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
My son's story is similar in the allergy testing part... I am still trying to figure out this connection!
My 10 yo son has had a bad rash on forearms and lower legs which comes and goes, and is intensely itchy. I finally got him to an allergist, who was open to the possibility of delayed food allergies (IgG mediated, like the York testing). They couldn't do skin testing since his arms were so rashy, so all was done via work. He had no reactions on IgE allergies (not even dust!) - but several on IgG testing.
The worst were gluten, wheat, barley, malt and rye! all were over 3+ and the gluten was very high. I asked the allergist to run the celiac panel - I had never even CONSIDERED that my son might have celiac before this! The allergist didn't appear to be concerned ... My doctor (Nurse/pract) was also non-plussed - you just have to follow the diet...she would not prescribe Dapsone (too harsh for children) they said. No need to see specialists!
Well the celiac panel came back with IgG and IgA AGA (gliaden and gluten) both positive and tTg also positive == almost certainly celiac disease. We now have an appt with a GI doctor at Children's in Boston. I also sent off a sample to Enterolab for testing and gene analysis.
For us, I absolutely want to get a definitive diagnosis on this, before committing my son to a lifetime of gluten--free living... but also, if he needs accomodations sometime in the future (i.e. school's often require diagnosis to provide special services), we'll know for sure. One last consideration for my son, aside from the rash (which is probably DH, but not confirmed), he has no intestinal symptoms right now. I think he (and I) may need "proof" that this condition is causing internal damage, to get the incentive to be absolutely gluten-free.
I know this is alot of info, but my other consideration is for my family. Since my son is tested positive for celiac, we will all get tested. When looking at the family tree, there is ADHD (alot), thyroid, diabetes, lactose intolerance, digestive issues, intestinal cancer, schizophrenia - but no diagnosed celiacs. Maybe we can prevent some future problems.
I still don't know what the connection is btwn the allergy IgG gluten test and the celiac IgG AGA tests... I think they are related, but I'm not sure how.
Anyhow, the Enterolab sounds like a good choice for you at present. I certainly understand not wanting to keep your daughter on gluten when she is feeling poorly - especially if you think it is helping!
I have been wondering about this... for those of you with gluten sensitivity and celiac who have had the IgG food allergy testing -
Did your testing show any reaction or sensitivity to gluten, wheat, rye, barley or malt?
I know that celiac is NOT the same as an allergy, but both do involve the immune system.
We had our allergy testing done through the allergists office - they used Alletess Labs. I have a feeling that there is only a few labs who actually do this testing and many other local labs outsource their work to them. My test report format is the same as the test from another lab. Alletess requires that a blood sample be drawn (i.e. doctor visit). York is the only lab I know that will do the testing from a pinprick sample of blood.
As to "why push to get a confirmed diagnosis"... I am pondering that too. Should I put my son through all the testing?
A friend who has a celiac daughter, said... Yes, absolutely get a diagnosis!!!
Her reasoning is that 'down the line' there may be some situations, especially for kids, where you'd need to have a definite diagnosis. For instance, getting a 504 plan put in place in school for a celiac child - will force the school to recognize and address the health issue. Same reasoning for college accomodations.
Another situation which might require a "confirmed diagnosis" is the tax laws? Like if you wanted to deduct the cost of the special foods etc. I might be blathering here about stuff I know nothing about, but I just wanted to share those thoughts.
I called my insurance company yesterday to ask if they would cover any genetic testing for Celiac.
They will only cover it if it is ordered by the doctor. So if I do it myself - no go. This is an HMO in Massachusetts by the way. They 've been very good at covering food allergy testing, which apparently some companies won't cover.
I am confused about my son's allergy testing results - and won't meet with the allergist until next week.
We had the IgE food allergy testing done (corn +1) and no others through an allergist. BUT in the ELISA IgG panel which tested 96 foods, he has many "delayed allergies". The 6+ is the highest allergy rating on this test (Alletess Labs).
(he also had "reactions" on the test to 15 other foods, including milk, cheese, yogurt).
Has anyone had Elisa IgG food allergy testing that indicated Celiac? At very least he seems to be gluten-intolerant, according to the test. I asked the allergist's office to run the Celiac panel, but we dont' know results yet.
This 10-yr old has no history of stomach or digestive problems and was a very happy baby. No known family history of Celiac, but we are of Irish stock!
But lately, he is irritable and has mood swings (tantrums or very high highs). His other main problem is a bad rash on forearms and lower legs, which has come and gone over the last few years. The rash is especially bad now - insanely itchy and he can't help but scratch it. We are trying a strong cortisone cream since the family dr. didn't want to prescribe dapsone to a child.
It is SO hard not to dive into the gluten-free diet NOW, since I can see that it is hurting him!!! But I know we need to wait until getting further testing confirmation.
Oh, by the way... we saw the primary care with the allergy results... she said, looks like he needs to go gluten-free. I asked if I needed to see gastroenterologist or dermatologist...she said no !!! She said that Endoscopy was not required for diagnosis and why put him through that if you already know...
I am a bit confused, but reading on this board has helped so much! Thanks for any thoughts you might have on our situation.
I'm in a similar boat with you. My 10 yr. old son has not been diagnosed yet, but I think he is at least gluten-intolerant. He also has a VERY bad rashes on arms and legs (which is what started us down this allergy road). We are awaiting the results of the Celiac panel blood work.
In the meantime, we started the gluten-free diet this week. His sister is going milk-free at the same time. My son is not happy with the changes, but he is complying so far. I am trying REALLY hard to find foods he likes for his lunches (which he now has to take to school - before he could do the cafeteria lunches which are pretty good). He was a serious wheat-hound before this... and a picky eater. I have not tried to find any gluten-free breads or pastas yet - since I am pretty sure they won't measure up... and maybe some distance (time-wise) from the originals will help him accept some substitutes.
He really misses croutons and ice cream cones, so I will try to find some of those first I think.
I wish I could help with the bread question, but not yet. good luck,
I have realized this week that my son may have celiac - he has nasty rashes on lower legs and lower arms (both). Very itchy. The rash has been coming and going (sometimes just seems like dry skin) for a couple years.
Anyhow - how does the doctor do a biopsy of the skin? Does it hurt? I'm trying to find the least invasive method for confirming the problem (blood test panel for Celiac being processed this week).