Contamination Anxiety- Help!

[afitgirl]

I'm new and still very bitter.   I am trying to understand as much as I can.  I have read conflicting information about cross contamination.  I'm pretty sure I can make gluten free choices for food.   I'm not overly worried about that (although I am sad).  But I don't understand the cross-contamination thing at all.   People take such different approaches.    Do I need to worry about the Tim Horton frozen beverage machine that makes 99% gluten free drinks on it?   Do I worry that a roll brushed agaisnt my baked potato?  Can I just pick croutons out of salads? Do I really have to worry about using a separate toaster?  Can I trust that a restaurant prepared my gluten free choice correctly?

Will cross contamination killl me? Can I eat gluten free to my best ability without worrying about 1 tiny missed molecule?  

Will taking 99.5% of all gluten out of my diet not start to heal me?   So if I do get a tiny bit here or there it won't do real damage?

I don't have real GI symptoms (that I know of) I found out about celiac through a random blood test because my anemia (blamed on heavy periods) was so severe I needed a transfusion.    How will I know I'm safe?

I'm so frightened about this. 

[LauraTX]

Unfortunately, the answer you are going to get is just not going to line up with your hopes.  For a celiac, no matter how severe or mild symptoms were at diagnosis, it is all or nothing with the treatment - a completely gluten-free diet.  

 

Check out Kareng's very good reply to the person who posted this thread:  https://www.celiac.com/forums/topic/94443-how-bad-is-cheating-on-the-gluten-free-diet-periodically/

 

To answer some of your specific questions, when you think about CC, a good way to think of it is how well you can clean something.  If you dropped an item into a toilet, is it a porous surface and needs to be thrown out, or is it something like stainless steel or glass that you can sanitize?  So toss your old colander, keep your smooth glass bowls and dishes.  Lettuce, potatoes, and pretty much all prepared food will be in the -Cant clean so throw it out- category, so if croutons, a roll, a gluten sauce, a tiny crumb, or speck of flour has touched it, it is contaminated with gluten and that cannot be undone.  I am not familiar with the Tim Hortons beverage offerings, but if they thoroughly clean their machine you are probably okay if your drink is 100% gluten-free, but not if your drink is 1% gluten.  But shared equipment always has an inherent risk, as does eating at a restaurant.  Having a diet of 0.05% gluten is not gluten-free enough for a Celiac, can do real damage, and won't allow proper healing.

 

Eating at restaurants is always going to be a crapshoot.  A lot of people limit eating at restaurants because they are the places the person most commonly gets accidentaly glutened.  You do need a separate gluten-free toaster, and don't need to be eating anything that definitely came in contact with gluten.  Can you eat gluten-free to the best of your ability without worrying about 1 tiny missed molecule?  Yes.  But eating gluten-free to the best of your ability does not include picking gluten things off your food and eating it.  Overall, allowing cross contamination will result in your celiac disease being improperly treated.  

 

I am in the same boat as you as far as not having overt GI symptoms when gluten is accidentaly consumed.  There is another person who started a thread today about that subject, you can check out what I said to her there about that making us have to be extra vigilant about what goes in our mouths, it also applies to you:  https://www.celiac.com/forums/topic/107773-newly-dx-how-do-i-tell-if-ive-been-glutened/

 

Here are a few other reads that I think would be helpful to you:

Open Original Shared Link   "Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms."

 

Open Original Shared Link    Avoiding gluten cross-contamination

 

Open Original Shared Link   What can happen if you have persistent damage caused by not being completely gluten-free

[ravenwoodglass]

It is hard to understand why we have to be so strict and you are not alone in struggling. It is hard when you don't have GI reactions but eventually you may notice symptoms that you thought were unrelated that resolve and then show up to give you a clue when you have gotten glutened. 

Celiac is autoimmune and can impact may parts of our bodies. Some will see depression or anxiety resolve or skin problems or joint issues or fatigue....well the list goes on as different folks are impacted differently. When glutened those other issues can come back for a short time. That can be a clue for some. 

It is overwhelming at first and it is a struggle. The folks here will do all they can to help you through it in any way we can. 

[NatureChick]

I would probably have had a much more difficult time staying gluten-free if I couldn't look back on twenty years of health problems and know that I never want to experience that again. 

It sounds as if you may have dodged at least part of a bullet in that it was caught before you had outward signs. The other way to think about it is that the autoimmune reaction doesn't limit the damage to just your small intestine, but also goes after the thyroid, the pancreas, the liver, the brain, etc., all of which could have been happening silently.

I don't think I was angry early on so much as disappointed. But you'll find ways to get through the emotional reaction, incorporating ways to make eating more interesting or easier, or to socialize in ways that are more convenient for you, until gluten-free just becomes normal for you. 

Most foods are naturally gluten free so you really don't have to give up much - except the convenience of having someone else make it for you. Find a grocery store that carries gluten-free items in abundance or order them online. But cooking for yourself is also a great way to eat a more-healthy diet. And you'll probably discover that you can find some gluten-free options in places where you wouldn't expect them so even if you are caught unprepared, you don't have to starve. For instance, my local gas station convenience store carries a brand of gluten-free protein bar. But you'll also get good at stocking up on a few of your favorite items so that you always have something. Of course, there are some really awful tasting gluten-free processed foods out there, so keep looking until you find the good ones. They do exist.

Yes, take cross contamination seriously. Everyone's reactions are different so you might actually discover that you are reacting, just in an unexpected way. My indicator symptom for minor contamination now is a really bad ear ache, but early on, I used to get really irritable followed by a migraine then lethargy, and quite a bit of sinus pain, just from the minute amounts that you could get from a toaster or a pan with a porous coating. 

Reactions don't follow a rule book so if you start paying close attention, you may discover that you actually do have some symptoms that you can get good at recognizing ... and are actually quite helpful to figure out foods you need to avoid).

[nvsmom]

 Do I need to worry about the Tim Horton frozen beverage machine that makes 99% gluten free drinks on it?  

Yes.If it is not being cleaned well between each drink you should probably skip it if it could be contaminated.  When I get a latte at starbucks, I get them to use a fresh container for me so I can avoid issues like that. It's a hassle, but I'm not sick this way.

 

Do I worry that a roll brushed agaisnt my baked potato? 

Yes. Crumbs and dustings of flour can hurt you. You my not get symptoms from ingesting a small amount of gluten, but your body is being damaged.

 

Can I just pick croutons out of salads?

No. Just like with the crumbs, gluten can't touch your food.  You will have to be very "anal" about it.  

 

Do I really have to worry about using a separate toaster? 

Yes. Or wrap your toast in tin foil but that's a hazard in an of itself. LOL

 

Can I trust that a restaurant prepared my gluten free choice correctly?
Yes and no. It depends on the restaurant and what you've ordered. Some foods and places are safer than others.

Will cross contamination killl me? Can I eat gluten free to my best ability without worrying about 1 tiny missed molecule?  

It will hurt you... Think of it like an extreme peanut allergy - you have to be that careful.

 

Will taking 99.5% of all gluten out of my diet not start to heal me?   So if I do get a tiny bit here or there it won't do real damage?

It will do real damage over time. If you keep eating it you will never fully heal... Healing does not start the moment you stop ating gluten.  It takes days, weeks, months or even years for your body to stop producing autoantibodies and finally calm itself down.  For instance, I was still producing auto-antibodies after a year gluten-free, granted that is longer than most but if I had been having small amounts of gluten here and there it might never have come down to normal.  Most people take a few months to get to normal again... Months.

 

Hang in there. The first few months are hard, and for may the first few weeks can be awful (moody, fatigued, headaches, pain) if they go through withdrawal. It is tough to relearn eating habits after a lifetime of doing it one way, but it will get easier... probably by the fall this will seem much simpler than it is now. 

 

Most people notice improved health after a few months, and that makes it even easier to stay gluten-free. Hang in there.

 

BTW, how are your platelet counts? I had a situation very similar to yours (heavy menses) but mine was from a low platelet count.

 

Best wishes.

[afitgirl]

You're right, that is not what I want to hear.  I just don't understand it to be true.    I feel like it has to be impossible for people to be 100% all the time.    There has to be errors in there just  living life.  And then I don't understand how they are alive.   Honestly, I don't.  I would think I will need to be in a bubble forever.   People that eat out, share kitchens or take lots of medications have to be exposed.   Are they  not healing?

Next question please.  If I get that tiny amouht of exposure...say from a medication that I didn't realize about does that set me back to the beginning?  I guess I'm wondering if the tiny exposure is easily fixed?  Or back to square one each time you have an contamination?

 

How will I even know if I'm healing?  I'd think I'd need to get an endoscopy every 3 months for the rest of my life. 

And why do I read that gluten-free really doesn't heal that many guts out there?  Maybe symptoms are better but I'm reading surveys that show little improvement on the actual intenstines. 

I'm freaking out and this feels IMPOSSIBLE.    Everyone here makes it seem like in time it will become easy, BUT I can't see that possible without being in a bubble or getting a little gluten time to time.


NVSMOM- My platelets are small and few.  However, that is changing with the iron supplement I'm on. 

[dilettantesteph]

The problem is that the answer isn't the same for all celiacs.  Some of us have to be very careful about contamination to avoid symptoms, and some of us don't.  The ones that are unsymptomatic have a hard time figuring out what to do.  Here is a long study about the topic: Open Original Shared Link

[sweetsailing]

afitgirl - we all make mistakes.  I guarantee that every celiac you talk to has been accidentially glutened at some point.  Although the diet is all or nothing, since you are new, focus on one day at a time.  If you make a mistake, just start again.  Dont get hung up on one mistake ruining everything, just start again.   It took me awhile to get there, mentally.  It can be overwhelming at first, don't strive for perfection, strive for better.  How can I make my diet better today.  I kept a food journal at first to track what I was eating, it helped me examine where gluten might be or not be at first.  Now it's fun to look back and remember how far I came.  If you track how you feel each day too, you may discover symptoms you didn't know you had. 

 

To your point about 100% all the time.  It's not as if we all ate gluten one day and the next day we all ate a perfect gluten free diet with zero cross contamination.  It's a learning process, strive for better.  I am 7 months gluten free and just in the last week or so, was feeling awful from eating out one too many times in a resturant.  As much as I try to be 100% gluten free, as others have said, eating in resturants can be a crapshoot.  Will I stop eating in resturants?  No, not likely, although I will limit my eating out, be very careful what I order and return to the resturants that I felt good about afterwards and not return to those that I got a reaction from.  I realize that you said you don't have many symptoms, however you can tell by your interaction and understanding from the wait staff how likely your meal is gluten free.  Take your cues from how well you think they understood your dietary needs. 

[afitgirl]

I guess having three young kids I feel like If I make a mistake I could just die.

I also wonder how people have blind faith that it's "working?" How do I know without real symptoms that I wouldn't just keel over.

It's hard. I have soooo much energy. I love love life! I teach 25 fitness classes a month. I swear I feel soooo healthy aside from stupid anemia. I'm so blind sighted by this.

[BlessedMommy]

Take a deep breath! You are just starting out. Everything is going to be okay. Take it one day at a time. You will learn how to manage things, it just takes time and practice. And this forum is a great support for that!

[nvsmom]

You'll get there. We all made mistakes at first. Everybody does.  Some of us have cried at the grocery store, others avoided eating out, other had such poor health at diagnosis that they rejoiced when they had an answer. There's no right or wrong way to adjust to this diet.

 

If you are worried that you are still getting gluten, the DGP tests are the best tests to use when checking diet compliance. I can't remember which tests were positive for you, but if it was DGP tests, then you'll have something to compare back to.  Restesting sometime in the first 6 months and then at 1 year can be helpful.

 

Some doctors (like mine) like to use the tTG tests to check how gluten-free you are but those results can stay positive much longer, and can be raised by other health problems, so they are not as good to use.

 

This is off topic but, have you had your kids tested?  If they are still consuming gluten they should be tested every 2-3 years, or sooner if they show celiac disease symptoms.

 

(hugs) Hang in there.

[afitgirl]

Is this not a death sentence?  Isn't or complications of it slowly killing me?    I am so confused how I'm allowed to take it slow and learn as I go and that be okay?   Don't I have to stop now and get serious or else???

I'm appreciate your help.  I really really really do.   I'm just so blind slighted with it all.

I will get my kids tested.  They are 8, 6 and 3.  Im just waiting to get a grip on it myself.  My mom, who'd I'd swear 100% has it  based off of traditional symptoms was  negative this week.  

[Wi11ow]

Not a death sentence!

 

Open Original Shared Link

Following a gluten-free diet will usually greatly improve and may even completely resolve symptoms, heal existing intestinal damage, and prevent further problems. Improvements can begin within days of starting the diet. Healing completely involves a restoration of the intestinal villi that can absorb nutrients from food into the bloodstream as well as keep the gut from leaking. This usually takes place faster in children than in adults – kids having resolution in as little as 3 to 6 months while older adults may need as much as 2 years.

 

 

 

You do need to stop eating gluten unless you are doing more testing. Just think about how much control you do have. It might take a while, but you know things like fresh veggies and fruits are safe. Plain meat like chicken, beef, fish are safe. Maybe it would help to sit down and just plan out 2 or 3 day's meals? Maybe that would take some pressure off for a moment?

 

I can't speak for anyone, but I think the take it slow might have meant, eat what you know is ok, and give yourself time to learn. It's ok to be scared. I sat in front of the computer for days and days, crying and reading everything I could find. How could I possibly do this by myself with no help from anyone. I already knew more than my doctor! But there is good information here, and websites like the University of Chicago. There are tons of recipies - simple stuff if you don't cook. Make a big pot of vegatable soup, then you have a few meals. When I make chicken, I'll cook the whole bag, and freeze part so I don't have to do so much work next time. Or cook a whole bag of gluten-free rice. You get the idea. Maybe keep a food journal.

 

Keep asking questions. Reread the coping section. Seriously. One minute I would say to myself, I can do this, it's only food - it's  not cancer. No surgery, no mroe drugs. Then the next I was just a wreck and crying again.

 

Think about what would help you. Is it knowing what to cook for the next meal? Is it a grocery list? Do you have a few questions you're afraid to ask? Name the 2 or 3 things that worry you the most and then make the list, or ask the question, etc. Food can be emotional. Give yourself time to adjust. You can find new comfort foods. There are substitutes for a lot of gluteny foods out there. And not all of them are expensive specialty items.

 

So sorry you are having such a hard time. What ended up helping me was to put a bunch of carrots, celery and peapods in a bag with some hummus, a bottle of water, and I drove down to one of my favorite spots and had my own picnic by a water fall. Was the first time I felt normal in 3 weeks.

 

I just got my official diagnosis today. But I went gluten-free almost 3 weeks ago. I feel better. I'm doing better. I know you are healthy already. I'm glad you found this out before it could steal that away from you!

 

If you want to talk - you can PM me.

[CathyO]

What would be a death sentence is knowing you have this disease and doing nothing about it.  The damage is cumulative.  The effects build slowly. Over time your body becomes sicker and sicker.

 

What's the only cure?  Removing all gluten from your diet.  The "standard" is 20 parts per MILLION in a food.  And some people cannot even tolerate 20PPM.

 

I was diagnosed this year.  I am 60. I have had digestive and stomach issues since I was 12 years old.  Gall bladder disease.  Ulcers. Colitis. Chronic diarrhea. Chronic depression. Diagnosed with fibromyalgia in the 1980s. Migraines.  Building and building issues, until my digestive system basically revolted and gave up.  Not digesting food.  Seizure activity after ingesting gluten.  Heart attack symptoms, cardiac care unit ... until all cardiac tests were negative for a heart attack. But I was on my way to a heart attack if I didn't change my life. Severe dehydration from chronic vomiting and diarrhea can affect my heart.

 

The ONLY thing that has made a difference is removing gluten from my diet.

Perhaps I'm almost glad that I have physical symptoms to go along with what gluten is doing to my body.  A silent disease would be more frightening.  I know without a doubt when I ingest any gluten -- down to inhaling wheat flour dust.  When cleaning out my pantry to remove all gluten containing products, I spilled wheat flour, and the dust made me ill.  I've been "glutened" by drinking out of my husband's straw when he had just consumed gluten.

 

Living a gluten free life is not the death sentence.  It is the key to living, and maintaining your health for a long time.  You are much younger than me, and how I wish I had been diagnosed 30 years ago.  How different my health might be today without the cumulative effective of gluten consumption.

 

Think "long term" and "future" rather than here and now.  If you eat properly today, in 20 years you'll remain fit and healthy and have the ability to be active.  You won't be 60 and crippled with physical ailments that leave you depleted of energy, in pain, and exhausted.  While you might feel energetic and full of life now, if you leave any disease -- any disease -- untreated for years and years, the cumulative effects will show up and bring you down physically at some point.  You just won't know when or how or where.

 

My first collapse was a year ago, at a friend's house, on their bathroom floor.  Thankfully a nurse happened to be at the dinner party, and ambulance was called, and I got to the hospital.  I was dehydrated, delirious, and very sick.  It took almost year of ruling things out. 

 

Perhaps you can find a celiac support group in your area.  Our local hospital here in my tiny community even has one.  Check at your local health food store and see if they have some announcements posted ...  there are many others out there just like us, and we can all learn from each other how to do this successfully.
 

[BlessedMommy]

CathyO, I really appreciated your post. I'm 32 and have been gluten free since shortly before I turned 28. Sometimes the years ahead of being careful with my diet seem overwhelming.

 

It's good to see a little perspective and to realize that I'm fortunate to have caught this early.

[JosieToo]

Honestly, in three months eating gluten free will be a breeze. Also, attitude plays a HUGE role in how you deal with celiac disease. For me, it’s really not a big deal. I focus on what I can have, not what I can’t. Others in my circle who suffer from celiac disease are miserable and constantly wasting energy feeling sorry for themselves and lamenting the foods they can no longer eat. It’s counterproductive. Give yourself a bit of time to mourn, then move on.

 

Like you, I did not experience traditional symptoms of celiac disease.

 

My doctor told me the following about cross contamination “a crumb is as dangerous for you as eating a loaf of bread”.

 

I also asked my dietician about the damage from cross contamination and how quickly you will recover. She said that if you go 6 months between “glutenings”, the damage can be slowed relatively quickly. However, she also said that being strict about gluten is the best way to reduce your risk of developing other autoimmune disorders.

 

Your best defence against cross contamination is 1) a 100% gluten free household and 2) limiting eating out.

 

Shared households can be done, but you must be “on” 100% of the time. When I was diagnosed my husband decided (without me asking) to go gluten free. He said “it’s just not worth risking your health so I can eat a bagel”. Be sure to do research on what kitchen items need to be replaced. Generally anything porous/scratched should go (think Teflon, Tupperware, etc.). Don’t forget your BBQ grill!

 

Oh, and your kids will adjust to eating gluten-free at home. Honestly, if you really want – there is a replacement for every gluten containing product (except croissants – just haven’t found a good one yet!).

 

Eating out is a pain – no doubt. There are some great restaurants (mostly chains) that have procedures and policies in place. I always make sure at the beginning of the meal to tell them that I’m celiac – not just trendy – and that all precautions need to be taken (i.e. change gloves, prepared separately, etc.).

 

All that having been said, we continue to live our lives fairly normally. We travel a lot, enjoy eating out with friends and going to other’s homes (we always bring my meal or bring a gluten-free dish so I have something to eat). My parents and in-laws both have a box of cookware / cutting boards, etc. set aside for me at their homes, so I can eat there without concern). 

 

You can be healthy and live a great life - and eating this way really does become easy. 

[CathyO]

CathyO, I really appreciated your post. I'm 32 and have been gluten free since shortly before I turned 28. Sometimes the years ahead of being careful with my diet seem overwhelming.

 

It's good to see a little perspective and to realize that I'm fortunate to have caught this early.

 

BlessedMommy,  I'm glad to know something I said was helpful. 

I try to look at it that I'm not doing this "forever", I'm just doing it for today.  And we can do anything, just for today, right?

[june27]

I was diagnosed 2+ years ago, with no complaints of digestive issues - I started seeing a naturopathic doctor for my seasonal allergies and dry eyes.  After a food sensitivity test, which I scored off the charts for gluten and wheat, a celiac blood panel was done and came back positive for celiac.

 

My first reaction was that I was glad to have an answer and that I was going to embrace this new diet and try lots of new foods.  After a few weeks on the diet and lots of reading, I found myself in a similar place to where it sounds like you are now.  I kept reading more, to try to gain more knowledge.  Some of it was helpful, and some just added to my being overwhelmed.

 

At some point, I decided to make a mental list of what I was going to do/avoid, and continue down my path.  For me it was to do all of the obvioius things - cleaned out the cupboard of gluten or contaminated items, new cutting boards, wooden spoons, plastic spoons.  I changed over my health/beauty products because I wasn't sure if I would know if I was reacting or not.  I also was very careful about reading ingredients - I still do not eat anything made on shared equipment (I can't say that I know this is an issue for me, but I have had no reason to test it out).  I started eating out with anything off a gluten-free menu - but that philosophy has changed over time.  

 

After 2 or 3 months, I hadn't had any issues, and was starting to wonder if I was really doing as well as I thought, or if maybe I was a silent celiac.  I went out to eat, and contemplated tasting one piece of pasta from my boyfriends plate (ok, i didn't really contemplate it, because i know it would be a bad idea, but the thought did briefly cross my mind).  that night i got home, and i felt terrible - tummy cramps, C then D, bloating/belching.  this went on for 4 days, and it was another 4 days before my digestive tract really got back to normal.  now i know what my symptoms are when I get glutened (less severe with less gluten, but the general symptoms are the same).  I had ordered off the gluten-free menu, but did not say it was an allergy - I have never gone back to that restaurant.

 

things that i have learned since then:

-cooking food in the pizza oven that has flour in the air does make my tummy unhappy (who knew they cooked the chicken wings in the same oven?? - i would not have ordered them i knew where they were cooked)

-my sister uses a new package of sugar for me (the canister is contaminated with flour from using the same measuring spoon - made me sick for a day before we figured out the source)

-restaurants take your gluten issues more seriously if you tell them it is an allergy (i know that it is not, but it is a word they understand and makes them take it seriously)

- one small (accidental) sip of gluten-beer will make me sick for a day

 

Each of these mistakes makes me realize how sensitive I am, and also helps me to communicate to others how serious it really is.  

 

It really does get better with time.  Don't expect that you will be 100% perfect from the start - do the best you can and learn from your mistakes.  

 

Good luck!

[NatureChick]

Though celiac might not kill you quickly, it will definitely destroy the quality of life. 

It has to be tough to just read stories of faceless strangers to be come convinced that the long-term effects are drastic. But perhaps you can look at the generations before you in your own family to find motivation because celiac is often a genetic trait.

Though none of my elder relatives have official diagnoses or pay any attention to what they eat, many of them have suffered from debilitating health problems or even died from diseases that could be attributed to celiac. These include pancreatic cancer and colon cancer (both fatal), diabetes, depression, osteoporosis (one aunt has a spine that is more metal than bone due to her bones disintegrating), infertility, sleep apnea, hearing loss, anxiety, stunted growth, GERD, weight loss, obesity, hair loss. And those are just their health problems that I know about. 

I really don't want to end up in a wheelchair when I'm 60 because my bones can't support my weight, or to alienate my family members with anxiety- or depression-driven mood swings.

I'm not saying that it is a good idea to do arm-chair diagnoses of your relatives, but if you are looking for motivation, their woes could become your cautionary tales.

[beth01]

I felt the same way you did when I was diagnosed two months ago. At first I was relieved that I had a diagnosis and finally knew I wasn't going insane.  It seemed that every doctor thought I was a hypochondriac.

Then came the waves of depression. It's so hard to clean out all your food, get rid of some of your appliances, tell family and friends, getting children tested ( one of my children is positive, the other isn't).  It's rough.  But two months gluten free ( a few mishaps) and my depression has lightened. I can't say it has gone away, but it's a lot better. And everyday  that goes by when my health improves, so does my spirits.

It is hard but it gets better.  Some even say it becomes second nature.  What helps the most is having a very good support group, family and friends that understand.  You will definitely get that here.

Good Luck!

[IrishHeart]

Every day is a healing day. Period. That's all any of you need to know, Don't look back &  do not assume anything about the future either.

 

Do not let fear rule your lives.

This diagnosis is not a death sentence or "the worst thing that can happen".  For many of us who went undiagnosed for most of our lives, it was life -saving. This disease almost killed me, but I am alive and kicking.

 

I have no fear about eating out on occasion or at people's houses either....because I choose wisely and take precautions.

 

Occasional hits of CC will not automatically kill you. Continued exposure is not a good idea, no, but get past the anxiety and fear of the very real possibility that you will be hit sometimes with cross contamination. It happens to the best of us--even those who are super vigilant.

 

We live on a shared planet! .... and CC is inevitable. You can't live in a bubble and you can't give in to the fear. That is no way to live.

 

You may feel like crap if you get hit, but you won't keel over and  die either. Trust me on this one. 

 

Read this book:

 

Real Life With Celiac Disease by Melinda Dennis and Daniel Leffler.

 

Read reliable sources of information and just do the best you can every day.

 

Open Original Shared Link

 

 

You will heal your gut and start to feel good and the anxiety and fear will lift.

 

I promise. 

[Redbard52]

AFitGirl:

 

I know some will disagree with me, but I am not quite as "anal" about possibly ingesting small amounts of gluten.  I do agree that you should be anal about avoiding foods that are likely to contain more than 20 ppm gluten content.  I was diagnosed with Celiac's 2 years ago. I do react to significant amounts of gluten, but I am not as severely sensitive as some.  For those that are severely sensitive, they do need to be very anal to avoid symptoms.

 

I have read that one research test program showed that 10 mg of gluten did not damage intestines of adults with celiacs in the program and that 50 mg of gluten did damage intestines.  So "a few molecules of gluten" may not be harmful, but you do need to minimize your gluten intake.

 

I am not as concerned about cross-contamination as some.  I try to take reasonable precautions, but I don't get paranoid about eating in restaurants or buying prepared foods that don't "guarantee" a gluten-free facility.  I do check all labels for ingredients and will not typically buy items that list products known to contain gluten. But I do consume Kikkoman soy sauce and Corona beer occasionally - both were shown in previous tests to contain less than 20 ppm million gluten, even though wheat or barley is used to produce them.  (I have read that the processing they use destroys much of the gluten.) 

 

For every meal I order at a restaurant, I do ask if the meal contains any gluten or wheat flour.  I previously had made the mistake of not asking when I thought a meal I often eat would be gluten free - but I then found that some restaurants do use gluten in the meal.  (In the past year I had two severe glutenings when I forgot to ask.)  So now I always ask.

 

So, yes you do need to always be "vigilant".  But you may not need to be "anal".

 

Redbeard52

 

 

[CathyO]

Every human body is different.  We're not gizmos made on an assembly line in a factory. No two are alike.

 

I have to be very careful about the smallest amount of cross contamination, because I have violent reactions.
Down to breathing flour dust. 

You may not have my issues, because your body is different than mine.  You are not me, and I am not you.

We all have to learn to live in our own bodies and learn what our bodies can handle and how they will react.
My experience will be different than yours, and my reaction will be different than yours or anyone else's.
 

I am unable to eat any products made in a facility that also processes wheat.  I kept getting sick and could figure it out for a few weeks. Until I read the label on a "gluten free" item I ate that was also processed in a facility the processes wheat.  Once I took that item out of my diet, I got better.

It takes a while to figure it all out, so patience is the key.


 

[ravenwoodglass]

 

 

I have read that one research test program showed that 10 mg of gluten did not damage intestines of adults with celiacs in the program and that 50 mg of gluten did damage intestines.  So "a few molecules of gluten" may not be harmful, but you do need to minimize your gluten intake.

 

 

 

It is true that we can have a very wide variety of sensitivities to small amounts of gluten and do have to do what we need to do for us to respect our own sensitivity level.

 

My issue is with studies like the one you wrote of above. It seems so many studies only concentrate on the damage that may be done to our intestines. Researchers seem to totally ignore that Celiac (not celiac's) is an autoimmune disease not just a gut disease. We can have many more impacts that involve body systems that are pretty much totally ignored, like the brain. Just because the villi don't get damaged IMHO does not mean that the antibodies are not attacking another system. Many of us have to be very strict to heal things like ataxia and DH or to avoid fatigue, joint and muscle damage or damage done to other systems from the inflammation that the antibodies cause. 

[LauraTX]

AFitGirl:

 

I know some will disagree with me, but I am not quite as "anal" about possibly ingesting small amounts of gluten.  I do agree that you should be anal about avoiding foods that are likely to contain more than 20 ppm gluten content.  I was diagnosed with Celiac's 2 years ago. I do react to significant amounts of gluten, but I am not as severely sensitive as some.  For those that are severely sensitive, they do need to be very anal to avoid symptoms.

 

I have read that one research test program showed that 10 mg of gluten did not damage intestines of adults with celiacs in the program and that 50 mg of gluten did damage intestines.  So "a few molecules of gluten" may not be harmful, but you do need to minimize your gluten intake.

 

I am not as concerned about cross-contamination as some.  I try to take reasonable precautions, but I don't get paranoid about eating in restaurants or buying prepared foods that don't "guarantee" a gluten-free facility.  I do check all labels for ingredients and will not typically buy items that list products known to contain gluten. But I do consume Kikkoman soy sauce and Corona beer occasionally - both were shown in previous tests to contain less than 20 ppm million gluten, even though wheat or barley is used to produce them.  (I have read that the processing they use destroys much of the gluten.) 

 

For every meal I order at a restaurant, I do ask if the meal contains any gluten or wheat flour.  I previously had made the mistake of not asking when I thought a meal I often eat would be gluten free - but I then found that some restaurants do use gluten in the meal.  (In the past year I had two severe glutenings when I forgot to ask.)  So now I always ask.

 

So, yes you do need to always be "vigilant".  But you may not need to be "anal".

 

Redbeard52

 

 

While the over the top approach may not be necessary for everyone, I think your approach consuming corona and regular kikkoman is unwise.  Although you may not feel it, purposefully ingesting gluten containing products does harm you in the long run.  I urge you to re-think what you are doing.  You don't have to get outright glutening symptoms from something for it to cause damage in the small intestine.  A few molecules of gluten is not going to be what is transmitted through cross contamination, it is generally going to be much more, since even a tiny speck of wheat flour is much larger than a few molecules.

 

On the forum here we only support the spread of information from legitimate sources, and there is no science to support a person with Celiac disease purposefully eating gluten.