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

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.

  • 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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

    3. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.