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Omg...i Might Be On To Something


Rachel--24

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dlp252 Apprentice

Hi LittleMiss! It's me (Donna) from the Lyme thread! I was actually going to say that you should come over here, but I thought you might be afraid of the 1900 pages, lol!

Yes a LOT of us here have lyme, and many of us have more than that. I have the big three...lyme, mold toxicity and heavy metal toxicity.


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CarlaB Enthusiast

Hi LMA!

I also responded on the Lyme Disease thread. Sorry I missed your original Lyme Disease post ... I would have answered if I had seen it. :) I've been out of town so hadn't checked anything here but this thread.

Does your doctor also think you have babesia? It sounds like a possibility with the breathing issues and heart palpitations.

Has your doctor tested you for coinfections?

Also, as already mentioned, there are many things that often go along with Lyme .... parasites, metals, etc.

Welcome to the thread!

AndreaB Contributor

Welcome LMA!

I'm one of the few that doesn't have lyme on this thread.

My family has some problems with metals but we've been doing some detox for the last 6-9 months.

rinne Apprentice
I HAVE A DATE WITH THE ORANGE JUG!!!!!!! :D:D:lol:

....

Oh Happy Day.....sung with verve. :) Great news Donna.

And I'm glad to see you have good news too Rachel. :)

Hi everyone-

Hope you all don't mind but I'm kind of intruding your board.......

Nope, we invite intrusions. :)

Sorry to hear how wretched and scared you are feeling, I've been there as I know many others here have too. You are in good company. :) I actually thought that given your description you were able to be remarkably upbeat and thank you for wishing us well.

I am not today, I think that I was seriously glutened over the first three days in the restaurant by beer fumes coming in from the pub next door. I dropped six pounds, feel like I am going to start melting again. Has anyone else had a reaction like that? Yesterday morning I woke up and starting vomiting, at least four hours non-stop and my sweetie was thinking he should take me to the hospital, it was bad. Last night when I was laying in bed I remembered how I felt when I worked in the bakery and it struck me that my reaction was very much like back then, and then it struck me that I had been smelling beer for three days. :huh: Microscopic particles of gluten saturating the air that the fan I was standing in front of was sucking in.

Today I told the owner of the hotel that I would have to close the door between the lobby but even so I could feel myself reacting, I had been in the lobby for about fifteen minutes earlier and I am afraid that that was all it took, mmmmm I may not have a restaurant anymore. :(

On an upbeat note I spoke with someone today who is willing to let me use her commercial kitchen one day a week for $200.00 a month plus she will retail the treats.

I am not caught up, I will most likely not catch up, hello to all. :wub:

jerseyangel Proficient

Oh Rinne, I'm so very sorry to hear about the inhaled gluten :( It would be such a shame if this prevented you from operating your restaurant.

Good news about the commercial kitchen, though.

I hope something can be worked out--I'll be thinking of you :)

AndreaB Contributor
Oh Rinne, I'm so very sorry to hear about the inhaled gluten :( It would be such a shame if this prevented you from operating your restaurant.

Good news about the commercial kitchen, though.

I hope something can be worked out--I'll be thinking of you :)

Ok, I'm being lazy and she said similar to what I would have said.

Guest LittleMissAllergy

Aww I'm so happy to have found you all! You are all so sweet and welcoming...and I can tell that you all are VERY wise as well :) I'm in good company! That makes me feel better just in itself.

Hi LittleMiss! It's me (Donna) from the Lyme thread! I was actually going to say that you should come over here, but I thought you might be afraid of the 1900 pages, lol!

Yes a LOT of us here have lyme, and many of us have more than that. I have the big three...lyme, mold toxicity and heavy metal toxicity.

Hi Donna, glad to find you on this board too! I love how you call what you've got "the big three". I happen to have those issues as well, with some bacteria here and there and a little sprinkle of viruses.

Hi LMA!

I also responded on the Lyme Disease thread. Sorry I missed your original Lyme Disease post ... I would have answered if I had seen it. :) I've been out of town so hadn't checked anything here but this thread.

Does your doctor also think you have babesia? It sounds like a possibility with the breathing issues and heart palpitations.

Has your doctor tested you for coinfections?

Also, as already mentioned, there are many things that often go along with Lyme .... parasites, metals, etc.

Welcome to the thread!

Thanks for the responses everywhere Carla! My doctor does indeed think I have babesia. I actually JUST got a phone call about an hour ago (well my mom did actually, since I can't get out of bed) from my LLMD, and he said that he got one of the lyme tests back, and that it's not the one that tests specifically for lyme, but it tests the white blood cells (I think?, like the celiac disease 50 something? Excuse my uneducated self), and it points SIGNIFICANTLY toward lyme, which I guess means one count was low or something...I don't know. I trust him though, and even though it's a terrible thing to have, at least it's a diagnosis.

And since I'm so unstable right now, he can't start treatment, but he DID send my mom out to Whole Foods to get liquid minerals, DHEA, B-50, and Yucca (???). This makes me VERY nervous though because usually my GI tract reacts HORRIBLY to supplements...and I really don't need one more issue right now...anyone have any experience on that one?

.

Nope, we invite intrusions. :)

Sorry to hear how wretched and scared you are feeling, I've been there as I know many others here have too. You are in good company. :) I actually thought that given your description you were able to be remarkably upbeat and thank you for wishing us well.

I am not today, I think that I was seriously glutened over the first three days in the restaurant by beer fumes coming in from the pub next door. I dropped six pounds, feel like I am going to start melting again. Has anyone else had a reaction like that? Yesterday morning I woke up and starting vomiting, at least four hours non-stop and my sweetie was thinking he should take me to the hospital, it was bad. Last night when I was laying in bed I remembered how I felt when I worked in the bakery and it struck me that my reaction was very much like back then, and then it struck me that I had been smelling beer for three days. :huh: Microscopic particles of gluten saturating the air that the fan I was standing in front of was sucking in.

Hi Rinne, you are so sweet!

I'm sorry to hear that you think you've been glutened though. It sounds really unpleasant. I hope it passes soon!!!


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CarlaB Enthusiast

Hi Little Miss,

It sounds like you are in good hands. I would start the supps one at a time for a few days so you know if you react to one and which one it is. I don't have to do that with supps myself, but I have an iron gut (or so I've been told, LOL). I'm sure Rachel will have something to say about supps and difficulty with them.

Since you mention your mom ... I'm wondering how old you are. :)

Rinne, I hope you are better soon! Could it be the stress that caused the reaction? (just hoping it's not really the beer :()

rinne Apprentice
Ok, I'm being lazy and she said similar to what I would have said.

:lol: Yes, lazy Andrea. :P:lol:

Thanks, I have a feeling it is all going to work out. My friend who agreed to help me needed a job and he has been busy making the place his own, I can see him carrying on without me, which would be great and if I get my commercial kitchen one day a week for now that is perfect.

Also, the woman with the kitchen does catering for special diets, how perfect is that? And it is half a block from the restaurant which is in the area of the city that is really diverse and exciting. It is all good, except for the glutening of course.

And how fair was that? It wasn't a bowl of pasta with gorgonzla, cream and toasted walnuts, it was not a flaky croissant, nor a piece of thin crusted pizza with goat cheese and pesto......I'll stop now. :lol:

AndreaB Contributor
And how fair was that? It wasn't a bowl of pasta with gorgonzla, cream and toasted walnuts, it was not a flaky croissant, nor a piece of thin crusted pizza with goat cheese and pesto......I'll stop now. :lol:

Ggggrrrrr! :lol::lol::lol: No goat cheese please though.

confusedks Enthusiast

Little Miss,

I just wanted to say welcome to the board! :) We're glad you're here. I have Lyme, Babesia, Viruses (LOTS of them, lol) and Mycoplasma. I understand the feeling of being overwhlemed. If you ever want to chat, you can PM me. I'm more than happy to "listen." :D

Guest LittleMissAllergy
Hi Little Miss,

It sounds like you are in good hands. I would start the supps one at a time for a few days so you know if you react to one and which one it is. I don't have to do that with supps myself, but I have an iron gut (or so I've been told, LOL). I'm sure Rachel will have something to say about supps and difficulty with them.

Since you mention your mom ... I'm wondering how old you are. :)

Rinne, I hope you are better soon! Could it be the stress that caused the reaction? (just hoping it's not really the beer :()

I'm 19, which is why it scares me that I feel like a weak 80 year old woman :P

And congratulations on your iron gut. That's impressive considering all of the toxic things in your body!

Little Miss,

I just wanted to say welcome to the board! :) We're glad you're here. I have Lyme, Babesia, Viruses (LOTS of them, lol) and Mycoplasma. I understand the feeling of being overwhlemed. If you ever want to chat, you can PM me. I'm more than happy to "listen." :D

Thank you SO much, I will most definitely take you up on that when I'm a little more energetic. lol. Do you hang out on this board often too? So many great people in one place. So convenient. lol.

CarlaB Enthusiast
I'm 19, which is why it scares me that I feel like a weak 80 year old woman :P

My first Lyme flare that was bad enough to make it so I spent almost all my time in bed was when I was 19. My roommate took me to the ER and the doctor told me not to drink so much alcohol. <_< I had random symptoms prior to that, but nothing that disabling.

I spent the summer at my Mom's and couldn't find a job, so just relaxed in the sun all summer. I also did lots of aerobic exercise classes. By the end of the summer I was in remission. I did not know what was wrong with me, but Lyme didn't cause issues again until 1986, four years later.

It kept coming and going like that until this last time, where it just got worse and worse.

Just a year ago, my 87 year old grandmother got around a lot better than I did. Now, I'm getting around better than her again.

You'll get better .... LLMD's are good at this. :)

Nanjkay Apprentice

Haven't written in a while. Think of all of you often - as I am dealing with many of the same issues. Because of this thread, I stopped eating high oxalate foods and it really cut down on my pain as i have fibromyalgia.

I recently had to stop taking my thyroid meds which I have to take as I have Grave's and then radioactive iodine and am now hypo. I started getting a horrible reaction, anxiety, splitting headache, crying jags, tightness in the chest. After much research I found Dr. Larry Wilson who is doing hair tests on me. I am, I guess, a slow oxidizer and every medicine I attempt to try, I get a toxic reaction. I can do without Nystatin, etc, but I can't do without my thyroid medication. It is a catch 22 and horrible for me. My naturopath etc, had me on T4 and T3, but I can't take T3 at all anymore so I am dealing with a very underactive thyroid for 8 weeks now and have gained 15 lbs which is the least of my worries but still a pain in the you know what.

So, my naturopath tested my copper along with other minerals and metals from blood serum levels and nothing unusual popped up. Do any of you think the copper may still be the problem? I was very discouraged to see nothing but I am still holding out hope for the hair analysis.

In the meantime as I wait for the hair analysis, my naturopath and I discussed the philosophy of only doing treatments to boost my system as opposed to anything to subtract from my system. Any time I try to subtract, like Nystatin OR the h-pylori protocol with Mastica and a charcoal complex activated my IBS-, I get horrible reactions that make me sicker than when I started. The only subtracting that doesn't hurt me is the subtraction of offending foods.

Which leads to another subject. In terms of Candida, has anyone tried the Specific Carbohydrate Diet? I know that when I stay away from starches and sugar (of course, but it is hard) I do feel a lot better energy wise.

I know this posting is all over the place. Sorry!

Nancy

rinne Apprentice
Aww I'm so happy to have found you all! You are all so sweet and welcoming...and I can tell that you all are VERY wise as well :) I'm in good company! That makes me feel better just in itself.

.....

Yes, much healing and wellness has arisen from this joyful company of sufferers sharing scientificness and support. :)

Hi Little Miss,

It sounds like you are in good hands. I would start the supps one at a time for a few days so you know if you react to one and which one it is. I don't have to do that with supps myself, but I have an iron gut (or so I've been told, LOL). I'm sure Rachel will have something to say about supps and difficulty with them.

Since you mention your mom ... I'm wondering how old you are. :)

Rinne, I hope you are better soon! Could it be the stress that caused the reaction? (just hoping it's not really the beer :()

Thanks Carla, stress may have had something to do with it as I put in several long days, too much really but I think more the problem was that those long hours were in an environment that is toxic to me. This morning I was there briefly and starting to lose focus, I felt like I was being drugged.

And Little Miss I'm with Carla on introducing the supplements slowly.

Ggggrrrrr! :lol::lol::lol: No goat cheese please though.

NO, must have goat cheese. :P

.....

Which leads to another subject. In terms of Candida, has anyone tried the Specific Carbohydrate Diet? I know that when I stay away from starches and sugar (of course, but it is hard) I do feel a lot better energy wise.

I know this posting is all over the place. Sorry!

Nancy

Hi Nancy and welcome. :) Coming and going when you are able is fine to do, I do it myself. :ph34r: And as for being all over the place, welcome to that club too. :lol:

I know the Specific Carbohydrate Diet works better for me than other diets, as to the candida I am not sure because I think it includes foods like carrots that wouldn't typically be included in a Candida diet, sorry I don't think I am too helpful.

I am ambivalent about Candida, I know I have a problem but as long as I stay away from sugars it is minimal and Klinghardt has a theory that the body produces Candida to protect itself from the mercury that Lyme bonds with. I am taking the long slow road to healing and trusting that as long as I continue to see improvements I am on the right track. My theory is that with Lyme you have to trick it into submission, I don't think we ever entirely rid ourselves of it, my feeling is our is challenge is to become strong enough that it doesn't interfere.

My concern is that Lyme may already be systemic within our world and that it is only one player in the decline of our health. A diagnosis is one thing, treatment needs to be individual. It is an incredible organism with the ability to mutate within our bodies and hide for years waiting for the right moment of stress to leap free again, just as Carla described.

And part of becoming strong is knowing that you are not alone in what are sometimes desperate moments, believe me we have had a few here and some left us rolling in the aisles, like the time that Floridian fell asleep with a bag of frozen spinach on her stomach, I had suggested a cold pack might help numb the pain, and during the night the bag opened and the spinach came out and when her hubby woke up and rolled over in bed he rolled into it. :o:lol:

Nanjkay Apprentice
Yes, much healing and wellness has arisen from this joyful company of sufferers sharing scientificness and support. :)

Thanks Carla, stress may have had something to do with it as I put in several long days, too much really but I think more the problem was that those long hours were in an environment that is toxic to me. This morning I was there briefly and starting to lose focus, I felt like I was being drugged.

And Little Miss I'm with Carla on introducing the supplements slowly.

NO, must have goat cheese. :P

Hi Nancy and welcome. :) Coming and going when you are able is fine to do, I do it myself. :ph34r: And as for being all over the place, welcome to that club too. :lol:

I know the Specific Carbohydrate Diet works better for me than other diets, as to the candida I am not sure because I think it includes foods like carrots that wouldn't typically be included in a Candida diet, sorry I don't think I am too helpful.

I am ambivalent about Candida, I know I have a problem but as long as I stay away from sugars it is minimal and Klinghardt has a theory that the body produces Candida to protect itself from the mercury that Lyme bonds with. I am taking the long slow road to healing and trusting that as long as I continue to see improvements I am on the right track. My theory is that with Lyme you have to trick it into submission, I don't think we ever entirely rid ourselves of it, my feeling is our is challenge is to become strong enough that it doesn't interfere.

My concern is that Lyme may already be systemic within our world and that it is only one player in the decline of our health. A diagnosis is one thing, treatment needs to be individual. It is an incredible organism with the ability to mutate within our bodies and hide for years waiting for the right moment of stress to leap free again, just as Carla described.

And part of becoming strong is knowing that you are not alone in what are sometimes desperate moments, believe me we have had a few here and some left us rolling in the aisles, like the time that Floridian fell asleep with a bag of frozen spinach on her stomach, I had suggested a cold pack might help numb the pain, and during the night the bag opened and the spinach came out and when her hubby woke up and rolled over in bed he rolled into it. :o:lol:

Thanks so much for the encouragement and words of support. I really need it as we all do. I do feel overwhelmed especially today. I had a consult with my Naturopath last night and we discussed some OTHER things I may have going on - like kidney problems and even though I tested negative for Lyme by Igenex, she thinks I have it anyway and wants to see the blood results again.

I agree, as long as I am feeling a little better everyday, I am on the right track. But I do feel that it is two steps forward, two back sometimes and again, it is all so overwhelming. What i haven't included in my signature are all of my hormone problems, endometriosis (My Gyn wants me to have a hysterectomy it is so bad) and ovarian cysts, so even when I am having good days, once my period comes, that is guaranteed to be about 10 days of bad. And it is approaching, so I get more sad on those days.

I also agree about the Candida. Everyone has it to some degree and trying to get rid of it with Nystatin is too agressive for me right now. I just have to be stricter about sugar. Because, I don't eat nightshades, high oxalates, soy, casein, nuts (except for Almonds), gluten of course and yeast, sugar is one of the only luxuries I would give myself...not even so much for the sugar component, but for the food groups it allows me to eat like dried fruit, sorbet, but I know these are all bad for candida. Maybe I will try re-introducing a food group and take out all of the sugar!!

Thanks so much for writing back. It helps me. I hope I can help you all some day. Sometimes I feel that when I have helped someone, it helps me.

By the way, I don't know how to find this thread all of the time. That is why I only write sporatically.

Nancy

Guest LittleMissAllergy
My first Lyme flare that was bad enough to make it so I spent almost all my time in bed was when I was 19. My roommate took me to the ER and the doctor told me not to drink so much alcohol. <_< I had random symptoms prior to that, but nothing that disabling.

I spent the summer at my Mom's and couldn't find a job, so just relaxed in the sun all summer. I also did lots of aerobic exercise classes. By the end of the summer I was in remission. I did not know what was wrong with me, but Lyme didn't cause issues again until 1986, four years later.

It kept coming and going like that until this last time, where it just got worse and worse.

Just a year ago, my 87 year old grandmother got around a lot better than I did. Now, I'm getting around better than her again.

You'll get better .... LLMD's are good at this. :)

Thanks for sharing that Carla...I feel terrible that you had to feel like this too at 19, and then go through it again, and again...yet I'm kind of relieved because it helps to know that I'm not the only one, and that there's hope!

SO glad to hear that you're movin a little quicker than an 87 year old now ;)

You guys are definitely right about the supplement thing...I'm going to go SUPER slow because for some reason, certain foods and supplements (almost all of them actually...) kinda shut down my digestive system. Just seems to not want to function AT ALL. I suppose it's easily confused (kinda like my brain right now).

Anyone experience an enlarged spleen? How about white spots in their throat? It's so weird how symptoms seem to come in waves, and every wave brings something different. How lucky am I. What pleasant surprises.

OH and before I forget (again), is there a certain diet that you should follow when you have lyme? I know everyone's sensitivities are different but I was wondering if there was perhaps a certain direction I was supposed to go with diet. I eat the same exact thing everyday since I'm so limited, but maybe I'm missing something or you know, doing something wrong...

OH and before I forget (again), is there a certain diet or way of eating that you guys tend to follow, or one should follow with lyme? I eat the same exact foods everyday because they're my "safe" foods, but I know that might have to change based on lyme related needs....

Rachel--24 Collaborator
Rachel, do you still have to make an appointment even if the IV is quick?

Yeah...DMPS by itself is quick but you have to make an appt. for every treatment. They actually prepare all of the IV's (for the day) first thing in the morning.

If you ever need to cancel you need to do it the day before....once they prepare your IV you'll have to pay for it. I think you pay half the cost if you miss your appt.

I did this once because something came up and I REALLY didnt want to go to my appt. :P

I paid the fee and the girls were like "OMG Rachel...why didnt you just call and leave a message?? As long as we get it before morning you wont get charged!"

Yeah but my brain just doesnt think quite that logically...plus I'm a major procrastinator. :rolleyes:

Rachel--24 Collaborator
And how fair was that? It wasn't a bowl of pasta with gorgonzla, cream and toasted walnuts, it was not a flaky croissant, nor a piece of thin crusted pizza with goat cheese and pesto......I'll stop now. :lol:

Its sooo WRONG!! <_<

Rinne...major bummer about the beer fumes. :(

I'm glad you have other options though....the kitchen sounds like it would work well for you. :)

I hope you recover quickly!! :wub:

Stupid gluteney beer fumes! :angry:

Rachel--24 Collaborator
Sorry to invade your board and sound so whiny and be such a downer <_< I'm just scared and my brain is going in a million directions

Welcome!

We're glad you found us! This thread exists only because so many of us have felt exactly like you're feeling and have found comfort here....and knowing that we're not alone. :)

My brain goes in a million directions too ;) ....I think maybe I was born that way though. :lol:

Rachel--24 Collaborator
So, my naturopath tested my copper along with other minerals and metals from blood serum levels and nothing unusual popped up. Do any of you think the copper may still be the problem? I was very discouraged to see nothing but I am still holding out hope for the hair analysis.

I had a red blood cell test for copper levels...I think it might be a little more accurate but since you're getting the hair analysis that should also give you an idea.

Metals wont necessarily show up in blood. For mercury a blood test is pretty useless and it doesnt usually show up in the hair analysis either. A person can be extremely toxic from mercury and there is usually no evidence of it in these tests.

You can tell if mercury is a problem by looking at the essential minerals in the hair analysis. If alot of them are out of balance its an indication of mercury toxicity.

In terms of Candida, has anyone tried the Specific Carbohydrate Diet? I know that when I stay away from starches and sugar (of course, but it is hard) I do feel a lot better energy wise.

I do feel better off of starches but I have worse reactions to many of the allowed foods on the SCD. I did not do well on that diet....it was just all wrong for me. :(

rinne Apprentice
Thanks so much for the encouragement and words of support. I really need it as we all do. I do feel overwhelmed especially today. I had a consult with my Naturopath last night and we discussed some OTHER things I may have going on - like kidney problems and even though I tested negative for Lyme by Igenex, she thinks I have it anyway and wants to see the blood results again.

I agree, as long as I am feeling a little better everyday, I am on the right track. But I do feel that it is two steps forward, two back sometimes and again, it is all so overwhelming. What i haven't included in my signature are all of my hormone problems, endometriosis (My Gyn wants me to have a hysterectomy it is so bad) and ovarian cysts, so even when I am having good days, once my period comes, that is guaranteed to be about 10 days of bad. And it is approaching, so I get more sad on those days.

I also agree about the Candida. Everyone has it to some degree and trying to get rid of it with Nystatin is too agressive for me right now. I just have to be stricter about sugar. Because, I don't eat nightshades, high oxalates, soy, casein, nuts (except for Almonds), gluten of course and yeast, sugar is one of the only luxuries I would give myself...not even so much for the sugar component, but for the food groups it allows me to eat like dried fruit, sorbet, but I know these are all bad for candida. Maybe I will try re-introducing a food group and take out all of the sugar!!

Thanks so much for writing back. It helps me. I hope I can help you all some day. Sometimes I feel that when I have helped someone, it helps me.

By the way, I don't know how to find this thread all of the time. That is why I only write sporatically.

Nancy

:) I think the Specific Carbohydrate Diet allows honey, I make fresh ginger tea with a little honey and it helps my cravings for sweet things.

I agree with you about the two steps forward and then back again, sometimes it seems like three steps back. :( A year and some ago I spent most of my time horizontal because of the pain, a good day was doing the laundry or making a pot of soup. I know I over did the first three days at the restaurant this week but a year ago that would have been impossible.

I think there can be a set of circumstances that tips us so seriously toward illness that it appears as an uncontrollable slide but that through changing our lives in all the ways we have to to set our health as a priority we can change the direction we are going and move towards wellness. To do so, depending on how ill we are, may take time and it may seem that we will never be well but we have to have confidence in our bodies resilience and our true desire for life.

.....

OH and before I forget (again), is there a certain diet or way of eating that you guys tend to follow, or one should follow with lyme? I eat the same exact foods everyday because they're my "safe" foods, but I know that might have to change based on lyme related needs....

The general consensus is a diet high in protein is helpful, our scientific Rachel may answer with more information, also obviously one that avoids sugars, processed foods, etc.

Its sooo WRONG!! <_<

Rinne...major bummer about the beer fumes. :(

I'm glad you have other options though....the kitchen sounds like it would work well for you. :)

I hope you recover quickly!! :wub:

Stupid gluteney beer fumes! :angry:

Thanks Rachel. :wub:

You know I found the :wub: sign a little funny to use on a board, being Canadian we tend to be somewhat reticent about showing our feelings. :ph34r::lol: But I just realized it really is not the love you get, who wrote that song? it is the love you give and everytime I tell you I :wub: you my heart is warmed.

I consider it a strong message to the Lyme bugs who love the cold (did you know that Lyme has the ability to lower a person's blood temperature?) that there is no place for them here.

I agree, stupid beer fumes. :lol:

Rachel--24 Collaborator
It's so weird how symptoms seem to come in waves, and every wave brings something different. How lucky am I. What pleasant surprises.

Yeah...lots of pleasant surprises. :rolleyes:

I actually dont get too many surprises these days...its just the same crappy symptoms. :rolleyes: I think at some point I ran out of "new" symptoms...I think I've pretty much had them all by now. Its been a blast these past 5 years! :P

I eat the same exact thing everyday since I'm so limited

I eat the same exact foods everyday because they're my "safe" foods

OMG...are you my twin?? :blink:

I eat beef and peas....EVERYDAY.

Told you its been a blast. :lol:

Rachel--24 Collaborator
The general consensus is a diet high in protein is helpful, our scientific Rachel may answer with more information, also obviously one that avoids sugars, processed foods, etc.

:lol::lol: Check my previous post..

I eat beef and peas....EVERYDAY.

Sorry for the lack of scientificness tonight. :ph34r::lol:

But yes....now that you mention it....protein (as in animal protein) is very helpful and provides the amino acid chains which are essential for detoxing heavy metals and other toxins from the body. Hence all the beef I eat...EVERYDAY. :lol:

Green12 Enthusiast

Hi rinne, what a treat to check in and see so many posts from you :D

So sorry to hear you have had such a terrible reaction, I hope you get back to feeling like yourself very soon!

Welcome Little Miss Allergy, looks like everyone covered your questions pretty good. And don't feel you are intruding please jump in.

Like Rachel said most everyone in this thread is going through or has been through the same (or variations of the same) thing you are going through.

Lots of good people here, and good info.

Hi and welcome to Nancy too :)

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    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
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