Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Completely Paranoid About Gluten Now


srfjeld

Recommended Posts

srfjeld Apprentice

I only found out I have Celiac on Friday so I finished up a couple things in my fridge and went completely gluten-free on Sunday. Now, I'm reading everything I can get my hands on and I'm completely freaked out about everything having gluten in it... or cross contamination. I'm starting to read about all these plaguing symptoms I've had that I never knew were even anything... like napping for 3 hours a day on my days off, usually b/c we would go out to bfast and I'd have some gluten bomb (like pancakes or waffles) that would knock me out.

Last night, I was exhausted after a long day, as usual and passed out pretty quickly as soon as I hit the sheets but not long after I was woken up thinking the house was shaking but then I realized it was my body (just a tad - not convulsion-like) and very shortly afterward I could not stop moving around. I just couldn't find a comfortable position... at all! I'm guessing this is like RLS? So then I started freaking out wondering what I could have eaten or done that had gluten in it. The only things I'm not 100% sure of are Kroger brand garlic salt and vanilla extract, and I made a batch of Betty Crocker's gluten-free choc chip cookies and used an old wooden spoon. This morning I read on here that wooden spoons can be contaminated. Would that be enough to cause me to way uncomfortably from my sleep?

Ugh, it just makes me not want to eat! I don't trust anything!

To make matters even more difficult. I'm getting ready to start a 12 week Candida cleanse taking Nystatin and doing the Candida diet. My naturopath told me I have a horrible case and that's why she's putting me on 2 programs of the Nystatin. I was reading up on the diet last night and it looks like I won't be able to eat hardly anything... no grains at all for the first 2 weeks to starve the yeast. And definitely no sugar. Hence my making the choc chip cookies last night. Getting my sugar fix at the last minute! ;)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Kathy59 Rookie

First, try to relax! I was Dx Feb 1. Read everything you can on this site...very educational. I learned a lot about cc in the kitchen. Second, understand it is a learning curve! I am still learning!

Your body may be reacting to either getting some gluten or getting rid of the gluten in your system.

Just stay on course and you will see a differance. I joined my husband and co workers at a Mexican Rest a couple of weeks ago for dinner. I thought I could just order a taco salad and be ok...I didn't do a very good job of explaining my condition..the taco salad was in a flour shell; they were very nice about taking it back and giving me the taco salad w/o the shell! I think they may have just taken it out of the shell and put it on the plate. After eating the salad, in 20 minutes I was soooo sleepy!!! I was wiped out for 4 days! I actually thought I was in a depression ( I was) then I woke up one morning and felt better, had energy and didn't hurt as bad! Now I know I was glutened! My point is I've learned a valuable lesson!

With regards to seasonings..I don't know about Kroger, you could contact the company; however, I use McMormick seasonings. They are gluten-free, excluding the combo seasonings, such as, Montreal Steak Seasonings. I have actually found that food taste much better without all the gluten additives.

Don't focus on what you can't have; focus on what you can have! Good Luck!

Bev111 Newbie

First, try to relax! I was Dx Feb 1. Read everything you can on this site...very educational. I learned a lot about cc in the kitchen. Second, understand it is a learning curve! I am still learning!

Your body may be reacting to either getting some gluten or getting rid of the gluten in your system.

Just stay on course and you will see a differance. I joined my husband and co workers at a Mexican Rest a couple of weeks ago for dinner. I thought I could just order a taco salad and be ok...I didn't do a very good job of explaining my condition..the taco salad was in a flour shell; they were very nice about taking it back and giving me the taco salad w/o the shell! I think they may have just taken it out of the shell and put it on the plate. After eating the salad, in 20 minutes I was soooo sleepy!!! I was wiped out for 4 days! I actually thought I was in a depression ( I was) then I woke up one morning and felt better, had energy and didn't hurt as bad! Now I know I was glutened! My point is I've learned a valuable lesson!

With regards to seasonings..I don't know about Kroger, you could contact the company; however, I use McMormick seasonings. They are gluten-free, excluding the combo seasonings, such as, Montreal Steak Seasonings. I have actually found that food taste much better without all the gluten additives.

Don't focus on what you can't have; focus on what you can have! Good Luck!

Bev111 Newbie

Sometimes it takes 6 months before your stomach heals. So you will be having symtoms even at the 3d month. It is overwhelming at first and some days you think I cannot do this....it will get better. It has taken me 6 months for healing and now I am about 98%. Food just went right through me.....now its so good, I'm now reading all my cookbooks and trying to make them gluten free. So hang in there.

Skylark Collaborator

Don't panic. You lived this long eating wheat. Mistakes here and there may make you uncomfortable and may even set you back for a time, but they will not kill you. Your body is also going to be a little whacky, especially with a yeast kill coming. I said to be ruthless about gluten in my other response to you and that still holds true, but you WILL get glutened occasionally unless you live in a bubble.

There are a lot of details to a strict gluten-free diet and a lot of people feel overwhelmed at first. I've been at this for five years and I'm still learning new foods I can have (buckwheat and teff) and little "gotchas" that help me eat out more safely. Just relax and start with simple whole foods while you're sorting out what you can have as far as processed foods. Fruits, veggies, meats you cook yourself, eggs, beans, cheeses, rice, and potatoes are simple and reliably safe. You may have to cook more than you're used to at first, but it won't seem like so much effort as you feel better and have more energy.

jackay Enthusiast

It is very normal to be paranoid at first and question everything you eat, every spoon you use, etc. I never thought the paranoia would go away but it does. It does get better.

I'm also doing a candida cleanse and limiting what foods I can eat. After about seven weeks, I have added back a limited amount of rice and fruit. Every thing I do eat tastes simply wonderful. I never appreciated the flavor of foods like I do now. Turnips even taste yummy!

srfjeld Apprentice

Thank you all for posting. I apologize if it seemed I was yelling in my original post (with all the exclamation points)... it was early in the morning after a bad night of sleep... and honestly, I'm still a bit paranoid. ;)

One more question. I know I have get get rid of the porous items like wooden spoons, cutting boards, etc... but I'm wondering about our cast iron pans and can we just clean the heck out of our grill? There's no way we're getting rid of that. We may be able to purchase more grates in the future, but that's my boyfriend's baby. He's pretty much doing the gluten-free thing with me, btw.

Thank you,

Stephanie


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

One more question. I know I have get get rid of the porous items like wooden spoons, cutting boards, etc... but I'm wondering about our cast iron pans and can we just clean the heck out of our grill? There's no way we're getting rid of that. We may be able to purchase more grates in the future, but that's my boyfriend's baby. He's pretty much doing the gluten-free thing with me, btw.

Thank you,

Stephanie

While I don't have any, I've read on the forum that people have put cast iron pans in their self-cleaning ovens to get the gluten out of them. Of course, they'd have to be seasoned again.

Also, Easy-Off makes a BBQ grill cleaner so I would think it or even regular oven cleaner would effectively clean the grates. Obviously that's not to be used on other parts of the grill, only the cooking grates

Kathy59 Rookie

I just purchased two flexable cutting mats. We are getting ready to travel to Indiana from NC and staying in hotel with kitchenette..using to put on counters to prepare my food! Got them at the $ Tree, plus new spatulas, measuring cups and spoons! Easy to replace; everything a $.

Bobbijo6681 Apprentice

From what I have read on here you can put your cast iron in a self cleaning oven....but it makes a HUGE mess. Just be prepared to clean the oven when you are finished with it. Also with the grill if you clean it well it should be fine, but if you are worried you can put a piece of aluminum foil down before you put your food on it just to be cautious.

Hope things level out for you soon!!!

GFinDC Veteran

I put my cast iron skillet on the stove with some soap and water in it and boiled it good for 1/2 an hour. Scrubbed it out good and haven't had a problem with it.

Darissa Contributor

I'm sorry you are going through the stressing part of finding out about celiac disease and wondering what is gluten-free and worrying about CC. It is hard when you are first dx, but it does get easier! I remember going through the grocery store for 3 hours, crying, with my cell phone in hand calling the different companies about their products! It is overwhelming at first, but it does get easier.

We met with a Registered Dietician that specialized in eating gluten-free. Our doctor recommended him. We spent 2 hours with him. He gave us so much information, and answered so many questions. You might find out if your insurance would pay for a consultation with a RD. It really helped me a lot. Or might consider paying out of pocket if you can because it is so worht it!

You also might want to see if there is a Celiac Support group where you live. THey can be very helpful and informative.

I spent the first few months contacting companies via email to recieve gluten free list if available and started a gluten-free file on my computer that was easily accessible. I also downloaded the safe and nonsafe gluten free list from this website to my phone, that way I had it available when shopping and checking ingredient labels.

We did get new cutting boards, wooden utensiles, a new mixer, toaster and cast iron skillet. I wanted to make a clean cut from anything that could harbor gluten. My entire family eats gluten-free when they are home. THat is all I cook now. Makes it much easier in our family situation.

Good luck. Know that it does get easier. It becomes a lifestyle change and a new habit. We mainly struggle now when traveling or eating out, but that is slowly getting better as we learn new things.

Darissa

T.H. Community Regular

Oh...did you start taking the Nystatin??? If so, you should really stop - it has gluten in it!! I was put on nystatin after my diagnosis, and felt ill, and finally looked it up and found out it had gluten and had to get a different perscription, ugh.

There's a good site for looking up your drugs, here: Open Original Shared Link

It's been a life-saver. I've had SO many doctors prescribe something for me that turned out to have gluten that now I double check everything before I even go to the pharmacy. Probiotics, vitamins, medicine, etc..... It's insane.

And re: the yeast...honestly? You might want to wait on that diet until after you have been gluten free for a few months. Your body is going to be healing damage that's been progressing for years, trying to get your immune system back in order (since you're immuno compromised while eating gluten), and you won't be absorbing enough nutrients, calories, or anything else until that's done. Adding a new diet where you are limiting your food so severely could be really detrimental.

I have a GI doc who is from asia, is great about listening to the whole body, and the patient, and if I say I have a problem that doesn't show up on a test, he believes me, not the test. He's worked with celiac disease folk as most of his patients, and he's told me about a number of dietary changes to make, but most of them were 'once you've healed,' so we don't stress your system overly much. IT sounded like good advice to me, anyway. If your naturopath hasn't worked with celiac folk before, you may want to see if she's willing to talk to others who have, yeah?

I only found out I have Celiac on Friday so I finished up a couple things in my fridge and went completely gluten-free on Sunday. Now, I'm reading everything I can get my hands on and I'm completely freaked out about everything having gluten in it... or cross contamination. I'm starting to read about all these plaguing symptoms I've had that I never knew were even anything... like napping for 3 hours a day on my days off, usually b/c we would go out to bfast and I'd have some gluten bomb (like pancakes or waffles) that would knock me out.

Last night, I was exhausted after a long day, as usual and passed out pretty quickly as soon as I hit the sheets but not long after I was woken up thinking the house was shaking but then I realized it was my body (just a tad - not convulsion-like) and very shortly afterward I could not stop moving around. I just couldn't find a comfortable position... at all! I'm guessing this is like RLS? So then I started freaking out wondering what I could have eaten or done that had gluten in it. The only things I'm not 100% sure of are Kroger brand garlic salt and vanilla extract, and I made a batch of Betty Crocker's gluten-free choc chip cookies and used an old wooden spoon. This morning I read on here that wooden spoons can be contaminated. Would that be enough to cause me to way uncomfortably from my sleep?

Ugh, it just makes me not want to eat! I don't trust anything!

To make matters even more difficult. I'm getting ready to start a 12 week Candida cleanse taking Nystatin and doing the Candida diet. My naturopath told me I have a horrible case and that's why she's putting me on 2 programs of the Nystatin. I was reading up on the diet last night and it looks like I won't be able to eat hardly anything... no grains at all for the first 2 weeks to starve the yeast. And definitely no sugar. Hence my making the choc chip cookies last night. Getting my sugar fix at the last minute! ;)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.