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Clearing Up Some Misinformation ( Questions )

Zprime
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Zprime Explorer
Zprime
Posted

Hi Everyone,

So I'd love to clear up some mis-information if I may, I was diagnosed and scared myself half to death on the internet reading about ' Celiac Disease ', However recently I've come to terms with it and I would like some help clearing up some mis-information if possible.

My questions might be kind of ' It's different for everyone ', but I'd still like to ask them.

Myself ( Almost Asymptomatic, Mild IBS upon eating Gluten, Nothing else other than Villi Blunting )

My Questions are -

 

1) Lets Assume the villi all heal, and I accidentally eat gluten. A small amount ( not on purpose ) exactly how much damage gets done, as in If I had a full set of perfectly healthy villi and I'm celiac, Would a small amount of gluten in theory just damage them a bit? 

I was under the impression one bread crumb would wipe away 2 years of progress re-healing villi, this scared me half to death as I was thinking it's impossible not to be glutened at least once in a while, although I try to avoid it like the plague...

 

2) What's the golden rule with foods? I always check the label on things for ' Wheat, Rye, Barley ' and any ' May contain traces of ... ', however I keep reading conflicting reports on things and this makes it difficult to enjoy life.

Example, in my pantry right now I have 3 products, ' Peach Tranqulity Tea ' From Starbucks, ' Heinz Baked Beans ', and a block of ' Kinder Chocolate '.

All 3 of these products mention nothing about wheat, rye, barley, gluten, or anything even remotely close to it, yet I'm terrified to eat it... Why? Because I don't want to eat something that will set back my healing.

Sometimes I can't even find information online about food, as in Theres no mention if Peach Tranqulity tea from starbucks has gluten in it, all it says is ' we cant guarantee it ', the baked beans say theres some in some flavors and none in the flavor I have, and the Kinder chocolate says it should be fine.

So what's the rule of thumb here, do I throw out all 3? do I ingest all 3 and see what happens? or do i simply go ' Ive gotta live my life and the labels say nothing about Gluten so therfore I'm fine '.

This is where I get really tripped up, I'm all for reading labels, and eating ' gluten free ', but it's almost impossible to start investigating every product from when its picked from the farm, to processing, to being canned and sold to you.

 

3) Eating Out - I've eaten out at a few places that claim to be ' gluten free ', yet when I've asked if they have a dedicated Oven they say No ( sometimes yes to the fryer ).

Unless the restaurant has a dedicated over / fryer, is it safe to assume that my gluten free food could be cross contaminated? If that's the case this makes eating out rather difficult as not a lot of places treat it like ' one bread crumb can hurt you '.

Should I just stop eating out? Or just order other items ( Steak, Salad ect ).

 

Thank-you all for reading my questions

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kareng Grand Master
kareng
Posted
5 hours ago, Zprime said:

Hi Everyone,

So I'd love to clear up some mis-information if I may, I was diagnosed and scared myself half to death on the internet reading about ' Celiac Disease ', However recently I've come to terms with it and I would like some help clearing up some mis-information if possible.

My questions might be kind of ' It's different for everyone ', but I'd still like to ask them.

Myself ( Almost Asymptomatic, Mild IBS upon eating Gluten, Nothing else other than Villi Blunting )

My Questions are -

 

1) Lets Assume the villi all heal, and I accidentally eat gluten. A small amount ( not on purpose ) exactly how much damage gets done, as in If I had a full set of perfectly healthy villi and I'm celiac, Would a small amount of gluten in theory just damage them a bit? 

I was under the impression one bread crumb would wipe away 2 years of progress re-healing villi, this scared me half to death as I was thinking it's impossible not to be glutened at least once in a while, although I try to avoid it like the plague...

 

2) What's the golden rule with foods? I always check the label on things for ' Wheat, Rye, Barley ' and any ' May contain traces of ... ', however I keep reading conflicting reports on things and this makes it difficult to enjoy life.

Example, in my pantry right now I have 3 products, ' Peach Tranqulity Tea ' From Starbucks, ' Heinz Baked Beans ', and a block of ' Kinder Chocolate '.

All 3 of these products mention nothing about wheat, rye, barley, gluten, or anything even remotely close to it, yet I'm terrified to eat it... Why? Because I don't want to eat something that will set back my healing.

Sometimes I can't even find information online about food, as in Theres no mention if Peach Tranqulity tea from starbucks has gluten in it, all it says is ' we cant guarantee it ', the baked beans say theres some in some flavors and none in the flavor I have, and the Kinder chocolate says it should be fine.

So what's the rule of thumb here, do I throw out all 3? do I ingest all 3 and see what happens? or do i simply go ' Ive gotta live my life and the labels say nothing about Gluten so therfore I'm fine '.

This is where I get really tripped up, I'm all for reading labels, and eating ' gluten free ', but it's almost impossible to start investigating every product from when its picked from the farm, to processing, to being canned and sold to you.

 

3) Eating Out - I've eaten out at a few places that claim to be ' gluten free ', yet when I've asked if they have a dedicated Oven they say No ( sometimes yes to the fryer ).

Unless the restaurant has a dedicated over / fryer, is it safe to assume that my gluten free food could be cross contaminated? If that's the case this makes eating out rather difficult as not a lot of places treat it like ' one bread crumb can hurt you '.

Should I just stop eating out? Or just order other items ( Steak, Salad ect ).

 

Thank-you all for reading my questions

Some of this I have already tried to explain on your other posts.  

squirmingitch Veteran
squirmingitch
Posted

Don't eat out until you learn how to safely eat out. Ennis covered this in one of your other posts.

I thought that for now, you were eating gluten for some more testing the doc is going to do??????? Have you decided to skip that testing?

Also, here you state there's nothing other than villi blunting. That is incorrect. You did have a positive on blood work as well. 

kareng Grand Master
kareng
Posted
(edited)

It might be easier, if you didn't keep making new topics for things you have already asked.  It would keep all the info together and no one (you or a person answering you)  would have to repeat what they wrote before.  You can reply to people's answers with some more questions if you need clarification

Edited by kareng
kareng Grand Master
kareng
Posted

I would suggest you look at this website - https://www.cureceliacdisease.org/

They have some very good info about how testing is done and other things that might help you understand what is going on.  I have seen from your posts that your doctor didn't explain things very well.  

squirmingitch Veteran
squirmingitch
Posted
10 hours ago, Zprime said:

1) Lets Assume the villi all heal, and I accidentally eat gluten. A small amount ( not on purpose ) exactly how much damage gets done, as in If I had a full set of perfectly healthy villi and I'm celiac, Would a small amount of gluten in theory just damage them a bit? 

I was under the impression one bread crumb would wipe away 2 years of progress re-healing villi, this scared me half to death as I was thinking it's impossible not to be glutened at least once in a while, although I try to avoid it like the plague...

How many times have you asked this now in different threads? No matter how many times you ask it, you are going to get the same answer. No one can tell you exactly because we are ALL individuals & there are 1000's of things that factor into the equation. Not even the world's premiere medical experts on celiac disease can tell you exactly. 

We can say, judging by our own reactions as well as what gets reported here, that the longer you have been gluten free, it generally seems, the milder the reaction is upon cross contact ingestion. Does that correlate with how much villi damage is done? Who knows??? Maybe yes & maybe no. Again, it's an individual thing. I think we would all say that 1 teeny crumb would not wipe away 2 years of healed villi but then there are crumbs & then there are crumbs. Exactly what size of crumb are you talking about? See what I mean?

RMJ Mentor
RMJ
Posted

1. The FDA reviewed all of the scientific literature before issuing their regulations for labeling foods gluten free.  It is a 93 page summary.  The amounts of gluten that did not yield symptoms or effects on villi in people with celiac disease were quite varied from study to study and person to person. There was one study where one dose of 125mg of gluten led to increased lymphocytes (IEL) in the villi - which is the very early beginnings of villi damage.  So that crumb did not wipe out 2 years of being gluten free, but it did start to cause a little damage. In other studies it took a larger amount of gluten to cause damage.  I consider any gluten to be like a booster vaccine - revving up the autoimmune response that I’m trying to keep under control.

2.  The golden rule varies from person to person. I had no symptoms so at first I figured I could just read labels and avoid wheat, rye and barley.  That works for some people but not for me. My antibody levels came down some but were still high.  I then tried only eating processed food labeled gluten free.  Antibody levels lower but still not all normal.  Turns out I needed to only eat processed food that is certified gluten free to get my antibody levels normal. I mainly eat whole, unprocessed foods, some certified gluten free food, and some food labeled gluten free if I’ve evaluated the company thoroughly (for example, seeing if super sensitives on this site can eat it).

3.  Most restaurants that say they have gluten free food are catering to people who are gluten free because it is a fad.  I rarely eat out.  When I do I choose restaurants that are completely gluten free, or that have certified gluten free dishes.  Occasionally I have to go to a restaurant for a family or work gathering. Some restaurants may ask if your being gluten free is a preference or an allergy/medical need - I say it is an allergy. Allergy is not technically correct but it tells them that a crumb will hurt me.  I might eat there.  Otherwise I’ll eat at home first and just enjoy the company.

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notme Experienced
notme
Posted

(hi, rmj, nice to see you!)

just be as careful as you can!  shop the perimeter of your store, and fresh veggies and plain meats are always gluten free.  if you're unsure of ingredients in a product, you can google said suspect ingredient(s) lolz I googled some stuff that turns out was gluten free, but just gross - maraschino cherries are colored with crushed up bug bodies, for example.  yuck, lolz, but still gluten free!  we all mess up, but you can do the best you can.  if it has a processed with wheat, for example, I will usually put it back on the shelf.  your best product bet has that lil circle with a 'gluten-free' in it - I trust those lil symbols.  if you're unsure of 3 products, I would suggest eating them SEPARATELY lolz

eating out - you should get the app 'find me gluten free' and check the reviews that are done by actual people who have eaten there.  I have a few 'regular' restaurants that I trust locally.  when i'm traveling, I rely on the app and it will search from your location via gps on your phone.  some places will say they have a dedicated fryer, but I have found if I start asking questions like:  do you fry your breaded chicken nuggets in the dedicated fryer, most of the time the answer is yes.  why do they think it's dedicated gluten free then, you might wonder?  because sometimes people don't understand what gluten is.  bread and pasta they could understand.  chicken nuggets?  ummmmmm not so much.  if you look up a place where all your buds are meeting and eating and it gets a less than stellar review, just eat at home and go enjoy the company!  my friends are used to me looking at a menu then ordering nothing lolz

also, go to the 'coping' section of the forum and you will find the newbie 101 pinned thread.  please read it and you will get a headstart on all the things to watch out for, tricks and tips.  I always say don't feel sorry for me - lobster and filet mignon are perfectly gluten free ;) and my favorite :D

 

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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