Jump to content
  • Welcome to Celiac.com!

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




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

confused Community Regular

I just wanted everyone to know I wont be posting personal information on here anymore. If you want pesonal information to what is going on with my health, send me an pm with your email addy and I send out updates from time to time. Of course I will still respond on here with information, it just wont be personal information.

Christine,

I would not worry about the tsh until you get the t4 or t3 results back.

paula


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
mftnchn Explorer

Christine, if you are supplementing T3, what I understand is that the TSH level goes down very low like that and is no longer valid as a single test (although many docs don't seem to know that which is weird).

Rachel--24 Collaborator
I just wanted everyone to know I wont be posting personal information on here anymore. If you want pesonal information to what is going on with my health, send me an pm with your email addy and I send out updates from time to time. Of course I will still respond on here with information, it just wont be personal information.

Paula,

I dont blame you and to be honest this is exactly what has been on my mind the past couple days.

I too wont be posting anything on this board with regards to my health issues, treatments, doctor appt.'s or anything of that nature. I feel its not in my best interest to do this anymore.

Of course if anyone is interested they can always email me....and I will be happy to share any new developments. :)

No more sharing my personal experiences on the board though. ;)

tabasco32 Apprentice
I just wanted everyone to know I wont be posting personal information on here anymore. If you want pesonal information to what is going on with my health, send me an pm with your email addy and I send out updates from time to time. Of course I will still respond on here with information, it just wont be personal information.

Did I miss something? :huh:

tabasco32 Apprentice
Paula,

I dont blame you and to be honest this is exactly what has been on my mind the past couple days.

I too wont be posting anything on this board with regards to my health issues, treatments, doctor appt.'s or anything of that nature. I feel its not in my best interest to do this anymore.

Of course if anyone is interested they can always email me....and I will be happy to share any new developments. :)

No more sharing my personal experiences on the board though. ;)

Okay, I guess I won't either. :angry::)

confused Community Regular
Paula,

I dont blame you and to be honest this is exactly what has been on my mind the past couple days.

I too wont be posting anything on this board with regards to my health issues, treatments, doctor appt.'s or anything of that nature. I feel its not in my best interest to do this anymore.

Of course if anyone is interested they can always email me....and I will be happy to share any new developments. :)

No more sharing my personal experiences on the board though. ;)

I am glad I am not alone in this thinking.

Okay, I guess I won't either. :angry::)

Lisa,

You can still post if ya want lol.

paula

Rachel--24 Collaborator
Did I miss something? :huh:

Lisa, trust me that you didnt miss anything worth knowing about. ;)

Besides....you have my number.....we can still talk about whatever..... and whenever. :)

When I get a little better I'm still gonna come to Fresno for pizza! :P:D

I'm not leaving....just not posting the health related stuff that is personal.


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



Celiac.com Sponsor (A8-M):



mhaber Newbie

I don't have much time to reply but I am going through the same thing. I was going to my allergist often because I was noticing when I ate foods I had reactions. She made me go on some strict diets and I have problems with wheat/gluten, dairy and corn. It was a long hide time figuring everything out. best of wishes and please let me know what foods you find that can be eaten!

Best wishes and many blessings to you!

Sincerely,

Michelle

Well I've been struggling for quite some time now. It doesnt matter what I eliminate I'm still sick. Its like it HAS to be something that is constantly in my system because I havent had a single symtom-free day for over 3 years now. Even when I limit myself to 2 safe foods I'm still having symptoms so basically nothing has worked. All meds or supplements have worsened my symptoms. All gluten-free packaged foods bother me. I toatlly eliminated casein and still have problems. It was only one supplement I was taking that had milk in it so I stopped taking it...felt better...started eating more foods and totally symptomatic again.

I was eating Enjoy Life chocolate chips with no problems..also did some baking...no problems. I had one cake mix with all safe ingredients and reacted. The mix only had like 4 ingredients and I tolerate all of them...the only questionable ingredient is Xanthan gum. Its also in every gluten-free product I've reacted to and also rice milks and almond milks and a ton of other stuff I cant have. I found out its from CORN. I never thought about corn...but its in everything. Even when I'm only eating meat and veggies (no corn) I'm still having corn everyday in my thyroid meds and any supplements or vitamins I've ever taken most likely have corn.

Pre gluten-free I never ate much candy or sweets....my favorite snacks were popcorn and Tostitos. These were also the first foods I started avoiding long before I ever heard of gluten because the next day I always had a swollen face and a migraine. I had thought it was from the salt or something. I thought everything was thyroid related since I had Graves so I started avoiding all salt.

I did some research on corn and its in pretty much everything...seems more difficult to avoid then both gluten and dairy. Today at work (I work in a grocery store) I started reading all the labels of the foods I used to eat before I got sick. They ALL have corn. Its in bread, soups, microwave dinners, yogurts, cheese (why is corn in cheese?). Anyways, I've never been corn-free because of my thyroid meds and lots of other things I've tried over the last year. I had posted about getting "glutened" by all the gluten-free cereals. Well they are all corn based....DUH. I dont know why I never thought of this since everything I've had problems with have some form of corn in them.

I really need to eliminate the corn to see if I get better but dont know how I can do this when I need to take thyroid pills everyday. What do people do in a situation like this? What if I'm intolerant to corn all this time and its in the medication I need to take?

The other big question is am I really intolerant to gluten and dairy? If I get better off corn I dont know what to think about that. All the foods that have gluten also have corn so I would likely have to stay off gluten anyways....hmmm...does pizza have corn in it? :huh:

Also yogurt and ice cream really mess me up but they also have corn. There ARE some brands and flavors that dont have corn so I would LOVE to not have a problem with dairy!!

I would rather be intolerant to corn and gluten both than have to give up dairy for good.

Does anyone have a corn intolerance? Could I have just developed this out of nowhere and NOT have gluten intolerance...or is it more likely that gluten caused this to happen in the first place? I'm actually hoping I'm corn intolerant cuz as hard as it seems I've been struggling a long time now. The symptoms I've gotten from the stuff I've eaten with xanthan gum are severe....also I had powdered sugar yesterday and had another severe reaction. I have no reaction to cane sugar but when I looked at the ingred. of the powdered stuff its cane suger AND corn starch! Right now I feel exactly like I felt before I ever went gluten-free...everything hurts. :( This would explain why I dont do well with anything processed or with any supplements or vitamins or medications.

I dont see too many people here with corn problems but hopefully someone has some advice about the thyroid meds??

nora-n Rookie

Here is one of the last articles on emofree, link from the newsletter one gets when downloading the free manual: Open Original Shared Link

Open Original Shared Link

here another story:

Open Original Shared Link

dlp252 Apprentice

Yeah, I decided a while ago to not post too many details about what goes on with me. Which is one reason why I haven't posted the name of the procedure they did for fixing the floppy intestines, lol. It's an unusal word and if someone (like me) does a search on it this thread will come up.

On a different note. I was really sick again yesterday. My surgeon is referring me back to my gastroenterologist for more testing and to check the ducts. Not sure what is involved with that, but I'm thinking it's probably an endoscopy. I see him Friday.

byebyegluten Newbie
My daughter is intolerant to corn. I am intolerant to all grains, including corn (you may have the same problem, maybe it's lectins? I react to all of them badly). I would NEVER have thought that xanthan gum is made from corn! But you have gotten excellent advice already, I hope you find a compounding pharmacy to make your thyroid meds without corn. It would be amazing if you would have finally figured it out!

I'll be praying for you!

how did you find out that you were intolerant to grains and corn? just by eliminating them? thanks!

AndreaB Contributor
how did you find out that you were intolerant to grains and corn? just by eliminating them? thanks!

Ursula doesn't post on the thread anymore.

I believe groups of foods were eliminated though once other common foods were found to be problematic.

Philibuster82 Newbie

I really want to do a cleanse (having some issues like constipation, bloating, discomfort, etc.) but I'm a little scared because some people seem to say that colon cleansing is a fad, there's no medical evidence, blah blah...

Is that stuff true?

Has anyone heard of this one: Open Original Shared Link? That's the one I'm thinking of doing. The pictures are SO gross... but I don't want that stuff in me.

Any one have a clue as to whether this is safe or not?

dlp252 Apprentice

Sorry Philibuster, I haven't any experience with that. I think in general a colon cleanse once in a while is probably a good thing, especially for those of us with bowel problems, but I have no data on that.

mftnchn Explorer

Lisa, I agree. I definitely missed something. :huh:

Donna, oh no!!! You've really had a long haul with this.

Colon cleanse: I think this is useful. The only thing is I think one has to really think about their own health and the method they use to make sure you don't overwhelm your system. The other thing is, if you have a lot of parasites, giving thought to what makes you a good host (i.e. what keeps your resistence to them down?)

ShadowSwallow Newbie

Yeah... I'm also missing something. :huh: If someone wouldn't mind PMing me, I'd like to know what went down. :)

(Huh, I suppose I haven't posted in a while. But I'm still here! I always read along. :D)

Sara

mftnchn Explorer

Welcome Michelle, Philibuster and bye bye gluten.

Intolerance to grains and corn can be discovered many ways. There are various ways to test. The best and cheapest is to do an elimination diet where you go off the food totally for a week to 10 days (no tiny amounts should slip in) then challenge it by eating the food. Monitor your symptoms carefully. It is best to check plain organic foods if you can, then if those are okay test the non organic versions, etc.

aprilh Apprentice

Hi all....what's going on with not posting?? I rely on people's experiences and have learned so much from them :)

I am sure there are judgemental people on this forum...I have seen it go on. But who cares about them!!

I know of a good forum that we could all go to :)

christine 25 Newbie
Christine, if you are supplementing T3, what I understand is that the TSH level goes down very low like that and is no longer valid as a single test (although many docs don't seem to know that which is weird).

Im not on thyroid meds. so its just weird to have a TSH go so low for me from 1.2 to 0.4. I think--hope--everything is okay and it will swing back in time.

Im seeing an intergrative MD now, so she is getting some new labs, we shall see. Im still alive! That is good at least!

:P

The other night I knocked over a lamp with a flourecent light blub in it... what an ordeal. I had to clean up all the fragments with sticky tape, and then water with a damp cloth, I guess there is a small amount of mercury in the bulbs. So that was fun at 3am. :lol: I think I survived it tho. I aired out the room for 30 min tho, it was 30" outside, lol.

christine 25 Newbie
Hi all....what's going on with not posting?? I rely on people's experiences and have learned so much from them :)

I am sure there are judgemental people on this forum...I have seen it go on. But who cares about them!!

I know of a good forum that we could all go to :)

I don't think anything went down. Maybe there are just fewer, problems to report that are clinical in nature for now. The thread will bounce back when there is stuff going on and people feel like sharing again.

I think that is what some are saying is that they don't feel comfortable putting out

ambigious personal information on the internet. I'm down with whatever. :D

I also have been reading the thread for so long now, it has to be the guiness world record of threads!

luv you guys~

Rachel--24 Collaborator
Hi all....what's going on with not posting?? I rely on people's experiences and have learned so much from them :)

I am sure there are judgemental people on this forum...I have seen it go on. But who cares about them!!

I know of a good forum that we could all go to :)

April,

I think I probably wont be posting much of my personal info. on any public board.....maybe we can figure out some type of private chatroom or something? I dont know if thats possible but its something to consider.

Occassionally, I have felt like some people just read along waiting (and hoping) to see failures.....and not so much for support. You know...there is no real interest in the subject matter....but there is still a desire to "look". Kind of similar to slowing down to see whats happening on the side of the road.....but with no real desire to stop and offer support.

Thats just a feeling I've had for awhile....and not related to any recent events....and certainly not a feeling I have gotten from any of the people who post here. Sometimes it takes something to really open my eyes and I can see that something isnt right for me anymore. So thats just the way I'm feeling right now....like sometimes all of the sharing is not as much of a positive experience as it once was.

So I recognize that its time to make a change so that it CAN be positive...and also there are no worries about my personal info. being made public to *everyone*....including those who are not exactly cheering me on. ;)

I also rely on the experiences of others and continue to learn (on this board as well as various other boards). I would be willing to continue but only if it were in a more private setting.

I'm definately still adding my thoughts, sharing past experiences and supporting everyone here. I'd just prefer to keep all of the details of the new test results, treatments (or anything that I do from this point on) more private.

Do you have any ideas?

confused Community Regular

Rachel.

I started to work on something more private a couple of days ago. But then i had some other issues in my life that i had to work on, but now im going to go work on that project again lol.

I know for me, if i cant share stuff, i will explode. even yesterday something was going on with my life and i was like ughh what rachel recommend or april or everyone else in this thread. But of course the board was down, so i couldnt even post it if wanted to lol.

paula

AndreaB Contributor

Rachel and others,

I like the idea of email's back and forth. There is a way to reply to everyone....at least I've gotten other emails as replies to someone else's emails. I have a lot of emails from here, but not everyone's.

Paula,

If you do want to talk, you know how to contact me.

confused Community Regular
Paula,

If you do want to talk, you know how to contact me.

Andrea,

First you would have be signed in lol.

AndreaB Contributor
Andrea,

First you would have be signed in lol.

Oops. Must not have signed me in last time I rebooted. Going to sign in now. :)

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • Create New...

Important Information

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