Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,907
    • Most Online (within 30 mins)
      7,748

    Lori4050
    Newest Member
    Lori4050
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.