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

Scared To Eat!


rachbomb

Recommended Posts

rachbomb Rookie

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


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



Celiac.com Sponsor (A8-M):



Fire Fairy Enthusiast

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.

kwylee Apprentice

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.

Kimbalou Enthusiast

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!

rachbomb Rookie

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!

Kimbalou Enthusiast

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.

Kimbalou Enthusiast

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


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



Celiac.com Sponsor (A8-M):



rachbomb Rookie

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.

kwylee Apprentice

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.

rachbomb Rookie

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.

Archived

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

  • 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. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,471
    • Most Online (within 30 mins)
      7,748

    731049
    Newest Member
    731049
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.