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
Well, FWIW, DH never had any positive blood tests and he saw several docs, 4 or 5.
He has had a positive fecal TTG from Enterolab - please note that this test is not formally validated. Here's a link to info on fecal TTG from celiac.com:
He did have an endoscopy and that day the doc said this is celiac, but the biopsy results were negative. He got a set of color images from the procedure so he could see what the doc was talking about. The doc supported the idea of a gluten free diet despite the biopsy results. The photos were a big part of what convinced him to change his diet.
Here are some sample pics: http://www.gastrolab.net/ksgceli1.htm
No positive tests, no formal diagnosis, but he's in great health on a strict gluten and casein free diet.
DH (celiac and casein free) is up for a job opportunity.
So far, the application has been handled online and there have been emails and phone calls with the recruiter.
If that goes well, he gets an invite to a week long "orientation." Job offers are handed out (or not) on day 5.
They put you up at a company owned hotel and breakfast and lunch are catered.
I know he can handle feeding himself. There are fridges, a microwave in a communal kitchen area, a grill and he will have transportation. He's great with a camp stove and can be as paranoid/careful as required in this communal area.
At what point does he mention celiac, if at all? It IS on his application by way of a required medical checkup.
There was a research review put together before the US gluten free standards were set. Basically, the standard was set at 20ppm because the "vast majority" of celiacs could tolerate exposure at that level.
I think this link will take you to the PDF entitled Health Hazard Assessment for Gluten Exposure
in Individuals with Celiac Disease:
Determination of Tolerable Daily Intake Levels
and Levels of Concern for Gluten
(US FDA May, 2011)
A very detailed look at the issues.
An opinion piece with links to the research. This is actually a pretty good place to start, I think; but the 1st paper has an interesting discussion of slow, long term reactions, that may pertinent.
Good luck sorting things out for your daughter.
Boar's Head is very committed to gluten-free/CF but I am not sure about certification. I do know that now all salamis, etc are casein free; they sometimes have milk products on the outside (I am thinking of artisanal charcuterie products.)
My spouse does well with Boar's Head and Salumi. He is gluten and casein free.
He handled those sorts of products (aged, fermented meats) even better after he recognized and addressed a histamine intolerance. Alison Vickery's website was helpful.
Apparently the DAO enzyme is produced on the tips of the villi.Celiac and other inflammatory conditions can cause you to be low in DOA.
Alcohol also causes the DAO to work less efficiently. (I don't understand why this is.) So red wine, aged cheese (sheep milk cheese for him) and aged meats were an issue for awhile. Now, he adds anti-histaminic elements to meals, or uses a Histame (a DAO supplement - be careful, not all are gluten free) or takes niacin and vitamin C if he overdoes it on histamine foods.
I am not saying that trace gluten isn't a problem; I am saying that a histamine intolerance may be aggravating a trace gluten issue. It took a long time, but he can now distinguish his histamine reactions from a gluten reaction.
Good luck sorting this out. In general, most people with histamine intolerance feel better if they take an antihistamine. Vitamin C or Zyrtec. That may be a way to approach ruling this out for you. The Vickery website is definitely worth a look.
My spouse has done well on Paleo starting around 2009. He's added back more foods, such as legumes, rice and potatoes, as "resistant starches" and he's also added back sheep yogurt this past year. He's been experimenting with various fermented foods (the yogurt, kraut juice, lacto-fermented pickles, etc) and probiotics too in this past year.
In the past 2 years, he had a problem that and we finally sorted it out as histamine intolerance. We had to tweak our version of the Paleo diet to decrease the histamine a bit and also added specific anti-histaminic herbs and spices (mint, ginger) and that plus the probiotics seems to be helping. Smoked meats, aged sausages (salami) in small portions only!
Because of the colon pain - if you're interested in the probiotics and the fibers that "feed your friends," the Cooling Inflammation and Animal Pharm blogs are worth a look. For Paleo, Marks Daily Apple is a good place to start, but there are a ton of blogs and cookbooks out there.
I've been perfectly happy eating paleo with him and can easily feed guests or my entire family that way. Everyone likes it. I don't do a lot of "paleo" treats with almond flour, etc. I'm just not much of a baker. Baked apples though - yum!
I hope these are promising lines of inquiry for you and that you are able to get some traction with the problem soon. These diet changes are a lot of work and you want the effort to pay off! Keep us posted!