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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Genetic Markers From Quest
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6 posts in this topic

I have been online all day and beside my head hurting, I am more confused.

 

I had been gluten free for 3 months ( because I needed a life and to be able to work and I was practically disabled from pain ) when I figured it could not hurt to get some more info even though I am like a brand new person gluten free .  I asked for the genetic panel since I was already gluten free and no way in hell was I going back on gluten for any other testing.

 

 

HLA-DQ2 ( DQA1*05/DQB1* 02) Negative

HLA-DQ8 ( DQA1*03/DQB1*0302) Negative

 

I understand those primarily would be positive in celiac , but then these are listed, and since my doc did not even know genetic testing existed, I am not relying on her info.

It turns out she also tested for vitamin D which was off the chart low, which seemed odd if the celiac is indeed negative.

 

HLA-DQA1*01

HLA-DQA1*02

HLA-DQB1*0202

HLA-DQB1*0609

 

Any simple info would be helpful, I am just not grasping all the sites I have been to today.  Thanks so much!!!

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Are you taking vitamin D supplements?  Low vitamin D may be a sign of celiac or it could be other problems like inadequate intake for one  Did you have any other nutrients checked?  Is your iron level normal for example?  My practitioner told me that one early symptom of celiac is low iron in spite of a diet adequate in iron.  Other  problems with nutrient levels are vitamin B and magnesium,

 

There may be celiac genes not yet discovered.  You might have non-celiac gluten sensitivity which can have similar symptoms and just as bad..  You are positive on one test:  the response to a gluten free diet.  .

 

Glad to hear of your healing.  I hope you will figure out all you need to know.

 

D

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Maybe read Jebby's post on about not having the standard Celiac gene markers:

 

http://www.celiac.com/gluten-free/topic/105241-tested-negative-for-celiac-gene/#entry896973

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...and then, there are more sources that say "ONLY" DQ2 and DQ8 are celiac-related genetic markers. People like Jebby (Jess) are unique.

The research is new and she is in the smallest population of celiacs right now. 

 

Please understand, that the "celiac genes" are only related, not pre-determined as suggesting someone has celiac.

 

The genetic tests  are used as diagnostic elimination at this time, not as inclusion. 

 

And many people have HLA-DQ2 and DQ8 genes and never --repeat never--develop celiac. Read the rates of people with this gene who never express to see why it is only a factor, not a determinant.

 

Vitamin D deficiency occurs OFTEN in the absence of celiac. 

 

Vitamin D deficiency can occur for a number of reasons:

 
 

You don't consume the recommended levels of the vitamin over time. This is likely if you follow a strict vegetarian diet, because most of the natural sources are animal-based, including fish and fish oils, egg yolks, cheese, fortified milk, and beef liver.

Your exposure to sunlight is limited. Because the body makes vitamin D when your skin is exposed to sunlight, you may be at risk of deficiency if you are homebound, live in northern latitudes, wear long robes or head coverings for religious reasons, or have an occupation that prevents sun exposure.

You have dark skin. The pigment melanin reduces the skin's ability to make vitamin D in response to sunlight exposure. Some studies show that older adults with darker skin are at high risk of vitamin D deficiency.

Your kidneys cannot convert vitamin D to its active form. As people age their kidneys are less able to convert vitamin D to its active form, thus increasing their risk of vitamin D deficiency.

Your digestive tract cannot adequately absorb vitamin D. Certain medical problems, including Crohn's disease, cystic fibrosis, and celiac disease, can affect your intestine's ability to absorb vitamin D from the food you eat.

You are obese. Vitamin D is extracted from the blood by fat cells, altering its release into the circulation. People with a body mass index of 30 or greater often have low blood levels of vitamin D.

 

Celiac is a possible reason, yes but not the only reason. My husband (not a celiac) had a D deficiency, but he avoids the sun (he is a very

white-skinned blue-eyed blonde Irishman who burns easily) and we lived in a Northern climate.

 

Consider everything before thinking...it must be celiac.

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...and then, there are more sources that say "ONLY" DQ2 and DQ8 are celiac-related genetic markers. People like Jebby (Jess) are unique.

The research is new and she is in the smallest population of celiacs right now. 

 

Please understand, that the "celiac genes" are only related, not pre-determined as suggesting someone has celiac.

 

The genetic tests  are used as diagnostic elimination at this time, not as inclusion. 

 

And many people have HLA-DQ2 and DQ8 genes and never --repeat never--develop celiac. Read the rates of people with this gene who never express to see why it is only a factor, not a determinant.

 

Vitamin D deficiency occurs OFTEN in the absence of celiac. 

 

Vitamin D deficiency can occur for a number of reasons:

 
 
 

You don't consume the recommended levels of the vitamin over time. This is likely if you follow a strict vegetarian diet, because most of the natural sources are animal-based, including fish and fish oils, egg yolks, cheese, fortified milk, and beef liver.

Your exposure to sunlight is limited. Because the body makes vitamin D when your skin is exposed to sunlight, you may be at risk of deficiency if you are homebound, live in northern latitudes, wear long robes or head coverings for religious reasons, or have an occupation that prevents sun exposure.

You have dark skin. The pigment melanin reduces the skin's ability to make vitamin D in response to sunlight exposure. Some studies show that older adults with darker skin are at high risk of vitamin D deficiency.

Your kidneys cannot convert vitamin D to its active form. As people age their kidneys are less able to convert vitamin D to its active form, thus increasing their risk of vitamin D deficiency.

Your digestive tract cannot adequately absorb vitamin D. Certain medical problems, including Crohn's disease, cystic fibrosis, and celiac disease, can affect your intestine's ability to absorb vitamin D from the food you eat.

You are obese. Vitamin D is extracted from the blood by fat cells, altering its release into the circulation. People with a body mass index of 30 or greater often have low blood levels of vitamin D.

 

Celiac is a possible reason, yes but not the only reason. My husband (not a celiac) had a D deficiency, but he avoids the sun (he is a very

white-skinned blue-eyed blonde Irishman who burns easily) and we lived in a Northern climate.

 

Consider everything before thinking...it must be celiac.

I understand the vitamin D issue, I work in the medical field, but since I walk daily without sunblock, am not overweight, am light skinned, and already take a supplement, it came as a surprise.  My symptoms of joint and muscle pain, severe reflux, insomnia, night sweats, severe PMS, muscle weakness, fatigue and bloating all disappeared after going gluten free.  I went from a runner to being barely able to function.  I was just curious what other genetic variants were possible, as I also have a rare clotting disorder, so I tend to be the odd medical mystery.

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You could have NCGS and still suffer all those symptoms.

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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