bluejeangirl

Gastroparesis is a disorder in which the stomach takes too long to empty its contents. I'll get this way often. It has two causes that I know of. One is a complication of type 1 diabetes. Diabetes can damage the vaus nerve if blood glucose levels remain high over a long period of time. It causes a chemical change in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves.

The other is gastrities which is what I get. An inflammation of the stomach lining. Causes can be alcohol, spicey foods, eating too much at once, smoking, or prolong use of anti-inflammatory drugs like NSAIDS. Or bacteria like E-coli, salmonella h-pylori (sp?) I also read certain dieases such as pernicious anemia, or auto immune disorders can cause it too.

Spicey foods, wine and tomatoes will do it for me. But I know I get this way at least once a month and lasts for 3 to 5 days. I usually take acid blockers like prilosec for about a week. I can't always pinpoint the cause but isn't anemia and auto immune disorders text book for celiacs? Maybe you can explain this to your doctor.

Good luck

Gail

The Krispy Kreme Burger.....that was something that the comedian Jim Gaffigan predicted would happen - he's HILLARIOUS, you should check him out. He makes fun of America's obsession with foods and mixing different foods. He makes a lot of fun of the Hot Pocket. I can't even tell you how funny he is - and sadly, what he makes fun of are true things that we do.

This guy is the funniest comedian EVER! I couldn't breath I was laughing so hard about his hot pockets routine. I loved it. I wish I could see him live. Ellen often talks about how when they serve pizza by the time you get it you're so hungry you shove the first piece in your mouth only to burn the roof of your mouth with the chesse....everytime. Sorry I don't miss it.

On Food Network, Giada did a recipe for Espresso Zabaglione, which is WONDERFUL. It's basically a cooked custard made from egg yolks and sugar that you mix into your coffee instead of milk. I add some chocolate too and it's the best mocha I've ever had. Really creamy and rich tasting. Even better than heavy cream. And really the base of it is just the egg yolks and sugar, so if you don't want to chance such a big dose off egg yolks, the egg yolk and sugar concoction is pretty good by itself if you want to just eat a spoonful of it to see what would happen.

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Nancy

I was wondering, the recipe calls for 4 eggs yolks to 1 cup of coffee. Did you find this to be alot? How many servings did this make? I'm wondering if you can make the custard and keep in the fridge and add it to your coffee like creamer?

Thanks,

Gail

From reading on the MSG site it looks like most of them are also sensitive to either sulfites or tyramine or both. I havent been able to determine if I'm sensitive to sulfites or not because I buy stuff that is "unsulphered" just to be safe. I can only tolerate bananas occasionally...usually not. I react to avocados, all fermented products, cheese, yogurt, citrus is ok sometimes but not too much, raspberries...I can only eat a few, I reacted to raisins. This is all stuff that is high in Tyramine. My reaction is like a histamine reaction....some swelling and I can feel pressure and my veins swell so that they are visible and I can sometimes feel the blood pumping through. It causes a headache or migraine. I havent tried yogurt in a long time and I'm off dairy right now but last night I tested some and got this "histamine" reaction for a couple hours. I dont think I'm intolerant to dairy but more than likely its something chemical like the tyramine. I made sure the yogurt was organic and free of everything...the only ingredient was whole milk.

Racheal,

Hmmm this is so interesting.....I've never came across this info before. I know I'm a big MSG reactor and I need to expand my focus on what other things MSG sensitive people are also saying about other related chemicals etc. All I know is I get funny reactions with all the foods listed above. I know they're histamine reactions because I get wired and unable to relax. I'll sleep for about 5 or maybe 6 hrs and I'm wide awake and sneezing like crazy. What can make you sneeze at 4 in the morning......it seems to hit at this hr alot. I can get up at this hr. but I feel real tired in the afternoon and if I can lay down I'll fall asleep right away. Its a scary tired like if I'm driving I think I'd pull over.

I'm finding this thread very interesting. Nice to know others are having the same responsing as me. I find it comforting and want to jump in but I'm learning more than anything. I didn't connect the Aux-thingy stuff with MSG. Never heard about it .....and Grimway foods are the only supplier here in WI for organics veggies. They must be a pretty big operation.

So thanks for all your info, I think you must of been a good student in school...lol. Also for all others how are in the same boat who have been posting. Its fun to collabarate all the ideas good or bad and see if the dots connect.

blessings,

Gail

I did try the SCD diet for a week and decided it wasn't for me. I think I could go back on if I worked on the foods that work and eliminate the foods that don't. I don't know how you can heal with this diet though if your not eating yogurt. I was making the yogurt like they say but I would mix it with some gently cooked fruit and it was too high in carbs for me to function. The yogurt also gave me intestinal cramps. The other problem was it seems like you eat alot of carrots and I don't tolerate them. Anyway if you can make the yogurt with an alternative source like goat milk (which is what I'm going to try next ) or coconut milk it would really help. And of course if you don't have the blood sugar problems like I do (sigh) those are the only problems I see with it.

Let me see Fruits, Veggies, and brown rice. High in fiber. If you've not been eating like this before your body has to get used to it. It just takes alittle time. Your making good choices though, your body will get used to it before you know it and start to make those enzyems you need to handle the fiber.

Gail

Know, I assumed they were. No...no alcohol just some sprite. I know that my affects when being glutenned are far more worse than at the beginning. This really scared me though. Do you ever feel really dizzy...

Being dizzy can happen just because your heart is racing. Its like a panic attack. I would suspect the sausage had MSG in it. That would make my heart race because I'm very sensitive to it. It's also common to alot of celiacs. Another warning, MSG is often hidden as an ingredient under different names. Its frustrating. I rarely find sausage that I don't react to, so I just make my own. If you have a food diary begin to notice if you have this symptom to other foods and read labels for possible MSG offenders. I hope your feeling better.

Gail

Nini it must be wonderful to be rid of all that weight.

I think the people that gain weight are those that had all their food go right through them. Now they are actually digesting and assimilating their foods,..... which is a good thing. I lost weight on gluten free choices because a big chunk of my diet was gone. I'm rather picky about what I put in my body and didn't fall for the gluten free mixes for an alternative. For one thing everything you eat for awhile should be nutriative {is that a word} dense. Your body hasn't been recieving vitamins and minerals foods had to offer for a long time. Most of my choices were protein, veggies, fruit, brown rice, and millet bread. I felt great. I started to eat yogurt unsweeted with fruit like blueberries. I ate nut butters on rice crackers or those nut crackers. I was starting to feel good for the first time in my life. Which became my motivation.

I then went through a time of testing. I became interested in the gluten free isle in my grocery store. I decided to try cake mixes and try my hand at making cookies, buying all the flours etc. I started to include the snacks you could have like cheetos and potato chips. What happened is I didn't feel good. I didn't gain weight eating them but I could have if I continued. My blood sugar started to go through the roof and felt cranky and naucous all the time. All those foods are high in sugar, potato starch {another sugar} corn starch etc. Diabeties runs in my family and no doubt could of become one eating that way.

So long story but this way of eating doesn't have to be expensive because you don't need to buy all that stuff anyway. The bread is the only thing you have to buy only because its nice to have it

toasted in the morning with eggs or to make a tuna sandwich. But I keep it frozen since it takes me over a week to eat a loaf. I don't buy the breads made with junk either. But that's a personal taste and alot of people have their favorites.

Your going to feel better if you make good choices and have energy like you didn't know you had. Don't worry about weight gain at all you're going to be a beautiful bride. I'm excited for you!

Blessings,

Gail

Being wheat free is a decision made by alot of people who want a healthy diet. I'll read alot of web sites about the paleolithic diet because it's very incouraging about the "dangerous wheat" grains along with other grain. I can see why people will stay away from it. Sprouted grain bread and sour doughs are sometimes chosen by those who follow this diet because it contains the right enzyems to take out the antinutrients wheat has that is bad for you. Something like pytic acid (can't remember) They're don't have the fears that celiacs have with wheat and I think they're probably incensitive to them. She was probably just trying to be nice.

gail

I will sometimes get swollen glands in my neck the next morning, actually I'll feel it coming on during the night. I just expirenced this when I tried including oats back into my diet. I felt ok eating a small amount but then being alittle over enthusiastic I ate oatmeal cookies too many I'm afraid, I got the swollen gland thing. I think it was an overload to my immune system., I guess that's why celiacs catch alot of colds etc.

Actually, I have been struggling with this as well. I have had celiac for a year now and only recently has it effected my heart. I have been monitored, and it seems as though there are no heart problems. I find that it happens during the digestion process. My doctor seems to think it may be related to MSG. For some reason, some Celiac patients cannot ingest MSG because it causes these types of attacks. That may explain why it doesn't happen all that often since I try my hardest to avoid MSG. Anyway, just something you may want to read about. Hope this helps.

Hello Gail,

I am experiencing some similar problems and my doctor suggested that it may be MSG as well. How did you determine that was what the problem was? Is there some sort of test, like for allergies? It is a very miserable and scary feeling and I just want to avoid it at all costs. It has happened twice in the last 2 weeks. Before that, it never really happened...although I do try to avoid MSG normally.

Any info you can share would be most helpful!

Rebecca

MSG is more frightning to me than gluten because my reaction to it is worse. My reactions are my test. I haven't ate at a chinese restuarant since 1980 where I would get my worst reactions. If you google MSG you'll get alot of info on it. It's hidden under other names like: hydrolyzed soy protein, autolyzed yeast, carrageenan, sodium caseinate, torula yeast disodium guanylate, maltodextrin, soy sauce and natural flavors. Reminds you of gluten huh. It's probably hidden under other names too because I don't always catch it. I make my own chicken broth, and pork sausage I'm so afraid of it. I would rather err on gluten then MSG. Although it was probable gluten that caused this problem in the fisrt place. Which means I have been eating gluten for the twenty years making things worse. My symptoms are racing heart, panic, flushed face, and I'll get real tired but can't fall asleep. Its in broths, so be careful in things like canned tuna if the second ingred. is broth, or turkey lunch meats because it will have turkey and broth for the ingredients, also alot of pork products are soaked in a solution to make it juicer and I think its in there because I'll get a reaction to it. Same with a whole turkey, they are all soaked in a solution. Some foods natually contain alot of glutamite. The high end ones are Rouguefort cheese, Parmesan cheese, soy sause, walnuts, tomato juice and grape juice. That's about all I can think of for now......hope this helps, its not fun trying to play detective all the time with ingrediets and lablel reading. I wonder what I look like half the time trying to squint my eyes to read all the little words hehe. My husband panics when I ask him to go to the store with me.

Restuarants........the worst ones are the diner types where they make alot of gravies and slop food. Good luck Rebecca hope you get better although this has never gone away for me.

Gail

Foods that have Mono Sodium Glutamate will make my heart beat fast. I can't have canned soups, chips like Doritos, frozen pizza's, all kinds of sausages and lunch meats so many things. Mostly foods that are convient, prepared or "have alot of favor". You might want to check this out.

Gail

Yes I did see it. I suppose people think all celiacs are crazy killers now. It was interesting to actually see blunted villi. I would love to have a picture of healthy villi and next to it the damaged blunted villi on my refrigerator. That would take away any urge to eat gluten. Ugghh.

if you have any nerve impingement that can cause this numb tingling sensation. If you have a chiropractor that you trust, I would go to them...

I agree with Nini. The Chiro will know what to adjust {its in the neck area} when you tell him/her your index finger is going funny. So you really don't need a x-ray, and I would insist on it. Pick a doctor that's been in practice for awhile. If you have any questions I can ask my DH who is a chiropractor.

gail

I've tried New Grist, made with sorghum and rice. Its ok but I would rather have rolling rock anyday. I usually drink a beer when I have a pizza or sometimes with taco's it really hits the spot. New grist is on the sweeter side and alittle stronger then I'm used to. Yeah its hard giving up beer, or good tasting beer. So is it the hops in beer or wheat that's bad for celiacs. And if your just gluten intolerant can you have beer? Anyone know?

Gail

Are you drinking too much coffee. Sometimes when the acidity is too high in stomach foods will make you sick especially the first things you eat in the morning. Fruit is also high in acid which adds to the problem.

Try eating foods that are alkalizing and maybe some anti acids for awhile. I know its hard to advise less coffee when your almost depending on it to stay awake but it would help.

Don't hit me....gail

Karen, Sorry to hear what the doctor said about being on Prednisone for so long. It would of been nice if the Doctor could of told you more though after going through all that. Don't get it why can't you see through the water,......anyway I don't know what I'm talking about either. I'll be praying for you in June. Keep strong. {{hugs}}

gail

I don't know if you would want to do this or not because its alittle pricey but I take SAMe. I take 200 mg.s three times a day. Its helps me tremendously. It's also good for joint pain and liver health. I decided to go this route because I had the joint pain in my hips and wanted to try something naturally before it got any worse and had to see a doctor for it. But with the depression it works really well and almost feel like I'm being energized and feel more alert. The drawback is I don't sleep as long, it seems like I awaken after about 6 hrs and just lay awake for another hour and get up. Of course I was never a good sleeper and I can say I don't feel I suffer for it during the day. Well except for an occasional nap....about 2x a week I'll need a nap. I'm alittle anti drug though and thought I'd share whats been working for me. However it's not for everyone and alot of people need anti depressants and its NOTHING to be worried about in anyway. As a celiac you've been not assimilating the vitamins [especially B's] from the foods you've been eating. Make sure your taking suppliments. Eat alot of brown rice instead of white. Instead of food being your reward, think of other things. Maybe a walk in the park, a good movie, a new recipe for dinner, go the the library, help out in a soup kitchen or church, puppies, dogs, and children always make me laugh. Anything to break out of thoughts focusing on what your missing with your diet restrictions.

gail

I understand EXACTLY how you feel. I am in the same position at the moment.

Had a gastroscopy and colonoscopy 2 weeks ago. GI told me not to go back on gluten for it. I have been gluten-free for a year. Had blood tests after 6 weeks gluten-free - they were understandably negative.

The gastroscopy showed major inflammation and LOTS of ulcers and absolutely no evidence of Celiac Disease - also not really surprising after being gluten-free for a year. So according to the GI I have a gluten intolerance which may or may not clear up with the ulcer meds. He has given me acid-blocker medication which he says I may have to be on indefinitely. He believes the ulcers and inflammation have been causing most of my symptoms and food sensitivities. I must admit after 2 weeks on the medication my bloating and stomach problems have calmed down a whole lot.

So do I try and eat gluten again after a while? Or do I just accept a diagnosis of gluten intolerance and stay off it anyway? I don't know what to do.

Yvonne

Yvonne,

I'm so glad you found out what is causing the pain and bloating. Did you get any other information as to why it got that way. I suppose you have to stay away from things like citrus and tomatoes etc. I'll get acid stomach pretty easy and if I have spaghetti sauce on polenta [which I love] I pay the price with a round of Prilosec. At $20 a pop its an expensive meal. But I'll so again no doubt. Especially since I get acidy with other foods anyway. I really hope you get better fast with the blockers. I would give it time to really heal and do a gluten challenge with a small amount of wheat and see how it feels but give it a couple of days so you'll know your not getting a delayed reaction. If you feel ok then eat more. I would never eat alot of it just because gluten is hard to digest, allergies or not, and why compromise the gut when it been through so much.

gail

I stopped eating apples this fall because whenever I would eat one I'd get burpy and then get a headache/nauseous feeling. I know these apples were not waxed because I bought them off a farm. Come to think about it I've had apple pie since then and didn't get the same feeling. Hmmm maybe the peeling is the culprit or being cooked changes it. I've had applesauce too with no problem, lol I'm just realizing this.

gail

Hey that looks good. I wish I had that store in my area. Its nice to have those things when your in a time crunch.

gail

I just did a 3 month gluten challenge (doctor ordered). It almost shut down my intestines, so it is not worth it. Not to mention the fact that now I have to remove the gluten from my system all over again. This is a disease that needs to get the recognition of the medical community so that research can be funded and a cure can be found. The fact that my doctor took 10 years to diagnose me is ridiculous. Not to mention the amount of $$$ I spent on medical procedures and tests. People need to go through the proper testing before claiming this disease and then need to stick with it. If you don't you only hurt the rest of us who are trying to further along progress!!!!!

I'm fine with not having an official diagnoses. The reasons you listed are the reasons I don't want one. The gluten challenge, 10 years before the doctor actually gives you the diagnoses, $$$$$$$ on tests. I don't need to spend $1,000 of dollars in repect for the medical community. I don't think this will speed up a cure. That will come in time. But in repect for you and others that went through all of that I won't say I have celiac although I have all the symtoms. I just say I have a gluten sensitivity.

Gail

I am so fed up with this diet. I hate the fact that I have to think before I eat. Think before I eat. There is no freedom in that and it is making me angry, which is increasing my depression.

Has anyone ever decided to bag it in and just go back to a gluten filled diet? What happened? I have been strictly gluten free since being diagnosed but I am ready to quit.

Here's the problem. Well let me put it this way,.. I have to take a notebook and plan my meals at least for the next 2 to 4 days ahead of time. I make sure I have all the ingredients all the snack foods, all the potential problems that could occur all figured out. I usually do this while watching tv. at night. This way it frees me up because all I have to do is look down at my menu and not have to think about it. Also its usually to late to start thinking about what I'm going to eat when I'm hungry. Its only then that I want to give up and give in to my emotions. Always plan ahead and always have gluten free snacks especially because you can always just spread a few rice cakes with peanut butter to take the edge off and then if you have to go to the store you'll be less likely to cheat or go to a drive through. I have to say I love sticking to a planned routine. I also love the foods I eat. They are different but I've grown accustom to them. So will you. I do understant in the beginning its overwhelming. But you'll get the hang of it. Believe me the taste of a piece of bread is not worth the pain later.

Gail

The only time I refer to it is when I'm talking to my sister so we call it Knic Knac Patty whac bread. I hoped that they never ran out of it in the store where I had to actually inquire when it was coming in. Now I can breath relief I can come closer to the pronunciation.

Gail

Your parents must of been frantic Molly. When your a baby all you can hope for is the diagnosis and get the right treatment before time runs out. Also reading your story it amazes me at what the doctors say. You had the classic symptoms. I also didn't get the diarrhea as much as the constipation which I believe happens just because you can get so dehydrated. Your sure look healthy and vibrant now and I hope you continue to get stronger and stronger without any further complications.

Gail