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
Thanks for your reply. Sorry it has taken me so long to get back to you. My internet has been off and on for about a month and a half. AT&T has been having problems with it. Thanks for reminding me about lotions. I totally forgot to check that. Thank goodness it has gone away. My forearms now have scarring on it that looks like I've had a bad burn that has healed.
Thanks for your reply. I didn't get it tested because we don't have insurance anymore. With all of my daughters health problems they raised it twice in one year and we couldn't afford it anymore. The itching isn't as bad as it was, but the bumps are still there. We are double checking everything we eat now and we are making sure we are gluten free. I don't want her to get as sick as she was last year. She missed her junior year of high school and was on the homebound program. She also doesn't want the rash to come back like it was in March. It lasted 2 months.
I posted this under someone else's topic in another catergory so I thought I would repost it here.
I am dealing with a crazy rash on my arms. Mine are tiny red raised bumps that are forming a huge raised patch on both of my forearms and are now extending up past my elbows. They are extremely itchy. I don't have blisters that I can see, but when I scratch them I can feel a watery liquid. Even though it has raised bumps my skin feels slick like everything is burned together. I have had them since last Wednesday and no medicine is working on it. I suspected my daughter as having celiac and she was diagnosed with DH in May. I went gluten free with her to make it easier on her. We both ended up getting glutened last week. She has a few bumps, I have a ton. Any idea what this could be. Thanks, Claudia
I too am dealing with a crazy rash on my arms. Mine are tiny red raised bumps that are forming a huge raised patch on both of my forearms and are now extending up past my elbows. They are extremely itchy. I don't have blisters that I can see, but when I scratch them I can feel a watery liquid. Even though it has raised bumps my skin feels slick like everything is burned together. I have had them since last Wednesday and no medicine is working on it. I suspected my daughter as having celiac and she was diagnosed with DH in May. I went gluten free with her to make it easier on her. We both ended up getting glutened last week. She has a few bumps, I have a ton. Any ideas what this could be. Thanks, Claudia
Hi, my daughter is also 17 and just recently diagnosed. Everything hit her about a year ago this month and it took them a while to figure it out. One of her main symptoms was the vomitting due to the casein in dairy products. Everytime she ate or drank dairy products she would throw up not from the wheat. When I suspected her to have celiac I took her off gluten and she was still vomitting. Then I read on this site to eliminate dairy and when we did no more vomitting. I hope you figure it out. In the meantime you might want to eliminate dairy and see what happens.
Hi, We tried a pharmacy in Canada and after waiting for the medicine for 4 months and 5 emails asking why we haven't received it they sent us an email in April saying they were closing their doors because it was too hard to get the medicines into the U.S. According to the doctor he can no longer prescribe it anyway. Thanks anyway, I appreciate your comment. We will just take it one day at a time for now. He thinks the Celiac is what caused her acid reflux and the gastroparesis and that it may resolve since she is gluten and casein free. I hope he is right.
Hi, my daughter is 17 and has celiac, DH, casein intolerance, and gastroparesis. Her celiac test was negative after a two month gluten-free diet. In January the doctor told her to start eating bread products again and she started breaking out in a rash on her hips. He said he thought it was a vitamin def. rash and to give her a multi. He also told us about the gastroparesis at this time based on her results from the stomach emptying scan. Her stomach only empties at 16%. Her doctor has her on domperidone, but he told us today that he got a letter stating that doctors in Oklahoma are no longer allowed to prescribe it or they will lose their license. I don't know what we will do then. She went from 138 to 113 (lowest point in Feb.) before the medicine. She missed her whole Jr. year of high school last year (homebound program). The rash spread to her bottom in March so I took her back off gluten and within a week and a 1/2 it was gone. She still has purple looking scars all over her bottom but she is glad that it doesn't itch anymore. She is so much better now. I hope she stays that way so she can finish high school. The doctor looked at it today and said it definately looked like the celiac rash now and to keep her gluten free. She has gained up to 134 in a 2 month period (18 llbs since her visit in March). He said the dopmeridone won't be available after a month or so. When it runs out the compounding pharmacies won't be able to compound it anymore. I could not find any information to corraberate what he told us, so I hope he is wrong. The pharmacy said that they haven't received any letter tellling them not to make it so they will make it for her until her prescription runs out or they get told not to do it any more. I looked on the OK State Board for Pharmacies and couldn't find any info on this. Has anyone else heard about this?
My daughter has these same bumps on her hands and they also popped open. At the time she also had cold sores on her lips and canker sores in her mouth. I thought hers was the herpes simplex virus which can also spread to your hands. I'm not sure now after seeing your pictures. Did they check for the herpes simplex virus. She is not officially diagnosed as celiac, but is definately casein intolerant and has gastroparesis. Her celiac blood test was negative, but she had been gluten free for 3 months when it was taken. We haven't seen the doctor since her sores broke out. She had a doctors appt. on the 24th. She still has the bumps on her hands but not on her lip or in her lip. She has had the bumps on her hand for about 3 weeks.
We did tell her doctor about her being gluten free and he still wanted to do the blood test. We also told him that she was feeling somewhat better eating gluten free and he said to continue it, but also keep her off dairy since she is lactose intolerant since this all started. She is not on the new medication yet, we have to order it from Canada. All of her other medications she has been on we found out they had lactose in them and she discontinued them. Right now she is on Protonix for acid reflux, but he is putting her on Domperidone. He said that her lactose intolerance can also cause all of her symptoms. We first noticed things happening to her this past summer. It started with her getting sick on ice cream. Then when she started getting sicker in Aug. The doctors were giving her different medications for GERD. None of the medications were working. She just seemed to get sicker. One of my day care parents mentioned celicac and told me to look it up. She has so many symptoms that I decided to take her off of it. When I mentioned it to her old gastro doctor he told me she couldn't have celiac because she hadn't lost a lot of weight. But when I took her off gluten in Oct. her weight stabilized at a 10 lb. weight loss and her vomiting wasn't nearly as bad. It comes and goes. I had read about gastroparesis on here and it fit her to a tee. When I took her to the new doctor he too suspected it and read it on her records from the previous doctor. He couldn't believe the other doctor hadn't done anything about it or hadn't checked her for celiac. He said she has all the symptoms, she should be tested. So that's where we are right now. Gastroparesis was positive. Still no word on the celiac panel. But with her gluten free it won't be positive unless she is still getting glutened somehow. Thanks for your help. I am so glad I found this forum. It has helped us so much to get so much help from all of you.
Thanks to all who have replied. She does have severe nausea and occasional vomiting. The vomiting was much worse before she went gluten free. I'm hoping its not permanent. The doctor told us she would have ups and downs with it. Is there a specific diet for it? Her doctor hasn't told us too much about it. I've read some online about it. She has another appt. on Jan. 14th. He said we would talk more about it then. Her old gastro doctor suspected it but never told us he did. I found out about it when we got her records from him for the new doctor. I still think she has celiac or at the very least gluten intolerance. She has missed a lot of school this year. They have her on home bound right now. I hope the new medicine will help her. It's just so weird how all of this just came out of the blue. She was always a hyperactive (ADHD) child and then suddenly she is so sick and always tired. I'm really worried because she is always sick. I hope this new doctor helps her.
She had a test at the hospital where she had to eat something and then they took exrays every 15 minutes to see how her stomach was emptying. He said that it wasn't emptying like it should. Thanks for the information though.
My daughter was diagnosed with gastroparesis. We are still waiting on the celiac panel to come back. I don't think it will be positive because she has been gluten free since Oct. What can you tell me about gastroparesis. They want us to put her on some medication that you can only get from Canada since Reglan makes her sick.
He did say that she probably has esophagitis based on the endoscopy the other doctor did. He is going by all of her records from the other doctors that she has seen. We just went in to get a second opinion on the GERD and IBS. He said he might do another endo after these other tests, but we are going to wait until the results come back to procede further. He is the 1st doctor to take what we say seriously. Her regular doctor was stumped and requested the second opinon because he felt the first gastro doctor was missing something.
I also told my daughter not to be surprised if the test comes back negative. We still believe she has celiac with or without a positive on the test. She will continue a gluten free diet regardless. She is feeling a lot better on it. Now if I could just get her to leave cheese alone, she would probably get better faster. But he also told her that, so hopefully she will listen now.
Update: The new gastro doctor ordered a blood test for celiac even though she has been gluten free since Oct. He also suspects gastroparesis and she is going for a test tomorrow to see if she has that. We should get the celiac panel back in 3-4 days he said. I asked if this test would show celiac even though she is gluten free and he said yes. We shall see. He also said she is definately lactose intolerant and she is to quit eating or drinking any dairy products. I am so glad we found him . He is very caring and listened to everything we said. He is the one that brought celiac up. He said he can't believe no one has tested her for it .