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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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


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About mom2allison

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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~