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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thank you all so much for your comments. I will talk more with her if I can get her to talk. It must be exhausting to put on an act of happiness when you feel so bad. I know when I was in high school that is how I felt. She has allergy tests coming up on Friday and hopefully there will be an answer there.... I think there is alot more than gluten bothering her. She tries very hard to avoid gluten when she in home on weekends...and her friends mom buys her gluten free pretzels, pizza, etc when she stays at their house. But again...her friend came over for the weekend and they "hung out" but today she is exhausted, her asthma and rash are worse. It was good to hear her laughing with her friend yesterday....but today she just can't get out of bed. I will keep you all posted on how she is doing....and beaglemania...I will give her your invite to chat....maybe I can get her to sign up on this site to go into the teen section.
We have to go to the San Luis Valley on July 20th to pick up my other daughter (10years) from my mom's house. But Allie won't be going with us...she is going to a concert with ther friend. Shoot me an email firstname.lastname@example.org....
I have been gluten-free for 4years, she has been gluten-free for almost 2years. She did see the improvement, but once again this summer has been filled will illness. Of course it's not like the school year is any better. She has times when she gets a virus and then another one and then another one.....her lymph glands swell to the size of a garbanzo bean on her neck behind her ears. In January she ended up in The Children's Hospital in Denver with asthma problems. She stayed for 3 days.
The sores she gets look just like the sores I get after a gluten accident. They itch then open and look like she has chicken pox...which for a teenager is very embarrassing...Am I totally sure they are DH...no, the skin scrap came back inconclusive as did her blood tests....I have her scheduled at TCH for allergy testing with the pulmonary doctors there for July 13th...which means after today...she can't take her antihistamine until after the testing.
As far as other issues...she has them that is for sure. She was in residental treatment for 6 weeks when she was 12 for cutting, depression, suicidal thoughts (after she was sexually assaulted by her step grandfather).
She gets better then gets worse....I can't say she isn't sneaking gluten that is always a possibility. I just wish I could fix it for her...although I know I can't. I just thougth if she knew other teenagers who have intolerance then she wouldn't feel so alone.
We live in Arvada Colorado...my daughter 15yrs is having really bad problems with DH, and allergies. She had been tested (blood & skin). Both came back negative and inconclusive. She has other allergies anyway and asthma. She is having physical and emotional problems because of this...her friends don't understand why she is always sick, why she can't just go out with them. She says she feels embarassed by not being able to eat like other kids. She gets very angry, and takes it out on those of us closest to her...She has been sick with swollen lymph glands off and on for over a year......Is there anyone out there who knows where I can get her help? She is already in counseling, but the physical feeling is bad right now. I would appreciate any feed back you can give.....
Thank you so much for responding. Both my children have been tested (blood for both and endoscopy on my youngest) and they all came back inconclusive...so she may not have Celiacs, but could have DH anyway. I am so proud of the fact that both my children have been gluten free for 2 1/2 weeks now....so I will find that dermatologist and MAKE them do what needs to be done to help her.....Thank you again!
I am so worried about my 13 year old....she has had "eczema" since she was born, and treatment helped before the whole steroid thing, but now it is worse. I looked on the internet because I have Celiac Disease and my sister informed me it is possible to have just the DH and no GI stuff....well the photos on one website looks just like my daughter....she has it everywhere (buttocks, legs, chest, stomach, neck, arms. She says she feels as though she baked in the sun and then someone put her in a bee hive and the are all stinging her. I don't know what to do to help....I would take her back to the dermatologist, but when I told her I thought it was DH she turned to my daughter and said...."do you have GI symptoms too....?" So I thought you had to have both symptoms....now I find you don't. Please help...I've heard of the medication cal Dapsone, but can she take this? I live in the Denver Colorado area if anyone knows of a dermatologist who will listen when I say she had DH.....Thanks for you time and any advice is appreciated!
Hey there, I'm a new old member. I have been gluten-free for 1 1/2 years and still have some problems...one of them is absorbtion. I have a very difficult time digesting anything much less vitamins. I can't eat many vegies because I get sick. So the vitamins pills are out. I tried to do the liquid vitamins, but those make me feel sick too. GI doc said my endoscopy was horrible to begin with, so he wasn't surprised....I guess. I drink alot of carnation instant breakfast until the lactose intolerance started, now I drink propel water. Next step is to start B12 injections if this doesn't help my energy level.....I guess we will see. Any other suggestions?
Hello there...I haven't posted in awhile....but I visit to read on how everyone is. My name is Kelly, I live in Arvada Colorado, I'm 35 years old, married for 14 years, and have 2 beautiful daughters 12years and 7years. Also the proud owner of 2 mini schnauzers 6yrs and 1yr which I adopted from the pound.
I was diagnosed on April 26, 2004. I started on my diagnosis rollercoaster because my younger sister had DH and was diagnosed via skin biopsy. My mother then had her blood tested after learning it can be genetic, and alot of my sister's symptoms were similar to my grandmothers (mom's mom). Her TTIGA was 181 on a low carb diet (diabetes). My sister and mother bugged and harrassed me to have my blood tested....So I finally I went and had my blood tested....and surprise I had a count greater than 200 (apparently it was off the charts)...anyway I went through the endoscopy and my GI doc was shocked at the damage, and concluded I Celiacs. My girls have both been tested (oldest by blood-negative, youngest by endoscopy-inconslusive & blood-negative). My youngest has been diagnosed with ADD and Bipolar Disorder for over a year now and takes 2 different meds for it. I still think it's Celiacs, but the peds GI doc says no...so I am going to take her to another doctor now in August.
I am doing okay gluten-free. My kids and husband still eat gluten and that makes it hard, but I try to stay away from gluten. I have had a few accidents, and I know when I have had them.....but I have to admit now I finally after being gluten-free I know what it is like to feel "GOOD"....so when the accidents happen I am miserable....but I know the "GOOD" day will be back soon, and then I just start over from the basics and move on. I would rather have a handful of "GOOD" days than a lifetime of bad. I work for pediatricians, and one asked, "Are you glad you know?" I can't imagine not knowing....I have lost 18 pounds and 2 sizes.....I have energy to do things, and my mental clarity is awesome! So I simply told her, "I would rather not have this, but I needed to know why I had been so sick for years..."
So now that I have ranted my whole life story....I think this site is great too....
Hello out there...just thought I would let you know....I went to Red Robin in Arvada, CO and they were very accomidating. The manager brought out food labels and after a couple of questionable ingredients she offered chicken breast, plain rice and steamed vegies...the plate she brought me was huge and tasted great. Apparently one of their own employees has Celiacs and they are very understanding about helping out....It was great and made me feel very welcome there....
Hey there...just thought I would let you in on what we have found in our family. My mother, sister, as well as previous family members on my mom's side and myself all have Hashimoto's. My oldest daughter also has Thyroid fluctuation which the doctors believe to be the beginning of Hashimoto's...although I intend on stopping that before it gets to the medication level. My mother is on Levoxyl and has recently had her blood drawn for the TSH and she had to lower her Levoxyl by a quarter it was before. She has been gluten-free since January and she is doing well. I haven't had to lower my dose of Levoxyl yet, but I have had to lower my Zoloft. I don't know if this helps, but I am hopeful as well to someday get off all my pills (Levoxyl - Hashimoto, Amatriptaline - Migraines, Zoloft - Depression). Someday I may be pill free and that would be fine with me.
My 7 1/2 year old has had a rollercoaster ride since she was 2years old. She was a difficult infant and toddler...always very weepy especially when it came to feedings. As far as behavior now...she has been diagnosed with ADHD and Bipolar Disorder. BP does run on her father's side, but I always thought her behavior always rotated around food and when and what she ate. Her pediatrician (1st one) pretty much told me I was wrong that wasn't possible. I have been around diabetics and hypoglycemics most of my life...and my youngest is awful if you don't give her something every 2-3 hours. She is currently on Trileptal 150mg and Strattera 18mg twice daily(because Concerta, Addreall etc made her worse hyper wise and anger wise). Her new pediatrician listens when I tell her that food triggers either the hyper or anger in her. Right now the Trileptal helps with the rages she has and the Strattera helps with the hyperactivity. She is under a psychiatrist care, but that psychiatrist is moving and I am left to find another one. This will be her 3rd psychiatrist and a year worth of meds. I do see the difference when she is on them, and right now she isn't gluten-free yet because the blood tests for her IGA TTG were somehow cancelled and we had to redraw yesterday. She has always had reflux and chronic diarrhea as well as being very small (finally weighs 50lbs at 7 1/2 years -- a very difficult feat to obtain). But back to behavior....my oldest 12yrs old has been diagnosed as ODD (Oppositional Defiant Disorder) since she was 7years old, and now at 12 she is on 200mg Zoloft a day for depression and suicidal thoughts...her blood test came back negative and no biopsy was done. I still think there is gluten sensitivity if not intolerance, but again I am being told it isn't food that makes her act out. I have found a few articles on ADHD and Bipolar and Depression and some say food is the cause.....I haven't tried taking anyone off meds yet...I myself am on Zoloft for depression....I was taking 75mg per day and now after 2 weeks of being gluten-free I had to lower my dosage to 50mg per day....My mother who will have my kids for the summer is gluten-free too and she will observe the changes in behavior....
I have rambled on and I'm don't know if this helps...but that is my household at this time.....a pretty crazy place to be. I hope your child can come off the meds. Keep me posted on how things go...
I am so glad I came across your recent update. I know that I will be requesting a second opinion as well tomorrow and maybe there will be answers. I cut the GI doc I had seen out of the picture today. I had my daughters blood test drawn at the pediatric office I work at and the results will come to her PCP. So I will request a second opinion on the biopsy tomorrow.....I am glad things are getting better for you...and thank you for giving me the information to check further into the HLA and second opinion. My mother,sister,2aunts and myself are all positive and I find it hard to believe my kids are negative with all their symptoms....
I read your post and it really touched me. I am sorry things aren't going that great for you. I do have a similar situation with my daughter and I am alittle upset about it. My daughter had her biopsy and the GI doc said it was inconclusive, there were patchy spots... The GI doc said this just means there may not be damage to the entire intestine yet. So I was waiting for the blood test results that had been drawn while my little one was out for the biopsy, but I found out today though that this same GI doc didn't request the TTG IGA test...only a CBC from which he said she has anemia, which I already knew. So now I have to have her go through another blood draw for the TTG IGA...but can anyone tell me what an HLA is? Should I request that be ordered too?
I don't know if I am much help to you, but I hope everything gets better soon, you and your family are in my thoughts and prayers......
Thank you for your response. I think my intestines feel bad because they are a mess. The GI doc said he hadn't seen blood test results as high as mine, and the small bowel matched it. I talked to his office today and I am going to be sick for awhile because he irritated an already irritated part of my GI tract. I also am sicking with clear liquids, rice and potatoes I was able to get mashed potatoes to stay down at lunch. I am feeling very frustrated and overwhelmed too I think. I have known now for over a month that I would have to become gluten-free eventually but I guess I wanted a miracle and the GI doc to say...oh no it isn't celiac disease so I wouldn't have to change my entire life and eating habbits. But I guess I need to start looking at what I can eat instead of being upset at what I can't eat. Thanks again for your reply. I will try work tomorrow and see what happens.
I am just wondering if anyone else has had this experience after their endoscopy. I had mine done on Monday afternoon...and I haven't been able to eat anything, just keep drinking Gatorade. My abdomen feels like it was pulled out and I have a fever. I called my GI doc and he thinks it may be the flu...I have felt like I had the flu off and on forever so I can't say what it is. I am sooooo tired and unable to consentrate. My GI doc said my small intestine looks pretty bad and he has no doubt it is celiac disease...however he took 3-4 biopsies of different areas and tested me for a bacteria in the stomach that can cause ulcers....that test was negative. I just feel awful and I missed work today and will have to go in on Saturday to catch up on my work....what a mess!