New to gluten free, thought I was getting it, but new info leaving me at a loss.

[RDLiberty]

So, new to all this.

Was diagnosed with Celiac by a positive anti-bodies blood test run by my doctor. I wasn't even aware she was ordering the test but apparently it's normal to do so for those of us with type 1 Diabetes and other auto-immune issues (also have hoshimotos). I had thyroid cancer and had a full thyroid removal last fall.

I found out about the celiac about 6 weeks ago. I dove right in, drank my last beer (it stung because I'm a beer drinker), and went full gluten free. Then, today I happened to see an article about how you have to get all new cooking utensils and that washing them isn't even good enough. Okay, so no plastic, wood, or scratched dishes, I can do that, but do I really need to replace all my cast iron pans, stainless steel pots, forks, knives, spoons, and serving spoons, and stop using the dish washer because my family members wash dishes in it too and they aren't gluten free?

What's more, I started reading another article where they said that sometimes the FDA approved gluten free (no wheat, rye, barley, etc) isn't good enough and that corn, rice, and sorghum can also be an issue. Seriously? 90% of the certified gluten free foods I'm buying contain those ingredients. Is it only an issue for some people, like those who are really seriously sick if they eat gluten? It's worth noting that I don't have any symptoms and I feel fine. When the doctor called with the blood test results I was shocked because I felt and feel fine.

 I guess my main concern is, based more off the statistics that say you have a slightly higher mortality rate with celiac disease, is being gluten free not good enough? Am I slowly sending myself to the grave by not giving up corn and rice too? Am I just being a headcase, which yes, I tend to be anyway? If I feel okay, should I just do my best to be gluten free and avoid cross contamination and ignore all the chatter by so-called experts that seem to be trying to scare people? I mean, if it makes you sick, fine, but am I seriously going to destroy my small intestine if I don't become obsessively perfect? I certainly don't feel bad. Honestly, I'm doing well. I'm lifting weights, I don't have any stomach issues (well, occasional constipation, but I had that long before I had celiac, like over a decade ago), and I recovered from my thyroid surgery in a couple weeks. I have no problem going gluten free, I've already done it, but am I missing anything?

I guess I'm just scared and needing reassurance, but seriously, how far can this stuff be taken before you call BS?

Thanks, RD.

[trents]

Welcome to the forum, RD!

First, it is not unusual at all for people diagnosed with celiac disease to have no discernible physical symptoms. We call them "silent" celiacs. To a large degree, I was one of them.

Second, just because you were recently diagnosed with celiac disease does not mean you haven't been living with the condition long before that. Most of us in retrospect realize that the onset of the disease happened years before the diagnosis. In my case, I had laboratory evidence (elevated liver enzymes) for 13 years before I finally got diagnosed.

Third, you may not be one who has to throw away all their cookware and be concerned that dishes are not getting clean enough in the dishwasher because other members of the household who are not gluten free are using the dishwasher. Now, that can be a concern for celiacs who fall into the super sensitive category but it doesn't sound like you fall into that category. Just use common sense and take some obvious precautions against getting glutened. One size doesn't fit all.

Fourth, since you apparently have no physical symptoms from consuming gluten, it would be important for you to get regular celiac antibody testing done to see if you are successful in your efforts to eat gluten free. I would recommend you get tested yearly.

So, just relax and don't make this more difficult than it needs to be.

Edited May 29, 2023 by trents

[RDLiberty]

8 minutes ago, trents said:

Welcome to the forum, RD!

First, it is not unusual at all for people diagnosed with celiac disease to have no discernible physical symptoms. We call them "silent" celiacs. To a large degree, I was one of them.

Second, just because you were recently diagnosed with celiac disease does not mean you haven't been living with the condition long before that. Most of us in retrospect realize that the onset of the disease happened years before the diagnosis. In my case, I had laboratory evidence (elevated liver enzymes) for 13 years before I finally got diagnosed.

Third, you may not be one who has to throw away all their cookware and be concerned that dishes are not getting clean enough in the dishwasher because other members of the household who are not gluten free are using the dishwasher. Now, that can be a concern for celiacs who fall into the super sensitive category but it doesn't sound like you fall into that category. Just use common sense and take some obvious precautions against getting glutened. One size doesn't fit all.

Fourth, since you apparently have no physical symptoms from consuming gluten, it would be important for you to get regular celiac antibody testing done to see if you are successful in your efforts to eat gluten free. I would recommend you get tested yearly.

So, just relax and don't make this more difficult than it needs to be.

Thank you, Trent.

The thing that totally took me by surprise was that when I was 7 or 8 years old, I had a stomach biopsy of some type done for celiac and it was negative. I guess that doesn't mean anything because you can develop celiac disease at any point in life? I'm 22 now.

I go back to my endocrinologist in July for thyroid follow up, and I'll ask her to run another celiac anti-body test just to see if there's any change. I thought I was being super careful but finding out about sponges and such was a surprise. Now I'm running scared that I'm contaminating myself every time I fill my cats' dry food bowl. I guess that won't be an issue as long as I am careful to wash my hands after handling pet food, which I am.

One more question. Does anyone here use the GliadinX supplement? I just got a bottle of it and have used it once, but because I have no stomach issues anyway, I can't test it against anything. There was very little info on the bottle. Is it something I can take daily with my meals since I'm being paranoid about cross-contamination, or will that weaken the effectiveness if I take it too often? Anyone have a good informational site on the product?

Thank you again, so much!

 

 

[trents]

Celiac disease does not damage the stomach but rather the lining of the small bowel. So, if they biopsied your stomach, they wouldn't have found anything. One thing we see with celiac disease in children and youth is that it can come and go, or more properly, go into remission. Young people are very resilient and their bodies do a better job of fighting disease conditions than when we get older. Even though celiac disease goes into remission sometimes, it almost always resurfaces at some point.

Yes, we have people participating in this forum who take GliadinX and at least some of them claim it helps them to avoid illness when they may experience CC (Cross Contamination). Our forum administrator, Scott Adams, is one of them. I have tried GliadinX and my experience was that the supplement itself made me ill. I know that is unusual but in corresponding with GliaddinX's creator, who is a sponsor for this forum and an occasional contributor, he told me that a few others have reported this as well. But he doesn't know why it would make anyone ill. Keep in mind that GliadinX does not give one a license to ignore gluten free precautions. It's design is to cover CC only, not large amounts of gluten. I do not think it would lose it's effectiveness if taken regularly but it isn't cheap if you plan on doing that.

[RDLiberty]

54 minutes ago, trents said:

Celiac disease does not damage the stomach but rather the lining of the small bowel. So, if they biopsied your stomach, they wouldn't have found anything. One thing we see with celiac disease in children and youth is that it can come and go, or more properly, go into remission. Young people are very resilient and their bodies do a better job of fighting disease conditions than when we get older. Even though celiac disease goes into remission sometimes, it almost always resurfaces at some point.

Yes, we have people participating in this forum who take GliadinX and at least some of them claim it helps them to avoid illness when they may experience CC (Cross Contamination). Our forum administrator, Scott Adams, is one of them. I have tried GliadinX and my experience was that the supplement itself made me ill. I know that is unusual but in corresponding with GliaddinX's creator, who is a sponsor for this forum and an occasional contributor, he told me that a few others have reported this as well. But he doesn't know why it would make anyone ill. Keep in mind that GliadinX does not give one a license to ignore gluten free precautions. It's design is to cover CC only, not large amounts of gluten. I do not think it would lose it's effectiveness if taken regularly but it isn't cheap if you plan on doing that.

I often wondered about that. The doctors weren't very clear about their reasoning at the time and they also didn't give any further information. Plus, obviously it's been a very long time and I remember very little of the whole situation.

Sorry to hear it makes you sick. It didn't seem to have any ill effects on me personally, but I've only taken it once. I know it's not for large amounts of gluten, but rather a back up to cross contamination only. I'm just wondering if I should be taking it since I'm unsure how to make a household that is not gluten free, safe for me as a celiac. I'm planning on ditching all plastic utensils and nonstick surfaces that may be scratched. From what I've read, a good scrubbing with warm water and soap is enough to rid glass and stainless still of any gluten residue. I've also read that Lysol wipes can be handy as part of a two or three part washing system to rid of gluten on surfaces. Right now I'm worried because even my glass and stainless steel pieces have been washed in shared dish water, with sponges, that have been in contact with gluten. I guess it's going to be a slow process to fully safe guard my surfaces.

On that note, since I don't have any symptoms, what does that mean exactly? I know I can still have celiac (silent celiac) and I know it doesn't mean I'm not doing damage if I come in contact with gluten, but is it good news at all that I'm not experiencing physical illness? I can't seem to find a straight answer on that anywhere. I would assume that not being sick probably means I'm not bad off right now, but is that just wishful thinking? My dr. hasn't been clear on much of anything.

With that, sorry for all these questions, I can be a bit long winded.

 

[RMJ]

10 minutes ago, RDLiberty said:

From what I've read, a good scrubbing with warm water and soap is enough to rid glass and stainless still of any gluten residue. I've also read that Lysol wipes can be handy as part of a two or three part washing system to rid of gluten on surfaces. Right now I'm worried because even my glass and stainless steel pieces have been washed in shared dish water, with sponges, that have been in contact with gluten.

 

I’m not sure what Lysol wipes would do.  Gluten can’t be inactivated with Lysol.  It has to be physically removed.  

As for your glass and stainless pieces washed in shared dish water, with sponges, as long as they’re rinsed well afterwards with clean water and there is no visible residue left they should be fine.  The washing/sponging loosens any gluten or other material then clean water can rinse it off.  

Some with celiac disease develop other food sensitivities - they get unpleasant symptoms from other foods. If you don’t have symptoms then corn, rice and/or sorghum should be fine.

July would be a bit soon to retest your antibodies and see any difference.  Six months to a year would be better.

[trents]

I would think that using shared dishwater is not an issue as long as you rinse well. If you are worried about CC from shared countertops, just make sure you cut and prepare food on a clean plate or cutting board/cutting plastic sheet.

Being a silent celiac is both a blessing and a curse. It's a blessing in that it spares you pain and suffering (at least in the short run) when you do accidentally get glutened. It' a curse in that it may hide damage that is being done when you do get glutened, especially in the case where is happening regularly. Don't take this as a definitive word of truth but I also suspect that silent celiacs are less sensitive to incidental gluten exposure and MAY not need to be hyper vigilant about CC as do their more sensitive brethren. I have no proof of that. It's just an impression I have gotten from participating on this forum for quite a few years and reading the posts of many people with various experiences. One thing that is lacking in your case is a biopsy of the small bowel lining which would have given you an idea of how much damage you have suffered. I'm kind of surprised that wasn't done as that is the usual path of diagnosis.

That your doctor hasn't been very clear with you is a very common experience of the celiac community. It's often the case that docs don't know much about gluten disorders, especially primary care docs. Your best source of information is this community and what you can find on the internet.

One thing to be aware of is that once you have been gluten free for awhile it is common to become much more sensitive to exposure than before diagnosis when you were eating gluten every day. A significant exposure may make you quite ill.

[RDLiberty]

3 minutes ago, RMJ said:

I’m not sure what Lysol wipes would do.  Gluten can’t be inactivated with Lysol.  It has to be physically removed.  

As for your glass and stainless pieces washed in shared dish water, with sponges, as long as they’re rinsed well afterwards with clean water and there is no visible residue left they should be fine.  The washing/sponging loosens any gluten or other material then clean water can rinse it off.  

Some with celiac disease develop other food sensitivities - they get unpleasant symptoms from other foods. If you don’t have symptoms then corn, rice and/or sorghum should be fine.

July would be a bit soon to retest your antibodies and see any difference.  Six months to a year would be better.

That makes me feel much better. I know I'm going to have to be more careful regarding my household practices, but geez, some of these articles make it sound like you're signing your own death certificate if you don't become a paranoid nut about every little thing.

I guess I'm just scared I'm going to have to go to a diet of nothing but fruit, vegetables, and meat, and it makes me want to cry (maybe I'm being a wimp, but that's the truth), thinking I'm going to have to give up more than what I already have.

I'll talk to the doctor for sure. I have to have checkups every few months for the thyroid anyway, so if I need to wait for the next celiac antibody test, I will.

Thank you so much.

 

[RDLiberty]

5 minutes ago, trents said:

I would think that using shared dishwater is not an issue as long as you rinse well. If you are worried about CC from shared countertops, just make sure you cut and prepare food on a clean plate or cutting board/cutting plastic sheet.

Being a silent celiac is both a blessing and a curse. It's a blessing in that it spares you pain and suffering (at least in the short run) when you do accidentally get glutened. It' a curse in that it may hide damage that is being done when you do get glutened, especially in the case where is happening regularly. Don't take this as a definitive word of truth but I also suspect that silent celiacs are less sensitive to incidental gluten exposure and MAY not need to be hyper vigilant about CC as do their more sensitive brethren. I have no proof of that. It's just an impression I have gotten from participating on this forum for quite a few years and reading the posts of many people with various experiences. One thing that is lacking in your case is a biopsy of the small bowel lining which would have given you an idea of how much damage you have suffered. I'm kind of surprised that wasn't done as that is the usual path of diagnosis.

That your doctor hasn't been very clear with you is a very common experience of the celiac community. It's often the case that docs don't know much about gluten disorders, especially primary care docs. Your best source of information is this community and what you can find on the internet.

One thing to be aware of is that once you have been gluten free for awhile it is common to become much more sensitive to exposure than before diagnosis when you were eating gluten every day. A significant exposure may make you quite ill.

Yes, definitely just have to be more aware of little things like surfaces and stuff. Definitely an adjustment.

I wondered about that. I'm just scared because I already have the diabetes against me, and I'm scared about my lifespan because of that, but then adding the celiac in, I feel like I'll be lucky to make it to 50 if I don't cut out everything but basically fruits, vegetables, and meat. This is turning out to be way more scary and difficult than I thought possible.

I'm thinking about going to a GI. I really like my endocrinologist, but she made it very clear that she doesn't know much about celiac beyond the basics. I'm really grateful for this site though. I've been using it to confirm a lot of things I can be sure of online.

That's good to know. Thank you for the heads up.

 

 

 

[trents]

Learning that you have celiac disease is a shocker to most people. It begins to dawn on them very quickly that it will demand major changes, not only in their eating habits but in their social lives as well. It can be overwhelming at first. But believe me, you will adjust and in time it will be come the new norm.

[RDLiberty]

2 hours ago, trents said:

Learning that you have celiac disease is a shocker to most people. It begins to dawn on them very quickly that it will demand major changes, not only in their eating habits but in their social lives as well. It can be overwhelming at first. But believe me, you will adjust and in time it will be come the new norm.

I really appreciate the help and assurance. As you navigate all this, how do you separate fact from fiction? I mean, I can read some articles and just tell that they're way too over zealous to push people in one direction or another. Besides this site, what are some trusted resources for information? I have used the Mayo Clinic and such, but they seem to be a tad limited on in depth resources.

[trents]

It can be challenging to separate fact from friction. On this website, the moderators and the knowledgeable ones will typically call out false information. And sometimes we just don't agree with one another. Celiac.org is another trusted source. The Gluten Free Watchdog is another but some features are not available without paying a fee to become a member I believe. NIH is a good source for finding research data. But you have to make room for individual experiences and also the fact that knowledge about gluten disorders is still behind the curve. Many questions remain unanswered but there is more and more research being done. We know much more than we did 20 years ago when I was diagnosed but there is still much to learn.

I sense that you are looking for a lot of pat, hard and fast answers but you need to realize that the celiac experience is not the same for everyone by a long shot. Somethings you just have to figure out for yourself through time and experience, i.e., what works for you and what doesn't work for you. I realize you have other medical conditions that make you want to get it just right from the get go but anxiety over it all may do more harm than a little CC here and there.

Edited May 29, 2023 by trents

[RDLiberty]

10 hours ago, trents said:

It can be challenging to separate fact from friction. On this website, the moderators and the knowledgeable ones will typically call out false information. And sometimes we just don't agree with one another. Celiac.org is another trusted source. The Gluten Free Watchdog is another but some features are not available without paying a fee to become a member I believe. NIH is a good source for finding research data. But you have to make room for individual experiences and also the fact that knowledge about gluten disorders is still behind the curve. Many questions remain unanswered but there is more and more research being done. We know much more than we did 20 years ago when I was diagnosed but there is still much to learn.

I sense that you are looking for a lot of pat, hard and fast answers but you need to realize that the celiac experience is not the same for everyone by a long shot. Somethings you just have to figure out for yourself through time and experience, i.e., what works for you and what doesn't work for you. I realize you have other medical conditions that make you want to get it just right from the get go but anxiety over it all may do more harm than a little CC here and there.

Thank you. I've been trying to weed out opinion pieces from fact. I've noticed that more reputable sites will cite actually studies and research, whereas some 'doctors' are pushing these extreme diets they claim are based in research, but they never include the studies or names tied to the studies, which I find extremely suspect. Just like those who claim that coffee and other legumes are bad for celiacs as well. Sorry, not giving up my coffee. lol

Yes, I am, and I know I shouldn't be. I'm just a very analytical and fact based person, so it's hard for me to deal with maybes. I guess I've got to get used to it. Funny enough, I was just thinking, all this stress and fear will do me in far before a touch of gluten here and there. I'm going to work on getting separate silverware and utensils, and I've got some new stainless steel pots and pans in my RV that were washed with a cross-contaminate sponge, but never used after that. I'll just give them a good scrub and use those from now on. It'll be an adjustment, but it's doable anyway.

[Scott Adams]

My daughter and I use GliadinX regularly with zero issues. If you plan to continue to eat outside your home you may want to look into trying this supplement as well--FYI: they are also a sponsor here. 

Regarding beer, this article may be helpful:

 

[RDLiberty]

On 5/29/2023 at 12:28 PM, Scott Adams said:

My daughter and I use GliadinX regularly with zero issues. If you plan to continue to eat outside your home you may want to look into trying this supplement as well--FYI: they are also a sponsor here. 

Regarding beer, this article may be helpful:

 

Thank you. I actually got a bottle already and have been using it daily until I can make sure my kitchen is contamination free. I need to buy new pots and pans, coffee cups, utensils, etc. I don't know how strict I actually need to be, but I'm going to be as strict as I can be. My biggest concern know is that I can't switch my pets to grain free food, so I'm still handling gluten containing pet food. I'm afraid that everytime I kiss my cat on the top of his head, I'm getting contaminated. Maybe that's just me being paranoid though.

And thank you so much for the beer article. I'll read that now. I so truly appreciate the help, really. I've been really anxious lately, just feels like so much to take in.