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

Raw Meat Craving


Jordan Carlson

Recommended Posts

Jordan Carlson Explorer

Hello everyone! So I am on week 4 being 100% gluten free again. Long story short, I was back eating gluten for 3 weeks prior to my endoscopy to get the celiac diagnosis.  Now that I have been gluten free for 4 weeks, I have a very strong craving for specifically raw meat haha (raw salmon, raw steak....etc).  When I was eating gluten, I craved greasy and sugary foods.  Now, I have zero interest in that and crave raw meat.  This happened the first time I went gluten free.  But this time around I am much more cautious and have my own toaster, cooking pan and everything like that.  It has made a huge difference and I am starting to feel better than ever! The raw meat craving seems to be much stronger though than the first time around.  Its so strong that it makes me want to start a ketogenic diet.  But I know my carbs are important to me as I am a pretty active guy.  And I also tend to have a tough time digesting if I eat too much meat due to the fat.  Just wondering if anyone else experienced this.  And if so, how did you manage it? Not complaining about it at all, just find it odd that a raw steak looks so appetizing lol.


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

That is an interesting craving, and likely may be due to a nutritional deficiency. Are you taking a good high potent vitamin/mineral supplement? Most people with celiac disease need to take them, especially in the 1-2 years after diagnosis.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

 

 

 

Jordan Carlson Explorer

Thanks for the reply @Scott Adams! I actually just started a extra strength multivitamin yesterday! I assumed the craving had something to do with a deficiency of some sort. Was thinking maybe even a protein deficiency since I am an active person. I will give the multi vitamin some time to work!

Scott Adams Grand Master

I am thinking a B12 deficiency, which is quite common among those with celiac disease. To absorb B12 properly it is best to take the other B vitamins with it as well, so the multivitamin approach is a good idea.

  • 2 months later...
knitty kitty Grand Master

@Jordan Carlson,

How are you doing now? 

Your post slipped by, but I had to let you know you weren't alone.  I've had cravings for raw meat my whole life.  It's due to being low or deficient B vitamins, specifically Thiamine.  Meat is a great source of B vitamins.  Cooking meat destroys some of the vitamins, so a craving for raw or rare meat shows up.  

Thiamine and Niacin make digestive enzymes that will help you digest fats.  Thiamine will help improve gastroparesis, anxiety, vertigo, and heart palpitations.  Niacin will help Dermatitis Herpetiformis.  I get dermatitis herpetiformis blisters on the palms of my hands, too.

Really active people (especially if outdoors in hot weather) need additional Thiamine.  If a high carbohydrate diet is eaten, additional Thiamine is needed, too. 

I take Benfotiamine, a form of Thiamine that helps heal the digestive tract.  I also supplement magnesium because Thiamine and magnesium work together.  

Hope you can update us on how you're doing.  

Jordan Carlson Explorer

Hey there @knitty kitty!

Thanks for checking in.

Things are not really going as planned for myself unfortunately. As much as I feel better than I did while eating gluten, I still seem to be reacting to trace amounts of gluten in gluten free foods. I constantly break out in rashes or hives after eating. My dermatitis is constantly flaring up. I take every precaution possible to be as gluten free as I possibly can and have simplified my diet as much as I possibly can but still cant get past this point in my recovery. If this is the case, I believe it would be considered non-responsive Celiac Disease or Refractory Celiac Disease. The only time I have ate gluten purposely in the last year was for the 3 weeks leading up to my endoscopy for diagnosis. Aside from that, the last year has been a constant disappointing effort to be gluten free with the same result of getting stuck at this point. I have a appointment with my doctor next week to discuss some treatment options and what the next steps are in trying to get my body to push past this point.
 

I will keep you posted! 

knitty kitty Grand Master

@Jordan Carlson,

Sorry to hear you're having a bumpy journey right now.  I've been there.  I thought I was never going to stop having rashes and dermatitis herpetiformis breakouts and hives, oh, my!

I went on a low histamine Autoimmune Protocol Diet (AIP diet).  It gave my digestive system time to heal.  After I felt better, I could add things back into my diet without reactions.  

In Celiac Disease, we make lots of histamine as part of the autoimmune response.  There's also histamine in certain types of food.  Lowering histamine levels will help you feel better.  Foods high in histamine are shellfish, crustaceans, fermented foods like pickles and sauerkraut, canned foods, processed meats and smoked meats like bacon and ham, and aged cheeses.  Grains and legumes can also be high in histamine, plus they contain hard to digest Lectins, so they go, too.  Cutting out corn made a big improvement.  Some Celiacs react to corn as though it were gluten.  

Dairy can be problematic, so it goes.  Some Celiacs have lactose intolerance because their damaged villi cannot make Lactase, the enzyme that digests lactose, the carbohydrate in dairy, while some Celiacs react to Casein, the protein in dairy that resembles gluten.  Dairy is high in iodine, which makes dermatitis herpetiformis flare up badly.  Eggs are high in Iodine, too.  I even switched to pink Himalayan salt, instead of iodized salt.  Avoid processed gluten free facsimile foods like cookies and breads because they have lots of additives that can cause high histamine, like carrageenan and corn.  

Yes, it's a lot.  Basically veggies and meat and some fruit.  But the AIP Paleo diet really does help heal the intestines.  My digestive tract felt like it was on vacation!   I'd throw meat and veggies in a crock pot and had a vacation from cooking, too.  Think easy to digest, simple meals.  You would feed a sickly kitten differently than an adult cat, so baby your tummy, too!

Take your vitamins!  It's difficult to absorb nutrients from our food when everything is so inflamed.  Supplementing with essential vitamins helps our absorption while healing.  Niacin B3, the kind that flushes (nicotinic acid -not the same as nicotine in cigarettes, don't worry!) REALLY helps with the dermatitis herpetiformis flares.  Niacin and Thiamine make digestive enzymes so you can digest fats.  Add in healthy Omega Three fats, olive oil, flaxseed oil, avocado oil, coconut oil.  Vitamin D helps lower inflammation and regulates the immune system.  Thiamine helps mast cells not to release histamine at the slightest provocation.  Benfotiamine, a form of Thiamine B1, has been shown to promote intestinal healing.  Pyridoxine B6, Riboflavin B2, Vitamin C and Vitamin A help heal the digestive tract as well as the skin.  Our outside skin is continuous with our digestive tract.  When my outside skin is having breakouts and hives, I know my insides are unhappy, too.  

Talk to your doctor and nutritionist about supplementing.  Blood tests are NOT accurate measurements of B vitamin deficiencies.  These tests measure what's in the bloodstream, not what is inside cells where vitamins are used.  Supplementing with essential vitamins and minerals made a big difference with me.  (My blog has more of my bumpy journey.)

Let me know if you have more questions.  You can get through this!  

 


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



Celiac.com Sponsor (A8-M):



Jordan Carlson Explorer

Thanks for the info @knitty kitty!

I really appreciate when people recommend things for me to try, it helps a lot!

I will run this stuff by my doctor at my next appointment next week.

It is also good to know I am not alone with the continued reactions though.

It has been pretty difficult for me and has taken a bit of a toll on my mental health.

Trying so hard and dedicating so much time to resolve this issue just to feel like I am running around in circles.

But i'm glad to get some insight from people who have experienced the same thing.

My family and friends just keep saying i'm crazy andthat i'm a hypochondriac.

But the only thing that has gotten me this far in my journey and this close to figuring it out is not listening to them and believing in myself.

Scott Adams Grand Master

This article may also be helpful as it offers various ways to relieve the itch:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - julie falco replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Schar's products contain wheat!

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

    3. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,603
    • Most Online (within 30 mins)
      7,748

    Dale S
    Newest Member
    Dale S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • julie falco
      thank you that is good to know that it is safe for celiac people
    • Jmartes71
      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
×
×
  • 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.