Omg...i Might Be On To Something

[miamia]

Great news Julie!! Thats awesome that you're doing so much better.

I havent forgotten about my scientificness either.

I've been super busy and the last few weeks my moms hubby is on summer vacation from his night time teaching job....which means I dont get too much computer time after work....I have to share. I'm learning.

The scientificness has to do with some things I've learned about sulfites and sulfer foods. I'll have to refresh my memory before I post. It was alot of info. and some of it has floated away...ummmm possibly cuz I Racheled too much ice cream and bread last weekend. Went to a fair yesterday...ate a box of cookies and a small bit of chocolatey goodness.

I will have to regroup and organize my thoughts again. Sheeeesh....good thing I'm not really a president.....we'd all be in big trouble.

I havent gotten any results back from my histamine test...will post as soon as I get them. I usually dont get test results back until I'm at my doctor appt. I think I may have an appt. this week....need to call and check. I dont know why they dont just give me appt. reminder cards.

My 24 hour urine results should definately be in by now. I had to go back to nurse Crachet to redo the blood test...I didnt do it until last Thursday. That woman is horrid....I'm now sporting a bruise on my other arm.

Rachel-

you must complain about this evil nurse!!!! What was your 24 hr pee in a bucket test for?

Miamia

[jerseyangel]

Hey all- Long time no post. I have been reading as much as possible though. I wanted to let you all know that my husband and I moved out of our apartment. We went to Seattle/Vancouver for ten days and when we returned we grabbed the cats, clothes and moved in with his parents while we look for a place to live. The week before we left I ended up going in for an emergency colonoscopy after over 6 weeks of D and there was NOTHING wrong with me. The night before we left, I was sitting at the kitchen table, got really nauseous and ended up vomiting for over a half hour.

While we were away we realized that something in our apartment was making me sick. I know i've mentioned this before, but it became SO apparent when we were away. I was still pretty cautious about what/where I ate (we only ate out three or four times and two places had gluten-free menus). I even cheated on my no legumes rule (I had some chocolate with soy in it and I did eat something with peanuts in it) and yes, I paid but not NEARLY as bad as I would have paid at home. Of course, I didn't cheat with gluten (no desire anyway). But I had so much more energy, felt so much better, very little nausea, the D cleared up and no night sweats. it's crazy....I just really wonder what was wrong with it (the apartment). I don't know if it was a mold problem, but I am so glad to be out of there.

I hope all is well in Rachelville and i will post again soon. Just wanted to say hi! Beverly

Could it have been the water?

[dlp252]

Donna,

How is your jaw/mouth doing today?? Any better? Hang in there and hopefully you will get some relief soon. Let us know how your appt goes and what they decide.

Hugs!!

side note- I had all my mercury fillings taken out years ago, it's one of the first things I did when I started getting sick.

Thanks, not well yesterday unfortunately. I was so sick I couldn't even sit up without feeling like I would throw up or pass out. I stayed home from work, and tried to log on here once, but had to shut off the computer before I could even find this thread. The pain level was low yesterday fortunately, but that's probably why I was so sick...I took 2 vicodin before bed and 2 more at midnight...never did get back to sleep, so think that's why I was so sick when I got up at 4:00 yesterday. Didn't want to eat anything, the only thing that sounded good and seemed to settle my stomach were the corn tortillas I had in the freezer, so I had three of those throughout the day plus a little ground meat. BUT, unfortunatley, I think throughout the weekend somewhere I aggravated the tooth that was cracked because it really started to hurt last night, throughout the night and today I can't even eat today because even chewing on the right side, the left hurts too much. They don't want me to take any pain medicine before my appointment today, but I had to take 3 advil this morning...that barely touched the pain. I just have two more hours to go here at work, but not sure I'll even make it that long at this rate. I brought the advil with me so as soon as the doctor is done, I'm popping some, lol.

[Rachel--24]

Rachel-

you must complain about this evil nurse!!!! What was your 24 hr pee in a bucket test for?

Miamia

The test was for histamines...both blood and urine were for histamines. Did you get your results back yet?

Could it have been the water?

Good thinking Patti!!! I was thinking about mold but I'm not sure that mold would cause the vomiting Bev always gets. Water is a good possibility.

[jerseyangel]

Donna, you poor thing! That pain sounds absolutely horrible--not to mention the nausea and dizziness

I'm thinking positive thoughts for you for your appt today--let us know, if you're up to it

[AndreaB]

Donna,

Having pain so bad that you can't eat is awful.

I surely hope that your dentist/doctor can get this ironed out and you get this pain stabilized soon.

[lindalee]

Donna, Have you tried rinsing with epson salt(don't laugh-know yawl think all I talk about is epson salt) but it works. I had teeth, gum problems before I figured out the celiac problem and it works or did for me.

Bev, just noiced the mtndog - you have really been through it- hope you get well.

You too Carla and Julie and everyone.

Back to cleaning the garage. AC is out.

[Guest Mtndog]

Donna- hang in there... that's such a bummer.

As far as the apt. goes, I honestly don't know. maybe the walls were painted with gluten

[Rachel--24]

Donna...I somehow missed your post earlier. I'm sorry you're not feeling too good.

What happened? Was it food related or do you have the flu or something? I caught a cold so am feeling pretty yucky myself...it sounds like you were having a really bad time though. I was hoping you were ok....hadnt seen any posts from you. Hope it passes quickly.

I have some brain fog lately so havent been posting too much and havent been feeling the scientificness in me. Actually I'm feeling pretty dumb.

I forgot to go to my doctors appt. yesterday. I just called them to find out my next appt. and it was yesterday.

They have the results from my pee test but not the blood test yet. They scheduled me to come in tomorrow but since I'm sick with a cold I may not make it. I left work an hour early today.

She said to just call if I cant make it....I hope I'm not too bad off cuz I wanna find out about the test....actually I cant wait.

The next test I'm gonna ask for is a urine test for sulfur...I think this might be my problem and I think it can affect copper levels and also thyroid hormones. If it afects copper levels...it could be causing the histamine to increase. There was alot of scientificness about this but I cant remember it all right now. I'm still pretty sure my mouth blisters are caused by sulfites and sulfur foods.

When I was on my Candida diet is when I felt the best. I didnt eat anything processed for 4 months and I didnt have any headaches and my hypothyroid symptoms went away. I was still getting reactions though...to eggs, milk, cabbage, garlic, onions, some lettuce, pumpkin seeds and a few other things. I found out these all have something in common....sulfur compounds. Sulfites are also in medications....they were in my thyroid meds. Probably in alot of the supplements too. It could still be MSG but that wouldnt explain my reactions to the foods listed above.

I'm not eating foods with possible MSG but anything processed likely has some amount of sulfites in it so I keep getting mouth blisters from processed foods....if the food had cornstarch or another ingredient very high in sulfites I would react very quickly and noticeably. If the product has no ingredient indicating sulfites the amounts are probably small so it takes time to build up and cause a reaction. Thats what I'm noticing. Once I react....I'm reacting to everything until the build up subsides....but then I start all over.

I'm cutting out all sulfur rich foods and keeping my fingers crossed. This means no more ice cream for now.

BIG BUMMER.

Oh well....if I can get rid of symptoms I'm sure I could tolerate small amounts here and there...definately not the gallons I've been consuming though. I still have more studying to do but it sounds like a good possibility.

Will post my 24 hour pee test results tomorrow if I make it to the appt.

Good nite all.

[AndreaB]

Rachel,

I'm beginning to think "a little here and there" isn't in your vocabulary.

[Green12]

Will post more tomorrow......

...just wanted to say Donna I am so sorry you have been in so much pain. Hang in there I'll check in tomorrow to see how you are doing.

[Guest Robbin]

I hope you feel better too Donna. You too Rachel-a lot of people are getting colds around here too. Take care everyone.

[miamia]

its weird I have been doing alot of thinking and I know that some people cut gluten out and get better and thats it. But it seems like so many people cut it out and get sicker - whether discovering more food allergies or other sensitivities. I know they say the gluten allergy is so strong it can mask the other symptoms. I guess I'm not about to go out and eat gluten I know how I react to it but I wonder if there is some component in it that is actually good for the system that we overlook when focusing on how bad it is. I don't know if this makes sense. I have not though it out much. I read this thing I wrote the other day when I first cut it out and my doctor and i thought I had finally founf the answer. Now its 2 -3 years later and I am sicker. I just feel like nothing seems to make any sense anymore.

miamia

[christine 25]

its weird I have been doing alot of thinking and I know that some people cut gluten out and get better and thats it. But it seems like so many people cut it out and get sicker - whether discovering more food allergies or other sensitivities. I know they say the gluten allergy is so strong it can mask the other symptoms. I guess I'm not about to go out and eat gluten I know how I react to it but I wonder if there is some component in it that is actually good for the system that we overlook when focusing on how bad it is. I don't know if this makes sense. I have not though it out much. I read this thing I wrote the other day when I first cut it out and my doctor and i thought I had finally founf the answer. Now its 2 -3 years later and I am sicker. I just feel like nothing seems to make any sense anymore.

miamia

Maybe you should get the Lame Advertisement test done, to test for other sensitivies, and chemicals.

Im going to get it as soon as I save up the $$.

Im tired of guessing which foods are good and bad, I want to know what my body is sensitive to.

Rachel-

Sulfur is a compound in a lot of foods, drugs etc. Its everywhere, in our air, water etc.

There is an enzyme system that involves sulfur metabolism. Ive always suspected it as one of the main problems for myself, and also my thyroid problems too.

Hope your brain fog, lifts soon.

Go to the doctors, drag yourself there if you have to, take care of yourself.

p.s. I have not heard of a urine sulfur test. sounds interesting.

I want to get a trace elements alanysis to measure the amount of minerals etc in my blood to see if any are deficent. I wonder if I could get my DR to order it....

[rinne]

Julie, that is wonderful news. I am so happy for you.

Thanks, not well yesterday unfortunately. I was so sick I couldn't even sit up without feeling like I would throw up or pass out. I stayed home from work, and tried to log on here once, but had to shut off the computer before I could even find this thread. The pain level was low yesterday fortunately, but that's probably why I was so sick...I took 2 vicodin before bed and 2 more at midnight...never did get back to sleep, so think that's why I was so sick when I got up at 4:00 yesterday. Didn't want to eat anything, the only thing that sounded good and seemed to settle my stomach were the corn tortillas I had in the freezer, so I had three of those throughout the day plus a little ground meat. BUT, unfortunatley, I think throughout the weekend somewhere I aggravated the tooth that was cracked because it really started to hurt last night, throughout the night and today I can't even eat today because even chewing on the right side, the left hurts too much. They don't want me to take any pain medicine before my appointment today, but I had to take 3 advil this morning...that barely touched the pain. I just have two more hours to go here at work, but not sure I'll even make it that long at this rate. I brought the advil with me so as soon as the doctor is done, I'm popping some, lol.

I'm sorry you have been feeling so ill, how are you today? Have you tried gargling with sea salt?

Rachel,

I'm beginning to think "a little here and there" isn't in your vocabulary.

I have slept for about seven hours the past two nights and when I have woken I have felt refreshed. I don't even know how to express how absolutely amazing this is to me, it's been years since I slept well. I attribute this to the Salt/C treatment I am doing.

I think that when we shifted to preserving our food with sugar and chemicals and stripped salt of its' minerals we shifted our blood balance and turned ourselves into hosts for certain diseases and parasites. I have known for years that regular table salt with iodine added wasn't great health wise and it adds a bitter taste to food when cooked so I have used sea salt but I didn't realize that there were nutritional qualities to salt depending on where the salt came from. I am currently using "Real Salt".

[jerseyangel]

its weird I have been doing alot of thinking and I know that some people cut gluten out and get better and thats it. But it seems like so many people cut it out and get sicker - whether discovering more food allergies or other sensitivities. I know they say the gluten allergy is so strong it can mask the other symptoms. I guess I'm not about to go out and eat gluten I know how I react to it but I wonder if there is some component in it that is actually good for the system that we overlook when focusing on how bad it is. I don't know if this makes sense. I have not though it out much. I read this thing I wrote the other day when I first cut it out and my doctor and i thought I had finally founf the answer. Now its 2 -3 years later and I am sicker. I just feel like nothing seems to make any sense anymore.

miamia

Miamia--

I've had the exact same thought! When I first went gluten-free, I felt better than I had in years. That lasted about 5 months, and then I was back at square one, symptom-wise.

I don't know about a component in gluten that is good for us, but I think there's something to the idea that after the gluten is removed, something else changes (I don't know if that's the right word)? I definately feel "different", in that foods affect me that never used to, and if I try and deviate from the narrow list of "safe" things that I've determined for myself, I feel sick right away. Like my system is hyper sensitive--BUT is calmed by sticking to a rigid diet of meat, veggies and fruit.

Someone asked about Prednisone in another thread--and it's ability to calm the immune system. Years ago, when they didn't know what was wrong with me, I was given Decadron (an injected steroid--lasts for 6 weeks) It's a pretty potent medicine (I didn't know much about it then) and I remember that it made me feel better almost immediately, and I felt better for quite some time after (months)

The point is, not to take steroids, but the idea that maybe some of our immune systems are rendered hyper active after not being given gluten. The next question is, how long does it take for it to settle down on it's own, and what can we do safely to make it happen quicker (like yesterday!)

Gee, a lot of scientificness for 9 AM!

I have to go to the GYN this afternoon Gotta keep track of the fibroid and ask a few questions about these menopause symptoms (I'm burning up here!) Anything interesting, I'll let you know.

Rinne, What is the salt regiman that you're on? Sorry if you already posted it, I've had a pretty foggy week! If you have posted it, just point me to it

Would it be something that a person with high blood could use? Mine is high, but controlled with meds. Thanks!

[miamia]

Miamia--

I've had the exact same thought! When I first went gluten-free, I felt better than I had in years. That lasted about 5 months, and then I was back at square one, symptom-wise.

I don't know about a component in gluten that is good for us, but I think there's something to the idea that after the gluten is removed, something else changes (I don't know if that's the right word)? I definately feel "different", in that foods affect me that never used to, and if I try and deviate from the narrow list of "safe" things that I've determined for myself, I feel sick right away. Like my system is hyper sensitive--BUT is calmed by sticking to a rigid diet of meat, veggies and fruit.

Someone asked about Prednisone in another thread--and it's ability to calm the immune system. Years ago, when they didn't know what was wrong with me, I was given Decadron (an injected steroid--lasts for 6 weeks) It's a pretty potent medicine (I didn't know much about it then) and I remember that it made me feel better almost immediately, and I felt better for quite some time after (months)

The point is, not to take steroids, but the idea that maybe some of our immune systems are rendered hyper active after not being given gluten. The next question is, how long does it take for it to settle down on it's own, and what can we do safely to make it happen quicker (like yesterday!)

Gee, a lot of scientificness for 9 AM!

I have to go to the GYN this afternoon Gotta keep track of the fibroid and ask a few questions about these menopause symptoms (I'm burning up here!) Anything interesting, I'll let you know.

I am so glad you wrote this back. I felt nervous like if I posted anything contrary to going gluten free people would jump at me. I agree completly- Imy body just feels different- hyper-hyper hyper sensitive. I feel like I react to everything. I can't even imaging being able to eat out or even eat anything with more then like 3 ingredients- and thats pushing it. I just feel confused as where to go from here.

Miamia

[jerseyangel]

I am so glad you wrote this back. I felt nervous like if I posted anything contrary to going gluten free people would jump at me. I agree completly- Imy body just feels different- hyper-hyper hyper sensitive. I feel like I react to everything. I can't even imaging being able to eat out or even eat anything with more then like 3 ingredients- and thats pushing it. I just feel confused as where to go from here.

Miamia

Miamia--

I'm right there with you! I'm really glad you posted because it's been in the back of my mind for a long time now.

By putting it "out there", maybe others will have thoughts and something will jump out.

I remember I figured out about the coconut water filters during a discussion here the didn't even start out talking about that!

[Judyin Philly]

Miamia--

I'm right there with you! I'm really glad you posted because it's been in the back of my mind for a long time now.

By putting it "out there", maybe others will have thoughts and something will jump out.

I remember I figured out about the coconut water filters during a discussion here the didn't even start out talking about that!

HI Guys

Patti good luck at the dr's today

glad you 2 are 'thinking outside the box' as i think we figure more and more out when one of us do this.

Patti is your phone working yet?

pretty gloomy her in Media

Judy

[jerseyangel]

Hi Judy

Yep, I have a dial tone this morning--it wasn't there at 11 last night

Pretty gloomy over here, too. I guess we did need the rain, though, Too bad it's supposed to stick around this weekend.

[AndreaB]

We got rain here last night too and we are on the west coast.

Miamia,

I understand your questioning. Question away, that's how we find out about new things. From everything I've read the gluten masks other intolerances.

Rinne,

That's great that the vit c/salt mix is working so well for you!

I have my own question. You all know we went through enterolab and only had the active intolerance (except Micah having malabsorption). My question is why the other intolerances or allergies start? Is it because of damage to the intestines? None of us had ttg elevated, isn't that an indicator of damage to the intestines too. I know malabsorption is. I had a lot of vegetables that were just over the line into low allergy (which I'm still eating). I'm just curious as to why there would be so many. I had the IgG/IgE test.

I really need to scramble some money together to get the kids tested. They still have bumps on their faces that I was told was eczema. It has never looked like the rash I get and have (still hasn't gone away but doesn't bother me). Seth's looked more like I would picture eczema.

Another question. We are told to rotate our foods for more optimal health. How does one do that if their diet is so restricted? Is it really that eating the same foods over and over that get us or that the system is already compromised? My mom thinks we've got the intolerances because of eating so much gluten and soy. I'm mildly allergic to many things which I don't eat frequently. I eat rice pretty much every day and have no problems with it. The high's on my list, asparagus and kidney beans, I didn't eat frequently. The dairy, mid point low I hadn't been eating much for 3 years, goat milk I'd never had but once which I think was after the allergy testing but before the results. I get sneezing and stuffy nose with dairy when I eat it, I don't think I'm quite so bad with the raw cheese. My mom thinks I'm limiting the children's diets too much. How are you going to get calcium? I told her calcium fortified orange juice has as much calcium as milk, plus we have vitamins.

Any thoughts from you wise people out there?

[Rachel--24]

Andrea,

Personally, I dont believe that we become intolerant because of eating too much of one food group. Every living thing pretty much eats the same foods in their diets day after day and you dont see them becoming allergic to everything.

I think it would only be a problem with a food (like gluten) that the immune system is attacking. The resulting damage would then allow other foods to leak in and more immune responses will follow. With a healthy and intact intestinal lining I believe we could eat the same thing every day will no ill effects...unless that food was gluten and the body was reacting to it.

Miamia....you can say whatever you want....thats what we're all doing here....sharing ideas...brainstorming.

This is my third day of having this miserable cold.

I must have had too much fun over the weekend.

I had to drag myself to work today and I'm really glad I toughed it out...I would be so behind at work if I missed today. I'm still trying to catch up from leaving early yesterday.

I'm gonna try to make it to my doctor appt. later today. I hope they got the bloodtest results in by now.

Miamia....didnt you say you were getting your results back a couple days ago?? Was your test for histamines or something else?

I'm not having bad headaches since I stopped eating processed foods...anything processed = mouth blisters, headaches, itching, blurred vision, brain fog, etc. It has to be the sulfites. If the amounts are small it can take up to a week to really start developing symptoms. I'm suspecting sulfites in the meds I've reacted to and probably the supplements too.

Awhile back on another thread (I think Mango's) we were talking about reactions to the anesthetics in the dentist office. I had found out that alot of numbing agents contain sulfites. I had a bad time with the numbing agaent they used on me....my next visit I begged the dentist to not use it on me again...I told him I could do without the numbing but he wouldnt listen. I've read similar stories of people becoming hyper sensitive to sulphites after something like this.

My symptoms started after the dental work and I was wondering if that could have triggered a sensitivity that has worsened with time. I kind of gave up on this theory w/out ever trying the diet so now I'm backtracking and trying to see if this is my problem.

Will keep you guys posted.

[CarlaB]

Andrea, I think rotating helps if you have a minor allergy to a food. For example, I have a minor problem with mold, so mold containing foods like peanut butter and store bought fruit juice are a problem for me, but only when I have them a few days in a row. If I have something with peanut butter, then avoid it for three or four days, I can have it again and not have a problem. I don't think it's the constant eating of a food that causes an allergy, it just allows the symptoms to develop.

[christine 25]

I'm not having bad headaches since I stopped eating processed foods...anything processed = mouth blisters, headaches, itching, blurred vision, brain fog, etc. It has to be the sulfites. If the amounts are small it can take up to a week to really start developing symptoms. I'm suspecting sulfites in the meds I've reacted to and probably the supplements too.

Awhile back on another thread (I think Mango's) we were talking about reactions to the anesthetics in the dentist office. I had found out that alot of numbing agents contain sulfites. I had a bad time with the numbing agaent they used on me....my next visit I begged the dentist to not use it on me again...I told him I could do without the numbing but he wouldnt listen. I've read similar stories of people becoming hyper sensitive to sulphites after something like this.

My symptoms started after the dental work and I was wondering if that could have triggered a sensitivity that has worsened with time. I kind of gave up on this theory w/out ever trying the diet so now I'm backtracking and trying to see if this is my problem.

Will keep you guys posted.

Sounds like you're on to something Rachel.

Do you know what your doctor numbed you with? Mine numbs me with lidocain. I know because I asked.

I had not seen a dentist prior to getting sick,

the supplement I was experimenting with was sulfur based.

It was also high in Bromide, chloride, iodide,

and magnesium and selenium, which all can interfere with copper metablism, and iodine perioxidase=thyroid metablsim, the converstion from t4 to t3 and the body being able to recognize them and assimilate them at the cellular level.

The enzymes are produced in the liver.

I think my body recognized the chemicals as foreign and toxic so my immunity attacked them, also the triggered immune resonse continued when ever I would encounter these minerals, and sulfur etc in nature.

Sulfur and other mins are needed for our internal antioxidant systems to function and filter out preservatives, prevent free radical damage and so on, I think that my antioxidant system is imparied or slow becasue of the chemical mimics I was exposed to.

glutathione peroxidase (a sulfur based enzyme) superoxide dimutase, and selenium, etc are a lot of systems in our bodys that help protect us from sensitivies and reacting to foods, also. Cytochrome P 450 (a detox enzyme)

functions at a set rate, if my antioxidants are imparied at all it may try to compensate and bear the load but it can only function at a set rate, i have read. Something to ponder.

A lot of Alternative health remedies encourage eating foods rich in sulfur for detox protocols. Ive taken all the supplements for detox, including the Garlic pills, Alpha lipoic acid, N-Acetyl cystine (both precursors to the glutithione perioxidase system) is supposed to help as a chelator of heavy metals, chemicals and I would assume some minerals too. And so on...

and they made me feel worse.

Its good to understand the whole body, the immune system, and our internal defenses like antioxidant systems which require certain enzymes to function, that may be impaired, or slowed down.

To understand the whole picture of what is causeing reactions and why cutting out just gluten is not making our symptoms go away so puzzling.

I tested negative for the Celiac Gene, but I have trouble absorbing it and assimilating it. Its an intolerance, but then almost everything I am exposed to including gluten is an "intolerance." Why is that then?

There are some

errors in metabolism in my body, liver, thyroid etc, enzyme pathways, effecting

multipule organ systmes

what they are I have no idea. Yet.

[Green12]

Hi all!

Has anyone heard from Donna? I am VERY worried about her.

Off to read what I have missed, yes, i'm going back ...very scary!