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

Intolerance To Foods That Contain Protein, Possible Other Intolerances Or Secondary Disorder To Celiac?


Woolygimp

Recommended Posts

Woolygimp Contributor

I've been gluten-free for about a year and a half and while I've shown drastic improvements, such as the remission of DH, I have unfortunately not recovered fully. One of the things I've noticed are secondary food intolerances to things such as nuts, fish, beef, and so forth.

Eating a meal consisting of several foods such as fish would heavily sedate me and literally make me pass out for hours. For the next 36 hours I'd feel like I was in semi-shock, very lightheaded, unable to think, and like I was hit with a tranquilizer. It also felt like it was causing an autoimmune reaction. This reaction occurred to varying degrees with several different foods.

At first I thought it was maybe an allergic reaction to fish, eggs, nuts and so forth but today I had a similar reaction with my chicken heavy meal and I've started to suspect something else. All of these foods are protein heavy. It seems like the foods with more protein such as the fish, eggs, beef, and nuts make me feel much worse than the foods with less protein such a chicken. Now I'm starting to suspect that I can't digest protein, now keep in mind that gluten is a protein.

I have to get to the bottom of this because I'm 23 years old and every time I have one of these reactions, it feels like I'm killing myself. I recover afterwards but it's hard to describe just how bad this makes me feel. It's not your typical "feel tired after a meal" thing, I'm talking about full blown, I couldn't walk across the room without falling, or even keep my eyes open and not pass out. It also interferes with the way my brain works, I feel "dumber" and definitely fogged. I start losing track of words and while not incoherent, I definitely lose literacy.

I've tried digestive aids and they haven't worked. So here I am. Really baffled. I have done searches and finally I came upon this post:

https://www.celiac.com/gluten-free/index.ph...p;mode=threaded

Open Original Shared Link

It states that a protein digestive disorder can happen at any stage of life and is life threatening due to ammonia buildup in the blood. Very worrisome.

The SCD page also has a page that says the protein digestion can be difficult with built up mucus and inflammation.

Open Original Shared Link

Now when I go long stretches without being glutened, I think I can tolerate protein a little bit better. When I am glutened, like I was a couple weeks ago and try to eat protein then I have these really bad reactions, although I'm not sure. I know when I wasn't glutened and was feeling fine, I decided to eat a lot of fish and I had the reaction again and I went from feeling great to absolutely terrible within the space of a couple hours after the meal.

My liver enzymes have traditionally been extremely elevated but did come down following the gluten-free diet, although I think they may need to be retested and maybe possibly ammonia levels?

So let's say my problem is protein and not an allergic reaction to these foods, can I even survive without eating it? What do I do? Do I have to give up meats? What would your advice be? Follow an elimination diet?

I'm so lost at this point and just need help and advice!


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



Celiac.com Sponsor (A8-M):



haleym Contributor

Wow, that sounds really scary for you. I did also read somewhere that lots of protein in the diet is not the best thing for autoimmune disorderly-people :).

What I would do is arm yourself with the research you have done, and talk to your doctor! What you are experiencing is really not normal, and you deserve to know whats going on!

Good luck!

YoloGx Rookie

It may be that you are low in an ability to metabolize vitamin B1 which is needed for both protein and carbohydrate digestion and full utilization. With this difficulty it gives one beri beri like symptoms--and thus the ammonia and liver problems etc. etc.! I have this problem--and finally counteracted it by taking co-enzyme B complex from Country Life on an empty stomach either at night or early in the morning. I take 2 capsules since that seems to be what I need. Its a relatively cheap fix. They don't seem to give B-1 shots very many places. I found the sublingual B vitamins difficult due to the sorbitol. Taking a B-complex I am told is better than taking the individual vitamin since that way the B's are balanced. I noticed a big difference almost immediately. After 2 weeks my heart stopped racing, I no longer had weird anxiety attacks over nothing etc. and my muscles and joints started to feel a lot better, much of the wierd aching and tingling and jerking in my feet went away, I slept better plus I stopped getting sick at the drop of a hat.

You may also profit by taking pancreatin, a digestive enzyme taken with meals that helps break down proteins in the intestines. I would also suggest not eating a large protein meal all at once and instead have smaller meals. General enzymes that have bromelain and papain in them also seem to be of help.

Taking dandelion root and yellow dock on occasion or even fairly regularly (say 3 to 4 days a week) can also help take the load off your liver and help out your intestines as well to detox and function better. Don't take however if you have chronic D!

Am finding now that by taking olive leaf tea or extract its also counteracting the build up of candida and fungus and who knows what microbes and viruses etc. built up after a life time of the above imbalance--and thus am finally starting to get more energy.

Hope this helps!

Bea

tarnalberry Community Regular

Assuming your vitamin levels are good (which they may not be, and it's worth trying to get those tested), you may want to experiment with simplifying you food so that there are only a few ingredients, and you don't eat a very big meal. (You may have to eat many small ones, which I know is a pain in the butt, but might help.)

Does this tend to occur more often with big meals than small ones? The body may be having difficulty with a big, full meal.

Try to document your day - meals, activities, and symptoms - VERY carefully for about two weeks, and then see if you can go in and talk to your doctor. Don't say "I'm scared something horrible is wrong; I think I have a protein intolerance." Do hand him/her your notes (include a summary) and say "I don't think this is normal. Can you take a look at what's been happening and see if you can help me feel like I can function again? I've got two weeks of data for you."

ravenwoodglass Mentor

To add to the great advice you have already gotten, have they checked your blood sugar recently? Just to be on the safe side I would ask the doctor to do a fasting blood sugar and an A1C in additon to checking your vitamin levels.

The symptoms you are describing also for me would be glutening symptoms. Are you being really careful about CC issues etc? When you eat these meals are they meals you have cooked at home or are they at a restaurant or freinds or relatives homes who are not gluten free?

tarnalberry Community Regular
To add to the great advice you have already gotten, have they checked your blood sugar recently? Just to be on the safe side I would ask the doctor to do a fasting blood sugar and an A1C in additon to checking your vitamin levels.

That's a really good point. You might also discuss the possibility of reactive hypoglycemia (which a fasting blood sugar, and just about any test that isn't measuring blood sugar over time (many hours) when challenged with sugar, won't be able to catch). (In theory, a personal blood glucose monitor can't "diagnose" it either, but you can chart a profile of your reaction to various things fairly easily to get an idea of what your body is doing. Different curves (blood sugar plotted against time) tend to imply different things about non-diabetic hypoglycemia/hyperglycemia and diabetes.)

chatycady Explorer

Are your B-12 levels okay?


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



Celiac.com Sponsor (A8-M):



Woolygimp Contributor
That's a really good point. You might also discuss the possibility of reactive hypoglycemia (which a fasting blood sugar, and just about any test that isn't measuring blood sugar over time (many hours) when challenged with sugar, won't be able to catch). (In theory, a personal blood glucose monitor can't "diagnose" it either, but you can chart a profile of your reaction to various things fairly easily to get an idea of what your body is doing. Different curves (blood sugar plotted against time) tend to imply different things about non-diabetic hypoglycemia/hyperglycemia and diabetes.)

I keep checking my blood sugar over and over to make sure it's not a problem. Fasting, it hovers around ~100, and I've never seen it below 80 ever, or over 180 even after a meal.

Woolygimp Contributor
Are your B-12 levels okay?

I don't know.

VioletBlue Contributor

Have you been to a doctor and explained what is going on? I think it would be a really good idea to have some basic blood tests run. What you are describing sounds similar to what my father went through everytime he ate a meal with protein. He suffered from liver damage which did eventually kill him. When the liver is malfunctioning it has trouble processing protein which throws off the blood gases. That can affect the brain. It can actually lead to a coma! Liver damage can happen as a result of any strain of Hepatitis including what is known as auto immune hepatitis. Auto immune hep is not unheard of in people with Celiacs. You need to find out what is going on and a doctor would be a really wise idea right now.

I've been gluten-free for about a year and a half and while I've shown drastic improvements, such as the remission of DH, I have unfortunately not recovered fully. One of the things I've noticed are secondary food intolerances to things such as nuts, fish, beef, and so forth.

Eating a meal consisting of several foods such as fish would heavily sedate me and literally make me pass out for hours. For the next 36 hours I'd feel like I was in semi-shock, very lightheaded, unable to think, and like I was hit with a tranquilizer. It also felt like it was causing an autoimmune reaction. This reaction occurred to varying degrees with several different foods.

At first I thought it was maybe an allergic reaction to fish, eggs, nuts and so forth but today I had a similar reaction with my chicken heavy meal and I've started to suspect something else. All of these foods are protein heavy. It seems like the foods with more protein such as the fish, eggs, beef, and nuts make me feel much worse than the foods with less protein such a chicken. Now I'm starting to suspect that I can't digest protein, now keep in mind that gluten is a protein.

I have to get to the bottom of this because I'm 23 years old and every time I have one of these reactions, it feels like I'm killing myself. I recover afterwards but it's hard to describe just how bad this makes me feel. It's not your typical "feel tired after a meal" thing, I'm talking about full blown, I couldn't walk across the room without falling, or even keep my eyes open and not pass out. It also interferes with the way my brain works, I feel "dumber" and definitely fogged. I start losing track of words and while not incoherent, I definitely lose literacy.

I've tried digestive aids and they haven't worked. So here I am. Really baffled. I have done searches and finally I came upon this post:

https://www.celiac.com/gluten-free/index.ph...p;mode=threaded

Open Original Shared Link

It states that a protein digestive disorder can happen at any stage of life and is life threatening due to ammonia buildup in the blood. Very worrisome.

The SCD page also has a page that says the protein digestion can be difficult with built up mucus and inflammation.

<a href="Open Original Shared Link disease=1&hl=en&ct=clnk&gl=us&client=firefox-a" target="external ugc nofollow">Open Original Shared Link

Now when I go long stretches without being glutened, I think I can tolerate protein a little bit better. When I am glutened, like I was a couple weeks ago and try to eat protein then I have these really bad reactions, although I'm not sure. I know when I wasn't glutened and was feeling fine, I decided to eat a lot of fish and I had the reaction again and I went from feeling great to absolutely terrible within the space of a couple hours after the meal.

My liver enzymes have traditionally been extremely elevated but did come down following the gluten-free diet, although I think they may need to be retested and maybe possibly ammonia levels?

So let's say my problem is protein and not an allergic reaction to these foods, can I even survive without eating it? What do I do? Do I have to give up meats? What would your advice be? Follow an elimination diet?

I'm so lost at this point and just need help and advice!

  • 3 weeks later...
Woolygimp Contributor

Just wanted to give everyone an update. I only have this negative reaction for a couple weeks following a glutening. Prior to making this post I was glutened twice by the Yogourmet Yogurt starter that is often used for the SCD legal yogurt and was feeling quite horrible. The protein in the meats only worsened things, and felt like they were killing me.

Now that I've somewhat gotten over my glutening, I can again tolerate these foods without a problem. Well everything except the fish/almonds.

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. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    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

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.