Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Help Celiac.com:
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

rinne Apprentice
Don't feel like an idiot! I KNEW that Lyme is a clinical diagnosis and ordered the tests anyway. I don't know that they could clinically diagnose me though since I didn't have the rash?? I wonder. I haven't even talked with my doctor about it yet and don't know if she is educated on Lyme at all. It would be nice if the test results were clear ... but so far no test result except for dietary response and Enterolab has been clear on anything I've been tested for. Apparently I'm a very healthy individual. <_<

Since only about half of Lyme patients get a rash it is not critical to a clinical diagnosis. The key as I understand is having a LLMD who can read the tests accurately but I also understand that there are a number of people on the Lyme boards who can help with the results. Also my friend with Lyme says Dr. Nick Harris who runs IgneneX is very helpful and that she has talked to him about her results, they don't say anything on the site that would indicate that but you may want to try that if your doctor doesn't understand the tests or if your doctor says there is no sign of Lyme. I would be very surprised if you don't have it.

No, it's been here for about a year .... :lol::(:lol::(

:lol: It hurts to laugh. :lol:

Welcome Amy, brave woman that you are.

Thanks Andrea, I have to stop and remind myself that I can stop.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
happygirl Collaborator

x

Link to comment
Share on other sites
AndreaB Contributor

We're here for you Laura! :)

Link to comment
Share on other sites
jerseyangel Proficient

[Laura,

I'm so sorry that you're having to go through this :( I hope it's not going to be too rough on you--you'll be in my thoughts the whole time.

Keep in touch as you can, you are in my prayers :)

Link to comment
Share on other sites
Rachel--24 Collaborator
Hello, can I come in? :)

I'm Amy, a celiac with horrific msg sensitivities. I still haven't had time to read this whole thread and I don't know if everybody is still talking about msg, but I've been directed here to ask my questions!

My boys all have celiac disease, too, but none of them have shown the violent reaction to msg. Still Dh and I want them to be msg-free if possible. We're horrified that the FDA sees no harm in spraying all our produce with MSG. Shocked. We think it is very scary that our little boys are the first generation to grow up with nearly 100% of their food treated with MSG. We don't want to be part of this experiment :huh:

Anyway the question: I get the impression that cornstarch and tapioca starch are extremely bad for people with MSG sensitivities. They contain natural msg (?) . My boys don't have any bad reactions to Bob's Red Mill tapioca or cornstarch, and I use these in Bette Hagman's mix recipes all the time. Is this MSG naturally occuring and 'safe' for my boys? Or is MSG used in the production or added to cornstarch, thus making them unsafe.

I'm figuring out the other stuff, but I'm very confused about the cornstarch and tapioca. "I" can avoid it for myself but I don't want to remove it from the boys' diet unless I need to.

Thanks for any help! If I live long enough, I may find time to read the rest of this thread and learn something LOL

Amy

Hi Amy,

Yeah...as others have said...you are very brave to go back into this epic thread. :lol:

I think there was quite alot of pages concentrating on MSG more near the beginning of the thread.....maybe you have found them?? :huh: It astonishes me when someone is able to find something in the thread :o but also it pleases me because that is why its all here to begin with. :D

Tapioca and cornstarch seemed to be heavily avoided by those with MSG sensitivities on the MSG message board. Yes, they are high in natural glutamates so corn and tapioca are used for making MSG. They are cheap, readily available and contain high amounts of natural glutamate. They are not dangerous until they are processed into the "bad" MSG and no food containing high amounts of "natural" glutamate is dangerous.....unless you are highly reactive to all MSG.

In a nutshell tapioca, corn, tomato and any other food high in natural occurring glutamates are safe for your boys. :)

Do you react to tapioca starch or corn starch? I do....but in my research and "experiements" (yes, I would sometimes make myself sick for the sake of scientificness :ph34r: ) I determined that it was more likely a reaction to sulfites.....which are also present in these foods.

Basically after all is said and done I'm pretty much intolerant to just about every chemical....man-made or natural occurring....but particularly Sulfites and Sulfur foods.

I know I would react to MSG because its a nasty neurotoxin but I dont eat processed foods or anything that is pure MSG....so I've never "proven" that I react....I just know that I react to everything toxic. Since most foods containing MSG also contain sulfites it was dificult for me to make a determination about that. I eat organic popcorn (popped myself) everyday and dont have a problem with it so I dont seem to have a problem with natural glutamate. I do, on the other hand, have problems with Sulfur foods....eggs, garlic, onion, cabbage, etc...I cant eat any of them. :(

I recently had a test done to find out all the "problem" areas in my body. Yup....I have ALOT of problem areas....enough to make the Dr. look at me, sigh and just shake his head. :unsure:

The test was some kind of alternative hocus-pocus voo-doo type test. I didnt understand much about it and wasnt too convinced about how legit it was. I'm someone who needs to understand exactly how and why something works.

The test seemed to "nail" all my problem areas....saying that I had a problem with my detox pathways....especially my sulfur pathway. The test said I could not process or utilize sulfur....basically my body had become sensitized to it...along with a gazillion other things. All my detox pathways are blocked....so now nothing "bad gets out and my body just accumulates toxins and as I result I got chemically sensitive. :(

The test didnt show a problem with "natural" glutamates....probably why I can eat my popocorn everyday and not have a problem. :) Its the only corn product I can eat though. I react to all molds and corn is the moldiest of all grains.

I DO react to MSG though....it showed up on the test along with Sulfites, Aspartame, all the other artificial sweeteners and bad stuff they put in our foods. Its because my body is unable to detox. I get horrible reactions to Aspartame....havent even touched the stuff in over 3 years.

I react to the Auxigro in produce. I'm asuming its Auxigro anyway. <_<

Right now I eat potatoes...which are one of the foods that farmers have been using Auxigro on for a long time. Its a crapshoot...I buy a bunch and if I can eat one and get no reaction...I know I can eat all of them. Twice in the past 2 months I have been unlucky. If I eat the first potato and react...I know that all of the potatoes in that batch will cause the same reaction. I eat all the potatoes regardless....mainly cuz I get hungry but also because I feel the need to prove to myself over and over again that this is really happening. That there is *something* in these potatoes that arent in other potatoes. :unsure:

So yeah....I guess I still experiment a little. :rolleyes:

The grower to really watch out for is Cal-Organic....they are also Grimmway farms (carrots). One time I bought bagged potatoes (Cal-Organic). OMG....this was my first experience I think with Auxigro'd potatoes. Its the same reaction I get now when I get a bad bunch. I think they are coming from Cal-Organic. That would be my best guess.

Anyways I think when we start reacting to stuff like this its because *something* isnt working right in our bodies. A detox pathway or some mechanism that is needed for breaking this stuff down and getting rid of it is just not working right. As a result we reach toxic levels fairly quickly. If MSG isnt getting processed correctly our thresholds would be reached at much smaller amounts than that of someone whos body IS able to process it and eliminate it. Thats my theory anyway. <_<

I'm still learning all this stuff.

Link to comment
Share on other sites
Rachel--24 Collaborator

I sent my post before I was done. <_<

Anyways, I go to this voo-doo lady twice a week now (I just started last week). She is the one who identified all these problems and she is suppossed to be the best in this country for helping people with chemical sensitivity. I will see her today and I think I will specifically ask her about MSG reactions and if it can be reversed and what exactly causes the problem to begin with.

Anyways I was sceptikal of all this in the beginning cuz I dont understand it all but she seems really good at what she does. I let her do her hocus pocus magic on me and I have a good feeling about it. Its actually something to do with electromagnetic fields and she has some state of the art computer and the testing is all done electronically. She also diagnosed Lyme Disease which actual lab results had already come back positive for. Her test is more sensitive so she picked up other infections that can occur with Lyme Disease. I'm now getting lab tested for those Lyme co-infections. It will be interesting to see how closely they match with her results.

She is de-sensitizing my immune system to all these things its started reacting to. I'm thinking when all is said and done I shouldnt react the way I do now. I probably wont react to Auxigro anymore....I hope not anyway....like I said....you've given me something to ask her about today. I will report back later. :)

All-My food challenge starts after work---today is my last day of work full time. I am frantically trying to finish up and then go home to start the eating. Sniffle.

Laura,

I'm keeping my fingers and toes crossed. ;)

Oh....my computer is finally showing your new pic. I didnt hit F5 yesterday so I couldnt see it. You both look beautiful....its a lovely pic. :)

I was going to ask if you were home but it sounds like your at your mom's. We are all here for you. This is one of those pillows Rinne was talking about (I think).

Yeah....pillows. :D

For me its gonna be all pillows from here on out....no rocks for me. ;)

Yeah....I'm at my Mom's now. I had to come this way for my Dr. appt. yesterday. Dave met me there. I actually got myself half ready for work this morning but then decided to stay home. :ph34r:

Link to comment
Share on other sites
rinne Apprentice

Just to add to Rachel's excellent scientificness that MSG is an excito-toxin which affects the cortex of the brain and your central nervous system, basically it changes you so that you want to eat the food. It is linked to obesity and alhzeimer's and numerous other problems and recent studies shows that it has a negative impact on perhaps 40% of the poplulation. About 15 years ago when I quit consuming anything with it in it I did research it and found that at that time they were saying it affected only 10% of the population negatively. The important thing to understand is that it affects everyone but only some are aware of how they are affected by it.

Rachel, you with your voodoo doctor and me with my intergalactic vibrating machine. :lol:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
The important thing to understand is that it affects everyone but only some are aware of how they are affected by it.

Yeah....it will affect everyone but at different doses. Some can tolerate more than others before reacting to it...but at some dose....everyone will react to MSG. MSG=poison. :angry:

Amy,

I have much info. on MSG....lots of links...I'll post them if you'd like.

I saw your thread about MSG this morning so I know you've done your homework and have visited the MsgMyths site. I still have a ton of links bookmarked though. :)

Rachel, you with your voodoo doctor and me with my intergalactic vibrating machine. :lol:

:lol::lol:

That just cracks me up!!

Link to comment
Share on other sites
AndreaB Contributor
Rachel, you with your voodoo doctor and me with my intergalactic vibrating machine. :lol:

:lol::lol:

Link to comment
Share on other sites
Rachel--24 Collaborator

A link about Lyme and co-infections.

Open Original Shared Link

I did a search on Lyme Disease & Sugar :ph34r:

Link to comment
Share on other sites
rinne Apprentice
:lol::lol::ph34r::P
Link to comment
Share on other sites
rinne Apprentice
One thing you can do now to help yourself is avoid sugar--even sugary fruits. The Lyme bacteria love sugar and that causes them to be active for five hours after you eat it.

Open Original Shared Link

I have a sugar problem too Rachel, :ph34r: and it has been hard lately to stay away from my home made banana ice cream, no dairy, no soy, no gluten with just a little maple syrup and just a little chocolate with only a little sugar in it but after reading that I am making the Lyme happy for FIVE hours I will just figure that into my desire for sweets. All my littles don't seem little when I add them up. :lol:

I know I will stand in front of the fridge going Happy Lyme, Healthy Rhonda, Happy Lyme, Healthy.... I'm betting the Lyme will still get happy sometimes but their party days are OVER.

Link to comment
Share on other sites
AndreaB Contributor

Oh my. :ph34r:

Hopefully you'll be able to eat more foods soon and be able to quit the ice cream.

I know I will stand in front of the fridge going Happy Lyme, Healthy Rhonda, Happy Lyme, Healthy.... I'm betting the Lyme will still get happy sometimes but their party days are OVER.

:P Hooray for the end of the party. :lol:

Link to comment
Share on other sites
Rachel--24 Collaborator
I have a sugar problem too Rachel, :ph34r: and it has been hard lately to stay away from my home made banana ice cream, no dairy, no soy, no gluten with just a little maple syrup and just a little chocolate with only a little sugar in it but after reading that I am making the Lyme happy for FIVE hours I will just figure that into my desire for sweets. All my littles don't seem little when I add them up. :lol:

Rinne.....I really dont crave sugar at all though. I never had a problem eliminating it. Last year I just stopped eating when I went on my strict candida diet. I never even had a single fruit for 4 months. No sugar at all and it didnt bother me. I craved stuff like mac and cheese but not sugar. I seriously would stare at the box of mac and cheese in the cupboard as if it were a drug. Maybe it was the gluten?? Maybe the cheese?? It was kraft...which is the cheesiest ya know. ;)

I dunno...my whole life I wasnt too much into sugary treats or candy....mostly I craved the baked goods and BREAD. I didnt eat much ice cream either. I would gladly trade my ice cream to be able to have bread and butter. I dont care about sugar I just want to eat something that will keep some weight on me like the ice cream does. Thats why I tried to make my own w/out sugar but I reacted to it. Maybe I should try again with a different brand of milk and cream. <_<

The fats arent good either but I dont know what else I can eat right now. Hopefully the BioSET lady can have me eating more foods soon.

This is what I eat. Organic grass-fed Beef, organic popcorn kernals, organic ice cream, organic potatoes, organic unsweetened applesauce and organic apples. Thats it. If I give up the ice cream now wont I lose alot of weight??? :unsure:

I just wanna eat stuff that I dont react to....I honestly have no problem giving up sugar. I've done it lots of times and it has no affect on me. <_<

Link to comment
Share on other sites
Rachel--24 Collaborator

Oh.....I would also totally trade my ice cream in for Tostitos with nacho cheese or guacamole. This is the type of foods I snacked on before I got sick. It was all about breads, pastas and salty foods.....not so much sugar though.

Link to comment
Share on other sites
jerseyangel Proficient

I just got my results of the gene testing from Enterolab.

I have one Celiac gene--HLA-DQ2, and one gluten sensitive gene--DQ1

It says that 'having two copies means that there is a stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or Celiac Disease may be more severe.' (understatement :lol: )

Also says that this means that each of my parents and all of my children will posess at least one copy of a gluten sensitive gene.

Does anyone remember if HLA DQ2 is the one that is associated with the nerological symptoms? I remember reading that somewhere--I think.

Link to comment
Share on other sites
AndreaB Contributor
This is what I eat. Organic grass-fed Beef, organic popcorn kernals, organic ice cream, organic potatoes, organic unsweetened applesauce and organic apples. Thats it. If I give up the ice cream now wont I lose alot of weight??? :unsure:

How did I get brocolli out of popcorn :ph34r::blink::lol:

I would think the weight would start to come off, just don't know how much.

I have one Celiac gene--HLA-DQ2, and one gluten sensitive gene--DQ1

Does anyone remember if HLA DQ2 is the one that is associated with the nerological symptoms? I remember reading that somewhere--I think.

I thought it was dq1 that was associated with neurological symptoms. Maybe dq2 is also, but I don't know.

Link to comment
Share on other sites
dlp252 Apprentice
Does anyone remember if HLA DQ2 is the one that is associated with the nerological symptoms? I remember reading that somewhere--I think.

I can hardly remember what genes I have, lol. Had to put it in my signature so that it would be handy if someone talked about it. :ph34r: So, sorry, I can't answer the question about neurological symptoms...but I bet I HAVE that gene. :P

Link to comment
Share on other sites
Rachel--24 Collaborator
Does anyone remember if HLA DQ2 is the one that is associated with the nerological symptoms? I remember reading that somewhere--I think.

Patti....I dont recall ever reading anything about DQ2 and neurological symptoms but then again I dont have that gene so never looked into it much. I read alot about DQ1 and neurological symptoms though. I remeber reading that having 2 DQ1 genes could cause very severe symptoms....worse than Celiac genes. Dont know if its true though....most of what I'd read was on the BrainTalk board....which I think is still down??

Oh....I think Nancym has a link to The Gluten Files from that board in her signature. Maybe you can find stuff about the genes in there.

Link to comment
Share on other sites
jerseyangel Proficient
I thought it was dq1 that was associated with neurological symptoms. Maybe dq2 is also, but I don't know.

You're probably right, Andrea. I really couldn't remember. I'm going to look it up--for some reason, I'm kind of nervous. It's not like I should be surprised cuz I know I have it but this means there could not have been some mistake or anything. When I'm nervous, I ramble :ph34r:

Patti....I dont recall ever reading anything about DQ2 and neurological symptoms but then again I dont have that gene so never looked into it much. I read alot about DQ1 and neurological symptoms though. I remeber reading that having 2 DQ1 genes could cause very severe symptoms....worse than Celiac genes. Dont know if its true though....most of what I'd read was on the BrainTalk board....which I think is still down??

Oh....I think Nancym has a link to The Gluten Files from that board in her signature. Maybe you can find stuff about the genes in there.

It must have been the DQ1 then. Well, I have that, too :unsure:

Anyway, thanks for reminding me about the gluten file. I'll have a look there. :)

Link to comment
Share on other sites
CarlaB Enthusiast

I know DQ1 is associated with neurological symptoms, but don't know about DQ2. DQ2 is a celiac gene, DQ1 is a gluten sensitivity gene.

Bad news about 2 DQ1's being possibly worse than celiac ... that's what I have.

Patti ... we haven't forgotten that you still need to put up a picture of your new hair!!! I'm getting mine colored again this Friday. This time it should stick a little better than last.

Link to comment
Share on other sites
Rachel--24 Collaborator
Bad news about 2 DQ1's being possibly worse than celiac ... that's what I have.

Sorry Carla,

I'm not sure if this is based on any scientific evidence though....if that makes you feel any better. Alot of what I read on that board was people putting their own experiences together and coming to this type of conclusion. They may have had some studies or some type of research to back it up but I didnt spend alot of time going through all the info. So I dont wanna spread any misinformation. :ph34r:

Link to comment
Share on other sites
CarlaB Enthusiast
Sorry Carla,

I'm not sure if this is based on any scientific evidence though....if that makes you feel any better. Alot of what I read on that board was people putting their own experiences together and coming to this type of conclusion. They may have had some studies or some type of research to back it up but I didnt spend alot of time going through all the info. So I dont wanna spread any misinformation. :ph34r:

I believe I've heard it before. What I heard is that the sensitivity is strong because of the double gene, then there are the neurological symptoms that are worse than with celiac genes. That was the context that I heard it described in.

Link to comment
Share on other sites
jerseyangel Proficient
I know DQ1 is associated with neurological symptoms, but don't know about DQ2. DQ2 is a celiac gene, DQ1 is a gluten sensitivity gene.

Bad news about 2 DQ1's being possibly worse than celiac ... that's what I have.

Patti ... we haven't forgotten that you still need to put up a picture of your new hair!!! I'm getting mine colored again this Friday. This time it should stick a little better than last.

I just had it wrong--it's DQ1 and not 2 :ph34r: The combination that I have is consistant with the Celiac disease and the neuro symptoms that I have (neuropathy and anxiety). At least it makes sense to me.

The picture--yea, I'll get to that. You'll have to put up a new one with your new color! :D

Link to comment
Share on other sites
Rachel--24 Collaborator
It says that 'having two copies means that there is a stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or Celiac Disease may be more severe.'

I never understood this statement. Based on the results I've seen from Enterolab gene testing...*everyone* has 2 genes...either 2 celiac genes, 2 intolerance genes...or one of each. I have NEVER seen anyone come back without one of these combos. :huh:

Does this mean the entire population has either celiac or intolerance genes?? :huh:

I dont get it.....also I have never seen someone just have a single gene. Everyone has TWO genes related to gluten intolerance/celiac.....so everyone gets that same message with their results.....but obviously plenty of the population doesnt need to be here in Rachelville discussing such scientificness cuz they are out and about enjoying their breads and pizzas. :unsure:

Ummm....soory for the rant....I just dont get it. :ph34r:

Interuption of scientificness to share this news...

Britney Spears has filed for Divorce!! :D

Ummm....HELLO....what took so long??? :unsure:

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy

    2. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy

    3. - trents replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy

    4. - shadycharacter replied to Linedancegal's topic in Introduce Yourself / Share Stuff
      5

      25 year biopsy confirmed/ate pizza with no ill effects?

    5. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,467
    • Most Online (within 30 mins)
      7,748

    MorticiaCat
    Newest Member
    MorticiaCat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Tibaked If you are diagnosed with coeliac disease, you may find that all sorts of symptoms will be alleviated by a gluten free diet.  GERD and lactose intolerance can be greatly reduced if not eliminated once the gluten-free diet is adopted.  However, if you want to be tested and officially diagnosed you will need to have been consuming gluten until your blood test/endoscopy.   Although I don't have the same sensations you describe before my diagnosis, I frequently woke up with numb arms and numb fingers.  I could feel pins and needles in my extremities.  Weirdest of all, the sensation that drops of cold water, like rain, were falling on me, even though the sun was shining or I was indoors. It took time but things got much better after after following a gluten free diet for a while. Of course,  some neuropathy is caused by malnutrition, common in coeliacs when first diagnosed,  so make sure the doctor checks your vitamin (particularly B12) and iron levels. Cristiana
    • Tlbaked13
      Not officially diagnosed yet I goto the doctor a week from today but I'm 110% that will be the diagnosis I honestly can't believe my doctors/health care team hasn't put it together before I mean I'm basically the live and walking definition straight from the book haha I don't think I've ever been so sure on anything before I'm just reqly concerned for this diet I will be living on or diets I guess due to type 1 diabetes, gastroparesis, gerd, celiac disease, and lactose intolerance...what is left? A sand salad with a side of rain water?!? I definitely see a tough future
    • trents
      Welcome to the forum, @Tlbaked13! Have you been officially diagnosed with celiac disease? It is well-known that celiac disease can result in peripheral neuropathy but so can diabetes. 
    • shadycharacter
      Lactic acid bacteria start to develop as soon as flour and water are mixed, so I assumed that in a yeast dough with long proofing time there could be some effect of fermentation and gluten break down. 
    • Tlbaked13
      I am COMPLETELY new to this celiac disease however I have had the same feelings and then some with my feet for years now and been diagnosed with peripheral neuropathy myself but they blamed and attempted to treat due from my type 1 diabetes and none of the treatment has helped at all so far so possible from celiac disease? Just sharing MY thoughts on this I've had zero confirmation 
×
×
  • Create New...