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

ShadowSwallow Newbie

Thanks, everyone! :D

Kassandra, I hope things continue going well and that you're ferritin is in normal range.

Carla, I'm having some D too, probably from the supplement I was having problems with.

Sherry, I'd normally agree with you about the supplement being a problem itself, but I was tested for it with BioSet. So I'm fairly certain that's not it.

Birdy


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor

Kassandra,

Sounds good overall. Can imagine the pain and hope that you get relief from that soon. Also hope, hope, hope you don't need more iron IV's. The last time was scary enough.

Carla and Paula,

Sorry your both having bad days today.

Sherry,

I think Julie's been posting on other threads (like the Tickle thread), but the EM thread has been quiet lately. Glad your symptoms aren't bad enough to keep you from things you need to do.

dlp252 Apprentice
A Donna siting, LOL! Wish we'd hear from Julie. Its been quite a while, and I wonder if she is doing ok.

LOL! I've mostly been just reading along. I'm not posting a lot these days...everything is kind of on hold right now...just doing lots of research on the upcoming surgery. Worrying about my CT scan on Wednesday is keeping me busy right now, lol. I have to drink the barium stuff tomorrow night, then more on Wednesday PLUS get an IV of dye. I can't imagine my body will like any of that. :rolleyes:

Hope they don't put my newly pinned foot in the scanner, lol. :lol:

Hoping those of you in pain and/or feeling bad will feel better soon!

mftnchn Explorer
I'm glad you are functional through the symptoms, Sherry.

I was really in bad shape today. I never even got dressed. I'm going to shower now and go back to bed.

I put some trace minerals in my water. Also sea salt (Real Salt). Part of the problem is that whenever I eat .... well, you know. This is a previous symptom. I am wondering if this is a healing reaction??? Sometimes when you're getting better your body revisits old issues that weren't fixed the first time around. Let's hope it's that. :)

Maybe it is getting back on your meds too soon?

mftnchn Explorer

Open Original Shared Link

You all might like this link about the contents of a book on the Gut and Psychology. It discusses the importance of the flora of the gut with immune system, etc. Some of what we have talked about here already.

AndreaB Contributor
Open Original Shared Link

You all might like this link about the contents of a book on the Gut and Psychology. It discusses the importance of the flora of the gut with immune system, etc. Some of what we have talked about here already.

Some good info in there. I don't know how much of a problem this is for us anymore....hoping we've improved a little. Have been eating dairy though so maybe we caused more problems again.

CarlaB Enthusiast
Maybe it is getting back on your meds too soon?

I don't know. I'm not taking any today .... I haven't eaten any solid food yet today to be able to.

This morning I was very dehydrated .... I was freezing. Adam has been giving me chicken broth and Gatorade.

I got an email from Kassandra. She went to the ER last night with her stomach pain. Today she was looked at by a GI doctor and has gallstones and elevated liver enzymes. Poor thing, she's been through it all.


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
I don't know. I'm not taking any today .... I haven't eaten any solid food yet today to be able to.

This morning I was very dehydrated .... I was freezing. Adam has been giving me chicken broth and Gatorade.

I got an email from Kassandra. She went to the ER last night with her stomach pain. Today she was looked at by a GI doctor and has gallstones and elevated liver enzymes. Poor thing, she's been through it all.

Hope you are able to get a handle on the dehydration. :(

Poor Kassandra indeed! Is she going to undergo proceedure to remove gallstones?

nora-n Rookie

Poor girl. I heard of another young woman once with gallstones who had had low-grade hypothyroidism, which had been the probable cause of the gallstones (it is hard to get a diagnosis, or help, with hypothyroidism if the numbers are still within range. The lab rages are way too wide)

I was gonna post to her that I just recently read an article in the doctor's megazine here about mystery low ferritin and they could not figure out why, and they sometimes found some blood in the feces. Several cases were discussed. The situation did not get better, and they had to give transfusions etc. embolized some suspect spots in the stomach.

Turned out they had a low-grade ulcer hardly visible in endoscopy.

Patients were put on ulcer med, and ferritin rose and stayed high.

Open Original Shared Link

Open Original Shared Link and you can find similar articles by following the all related articles link to the right

nora

CarlaB Enthusiast

Last time Kassandra emailed she did not know whether she would be having surgery or not. I hope she can get to the computer to see those articles, Nora.

I seem to be getting a handle on the dehydration. I'm still really weak though. I had just chicken broth earlier in the day, but a little while ago I was able to eat a can of organic chicken with rice.

I don't think the Gatorade helps any with the hypoglycemia, but it was better than a trip to the ER. Water, even water with salt, wasn't helping. Right now I'm craving chicken broth ... must be something in it I need.

ShadowSwallow Newbie

Poor Kassandra. :( Ugh, yet another thing to deal with.

I'm glad you've found a way to get the fluid you need, Carla. I hope the D lets up soon.

Birdy

CarlaB Enthusiast

Thanks, Birdy. It seems to have let up now. :)

tabasco32 Apprentice
I'm kind of at the point that I dont really think there's any ONE factor for me. Even if mercury tipped the scales for me....I'm not really focused on it as a MAIN issue anymore.

The more I'm learning the more it just makes sense that alot of it comes down to genetics. Half of it is probably having to do with the genetic weaknesses and the other half is the toxic exposures.

I dont really care now which toxin put me over the edge because I think at this point the only way that I can recover is to support (or bypass) whatever weaknesses took me down this path to begin with.

I totally agree with this. I believe though that when you are already ill, there can be one thing that can make you sicker, like mold in my case.

I also believe in the genetic weaknesses. I was always getting these strange illnesses as a child. I have always had a weak immune system. My greatgrandma Ruth was the same way. She was always sick and ended up passing away at a early age from kidney disease. I think I have her genes.

It is hard to avoid toxic exposure. Silent Killers. :angry:

confused Community Regular

It is officiacl, my kids are trying to kill me. For the last couple of days i have been really sick while im at hte computer, i get really dizzy and lightheaded and what not. I was thinking it must be the emf's. Well I deicded to clean off the entertainment center and all the litle thingsand compartments. Well i went to stick my hand in the little vase type thing i have and i started to feel faint. Well i found an very molded peach in there. My eyes are burning now and i feel like i could go to sleep.

No wonder i cant detox mold for long.

Would coffee enemas help me at all. Im really to the point of trying them.

Btw did anyone watch rachel ray today. The dr was on talking about colon cleanses just being all hype and they are not good for us.

paula

CarlaB Enthusiast

You could always try a coffee enema to see if it would help. They make the liver produce glutathione and dump toxins (bile) so it could help.

confusedks Enthusiast

Hi everyone!

So I couldn't get in to see the GI Dr until tomorrow afternoon. I'll bring my CT results with me. I'm praying and hoping and wishing I don't have another attack because even the strongest dose of IV fentanyl (wayyyy stronger than morphine) barely took the edge off. And, they sent me home with just vicodin which isn't very strong.

The GI Dr will want to have me have an ultrasound and probably a HIDA scan. Dr H's PA called me and told me to up my dose of Actigall (prescription med for gall stones that they give when you're on Rocephin to protect the GB) and see if maybe that helps.

My liver enzymes are also elevated, so they will possibly have to pull me off the Rocephin...but we'll decide that more based on the GI Dr's opinion with the gall stones.

Also, I have to cut all fat out of my diet which is not a good thing...I was struggling to maintain/gain weight, now there is almost no way I will be able to maintain. I just hope I don't have to stay on low fat/protein for long because I will quickly lose weight with no almonds, etc.

I was also severely dehydrated and my glucose levels were high. I'm hoping that my blood sugar isn't a problem, but it's strange because I don't eat any sugar and I only eat low glycemic index carbs/starches.

Finally, I have a pericardial effusion...which I don't have any idea about. I googled it and it freaked me out, so I stopped, LOL! :)

I'm exhausted today, needless to say. I was in the ER until 2.30am today. I also feel crappy when I have to eat lots of carbs which is what I'm having to do in order to keep my cals up. I can only have 6oz of protein a day!!! :o I usually eat that at lunch and dinner, plus protein bars and smoothies!!!

Nora, thanks for the articles! I will talk to the GI dr tomorrow about the low ferritin. They'll probably want to run more tests (endoscopy, etc.) to see if there is an internal bleed or not...also to get to the root of my nausea, possibly. We'll see.

mftnchn Explorer

Kassandra, again so sorry for all of this!!! Sure hope it is resolved readily without more invasive procedures.

Blood sugar goes up when there is infection and I think with stress. Hopefully that won't be a big issue.

Carla, so glad the D has stopped, and you are tolerating more food. This has been a rough period for you, and a wake up call to all of us about the impact of mold on us.

Sherry

CarlaB Enthusiast

Kassandra :( You are tough. :)

Yes, Sherry, I keep thinking, how can this all be from mold? Then again, I was very sick, so I don't know what I was thinking in considering there would be no detox.

There's a post on the Lyme thread. Just a head's up for everyone.

aprilh Apprentice
Hi everyone!

So I couldn't get in to see the GI Dr until tomorrow afternoon. I'll bring my CT results with me. I'm praying and hoping and wishing I don't have another attack because even the strongest dose of IV fentanyl (wayyyy stronger than morphine) barely took the edge off. And, they sent me home with just vicodin which isn't very strong.

The GI Dr will want to have me have an ultrasound and probably a HIDA scan. Dr H's PA called me and told me to up my dose of Actigall (prescription med for gall stones that they give when you're on Rocephin to protect the GB) and see if maybe that helps.

My liver enzymes are also elevated, so they will possibly have to pull me off the Rocephin...but we'll decide that more based on the GI Dr's opinion with the gall stones.

Also, I have to cut all fat out of my diet which is not a good thing...I was struggling to maintain/gain weight, now there is almost no way I will be able to maintain. I just hope I don't have to stay on low fat/protein for long because I will quickly lose weight with no almonds, etc.

I was also severely dehydrated and my glucose levels were high. I'm hoping that my blood sugar isn't a problem, but it's strange because I don't eat any sugar and I only eat low glycemic index carbs/starches.

Finally, I have a pericardial effusion...which I don't have any idea about. I googled it and it freaked me out, so I stopped, LOL! :)

I'm exhausted today, needless to say. I was in the ER until 2.30am today. I also feel crappy when I have to eat lots of carbs which is what I'm having to do in order to keep my cals up. I can only have 6oz of protein a day!!! :o I usually eat that at lunch and dinner, plus protein bars and smoothies!!!

Nora, thanks for the articles! I will talk to the GI dr tomorrow about the low ferritin. They'll probably want to run more tests (endoscopy, etc.) to see if there is an internal bleed or not...also to get to the root of my nausea, possibly. We'll see.

Kassandra,

I don't know if it might be too late to try it, considering you are in so much pain, but Gold Coin Grass (herbal) dissolves gallstones and takes the pain away within a week for most people. The problem is I think you have to order it. I couldn't find it locally. It worked very well for me. It's a decoction so the herb is in alcohol.

I ordered it from Julia Chang's website.

I hope you don't have to have anymore invasive procedures! You have been through so much!

aprilh Apprentice

there is a convention here this weekend called "raising healthy kids in a toxic world" and they are talking about Autism, Add, nutritional and natural approaches, toxins in vaccines, mercury,ect. I think they said Holly Robinson Pete was going to be there too.

They had some info on NPR - National Public Radio if anyone is interested. I am going to try and go.

And my hubby actually listened to the radio broadcast and has shown a little more openess. ;)

Rachel--24 Collaborator
there is a convention here this weekend called "raising healthy kids in a toxic world" and they are talking about Autism, Add, nutritional and natural approaches, toxins in vaccines, mercury,ect. I think they said Holly Robinson Pete was going to be there too.

They had some info on NPR - National Public Radio if anyone is interested. I am going to try and go.

April, I would love to go to this! I think you're on the other side of the country though. :(

Yeah...otherwise I would be there for sure. ;)

I'm hoping to go to one of the big conventions one of these days. I'd still love to see Dr. K., Dr. Amy and all of the other speakers. Maybe next year. :)

Dr. P. (my new Dr.) talked about all of these same issues several months back at one of the Whole Foods in my area. I saw the info. on a flyer (obviously this was before I was seeing him) and I was planning on going......but then I missed it. I'm still pretty bummed that I didnt get to go. :(

I guess I wont see Dr. Amy anymore.....unless I go up to Washington. Thats a huge bummer because I totally enjoyed my visits with her! Right now I'm gonna focus on what I'm doing with Dr. P. though.

April, if you go make sure you tell us all about it! :)

And my hubby actually listened to the radio broadcast and has shown a little more openess. ;)

Wow...thats great! Its baby steps.....this is definately a good sign. :D

Rachel--24 Collaborator

Kassandra, good luck with the GI tomorrow! I'll be thinking about you and hoping that this gets resolved quickly.

Dang.....its just one thing after the next....but yeah....you are definately one strong girl! You'll get through this. ;)

Pericardial effusion?? :huh: That one is totally new to me.....will have to read up on that one later.

Rachel--24 Collaborator

Happy Belated Birthday to Birdy!!!! :)

Sorry I missed it!!

Rachel--24 Collaborator
Well i found an very molded peach in there. My eyes are burning now and i feel like i could go to sleep.

:blink:

Paula......its neverending!! :rolleyes:

confusedks Enthusiast

Another update... My hematologist called and my ferritin is at 5. It drops about 2 points a week at this point. Especially because I'm supposed to get my period soon. So my hema wants to premedicate me and give me a different Iron IV.

I told Dr H and he was like "noooo, not this again!" He is going to talk to the hematologist tomorrow so hopefully they will come up with a game plan.

Dr H said it sounds like my GB needs to come out...I've been having wrong looking urgent D. Dr H said that I'm ruining his football season! :lol: LOL!

He wants me to keep him updated so he can give his input every step of the way. Thank God he's so dedicated! :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,181
    • Most Online (within 30 mins)
      7,748

    Martin Higgins
    Newest Member
    Martin Higgins
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...