Just Feel Like Giving Up

[lieze]

Last night I was trying to eat...all of this allergy stuff is overwhelming and really hard to grasp.

Like I'm seeing foods are safe on one list and then another list will contradict it.

So I tried a bite of bread my mom made me...had eaten it before. Well I swallowed one piece and it felt like something in my left lung up high got paralyzed.

I felt bad and like I could keel over and had to mechanically breathe for at least 20 minutes.

I finally belched and got relief.

Then I was working on eating a boiled egg, took a bite, felt too wired and then it felt as if my jaw was paralyzed.

I felt it stiffen like I had lock jaw...it was so stiff I didn't know if I'd be able to move it to talk.

It felt paralyzed for another 20-30 minutes.

The thing that scares me is all the life saving meds to treat anaphylaxis contain sulfite the thing I'm allergic too so I could go into respiratory failure just from the meds they would use to save me.

This is terrifying.

I don't know if I am just so afraid to eat even my supposed safe foods I'm having anxiety related reactions...I don't know.

Typically what I do if I get any negative effect while eating is go dump the food...give myself a small break and try something else.

It is consuming my life and I can't imagine a time when I won't be either searching for safe food, preparing it, or eating....I don't have much time for anything else.

[sue1234]

I don't have any answers, wish I did! I was just thinking, do you think maybe eating baby food out of baby food jars? Just some fruits and veggies that you think are safe? I don't know for sure, but am thinking they may not have additives. Just a thought. Are you allergic to all nuts? If not, maybe buy some nuts in their shell, and crack them open to eat for protein.

[Sarah4444]

I'm so sorry to hear that you are having so much difficulty. It makes me think that maybe oral sodium cromoglycate might help you. It is an MCAD med, but apparently has been used for people with food allergies for a long time and is considered a pretty safe drug. I dissolve my dose in hot water and drink it 20 min before eating and it helps me a lot. The only problem is that it is a very expensive drug (mine costs about $400/month I think, and that's up here in Canada), and I don't know if you have a drug plan.

Another idea would be to try Benedryl about half and hour before eating and see if it helps a bit. A lot of people with mast cell disorders have all kinds of trouble eating - some even end up with feeding tubes - so don't blame too much of this on anxiety. However I agree that being anxious makes everything worse, even the physical reactions, so if you are able to tackle the physical and anxiety parts of this at the same time you might be most successful. Have you tried reading the book called "Full Catastrophe Living" by Jon Kabat Zinn? He has some techniques that you might be able to use to calm yourself and try to sort things out a bit. Hang in there.

[lieze]

The only nuts I'm not allergic to are cashews.

I've been afraid to eat those because they are often made in peanut oil.

I feel really bad because my mom did buy me some cashew butter and it does have a different oil but I still feel afraid at this point to try it.

Not sure what I'd put it on either-regular bread is out.

[potsgirl]

Lieze,

A personal question...Did you ever have an eating disorder when you were younger? Food issues? The reason I'm asking is that I did, and now I have so many problems with food and keeping weight on. I have to wonder if there might be a connection between the two. Please don't be offended, it's just a personal theory of mine (for me) and am curious if others might also have had this issue.

Ciao,

Jana

[lieze]

No problem with eating but I had allergies and I was always way too thin and my mom took me to the doctor multiple times to ask why I did not gain weight and he told her not to worry about it.

I am very discouraged.

Had a bad episode tonight, I'm almost certain it was food related.

I don't really feel safe eating anything.

I just don't know what to do,

I'm very depressed.

[sisblostg]

I feel the same way but for a different reason. I don't have any allergies(except pineapples) but I feel like there is nothing left to eat or I'm afriad to eat because of the reactions most food give me.

I went to a nutritionist after I had a problem eating fat after I had my gallbaddler out. I was on low salt because of a kidney problem, and she put me on low fat, so I was like what is left all sugar! I finally found a diet that was working. Then the POTS dr says I need more salt(the kidney dr is mad about it). Then my stomach emtying issues began. One dr said high fiber , then 2 said low fiber or said liquid. I have no clue what I am suppose to eat somedays. I know the less I eat the better I feel with POTS but I am so hungry. It is also hard with my husband because of his crazy hours because I dont drive he eats only 1 meal a day a big late afternoon dinner. He feel bad eating in front of me, and if I eat a big meal I feel bad. It is weird how food issues can alienate you socially. I live in a retirment area. I had lots of neighbors that would want to eat out and I just can't do it anymore. I have tried to explain my condition but I feel like a lost alot of neighborhood friends because I can't go out to eat.

Is there anything you are doing for easter you can focus on right now? I'm feeling pretty bad physically. I haven't eaten anything today, just been on fluids, but I'm a stuffing over 1000 eggs to play easter bunny tonight. It is one of the few things I feel like I can do. Our area has a high unemployement rate (over 25%) so my husband and I drive around hiding eggs all over town:)

[samannran]

I'm so sorry you are dealing with this. As a gastroparesis sufferer, I understand viewing food as the enemy. It is very hard to deal with. I hope you find some foods that you can tolerate. It is hard not to be depressed. Please seek out help for your depression and understand that it is natural to feel that way when suffering from illness. Hope you feel better soon!

[tinkerbella]

Lieze,

I feel bad that you worry so much. I too have much difficulty with food and won't get into all the details here. But, Sarah gave good advice. I take the gastrocrom and before that I was self medicating myself with bennydrly and didn't even realize it. I now find that breakfast shakes are best for the morning and go down nice and easy and loaded with energy. My pots neuro told me that most of her patients start the day with those. I also have found that small lean cuisine market meals in a bag that you steam and I add dried berries and walnuts sea salt, but I eat one of those a day. Then I supplement with slim fast drinks (they are just the right size for my belly ) when needed and at lunch with fruit and salad, Then before bed have another or may have Keifer. I usually have Keifer once a day as a pro biotic. I also drink bullion throughout the day. I would almost rather drink my meals than eat since all my dx in 07 and I have gone down hill..and I don't mean skiing.

It is really important to remember that there is, "nothing to Fear, but Fear it's self." We are all here for you. You talked about being allergic to the meds that they have to save you with. I am also, but my doctor said that they would weight out the situation treat and treat again and not to worry. I adore my doctor, I trust her word, I have had to use the drugs and I'm still here and life is too short to worry Lieze. Try to take all these wonderful suggestions from people here who care for you and see what you can do different today. Right now I'm going to say a prayer for you to stop suffering and worrying so you can take in the beauty of this weekend.

We are all so blessed to be able to come here and share information with each other.

x's

Bellamia ~

[lieze]

Thankyou everybody.

I have not been able to find a liquid meal yet that is corn free.

I think once I do I'll feel a bit better.

[skiberthoud]

Lieze, I believe that Spirutein does not contain corn. It's made by Nature's Plus. You can get it online or in a health food store. It's a high protein shake. Perhaps it's an option for you.

[sue1234]

Yea, I think trying the Spirutein that Tablet mentioned is worth a try. I was thinking earlier that you probably should be getting in some protein. All your hormones and neurotransmitters depend on having protein in the body to, I believe, be carried around and work.

[lieze]

I so appreciate the suggestion.

It has pea protein and I'm also allergic to peas.

I'm not going to give up searching even if I start to do okay on food-just because I might need it sometime.

The only thing I have found so far in a liquid is ready to feed allimentum baby formula is supposed to be corn free.

One of the dietitians I spoke to is supposed to be trying to obtain a liquid meal replacement for me through her representative.

I tried a whey protein powder that I had to order off the Internet and I had a bad reaction to it.

There wasn't even anything listed that I should have reacted to. I was pretty bummed.

[Friedbrain]

Lieze,

{hugs} You are always so helpful, so I'm sorry to hear you're feeling so overwhelmed. I'm going to share some thoughts I had while reading your post, as a different perspective, not to say that you're on the wrong track. 'k?

I've experienced many of the same symptoms that you mention, and it's quite possible that what mine are due to are unknown allergies, too. However, I've been looking at different possible explanations, interestingly enough. So here's what I thought they were due to, and why.

First, I've had stabbing pain in my chest that I thought initially was cardiac, but I experienced them while on the holter monitor and the cardio said they weren't. Sooo, a short while after that, I noticed the pain occurred after taking my pills, like maybe they were getting lodged. Around that time, I was having terrible problems burping. Sometimes, I even noticed the pain with swallowing saliva. (This was an intense few days of problems). Finally, one night, I got meat stuck midway down my esophagus and knew there was a problem (and yes, when it did get stuck, I initially panicked only to realize I could still breath, and I had to make myself breath with the food still there-very strange!). The FP did immediate testing to rule out a hole (if there was a hole, food could leak out midway and I'd die), then sent me to a GI. The guy wanted to scope me out. I made the appt but got better. It's not the first time I've had swallowing problems, as I had them around the time my head blew up. So I'm thinking that the swallowing (higher up in the process) and chest pain (which appears to be a swallowing problem further down in the esophagus, I'm thinking now) are probably neurological (which could be autonomic? Still looking into this)

My jaw also gets paralyzed, or "stuck". Don't know if it's the same thing, but sometimes it will not open more than an inch or two, in fact all night tonight! It comes and goes, but when it happens, I can't eat or I have to push food in through the little opening. I don't know why it happens, although I'm researching the possibility it's also a cranial nerve thing (trigeminal?) It happened before I ate, as I was about to eat, so I don't think it was food-caused.

On a sidenote, the face-swelling that I experienced that I thought may have been food-related allergy......I'm wondering about. I just saw that swelling of the facial nerve can result in swelling above the eyes, in the cheeks and around the mouth, *exactly* like my worst experience (I've had milder versions that only affected above my eyes or around my mouth).

I don't know what I make of all this, except that I suspect my cranial nerves are not the happiest campers. And it's not like I'm going out on a limb here-I've had severe sixth nerve palsy with mild involvement of other cranial nerves (when my head blew up 8 ys ago). WHY is my important question. The elephant again. What's its name? I can label lots of limbs but don't know the elephant's name

Anyway, to summarize, I *think* I maybe am experiencing some of the same symptoms, but am looking at them differently. That's NOT to say what you're experiencing is not caused by food allergies, but just food for thought (is that an ok pun?)

[lieze]

Have you heard of eosinophils esophagus?

I had never heard of it but it is related to allergies and food can get stuck....

The reason I'm leaning towards allergies is my stomach was in such a mess I couldn't put any food in at all without having cardiac symptoms.

I think the corn was having an affect similar to gluten in celiac disease. Keeping my stomach irritated and a mess to where I was having difficulty with even small portions.

That all seems to be improving with abstaining from the corn, it's just a very high maintenance diet and I don't have it perfected yet.

With the sulfite allergy I have to go all organic, and avoid foods with naturally high occurring sulfates.

Interesting there are others reporting how sick they've been with the corn allergy and periods of bp getting low and heart palpitations.

So there may still be some freaky sensations I get from time to time but I'm hoping to improve my overall nutrition and health by following a corn free, pea free, peanut free, sesame free sulfite free diet....it has just been really tough because I was basically already malnourished before having to eliminate the ensure and that really put me in a scare.

I am today feeling a little energy in my core-thank God.

The foods I am eating are slowly starting to fill in that deficit and I have to just keep on eating and trying to add more foods to my repertoire.

I really want to try lentils and get some vitamins on board as I can.

Baby steps-I just wish it didn't have to get so scary.

I beefed up just enough energy to make it to the allergy appt and then after discontinuing the ensure went back to not tolerating being up at all due to extreme weakness related to my nutrition.

I hope I have not damaged my body in the process.

It was never my intention.

This whole health predicament we are all in is so tough.

We want so hard to do the right things not just for ourselves but our families....I think most of u's would stand on our heads all day if we thought it would make a difference.

Thank you for reaching out...one day at a time.

So I need to do this just to rule it out as a possible cause of some of my symptoms.

I feel much better off the corn-but I miss food so much.

I'd give anything for a cold Pepsi.

And I can't even do the throw back due to the caramel color and citric acid.

[mwise]

Hi Lieze,

Have you tried Stonyfield Products & Smoothies? I drink these and just checked the bottle and I see no corn in them. They are USDA approved & Organic. I know Giant Eagle & Trader Joes carry them. I could not tolerate Ensure at all. I drink these with no problem. Without these smoothies, I would have needed a peg tube placed with tube feedings. They helped prevent me from going that route. I have to eat Organic foods too. I have Gastroparesis & Diverticulitis and am on a low fat /low fiber diet. I have done like you read labels and process of elimination with foods. As for going out to restaurants, I call ahead to see what they have that I may be able to eat. I ask where their meat comes from-Organic or not, etc...One restaurant that is very accommodating is Red Lobster. I actually brought my own fat free sour cream and I can't believe its butter and they heated the butter for me to have with a Lobster Tail. I had steamed broccoli with a plain baked potato that I was able to put my own butter & sour cream on it. I also had them substitute saltine crackers for their biscuits. I had them make me a fruit smoothie to have to drink. Like you, I have worked with a Dietician, get products from a local health food store and buy on-line. Good luck and hopefully you will find a balance soon.

[tinkerbella]

My son was telling me about almond milk, to use to make my own shakes, as honestly I didn't know that slim fast had corn in it. The ingredients is confusing and he told me it is going to get more confusing very soon.

[lieze]

I checked out stoneyfield and I saw corn twice on the label.

The first was dextrose the second was sodium citrate.

These both are corn derivatives.

[lieze]

I just checked out almond milk-it's made from ground almonds-I'm allergic to them but I hope it's an option for you Bella.

[songcanary]

I had to laugh when you mentioned the Pepsi. I had one or two of those every single day for decades and looked forward to every one.

The longer you are off of it, the easier it gets. I don't crave it anymore, and now that I know how much crap is in it, I actually avoid all commercial soda. Your tastes will change gradually, and for the better. I am just so grateful that we have more food choices available at the stores now.

[Bears Mommy]

I want to cry for you. I recently found that I had a sulfite sensitivity too. Sulfites are in everything! I see other members suggesting things and in my head I'm saying "nope sulfates in that." There were even sulfites in my kids organic mac and cheese! It is so awful, not to mention your other allergies.

You mentioned lentils. I'm wondering if you could get some organic lentils from a co-op. I'm thinking that those shouldn't be sprayed with sulfites. I know that organic brown rice shouldn't be sprayed either.

Did your mom use any sugar to make her bread? Cane sugar supposedly doesn't have sulfites, but beat sugar does.

Sorry if this isn't any new info to you. I know this has to stink, I'm so sorry you have to deal with this.

[lieze]

I'm thankful for all the help I can get.

I think the bread had cane sugar-not sure why I had am issue.

It was organic unbleached flour, red star yeast, and olive oil.

The first day I ate it-no problem.

Second day had a little trouble.

Third day only a bite and bingo something.

[lieze]

Are organic raisins sulfite free?

I'm worried because grapes are on the no no list-they have naturally occurring sulfites.

Also plain organic sunflower seeds?

I have both of those but I've been afraid to try them.

[mwise]

Hi Lieze,

I was hoping that the Stonyfield products & smoothies would have been an answer for you:( So if I am understanding, it is the ingredients found in corn that affects you? Have you tried process of elimination with each ingredient? I know this could be difficult, but maybe worth a try? I can empathize with you because I am still working on finding foods that I can eat without being symptomatic.

I do take Domperidone 20mg (I get it from Canada) before meals & at bedtime to help with nausea & digestion/motility. That may be another option for you. Unfortunately, you can't get it in the US because the FDA pulled it, but my Cleveland GI doctors send a prescription to Canada so I can get it. It really calmed my stomach down. They tried me on both Reglan and Erythromycin, which neither worked. But the Domperidone was the magic fix.

Will keep praying for you to find the right foods and drinks to work for you:)

[songcanary]

Lieze,

I buy only raisins or any other dried fruit that is clearly marked 'unsulphured'. And I can only find those in the health food market. Many years ago I thought my only problem was a sulfite allergy but that was just the beginning; I ended up having many other allergies as well. It has been a process of elimination.

It has taken me several years to narrow down my allowed foods, and even now I frequently have to reassess. Take heart, you aren't alone. But I'm sorry you belong to our club My allergist told me that corn is a biggie. LOTS of folks allergic to corn.