Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

Obviously A Gluten Issue
0

12 posts in this topic

*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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

Barley has gluten in it.

 

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

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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 :)

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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/

0

Share this post


Link to post
Share on other sites

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.

3

Share this post


Link to post
Share on other sites

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.  

0

Share this post


Link to post
Share on other sites

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 :)

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,367
    • Total Posts
      917,517
  • Topics

  • Posts

    • 9 year Old going through testing
      Yes, ATTITUDE, in all caps, and i am in the field of health care...!
    • TTg IAG > 100 but also Hasimoto's
      Thanks for pointing all that out Gemini! I look forward to finally getting off gluten for good to see how much everything changes.  I never thought about the absorption of my synthroid with all my other issues.  I just see my primary dr. for all my thyroid, perhaps I will ask for a referral to an endo dr for further evaluation and treatment.  Thanks for all the information! 
    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed www.bing.com and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined