How much is too much gluten?

[jkittyberry]

I was diagnosed with celiac disease 2 years ago and have been strictly gluten free for a year and a half. Prior to my diagnosis I did not experience any gastrointestinal (or other) symptoms. Last month I decided to have a cheat day (bad, I know) and had no symptoms in the minutes, hours, days, weeks afterward. Basically, I've confirmed I have 'silent' celiac disease.

What I'd like to know is how much gluten will start to damage my intestines. I'm not talking about eating gluten bread again - I'll still stay away from large amounts - but on labels that "may contain" it. I know that it's voluntary for companies to include the "may contain wheat" label on their products so there are discrepancies there anyways, but will the amount of gluten in those products hurt my intestines? Or would it just cause the typical person with celiac to experience symptoms?

[AmandaWiggin]

The way my GI doctor explained too me was that it depends on how advanced your Celiac is.   For example some people can tolerate a small amount of gluten and so it would take longer to have any effects.

but someone whose advanced and cannot tolerate any gluten, not even traces (me for example) I can't go out to eat because even something that says gluten-free it's still cooked in the same surface and becomes gluten laced.

 

someone like that it could affect them really fast... if continued to ignore and eat tons of gluten, it could injure the kidneys, liver, cause neurological issues and could cause cancer.

 

so it really depends on how advanced your celiac is.   For me it's been hard, I was just diagnosed in April and changing 30 years of eating habits is not exactly easy and quite depressing watching family eat out.   My celiac has had me on a severe weight loss pattern (18 lbs in 3 weeks) and a very small appetite.

 

be very careful.  Please feel free to message me and I'd be happy to share recipes and things ???❤️️

[GFinDC]

Hi jkittyberry,

The FDA approved upper limit for foods to be labeled gluten-free in the USA is 20 PPM.  That is a very small amount of gluten.  The limit was set to a level where most celiacs won't experience symptoms/damage.  That doesn't mean there aren't people who will experience symptoms at lower levels though.

Welcome to the forum!

[jkittyberry]

Thanks for the answers guys!

My problem is that I don't experience any symptoms. I know that it is a blessing in some ways, but it makes knowing what/where I can eat difficult. For example, I can't determine if a restaurant prepares gluten free meals properly or not from trial and error and have to base the assumption it's gluten free from the staffs assurances. Which means I don't know if I can eat there again.

I guess my question is if anyone knows if there is a "safe" amount of gluten people with celiac disease can eat before the body starts targeting the intestine. I've tried researching this myself, but most reports state that it varies from person to person and is usually fine until you start to notice your symptoms.

Since I have no symptoms it's difficult for me to determine safe foods/brands and unsafe ones. Up until now I have been extremely strict and will not go near anything that's even potentially contaminated but I am always hearing how some "may contain wheat" food items are suitable for (at least some) people with celiac. I just do not want to harm my body in the process.

[Ennis-TX]

Ouch, unsure if blessed or not, I can react to residue from touching a surface that had gluten then my food. Hyper sensitive, my issues is I sometimes do not know what caused the reactions, and depending on the form and how it was processed determines if  I get the initial lymph response in 30 sec or have to wait til the gut responds in 30mins. Top it off with all my other allergies >.>

[GFinDC]

Hi again,

I usually leave those "may contain wheat " items on the shelf.  I translate that as may not be worth trying.  I suggest you search for celiac support groups in your area and see what restaraunts they recommend.  In my town Texas Roadhouse has been good for steaks, but I don't know about their other locations.

The damage in celiac disease is primarily caused by an immune system attack on the body.  That's the same immune system that protects you from microscopic germs by hunting them down and killing them dead, dead, dead.  When exposed to an antigen the immune system converts waiting non-specific immune cells into active killer cells for that antigen.  Then they go a hunting.  Your body is what they are hunting.  That's all bad for your gut lining (villi destruction) or skin (Dermatitis herpetiformis-DH), brain (gluten ataxia). liver or other organs that get in the way.

So the goal is always 100% avoidance of any dietary gluten.  Part of the immune problem is that your body doesn't give up making immune killer cells right away.  So you may eat some gluten today and have immune system damage going on for weeks to months.  Youch!

Other celiacs may be able to help in your area.  There are also thread on possible products issues on the forum.  You can search for a product name and see what pops up.

[squirmingitch]

I also leave those "may contain wheat" items on the shelf. Really, my advice to you would be to continue as you had been before this "cheat day" and be very strict. I feel this is especially important for the very reason that you don't have reactions so you don't know when you've even been cross contaminated. Please don't take any chances!

I would say for eating out to check Find Me Gluten Free
Open Original Shared Link

for your area. If I were you I would only trust places with multiple, recent reviews by fellow celiacs.

How much is too much? 20 ppm is too much. Do you know how much that is? Unbelievably minute! Just think of grains of sand. 20 grains in a million grains. Or water..... 20 drops of water in a million drops of water.

[RMJ]

I don't have symptoms either, so my doctor follows my antibodies (the whole panel was high when I was diagnosed).  That is not ideal, the scientific literature says antibody tests are great for diagnosis but not so accurate for followup.   At first I just read labels and avoided anything with gluten-containing ingredients.  Antibodies went down but two were still high.  Then I tried only eating if it was labeled gluten free (and on top of that mainly eating whole foods, meat, fruit, veggies, rice).  Antibodies down more but one still high.  I was due for my every ten year routine colonoscopy so my doctor decided to look at both ends.  I still have Marsh 3A damage.  So now if I eat prepared foods I only eat certified gluten free.  I rarely eat out and only go to a restaurant that is completely gluten free or trained by the gluten intolerance group.  I'm hoping my antibodies will finally be normal next year.  I've been at this for four years now.

[captaincrab55]

One needs to ask their own body what immune diseases, cancers, or other health issues it may decide to bless you with.    The  Medical Science Book for this disease isn't complete and there's no way that we can say what is safe for you.      Don't be foolish with so called, "Cheat Days".....

[GFinDC]

Here's a video by Tricia Thompson that may help explain the gluten contamination risk.

Open Original Shared Link

 

[GF-Cheetah Cub]

"What I'd like to know is how much gluten will start to damage my intestines."

I don't think anyone here or even the G.I. doctors can definitively answer your question.   But what you can do is shortly after your cheat day, go take a blood test, and see what your ttg and other celiac related numbers are.   If your ttg number is elevated, then without outward symptoms, your insides suffered.

My daughter is also a 'silent' celiac.   I have gluten test kits at home, and I test her favorite gluten-free restaurant meals regularly.   Anything tested positive, we would stop ordering that meal for her, or stop going to that restaurant entirely.

My daughter used to be very tall for her age.  But now, she is only 25 to 30th percentile of her height.   So we take her celiac disease very seriously.   If you are formally diagnosed with celiac, you should probably not cheat...