Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Scared To Eat!

rachbomb

By rachbomb
in Coping with Celiac Disease

Recommended Posts

rachbomb Rookie
rachbomb
Posted

I am new to all of this (dx Celiac, gluten-free for about 2 months) and it seems like I only get a few good days before I make a mistake and feel sick for a week. I recently discovered I can't have dairy either, which complicates it all. Overall I am much better but the bad days outnumber the good days still and I just want to cry. I feel like I am so diligent and my doctor is concerned that I am continuing to lose weight but I am so scared to eat because I am clearly getting glutened somewhere and I can only figure it out about half the time. Any advice for getting through these first months?

~Rachel

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Fire Fairy Enthusiast
Fire Fairy
Posted

I am new to all of this (dx Celiac, gluten-free for about 2 months) and it seems like I only get a few good days before I make a mistake and feel sick for a week. I recently discovered I can't have dairy either, which complicates it all. Overall I am much better but the bad days outnumber the good days still and I just want to cry. I feel like I am so diligent and my doctor is concerned that I am continuing to lose weight but I am so scared to eat because I am clearly getting glutened somewhere and I can only figure it out about half the time. Any advice for getting through these first months?

~Rachel

I'm fairly new so I'll just give you a little advice. I'm sure some of the folks who have been here longer can be of more help. If you haven't already, get rid of wooden spoons and old plastic ware in your kitchen, also any scratched no-stick pans. Most folks on here recommend shopping the perimeter at the grocery store. You want to eat a lot of fresh fruit and veggies. Quinoa is a good source of protein and easy to prepare.

Link to comment
Share on other sites
kwylee Apprentice
kwylee
Posted

I had that scared to eat feeling when this all started too. Don't intend to do it over again, but if I had to, I'd:

1. Choose ONE food at a time to eat, then I added one additional food at regular intervals, e.g., every other day. (Yes, sounds extreme and very boring at first, but I wasn't very hungry in the first few weeks. The food choices grow exponentially and it was the only way I could gauge what was really happening from what I ingested)

2. At first, choose from only unprocessed foods, fresh meat and produce, olive oil, etc., no gluten-free goodies until you are feeling much better, and then add those sparingly.

3. Consider that soy is a culprit for me and many

4. Keep in mind that something you've ingested or done all your life may now give you problems. Every food, every lotion, every vitamin is now suspect.

5. Drink a lot of fresh water

6. Write down everything you eat and the time, write down symptoms and the time, include when you feel good and the time

This got me through the first weeks. I made a few mistakes but had I followed what is above from the start, it would have been easier for me. Hope it helps in all or part.

Link to comment
Share on other sites
Kimbalou Enthusiast
Kimbalou
Posted

It's hard in the beginning, but you will find out what foods work for your stomach and which ones don't. As for milk, try Almond Milk! I had a very easy time switching over to it...it's healthier for you too. It's in the section with all the other regular milk. They have different flavors too. Blue diamond or Silk...either one is good. Also try Muscle Milk, it's dairy free and gluten free. Tastes pretty good. There are many alternatives out there.

Another thing I do: make sandwiches out of corn tortillas. Gluten free bread is very expensive. Corn tortillas are cheap! I put ham and cheese on them, melt in microwave...add a little mayo, etc. Or tuna works too. You just have to look at eating in a different way...you will be fine...trust me!

Link to comment
Share on other sites
rachbomb Rookie
rachbomb
  • Author
Posted

Thank you - this forum has been a lifesaver for me and I really appreciate your responses! While I slowly added food for the first month or so, I started adding things much more quickly lately (because I was getting bored) but I'm sure that is the problem. I have also been basically living on Glutino gluten-free crackers but now realize those might be adding to the problem as well. I guess I will have to go back to my "safe" diet (rice, beans, chicken, beef, veggies, olive oil). Should I avoid corn up front as well (I'm a big fan of corn tortilla chips)? While boring eating is no fun, it has to be better than getting glutened all the time!

Link to comment
Share on other sites
Kimbalou Enthusiast
Kimbalou
Posted

Thank you - this forum has been a lifesaver for me and I really appreciate your responses! While I slowly added food for the first month or so, I started adding things much more quickly lately (because I was getting bored) but I'm sure that is the problem. I have also been basically living on Glutino gluten-free crackers but now realize those might be adding to the problem as well. I guess I will have to go back to my "safe" diet (rice, beans, chicken, beef, veggies, olive oil). Should I avoid corn up front as well (I'm a big fan of corn tortilla chips)? While boring eating is no fun, it has to be better than getting glutened all the time!

I can tolerate corn tortillas and chips just fine. Regular, whole kernel corn is sometimes an issue. Generally, corn should be ok. You can get pretty creative with corn tortillas! They are quick and easy to deal with too.

Link to comment
Share on other sites
Kimbalou Enthusiast
Kimbalou
Posted

just make sure you read the label on the tortillas...some corn tortillas actually contain flour...weird huh?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


rachbomb Rookie
rachbomb
  • Author
Posted

Weird - thanks for the info on corn tortillas.

As for cleaning out my kitchen, I've been wondering how far to take it. My husband is being supportive but isn't going to go 100% gluten-free (he isn't a big fan of gluten-free chips and he loves his protein shakes). I cleaned out the pantry and gave him one shelf. We replaced the pans we use most often but I know there is more we can and maybe should do.

Link to comment
Share on other sites
kwylee Apprentice
kwylee
Posted

Also on those tortilla chips, I can't eat most of them because of the demon soy!!! But FRONTERA makes tortilla chips without soybean oil and I tolerate them just fine. But keep in mind, may be the corn for you; corn gives many people problems.

Link to comment
Share on other sites
rachbomb Rookie
rachbomb
  • Author
Posted

Also on those tortilla chips, I can't eat most of them because of the demon soy!!! But FRONTERA makes tortilla chips without soybean oil and I tolerate them just fine. But keep in mind, may be the corn for you; corn gives many people problems.

I didn't even think about soy being in chips - ARG, so much to learn! Maybe I will stick to no processed food until I feel good for a week and then I will try to add corn as my first new food so I get tortilla chips back - BUT only ones without soy.

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    2. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    3. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    4. Smith-Ronald
      - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    5. Bayb
      - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Lymph nodes

      By Smith-Ronald · Posted

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...