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
I've already been to one GI doc and that was a flipping mess and I do not have a lot of time and I have even less money to mess around so getting it right the first time is imperative! I have every classic symptom of Celiacs disease with a few others on top of that and I do NOT want to be diagnosed with IBS again. I need the right diagnosis the first time and I need a doctor that will treat me as a partner in my health and not act like he is a god. I know a good bit about my own heath and I don't need one to waste my time and precious money.
So, with all of that said, who can you recommend to me? I'm very tired of being sick and will not be quiting gluten until proper testing has been done but I am tired of spending time on the toilet and sleeping so much.
I think it was the upper intestines. She said it wasn't Celiac's or Crohn's, not parasites either. She told me that it was damage done from food allergies. My confusion comes from going back to the allergist to find that he's outgrown his food allergies so how can the damage come from them?
I've done the food journal and that is how I figured he was allergic to dairy and wheat (at first) and now I know it's gluten. I went to the allergist to confirm what I found out. I am going through the food journal and poop-check each day with him still and now I am also doing it again with our newest addition because she also displays symptoms of food allergies. Yippy-skippy
We homeschool our children and for a variety of reasons, one being we have several food allergies with our children. It's rather easy, enjoyable and MANY, MANY, MANY homeschooling groups out there! OH my gosh, I wish people would STOP saying that we are not socialized! (gaaaaaaaaaaaaaaaah!) I have found that my kids have MORE social opportunities at home than in public school and MORE opportunities to grow up and be a kid and not a machine! (no child left behind comes to mind here) Food allergies (we also have one that is either celiac or simply gluten sensitive) definitely are MUCH easier to manage when your child is under your care so there are no worries here from that. I don't think I will ever allow my children back in public schools simply because of food issues. One year our peanut allergic child was given a PB & J for lunch and she was new to the diagnosis so didn't think about it and ate it, nothing happened THANK GOODNESS but still the issue remained that nobody was paying attention!!!
WWW.HSLDA.ORG has LOTS of information to get you started on your path to schooling your children. They will have information on the laws in your state, they can give you sample letters you can use to send to school board members for various reasons, they give you advice, support and you can search for groups in your area.
Ok, I have NO clue where to go with this and there isn't a Doctor out there that can figure this out for my little guy. Please help out a frustrated and worried mommy! I know I am not a member that posts a lot here so here is the short and skinny of our little guys history:
* Allergy tested at 7 months-pos. for delayed allergies to wheat and dairy, inavertently went gluten free at that point with him AND me since I was nursing, he's now 2 3/4 years old
* He was still having symptoms as if he was ingesting his food allergies, did an elimination diet and through hard work and close attention I pinpointed gluten at 2 years.
*Ped. GI doc saw him at 2, blood test was neg., stool sample was normal, blood test showed he is VERY allergic to foods, biopsy by naked eye was normal and by microscope there is inflammation and damage but was told not Celiac but to food he's allergic to. Told to go back to allergist for re-test.
* Just retested for foods by blood, scratch and patch testing and ALL are now negative. So GOOD for losing the wheat and dairy allergy but BOO for not having answers STILL!
So, why did the blood test numbers come up so high showing he's very allergic to foods with visible intestinal damage when he's not food allergic? Before his biopsy he had to eat gluten in mass quantity (NOT fun) so I thought perhaps that was the damage but now the testing says no allergies? What is causing the damage?
I'm worried because I don't know where to go from here and if he does have Celiac's disease we certainly would do things like buy a new toaster and most likely have the house go gluten free because there are 8 people living here. It's a nightmare to keep gluten contained around here with so many mouths! It would be SUPER easy to be glutened here. If he is Celiac then continual damage is happening on accident because we have been told he's fine. Is there anything else we can do? My only other thought is to go to his Ped. and ask his advice, tell him my concerns and see what he says. I also worry about school, airline food, camps, etc. Some of these things need doctors notes (special airline foods) and if we don't have the diagnosis, nobody takes us serious. I'm freaking out a bit and I apologize! I'm a mama at the end of her rope and patience and worry doesn't help.
I'm in the exact same boat as you are except this is my 2 1/2 year old son! He has the intestinal damage and inflamation and physical symptoms with nasty GI outcomes that obviously points to gluten consumption but they won't give us the diagnosis! Gaah!
She said the blood test was negative (which I expected fully), inflamation and intestinal damage but not to the villi. I was about to post another update about going for a follow-up at the allergists office to see what foods we were missing that could be causing damage and the foods he tested positive for as a baby no longer exist; he grew out of them. Yay! So leaves the question of what is causing the damage?
My little guy is almost 3 (In July) and he exhibited similar symptoms as a nursling so I went gluten-free for him. I again tried gluten in the form of barley baby cereal and got a HORRIBLE reaction from that. For him, so far he has not outgrown it if it is just a gluten sensitivity.
I just assumed she knew what she was talking about that it was not celiac since I know very little. He had a neg. blood test but I knew that was going to happen since we first purposefully introduced gluten only a few weeks prior to testing and the fact that most test neg. for it to begin with. She just said there was some damage due to food allergies. I assumed there was a difference. I just am still questioning because he wasn't on long enough to get a difinitive answer or enough damage done and he still has symptoms after exposure.
We had him off of gluten for the most part since he was 7 months old. He had a positive allergy patch test to wheat so I was keeping him wheat free and shopping for groceries, if it said gluten free I knew it was also wheat free so I just went that route but didn't focus on the gluten free part. He still was having issues now and then and it hit me that maybe it isn't the wheat but the gluten since I have issues with gluten so I tried another grain with gluten: barley. I used barley infant cereal and his first bowel movement was pitch black! He then had other movements that was marbled with blood, battleship grey to neon yellow and we've had unnatural green as well. This was all before it went back to normal. Oh and the smell! OH my gosh it was like vomit!
During the 2 month wait do the scope/biopsy he had to eat gluten and he didn't have such pronounced movements as that one but he was having other digestive symptoms, got dark circles under his eyes and my normally calm two year old (yes I said calm and two year old in the same sentence), became a two year old that most people see with "the terrible two's". Screaming, throwing himself on the floor in a fit, crying and occassionally waking at night with no explaination.
I'm wondering if the damage she was seeing was just the little bit he incured while eating gluten?
He also cannot have dairy and when I weaned him at 13 months he started drinking coconut milk and then we switched to almond milk. He is 100% dairy free to this day. One of his tests were for parasites and that came up negative. He seems to not do well with soy and I am not hip on soy anyway so it's a non-issue.
Anyway, he's dairy, gluten and banana free but he still finds gluten from his siblings now and then which causes nasty issues GI wise.
This is all true and damage is damage. I know that gluten is causing issues with him, he got into some this past week and he's had major GI issues for the past 3 days. ICK! He's gluten free MOST of the time when his siblings aren't leaving their remain around the kitchen.