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
So we put him gluten free after the negative bloods, we didn't want to push for a biopsy unless we had a bit more evidence. Belly pains stopped 100% . He has just gone back on gluten for a challenge and yep, belly pains are back with foul stools. I rang the coeliac society, and they said the new test they are working on that would only require 3 days of eating gluten could be 5 years away or more. I don't know if I can watch him in pain for 6 months (until he can get he biopsies done.)
You're story sounds like mine, expect my mother took me to specialist for years and they all thought she was "over involved". But yeah, symptoms as a child, always feeling ill, always vomiting, chronic nose bleeds, ulcers etc. I was only after she as diagnosed at 65 that we started looking at me. Hindsight is amazing isn't it?
I've since found out that the stomach acid not being able to swallow thing is due to Eosiniphilic Esophagitis. They are co-morbid conditions, and there are a few people on this forum who also have both.
I'm not sure why, but red wine seems to be very bad for me. I can't work out why, I am fine with whites, champagne, cider, other spirits. But for some reason, if I have a couple of glasses of red I will puke all night long. I don't think it is gluten related, but I'd love to know why it happens!
Yes, I started getting episodes of small bowel intussusception (which is a life threatening emergency) the last time I had it was after going gluten free for 6 weeks and then going out to dinner with friends to a Vietnamese and deciding I didn't want to be "one of those people", so I shared the same food as everyone else, and within 45 minutes I was projectile vomiting was in agonising pain and was rushed to hospital with intussusception again. I have never eaten gluten again (4 years) and never had intussusception since that night.
I know this is an old topic, but i have both EoE and Celiac as well. No food allergies at all though, my specialists (who are doing clinical trials with EoE) also say they see a lot of people that don't have allergies, but that it may also be caused by intolerances.The weird thing is one of my main triggers for EoE is gluten/wheat.
My 3.5 year old complains of stomach aches multiple times a day every day and it has been going on for months, he has had a negative coeliac panel, but is positive DQ2.
Just wondering if anyone else's child has had just stomach ache and they turned out to be celiac? I have celiac, as does my mother, suspected in my (deceased - Bowel cancer at 45) grandfather and another one of my child is going for his second biopsy in a couple of weeks after the first one came back "borderline" at 18 months old.
Our GP doesn't seem particularly concerned even with our family history.
I am trying to get into a GI asap for testing of my little boy, who has had issues for years and years. He had a biopsy when he was 18 months which was borderline and not enough for a diagnosis because he had projectile vomitting, bad poos an severe reflux his whole life. Fast forward to now and he has been having chronic belly pains for the last 6 months. bad poos (his whole life) and low iron (his whole life). Belly pains are getting in the way of every day life and have been so severe I have taken him to ER over it He had coeliac bloods done a few months ago and they came back negative. Mine are also always negative, and I am coeliac so I don't trust them anyway.
I took him off gluten last week and an instant improvement.
I gave him gluten twice in the last week - once ended up bad belly pains and vomiting the other time ended up lying and writhing in pain for 7 hours with a "sore belly".
I spoke to the coeliac society today - they told me to get him tested again - it is an 8-10 week wait just to see the paed GIs at the hospital.
How did you get through your child being so sick and in pain for that long? Can I give him anything to make him feel better?
I hate this - I hate having to watch him get ill for so long. I'm not sure if I can do it to be honest.
Thansk for your responses, and thanks nvsmom for the info on the marsh scores. Well, I think we are on the right track, the kids have only been gluten free for a week, went to a cafe today and we let DS have a burger, didn't even think about gluten to be honest. I forgot all about it. Within an hour he was white as a sheet and complaining of belly pains which led to vomiting.
It makes me so annoyed that they basically want your child to be eating gluten for months on a challenge, getting sick all the time to have a biopsy that may not come back positive anyway when it is clearly gluten. He gets sick from gluten and has done his whole life and no one will call it because his biopsy was marsh 2 and not marsh 3 gah!
He is one of the best GIs in the country, so I am reluctant to leave him. But they redid his bloods recently before he was gluten free and they showed up negative again. Which really, my bloods have always shown up negative and I am deffo coeliac - so I don't really trust the bloods anyway.
What does Marsh 2 changes mean in terms of coeliac? Can it mean other things too is that why they can't diagnose unless it is 3 or 4?
I need to pick the brains of the people on here who know heaps about coeliac.
A bit of background information, I am coelaic and also have EOE, my mother is Coeliac and my grandfather developed bowel cancer in his 40s after a lifetime of sick bellies.
Two of my sons have been seeing a GI for almost their entire lives, one had a scope at 18 months and came back with Marsh 2 changes, Gastritis and ulcers in his esophagus - he had severe reflux and was in lots of pain for about two years of his life. At times lactose intolerant but other times not.
His stools have always been vile.
Anyway fast forward to now, he is almost 5 and started complaining of belly pains all the time, one time so bad he couldn't stand up and was screaming and I ended up taking him to ER. Every day, multiple times a day.
I started a gluten free trial with him (remember - we've been through multitudes of blood tests and an an Endo and still no diag). So far no belly pains and his stools have improved.
So my question to you guys is this? Continue with the gluten free diet - or try and seek a proper diagnosis even though we've had no luck for 5 years?