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Severe Food Allergies


mouse

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mouse Enthusiast

My corn allergy went through the roof. I was hoping that I was allergic to the protein, but after trying marg. I found I am allergic to the whole thing. I used an epi-pen and oxygen last night and finally sent my husband to the drug store to refill my last Medrol Pac (predizone). I am better today, but scared. My dairy allergy is not this bad. But, I have been able to avoid dairy and only use it once or twice a month to make mash potatoes. If I use butter, my body breaks out in these rare type hives and my breathing becomes so bad and then I am on predizone. Tomorrow we are going to the health food store and hunt for a corn free marg. plus so many other items without corn. This is not going to be fun to learn how to cook all over again. I just learned how to cook gluten free.

So, if anyone has tried alternative treatments for allergies I would like to know how it went for you. I cannot take shots as over a two year period they were never able to increase me to the next level.

I also would like some suggestions on brands for the health food store that are gluten free, corn, soy and dairy free. I need marg., ketchup, tarter sauce, tomatoe sauce and some ideas for snacks. I just gave away most all of my gluten-free snacks as most had cornstarch or corn syrup in them.

Thank you for any help you can give me.

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tarnalberry Community Regular

I pretty much never use margarine. You can cook with just plain olive oil or canola oil, and it will turn out just fine.

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mouse Enthusiast

My problem is that I use more margarine in mashed potatoes instead of a lot of milk. I also might have figured out why I reacted so bad on Friday. Besides putting margerine on my baked potato (ate out), I also had a Jack Daniels and coke. Does anyone know if rum has corn in it? I can't live on prednizone and have to figure this out quickly.

Thank you Tarnelberry for the advice, but I already cook with Canola and Olive oil. But, I can't eat a plain baked potato as I hate them. I also like sandwiches every so often, which I suppose I can leave the marg. off.

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burdee Enthusiast

Hi Armetta:

I have gluten, casein and soy intolerances. On potatoes I use casein/soy free margarine "SMART SQUEEZE" made by the Smart Beat Company. On sandwiches I use Nalley's Light Mayonnaise which is made from canola oil and is sugar free (no soy). Also Spectrum Naturals makes a canola based (no soy or dairy) mayonaise, but not the 'canola light' variety which has soy. I'm not sure if soy bothers you, but that's common with people who don't tolerate casein. Good luck shopping.

BURDEE

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tarnalberry Community Regular
My problem is that I use more margarine in mashed potatoes instead of a lot of milk. I also might have figured out why I reacted so bad on Friday. Besides putting margerine on my baked potato (ate out), I also had a Jack Daniels and coke. Does anyone know if rum has corn in it? I can't live on prednizone and have to figure this out quickly.

Thank you Tarnelberry for the advice, but I already cook with Canola and Olive oil. But, I can't eat a plain baked potato as I hate them. I also like sandwiches every so often, which I suppose I can leave the marg. off.

margerine on sandwhiches? I remember seeing that when I went to france and being *shocked*! :-) eh... whatever you grew up with, I suppose. :-)

as for mashed potatoes, I'm CF myself, and found that using chicken broth is a pretty decent substitution. works fabulously for rosemary garlic mashed potatoes, and works reasonably well with a bit of olive oil for regular mashed potatoes as well.

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jnclelland Contributor
My problem is that I use more margarine in mashed potatoes instead of a lot of milk. I also might have figured out why I reacted so bad on Friday. Besides putting margerine on my baked potato (ate out), I also had a Jack Daniels and coke. Does anyone know if rum has corn in it? I can't live on prednizone and have to figure this out quickly.

Don't know about rum, but Coke is sweetened with corn syrup.

Jeanne

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mouse Enthusiast

Mu decaf diet pepsi box does not list corn syrup. Am I misreading it? Aren't diet sodas sweetened with something else? I have the Celiac diet down pat, but this is really throwing me for a loop. Now I have to wonder if the drink did it as I did not ask for diet soda. Maybe, I am still just allergic to the protein of corn and not the whole thing. If that is so, I could still have fries at Famous Sam's (separate frier and they cut them fresh). But, I am just to scared to try them now. From a link that was posted on another thread, it said if you are allergic to the protein, then you can still have the oil which means my margarine. I will have to wait sometime to try it I am allergic to casein which is the protein in milk and so I was hoping that was the case with the corn.

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BRUMI1968 Collaborator

As for margarine...I suggest you try Ghee...it is clarified butter. Purity Farms makes some that says it is lactose and casein free...I'm not particularly sensitive to those things so I can't vouch for non-reaction, but ghee is the only dairy I eat. It is made by heating the butter, then scraping off the junk that floats to the top. It is expensive, but a little bit goes a long way. It does have an interesting taste - but I've gotten used to it. It greases things up just like butter - just tastes a bit different is all.

Corn is a tough one - American food has lots of corn in it. An interesting book to read for you might be "The Omnivores Dilemma" by Michael Pollen...the first section. It is all about how much corn is in our food. I'm sure your library would have the book.

Imagine foods? Is that the name of a brand that makes allergen free cookies? Their snickerdoodles are good.

I'll do more research and post again, but I thought I'd mention the ghee.

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Mango04 Enthusiast

Are you saying you do eat dairy once or twice a month? That might make you react more strongly to the corn, even if the dairy allergy isn't too severe. Sounds strange, but that's what happens to me. I tried reintroducing small amounts of dairy a while back and it made me react to everything. If I eat small amounts of soy, (which I'm also allergic to), even once or twice a month, I react to all sorts of other things all throughout that month as well.

I also just completely stopped using any sort of butter or margarine. I find if I don't have it in my fridge I just don't really need it. Olive oil, coconut oil and grapeseed oil work well for me.

I remember seeing margarine on sandwiches when I was in Australia once. I thought it was pretty surprising too :D

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shai76 Explorer

I have life threatening allergies as well. I am receiving immunotherapy for my environmental allergies, and that seems to be helping me all around. But if you are that allergic to stuff you should really watch the inactive ingredients in your meds. You don't take Advair, do you? It contains milk proteins. My doc was outta town (serving in Iraq, actually) and his associates assistant gave me a sample. I stupidly trusted her. As soon as I inhaled the stuff I started barfing violently, had an asthma attack and brokeout all over. I told the pulmonolgist about it that she sent me to see and she was all, "there's no milk in Advair. But I brought a list of the inactive ingredients from the package and showed her. HA! Doctors don't know what is in meds a lot of the time.

Anyway, the best thing to do now is AVOID at all costs. Read all packaging, but since your allergies are like mine, don't trust anyone or anything. Make everything yourself from scratch. Forget about the margarine, you'll never find a kind that is soy free AND dairy free. Try cooking with olive oil. Make all your french fries from real potatos. Cook only whole foods, no processed stuff. If there are more then a couple ingredients in something, don't bother with it. Rice pasta is pretty good, but I actually prefer just regular jasmine rice.

The best things to have for cooking are a rice steamer, a grill (even an indoor one, which is what I use and it makes great steaks), and ice cream maker, which may sound weird, but you can buy milks you can drink (almond or rice milk) or make some yourself and then make ice cream with no cross contamination. I bought one for $25 that has a base I keep in the freezer and requires no rock salt or ice. You just plug it in, add the ingredients, and within a half an hour you have ice cream.

The good news is I've heard from others that if you stay gluten free you may just "get over" your food allergies. I'm hoping and praying.

My problem is that I use more margarine in mashed potatoes instead of a lot of milk. I also might have figured out why I reacted so bad on Friday. Besides putting margerine on my baked potato (ate out), I also had a Jack Daniels and coke. Does anyone know if rum has corn in it? I can't live on prednizone and have to figure this out quickly.

Thank you Tarnelberry for the advice, but I already cook with Canola and Olive oil. But, I can't eat a plain baked potato as I hate them. I also like sandwiches every so often, which I suppose I can leave the marg. off.

For the mashed potatos you can add broth, or just more rice milk. You shouldn't be drinking colas and alcohol with gluten intolerances and allergies/asthma. Alcohol will make you sicker, and often contains gluten. Coke has caramel color which I'm pretty sure has gluten. If it is regular coke it has corn in it. Salsa on baked potatos isn't bad. I just can't understand why you would rather be sick then eat a plain baked potato? I can't even walk into a restaurant, and I definitly wouldn't take the chance of eating at one with my life threatening allergies.

It just doesn't sound like you are taking your allergies seriously. If you want to get off the predisone and become healthy you seriously need to consider your priorities.

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mouse Enthusiast

Excuse me Shae 76, but I have been gluten free for 28 months. I am 64 years old and because I was diagnosed so late, I will never have a full recovery. Look below my signature at the auto-immune diseases they have diagnosed me with. My quality of life sucks. The only thing I have been able to do is look forward to is going out to dinner. I have eaten out safely for all this time. It has only been just now that the corn allergy has gone to the roof. I do not live on prednisone. I have used 3 medrol Pacs in the last year. I watch my allergies like a hawk. I also do not drink, except one drink when we used to go out to dinner. I am a big lush, aren't I. And I do not like your condesending attitude towards me. The original question was if someone had tried alternative treatments for allergies. According to my doctor I was two weeks away from dead before he thought of Celiac. I have not entertained in this new home (lived here one year) as I don't have the energy. According to the specialists I have seen this is as best as it is going to get. Maybe you want to live within 4 walls and only go to the grocery store, but I want a little more - like going out to dinner a few times a month. I will never travel again or lead a normal life. I have been handling it pretty good until I hear the tone in your posting. Live my life and see how it is. Do you go to the Mall? I can't. I order most everything by phone or online. I always try to be upbeat for the newbies and I teach my GP and his PA about Celiac as I am trying to prevent the young ones from being where I am at. All I wanted was someone to give me ideas on alternative medical treatments and maybe ideas on what I can buy at the health food store. I am out of here.

It also must be nice to be able to get shots for your enviromental allergies. I am classified in the 5% that can not take the shots.

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Mango04 Enthusiast

Was it someone on here who said we all only have a 50% chance of correctly interpreting the tone of a post or email? It's funny because I read that post in a completely different way. Anyway, I hope you find your answer Armetta. You might be amazed at what happens if you completely cut out the dairy. From my experience the difference between a teeny tiny bit of dairy once in a while and no dairy at all is huge. I feel like a different person when I completely cut it out. That might just be me though. :)

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Matilda Enthusiast

..

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jnclelland Contributor
Mu decaf diet pepsi box does not list corn syrup. Am I misreading it? Aren't diet sodas sweetened with something else? I have the Celiac diet down pat, but this is really throwing me for a loop. Now I have to wonder if the drink did it as I did not ask for diet soda.

Diet sodas don't have corn syrup, but regular ones do. (And if you didn't ask for diet, chances are you got regular!)

Jeanne

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Nantzie Collaborator

Since you asked about alternative treatments, I did NAET years ago, when I was getting really bad springtime and fall allergies every year. I wasn't having food issues at the time though. The NAET really did help my hayfever. I live in an area where just about everyone gets allergies, and I'm rarely bothered by anything anymore. I don't think I've taken even Sudafed in years other than when I get an actual cold or flu.

NAET can't cure or treat celiac at all. BUT, it might help with some of your other allergies and intolerances. And it's possible that it would take the edge off the symptoms of being glutened.

I'm planning on trying it again at some point in the future just to see if there's any improvement in symptoms. But, at the same time, the symptoms are sometimes the only way you know you've been effected, so I'm still not sure I'd risk losing the symptoms as a warning bell. I'd hate to walk around eating something that SHOULD be gluten-free for weeks (hello, Twizzlers :huh: ), not knowing that there may be damage going on. But I'd also love to not have the nightmares and body pain. So, I'm not sure yet.

You may also want to look into acupuncture. I've never really done it myself other than a couple times. Acupuncture is pretty well respected in western medicine nowadays. I used to do some clerical work for some orthopedists and they even did referrals to acupuncture for people with chronic pain or post-injury rehab.

I've got scoliosis too. Ugh. I'm dealing with a big old sciatic nerve pinch right now that's got me so flat on my back I can't even change my son's diapers. It sucks.

Hope some of this helps.

Nancy

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tarnalberry Community Regular

If you haven't already, try taking a look at a raw foods cookbook for some ideas. They've also got some great options for CF replacements that are fab (and it looks like not all nuts are off limits, just some of them).

I've been trying to think of things that you can have that you could put on a baked potato. (I know that there's a CFSF margerine available during Passover, but I do believe it has corn... Other than that, the options are pretty much just refrigerated stick forms of whipped canola oil. :-) ) There may be some options there. Nutritional yeast (which is GFSFCF, and I believe corn-free, but you'd need to check), may be an option, but it's an aquired taste. I often have steamed veggies on my baked potatoes when I'm at a restaurant, particularly carrots, for their sweetness. Maybe the SFCF ranch substitute would work on potatoes too. (I'm not sure what you hate about them plain as I enjoy them, so I'm not sure what's trying to be 'corrected', though I understand why you're trying to go that route - a baked potato is pretty simple to ask a kitchen to make safely, then you just have to get it to a state where you don't mind eating them.)

As for alternative treatments... I haven't heard of anything that can help anaphylactic allergies. There was one study that I recall hearing about regarding a new medication (western medicine) Xolair, mabe? That was being used on those with anaphylactic peanut allergies, with mixed results. The goal was just to get the allergy to not be life-threatening, essentially. You might talk to your allergist about it, and do some 'net research, though I know it certainly wasn't the blockbuster they were hoping for.

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shai76 Explorer
Excuse me Shae 76, but I have been gluten free for 28 months. I am 64 years old and because I was diagnosed so late, I will never have a full recovery. Look below my signature at the auto-immune diseases they have diagnosed me with. My quality of life sucks. The only thing I have been able to do is look forward to is going out to dinner. I have eaten out safely for all this time. It has only been just now that the corn allergy has gone to the roof. I do not live on prednisone. I have used 3 medrol Pacs in the last year. I watch my allergies like a hawk. I also do not drink, except one drink when we used to go out to dinner. I am a big lush, aren't I. And I do not like your condesending attitude towards me. The original question was if someone had tried alternative treatments for allergies. According to my doctor I was two weeks away from dead before he thought of Celiac. I have not entertained in this new home (lived here one year) as I don't have the energy. According to the specialists I have seen this is as best as it is going to get. Maybe you want to live within 4 walls and only go to the grocery store, but I want a little more - like going out to dinner a few times a month. I will never travel again or lead a normal life. I have been handling it pretty good until I hear the tone in your posting. Live my life and see how it is. Do you go to the Mall? I can't. I order most everything by phone or online. I always try to be upbeat for the newbies and I teach my GP and his PA about Celiac as I am trying to prevent the young ones from being where I am at. All I wanted was someone to give me ideas on alternative medical treatments and maybe ideas on what I can buy at the health food store. I am out of here.

It also must be nice to be able to get shots for your enviromental allergies. I am classified in the 5% that can not take the shots.

:huh: I'm sorry Armetta. Please don't be so angry. I was just trying to help. I've had life long anaphelectic allergies and reflux disease so I thought my ideas could be valued on this topic.

It's not that I don't WANT to go into a restaurant. I can't. I can die from being in the same room as milk products cooking. I would love to go to a restaurant, but I do not feel it is worth my life. I have a small son and a disabled husband who I love very much. I would not want to jeopardize leaving them alone in this world because I wanted to eat out instead of just cooking something at home.

And I don't think this is a contest of "who is the sickest?" I understand your misery because I have been there, and I am getting better. I believe you can too. Maybe I am a bit optimistic about this all, but sometimes having a good attitude helps with your health.

I also had an anaphelectic reaction to my allergy shots at first. They just took my dose down so far that it will take years to complete the building phase. I think it is worth going to the allergist every week for years, and following their reccomendations of staying as far away from the things that make me sick as I can. If that is not the treatment for you I am not sure what will work. Maybe You could try seeing a holistic health practitioner and ask him/her what would be the best course of action for you. Check out your phone book, there may be some listed under "natural health consultants" or something similar. Massage therapy, like reflexology, has helped me as well. Plus ig gives you an excuse to treat yourself to a day spa or something like that. Just some thoughts. Good luck. :)

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mouse Enthusiast

I am sorry shai76 that I lost my cool, but I have taken my allergies seriously for over 20 years. I have seen the best allergist in the Midwest when I lived there. I took allergy shots for over two years and never could they increase the dosage as my arm would just balloon. That is when they told me that I was in the 5% class that could not take the shots. I have been on a nebulizer since the second to last pneumonia 8 years ago. The last pneumonia was rare and almost killed me (6 years ago) and required lung surgery and cardiac intensive care. I am not trying to compete with anyone for illnesses, just want people to know that going gluten-free is not an option, but a necessary life change so that they don't end up like me. I still plan on staying totally away from my food allergens, but just want them calmed a little so that if I accidentally get any one of them in something, then I don't have to go on a Medrol Pac or use an Epi-pen. I keep finding things in the pantry and frig that have corn in them. And if my husband does not use them or want them, then they are given away. I am sorry that you can not eat in a restaurant and that your allergies are that severe. I can be around the allergen, just cannot ingest it. And luckily I have no outside allergies like many in Arizona get. My poor dog is now on allergen shots that I have to administer. The only thing I look forward to is eating out about 3 times a month and I am very careful on what I eat, which is probably why I have not reacted to my allergens. But now, I will have to email all of the restaurants that have gluten-free menu's and ask what does not have any corn substance besides the gluten.

Nancy, thank you for the NAET advice. I will check with my GP as he also believes in alternative treatments. I tried acupuncture many years ago for my fibromyaliga and it did not help at all (6 months). But, I have a brother in law that swears by it. I guess it all depends on who is doing it. May I suggest a chiro for the Scolosis. I see one weekly and he said he can't straighten the spine, but he can move it some. It has really helped to take the really bad pain away. He also found by X-ray, that the base of my cervical spine is trying to fuse together. He said no manual manipulation can be done, but he uses a gun of some sort, trying to keep them apart. I know what it is like to try and stand in the kitchen with your lower back screaming at you. It must be doubly hard with a baby that you want to hold. Good luck to you. There was a link somewhere on here about scoliosis and Celiac. I am not good about doing a search or I would find it for you.

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Judyin Philly Enthusiast
1.And I don't think this is a contest of "who is the sickest?"

2. sometimes having a good attitude helps with your health.

shai76--with all respect intended...maybe as a new member you might want to try in the future not to make general sweeping assumptions--esp to a member who has been a rock of postitive information and attitude on the forum. I just saw where Armetta sent an appology to you...that shows what a great gal she is.

We welcome you and hope that you continue to find help and support in your hours of need on this very loving forum.

judy in philly

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Guest nini

NAET might be a good option for you. I tried it briefly, and was kind of turned off by the claims, but a lot of people swear by it and say that it really really helps.

Chiropractic is also a good thing to do just to help your body help heal itself, and massage to calm your nervous system down might be good too.

For baked potatoes, I like to put steamed broccoli on mine, load it up with any steamed veggies... that is a good choice. Also, if you are at home, you can make a homemade chili and smother your spud with chili!

As far as smashed taters go, I like them with milk, but have also had them with chicken broth... add some garlic and salt and pepper to that and yummmmmm

I do a lot of cooking with either olive oil or canola oil, you can get creative with your spices and that is where the flavor comes in!

Good luck with it all.

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shai76 Explorer

armetta, no need to apologize. I understand your frustrations. It's hard living like that. I really hope you find something to help youf eel better.

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ajay Newbie
My problem is that I use more margarine in mashed potatoes instead of a lot of milk. I also might have figured out why I reacted so bad on Friday. Besides putting margerine on my baked potato (ate out), I also had a Jack Daniels and coke. Does anyone know if rum has corn in it? I can't live on prednizone and have to figure this out quickly.

Thank you Tarnelberry for the advice, but I already cook with Canola and Olive oil. But, I can't eat a plain baked potato as I hate them. I also like sandwiches every so often, which I suppose I can leave the marg. off.

Hi Armetta,

Even diet soda (alas!) usually has caramel coloring in it. Caramel coloring is often grain derived (wheat or corn-- choose your poison). I don't know what your sugar tolerances are, but I don't react to Whole Foods 365 Cola [ingredients: filtered carbonated water, pure cane sugar, caramel color (from cane sugar) tartaric acid, natural cola nut flavor and citric acid] I think others have reacted to citric acid & cream of tartar, though. I'm sure you could bring your own cola to the bartender, especially if you go to the same places when you go out. I have found that my dining out options vary. I have no trouble at expensive restaurants, mixed results at places where the food is cooked to order, and I don't even bother with chain restaurants. I usually try to go just a bit earlier than the dinner hour, in hopes that the waitstaff isn't totally fried yet & can take the time to check on eveything. Strangely, even when I'm not getting drinks, I usually have very good luck when I order dinner at the bar. Could be that since bartenders don't deal with as many dinner orders?

Generally speaking though, when someone says "let's just order lunch" or "why don't we go out to eat?" I have to stifle a moment of panic.

I'm dreaming of the day when I can have a cosmo. I may end up just bringing my own cranberry juice (sans corn syrup) to a bar sometime when I'm feeling particularly gutsy.

Oh, and for reasons I don't understand, I have trouble with annatto. I don't know why, but I figured I'd pass that along.

Potatoes...I really like chives on potatoes. and fresh ground pepper & kosher salt. And I heartily second the homemade chili option!

Good luck with everything. I find it very challenging to avoid corn BUT not impossible. There's a few other threads on the board about corn allergies, too.

Cheers!

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mouse Enthusiast

ajay, thank you for all the advice. I am going to email Pepsi tomorrow and ask about their carmel color. I know it is not wheat as it is on the gluten free list. I wrote down the Whole Foods soda. But what is a Cosmo and annatto? At least here I can ask dumb questions :blink: .

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mouse Enthusiast

Another corn question. I emailed Pepsi and have yet to hear back from them, but I am not drinking any diet Pepsi until I find out. MY QUESTION is does anyone know if there is corn of anysort in the Toll House Morsels? Since this corn allergy has hit the roof, I have lost 4 pounds and cannot afford to. I cannot eat enough calories in the day and when I before lost a couple of pounds I would eat gluten-free candy and cookies. Now I can't as they all have corn in them - at least the ones I have researched. My cleaning ladies love me as they are getting all of my pantry items that have corn in them. I am going to go broke replacing this stuff. I just made the gluten free choc. chip cookies, yesterday and am afraid to eat them until I know. My wheezing has been bad today which I assume is because of the prior days I drank Pepsi. I just never thought of the carmel coloring as I know that anytime it was listed it was wheat free as I follow all the gluten-free lists. I feel like a Newbie again, but with a different problem. Thank you for anymore advice.

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Judyin Philly Enthusiast

armetta'

I don't know about corn as i'm questioning it myself but 2 tips.

diet Pepsi--corn or no corn--I can't use any aspertaine (?)sp or any kind of artificial sweetners so could you have a problem with that. think i mentioned that i only drink soda coke or 7-up in stead of the 'real drinks' i used to love....now drink northern cranberry juice and seltcer water low sodium.

it is refereshing and pretty natural.

I just made my choc chip cookies fianlly....couldn't stand it any more it was so easy and tasted 1/2 if one and it was good..not gritty .will see which recipe i used. know i used the 'Gluten-Free Flour Mix rom Good Eatz..hadn't tried it before. since i have all the flours, think i'll make up some bags of it to put in freezer.

i have the bag down stairs and will ck for you.

judy--i don't think there is as i THINK PATTI USES THEM and she can't do corn.

maybe she'll see this or you could eamil her.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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