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Raw Meat Craving


Jordan Carlson

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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.


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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!  

 


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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:

 

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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