trents

I hear you. My extended family is very good about factoring in my celiac disease safety needs when making family celebration meal plans but sometimes it breaks down in the spur of the moment decisions to "Oh, let's go out and get some teriyaki" or the like. Especially when my brother in law comes into town 'cause he's pretty particular about what he likes to eat. So, sometimes I just say, "You guys go ahead without me. I'll find some leftovers." But, still, I admit to feeling a little left out at such times and a little like a 5th wheel.

Yes, probably slipped his mind. Grace is in order here is my thought.

But if you were not in the office and would not not have access to your phone, how could he inform you of the change in venue?

Read and understood with sympathy.

Food for thought, excuse the pun. For future reference, is there an officemate you can count on to alert you when the group makes sudden changes in plans like that? Someone who is truly looking out for you?

Okay, I'm taking a guess here. We are used to hearing in layman terms that having either the HLA-DQ2 or the HLA-DQ8 gene, either heterozygous or homozygous, presents the possibility of developing active celiac disease.

So, I'm guessing that the HLA-DQ2 gene is actually a range of variants (2.01-2.99) with HLA-DQ 2.5 being in the centerpiece of the range.

I'm also guessing that "permissive" is equivalent to "possessing the possibility" to develop active celiac disease and does not address the issue of hetero vs. homozygus per se.

But the fact that 2.01,2.01 is a couplet may indicated homozygousity?

All wild guesses.

No. It's over the counter. Readily available on Amazon. Good bio availability but shelf-life is not as good as thiamine mononitrate which is the most common form found in over the counter vitamin products.

Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease.

Welcome to the forum, @QueenBorg!

Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?

Welcome to the forum, @Garlic! This kind of question is always a gray area and the answer must be nuanced. Ideally, every celiac should stay away from any potential source of gluten, however small. But we don't live in an ideal world and sometimes it is appropriate to take risks as long as the risks aren't too large and the consequences not too drastic. Realize these companies work hard at covering their butts against possible litigation so they often err on the side of abundant caution to guard against this. And Costco is a very conscientious organization as well. In reality, cross contamination from shared equipment is usually not a significant threat except to those celiacs on the ultra sensitive end of the spectrum. Do you fit that category? Note, we are talking about cross contamination from using shared equipment, not other sources of CC such as happens in cultivation, transportation and storage. I mention that because some types of products are typically heavily cross contaminated in these other ways. A prime example is dried legumes.

"He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body?

"She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong!

This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test.

The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition.

The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article:

Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.

Welcome to the forum, @ARutherford!

Have you considered that your child may have gluten intolerance/celiac disease? It's not an allergy, it's an autoimmune response to the ingestion of gluten. It cannot be diagnosed by allergy testing but there are some specific antibody blood tests that any physician can order to check for it. Ask for a "total IGA test" and a "TTG-IGA" test. 

Good idea, @LynnM! That would be helpful to other celiacs who find themselves on the more sensitive end of the spectrum. You might also want to send them information about how to initiate the process with GFCO.

But just a word of caution here, don't be surprised if the company is reluctant to pursue this certification as it can tie their hands with regard to changes in formulation in the future. Manufacturers often make ingredient decisions not only based on desired product outcomes but on cost factors. It can also put them at a liability risk should some ingredient supplier introduce an ingredient that was cross-contaminated with gluten without knowledge and cause someone to have a reaction. Testing for gluten-free certification is not done as frequently as consumers imagine and products can and do get out of spec at times. And once you slap a gluten-free certified label on a product, you are instantly open to possible liable suites. 

Cutting out major sources of gluten in one's diet is pretty easy. It's the hidden sources where it shows up in products you would never expect to find wheat in (like soy sauce and Campbell's tomato soup, most canned soups, many pork n' bean products), medications, supplements, oral hygiene products, etc. that are the things that trip you up. And then there is eating out in restaurants where you order something that should be gluten free but it's cooked along with things that have wheat. Eating out is the biggest threat to eating gluten free. Achieving a truly gluten free diet involves a real learning curve.

It concerns me that you seem to want to ease into this gradually. That just sounds too casual to me and screams of not taking this seriously. The longer you put off achieving a truly gluten-free life style, the longer your body will continue to be harmed. In your first post in your thread you seemed concerned about harm that already might have been done. Now you seem to be singing a different tune.

This may be helpful to you: 

Yes, the development of additional food intolerances is a common spinoff of celiac disease.

To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.

Have you had B12 levels checked?

Maltodextrin is typically made from corn.

Are you taking any vitamin and mineral supplements to address the deficiencies and if so, are they gluten-free?

Welcome to the forum, @AnneBSunflower!

Can you be more specific about the gluten antibodies? Which ones were found? Do you have access to the report and can you post the results?

What is a "GI map"? How was this done? Is this a fecal matter test?

Are you still consuming oats? Even "Gluten-free" oats?

Have you checked all meds and supplements for possible gluten fillers or casings? Oral hygiene products?

Are you sharing cooking facilities with wheat eaters?

Welcome to the celiac.com, @Rejoicephd!

1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten Free" symbol on a package that is even better, indicating that there is no more than 10ppm of gluten. 

2. When you are choosing "gluten free" items from a restaurant, realize that it only means gluten is not an intentional ingredient. It does not rule out CC (Cross Contamination) caused by those cooking and preparing the food back in the kitchen who may be cooking it on the same surfaces or in the same pots/pans as they are gluten containing food items and handling it with the same utensils they are handling gluten-containing food.

3. About 8% of celiacs react to the protein avenin in oats as they do the protein gluten in wheat/barley/rye. In addition, some cultivars of oats actually contain the protein gluten. Many celiacs also react to the protein casein in dairy products as they do gluten or they are lactose intolerant. Eggs, soy and corn are also common "cross reactors" in the celiac community but oats and dairy are the most common.

If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed.

Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however.

Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.

Welcome to celiac.com, @Wamedh Taj-Aldeen!

Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician?

Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA.

Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated.

It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability. 

We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems.

But to answer your questions:

1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest.

2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking. 

3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability.

I hope my thoughts prove helpful to you.

Welcome to the forum, @dominiqueccms!

Unfortunately, your story is all too common. Some older physicians are dismissive when it comes to gluten intolerance disorders and have this attitude like, "It's the latest fad disease." My advice to you is to get another doctor who has more current knowledge in this area and will take this seriously. In the meantime, this might be helpful:

In six months to a year you would do well to get your antibody numbers rechecked to see if you are succeeding in your efforts to eat gluten free. Do you have the numbers from the original testing?

By the way, you need to repost those numbers in your first post and add the reference ranges. Different labs use different reference ranges so the test scores by themselves aren't very helpful, especially when the values may be borderline positive. It would need to be in a new post window as the edit function times out quickly such that you can't go back and make changes to the original.

What symptoms do you have? What has led you to investigate the possibility of having celiac disease?

Welcome to celiac.com, @Cat M!

Were you consuming generous amounts of gluten for a significant period of time (weeks/months) before the blood draw and test results you posted? I ask because you say you would like to be retested after consuming gluten for a few weeks. Current guidelines for the gluten challenge call for the daily consumption of at least 10g of gluten (the amount found in about 4-6 slices of wheat bread) for at least 2 weeks. But I would go for longer than that to be sure, say 4 weeks. Testing is invalid when people have been gluten free or even skimping on it.

@LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests?

So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?