already been pulled from school this year and is doing on online/homeschool program. Which is a blessing, because she would never have passed this year in public school with all the days she would have had to miss for doctors appointments.

 

Again, I really didn't mean to offended anyone and I hope you accept my apology if I did. I just hope that I get to the bottom of what ever it is that is causing this pain so we can begin to move forward.

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I definitely didn't mean to offend anyone by saying that sometimes I thought she was using it as a way to get out of doing something she didn't want to do. I do not know what it is like to live with pain everyday, that is true.  And I don't wish that on anyone, especially my daughter. 

 

The biggest struggle outside of health related issues that I have with my daughter is her school work.  She flat out does not enjoy school.  And there are many days where she will be playing around or doing other things, and as soon as I tell her it is time to sit down and work on school it seems like I have turned a switch on for her to suddenly be in pain (usually with her side/stomach hurting) where she says there is no way she can possibly sit and do school and must go lay down in bed. It would be one thing if I was asking her to do something that required more than sitting on the couch, or if she had been complaining about any pain before that, but when it is so suddenly and with something she dislikes so much it makes it difficult.  I don't want to ever doubt that she is feeling the way she says she is, but it is difficult when it comes to school work and her pain.  I don't know if that makes sense or not.

 

My guess is that stress could be causing her pain to become worse? But school work must be done.  So where do I draw the lines and set  boundaries? As it is she has already been pulled from school this year and is doing on online/homeschool program. Which is a blessing, because she would never have passed this year in public school with all the days she would have had to miss for doctors appointments.

 

Again, I really didn't mean to offended anyone and I hope you accept my apology if I did. I just hope that I get to the bottom of what ever it is that is causing this pain so we can begin to move forward.

 

I don't think you offended anyone...it is more a matter of we can relate to what your daughter may be feeling.  That you are looking for answers is the most important thing.

 

The good news IF this is Celiac Disease is that dietary changes may turn your daughter into a happy, healthy, energetic kid.  Won't say it will cure the "I don't wanna(s)", but with improved health many difficult situations improve.

 

Hang in there :)

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I definitely didn't mean to offend anyone by saying that sometimes I thought she was using it as a way to get out of doing something she didn't want to do. I do not know what it is like to live with pain everyday, that is true.  And I don't wish that on anyone, especially my daughter. 

 

The biggest struggle outside of health related issues that I have with my daughter is her school work.  She flat out does not enjoy school.  And there are many days where she will be playing around or doing other things, and as soon as I tell her it is time to sit down and work on school it seems like I have turned a switch on for her to suddenly be in pain (usually with her side/stomach hurting) where she says there is no way she can possibly sit and do school and must go lay down in bed. It would be one thing if I was asking her to do something that required more than sitting on the couch, or if she had been complaining about any pain before that, but when it is so suddenly and with something she dislikes so much it makes it difficult.  I don't want to ever doubt that she is feeling the way she says she is, but it is difficult when it comes to school work and her pain.  I don't know if that makes sense or not.

 

My guess is that stress could be causing her pain to become worse? But school work must be done.  So where do I draw the lines and set  boundaries? As it is she has already been pulled from school this year and is doing on online/homeschool program. Which is a blessing, because she would never have passed this year in public school with all the days she would have had to miss for doctors appointments.

 

Again, I really didn't mean to offended anyone and I hope you accept my apology if I did. I just hope that I get to the bottom of what ever it is that is causing this pain so we can begin to move forward.

 

The amazing thing about doing fun things, is that while they do nothing to stop the pain, or prevent the pain, and can even make the pain worse, while doing them they take your mind off of the pain. For me, I have pain even while sitting in one of my legs. I'm also a gamer. When I get engrossed in a good game I can forget how much pain I am in. But when I am done it will hit me like a ton of bricks. I'm not saying this is what is happening with your daughter, but it is a distinct possibility.

 

I'm sure that it seems like she's shirking to you. And you may be very frustrated. Instead of making the situation frustrating for both of you, she is plenty old enough to help tackle things like a schedule with you. It is normal for children her age to start resenting being outright told when and how to do things, and struggling with pain will only make that worse. Setting up a plan to tackle school in small chucks throughout the day and remaining flexible with it may be a good way to go. Maybe if she's a music nut having music while she studies will help, it can be a way to keep part of her mind from focusing on pain without being a terrible distraction. She may be able to do more one day and less another, but since she isn't showing up to a class every day and is doing an online/homeschool program that shouldn't be a problem and there should be a lot of flexibility that suits her needs.

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We are looking at a better schedule/plan for the next semester.  It has just been hard to stick to our original one for this semester with the amount of doctors, orthodontist, ER visits, and physical therapy appointments she has had. As well as surgery. (30 visits all together) She has gotten behind and is in the final week of the semester now and playing major catch up.  Thankfully we have made a lot of progress these last few days, but now she is in horrible pain tonight with her side again, as well as pain in her ears and throat from the surgery and barely able to do work. I called her doctors office this morning to see if the results of the blood work were in yet so I could go pick them up, but they said not yet.  Hopefully Monday, but Tuesday at the latest. I am very anxious to get the results.

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Let me begin by telling you how sorry I am that your daughter is struggling with these mystery ailments. As someone who has a "rule out" disorder herself for the past 25 years, Fibromyalgia, I know how frustrating some of these situations can be.

You mentioned that your daughter recently had "mono". I wonder if she actually had Mononucleosis or if she might have had the Epstien-Barr virus. I am not a doctor, but it is my understanding as a patient that if she had Epstien-Barr you would be able to see a titter of the virus left behind in her CBC, if you add an Epstein-Barr titter request to your lab draw. Just ask her doctor. The higher the number, of course, the more active the virus still is. Again, as I understand it, the aftermath of Epstein-Barr can be either Fibromyalgia: diffuse body aches with hallmark trigger points and fatigue, or Chronic Fatigue Syndrome: overwhelming fatigue with diffuse body aches. Yes, they do overlap and there are other symptoms.

Also, one of the other responders posted about Benign Hypermobility Syndrome. I would like to tell you that I am a former dancer. I studied ballet as a child for 10 years. My rheumatologist told me that dancers and gymnasts quite commonly have BHMD, basically it just means they can overstretch some or all of their joints. This may be great for flexibility and graceful movement, but it wears then supportive structures out sooner than they were intended to be used. Think of pulling a rubber band as tight as you possibly can. Now, do it again. And again. How many times can you stretch one rubber band as tight as you possibly can before it has been over-stretched?

TMJ and migraine headaches are also considered comorbid conditions.

So. In conclusion, I am so sorry that your daughter is going through all of right now. But, I'm so proud of you for trying to get her a correct diagnosis for her at the age of 12 so she hopefully won't end up like me, 49 and still trying to get a correct diagnosis.

Good work, Mom!

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Diagnosed in 95, never really had any stomach problems so like an idiot I continued to consume gluten items. 2012 - a whole new story. My antibodies went haywack and i stated losing weight, still no pain or discomfort. I went to see a GI Doctor as a last resort and he confirmed gluten intolerance, scoped my GI tract and stomach and told me if I hadn't gone in to see him, I would have died within 3 months. The lining of my stomach was 50% gone. 

So this time i listened to the Dr. and feel much stronger and better now on a gluten free diet.

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When she had the mono last year, they did a mono test and it came back positive.  They repeated the test a couple weeks later and checked for the mono titter and it had come down significantly.  So I am guessing it was mono and not Epstein Barr. Her body aches began even before the mono did, this has been an ongoing issue for a couple years, though it is more frequent now.

 

gluten-free-Rick , that is scary how much it had damaged the lining of your stomach without having any pain or discomfort.

 

I called the doctor yesterday to see if her results were in yet and they said they would be today.  Called today and found out that she needs to come in and have one of the tests redone (THIRD TIME NOW!) because the blood clotted.  So tomorrow I have to go take her in for another draw so they can do here CBC and sedrate I believe.  The rest of the results will be available at that time for me to pick up.  She is less than happy about the thought of having to get this done yet again.  I warned her that this may very well not be the last blood draw she has done, depending on the results.  Fingers crossed we get some insight and answers tomorrow.

 

If she does end up having Celiac it could explain a lot of the issues others in my family have.  I remember going to the doctor when I was not much older than she was because I would constantly be sick to my stomach and have diarrhea after I ate.  The doctor did blood work as well as a stool sample, but never really found anything.  Of course I have no idea what they checked for, and had never heard of Celiac until maybe 7 years ago.  Most of my family has self-diagnosed themselves with IBS, which reading on here seems to be not an actual answer to anything.  My stomach problems have cleared up a lot in the last 20 years.  But if I eat things that are greasy or have a lot of cheese in them, I am sick within an hour.  Same goes for all 3 of my sisters. I don't seem to be affected by regular diary (yogurt, non melted cheese, ice cream, etc.) or bread in general that I can tell. I don't drink milk.  My youngest sister has bad reactions to pretty much all dairy.

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It's not unusual for any of us to start looking at our health histories and those of our family members and see a pattern. Lots of things make sense when we put it all together. I was told I had "IBS" and GERD for over 12 years. Treatment failed. It was celiac all along and now, I have neither of those horrible conditions.I take no medications at all.

 

You started the thread with the question of: can it be celiac  "without many digestive issues"", but I can't help but notice that you wrote

she has abdominal pain, severe gas, nausea, and frequent bowel movements (two to three times a day, but not diarrhea).

 

Those seem like a lot to me, but really, some people never had any at all...and they were stunned to find they had celiac. 

 

We are all hoping you get answers; not just for Allison, but for you as well. It can't be easy watching your child in pain and going from doctor to doctor looking for an explanation (we've all been there too).

 

Keep us posted. We care!

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    • Depression / anxiety issues
      Hi all.  Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday 
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    • No actual diagnosis/genetic results.
      Hi- new here but have been reading a lot of posts (Long post, last two paragraphs have actual question)  my four year old daughter probably has celiac but I don't know if I'll ever get a definitive diagnosis at this point.    Backstory: growth Delays, GI issues and a few other symptoms as a baby/young toddler. Did not have blood work done but went straight to biopsy which was negative. Always still had suspicions that gluten bothered her.    Started developing more symptoms around 3, by 3.5 they were pretty bad and her dr recommend eliminating gluten. (Blood in stool, rashes, low grade fever, joint pain, stomach pain and bloating, behavior issues) Everything cleared up quickly! Yay. Still had occasional gluten because I was under the impression it was "just an intolerance" and her symptoms kept up/got worse with each exposure. (Developed vomitting as most recent symptom) So I wanted to know if it was celiac. Can't do blood or biopsy since she's been mostly off gluten for months by this time.  I really was hoping to have a concrete answer and diagnosis, So we did genetic testing recently. It came back positive for half of DQ2 (beta subunit). Her dr isn't giving her official diagnosis but says "she is at a fairly low risk" but with her symptoms doesn't that mean she has developed it??!   Either way he says to keep her off gluten but I don't understand why he won't diagnose? Right now I am just telling people (besides family) that she has it because it's too hard to explain it all but do you think an actual diagnosis would be beneficial in any way? Should I push the issue with her dr? 
    • Awaiting Biopsy Results
      Thanks for the advice and encouragement, Gemini. I appreciate having additional insight into my situation. Celiac being the cause of my health issues makes more and more sense the more I learn about it, and eliminating gluten sounds more and more like the right choice for me.
    • Did Jennifer Esposito Leave Town Amid $43 Million Gluten-Free Bakery Lawsuit?
      The topic of this forum is "Celiac Disease - Publications & Publicity," so certainly it fits in here, and in fact, this topic is designed specifically to handle any media coverage that relates to celiac disease and/or the gluten-free diet.
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