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:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator
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.

Thats right Rinne!!

There is no place for the bugs here...we are one warm and cozy bunch. :wub::D


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast

Nancy, on the main board, look under leaky gut and there you will find us. :)

Can you post what your IGeneX test results were? What positive bands were there?

A Western Blot can be negative overall but show some Lyme specific bands. If you have Lyme specific bands, that would indicate exposure to Lyme.

rinne Apprentice
:lol::lol: Check my previous post..

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:

:P:lol:

Thats right Rinne!!

There is no place for the bugs here...we are one warm and cozy bunch. :wub::D

Yup. :)

Nancy, on the main board, look under leaky gut and there you will find us. :)

Can you post what your IGeneX test results were? What positive bands were there?

A Western Blot can be negative overall but show some Lyme specific bands. If you have Lyme specific bands, that would indicate exposure to Lyme.

That was my story, there was a constellation of indeterminates indicating Lyme, such that Igenex recommended treatment and then retesting to try and get the little &^%&* to come out of hiding. :lol:

Julie, nice to see so much of you too. :wub:

rinne Apprentice

And I eat a lot of beef and green peas too!!!!

Is that all you eat?

Guest LittleMissAllergy
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

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

I eat beef and peas....EVERYDAY.

Told you its been a blast. :lol:

Hehe, I was starting to think we were twins UNTIL...

you mentioned beef and peas.

I DO eat the same exact thing everyday, but for me, that's basically a TON of brown rice, beans, broccoli and sweet potato. Everyday. And that's about it.

I don't eat ANY sugar or processed food, I can't...there's a lot I can't eat....unfortunately, that seems to include animal protein, ESPECIALLY beef and chicken. About a month ago I could tolerate mild white fish, but I don't think that's a good idea because of the metals. Perhaps I should try to re-introduce turkey. I know I need the amino acids. This is probably something I'll talk to my LLMD about Monday when I see him. I'm also getting a detox foot bath apparently, I hear that's quite an experience :)

Yes, the surprises are QUITE interesting...like tonight my spleen decided he wanted to swell up like a baloon, but last night it was my throat deciding it wanted to clench up like a bully's fist. What next?

Well I hope you're feeling well these days!

Green12 Enthusiast

rinne is having a :wub: :wub: :wub: fest tonight

:wub: right back at ya!

Carla, you are up late, are you having touble sleeping?....or did you just get back from date night?!?!

I Perhaps I should try to re-introduce turkey. I know I need the amino acids. This is probably something I'll talk to my LLMD about Monday when I see him.

I'm also getting a detox foot bath apparently, I hear that's quite an experience :)

It would be a good idea to talk to your Dr about this, protein is such a critical component in the healing process.

Is it an ionic foot bath??

Rachel--24 Collaborator
And I eat a lot of beef and green peas too!!!!

Is that all you eat?

Pretty much....it seems like its been beef and peas FOREVER!! :rolleyes: I guess forever would be since I gave up ice cream...and that was a LIFETIME ago! :P

After my first few chelation treatments I was eating all kinds of foods. I had a normal Xmas dinner and all of the leftovers for days after that. :) Heck...I even ate out once!! :blink:

Then something happened. :unsure:

Now I'm back on beef and peas. :(

I *think* what might have happened is that I was toxic from copper....the chelation was bringing it down...I was feeling better. :)

Then I started having lots of minerals (copper and everything else) put back into me via IV mineral treatments. Next thing you know I have more copper than ever and I cant eat anything all over again! :rolleyes:

So now I'm going back and doing it over again...this time noone is putting any copper back into me. ;)


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
I DO eat the same exact thing everyday, but for me, that's basically a TON of brown rice, beans, broccoli and sweet potato. Everyday. And that's about it.

Sweet potato?? :blink:

OK...we are soooo NOT twins. :lol:

Besides sweet potato (which is a heinosity for me) I cant touch brown rice, borrocoli OR beans.

I would totally trade you though. :D

I'm jealous...especially about the sweet potatos. :P

Green12 Enthusiast
Sweet potato?? :blink:

Besides sweet potato (which is a heinosity for me) I cant touch brown rice, borrocoli OR beans.

No, we don't want a repeat of the sweet potato incident :blink:

:lol:

Guest LittleMissAllergy
rinne is having a :wub: :wub: :wub: fest tonight

It would be a good idea to talk to your Dr about this, protein is such a critical component in the healing process.

Is it an ionic foot bath??

It IS an ionic foot bath, and I'm very excited for it :) I'm currently doing biofeedback and accupressure and when I went yesterday (ugh it took SO much just to get there) they found that my toxicity level was the highest possible on the scale (which is pretty bad- I've NEVER been that toxic!) so I'm hoping the foot bath will help with that and the symptoms that come along with it.

Sweet potato?? :blink:

OK...we are soooo NOT twins. :lol:

Besides sweet potato (which is a heinosity for me) I cant touch brown rice, borrocoli OR beans.

I would totally trade you though. :D

I'm jealous...especially about the sweet potatos. :P

The grass is always greener, because I would LOVE some beef and peas :) I LOVE LOVE LOVE peas. When I was tolerating all veggies, I'd eat peas ontop of pureed winter squash. Mmmmm...

But it sounds like I tend to have beef episodes just as you have sweet potato episodes :huh:

AndreaB Contributor
No, we don't want a repeat of the sweet potato incident :blink:

:lol:

Definately not!!!! <_<

:wub::wub::wub:

I'll continue the love fest. :)

miamia Rookie

i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years (Well besides minor glutening episodes all accidental)

More than I had gluten I had dairy for the first time in 4 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

dlp252 Apprentice

Okay, who called the love fest and didn't wake me, lol! Adding mine: :wub: :wub: :wub: :wub:

Little Miss, Well, I can't take credit for the phrase...that's what my doctor called it, lol. We have others here around your age too, so that's going to be nice for all of you, lol. Me, I'm almost old enough to be your grandmother, lol.

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.

Yeah, I tried it for a while. It seemed to help a little, but not enough to deal with some of the things one had to do to stay on it, lol. I'm also pretty restricted in what I can eat, and don't have the time to make a lot of stuff.

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

Someone mentioned we are in the leaky gut section...you can also press "View New Posts" at the top of the screen...we're almost always in that group of new posts...sometimes not on the first page, but somewhere in there, lol.

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 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....

I have had the white spots on my throat and my tongue is coated white all the time. :rolleyes: As far as diet, I do like most and stick to protein and veggies and limit the carbs (unless I get hooked on Dove Extra Dark Chocolate, lol).

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

Yep, yep, yep...I know a little about this lately, lol.

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.

Well said sage Rinne! :P

Sweet potato?? :blink:

No, we don't want a repeat of the sweet potato incident :blink:

OMGOSH!!! NO more sweet potato incidents for Rachel! I'd have to hunt her down, lol.

But it sounds like I tend to have beef episodes just as you have sweet potato episodes :huh:

Okay, yes, no beef episodes for little miss either! :lol: WE can't have two of you roaming around out there in beef and sweet potato stupors! :lol:

i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years (Well besides minor glutening episodes all accidental)

More than I had gluten I had dairy for the first time in 4 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

OMGosh Mia!!!! Sooooooo how did that go, lol. How are you feeling after all that?! :lol:

confused Community Regular

Ok i tried to read all the new post, but i had an mold breakdown yesterday. I did one of the mold plated in the kitchen/boiler area. Well the last time i looked at the plate it didnt show much of anything, so i thought to myself the mold is all in my head lol. Well yesterday i grabbed it and looked at the plate, and it was covered with black, green and yellow mold. I freaked out and had an small breakdown. I hurried and sent the mold plates in to be teseted.

We also tried to call contractors and heating contractors all day and no one would call us back. I have no idea if we will ever get this under control. OUr nieghbors that rent out the houses next to us, said they will try to find someone to help. He is an retired plumber and he said he wish he could help but the rental just flooded and they have a huge mess next door.

I also just took an tea tree oil bath, cause someone rcommended it was good for yeast infections. Well now my stomach area is on fire. Im thinking the oil is pulling out the toxins from my insides were im probably the mose affected by the mold, or am i just off base on my thinking.

Im hoping to read all the post i missed when my brain fog has lifted.

paula

Guest tamedandfoxed

Hair Analysis

You guys have mentioned this before--what is it? Is it for Lyme or Metals or what? Also-- where do you go to have it done?

~Katy

AndreaB Contributor
i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years (Well besides minor glutening episodes all accidental)

More than I had gluten I had dairy for the first time in 4 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

WOOHOO!!!! Yes, as Donna said, how do you feel?

Katy,

My doctor did my hair analysis, he's a holisitic MD. I just got a notice that he's closing his office over on this side of the mountains so if I want to continue seeing him I would have to travel 4-5 hours.....one way. :huh: I haven't decided if I want to do that or ask him if he knows of someone else on this side of the mountains I can take my family to, although I'll probably do that.

Paula,

Sorry about the mold plate. I hope you guys can get this all figured out.

Don't know what to think about the bath and your reaction. :(

CarlaB Enthusiast
Carla, you are up late, are you having touble sleeping?....or did you just get back from date night?!?!
Our girls had a party with their youth group from 7-12, so I was still up. :)

I actually did have trouble sleeping. There are articles all over LN about green tea helping abx work better. They did a study in the Far East somewhere because they were concerned about green tea maybe keeping the abx from working and found they worked much better with green tea.

I love green tea, so I drank about a quart yesterday .... couldn't sleep last night.

I would totally trade you though. :D

I'm jealous...especially about the sweet potatos. :P

:lol:

But it sounds like I tend to have beef episodes just as you have sweet potato episodes :huh:

Yours are only like Rachel's if you would sit down in one sitting and eat a WHOLE COW!! :o:lol:

Around here, when someone grossly overeats, we call it "Racheling."

i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years (Well besides minor glutening episodes all accidental)

More than I had gluten I had dairy for the first time in 4 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

WOOHOO! (how do you feel?)

My doctor did my hair analysis, he's a holisitic MD. I just got a notice that he's closing his office over on this side of the mountains so if I want to continue seeing him I would have to travel 4-5 hours.....one way. :huh: I haven't decided if I want to do that or ask him if he knows of someone else on this side of the mountains I can take my family to, although I'll probably do that.
:angry::(
dlp252 Apprentice
Ok i tried to read all the new post, but i had an mold breakdown yesterday. I did one of the mold plated in the kitchen/boiler area. Well the last time i looked at the plate it didnt show much of anything, so i thought to myself the mold is all in my head lol. Well yesterday i grabbed it and looked at the plate, and it was covered with black, green and yellow mold. I freaked out and had an small breakdown. I hurried and sent the mold plates in to be teseted.

Paula, I never saw anything on the plate...I had to leave it out for only an hour or two, then seal it and send it in.

Hair Analysis

You guys have mentioned this before--what is it? Is it for Lyme or Metals or what? Also-- where do you go to have it done?

Same as Andrea, my doctor ordered it. We knew it wouldn't be that accurate for me as far as metals, but it was a good way to see how my mineral looked. The test I had done showed a range of metals and some minerals. The only metal that came back way elevated was silver. I'll find out more accurately (hopefully) what's going on when I have my provoked challenge next month. My minerals were all out of whack, lol. As Rachel said, that can be an indication of metals issues.

The hair analysis can be accurate, but it will only show metals if your body is able to release them. I also color my hair so that makes the test way less accurate, lol.

confused Community Regular
Paula, I never saw anything on the plate...I had to leave it out for only an hour or two, then seal it and send it in.

The ones I did, you had to put in the area for an hour, then put the lid back on for 48-72 hours. This one we put out on tuesday night. Well i looked on wed and it looked fine. So i looked again yesterday morning and it was a complete sceince project. They say if you dont see anything after the time frame, to just throw it away. If it shows sutff then you know you have mold. But if you want to know what kind of mold then you have to send it off. So off it went lol.

paula

Green12 Enthusiast
i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

:o

OMGosh mia, what a development.....what is the outcome, how do you feel today?!?!

Ok i tried to read all the new post, but i had an mold breakdown yesterday. I did one of the mold plated in the kitchen/boiler area. Well the last time i looked at the plate it didnt show much of anything, so i thought to myself the mold is all in my head lol. Well yesterday i grabbed it and looked at the plate, and it was covered with black, green and yellow mold. I freaked out and had an small breakdown. I hurried and sent the mold plates in to be teseted.

I also just took an tea tree oil bath, cause someone rcommended it was good for yeast infections. Well now my stomach area is on fire. Im thinking the oil is pulling out the toxins from my insides were im probably the mose affected by the mold, or am i just off base on my thinking.

Im hoping to read all the post i missed when my brain fog has lifted.

Sorry Paula about the mold, that is a very stressful situation you have going there. I hope you are able to get a hold of someone who can come out and help.

Not sure about the tea tree bath :huh: , it is a very strong anti-microbial.

Hair Analysis

You guys have mentioned this before--what is it? Is it for Lyme or Metals or what? Also-- where do you go to have it done?

Same with me, my practitioner ordered it for me, cut my hair, and sent it off. The Dr I work with has all his patients do a hair analysis, it proved to be a wealth of info for me.

Our girls had a party with their youth group from 7-12, so I was still up. :)

I actually did have trouble sleeping. There are articles all over LN about green tea helping abx work better. They did a study in the Far East somewhere because they were concerned about green tea maybe keeping the abx from working and found they worked much better with green tea.

I love green tea, so I drank about a quart yesterday .... couldn't sleep last night.

Well it was after 10 pm here, I was thinking you are on est (or are you cst?) so it was after 11 or 12 for you.

That's interesting about the green tea and antibiotic efficiency.

When I drink green tea I have to drink it in the am, if I drink it after 11 am or so it affects my sleep.

Andrea, sorry about the news your ND is closing his office near you :(

Guest LittleMissAllergy
Little Miss, Well, I can't take credit for the phrase...that's what my doctor called it, lol. We have others here around your age too, so that's going to be nice for all of you, lol. Me, I'm almost old enough to be your grandmother, lol.

I have had the white spots on my throat and my tongue is coated white all the time. :rolleyes: As far as diet, I do like most and stick to protein and veggies and limit the carbs (unless I get hooked on Dove Extra Dark Chocolate, lol).

Hehe...well, as for the age thing...I wouldn't care if you were all 110 years old, you're fun ladies, who I can definitely relate too :) It is indeed nice to hear that there are others around here that are kind of my age as well, would love to see some of those show up sometime. I had to drop out of college this quarter (hopefully I'll be back in the fall though!) so at the moment, I'm a little deprived of teen and young adult company.

Ahhh the white spots, you suffered from them too? They are SO obnoxious. It seems that when they show up my throat and ears start to itch and feel a little swollen and icky. Did ya get to experience that as well?

Oh dear. I wonder what the heck my doctor is going to do with me and my diet...I shall see on monday. This will be interesting!

Our girls had a party with their youth group from 7-12, so I was still up. :)

Yours are only like Rachel's if you would sit down in one sitting and eat a WHOLE COW!! :o:lol:

Around here, when someone grossly overeats, we call it "Racheling."

Well, then I tend to practice "Racheling" every morning. Hehe. I can't tolerate rice in it's normal form, but for some reason I can tolerate Bob Redmill's Brown Rice Farina, so every morning I triple the serving size (3/4 cup dry, a little more than 2 cups cooked) and eat it ALL. Hehe. I really took advantage of that this morning because I know that come monday, my doctor might say that I've got to stop "Racheling" the carby cereal like that...unless brown rice is okay for lyme patients....*crosses fingers*

Can't say that I've ever sat down and eaten a whole cow...BUT...I've got a very interesting Buffalo story. Yes, Buffalo. Long story short- doctors thought I could tolerate it, got excited, at a buffalo, and all bad from there....

confusedks Enthusiast
i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years (Well besides minor glutening episodes all accidental)

More than I had gluten I had dairy for the first time in 4 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

OMG!!! How do you feel?? I am SO nervous at the thought of even trying gluten again! If I get CC'd I am nauseous for 2 weeks straight! :huh:

Little Miss,

I'm 17. And, another poster on this thread ShadowSwallow is a teen too. I had to drop out of high school, so I understand. I'm in online school (that's a whole other story, LOL) and it's interesting....not really what I would like to be doing, but oh well!

Carla,

I read that about the green tea thing too. I have been drinking some green tea from Starbucks lately...because I LOVE the ice. LOL! I get a tall iced green tea in a grande cup with extra ice. They look at me like :blink: LOL!!

tabasco32 Apprentice
Yours are only like Rachel's if you would sit down in one sitting and eat a WHOLE COW!!

Speaking of eating a whole calf, how can you digest that fatty grass feed organic hamburger meat Rachel? I tried it and it felt like I had pop rocks in my gut. Isn't it like 10 percent fat?

They said that they could grinned the leaner organic grass fed meats for me during the day but it don't know.

rinne Apprentice
i have an announcement ~~~~~ Brace your selves I ahd gluten for the first time in 3 years (Well besides minor glutening episodes all accidental)

More than I had gluten I had dairy for the first time in 4 years

Ok I had........

PIZZA!!!!!!!!!!! A real new york slice of regular pizza!!!!!!!!!!!!!!!!!!

!!!!

How are you?

I was here earlier and lost a much longer post, it may have even contained profound phrases :P:lol: but it is gone.

Or maybe it was something like I realized that I had lost my fortitude and that it has been replaced with something much softer and that as a result of that it creates a space for people to step into. I was always so strong willed, :ph34r: a little bit I think people stayed out of my way. :o:lol:

Guest LittleMissAllergy
Speaking of eating a whole calf, how can you digest that fatty grass feed organic hamburger meat Rachel? I tried it and it felt like I had pop rocks in my gut. Isn't it like 10 percent fat?

They said that they could grinned the leaner organic grass fed meats for me during the day but it don't know.

Do you have to eat fat free as well? What you're describing sounds like what happens to me...so I've got no fat in my diet at all.

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. - Jacki Espo replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

    2. - Russ H replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

    3. - trents replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

    4. - Itsabit posted a topic in Dermatitis Herpetiformis
      3

      SkinSafe

    5. - trents replied to Cathijean90's topic in Introduce Yourself / Share Stuff
      1

      I’m terrified it’s too late for me😭


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,315
    • Most Online (within 30 mins)
      7,748

    Gramma Dukes
    Newest Member
    Gramma Dukes
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      For me I gave up oat products and it finally cleared. I had a whole body reaction for months. Two additional culprits for me: shared grill at a restaurant or a shared toaster.  Hope you have relief soon. 
    • Russ H
      It can take between 6 months and 2 years for the dermatitis herpetiformis rash to resolve. The symptoms of dermatitis herpetiformis arise from deposits of certain antibodies building up in the skin. These deposits attract immune cells leading to inflammation and blistering. It can take 10 years for the deposits to be reabsorbed although symptoms resolve long before this.
    • trents
      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
×
×
  • Create New...