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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    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

    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
×
×
  • 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.