Can someone explain how just a crumb can cause such a huge impact?

[SueMD]

hi there - can someone explain how just a tiny bit of gluten (say a crumb) can wreak so much havoc? I'm not doubting it, I just can't quite get my head around what it does. The relevant information may be way over my (non-medical) head, but I'd like to try to understand.

I've been off gluten (ish) for about a year, and had no idea that tiny bits could be causing such problems. So til a fortnight ago I would grab a piece of my daughter's pasta when serving it, or take a bite of a friend's cake if out and about - that sort of thing. I've not had a celiac diagnosis (am rather struggling with the going back on it for the test, but know I will need to) but have, over the last 2 weeks, been very very strict and it does seem to be helping - horrible acne much reduced, generally feeling slightly less ill, tho the stomach/bowels are still a law unto themselves sadly...

How does such tiny bits affect our bodies (assuming it is celiac), and why don't we practically explode in that case when eating "normal (i.e. huge, for me) amounts?

thanks in advance

Sue

[cyclinglady]

Celiac Disease is NOT an allergy.   It is not over in a manner of a few hours or a day.   It is a autoimmune disorder (like Multiple Sclerosis or Lupus) that has a known trigger -- gluten.  People with MS can have flare-ups (or it can be constant).  My MIL had MS.  Every Spring, like clockwork, she would become paralyzed for six weeks for no known reason and no known cure.  With celiac disease, we luckily know the reason and the cure for a flare-up (gluten).  Once that flare-up starts (and doctors think that 20 parts of million is a good number for most celiacs) it can go on and on and on.  For some, a flare-up after a gluten exposure is just a few days, for others weeks.  For many it is months to a YEAR.   Everyone is different in how long a flare-up can last and what damage it can cause throughout the rest of the body.  That's why there are 300 symptoms connected with celiac disease.   

So, either you get back on gluten daily for 8 to 12 weeks and get the complete blood test or you stay off gluten 100%.  No cheating or you can see it can be a waste of time for a celiac.  You'll never get well.  So, read up on cross contamination.  I personally do not allow gluten into our home.  My kid, who does not have celiac disease, gets gluten at school.  I need a "safe" place to relax!  

Good luck. 

[cristiana]

Hi Sue

I found this a helpful discussion, esp. what kareng says in the second post (dated 17 November 2013.)

This link is in her post which is also helpful.

Open Original Shared Link

 

 

[SueMD]

Thanks both of you 

Cristiana - that's really helpful thank you

cycling lady - yes, i'm aware it's not an allergy (sorry if my post implied i thought it was), i'm just not very clear in my own head yet what it all means so was looking for a bit more info. I am also aware of what autoimmune disease are as I have Hashimotos, and also lost a close family member to MS, so you have my sympathies.

Sue

I should probably add the only reason i was being so blasé about it up until 2 weeks ago was that I had no idea there was any chance of it being celiac (previous doctor read my celiac disease test results as clear, current doc says they are borderline positive).

[mayfly25]

 

Celiac Disease is NOT an allergy.   It is not over in a manner of a few hours or a day.   It is a autoimmune disorder (like Multiple Sclerosis or Lupus) that has a known trigger -- gluten.  People with MS can have flare-ups (or it can be constant).  My MIL had MS.  Every Spring, like clockwork, she would become paralyzed for six weeks for no known reason and no known cure.  With celiac disease, we luckily know the reason and the cure for a flare-up (gluten).  Once that flare-up starts (and doctors think that 20 parts of million is a good number for most celiacs) it can go on and on and on.  For some, a flare-up after a gluten exposure is just a few days, for others weeks.  For many it is months to a YEAR.   Everyone is different in how long a flare-up can last and what damage it can cause throughout the rest of the body.  That's why there are 300 symptoms connected with celiac disease.   

So, either you get back on gluten daily for 8 to 12 weeks and get the complete blood test or you stay off gluten 100%.  No cheating or you can see it can be a waste of time for a celiac.  You'll never get well.  So, read up on cross contamination.  I personally do not allow gluten into our home.  My kid, who does not have celiac disease, gets gluten at school.  I need a "safe" place to relax!  

Good luck. 

I had no idea it wasn't an allergy and I AM a diagnosed celiac!  You learn something every day.  I didn't know it was an auto-immune disorder either.  I guess I'll add that to my already growing list of auto-immune disorders (Addison's and Hashimoto's).  Ugh!  Since it's NOT an allergy and is actually an auto-immune disorder, can it be hereditary?  My 4 year old son shows some signs of having a gluten intolerance, but I haven't had him tested because he's 4 and I hated my testing (seriously, the prep for the colonoscopy, the throat thing, the blood work - it was all so much).  

Side note to original poster - I had to get all new jars for my kids because I am THAT sensitive.  The only gluten we have in our house is my children's bread for their sack lunches.  I had to get new peanut butter jars, honey jars, jelly jars and mark them all with a big ol' "MOM".  The tiny crumbs would make me sick for about a week or two.  It's miserable.  If you don't want to get tested and think you still have a problem, I would avoid gluten 100%.  That also meant I had to buy all new wooden spoons, spatulas, colanders, etc.  It's a pain!

[cyclinglady]

Sometimes, I write to help not just the OP (you) but others reading!   

 I have Hashi's too.  When it acts up, there's no controlling it.  Before my CD diagnosis,  I had two years of crazy roller-coaster hormones due to going through the menopause window and undiagnosed celiac disease.  I was hyper and hypo which drove my doctor crazy.  Funny thing is that after hitting menopause and recovering from celiac disease, my thyroid has remained stable.  But who knows what will trigger it in the future!  Let's hope never!  

[cyclinglady]

 

I had no idea it wasn't an allergy and I AM a diagnosed celiac!  You learn something every day.  I didn't know it was an auto-immune disorder either.  I guess I'll add that to my already growing list of auto-immune disorders (Addison's and Hashimoto's).  Ugh!  Since it's NOT an allergy and is actually an auto-immune disorder, can it be hereditary?  My 4 year old son shows some signs of having a gluten intolerance, but I haven't had him tested because he's 4 and I hated my testing (seriously, the prep for the colonoscopy, the throat thing, the blood work - it was all so much).  

Side note to original poster - I had to get all new jars for my kids because I am THAT sensitive.  The only gluten we have in our house is my children's bread for their sack lunches.  I had to get new peanut butter jars, honey jars, jelly jars and mark them all with a big ol' "MOM".  The tiny crumbs would make me sick for about a week or two.  It's miserable.  If you don't want to get tested and think you still have a problem, I would avoid gluten 100%.  That also meant I had to buy all new wooden spoons, spatulas, colanders, etc.  It's a pain!

It is the ONLY autoimmune disorder that is for sure is genetic!!!!!  What they do not know is that if you have the genes, what are the causes to "turn it on".  Celiac researchers recommend that all first-degree relatives get tested even if symptom free.  Yes, you can be symptom free and have celiac disease!  So, keep giving your kids gluten daily for 8 to 12 weeks and get them tested (every few years for life, unfortunately).  Our insurance did not blink an eye!  It's just a blood draw.  Worry about the endoscopy later.....

 

[cyclinglady]

 

Hi Sue

I found this a helpful discussion, esp. what kareng says in the second post (dated 17 November 2013.)

This link is in her post which is also helpful.

Open Original Shared Link

 

 

Karen knows her stuff.  She even attends celiac conferences (wish I could...someday).  Plus, she has mastered the art of getting her kids to consume veggies!  That is no small feat! 

[SueMD]

interesting about the Hashis calming down cycling lady - mine's been temperamental and acting weird (also menopausal) - could be another benefit to sorting out the celiac disease (if it is)  

mayfly - i've really not got a handle on how cautious i need to be yet  (haven't yet got separate toaster etc), but am tempted to go the same route as cycling lady - i do all the cooking after all, they might not even notice  sounds like good advice re just the blood tests for starters for your kids  X

[cyclinglady]

 

Hi Sue

I found this a helpful discussion, esp. what kareng says in the second post (dated 17 November 2013.)

This link is in her post which is also helpful.

Open Original Shared Link

 

 

Karen knows her stuff.  She even attends celiac conferences (wish I could...someday).  Plus, she has mastered the art of getting her kids to consume veggies!  That is no small feat! 

[kareng]

 

Hi Sue

I found this a helpful discussion, esp. what kareng says in the second post (dated 17 November 2013.)

This link is in her post which is also helpful.

Open Original Shared Link

 

 

 

 

Karen knows her stuff.  She even attends celiac conferences (wish I could...someday).  Plus, she has mastered the art of getting her kids to consume veggies!  That is no small feat! 

Wow!  I was f&$$ing brilliant back in 2013!  Lol  :0

and, my kids are no longer teens, but do eat some veggies.  Oldest, 23, just decided he liked asparagus after all these years of hating it.  Amazing what a serious girlfriend can do for a guy's diet!  

[SueMD]

I've finally had time to read that link properly - very clear and does make much more sense. Tho i understand my body attacking my thyroid, I don't think I quite "got" how gluten starts the same process off in celiac disease. thanks all

Another question for you experienced folks out there (cycling lady? Kareng? cristiana?  ) Bear with me...

I've finally got a doc's appt with the best GP in our local practice (she's very keen to listen to her patients - pretty unusual stuff).  I've had 2 previous celiac disease tests (which I'm 99% sure are for some form of AGA test - if i'm understanding the FAQs on this site correctly - as I think that's the default test on the NHS here in the UK). The first was over a year ago when I was certainly consuming gluten, tho probably not a huge amount, and it came out borderline at around 8 (tho i'm aware if you don't know the terms of ref this doesn't mean much). The second was 6 months ago when I was very very low gluten (until i understood recently about how sensitive, I would have said pretty much gluten free), that one came out as definitely negative for CD with a 5. 

My question is this - if the 2 results differ by a relatively large amount (ie I'm producing noticeably more antibodies when consuming gluten) is that in itself a sign of having celiac disease - or does it not work that way? 

I'm trying to arm myself with as much convincing info as possible to get her to agree to test/biopsy - so I know for sure one way or another. I'll go private and pay for it it necessary but would (obviously!) rather not.

Thanks in advance you are a wonderful source of knowledge  Sue X

[kareng]

 

I've finally had time to read that link properly - very clear and does make much more sense. Tho i understand my body attacking my thyroid, I don't think I quite "got" how gluten starts the same process off in celiac disease. thanks all

Another question for you experienced folks out there (cycling lady? Kareng? cristiana?  ) Bear with me...

I've finally got a doc's appt with the best GP in our local practice (she's very keen to listen to her patients - pretty unusual stuff).  I've had 2 previous celiac disease tests (which I'm 99% sure are for some form of AGA test - if i'm understanding the FAQs on this site correctly - as I think that's the default test on the NHS here in the UK). The first was over a year ago when I was certainly consuming gluten, tho probably not a huge amount, and it came out borderline at around 8 (tho i'm aware if you don't know the terms of ref this doesn't mean much). The second was 6 months ago when I was very very low gluten (until i understood recently about how sensitive, I would have said pretty much gluten free), that one came out as definitely negative for CD with a 5. 

My question is this - if the 2 results differ by a relatively large amount (ie I'm producing noticeably more antibodies when consuming gluten) is that in itself a sign of having celiac disease - or does it not work that way? 

I'm trying to arm myself with as much convincing info as possible to get her to agree to test/biopsy - so I know for sure one way or another. I'll go private and pay for it it necessary but would (obviously!) rather not.

Thanks in advance you are a wonderful source of knowledge  Sue X

The difference on those tests doesn't sound especially significant.  A slight positive might be normal with your other autoimmune diseases.

[kareng]

"A screening test is commonly used when an individual is in a risk group for celiac disease, whether or not he or she has symptoms. The tTGIgA test is usually the one offered for celiac screening events, as it is the most sensitive test available. In fact, it is generally believed that about 98% of people with celiac disease have a positive tTG test. While the tTG test is very specific, it also can produce false positive results on occasion. Indeed, some people with Type 1 diabetes, Hashimoto’s thyroiditis, and autoimmune liver conditions are especially likely to have elevated tTG without having celiac disease."

Open Original Shared Link

[SueMD]

hi Karen - that's really interesting - thank you. 

[SueMD]

Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting.

thanks for all the help

Sue