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

AndreaB Contributor
Be careful with the Tindamax .... it goes after the Lyme. It was the one that really knocked me on my butt.

Uh oh! Donna I hope that works for you and doesn't put you in a tailspin.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
dlp252 Apprentice
Donna, what's the other med you will be taking?

Be careful with the Tindamax .... it goes after the Lyme. It was the one that really knocked me on my butt.

I don't know...they kept the paper with the name on it, lol. I thought it was written down on the sheet I have, but when I got home I noticed it wasn't.

The pharmacist here talked to me a little about the Tindamax...she said to take it with food because it can make me sick, lol, and to take it away from my supplements and stuff. Not really sure how I'm going to work all this out...may be time for another spreadsheet! I only have to take it for 14 days though.

I'm going to call Dr. S as soon as I get the other med to see if this will interefere with the challenge next week. I can probably wait until after the test if he thinks it will, but on the other hand he may not want me to do it at all if he thinks I have a parasite, lol.

I saw your update too! Hope the switch works and hope Chloe doesn't have to go back on meds.

confusedks Enthusiast

Donna,

About the B12, mine was the highest it could be according to my lab work. I freaked out and called my LLMD's office...he said unless I felt "zippy" that I should continue the shots. It's up to you...but I just thought I'd let you know what he said.

Good luck with the Tindamax. I have been on flagyl for over a week now, and it's not as bad as I thought it would be. I might regret those words soon, lol, but for now it's not that bad.

Babs herxes were WAY worse!

Carla,

Good luck back on mepron!

CarlaB Enthusiast

Thanks, Kassandra. Since I've been on Malarone and Lariam for so long, I'm not thinking it will be that bad. I'll be on the same dosage as last time though so that a significant amount more than the Malarone.

Sadie liked seeing you say hi the other night in chat. :)

Donna, the Tindamax goes after the cystic form of the Lyme. I was taking it for 7 days per month for 4 months. It wasn't that it upset my stomach, it was that it activated the Lyme. I didn't want to be the bearer of bad news .... I just wanted you to be aware that it can definitely cause a herx.

mftnchn Explorer
Hi Sherry, this seems so off topic, earthquake and everything, but they recently changed how they posted DQ genes. You are DQ2,5 , DQ2,5 now. (your siggie)

Open Original Shared Link

We have seen it changed now in the answers from enterolab that are posted nowadays too.

nora

Thanks, I need to understand what that means now!

Sherry

Guest LittleMissAllergy

Ugh. Has anyone ever gotten this horrible burning sensation in their chest, that travels up to their throat? Maybe it's acid...maybe the doxycycline caused it. Whatever it is, it's not very fun.

Anyone know if warm lemon water helps or hurts the situation? I know it's supposed to help detox the liver. I'm just wondering if it'd overtax my liver right now or help it...and if it would help this terrible sensation in my chest or if it'd make it worse.

Ugh.

CarlaB Enthusiast

It sounds like acid reflux. Doxy can be very hard on the stomach. I take something like Prilosec or Prevacid with some antibiotics to help with that.

Also, don't lie down within an hour after taking the doxy.

If it continues to cause problems after a couple weeks, then maybe you should ask for Dorxy, it's the same med but easier on the stomach.

I think it would be fine to try the lemon water.


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



Celiac.com Sponsor (A8-M):



ShadowSwallow Newbie

Candice,

My LLMD prescribed Dorxy for me just because of that. (I have a history of GERD and EE... and even with Prolosec and Reglan I'm experiencing it. Hopefully the Carafate in addition to all that will help me heal.) Definitely something to look into. :)

Donna,

I hope that all works out, and that you don't herx too badly from the tindamax.

Carla,

Glad things are going well for you meds-wise.

Birdy

Guest LittleMissAllergy

Ohhhh okay, thanks you two...

So this isn't something I should be super concerned about? It's a side effect of Doxy? I've just never felt acid reflux before so burning and pain in my chest felt kind of scary.

Thanks for the dorxy advice, I'll look into that :)

CarlaB Enthusiast

Yep, normal side effect. Still undesirable.

Thanks Birdy ..... we'll see if the new meds go well. :P I'm kind of disappointed that it's the Lyme getting worse again, but I knew it was there still because I reacted so much to the Tindamax even when I was symptom-free otherwise. The tini stirs up the dormant stuff.

Rpm999 Contributor

thanks for that help rachel...i had a question for you but your box is full, tell me if that changes...sorry if i'm being annoying or anything, you don't have to :lol:

confusedks Enthusiast

Candice,

I live in Southern CA... in LA to be exact. :)

I have a Lyme friend who is 18 who lives in Northern CA. She's really sweet. You guys might live close to each other.

Carla,

I liked saying HI to Sadie! :P She's so cute! I didn't get her text until way after she sent it. I was in bed, my phone was downstairs.

Everyone,

Is it possible to snap a tendon in your pelvic area? I went to the gym for about 20 minutes yesterday, and I was on the treadmill and heard a pop. Ever since I can barely walk because my silly leg connector joint thing is KILLING me. Is that even possible?

ShadowSwallow Newbie

You could've subluxated it and it didn't go go back in quite right. That's more likely than snapping the tendon (and more easily fixable)... hope you find out what it is soon. :)

Rachel--24 Collaborator
thanks for that help rachel...i had a question for you but your box is full, tell me if that changes...sorry if i'm being annoying or anything, you don't have to :lol:

I cleared out my inbox.

Dont worry...nobody here is annoying. Questions are always welcome. :)

dlp252 Apprentice
Is it possible to snap a tendon in your pelvic area? I went to the gym for about 20 minutes yesterday, and I was on the treadmill and heard a pop. Ever since I can barely walk because my silly leg connector joint thing is KILLING me. Is that even possible?

Is it in the front of the leg/thigh...could also be a hip flexor...mine was out for a LONGGGG time.

CarlaB Enthusiast
Carla,

I liked saying HI to Sadie! :P She's so cute! I didn't get her text until way after she sent it. I was in bed, my phone was downstairs.

I figured you were in bed when you didn't answer. I told her if she wanted to text she had to ask you if it was a good time. :)

You haven't mentioned schooling at your uncle's, are you still doing that?

Sorry about the hip. Don't stress it .... take it easy. One time I pulled some mystery thing in my tricep ... I couldn't do tricep exercises for three weeks, but it was okay otherwise and healed up fine.

nora-n Rookie

Sherry

About which kind of DQ2, the 2,2 or 2,5, the labs have started to report them and to list upp the cchances of getting celiac on a list.

read this thread here:

Open Original Shared Link

so to make clear that you do not have double 2,2 it might be more clear to post that you have two copies of 0201 just like you did, or to write 2,5 and 2,5, or whatever what the labs and researchers will end up with. This is all new now and see how this list confuses people when they do not write 2,2 for the low risk DQ2 and 2,5 for the high risk 2,5.

nora

confused Community Regular

Hello everyone,

Im slowly coming out of my weird place lol. I found more mold in my house the other day, thanks to my kids. They threw water in the bag of dog food and I had no idea. I picked up the bag and it ripped open and all the moldy dog food went all over my kitchen. I was so mad.

I hope to have my hair test back on saturday, monday at the latest. So be prepared for lots of questions, unless it all comes back normal lol.

paula

AndreaB Contributor
I picked up the bag and it ripped open and all the moldy dog food went all over my kitchen. I was so mad.

I'd be a tad bit mad too. :angry:

I'll be waiting for your results.....not that I necessarily know any answers but I like to know test results. :)

confusedks Enthusiast
Is it in the front of the leg/thigh...could also be a hip flexor...mine was out for a LONGGGG time.

It actually is fine now! :P I don't know what it was, but it sure was painful.

You haven't mentioned schooling at your uncle's, are you still doing that?

I haven't been going for the past week or two. Last week I couldn't get out of bed, and earlier this week my tutor canceled. I still can't really get out of bed, but I have to go today. I'm a month behind the date I scheduled. :ph34r::(

It's really hard to force myself to get through the work, when I don't have the energy to care about it, let alone the energy to *do* it.

mftnchn Explorer

Kassandra, I have had that leg pain thing, for awhile then it is totally gone. I think it is a lyme symptom because it seldom happens anymore.

I am sorry about the school struggles. As I look back on many many years of chronic illness, I think one positive thing that I have learned is persistence. Not that I mean you have to do everything when you are not up to it. I just mean that I have learned more to do what I can when I can and then keep at it.

I think the quality of patience and perseverance is learned under circumstances such as what we are all facing. Seeing the "treasure" in the trial is one way to make meaning out of all of this.

Not that I wouldn't love to not have to deal with it at all! ;)

mftnchn Explorer

Nora I really appreciate that you pointed that out about the DQ2. It took me awhile but I figured it out, of course I already knew I was in the highest risk group possible!

Sherry

NoGluGirl Contributor

Dear Everyone,

I decided to just jump on in here, since I have not had the opportunity to catch up with everyone lately. :) What a relief to see Sherry is alright! When I heard of the earthquake in China, I immediately worried about her. :unsure: Thank goodness she is posting! We had numerous earthquakes following the April 18th seismic episode. They say we could have had over 30 different ones! :o

You all are probably wondering what I have been up to. Cleaning and organizing the house is finally happening. The medicine cabinet, kitchen table, dining room table, and countertops are finally looking better. Mom and Dad have been warned that fingers are going to be cut off if they mess up anything! :angry::lol: How could I get anything new done if I have to spend what little energy I have redoing everything I just cleaned? :blink:

Another endeavor is spiritual growth and understanding. Reading books about angels and communicating with God by Dr. Doreen Virtue are due back at the library next Monday. I have to hurry up and read them all by then! Since I am taking notes, it takes a little bit longer. So far, I read the first book in two days, and I am on page 45 of the next one already.

Nothing new is in the health department at the moment. This is due to lack of money and Mom and Dad having to borrow my money to float us. You all know what that is like. I feel like I will never get my Lyme testing done! Dad ran into someone that went to a doctor here in town that helped her with digestive issues. He was telling her about my having Celiac and being on PPIs and not being able to go off of them.

The woman told Dad there is a chiropractor who gave her some supplements and enzymes that got her off of those terrible pills. I have been on Prilosec or some other PPI for nearly nine years now. Since these medications can cause alkalosis, difficulty absorbing nutrients, and increase the risk of stomach cancer, staying on them is more detrimental than helpful. Dad thinks it may be causing my GI symptoms.

Considering you need stomach acid to absorb nutrients and digest food, that would explain why nothing sets well most of the time.

I know Lyme could be causing it, too. However, vitamin deficiencies can cause terrible GI symptoms as well. Feeling like passing out all of the time is also an issue for me. Blood sugar lows are part of that, but research revealed that nutritional deficiencies caused by alkalosis can cause low glucose levels. Everything is connected. It is all about balance.

I was excited to see how many new members we have! :D Welcome everyone! Rachelville is the best place to be! All are true friends, and are here to share information. This is an awesome location to figure out your body! So many good suggestions come from the members here. If one does not think of something, someone else will.

Sincerely,

Jin

AndreaB Contributor

Good to see you Jin. :D

I've been wondering where you were.

Rachel--24 Collaborator
Everything is connected. It is all about balance.

I think you're right about this Jin. ;)

Thanks for the update...I hope the house stays clean after all your efforts. :)

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.