What Am I Dealing With?

[CNV2855]

I seem to have a problem that I haven't seen discussed much but is probably a complication of years and years of untreated Celiac disease, even though I've been on the diet recently for a couple years.

I react to protein almost as if my body can't digest it. Gluten is bad and causes the worst reaction but I seem to have some sort of reaction to just about anything with protein although the reactions are different depending on the food.

Gluten causes diarrhea, bloating, autoimmunity/prostatitis flares, massive fatigue and a whole host of really nasty things for about 2+ weeks.

Now other proteins are problematic too. After ingesting anything with protein, whether it be nuts/beef/chicken I experience some pretty crazy fatigue. It's not a normal level of fatigue, but more of something that feels like I'm going to pass out. I can often sleep for hours upon hours after eating a protein heavy meal.

My stools are completely formed when I avoid protein, but when I don't they're completely unformed almost as if my body doesn't know what to do with it and just kicks it out.

I've tried digestive enzymes and they don't help.

I know I need protein but I haven't found anything that I don't react to. Fish/Egg protein will literally make me feel like a zombie for 3-5 days and the fish/seafood will usually make me feel so lightheaded that I'll pass out.

How am I suppose to get protein when it all makes me feel so bad? I can't be the only person with this problem! I'm seeing a gastroenterologist in a few weeks but in the mean time I'd like to explore possibilities.

If it was pancreatic insufficiency (common in Celiacs) then digestive enzymes would help? Could it be enterokinase deficiency or lysinuric protein intolerance?

Is there something with amino acids (without protein) that I can eat to get the nutrients I need until I see my doctor?

Undiagnosed Celiac Disease/Gluten sensitivity for years caused the problem. The damage to my gut allowed food to interplay with my immune system for years and there's no doubt there's quite a bit of damage in there... I just haven't heard of anyone else experiencing this problem with all foods with protein. But it kind of makes sense, because proteins are the allergenic molecules in food.

A 5 ½-year-old boy presented with delayed growth, chronic diarrhea, and hypoproteinemia. Clinical presentation, initial laboratory data, and evaluation of an intestinal biopsy specimen suggested a diagnosis of celiac disease. Symptoms did not resolve on a gluten-free diet. The development of hyperammonemia prompted further studies that led to the diagnosis of lysinuric protein intolerance. Lysinuric protein intolerance, although a rare disorder, should be included in the differential diagnosis of conditions associated with intestinal villous atrophy. ( J Pediatr 1998;132:153-5)

This looks like something I should read into.

[Jenniferxgfx]

There is definitely refractory celiac, but have you tried beans, peas, and lentils too? (didn't see them listed). I'm vegan for ethical reasons, but meat actually made me ill way before I knew I had celiac and went vegetarian for multiple reasons, including angry gut problems after eating meat. People thought it was psychosomatic but it wasn't. Meat's just too much for my particular system, and I know I'm in the minority here for it.

There's also stuff like brown rice or other plant based protein powder, too, you can add to smoothies and stuff for supplemental protein, if you're into that.

I hope you feel better!

[CNV2855]

There is definitely refractory celiac, but have you tried beans, peas, and lentils too? (didn't see them listed). I'm vegan for ethical reasons, but meat actually made me ill way before I knew I had celiac and went vegetarian for multiple reasons, including angry gut problems after eating meat. People thought it was psychosomatic but it wasn't. Meat's just too much for my particular system, and I know I'm in the minority here for it.

There's also stuff like brown rice or other plant based protein powder, too, you can add to smoothies and stuff for supplemental protein, if you're into that.

I hope you feel better!

I have problems with rice and soy as well.

I really think there's something else at work. Refractory Celiac scares me but the gastroinestinal symptoms mostly disappear when I avoid gluten.

[Jenniferxgfx]

I kinda think processed soy is the devil:/ Theres also hemp Protein. Plus stuff like quinoa, served in place of rice. Is that out too?