JennyC

You really need your blood work results. It is possible to have positive blood work and a negative biopsy and still be diagnosed with celiac disease. You may want to give the doctor a call to see if your results are in!

Somebody needs to reevaluate the protocol on this and change the entire standard of care here. It sure sounds foolish to me the way it is.

Yes, it is ridiculous. It is slowly beginning to change. Unfortunately, it was stated in an article in the New England Journal of Medicine that after new research comes to light it takes an average of 17 years for doctors to adapt new practices with their patients!

Making a grilled cheese is hard to me. The cheese gets totally absorbed into the bread. Not may, but some things just can't be reproduced.

That means you have to add extra cheese!

This sounds like a fun dish to experiment with! Can it be done without cheese? I don't tolerate cheese well. Thanks!

Sure! The little amount of cheese that is added at the end is only used to increase the creaminess. Risotto is plenty creamy before the cheese!

Hi Jenny. Okay now I'm confused. lol. The other poster stated the tests listed below are the ones needed. I have bolded the ones that you stated (to help me get all this.)

tTG IgA/Anti-tissue transglutaminase antibodies

EMA IgA/Anti-endomysial antibodies

AGA IgA/Anti-gliadin antibodies

AGA IgG/Anti-gliadin antibodies

total IgA

But it looks like you are saying a third test is the tTG IgG/Anti-tissue transglutaminase antibodies which she didn't list. And you didn't list the EMA, or both AGA IgA and IgG.

HELP.

IgG tTG--This can be useful in case the patient is IgA deficient

EMA--The doctors never even ran this on my son, nor are we learning how to run it in my clinical laboratory science program. It is thought to be more specific to celiac, but is less sensitive.

AGA IgA/IgG--These are useful, but not the definitive test for celiac.

I'm sorry if I was not clear earlier, all of the above tests are useful as a part of a panel, but the most diagnostic test is the IgA tTG. This is because the autoimmune aspect of celiac disease is directed toward tissue transglutaminase (tTG). This occurs in the intestine, which is one of a small handful of places in the body where IgA antibodies are produced. Other examples include breast milk or saliva.

Thank You for the responses. For those that chose not to do the endoscopy how do you handle school? My fear is that without a clear dx that the school will not take it as serious. We did go gluten-free for a couple of weeks. She seemed after a couple of days to be feeling better. Then she got into bread & within 20 minutes was laying on the couch whining & saying her tummy hurt. She also has unexplained anemia(not iron def) all other bloodwork is good. gluten-free is very difficult with 3 other kids in the house! Thank again

Amy

We are going to handle school just like anyone would who had the biopsy. My son is diagnosed with celiac, but we chose not to biopsy. No one ever questions his diagnosis. As long as you have a doctor on board with you to write a note or a 504 plan, you should have no problems.

The most important tests to get for celiac are:

IgA tTG

Total IgA

IgG tTG

The IgA tTG test is the main test for celiac. It's a good idea to get the other tests as well, but make sure that the IgA tTG and total IgA are done.

The genetic test can only exclude the possibility of celiac. Many people have the genes they screen for but do not develop celiac. The genetic test is just another piece to the puzzle for those having a difficult time with a diagnosis, or it could even be used as a screening tool--but it's sadly not.

That sounds super good! I might make use that as a dinner base tonight. I was trying to figure out what I was doing.

Oh, it was good! I'm adding it to my regular dinner rotation. Once you get the rice in the pan, risotto is not too time consuming. Last time I made it, I was doing dishes while I was adding the broth. The key to great risotto is to add the warm broth slowly and do not over stir because the starch from the rice needs to be released slowly to get the best texture. I only stir the rice after each broth addition.

I love risotto. I always end up making it the main course. Here's a recipe from epicurious that I made the other night:

Lemony Risotto with Asparagus and Shrimp

3 cups reduced-sodium chicken broth

2 cups water

3/4 pound asparagus, trimmed and cut into 1-inch pieces

1 small onion, finely chopped

4 tablespoons unsalted butter, divided

1 1/4 cups Arborio rice

1/4 cup dry white wine

3/4 pound medium shrimp, peeled and deveined

1 tablespoon grated lemon zest

1/4 cup grated parmesan

2 tablespoons chopped flat-leaf parsley

PreparationBring broth and water to a simmer in a medium saucepan. Add asparagus and simmer, uncovered, until just tender, about 4 minutes. Transfer asparagus with a slotted spoon to an ice bath to stop cooking, then drain. Keep broth at a bare simmer, covered.

Cook onion in 2 tablespoons butter with 1/4 teaspoon salt in a 4-quart heavy saucepan over medium heat, stirring occasionally, until softened, about 5 minutes.

Add rice and cook, stirring constantly, 1 minute. Add wine and simmer, stirring constantly, until absorbed.

Stir in 1/2 cup broth mixture and briskly simmer, stirring frequently, until absorbed. Continue adding broth, 1/2 cup at a time, stirring frequently and letting each addition be absorbed before adding the next, until rice is creamy and tender but still al dente (it should be the consistency of a thick soup), about 18 minutes. (There will be leftover broth mixture.)

Stir in shrimp and cook until just cooked through, 2 to 3 minutes.

Stir in asparagus, zest, remaining 2 tablespoons butter, parmesan, parsley, and pepper to taste. (Thin risotto with some of remaining broth if necessary.)

It sounds like she still might be recuperating from the stomach bug. Pediasure says gluten free right on the package, but if her tummy is still upset I'm not sure that she would want that. Gummy Vites also say gluten free right on the label. According to a study that I read and also my son's gastroeneterologist it's not very common for young kids with celiac to develop lactose intolerance. I didn't know that at the time, and I had my three year old son on a low lactose diet for about the first six months after diagnosis. I used to buy lactaid milk and give him half of a chewable lactaid with meals containing lactose. It sounds like you just need to get her eating again which can be hard to do after a stomach bug. Rice chex is gluten free, and most other versions of Chex are transitioning to gluten free, so be sure to read the labels. Popcorn is also generally gluten free, especially if you buy plain! Yoplait yogurt will list any gluten in their ingredients, so might try some of their products. Popsicles might also be good to get her eating again. Good luck!

The fact that he's HLA-DQ-02 positive means that it is possible, genetically, for him to have celiac. Given his symptoms, he may want to consider going gluten free for a trial period to see if his symptoms improve.

It's great that his tTG levels are normal, that's cause for celebration! His IgE is very high and I would speak to a doctor about this. IgE are related to "traditional" allergies, such as Hay fever or other food allergies, parasitic infections, and inflammatory responses. Does your son have environmental allergies or other food allergies? If it is other food allergies, he should have a reaction shortly after consuming the allergen. If he does not have any allergies that you are aware of, maybe an allergy test should be considered.

Allergy testing information:

Open Original Shared Link

There are many possible reasons for high IgE levels:

Open Original Shared Link

Woohoo! Score!

Yes. The wheat is a starting product in a flavoring in the oil. That component is processed in a way that is analogous to distillation. They have been ELISA tested to be <20 ppm, so I consider them safe, cross contamination issues aside. In regards to cross contamination, I don't even think the employees touch the fries! They open them up, dump them in dedicated friers, then use the metal tool to put the fries into the containers. I trust ELISA methods and processes such as distillation.

Tissue transglutaminase (tTG) deaminates the gluten peptide, so a deaminated anti-gliadin test is more specific for celiac disease. Celiac may not be the only issue at hand, but celiac can cause a lot of health issues.

You had too much butter. There's no recovering from that once you start baking, you have to start over. I slowly add the butter, and often the crust does not require the entire amount of butter. After the butter is added you should have tiny light colored cookie clumps with some crumbs. If you press your finger into the crumbs your finger should not have a lot of excess butter. They should not look wet. If you add too much butter, you can add more cookie crumbs to the mixture before it's baked. It's a trial and error process.

I really don't think his theory makes sense from a pathophysiological standpoint. I don't see how adding a sugar to the protein, in the case of A and/or B antigens, would alter one's response to their diet so dramatically. If someone knows, please elaborate.

My son was breastfed and had similar poop. It was yellow, liquid with mucous and what looked like tobacco threads in it and VERY STINKY. He would also spit up all the time. He has celiac disease and no allergies.

You also need the IgG tTG and IgA tTG. Along with total IgA, those are the most important tests for diagnosing celiac disease.

where can i find garfava bean flour? are there any substitutes that would work well?

Anything that has a high protein content should work well. You could try fava bean flour, garbanzo bean flour, soy flour, or sorghum flour. I think that out of those sorghum and fava bean flours taste the best. Sorghum tends to turn light colored baked goods brown and has less protein than fava bean flour.

Portland Oregon/Vancouver Washington for sure!!

I second that! We have lots of restaurants and shopping available. I have three gluten free pizza places within a 10 minute drive from my house! The best part is that in Vancouver Washington there is a little store that is entirely gluten free!

I would be a little concerned with the birds, definitely do not have them anywhere near where food is prepared or consumed. You will need to replace anything that can not be thoroughly cleaned. That includes all anything that is wood or plastic and/or nonstick that is scratched. You will also need to replace all cutting boards, colanders and toasters. I did not feel comfortable using our old pots, pans, and utensils, so over time I replaced everything. I also replaced our cookie sheets, spatulas, cookie cutters, sifter, pizza cutters, waffle iron, food processor, cake pans, and cast iron pans. You also need to make sure that you clean your kitchen very well. I even put new drawer liners in the kitchen. It seems overwhelming at first, but you will be surprised at how fast your family adjusts.

I thought I'd add my two cents. Cadbury is made by Hershey's. Hershey's is a very unfriendly company to those on a gluten free diet, so I would not buy their products on principle. Also these eggs contain "natural flavors" so they will not tell you if they are truly gluten free! I need to do more research on glucose syrup before I make a decision about that.

Mars is a gluten free friendly company. Dove truffle eggs DO have gluten free ingredients...and they are DELICIOUS! (I didn't even buy any for my son's Easter basket for the fear that I'd eat them all! )

Can you get blood tests for celiac and IgA deficiency? Blood tests are more respected by doctors, and I think it will be easier for you in the long run if you have the blood work. If you are IgA deficient, then you will have false negatives for any IgA related tests, including the most specific test for celiac: tTG IgA. I hope this helps!

No, you do not need to fast for celiac testing.