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
What exactly were your slightly raised TTG levels, do you know? Did they do the EMA? You could pay for a private consultation with a gastroenterologist if you were so inclined, if you really want some answer from them that's what I would do. If they did think you needed an endoscopy then you would of course get that on the NHS.
Saw the dermatologist today, she thinks its eczema although it does look quite like DH. He has it on his inner elbows and behind knees, as well as other places but they are the worst, the DH pictures were all on the front of the knees and backs of the elbows.
And while it is itchy, it's not nearly as horrific as I've seen it described here and in other places. I also read that it's very rare in kids under 9, but I don't know how accurate that is.
I see her again in 6 weeks, if it's not responding to the eczema treatment by then she will biopsy it.
My 7yr old was diagnosed with celiac via an endoscopy and +ve bloods back in October, he has been gluten free since then and I'm fairly sure that there are no cross contamination issues for him as I had been gluten free for a year prior to diagnosis.
So a few days ago he complained of being itchy, his skin on his trunk was dry and he was scratching a lot and even woke during the night. He has always been prone to dry skin and sensitive skin but that's about it.
last night I noticed that he had a rash on his inner elbows, the backs of his knees and all over his trunk and buttocks. It is made up of pinprick sized little spots with teeny tiny scabs on some of them and others look like little blisters, they are very small.
I can't get a dermatologist appt for several weeks and I think it will be gone by then, how important is it that we get a diagnosis for this do you think? I mean, he's already gluten free so I was a bit surprised to see this appear, however it's only been 8 weeks and it's entirely possible that he has had this in the past but I just never noticed.
I know the dermatologist personally, (from church) but we are not close or anything, I would need to be convinced that it was important for him to be seen soon in order to call her at home and see if she could squeeze him in. What do you all think?
Also, how exactly is it diagnosed, can she test for it in her office or does it need to be sent so a lab?
Edit: I have a photo of his arm that shows the rash, I don't know if I can post it here, if anyone can help with that I'll gladly post it.
Sorry to hear about your doctor issues, that's very frustrating.
I am from the UK and now live in the USA, my son was recently diagnosed here with celiac and I suspect I have it too, though they messed up my testing, it's a long story. My brother is going to a 'well man' clinic in the UK this week and I have prepped him to ask for the test in addition to other bloods, we'll see if they do it or not.
I have a couple of suggestions for you,
1. See another GP, are you in a group practice? If you are you can see any GP there, try and find one you think is sympathetic. If not you can change your GP, which is a bit of a hassle, but you're getting nowhere at the moment with your current Dr.
2. Boots have an over the counter blood test called Biotech Biocard Celiac Test, which is not a replacement (I don't think) for the blood test that your GP would do, but if it gives you a positive it would help your cause in getting the Drs to take you seriously. If it's negative I would not read that as meaning you do not have celiac though.
3. This is the NICE guidlines relating to the diagnosis of Coeliac disease. http://www.nice.org.uk/nicemedia/pdf/CG86FullGuideline.pdf
Page 9 has recommendations on when to offer testing, from your post it seems to me that you have "recurrent abdominal pain, cramping or distension" It also states that doctors should "Offer serological testing for coeliac disease to children and adults with....irritable bowel syndrome"
4.Your GP is wrong to say that you would be underweight with Coeliac, and he's wrong to say that you would present with diarrhea, only 30 or 40% of adults with Coeliac present with diarrhea.
5. If you have coeliac disease you will not be eligible to get gluten free foods on prescription unless you go the route of having a blood test and endoscopy for diagnosis, I know that would be a consideration for me if I lived in the UK. Don't go gluten free until you have completed all your tests though.
If I were you right now I would contact BUPA and pay to see one of their private GP's, I think you will be taken more seriously there because you are paying for the service. I know it goes against the grain to think of paying to see a GP in the UK, but I would scrape together the cash and do it. You'll be able to see someone quickly and hopefully have them do all the tests you need, I think it would be worth every penny and money well spent.
I live in a small town and our local Walmart sadly stopped carrying Earth Balance, the only other supermarket that has is it is a small Kroger and it cost almost $5 per tub, so I won't buy it at that price.
I noticed some dairy free Bestlife sticks and spread in Walmart the last time I was in and emailed the company to see if they were also gluten free, here's their response:
"Thank you for taking the time to contact us here at the Bestlife. We always appreciate hearing from consumers who care enough to reach out to us with their comments or questions.
We are happy to report that all of our products are Gluten-Free.
Great news that it is only a few days to the endoscopy. I hope that the GI will talk to you after the scope and tell you what he thinks, if he/she does and he give you any details do let us know what he/she said. Hopefully you will have the pathology soon afterwards.
Please do let us know how your little one does on the diet!
I would echo what the other have said about checking your pantry for hidden gluten. I have gotten rid of all gluten baking stuff and bake exclusively gluten free now and everyone enjoys it. My husband (a gluten eater) is making a gluten-free pizza for us all as I type, two of us are gluten-free and two are not.
I would seriously consider doing that. Toaster and bread can leave crumbs everywhere even when you've wiped up so think about that and how you store and handle it if you are continuing to have gluten bread in the house. I stopped having gluten pasta as it sticks to everything and I can't be 100% sure it's gone, we all eat the gluten-free stuff now.
Have you replaced your sieves, cutting boards, colanders and wooden spoons?
Do you eat out or at other people's homes? I would consider stopping that for several months to see if that helps, cross contamination might be an issue even when there are gluten free menus.
You need to be 100% sure that there are no cross contamination issues so you can look at other causes. Does she still eat dairy? I might consider stopping that also if you haven't already done so.
I'd also echo the advice about getting the blood tests that have been suggested. And I think your endocrinologist is talking through a hole in their head, I think you need to rule out physical causes before you label a 9 year old as being depressed with no apparent cause.
I am about to embark on the GAPS diet, I am *hoping* it will help me as I also have ongoing GI issues/exhaustion despite being gluten and dairy free for over a year. I have no idea whether it will help your daughter (or me!) but if you run out of other ideas you could take a look at it. The book that you need it called "gut and psychology syndrome", the author is Natasha Campbell Mcbride.
Lastly, not related to any of that, but as your daughter has been biopsy diagnosed in the last year you can ask for the Care Package to be delivered to her from the University of Chicago Celiac Center. We received it last week for my son (he's 7) and he *loved* getting a surprise big box in the mail addressed to him! Here's the link: http://www.cureceliacdisease.org/living-with-celiac/care-packages
They had some helpful literature in there too.
My son (7) was diagnosed with celiac (+ve bloods and biopsy) about a month ago. prior to that his symptoms really have been mild and infrequent, occasional diarrhea every couple of months and mild abdominal pain with the same time frame. I had him tested because I suspect I have celiac and have been unwell over the last year.
So, yesterday for the first time since going gluten free he had diarrhea, he was not unwell and it was only one trip to the bathroom. This morning he told me that his tummy hurt right after he had a drink of milk.
So I'm now questioning whether he has an issue with lactose, casein or both. He has cheese, yoghurt and milk every day and this is the first time I've wondered if there was an issue with dairy.
Anyone had a similar experience? how would I know if it was lactose or casein or both? I don't want to make him sicker,but I also don't want to exclude dairy unnecessarily. Not sure what to do.
I can't see a +ve test there except the first one, and that's not indicative of celiac as far as I am aware. Your EMA and Ttg were both negative. I think your doctor has got mixed up somewhere, not a gastroenterologist I hope?
As others have said if you want a definitive diagnosis then you need to be eating gluten for 12 weeks prior to testing for your blood work and endoscopy. Even if you had +ve blood work, many doctors will not give you a diagnosis based on that alone. My son had +ve Ttg and EMA, the +ve EMA means it's pretty much 100% sure that he had it, but no one I talked to would give him a diagnosis with the blood tests alone so we has the endoscopy which did confirm it. It you want to know for sure I would seek out an experienced GI doctor to do an endoscopy, if you don't care either way then you could simply go ahead and try the diet and see if you feel better.
Were you eating gluten when you had these bloods taken?
You have hashimotos, along with your IBS issues that's a red flag for celiac, I'd get the endoscopy with or without +ve bloods.
Skylark I'm going to try and get going with it this week if I can. I made a spreadsheet over the weekend that listed all the foods allowed on the FODMAP diet, I then cross referenced it with the GAPS foods and that ruled out all grains (which I was going to stop anyway) and sugars. I have also decided to stop all the nightshades, might as well go for it!!
I researched a little and ordered some probiotics and digestive enzymes. I have Vit D3 in drops already, I hate taking pills so the less the better. I got them all on amazon.
It does sound like the antibiotics might have upset your gut
EDIT: Skylark - are you male or female? I'm female and wondered if hormones might be a factor for me, but I can't find any info that would really support that.