What Can I Eat?

[CNV2855]

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I'm almost exactly like the lady mentioned in this journal, who was suffering from shock and cyanosis from certain proteins. I had a trip to the ER a few days ago after eating a couple of bananas, and I really didn't think I'd make it. My skin was turning purple and I couldn't breath.

Anyway, I'm KNOW I'm allergic to seafood, beef, chicken, coconut, nuts with the beef being a definite reaction although mild compared to the others. I'm not sure about rice, pork, turkey but I feel that I may be to those as well.

I really don't know what the hell to eat... I feel great when I don't eat, but I start feeling extremely horrible (fatigue, confusion, lethargy, breathlessness, difficulty breathing) when I eat some of these things. I can tolerate beef a lot better than I can tolerate seafood but it feels like I'm allergic to every protein out there. If I go without eating them, I feel absolutely wonderful...

Any ideas... I have to eat something, right?

[pricklypear1971]

Wow. I don't know what to say...,

Are you ok with beans? That could be a protein source for you. Peas?

[mushroom]

How are you with eggs and dairy?

[CNV2855]

How are you with eggs and dairy?

Almost definitely have a problem with dairy, and I haven't eaten eggs in about a year. I might try them...

And I'm not sure about beans.

[mommida]

There is an amino acid formula. The drink boxes targeted to kids is called Splash. Why these are flavored with artificial sugar is something I will never understand. It is really hard to get enough calories and most at this stage will end up on a feeding tube. (So yes there still options when eating is soo difficult.) It is time to start looking into the foods list least likely to cause a reaction. Do a search of "non-food" items. These are things like dum- dum suckers and cotton candy.

I do hope you are working with a gastroenterologist. If there is an underlying condition causing damage, it needs to be discovered. It is possible if that damage gets healed you may be able to tolerate more foods.

In my daughter's case of Eosinophilic Esophagitus we had to put her on an elimination diet of all the usual suspects (the top 8) and peas, on top of the gluten free diet she had been on since she was 17 months old. Since eosinophils stay active for 12 days once activated it took a long time to get her just feeling better to attempt a trial. We know have her "allergen" list down to... gluten, eggs, fish, shellfish, and peas. She was vommitting up to five times a day and didn't seem like she was going to tolerate any food. So take heart all is not lost but you have some serious diet changes you need to make.

Some of the brands that really help are Enjoy Life and Ener-G foods.

[CNV2855]

There is an amino acid formula. The drink boxes targeted to kids is called Splash. Why these are flavored with artificial sugar is something I will never understand. It is really hard to get enough calories and most at this stage will end up on a feeding tube. (So yes there still options when eating is soo difficult.) It is time to start looking into the foods list least likely to cause a reaction. Do a search of "non-food" items. These are things like dum- dum suckers and cotton candy.

I do hope you are working with a gastroenterologist. If there is an underlying condition causing damage, it needs to be discovered. It is possible if that damage gets healed you may be able to tolerate more foods.

In my daughter's case of Eosinophilic Esophagitus we had to put her on an elimination diet of all the usual suspects (the top 8) and peas, on top of the gluten free diet she had been on since she was 17 months old. Since eosinophils stay active for 12 days once activated it took a long time to get her just feeling better to attempt a trial. We know have her "allergen" list down to... gluten, eggs, fish, shellfish, and peas. She was vommitting up to five times a day and didn't seem like she was going to tolerate any food. So take heart all is not lost but you have some serious diet changes you need to make.

Some of the brands that really help are Enjoy Life and Ener-G foods.

Thank you SO much for this post.

With me, I have days where I don't feel like I'm going to survive (not normal for a 25 year old male in otherwise good condition), and other days where I feel like I can run a marathon. I've known for a long time it was food, but since everything I was eating was causing this reaction I really couldn't get well for long enough to really understand just how much food proteins were affecting me. I just recently figured out I was allergic to beef - I stopped eating until I started feeling good again and then ate some beef alone and bam, it hit me.

I had elevated eosinophils in one lab (they're back down now) and I REALLY think I'm suffering from SIBO and that's what is causing this. I am working with a gastroenterologist but he advised me to start a food journal and really pay attention to the foods that are causing me problems. I go in back to see him Monday.

I'm going to check out that amino acid formula.

[Di2011]

You really need some GOOD medical attention! Get on the Doctors forum and ask about proven / trusted experts in your area. Be sure to put the area/city in your subject so you get locals reading your topic.

Sounds like ER (at least medical supervised) is a good place for you to test food intake

[pricklypear1971]

What about lamb????

[mommida]

Did you research what eosinophils are are how damaging they are to normal, healthy tissue? That is 12 days (nearly 2 weeks) of damage happening in your GI track. First thing is to try and stop any more damage from happening and heal. In EoEs in the Esophagus there is a modified Flovent inhaler to put steroids in the esophagus.

Keep the food journal to keep track of the foods that you are eating, but really avoid the top 8 (wheat, eggs, fish, shellfish, soy, dairy (all the way down to casein), nuts, and tree nuts.) I was told that for EoEs peas are highly reactive. (Not that hard to aavoid but some gluten free foods like Kinnicknick use pea starch for texture in products.

[CNV2855]

Did you research what eosinophils are are how damaging they are to normal, healthy tissue? That is 12 days (nearly 2 weeks) of damage happening in your GI track. First thing is to try and stop any more damage from happening and heal. In EoEs in the Esophagus there is a modified Flovent inhaler to put steroids in the esophagus.

Keep the food journal to keep track of the foods that you are eating, but really avoid the top 8 (wheat, eggs, fish, shellfish, soy, dairy (all the way down to casein), nuts, and tree nuts.) I was told that for EoEs peas are highly reactive. (Not that hard to aavoid but some gluten free foods like Kinnicknick use pea starch for texture in products.

Well my esophinils were only slightly elevated, I think at 7 and the normal parameter is 0-5. And they've come back down.

I really, really think this is a possibility and I've seen it before, but I noticed how rare it is and sort of disregard it. Honestly though, it sounds a lot like what I'm going through.

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I don't know. I still have the DH rash on my back, and I had elevated ALT/AST liver enzymes that normalized on the gluten free diet so I'm almost positive that I have celiac disease. I still think I'm going to get that checked out to be safe because the mental confusion, lethargy, and fatigue especially after high protein meals sounds just like me. I feel a lot better on a diet comprised of fats and sugars. My family is of Finnish heritage; I mean I guess it's possible to have Celiac disease and this... but how unlucky would you have to be?

Chances are I'm just going through a complication of celiac disease, like pancreatitis or SIBO, but I can't help but notice the similarities to that case report.

[mommida]

That is very interesting, as we are also of Finnish descent. Daughter tested positive for DQ2 and DQ8 genes associated with Celiac. Diagnosed probable celiac when she was 17 months old. Diagnosed with Eosinophilic Esophagitus when she was 6. She is 9. She just had another EGD last Wed. We are calling for the results of EoE count tomorrow. There was some of the creamy white spots that look like eosinphils. There is furrowing and inflammation. It is not as bad as when she was first diagnosed, but not clear and healthy like in the past during the freezing cold of winter. (Following the pattern of airborn allergen active in late summer early fall months. She is hospitalized on average once a year for dehydration. She eats salad all the time. I was actually very concerned that she was developing secondary Addison's Disease.

[T.H.]

I'm KNOW I'm allergic to seafood, beef, chicken, coconut, nuts with the beef being a definite reaction although mild compared to the others. I'm not sure about rice, pork, turkey but I feel that I may be to those as well.

Did you test positive to these on an allergy test, or did they test positive during a food trial?

Are you allergic to any antibiotics, or to corn, or have any issues with bleach? Just wondering if it's possible you could be reacting to some of the anti-bacterial agents used on the various meats (often diluted bleach and/or corn cc'd citric acid), or antibiotic residue left in some meats. Probably not, I know, but thought I'd put it out there in case it might increase your food pool!

You might want to start looking at exotic animal protein. There are some places on-line that sell various reptile meats, for example. If birds, fish, and mammals are looking bad, maybe reptiles might be an option. Or another one - and this one you get to go out on a limb for - is bugs. Bugs are pretty commonly eaten in a lot of places around the world, so it's not unusual. There's even a bug cookbook on amazon, last I looked. Some common bugs are edible, a good protein source, and you can even raise them yourself...once you get over the gross out factor, LOL.]

If you go for bugs, I'd avoid meal worms for a while. They actually seem to cause severe allergic reactions in people more than many other kinds of bugs, so probably not the best for you, where you're at now.

[GFinDC]

Well my esophinils were only slightly elevated, I think at 7 and the normal parameter is 0-5. And they've come back down.

I really, really think this is a possibility and I've seen it before, but I noticed how rare it is and sort of disregard it. Honestly though, it sounds a lot like what I'm going through.

Open Original Shared Link

Open Original Shared Link

I don't know. I still have the DH rash on my back, and I had elevated ALT/AST liver enzymes that normalized on the gluten free diet so I'm almost positive that I have celiac disease. I still think I'm going to get that checked out to be safe because the mental confusion, lethargy, and fatigue especially after high protein meals sounds just like me. I feel a lot better on a diet comprised of fats and sugars. My family is of Finnish heritage; I mean I guess it's possible to have Celiac disease and this... but how unlucky would you have to be?

Chances are I'm just going through a complication of celiac disease, like pancreatitis or SIBO, but I can't help but notice the similarities to that case report.

wiki info:

Lysinuric protein intolerance (LPI), also called hyperdibasic aminoaciduria type 2 or familial protein intolerance, is an autosomal recessive[1] metabolic disorder affecting amino acid transport.

About 100 patients have been reported, almost half of them of Finnish origin.

---

Diagnosis

The diagnosis is based on the biochemical findings (increased concentrations of lysine, arginine and ornithine in urine and low concentrations of these amino acids in plasma, elevation of urinary orotic acid excretion after protein-rich meals, and inappropriately high concentrations of serum ferritin and lactate dehydrogenase isoenzymes) and the screening of known mutations of the causative gene from a DNA sample.

/end Wiki info

Well, it sounds like the LPI is some thing that can be tested for easily?

Your symptoms are serious (turning blue) so it makes sense to check other possibilities.