Confused about my history of symptoms

[gjmama]

Hello, I'm new to this site, and very glad to be here!   I want to provide you a very brief history, and then one question. 

3 yrs ago I had an endoscopy because of symptoms (chronic nausea, bloating, D...). Biopsy came back positive for villi blunting. Dr said Celiac.

So, I went off gluten and lactose for a year and felt great (that was 2014).  After a year of being off gluten and lactose, I began to eat gluten again (but not lactose) and continued to eat gluten freely for an entire year (2015).  Now, here's where it starts getting confusing. I felt great for that year eating gluten! How could that be??

But then this year my symptoms came back. So, I went back off gluten again. I am gluten free now, and if I eat gluten I have the same symptoms (nausea, bloating, D...).

Ok, so that's my history.  I am convinced I have celiac now and never plan to eat gluten again. However, my question is:  How could I have felt fine all last year eating gluten? I understand celiac can by symptom-free. However, I do have symptoms now if I eat gluten. Thanks for your help  

[kareng]

21 minutes ago, gjmama said:

Hello, I'm new to this site, and very glad to be here!   I want to provide you a very brief history, and then one question. 

3 yrs ago I had an endoscopy because of symptoms (chronic nausea, bloating, D...). Biopsy came back positive for villi blunting. Dr said Celiac.

So, I went off gluten and lactose for a year and felt great (that was 2014).  After a year of being off gluten and lactose, I began to eat gluten again (but not lactose) and continued to eat gluten freely for an entire year (2015).  Now, here's where it starts getting confusing. I felt great for that year eating gluten! How could that be??

But then this year my symptoms came back. So, I went back off gluten again. I am gluten free now, and if I eat gluten I have the same symptoms (nausea, bloating, D...).

Ok, so that's my history.  I am convinced I have celiac now and never plan to eat gluten again. However, my question is:  How could I have felt fine all last year eating gluten? I understand celiac can by symptom-free. However, I do have symptoms now if I eat gluten. Thanks for your help  

You healed the damage and then it took a while to get enough damage that you felt it was bad enough to notice

[gjmama]

Kareng, thank you! Wow, that's so amazingly simple lol. 

[mama.liz07]

So, does that mean once someone is gluten free for a year or so (or however long it takes to heal) that person might not have symptoms if they accidentally eat gluten?  

If if that is true, how do you know if you are glutenated....and thus avoid whatever the problem food is in the future?  

[kareng]

5 minutes ago, mama.liz07 said:

So, does that mean once someone is gluten free for a year or so (or however long it takes to heal) that person might not have symptoms if they accidentally eat gluten?  

If if that is true, how do you know if you are glutenated....and thus avoid whatever the problem food is in the future?  

Any food with gluten is to be avoided, even if you don't think you feel any symptoms.  Those are the " problem" foods.

Some  people don't have especially noticeable symptoms from a one time small amount of gluten.  But, if you keep eating gluten,  it will damage you.  

[kareng]

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"Eating any gluten, no matter how small an amount, can damage the small intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. Antibody levels take a long time (sometimes more than a year) to normalize after a person has stopped eating gluten."

[jddh]

It's easy to assume that symptoms=gluten and no symptoms means it's ok! We've all done it.  But you must avoid gluten at every meal if you have a confirmed diagnosis.

Instead of waiting for symptoms, read up on labelling laws, ingredient checks, and certification programs. Your body will thank you.

[cyclinglady]

Here is my story.  No intestinal issues when I was diagnosed.  Was in for a routine colonoscopy (yep, over 50 years old) when my GI suspeced celiac disease because I was anemic (have two types of anemia actually).  He ordered a celiac disease blood panel and added an endoscopy and the rest is history.  Healed up and then got glutened last summer.  I had severe intestinal issues.  I was not sure I had really been glutened.    Six weeks later, my GI retested my antibodies.  He thought  Sibo but it was just a celiac disease flare-up.  celiac disease symptoms can change.   Took 3 to six months to recover and I still can not confirm what actually glutened me!  

[mama.liz07]

Thanks everyone.  I do know how serious it is to avoid gluten, that is why I'm concerned.  If you don't feel symptoms when you accidentally ingest gluten, how will you know to avoid it.  For example, if you're eating a brand that is supposedly safe, but really has problems with cross contamination, how would you know?  Seems you could eat a little gluten everyday and not know and then end up with quite a bit of damage before you realize what's going on.  Eek.  

[kareng]

1 hour ago, mama.liz07 said:

Thanks everyone.  I do know how serious it is to avoid gluten, that is why I'm concerned.  If you don't feel symptoms when you accidentally ingest gluten, how will you know to avoid it.  For example, if you're eating a brand that is supposedly safe, but really has problems with cross contamination, how would you know?  Seems you could eat a little gluten everyday and not know and then end up with quite a bit of damage before you realize what's going on.  Eek.  

This myth that something supposedly safe will gluten you is just a bunch of fear mongering.  Like any other food, there are occasional recalls on labelled gluten-free foods, but usually it's not for gluten.

 If you are really worried that companies are somehow slipping gluten in foods that are certified gluten-free or have no reason to have gluten, only eat 1 ingredient foods you can wash off first.  Call or email companies and find out what thier processes are.  Learn about foods and if it even makes sense that gluten could be near a product.    Subscribe to Gluten Free Watchdog and other large Celiac groups so you are aware when something, like Cheerios , has issues with its gluten-free practices.  

[mama.liz07]

Thanks Kareng!  I'm still new to this.  Funny you mention Cheerios because that was the product I was curious about (wondering if they are really safe).  Gluten Free Watchdog...I'll check it out!  :-)  

Thanks for your help...sorry to commandeer this post.  

[kareng]

6 minutes ago, mama.liz07 said:

Thanks Kareng!  I'm still new to this.  Funny you mention Cheerios because that was the product I was curious about (wondering if they are really safe).  Gluten Free Watchdog...I'll check it out!  :-)  

Thanks for your help...sorry to commandeer this post.  

Read ingredients, just in case.  Some of the smaller companies seem to miss barley malt.  The bigger companies or completely gluten-free companies ( like Glutinos or Schar) usually will do a good job.  The real problems I have seen are small or local companies.  Like the guy that sells at the farmers market or some start up " healthy" company that seems to think barley gluten-free ( in that case, reading the ingredients will clue you in).  I do buy from a family that sells baked goods at the farmers market because I have talked to them about thier practices.  A couple of family members have a severe gluten intolerance and can't handle any cc.  Talk to restaurants-  some are very good or have almost no gluten in any of the foods.   

You are lucky not to react.  You can eat out occasionally, and not react if there is a problem.  An occasional light glutening  ( I don't mean once a day or even once a week) should heal just fine in a short time.   Your sensitivity may change over time, as immune systems seem to change over time.  

 

[gjmama]

Interesting reading all your responses....very helpful.

I share Mama.Liz's question...how would you know if you are being glutened on a regular basis if you don't show any symptoms? I understand about calling companies to check if their "gluten free" product is produced in a facility that also handles wheat.  And talking to restaurants.

But I live in a household with many gluten products used in cooking, baking, etc.  Of course, I'm extremely careful and so is my family.

However, I read somewhere a situation about a girl who was having celiac symptoms and finally figured out her dishwasher wasn't getting her dishes clean enough. They made some changes in their method of dishwashing and the symptoms cleared up. If she hadn't had any symptoms, she wouldn't have known she was being glutened until, perhaps, her intestines had been very damaged. It seems that symptoms, although not pleasant, are a wonderful warning sign. My question is: are there other ways to find out if you're being glutened on a regular basis without the typical celiac symptoms you can feel? 

[kareng]

1 minute ago, gjmama said:

Interesting reading all your responses....very helpful.

I share Mama.Liz's question...how would you know if you are being glutened on a regular basis if you don't show any symptoms? I understand about calling companies to check if their "gluten free" product is produced in a facility that also handles wheat.  And talking to restaurants.

But I live in a household with many gluten products used in cooking, baking, etc.  Of course, I'm extremely careful and so is my family.

However, I read somewhere a situation about a girl who was having celiac symptoms and finally figured out her dishwasher wasn't getting her dishes clean enough. They made some changes in their method of dishwashing and the symptoms cleared up. If she hadn't had any symptoms, she wouldn't have known she was being glutened until, perhaps, her intestines had been very damaged. It seems that symptoms, although not pleasant, are a wonderful warning sign. My question is: are there other ways to find out if you're being glutened on a regular basis without the typical celiac symptoms you can feel? 

About 6 months after diagnosis, you should get a re- test of your antibodies.  Then every year after.  That would tell you something.

Also, you may want to stop the gluten baking.  That flour goes everywhere and can take a day to settle.

Some people have symptoms they didn't realize we're connected to gluten.  It isn't all " stomach" issues.  Migraines are one big one.  You may find that you do get symptoms.

[gjmama]

Thanks, Kareng