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

confusedks Enthusiast

Carla,

Would about 3.30 my time work? That's 6.30 your time...right? lol. That is unless we decide to go to the ER tonight. We are going to also call a new hematologist that is on our plan and see if they can get me in because Iron IVs are a series of treatments. So if we went to the ER, they'd only give me one out of 10 treatments.

Kassandra


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator

I'm wearing pink again today...

Things are looking up already...

My boss is making salsa today. :D

Rachel--24 Collaborator
Also, how about ponytail holders or barrettes? I love those flip-clips, and if they have sparkles, even better!

:lol::lol:

I burst out laughing reading that!!

Barrettes and sparkly flip clips?? :huh:

OMG...I am way too tomboyish for anything sparkly in my hair. :lol:

I guess I better be quiet now...as I sit here in my pink shirt. :ph34r:

CarlaB Enthusiast

Rachel, when my son went to homecoming (stag .... so that he could dance with ALL the girls instead of JUST one! LOL), he wore my hubby's black suit (trendy, not a formal suit), and PINK shirt. So, even BOYS wear pink, surely a tomboy can. ;)

Kassandra, I have to have my son at wrestling pictures at 7PM, so 6:30 I'll be getting ready to drive him .... 7:30 or 8 would be better ... or else earlier, like 5:30 (so we have time to talk).

Rachel, BTW, someone started a thread to get a hold of you ....

dlp252 Apprentice
Well, I have a date with an orange jug tomorrow ... testing to be sure we got all the metals. :)

Fortunately, with the kitchen torn out, the refrigerator is in the hallway right next to the bathroom! LOL :lol: :lol!:

:lol: Happy jug day tomorrow! :P

Thank you everyone for the well wishes. I don't know why...but I don't feel like I need to go to the ER. Maybe it's denial...again! :mellow:

...

They only needed 2 vials. Thank goodness!

Yes, me thinks you are in denial. :P Glad they only needed two vials! That's bad enough, especially one with your situation.

Donna...YAY...glad you're back! Could you tell you were missed?? :D

...

About the Snickerdoodles...Donna dont feel bad...be happy you're holding out for the pumpkin pie. :)

Yes, thanks, lol! I'm thinking it'll be worth it to wait for the PP!

Barrettes and sparkly flip clips?? :huh:

OMG...I am way too tomboyish for anything sparkly in my hair. :lol:

I guess I better be quiet now...as I sit here in my pink shirt. :ph34r:

You know...it starts with a pink shirt...next thing you know you'll be having glittery things all over. :lol:

covsooze Enthusiast

Rachel,

I can't believe I typed overactive :o:P:rolleyes: Nope, I'm definitely hypothyroid. Also suffering a lot at the moment with things I'm trying to say coming out all wrong :lol: Seriously, I am, not just on this one occasion. Even DS has noticed it and sometimes despairs of me because I can't get my words out. Don't know what that one's about as I don't feel particularly foggy at the moment. Maybe it's just extreme tiredness (I think my adrenals could use some help).

Glad you didn't Rachel those cookies and hoping you feel better soon.

My neighbour had a sale at the weekend and I bought loads of almost new pink stuff for a very small amount of money :D Hoping it'll work lol

Susie x

CarlaB Enthusiast

Susie, I'm also Hypo and have to keep eating to keep the weight up ... weird.


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Rachel,

Hope the salsa is as good as last time.

Donna,

Can't wait to see the photos. :) I love pumpkin pie too! :D

Carla,

Hope the metals test is clear and that you don't have to worry about more of those treatments.

Kassandra,

You definately need to get the iron done.......today!

Susie,

Hi! I don't have anything to add. I hope your appointments coming up go well and you start getting some answers.

melmak5 Contributor

Rachel - I also react to the snickerdoodles, but I couldn't help myself. Whenever I eat I react, so at this point I am shooting for things I react less to. If I stick to two cookies, my tongue doesn't swell up too much, so I tried to keep it to a minimum.

Kassandra - I agree with the the others that the ER might be the best place for you, not the most fun, but the best for your body.

Diet update

Corn is out

I am trying rice tonight for the first time and we shall see how that goes

Overall I am burping way more than usual. I cannot figure it out.

But my energy is better today than it was Friday. I think the barium really did a number on my insides.

confusedks Enthusiast

Ugh. Well we talked to my Hematologists' office and they also told me to go to the ER. I guess I have no choice. :ph34r: We are going to go when my mom gets home from her deposition (she's a court reporter).

Right now I am enjoying my iPod with no needles in me! LOL! I HATE EMERGENCY ROOMS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Carla, I will call you. Wait, so 7.30 is 4.30 my time? Right...or I will try you at 5ish. Depends on what happens with the ER and when we go.

I want to cry...this is so scary! I don't want to go to the ER. It's the freakin ER!!!! It's for emergencies! :wacko:

Kassandra

AndreaB Contributor

Kassandra,

I know ER's are not fun places. You need to get this taken care of though. Hopefully it won't be very busy there today.

Is the hematologist going to be able to give you the rest of the IV's? or do you have to go to ER each time?

confusedks Enthusiast

I think the hematologist will give them to me after tonite. I am going to demand a PICC line though. I refuse to be poked every day for god only knows how long. I did it last time and it was terrible!

The thing is that we are going to see a new hematologist because the other one that was following me was not on our plan. So, anything he ordered was not covered.

We found a new one who will meet us at the ER tonite. (Poor man, has to give up his night for me...lol) His office can't get me in for another couple weeks, so once we get orders from the ER to have the treatments for 10 consecutive days, the hematologist HAS to see me and they will cancel other peoples appointments to get me in if they have to. Without the orders from the ER, they can't see me until they have an opening.

Kassandra

AndreaB Contributor
We found a new one who will meet us at the ER tonite. (Poor man, has to give up his night for me...lol) His office can't get me in for another couple weeks, so once we get orders from the ER to have the treatments for 10 consecutive days, the hematologist HAS to see me and they will cancel other peoples appointments to get me in if they have to. Without the orders from the ER, they can't see me until they have an opening.

10 days in a row! :o I assume they go in on the weekends for this type of thing then. I hope they'll do a PICC too. I'd hate to get stuck so many times in such a short time.

Green12 Enthusiast

Kassandra,

I'll be thinking of you.

Back to those Enjoy Life cookies, I think they taste good but I can't get away with eating them either. Something is amuck in them I think :lol: , a very suspicious ingredient....I suspect the sorghum flour or maybe the rice dextrin....highly reactive. The granola, omgosh completely tore up the roof of my mouth and I was sick for a couple of days from that venture.

It's odd that these are the products that are suppose to be free of all alergens but I seem to react to them the most compared to other product lines.

confusedks Enthusiast

Carla,

I will call you tomorrow. Sorry, too much going on right now to think about school. :)

Kassandra

AndreaB Contributor
Back to those Enjoy Life cookies, I think they taste good but I can't get away with eating them either. Something is amuck in them I think :lol: , a very suspicious ingredient....I suspect the sorghum flour or maybe the rice dextrin....highly reactive. The granola, omgosh completely tore up the roof of my mouth and I was sick for a couple of days from that venture.

It's odd that these are the products that are suppose to be free of all alergens but I seem to react to them the most compared to other product lines.

Mitch doesn't do well with there product line anymore either. :(

It may be the sorghum for him. He doesn't do well with our homemade bread either. I don't know if it's sorghum or yeast at this point.

Rachel--24 Collaborator
It's odd that these are the products that are suppose to be free of all alergens but I seem to react to them the most compared to other product lines.

Yup...it soooo true!!

I can eat totally regular gluteney food with better results!! :blink:

My thoughts are that the mold toxins are higher in these foods. Most of the ingredients are pretty high in mold content...including the sorghum. They are sweetened with fruit juices rather than sugar (I do better with sugar). Then theres stuff like date paste. <_<

All I could think about when I read the ingredients was MOLD...but then I went ahead and ate them anyway. :rolleyes:

Whenever I've eaten the Enjoy Life stuff, Glutino breakfats bars, Lara Bars, etc...I get an instant tingling on my tongue. The common ingredients are always high in mold.

I'm thinking that the healthier lines actually have higher mold content because they arent using any preservatives and other things which might inhibit growth.

Thats why I think I do worse with these lines.

Rachel--24 Collaborator
Rachel, BTW, someone started a thread to get a hold of you ....

Thanks Carla....I found it. :)

Told you guys....I'm really bad with my pm's. :ph34r:

Ridgewalker Contributor
Kassandra,

I had an idea about your school situation ...

You mentioned that you are on an accelerated program, right? Well, how much of the standard school curriculum have you done?

Here's what I'm thinking, if you set your goals, which seem to be - 1) To get healthy, 2) To get into college - then you can establish a plan of action.

If you want to take a year to put getting healthy first in your life, obviously, as you have discovered, your current program isn't working ... so, how else can you get into college?

You can homeschool following the rules in your state, that's ONE way.

The other way would be to prepare on your own for the SAT and GED. I know at first glance, you think, "Gosh, no, GED?!!" BUT, it would legally get you finished with high school and then you could take some correspondence classes from a Community College to get the classes you were hoping to have in high school. Then, by second semester of next year, you will have been in treatment for a year and can go to the Community College for that semester.

With the high SAT score and the time in Community College, not to mention one heck of an impressive essay about your journey back to health and having to take your education into your own hands, you are sure to get into the college of your choice.

So, why you are primarily focused on getting healthy, you can finish Algebra II if you haven't already, take an SAT prep course online, and a GED prep course. You can fill in other HS requirements like American History, Government, Grammar, Writing, on your own, not as a class.

Just trying to think outside the box ....

This is actually exactly what I did. I was home schooled through high school. I got my GED a year earlier than I would've normally graduated, and my scores were so high they actually earned me an academic scholarship to the local community college. I did that next, and took the SATs at my leisure, since they weren't required for community college anyway.

It worked out great for me.

Rachel--24 Collaborator
You know...it starts with a pink shirt...next thing you know you'll be having glittery things all over. :lol:

:lol::lol:

Its a scary thought.

CarlaB Enthusiast

Kassandra, tomorrow is probably better at this point for me anyway .... I take a Lariam for Babesia every five days, and tonight was the night. It makes me really LOOPY! OMGosh! I feel like I've been doing drugs ... I saw my neighbor at my son's wrestling pictures (I had been sitting out in the hall on the floor for an hour waiting .... it was HOT in the room where everyone else was) and he said "Hi", but I didn't know what to answer ... he asked if I was okay ....

So, a discussion of homeschooling might not go over very well tonight! ;)

I'm glad you're getting in with the Hemotologist tonight! It's a help having that lined up in advance ... at least it seems that it would be a help.

Sarah, I guess my plan works then! :lol::P I homeschooled my oldest straight through until she was a junior in HS .... except for a short time her freshman year ... She adjusted fine to both the rest of high school and college. I wasn't using a program (did for one of her HS years, but went back to doing my own thing). Being in Indiana at the time (a private school state), I wasn't going to have her take the GED .... she just wasn't going to have a diploma at all ... it was enough for me to say she finished school in Indiana.

Rachel, the mold theory sounds right on the money. I've never done well with fruit juice .... I've also limited my dried fruit and nuts/peanuts ... but beyond that, it doesn't seem to cause a problem ... and the other things are only a problem if I eat them more than a couple days in a row ... by the third or fourth day I'm feeling sluggish.

ShadowSwallow Newbie

Hello, everyone. :-)

I've been "eavesdropping" on you for a few weeks now, and have just finally encouraged myself to post!

I've had terrible allergies all of my life (down to 10 foods at 2yrs old), bacterial dysbiosis, candida, metal toxicity (not very much, though), and adrenal fatigue. I've improved a lot after doing a bunch of alternative things (such as footbaths and BioSet), and found out I had celiac and went on the diet in mid-August (and eliminating Soy and other allergens).

After reading over this forum I found the Lyme thread, and discovered that I had 32 of the symptoms. :huh: I have an appointment with an LLMD tomorrow (it was either tomorrow or late January), and am really excited. :D

~ Birdy

CarlaB Enthusiast

Welcome! Birdy, that's GREAT!!! That's exactly why we all continue to talk about this stuff in such a public place, so other people can learn from our journey! Thank you for telling us and for finally joining us. :)

Please keep us posted on how it goes!

AndreaB Contributor
After reading over this forum I found the Lyme thread, and discovered that I had 32 of the symptoms. :huh: I have an appointment with an LLMD tomorrow (it was either tomorrow or late January), and am really excited. :D

Welcome Birdy! :D

I'm glad you posted. I've seen you reading. :)

I'll be one of the many on this thread waiting for news of your appointment tomorrow. I assume your going to have the full blood workup. That's what Carla's LLMD did.

Down to 10 foods at 2! :o My youngest has lots of food intolerances for his age (so I thought) but not nearly that bad!

Donna and Rachel have both done BioSet. Claire (who hasn't posted in a long time) has also done that. Julie has done the precursor to BioSET, BioScan. Some here have also done various forms of muscle testing, I think ART (autonomic response testing) has been the one used most.

I hope you'll join us frequently as we all go down the road to better health. :)

Green12 Enthusiast
My thoughts are that the mold toxins are higher in these foods.

Rachel, the mold theory sounds right on the money.

So it's the mold running amuck in the Enjoy Life products :lol:

Hello, everyone. :-)

I've been "eavesdropping" on you for a few weeks now, and have just finally encouraged myself to post!

I've had terrible allergies all of my life (down to 10 foods at 2yrs old), bacterial dysbiosis, candida, metal toxicity (not very much, though), and adrenal fatigue. I've improved a lot after doing a bunch of alternative things (such as footbaths and BioSet), and found out I had celiac and went on the diet in mid-August (and eliminating Soy and other allergens).

After reading over this forum I found the Lyme thread, and discovered that I had 32 of the symptoms. I have an appointment with an LLMD tomorrow (it was either tomorrow or late January), and am really excited.

~ Birdy

Hi Birdy, glad you decided to jump in!

Welcome to the maladapted milieu bunch :D

Best of luck with your appt.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,842
    • Most Online (within 30 mins)
      7,748

    Karen Faye
    Newest Member
    Karen Faye
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...