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

Feeling Frustrated

Jamieappleby

By Jamieappleby
in Coping with Celiac Disease

Recommended Posts

Jamieappleby Newbie
Jamieappleby
Posted

So I just started the gluten free diet a week ago and have made sure absolutely all of my food is gluten-free...the first three days were amazing, last few days I have been sick after every meal with the exception of breakfast which is always the same thing. I'm very careful not to cross contaminate, use my own toasted, etc. I did read posts about "leaky guts" and feeling sick for a while but I seem to be great until after I eat a meal and then I'm sick for the rest of the day or a few hours depending on what I eat. Did anyone else experience this when they first started? I'm so careful with everything I put in my mouth, but I'm not sure what's making me so sick or what gluten could be getting in. Any experiences or thoughts would be wonderful. Have a wonderful Christmas everyone!

Jamie

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Hi, Jamie, and welcome.

If you have damage to your villi caused by celiac disease, then it will take some time to heal. Until it does, you may experience symptoms after eating, even if the food is gluten-free. At one week in, you are just beginning the journey.

I had advanced damage, and while I felt better immediately, symptoms continued for a few months, gradually abating. My last bout of vomiting was about six weeks in--I have not done it since. That was more than ten years ago.

FooGirlsMom Rookie
FooGirlsMom
Posted

Hi Jamie,

I had the same issue only my honeymoon period lasted almost 2 weeks. I was riding high, thinking, oh wow, I feel almost normal. Then I got slammed. Secondary food allergies kicked in. Over the course of the last 6 weeks or so I've been experimenting with removing other foods from my diet. I found that I reacted very badly to soy & dairy. Then corn seemed to upset things. I am still working with that one because it seems to be intermittent. I have had some horrific reactions to "safe" foods. I did some reading and it's got to be related to the leaky gut issue we have with Celiac. One thing to be watchful for is overeating. I'm not sure why but some of us cannot get "stuffed" when we eat. Others have weakened abilities to process sugars, etc.

Just to give you an idea...I'm feeling best right now on a diet of meats, green veggies. Fruit seems ok if I eat it by iself.

Hang in there. The road back to health is sometimes paved with many challenges. I have had 2 meltdowns due to food frustrations since October.

FooGirlsMom

Jamieappleby Newbie
Jamieappleby
Posted
  • Author

Hi, Jamie, and welcome.

If you have damage to your villi caused by celiac disease, then it will take some time to heal. Until it does, you may experience symptoms after eating, even if the food is gluten-free. At one week in, you are just beginning the journey.

I had advanced damage, and while I felt better immediately, symptoms continued for a few months, gradually abating. My last bout of vomiting was about six weeks in--I have not done it since. That was more than ten years ago.

Thank you Peter!

Jamieappleby Newbie
Jamieappleby
Posted
  • Author

Thank you guys, I need to practice being more patient...it just felt too good being free or sickness for those first few days! Thank you again for the quick responses. : )

behappy123 Newbie
behappy123
Posted

Thank you guys, I need to practice being more patient...it just felt too good being free or sickness for those first few days! Thank you again for the quick responses. : )

Omg, I had the same experience. I am bad at dealing with this, because I already have a chronic illness and other problems. I have been puffy in my eyes and cheeks all week, and don't know what is causing it. I'm off gluten and dairy...

dilettantesteph Collaborator
dilettantesteph
Posted

I had the same experience and in my case it turned out to be an additional reaction to avenin in oats, and reaction to very low levels of gluten contamination. I had to eliminate most processed foods and I sort and wash my gluten free grains as well as most everything else. I also have to watch how I source my food very carefully.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Omg, I had the same experience. I am bad at dealing with this, because I already have a chronic illness and other problems. I have been puffy in my eyes and cheeks all week, and don't know what is causing it. I'm off gluten and dairy...

My puffy face and eyes seemed to be due to soy. Once I eliminated that I got much much better. Just a thought

behappy123 Newbie
behappy123
Posted

My puffy face and eyes seemed to be due to soy. Once I eliminated that I got much much better. Just a thought

hmm I'm not eating any soy and I have been only living off corn nuts, gluten free cereal, almond milk, gluten free bread, and turkey meat.

Skylark Collaborator
Skylark
Posted

hmm I'm not eating any soy and I have been only living off corn nuts, gluten free cereal, almond milk, gluten free bread, and turkey meat.

Gosh that's a lot of grains. Try shifting your diet towards a lot of fruit and vegetables and easing off all the grain products.

behappy123 Newbie
behappy123
Posted

Gosh that's a lot of grains. Try shifting your diet towards a lot of fruit and vegetables and easing off all the grain products.

Okay. Yah I need to add salads etc. I don't know what I am going to do once school starts again. What the heck am I going to take for lunch? I don't know how you guys do it!

Monklady123 Collaborator
Monklady123
Posted

Okay. Yah I need to add salads etc. I don't know what I am going to do once school starts again. What the heck am I going to take for lunch? I don't know how you guys do it!

Taking lunch is definitely a challenge in the beginning, but doable. Some ideas: (assuming no other food intolerances, and do you have a microwave at school?)

-- a big salad, with some sort of protein -- chicken, or ham.

-- hard boiled eggs

-- peanut butter and jelly on Udi's bread

-- leftovers from dinner

-- frozen entrees every once in awhile -- like Amy's Gluten-free mac and cheese.

-- hummos and chips/crackers

-- cheese, salami, crackers

-- yogurt

-- fruit

Just some off the top of my head. I tend to just take leftovers from dinner because I'm lazy. :P However, I do have access to a microwave so that makes it easy.

behappy123 Newbie
behappy123
Posted

Taking lunch is definitely a challenge in the beginning, but doable. Some ideas: (assuming no other food intolerances, and do you have a microwave at school?)

-- a big salad, with some sort of protein -- chicken, or ham.

-- hard boiled eggs

-- peanut butter and jelly on Udi's bread

-- leftovers from dinner

-- frozen entrees every once in awhile -- like Amy's Gluten-free mac and cheese.

-- hummos and chips/crackers

-- cheese, salami, crackers

-- yogurt

-- fruit

Just some off the top of my head. I tend to just take leftovers from dinner because I'm lazy. :P However, I do have access to a microwave so that makes it easy.

Yah that sounds good, I just can't have dairy or nuts or eggs so I need to think of more ideas. You guys are experts, I still don't even have a grasp of grocery shopping. I'm so lost as to what to eat. Plus gluten free stuff is so expensive, well at least where I live.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748
    bostonbell
    Newest Member
    bostonbell
    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

    • Beverage
      Is this celiac?

      By Beverage · Posted

      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      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
      Celiac getting dentures

      By Scott Adams · Posted

      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
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      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.
×
×
  • 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.