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Omg...i Might Be On To Something


Rachel--24

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miamia Rookie

just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins


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confusedks Enthusiast
just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

:lol: Good for you! :)

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

CarlaB Enthusiast
true...it wasn't a provoked urine test, was it? because i don't think that's the best idea if i'm having detox issues, but i've heard that the mineral levels or something from the hair analysis can be the big clue

Yes, it was a provoked urine test. Rachel would be the one to answer this .... she had to wait to do her provoked urine test.

just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

And, how have you been doing with these foods?

Random question: anyone have a hard time swallowing?

No, but I've seen people mention it on LN.

AndreaB Contributor
just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

So how are you doing with it? You're not looney bins if your handling it. :)

miamia Rookie

im actually handling some of the foods its crazy I went from being able to tolerate nothing to being able to tolerate weird stuff but I am still uncomfortable but the thing is no more form these foods than really safe foods so I kind of figure why not go for it

Guest LittleMissAllergy
:lol: Good for you! :)

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

Hi Kassandra...I do have a lot of problems with my throat, if it makes you feel any better. I know it just sometimes helps to hear that your symptoms are somewhat "normal" (normal...whatever that means lol). For me, it usually affects my breathing more than my swallowing. Are you having breathing difficulties?

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

I just feel soooo weird, and it's giving me this weird anxious feeling. I have this strange tingly, dizzy feeling in my head and I feel weak and shaky and out of breath, and the left side of my face feels weird. It comes in waves and I go from nauseated to starving in seconds. My whole body just gets these weird feelings and I get all freaked out...

Anyone ever experience ANY of that? Sound like a herx?

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

Hope everyone is well.... <3

tabasco32 Apprentice
Hi Kassandra...I do have a lot of problems with my throat, if it makes you feel any better. I know it just sometimes helps to hear that your symptoms are somewhat "normal" (normal...whatever that means lol). For me, it usually affects my breathing more than my swallowing. Are you having breathing difficulties?

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

I just feel soooo weird, and it's giving me this weird anxious feeling. I have this strange tingly, dizzy feeling in my head and I feel weak and shaky and out of breath, and the left side of my face feels weird. It comes in waves and I go from nauseated to starving in seconds. My whole body just gets these weird feelings and I get all freaked out...

Anyone ever experience ANY of that? Sound like a herx?

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

Hope everyone is well.... <3

All of what you said has been happening to me these past few weeks. Very anxious like I want to get to the end of a large book or something. WHat is this feeling anyway? Especially at night before bed.


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confusedks Enthusiast
Hi Kassandra...I do have a lot of problems with my throat, if it makes you feel any better. I know it just sometimes helps to hear that your symptoms are somewhat "normal" (normal...whatever that means lol). For me, it usually affects my breathing more than my swallowing. Are you having breathing difficulties?

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

I just feel soooo weird, and it's giving me this weird anxious feeling. I have this strange tingly, dizzy feeling in my head and I feel weak and shaky and out of breath, and the left side of my face feels weird. It comes in waves and I go from nauseated to starving in seconds. My whole body just gets these weird feelings and I get all freaked out...

Anyone ever experience ANY of that? Sound like a herx?

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

Yea, breathing is hard. Apparently it's air hunger though. I asked my LLMD about asthma and he said that it probably isn't asthma, it's probably bad air hunger because we lowered the dose of my mepron.

You can definitely herx after a couple days. Some people it takes longer, but some people it takes only a couple days. When I started flagyl last week, I started herxing REALLY hard the next day! So...it's possible.

And the nausea then starving thing...I totally get that too! I can go from "move out of my way I'm going to puke" to "move out of my way, I need to eat all the food in the fridge" in two seconds! It's really hard to deal with that, because I get really hungry, then I don't think I need to bring food with me if I'm going somewhere, but then I'm SO hungry. Very frustrating indeed. ;)

ShadowSwallow Newbie

Dr's appointment and support group meeting today. I should be sending out an email soon. :)

:wub: Birdy

AndreaB Contributor

I'll be looking forward to it Birdy. :)

Guest LittleMissAllergy
Yea, breathing is hard. Apparently it's air hunger though. I asked my LLMD about asthma and he said that it probably isn't asthma, it's probably bad air hunger because we lowered the dose of my mepron.

You can definitely herx after a couple days. Some people it takes longer, but some people it takes only a couple days. When I started flagyl last week, I started herxing REALLY hard the next day! So...it's possible.

And the nausea then starving thing...I totally get that too! I can go from "move out of my way I'm going to puke" to "move out of my way, I need to eat all the food in the fridge" in two seconds! It's really hard to deal with that, because I get really hungry, then I don't think I need to bring food with me if I'm going somewhere, but then I'm SO hungry. Very frustrating indeed. ;)

My LLMD told me I was having "air hunger" too! It's not very fun, is it? I'm sorry that's what you're dealing with right now. That's one of my least favorite symptoms (hmm perhaps "favorite" wasn't the right word...) because you can't do anything about it. I considered the asthma/inhaler idea as well, because I was diagnosed with "asthma" when I was little, but I brought this up with my LLMD and he almost laughed. He said it's definitely not asthma, and he's definitely not letting me inhale a steroid lol.

Oh gosh I remember flagyl...that was the roughest thing I've ever been on. I didn't know I had lyme when I took it back then...so I had no idea what was happening to me. Are you still on it? I'm going to guess that you are, since you're experiencing air hunger (though I do get that when I'm not in a flare sometimes).

Yea these stomach issues are SO weird. It feels like someone pumped some air in there and it's moving around like crazy, kind of like the same feeling you'd get when you're starving...then I'm nauseated, then it starts cramping like crazy. It's hard not to get all anxiety ridden about it. I think lyme is making me a hypochondriac. lol. I'm sitting here thinking I have a stomach ulcer or that my swollen spleen is going to burst. Ugh. Lyme is SO weird.

Moonstone Newbie

Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I am gluten intolerant and chemically sensitive, (although my official dx is crohn's disease), and I am trying to find any info from people who have tried the ketotifen, what their experience with it has been. Did it help you at all? Did you find it to have any major side effects?

What a wonderful site, I wish I had found it sooner! I've sure enjoyed reading as many posts as I could this evening!

AndreaB Contributor

Welcome Moonstone! :D

You are in the right place.

I don't have any answers for you on the ketotifen though.

mftnchn Explorer
Sherry, how did you fare with the earthquake?

Hey, everyone, I'm fine and thanks for thinking of me. I am quite far away from the area and didn't feel anything. I do have good friends in the area, but heard from them and they are fine too. We are all very grateful. The news is horrible.

Sherry

mftnchn Explorer
:lol: Good for you! :)

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

Yes, I have that. Dr. E had me doing laser on it, but I haven't since I got back to China. Need to remember to do that.

Sherry

mftnchn Explorer

Welcome Moonstone. You are in the right place. I don't know about the K...haven't tried that.

Sherry

rinne Apprentice

Hi all, I can't keep up :( but I am thinking of you all. :)

I sold my first rinne bar from my restaurant yesterday, wahoo!!! I am working seven days a week, six hours a day behind the grill, doing all the cooking, shopping and cleaning. I need help! Let me be specific, I need good help that shows up and pays attention. :lol:

I am not yet marketing from the gluten and dairy free angle but will once I get the place tuned up a little more. I've decided I just have to make it my kitchen, a place I love to be and a place where friends and friends to be (perhaps) may come by, eat good food and visit. I am told I make a great burger but I haven't tasted one, I am not ready to experiment with gluten unlike that wild child :ph34r: Miamia. :lol:

I am so happy for you Miamia, I hope your health continues to improve. Mine has and I credit this board with supporting that, not just through the obvious and very important scientificness (much thanks to Rachel) but through our collective spirit which I know to be healing.

For those of you who don't know me, it has been just over five years now since the tick bite and rash, for the first two years the pain migrated round my body manifesting in different ways and then my digestive system crashed and I melted and lost 40 pounds. Since then I have decided that after fifty a little fat is our friend. :lol: Then I spent the best part of two years horizontal, in pain and distress. I would say on a scale of 1 - 10, 1 being the least and 10 the worst, most of that time was around an 8. This past year I have seen improvements and though I wouldn't say that I have completely recovered I know now that my health has returned, I have stamina again.

I never went the ABX route.

Off to restaurant world, enjoy the day.

:wub:

CarlaB Enthusiast

Rinne, woohoo!

Well everyone...I think I might be experiencing my first herx. Can that happen after only 4 days of Biaxin (only 2 days at full dose...and no doxy yet!)?

Four days is a very common point to herx from a new med. It seems to be the magic number .... many on LN mention 4 days, and the past couple meds I've been on caused me to herx at exactly four days.

My LLMD told me I was having "air hunger" too! It's not very fun, is it?

No, I hate it. It's from babesia ..... were you diagnosed with babs? Babs treatment is what helps it clear up. I had a little shortness of breath that cleared with bartonella treatment, but the severe air hunger went away with babs treatment.

Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I am gluten intolerant and chemically sensitive, (although my official dx is crohn's disease), and I am trying to find any info from people who have tried the ketotifen, what their experience with it has been. Did it help you at all? Did you find it to have any major side effects?

What a wonderful site, I wish I had found it sooner! I've sure enjoyed reading as many posts as I could this evening!

Welcome! Sorry, I don't know anything about the med.

Hey, everyone, I'm fine and thanks for thinking of me. I am quite far away from the area and didn't feel anything. I do have good friends in the area, but heard from them and they are fine too. We are all very grateful. The news is horrible.

Sherry

Glad to hear you and your friends are fine. :)

confused Community Regular

Rinne,

Im glad things are going so well for you. How exciting to sell your first rinne bar, did you frame the money you got from it or an pic of the person that bought it.

Everyone,

Im just reading along. Im kinda in an weird place right now. I have no idea why tho. Maybe once I get my hair test back, I can think more clearly.

I am having sinus problems and Gi problems that are driving me completly crazy. MY sotmach feels like their are rocks that are stuck and that need to come out lol. I think it is time I make that juice that sherry posted and see if that helps.

I am going to get the spray stuff for the boiler room by the end of the week and going to get all that mold killed. I am also going to call somone to come and deep clean the whole house from top to bottom. Im thinking there might be a collection of dust and junk on top of the cabinets in the kitchen that are to blame for some of my issues. But everytime i stand up there in the last few years, I feel off the cabinets, so I dont want to check lol.

paula

CarlaB Enthusiast
Im thinking there might be a collection of dust and junk on top of the cabinets in the kitchen that are to blame for some of my issues. But everytime i stand up there in the last few years, I feel off the cabinets, so I dont want to check lol.

It could be part of it anyway. Dust is terrible to me! I dust the top of my cabinets, doors, baseboards, under the sofa, etc. every other week!

confused Community Regular
It could be part of it anyway. Dust is terrible to me! I dust the top of my cabinets, doors, baseboards, under the sofa, etc. every other week!

I never thought of doors and baseboards. I sweep and mopunder sofas every day. I have 5 kids that like to put stuff under them lol. I use to think i was an clean freak, but now im thinking im not as clean as i should be lol.

Carla, were do you find the energy to clean all these things all the time.Oris easier for you cause your kids are older then mine lol

paula

rinne Apprentice

Thanks for the wahoos. :)

Rinne,

Im glad things are going so well for you. How exciting to sell your first rinne bar, did you frame the money you got from it or an pic of the person that bought it.

.....

Thanks Paula, no I didn't but perhaps I should have, the first dollars of the millions I expect to make. :lol: A friend bought it and pronounced it awesome so I could always take a photo later.

Okay, now I am really gone. :)

CarlaB Enthusiast

We have a division of labor. :D Each child is in charge of a room. I have a duster with a long handle so each of them can reach above the doors for their respective room. I check each room. I'll send them back if something is still dirty on cleaning day. I clean parts of the room the youngest is in charge of.

That leaves me with the kitchen. I stand on a tall stool with the duster to get the tops of the cabinets .... sometimes on the counters. I actually do the kitchen weekly (but not hte tops of the cabinets). The kids have to thoroughly clean their "room" every other week, but have to keep it picked up (trash, etc.) all the time. On the off week their bedrooms get the thorough cleaning.

When I was really ill, I either had to beg someone else to do the kitchen or it just didn't get done.

My bedroom would sometimes go weeks without getting cleaned, then I'd have kids and hubby do it. But now, I can always muster up the energy to clean it.

So, basically, everything gets really cleaned every other week, and a light cleaning on the off week.

I could not keep up with this by myself, though I used to before I was ill. Except the kids' rooms, they've always been in charge of their own rooms.

ShadowSwallow Newbie

I just sent out the email. Just PM me if you want it and didn't get it. :)

dlp252 Apprentice
just to freak everyone out these are some of the foods I ahve been experimenting with-

`pizza, mac and cheese, mconalds cheeseburgers, starbucks frapaccinos, uhhhhhh... I think ive gone loony bins

:o:o:o AMAZING!!!! :D

Random question: anyone have a hard time swallowing? It's like my throat doesn't like food. :P It is like there is a lump in my throat...strange.

Yeah, I do, but not necessarily with food...it CAN be with food, but I can also just be sitting here and not be able to swallow.

The thing that's so very confusing is my stomach...I know we've talked about bloating on here (hehe) so I've mentioned that I'm always bloated, and NEVER hungry...but now I have this horrible hunger pain that I can't really satisfy. Anyone ever get this?

I get the terrible hunger pain thing...usually happens in the middle of the night for me though. But yeah, I can be completely fine and then all of a sudden it's like extreme hunger. That's one reason why I eat so frequently.

Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I know someone here has talked about ketotifen, but I can't remember now who it is.

I sold my first rinne bar from my restaurant yesterday, wahoo!!! I am working seven days a week, six hours a day behind the grill, doing all the cooking, shopping and cleaning. I need help! Let me be specific, I need good help that shows up and pays attention. :lol:

YAY!!!!!! HOW exciting!!!!

Im just reading along. Im kinda in an weird place right now. I have no idea why tho. Maybe once I get my hair test back, I can think more clearly.

I was there a few weeks ago. Very strange place indeed!

I just sent out the email. Just PM me if you want it and didn't get it. :)

I'll PM you my email address.

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The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
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