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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Ksee

Obviously A Gluten Issue

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*note to moderator: please let me know if this topic belongs in another forum

 

So here is what happened. I picked up a bag of dried barley, wanting a change of taste and variety of whole grain. I used it instead of rice in a veggie dish I often make. Within a half hour of eating, I was in a lot of pain that continued for hours and throughout the night. My stomach wouldn't empty either which of course prolonged matters. 

I have had the diagnosis of irritable bowel syndrome for years along with many symptoms I have now realized indicate a high suspicion corresponding with a diagnosis of a gluten problem. I don't have a supportive physician. If you ever realize a link between one event and pain (Doctor it hurts when I do that....) believe me, avoidance naturally follows. 

I am now about five days without foods I have recognized as containing gluten and there is a noticeable difference. My daily abdominal pain has certainly improved but it hasn't been long enough to notice improvement of my other (long list here) of symptoms. 

The improved abdominal symptoms alone are enough to convince me to continue avoiding gluten but I have questions if someone could help please?

 

1. Is it possible for symptoms to improve so quickly? Understanding how the digestive system works, there probably has not been time to clear all the gluten from my body and I'm not sure I have eliminated all gluten containing foods. 

2. Is it more likely the increased fiber consumption (substituting beans for pasta) has calmed IBS symptoms?

3. How often does someone have an allergy to a single grain (barley)?

4. Is barley commonly used in foods that could of been causing previous symptoms? (I ask this because I have never had a food cause a reaction as severe or quickly).

 

Without a better understanding of what may be happening, I am going to continue to avoid gluten for two reasons. I want to find out how much improvement occurs and I do not want to have another experience with that sort of pain again. Besides that, I am enjoying at least partial relief of symptoms I've had for years. It's almost like living with a broken bone for years and suddenly discovering pain relievers. I rapidly became a "non-gluten addict". LOL

I know this is difficult to answer without proper testing. I understand the difference between celiac, sensitivity and intolerance to gluten or allergies to single grains. Insight and tid-bits would be appreciated.

Thank you

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Food should be cleared thru the system in 24 hours.  Obviously, if you are constipated, it might take a little longer.

 

It is possible to be allergic to barley. So this could just be a barley issue.

 

  Barley isn't in a lot of foods.  It is labelled soemtimes as "malt" usually in a sweet item or its a grain in a bread or soup.

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Barley has gluten in it.

 

If you plan to get the blood test you have to get back on Gluten.

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Yes, barley has gluten in it.  But this sounds like the OP was happily eating wheat products and tried a big bunch of barley.  This is when the issue occurred.  This makes me think it may just be barley. 

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Yes, barley has gluten in it.  But this sounds like the OP was happily eating wheat products and tried a big bunch of barley.  This is when the issue occurred.  This makes me think it may just be barley. 

I probably didn't describe that well. I wasn't happily eating :) I only haven't ever had something I could identify as a cause of pain, bloating, D/C, nausea and so forth. I have diagnosed autoimmune issues and we know when the body attacks itself, there can be a lot of overlap. I should of asked if anyone accidentally found partial relief by cutting back on gluten which led to realizing where there problems came from. I also should ask if anyone has had even partial relief so quickly. 

Another question is how many people test sensitivity at different levels to each type of gluten and if it is common for one type of gluten to be more of a problem than another for some people?

I'm not sure if anyone knows this but antibodies can be measured and diagnosis is possible without the typical testing/withdrawal/challenge approach. If anyone is interested, there is a great article in the American Journal of Clinical Nutrition: http://ajcn.nutrition.org/content/69/3/354.full

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Hi Ksee

That article is very interesting (and long! I need to re read as I skimmed. ) It was written in 1999, and testing has developed since then, with more sensitive tests. However, I have yet to find celiac tests which do not require eating gluten for a period beforehand.

Gene testing does not require it, but the result is not a yes or no, but an indicator of propensity to develop the disease.

If you have only been gluten-free a short time, you could try and get tested ASAP. Or you could test by removing gluten and evaluating your response (many here have done that). Sadly, definitive tests by blood and biopsy require gluten ingestion.

I hope whichever route you go you get relief. I had a very noticeble difference quickly.

Good luck, welcome, ask questions :)

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Hi Ksee

That article is very interesting (and long! I need to re read as I skimmed. ) It was written in 1999, and testing has developed since then, with more sensitive tests. However, I have yet to find celiac tests which do not require eating gluten for a period beforehand.

Gene testing does not require it, but the result is not a yes or no, but an indicator of propensity to develop the disease.

If you have only been gluten-free a short time, you could try and get tested ASAP. Or you could test by removing gluten and evaluating your response (many here have done that). Sadly, definitive tests by blood and biopsy require gluten ingestion.

I hope whichever route you go you get relief. I had a very noticeble difference quickly.

Good luck, welcome, ask questions :)

It's difficult to find comprehensive articles online. I found that one hopeful because I don't have a supportive doctor.  This limits my access to testing and information.

Still, some things just can't be found in studies and articles. 

Thank you all for answering. I was confused by the quick improvement. Everything I could find indicated it took weeks, months or even a year or more for symptoms to resolve. 

On the other hand, common sense told me that when someone quits banging their head against a wall the pain will quickly begin to decrease. 

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There does look to be some excellent info in that article.

Hopefully you will find more here, there's a bunch of savvy folks here. There is an excellent book that IrishHeart recommend, I will hunt down the reference if she doesn't pop up with it :)

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This is a website for an actual real medical center that treats and studies Celiac Disease. Maybe you could print a few things and show the doctor? A doc should find it reliable.

http://www.cureceliacdisease.org/

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Ksee, quite a few of us noticed a marked improvement within days. And quite a few who did slid back into strong symptoms after that. In my case, I developed new intolerances (soy, corn, and salicylates). Others just experienced lots of ups and downs as they healed. So if you find that you start feeling sick again, don't think it's because gluten WASN'T your problem. Stick with it and you will see LASTING results.

 

As for your doctor, if he is that contentious, I would find a new one. Either that or explain to him that he is working for YOU, not the other way around, and if you want to be tested for celiac, he should just do the test.

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Thank you both. Yes I am looking for new options in physicians. This silly girl actually stamped her foot at me when I didn't respond the way she wanted. There is no way to respond to that except to turn away just as if dealing with a small child.

Bart, I think I'm mostly surprised at the way this came to my attention. All the grain I've been eating, it was hard to believe a single event would be so definitely a problem previously unnoticed. I hesitated before registering for this site because I thought I was probably imagining things and didn't want to insert myself into conversations of people who were really sick.

This has really blown my mind :blink: 

Thanks again for answering.  

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I spent my first few weeks here lurking and saying 'that's me, that's me'.

I had tests and biopsy, but couldn't last on a gluten challenge, and my tests were negative. My gene tests were negative too, and my G I diagnosed Non Celiac Gluten Intolerance NCGI. I ended up on a whole foods diet and uncovered several food intolerances, but I feel better than I have in 20 years.

We all have stories of our gluten-free journeys, and folks here will be happy to help with yours :)

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