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Omg...i Might Be On To Something


Rachel--24

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confusedks Enthusiast

Everyone,

I successfully took a shower without soaking my PICC line. As a matter of fact, I didn't even get it wet! YAY! We had medical tape already, so I just used that. We are going to get thicker tape though because I used almost the whole thing because it was so thin.

Julie,

I don't know about the numbness. I hope someone has ideas.

Kassandra


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AndreaB Contributor
I want to stick with Dr. M. He seems to know what he is doing with this. The trip of 3 hours to and fro are tiresome though.

I feel ill today like the flu or something. I wonder if it's the supplements or cutting down on ice cream.

I know about the tiring drives. We had a 2 1/2 - 3 hour drive up to Bellevue over the summer.....many times. I hope you can stay with Dr. M

I don't know about the ice cream. It could be a withdrawal symptom due to cutting down though.

I did end up waking up at about 10 this morning so I slept a lot which I needed, but my arm is killing me. Also, the way they had my laying down on the operating table really screwed my neck up again...sigh. And, I can't really take an epsom salt bath.

I'm sorry about your neck being worse again. :( Yay on the sleep but boo on the pain. I hope things simmer down for you soon.

Everyone, lately, well really about the last year, I wake up with my hands numb and they've fallen asleep. What could that be from?

I know numbing and tingling in the extremeties can be from lack of b12 (or not absorbing).

Please see if the shots would be good for you. They are the most effective. I was given b12 shots to do at home but never did (aside from the one at the doctors office). Rachel was taking methyl b12 so that might be something for you to look into.

Ridgewalker Contributor

Kassandra, sorry I didn't post in yesterday, but I was thinking of you at 5 o'clock (your 2 o'clock)!!! I'm so glad it's done with! :wub:

Saw Dr Doofus (the ENT) yesterday. He really really really REALLY wants me to get this thing taken out. Like yesterday. No surprise there.

I didn't get as angry as I thought I'd be or was planning to be. I enforced my views about trying to heal Herbie (the pet name for my primary nodule), rather than get him removed. While we were talking, something hit me....

I'm more afraid of the surgery than I am about the possibility of this being cancer!

Don't worry about venting!!! It's necessary. Could you remind me-- are they just wanting to remove "Herbie" or are they wanting to remove more than that? Just as another point of view.... I would not think of Herbie as being a body part. He's not supposed to be there in the first place... an invader, kind of.

Definitely stick to your guns about the treatment you think is best! But... (((hugs!))) Try not to let fear rule your decisions.

PS- I'd love to see a pic of the Goth-mas Tree! My best friend's hubby would looooove to put up a tree with skulls, but my friend won't allow it. :lol: He is tatooed and pierced... she is a southern belle- they make a cute couple! lol

Dear Everyone,

I went to the doctor for my shot yesterday afternoon, and spoke to her about IgeniX. It just so happens, she went to a conference on environmental medicine and met a doctor from Missouri that specializes in Babesia! This was back in November. She could not remember his last name, but said his first name was Charles. He uses the IgeniX lab as well.

My doctor is ordering the test kit. They will call me when it comes in. I will then get it, and take it to the lab to see if they can do everything necessary to collect and handle the blood sample. I am nervous and hopeful all at the same time. For the first time in an eternity, I finally have some hope.

P.S. I showed the nurse what I want to do to my hair, and she thinks it is really cute! My doctor was glad I grew out my hair, because of the toxic effect it has on the liver. So, maybe this new hairdo would be better for me in more ways than one! Highlighting does not require you to touch the scalp like dying it all one color does. What do you think? Would highlighting be less toxic?

WOOHOO!!! I am so excited for you, to finally have things moving! I do think highlights would be less toxic than an all-over dye job. It also might be wise to wear a simple dust mask to help filter the fumes.

Morning, everyone. I have a major, MAJOR announcement.

Attention! Attention, everyone!

Are you ready?

Are you sitting down?

Prepare to be shocked...

I had a normal BM this morning for the second day in a row. :o:o:o:o AND, at the same time as yesterday. Can you believe it? I'm "regular!"

I don't think that's EVER happened in ... well ... as long as I can remember. CELE-BRATE GOOD TIMES, COME ON! :P;):P

:lol: YAY!!! I totally understand!!! I did huge happy dances the first day Ezra pooped and it was an actual... you know... LOG- instead of diarrhea or a pile of mush. He'd NEVER done that in his entire life!

Offthegrid Explorer
Everyone, lately, well really about the last year, I wake up with my hands numb and they've fallen asleep. What could that be from?

This was actually the initial symptom I went to the doctor with. I knew I had digestive problems for a while, but I guess when you have them virtually your whole life you don't see them as abnormal until they get *really* bad.

I had tons of tests. Sleep test, stress test, MRIs of the spine, nothing. Doctors never could explain it. Eventually I switched doctors, mentioned my aunt can't eaten gluten, and got the blood test but no answer on the numbness. Since eliminating gluten and casein, my numbness has completely gone away.

Of course that probably is not your case since you're already off these substances.

It's also a symptom of carpal tunnel -- one of the first symptoms actually, because you curl up your hands and cut off blood circulation. You might want to try a night splint to see if that helps. Also can be symptom of diabetes. Or the B12 like they said.

rinne Apprentice

Congratualtions offthegrid. :)

Andrea, I am glad Mitch made it home safely. :)

Hi everyone again!

.....

Hi Lisa, I haven't been around so much was glad to find your post today, I see that you have found some answers. I am so glad you have found a doctor who is helping you. :)

....

Everyone, lately, well really about the last year, I wake up with my hands numb and they've fallen asleep. What could that be from?

Could you be sleeping on them? Are they both numb at the same time?

Carla, cute picture. :) Are you the one who started the Humaworm trend? I emailed them yesterday and they do ship to Canada so I am considering it but I'm wondering how you decided to start taking it. Did your doctor recommend it?

I did the salt/C for six weeks which Klinghardt starts people out on to cleanse parasites but he recommends three six week cycles and I did just one so I'm thinking I may not have dealt with the problem thoroughly and I'm not sure I want to go back on that much salt.

Kassandra, I'm glad the pic line went in okay, I hope the iron helps. :)

Nyxie, I hope you will continue to trust yourself. Cancer always seems to be the bogeyman they pull out of the closet when it comes to surgery, am I the only one or does it seem to others that they do like to cut us open? I'm not saying there aren't times when it is needed but I know when I had the lump in my breast the first place they went to was cancer and their whole attitude was so foreboding that it was hard not to become fearful. :) And it makes complete sense to me to be more afraid of surgery than cancer especially since you may not have cancer.

I think it is important to be concerned about the state of mind we cultivate when we are ill, I feel strongly we must lean strongly toward optimism. I think we can be very suggestable when we are ill and subsequently vulnerable.

Did anyone watch House last night, it was the plane episode where a number of people got sick because they believed they were exposed to a contagious disease?

Ridgewalker Contributor
Did anyone watch House last night, it was the plane episode where a number of people got sick because they believed they were exposed to a contagious disease?

I saw that, House is one of my favorite shows! That is a really good episode.

Rinne and Nyxie,

I totally agree that no one should jump into surgery without thinking about alternatives. I myself having been fighting my doctor against back surgery for years now. And I agree that there is no reason to have every little lump and bump removed from your body. I think Rinne made some really good points!

On the other hand, I feel that I should point out the other side of the coin...

Cancer is fear-producing for an unfortunately good reason-- It's a terminal disease that can grow and progress without being seen. To me, that warrants at least a look at "better safe than sorry" surgery.

Really, that's all I'm saying- not to cross surgery off the list of possibilities. It's my opinion, and it may not jive with many others' here. And that's ok! But I would not have felt good not saying anything.

Nyxie, sometimes I can't keep track of everyone's threads here... Does Dr. Doofus have any reason to believe the mass is cancerous? I'm sorry if I'm asking you to repeat yourself.

tom Contributor

JIN!!

FINALLY!!

A Lyme test!!

Woohoo! :) :)

Offthegrid - I meant to say by now how much I like the quote in your sig. :)

"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams


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confusedks Enthusiast

Bad news, it's looking like I'm not going to be able to start the IV's until friday. :(

Kassandra

CarlaB Enthusiast
Carla, cute picture. :) Are you the one who started the Humaworm trend? I emailed them yesterday and they do ship to Canada so I am considering it but I'm wondering how you decided to start taking it. Did your doctor recommend it?

I did the salt/C for six weeks which Klinghardt starts people out on to cleanse parasites but he recommends three six week cycles and I did just one so I'm thinking I may not have dealt with the problem thoroughly and I'm not sure I want to go back on that much salt.

Thank you.

I did start the trend, I'm a trendsetter!

I read about Humaworm on Lymenet .... I went to Humaworm's website to read about it and saw that it treats both klebsiella and citrobacter, which I had an overgrowth of. It also treats malaria, so since I have babesia, I thought that was good, too. It was just a bonus that it got rid of a tapeworm, too. :lol:

I didn't tell my doctor yet .... but the PA had me taking some herbs for the bacterial dysbiosis ... I was taking several herbs, this made it simpler.

I did the salt/C protocol for several weeks last year, too ..... I'm sure I had the tapeworm then .... and it didn't help with the bacterial issues.

ShadowSwallow Newbie

Kassandra,

:( At least it's not like they can delay another week or two now you have the PICC line.

Offthegrid,

PARTY!!! :lol: Congratulations!!! :D

Everyone,

I swear, a miracle happened, at this point Mom's listening to me and very seriously considering anibiotics. I suppose my huge explosion (not pretty, and definitely not something I'm proud of :() last night explaining in detail how crummy I felt and how each of my symptoms was related to Lyme, and then revealing the full extent of my fatigue and how far behind I am in my school work because of it, she realised how serious it was.

Jin,

Congratulations on the Lyme test! Can't wait to hear the results!

This morning while we were driving home from the ortho-bionomist she asked me about herxing, and different lyme things. Thankfully brain fog didn't get in the way of my answers. :) We also wrote out a plan together of what we're going to do over the next few weeks before going to the LLMD. Hopefully we'll stick to this. :D I think one of the reasons she's started opening up to the antibiotics was the price of the Cowden. :P Showed Dr B's description of Lyme and treatment to Dad and he gravitated straight towards the symptom list. Said it was just a description of "life" symptoms. :rolleyes: Of course I think he needs to be tested for at least Celiac, and probably Lyme considering he grew up in rural NH and practically lived in the woods. Ah well, it looks like the first half of the battle towards wellness is done, though :)

Rachel--24 Collaborator
Everyone, lately, well really about the last year, I wake up with my hands numb and they've fallen asleep. What could that be from?

Julie,

I've had the numb-hands-in-the-morning thing going on ever since I first got sick after my dental work. I never had it prior to that. Its pretty much under control now....I never get it anymore unless I start eating processed foods or any kinds of treats I shouldnt have. I can totally predict when I'll have numb hands by what I'm eating.

Prior to any type of restricted diet and chemical avoidance...I had numbness everyday...usually in my feet too.

In my case it doesnt seem to matter if the food is free of all allergens or not. Actually, I think if it adds to the toxic burden in *any* way...I will wake up with numb hands. So if its not organic...or if its feeding candida...or if for some other reason my body doesnt like it...my hands are numb in the morning. :rolleyes:

My mom (who appears to be healthy) complains about waking up with numb hands. I dont think its a coincidence that she has this also. I think I got a hefty load of mercury from her and her 11 amalgams. :(

tom Contributor
. . . Showed Dr B's description of Lyme and treatment to Dad and he gravitated straight towards the symptom list. Said it was just a description of "life" symptoms. :rolleyes:

It is kinda sad that it's so easy to think this way. I don't know what symptoms he specifically read, but I must admit I used to gravitate towards that frame of mind.

Then I found the FINAL intolerance in June and I realized how wrong I was.

Turns out it *IS* possible to wake up w/ a smile every day and be naturally happy ALL DAY LONG!!

(Not to mention the myriad of physical symptoms disappearing, both obviously related and the somehow amazingly or apparently related)

Hope he comes around someday on the celiac testing and/or a diet change.

Ah well, it looks like the first half of the battle towards wellness is done, though :)

If that don't deserve a "YIPPEE" I don't know what does!!

And you're right that it is a battle, Birdy.

Best of luck w/ the 2nd half! :)

CarlaB Enthusiast
I think one of the reasons she's started opening up to the antibiotics was the price of the Cowden. :P

I thought that would help. :lol:

The list of symptoms could be just symptoms of life, it's just that they're more intense than the average person feels on a daily basis. I'd bet most people feel them some of the time .... that's why those of us with Lyme end up being labeled as having Somatization Disorder or Hypochondria.

mftnchn Explorer
I'm questioning what's causing all these food intolerances in my case. I initially did come back negative for parasites from a stool sample somewhere around August 2006 months before "gluten intolerant" dx via blood test.

Welcome!

One of the problems with stool testing for parasites (the conventional type) is that it misses a lot. For example, ameoba disintegrates on exposure to oxygen in the air, no traces left. You have to get the sample from mucous, or from an inside swab, and put in a special medium.

Anyway, you might check into the test you had to be sure.

I feel bad for feeling this way about my own son .... I think he and I will get along much better when he's out on his own and has learned how hard it is to make it on your own. Sometimes I think hubby and I make it look too easy or something, LOL. He's a good person, just impossible to live with.

I think you have done a great job with him and have instilled some great characteristics in spite of his contrariness. I hope that in a few years there will be improvement.

Did you ever notice any response when he was on the antibiotics for that period of time?

Andrea, I took homeschooling one year at a time .... that way when I stopped, it was just the decision on what we chose to do that year and in no way was saying the homeschooling was a failure.

I think that is a very wise approach. Ultimately every child and every family is different, and changes over time with development of all family members. Most of us never have the "ideal" for any length of time, so we make the best decisions we can in our circumstances.

The samento could be causing you the dip today.

I agree, I had a HUGE herx from moving up to quickly on samento the first time. <_<

Sorry to be so whiny and self-absorbed. Just got a whole lot of things hit me all at once and I'm trying to deal with them, more or less, on my own. I'm scared, confused, and frustrated.

I'm more afraid of the surgery than I am about the possibility of this being cancer!

The thought of losing a body part scares the crap outta me! I don't know if its my instincts telling me Herbie is benign. Or is it some psychological need to stay intact?

Again, sorry. Just need to vent somewhere and maybe get a little support/advice. I'm so overwhelmed!

I am sorry, this sounds so very hard for you right now. It is so healthy for you to vent, to be aware of your feelings and express this directly. This brings strength to your battle right now.

I totally agree on getting second and third opinions because you can't undo this!

I have a major, MAJOR announcement.

I don't think that's EVER happened in ... well ... as long as I can remember. CELE-BRATE GOOD TIMES, COME ON! :P;):P

Sometimes [my hubby] can be incredibly supportive (he made me homemade spaghetti sauce when I eliminated soy) and other times he just is very ignorant.

Applause, applause!! I have had a similar excitement, unforturnately it hasn't yet been consistent. I think it is just a lot of factors though overall there is improvement.

Everyone,

I swear, a miracle happened, at this point Mom's listening to me and very seriously considering anibiotics.

Jin,

Congratulations on the Lyme test! Can't wait to hear the results!

Birdy, this is wonderful news! I know it is challenge to communicate with her, but you have succeeded! I'll bet there were some elements that were important in your conversation besides that you were so upset. Way to go!

Jin, I agree! This is marvelous news! I can't wait for the news about your Igenex.

Sherry

mftnchn Explorer

I am trying to keep up reading along...just two more days until I head home until after Christmas!

I've started B12 shots, had a pretty easy week with Flagyl this time, just the one day or so with high fatigue, which hit the day after the gua sha. My back looks much better now, other than bruises over the shoulder blade bones. I'll go back tonight for another massage and see when I should do another one of these. :huh:

I've started also two more supplements for gut healing, these are temporary for a month or two.

A comedy of errors with my friend bringing me my stuff: The pharmacy never gave her the Flagyl--so I still only have my Chinese brand to take. Then my insurance had sent a new card to my US address and I didn't know, so the pharmacy said it was an "old" insurance and wouldn't run it through. Then there was a goof when I ordered my supplements from BAC, apparently I hit a wrong button and didn't notice that the wrong thing was ordered. I got vegetable glycerin instead of something I was supposed to get. Then when my doctor's office sent the B12, they didn't tell me it had to be refigerated, so I didn't tell my friend. It came in a foil pack but she didn't open it (protecting my privacy), so didn't realize it was on an ice pack. It sat out of the fridge for more than 2 weeks. So I am taking it, but who knows if it is still actually good????

Oh well!!?!!

CarlaB Enthusiast
I think you have done a great job with him and have instilled some great characteristics in spite of his contrariness. I hope that in a few years there will be improvement.

Did you ever notice any response when he was on the antibiotics for that period of time?

Thank you. He had a talk with his dad yesterday over the phone ... sometimes that, or in the car, is the best way to talk to a teenage boy ... they open up more that way ... anyway, today I got a sincere apology. :) He said he didn't understand before that I disciplined him and got upset with his poor performance because I loved him ... I mean, why would you bother if you didn't? So, for today anyway, things were peaceful ....

I think he herxed on the Augmentin. I talked to my PA back then, she thought he sounded likely to have it, too. He never even finished all the Augmentin ...

I agree, I had a HUGE herx from moving up to quickly on samento the first time. <_<

I remember you saying that. I hadn't herxed and was going up one drop at a time ... so I went up three drops all of a sudden, and it hit me. I was sluggish today, too.

AndreaB Contributor
I swear, a miracle happened, at this point Mom's listening to me and very seriously considering anibiotics.

Great news! Hope she continues on the path of working a treatment plan out.

I'm sorry about your Dad. Maybe he'll come around once he sees how much better you get with treatment.

A comedy of errors with my friend bringing me my stuff:

Oops! :o I hope the b12 is still ok.

He said he didn't understand before that I disciplined him and got upset with his poor performance because I loved him ... I mean, why would you bother if you didn't? So, for today anyway, things were peaceful ....

My daughter feels the same way he does.

Glad you had a peaceful day. :D

Rachel--24 Collaborator

Ok...I just had my appt. with Anna.

For all the new posters...Anna is my BioSET practitioner. :)

I had to update her on everything I'm doing....its been months since my last visit. I brought my Dr.'s Data results to get her input on that and also so she could have her own copy.

She was really amazed by my report...mainly because these results came from only 1cc of DMPS!!

She couldnt believe I had dumped so much (especially mercury) on such a low dose...and on my first challenge test. She said it looks to her like I'm excreting VERY well. :D

She said she has lots of people excreting much less than this...and they are on higher doses of DMPS.

She said it may not be the case that I would have had trouble excreting on a higher dose...but theres no way to know this for sure.

She said that I did so well on the challenge test that if I just continued dumping the metals like I did on that baby dose...I would be doing GREAT. We dont need to push my body and we dont need to see the metals go into the elevated ranges...I just need to keep dumping them.

She was very happy and excited about this. :)

The one problem that she saw in the report was the fact that my minerals arent looking too great...and those are a critical part of the process. Our bodies wont release the metals if there arent enough minerals in the body.

This has been a major stressor for me over the past few days because...

1. I'm not getting IV minerals because of my reaction to the first IV with minerals/VitC/Glutathione.

2. I am not tolerating my only oral mineral supplement (its probably the brand)

3. I cant get tested for a different brand until I see Amy on the 15th...but my next DMPS is on the 14th.

4. I havent taken any mineral replacement and I'm approaching my 4th chelation treatment. :o

I've actually lost sleep worrying about this.

I told Anna about this and that I had planned on requesting an IV of just minerals without the vit. c and glutathione...to see how I do. She said that I need to do this ASAP...and definately before the next DMPS treatment. She said I'm going to start having big problems with the chelation if I dont get those minerals in me..and I'm going to start not feeling well...she said I wont be functioning at all. :(

I'm going to try to get in this week for the IV. I think I will do better without the vitamin C...Anna also agreed that it was most likely the C that caused my reaction with the first IV.

So then she tested all my mineral salts and pathway function...NO PROBLEMS! :D

Next she tested all the metals....NO REACTIONS!! :D

She tested a bunch of stuff on the computer and not a single problem in any of the things she was testing! :D

She said she just couldnt believe how well I'm doing...considering where I was at last year. She said I'm staying under the radar with everything!! I didnt have any reversals with anything and I've held all the treatments. :)

She pulled out a few panels...all environmental allergens. I did not react to a single thing in ANY of the panels! :o

One of the panels had all the perfumes, laundry stuff, etc..

I told her that I still react to some of these things really badly. She asked me what I'm reacting to and I told her some certain perfumes and BOUNCE!! She said she does not have Bounce...so I was never treated for that...but the stuff I've been treated for has held.

She said that there are thousands of things out there which I have not been treated for...and that she does not have every chemical in perfumes, etc.. Once I start getting better alot of stuff will diminish as the yeast starts to clear up.

Some things....like Bounce and other things that I'm reacting really strongly to...may not go away on their own. I will have to be desensitized to those things later on. She said I will definately be able to know which things are affecting me...and I can bring those things to her (like Bounce) and she will treat me. :)

I told her I felt like the yeast flared up after my last DMPS...I just wanted to make sure it didnt mean that there was any redistribution. She said no...its totally normal and its gonna happen while the metals are moving around during chelation.

So she tested my toxicity scores, drainage, etc. This one really surprised her....she said I'm at 0 for everything! She said she couldnt ask for a better report for me....that this is the best shes ever seen me doing. YAY! :D

I didnt need to be treated for *anything*. :)

She said her only concern is with the minerals. Other than that just keep doing what I'm doing and if any problems develop during the chelation....come back to see her and we'll check it all again.

I told her I think the past year with all the BioSET treatments, LED over the summer and everything else I've done prior to starting chelation must have helped quite a bit.

I asked her if everything looks so good tonight because of these few chelation treatments I've had so far.....does she think that its helped already?? She said..."Oh yeah....MAJORLY...its majorly helping you."

WOO-HOO!! :D

I guess I can say that this was my best session EVER! :)

I will never forget my fist appt. with her last Novemeber...when I ended up in tears because I was sooo overwhelmed with how messed up I was. I had so many treatments and we went through so many panels in all those months. I used to react to *everything* I touched in those panels...I used to be the girl who was "one of the worst"....and now this!!!

Its really amazing to me! I hope things continue to improve. :)

AndreaB Contributor
Its really amazing to me! I hope things continue to improve. :)

That is fantastic news!!!! :D

Definately get in for the mineral IV.

You've made so much progress this last year......I'm excited for you. :D

Rachel--24 Collaborator

Oh yeah...she also tested me for DMPS.

She said I can go up to 3 cc's but not any higher than that right now. I told her Dr. S. does not want me going any higher than that anyways.

She said I can do 3 cc's next time and it should not be a problem as long as I take care of the minerals.

I told her I might stay on 2 cc's. She said its fine....theres no rush and I can go up slowly. If it werent for my lack of minerals I would be ready for 3cc's...but I think for this next round I should stay where I'm at.

Sorry I cant respond to all the posts....but I'm all caught up with the reading part of it. :)

Have to shower now and get ready for bed. :)

Rachel--24 Collaborator
You've made so much progress this last year......I'm excited for you. :D

Thanks Andrea! :wub:

I feel so happy that things seem to be moving in the right direction. I even cried some happy tears this time!

I still have a long way to go but thats ok....I think the hardest part is probably behind me. :)

Now I just have to wait and see what Dr. Amy has to say. Only 10 more days! :D

truthsearcher Rookie

Great Job Rachel!

You have worked so hard to get to this point.

I'm overjoyed for you.

AndreaB Contributor
Now I just have to wait and see what Dr. Amy has to say. Only 10 more days! :D

I can't wait for that update either. :D

confusedks Enthusiast

Rachel,

That's great news! I am so happy for you (and slightly jealous...okay REALLY jealous! :P).

Carla,

I'm glad your son kinda came around today. And the car is the best place...lol! My dad used to do that all the time when he lived here, with my brother. It works miracles! :D

Kassandra

Green12 Enthusiast

Excellent news Rachel :D

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      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
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