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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.

What Tests Do I Need
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3 posts in this topic

Hello,

 

I think I have a problem with gluten.  I had a baby in February.  Shortly after his birth I started having sulfer burps that would start between 6 to 9 pm followed by diarrhea until 10 am the next day.  At first I thought I caught some stomach bug but after a few times noticed a pattern.  This problem has gotten more frequent and now I'm experiencing bloating and pain when eating and drinking.  I found a thread about nocturnal diarrhea on this site one night.  As I read the posts I almost started to cry.  I could have written any of them.  I decided to cut out gluten the next day.  All my symptoms went away within a few days.  Then I read that you need to eat gluten for the tests to come out accurate.  I began eating gluten again.  That is when I started having a lot of pain when eating anything with gluten.  It actually took about 3 days for the symptoms to come back.  I don't know what tests my doctor will order but I stopped eating gluten again because it hurts so much and I can't take very good care of my children with the symptoms.  I also passed a kidney stone about a week ago and have another still there.  I don't know if this could be related or not.

 

What I need to know is this:

 

How long before testing do I need to eat gluten?

 

What tests are important to have?

 

Is there any way to eat gluten and calm the symptoms of gas, pain and diarrhea so I can function well enough to care for my children?

 

Is there a problem with nursing a baby with Celiac Disease?

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Welcome to the board. :)

 

 

Hello,

 

I think I have a problem with gluten.  I had a baby in February.  Shortly after his birth I started having sulfer burps that would start between 6 to 9 pm followed by diarrhea until 10 am the next day.  At first I thought I caught some stomach bug but after a few times noticed a pattern.  This problem has gotten more frequent and now I'm experiencing bloating and pain when eating and drinking.  I found a thread about nocturnal diarrhea on this site one night.  As I read the posts I almost started to cry.  I could have written any of them.  I decided to cut out gluten the next day.  All my symptoms went away within a few days.  Then I read that you need to eat gluten for the tests to come out accurate.  I began eating gluten again.  That is when I started having a lot of pain when eating anything with gluten.  It actually took about 3 days for the symptoms to come back.  I don't know what tests my doctor will order but I stopped eating gluten again because it hurts so much and I can't take very good care of my children with the symptoms.  I also passed a kidney stone about a week ago and have another still there.  I don't know if this could be related or not.

 

What I need to know is this:

 

How long before testing do I need to eat gluten?

 

What tests are important to have?

 

Is there any way to eat gluten and calm the symptoms of gas, pain and diarrhea so I can function well enough to care for my children?

 

Is there a problem with nursing a baby with Celiac Disease?

 

Congratulations on your little one. Many celiacs find their disease is kicked off by a traumatic or major health event - pregnancy and childbirth has done that for more than one person around here. :(

 

To answer your questions:

For the most accurate tests, you need to be eating gluten (equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, or the 2-4 weeks prior to an endoscopic biopsy.  Since you have mostly been mostly eating gluten, get tested immediately.  As you have found, it can be difficult to next to impossible to reintroduce gluten after being gluten-free for a time. Get tested now.

 

The available tests are:

tTG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - newer tests

EMA IgA - detects more advanced disease

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable test

Endoscopic biopsy

 

To calm symptoms, do not overdo the gluten. 1-2 slices of bread is all you need - that could be half a sanwich, a muffin, or a small serving of pasta.  Some find eating gluten at night is helpful as it doesn't wreck your day... just your night.  :( A gluten challenge is needed to make you sick so the tests will detect celiac disease, if you are well they won't work... It's a bad system.

 

There is no problem nursing a baby with celiac disease, as far as I know.  Babies who have celiac disease may have issues with breast milk (gluten) if the mother is consuming gluten though.  Be aware that celiac disease is genetic and if you have it your little one has about a 1 in 10 chance of getting celiac disease. If she is consuming gluten, you will need to test her every couple of years or immediately if she shows symptoms.  Young children are harder to get an accurate test from so if tests are negative, and you see signs of celiac disease, she might have the disease in spite of what the tests say.

 

Here is some good reading:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

http://subscribe.imngmedicalmedia.com/onecount/validate_server/getCookie.php?return=http%3A%2F%2Fwww.jfponline.com%2Findex.php%3Fid%3D22143%26tx_ttnews%5Btt_news%5D%3D172034

http://pediatrics.aappublications.org/content/early/2014/01/07/peds.2012-3765.full.pdf

http://gut.bmj.com/content/early/2014/06/10/gutjnl-2013-306578.long#T2

 

Best wishes.

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Thank you.  I see my doctor tomorrow.  I'm going to ask for the tests you suggested and for a referral to a GI doctor.  I'm sure I'll be back here to learn more.  I'm about to look at the links you posted.  I appreciate you responding so quickly.  The information you gave is very helpful. 

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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
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    • What did you drink and where did you drink it?   NOTE if you drink something at a bar using their glasses your asking for trouble BEER IS EVERYWHERE in most bars and a CC hell.   If it was at home and a non grain based liqour then I would be really concerned that it might just be alcohol. I personally can not really drink much of anything any more. I love rum, and I cook with it sometimes in sautes. I also have rum extract/butter rum extract/and rum emulsion I use in shakes, homemade keto pudding/ mixed into dishes. and even add some to drink to give it a rum flavor lol.
    • I can only think of two things, 1 something you put on your potato was contaminated like the butter container could have crumbs in it or something like that as mentioned before, and you could be having a reaction to dairy or what ever was put in it.......IF it was just plain potato and you reacted with bloating and cramping you might have a carb issues, tad rare and most associated with additional auto immune diseases but could be in which case a diet of fats and protein would be your answer much like it is for me now days. What all have you eaten in the privous 8 hours including beverages, condiments, spices and foods?
    • They are gluten-free.  Did you use butter that might have gluten crumbs on it?  For me , it takes more than 2 hours to feel the effect of gluten- maybe something you ate before?  Maybe  stomach virus?
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