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

Newbie With Significant Challenges

I miss cookies

Recommended Posts

I miss cookies Newbie
I miss cookies
Posted

Hi everyone,

I have not been *officially* diagnosed yet but expect to be on Monday when the bloodwork results are in. I am 53 and have been sick for decades. Literally decades. I was constantly going back to the doctor maintaining I had ulcers and he just kept upp-ing my Prevacid dose. I am a little angry because now I expect I have been lacking important nutrients for decades and am probably at risk for osteo, etc.

My problem now is...... I am a 30+ year vegetarian and I am not willing to start eating meat. So what the heck can I eat now? Do I just live off plain vegetables and fruit? Seriously, that's not very realistic. Also, is there any hope of having my intestines recover at all after 53 years of eating gluten? I am quite depressed. :(

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

Celiac.com Sponsor (A8-M):


Bryan E Newbie
Bryan E
Posted

I haven't been sick as long as you but I am in the same boat. I am also a vegetarian and I have no idea what to eat. I can't eat gluten, dairy, or meat. There's not much left. If you don't mind I am going to follow this thread and try some of the suggestions that you receive.

tictax707 Apprentice
tictax707
Posted

1. Ok, Mr/Mrs "I miss cookies," first thing you should do is go out and find some gluten free cookies from liz lovely. They are fantastic, not just "fantastic for being gluten free." Make sure you get the gluten free kind as they make some gluten ones too.

2. I am pretty sure if you want to be a meatless celiac, you can do that just fine, provided that is really all you are not removing from the diet. If you can still have rice, corn, potato, quinoa, as well as dairy, soy, nuts, eggs you can totally do this.

3. The body is an amazing place. Be good to it and it will be good to you and I think you can heal. I went from flat villi (from 30 years of gluten) to perfectly healthy villi in 8 years, maybe even sooner.

It's ok to be sad!! This is a big scary change, but it will be ok. Things will get better, I promise.

HUG!!

kareng Grand Master
kareng
Posted

I used the Google search at the top right corner. Once I spelled vegetarian correctly, lots of past post showed up.

I miss cookies Newbie
I miss cookies
Posted
  • Author

I haven't been sick as long as you but I am in the same boat. I am also a vegetarian and I have no idea what to eat. I can't eat gluten, dairy, or meat. There's not much left. If you don't mind I am going to follow this thread and try some of the suggestions that you receive.

Oh that's so funny because I was just reading your thread, and thinking the very same thing! I'm still eating dairy but I'm paying a heavy price for it :(

I miss cookies Newbie
I miss cookies
Posted
  • Author

1. Ok, Mr/Mrs "I miss cookies," first thing you should do is go out and find some gluten free cookies from liz lovely. They are fantastic, not just "fantastic for being gluten free." Make sure you get the gluten free kind as they make some gluten ones too.

2. I am pretty sure if you want to be a meatless celiac, you can do that just fine, provided that is really all you are not removing from the diet. If you can still have rice, corn, potato, quinoa, as well as dairy, soy, nuts, eggs you can totally do this.

3. The body is an amazing place. Be good to it and it will be good to you and I think you can heal. I went from flat villi (from 30 years of gluten) to perfectly healthy villi in 8 years, maybe even sooner.

It's ok to be sad!! This is a big scary change, but it will be ok. Things will get better, I promise.

HUG!!

Thank you Tictax, that gives me hope, which I'm sorely lacking right now. And thank you for the hug, I needed that too :(

I miss cookies Newbie
I miss cookies
Posted
  • Author

I used the Google search at the top right corner. Once I spelled vegetarian correctly, lots of past post showed up.

Oh! I didn't even see that! Thank you! My name is Karen too. I'm thrilled to know there's a few of us veggie-celiacs on here. :)

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

There's still plenty we can eat. You will have to cook more, though.

Can you tolerate soy? If so there's tofu and tempeh. I've also found miso that wasn't made with gluten grains. Also, check out Indian cooking. There are lots of great vegetarian bean or lentil dishes you can have with rice.

As far as cookies, I don't know whether they're vegetarian but I just got the most awesome container of Udi's snickerdoodles. The Betty Crocker chocolate chip mix is very good too.

Takala Enthusiast
Takala
Posted

Yes, there is hope of having your intestines recover after 53 years of eating gluten, but you have to actually want to recover. Eating gluten, when you are not able to because it triggers a severe intolerance or auto immune reaction, affects the function of your brain, as well. Besides subtle malnutrition, which affects mood, there can be actual brain damage, called "bright spots" or "white matter lesions" see link here https://www.celiac.com/articles/112/1/Brain-White-Matter-Lesions-are-Common-in-Celiac-Disease/Page1.html

If you really are either celiac or gluten intolerant ( a person who really does react to gluten, but who for whatever unknown reason doesn't have a reaction show up on the blood tests) and you want to continue to be a vegetarian, you will just have to do more work and meal planning. If it turns out you are also reacting to soy, which is common with celiac, that is going to make it trickier, and if you are insulin resistant or carbohydrate intolerant, and do better on a low sugar, low grain, higher protein diet, that is going to require more care, and may be very, very difficult. The commercially made, gluten free replacement foods like bread tend to be rice based and high glycemic index, and that just wipes out some of us when we eat very much of it. It is possible to bake gluten free without that stuff.

You would have to plan to eat whatever kinds of grain/seeds you could tolerate, plus nuts, beans/legumes, good fats such as oils from olive, coconut, and avocado, vegetables, and fruits. Any processed foods you ate, you would have to make sure they were "gluten free." I have found that things that cater to the vegan market may tend to not be gluten free, because the manufacturer is assuming the consumer is a bread eater - I've reacted to "organic" "vegan" stuff made of "naturally gluten free ingredients" because we don't have a coherent national standard, but have been okay with some manufactured goods which are made with more care, but the maker doesn't use the gluten free label.

For recipes, you can google search "recipes gluten free vegetarian" and that will pull up blogs with these kinds of recipes, and there are some here in the baking section.

edited to add: you may be able to regain the ability to digest very low lactose or lactose free dairy such as yogurt, sour cream, and aged cheese once you have been gluten free long enough for the villi in the gut lining to heal. There are also more gluten free cheese substitutes available now, such as Daiya. In the meantime, coconut milk has the fat to be hunger- satisfying, and there are also other nut - milks.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.