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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Without Many Digestvie Issues?
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mom2allison    0

Just left the doctors. Got her blood redrawn and picked up the results that had come in so far.

 

 

 

IGA: 148 mg/dL

Transglutaminase IgA: 5 units.

TSH: 2.309 uIU/mL

Free T4: 1.4 ng/dL

 

So, looks like those are all within normal range, which is good. But now to see if we can find the missing piece to the puzzle. Thanks for all the feedback while we waited for the results.

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mommy2krj    10

Hello! Welcome to the boards. I'm not so great at reading the results so I'll let some of the resident "pros" do that. :)

 

My 6 year old was just diagnosed in July of last year. He had a stomach ache every single day for 6+ months. I put the plus in there because I know we brushed it off as a child trying to get out of doing things for a while before I really realized that it was every day. Some days it was just a passing "my stomach hurts" closer to the diagnosis he was dropping to his knees in tears.

He also complained of joint pain. Which was chalked up to "growing pains" as well. Ah hindsight.

It took 6 months of convincing the doctors that he wasn't depressed, anxious or scared to be starting school. Not my youngest child...oh no. This kid is my social butterfly! If they had said that about either of my older two kids I would have been inclined to agree with them, both of them were terribly shy and terrified to start school. Little guy on the other hand....he practically skipped through the doors on the first day. :) Needless to say there were some battles and some serious WTF moments with the doctors.

Now....here we are 6 months later. Gluten free. Struggling at times because it isn't easy. BUT....he's grown! My little peanut has grown several inches and he put on 4lbs in less than a month! He rarely complains of a stomach ache and hasn't complained about joint pain in quite a while.

Good luck to you and your daughter. I know the road is long and it's terrible to see our children struggle and be in pain....I hope you get some answers soon.

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Kjblock    0

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~

My mom was diagnosed in 2007 or 2008 and she has never had digestive problems--her main troubles were joint pain, osteoporosis, and anemia (both of which didn't really respond to treatment until she went gluten-free). I was diagnosed in December and have had frequent tendonitis, like both elbows at once, in my feet, etc.  Not sure if they are related but inflammation certainly could be.  The other thing I wanted to mention is something called Legg Calve Perthes disease.  I don't know that it's likely, but my son had it as a younger child, and with you mentioning knee, hip and abdominal pain, I'd feel remiss if I didn't mention it.  This is a condition where for some unknown reason, blood supply to the hip gets cut off, the head of the femur dies, disintegrates, and then grows back.  His main complaint was knee pain and we did have one urgent care visit with severe abdominal pain too.  Both the knee and abdomen were referred pain from the hip problem.   I would suggest just asking about it (any good pediatrician should be familiar with the disease)--it is quite obvious on xray depending on the stage (the bone should look like the ice cream on an ice cream cone, and at various points it will look flattened or even be missing altogether).  If you are able to self-refer to a specialist, you could also take her to a pediatric orthopedist to get this checked out.  It's not a common disease, but something that may be worth considering.  I've heard it said that any child with knee pain should be checked for Perthes.  Good luck!

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mom2allison    0

Kjblock - I had never heard of Perthes. Upon reading it, it sounds like it could be a problem.  But the thing I can't tell is if the pain usually progress to be worse as time goes on, or if it could be intermittent. Also, the only other reason I might not thing it would be that would be that her knee pain is in her left knee, and abdominal pain on the right side.  Though more and more lately the knee is the biggest pain for her, not the abdominal pain, especially after therapy.  Those days she is in pain just walking around the house.  I called today to get her back into her orthopedic doctor, but he can see her for another 11 days.  I may make an appointment with her regular doctor and ask for the orders for pelvic x-rays, just to rule it out. Even if it isn't Perthes she still needs to see the orthopedic doctor since her pain is still so bad even after 5 weeks of therapy.

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