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 Celiac.com!
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

NoGluGirl Contributor

Dear Everyone,

I am reading along and have been all week! I just wanted to do a drive-by to check in until I get my column posted. :) Cleaning up the house has been the main activity for several days now. We cannot get our Christmas decorations up without doing so. Dad and my brother began putting this entertainment unit for the den together last week, and it is still there in the middle of the living room floor! :rolleyes:

Dad was wanting my mother and I to clean up the area, but it is impossible to do with that cabinet there!

I can clean up some of that area, but it is not going to do much good. The tree has to go where that big cabinet is currently laying! At least this year, we found the key to the other side of the garage so we do not have to buy another one this year because we could not get to the usual tree like last year! :lol: Yes, my father has loaded the garage up with that much stuff! :o

As far as my health goes, I made some interesting observations. When first beginning the antibiotic, I noticed the neck pain slightly increased along with the stiffness. That lasted for a few days. Stomach symptoms were a bit better in the upper tract, but the lower tract became very irritated after the first few days. Interestingly, the neck stiffness and TMJ improved and was not near as bad while on the antibiotic after Day 3.

I finished my antibiotics before the weekend. My last dose was Friday morning. Dad picked me up some Florastor that my doctor recommended. It is actually a type of SBO that is a yeast. As surprising as this may be, it can actually help crowd Candida out. I believe bacterial dysbiosis in my bowels was caused by the Amoxy, because it gave me terrible gas and the stools also were foul smelling.

The new probiotic is helping already! Unfortunately, I do have the TMJ and stiffness back in my neck. Also, I am aching and very tired due to the rain. We are going to have rain for the next five days! :( I still have not tested the casein, although it has been more than two weeks. I am afraid to try any chocolate containing milk after the pumpkin pie pukies.

In other news, my grandmother with Alzheimer's called the other night. She was having a good day. :) We got to talk for over half an hour! I have missed that so much. Before she became so ill, we used to talk on the phone daily.

I could not believe some of the things she remembered! I wish she had more days like that. She wants me to come visit. Due to my health, it is difficult for me to do much, but I am going to try! My cousin and aunt are coming the week before Christmas, so I am hoping to go see them as well.

Of course, I felt so good after I got off the phone. I did feel sad at the same time, though. This is because I know the next day, she probably would not remember anything. Then I told myself to stop and be grateful God gave us this conversation and to stop focusing on the bad part. While we were talking, she asked if I would like her cedar chest that is so beautiful to put clothing in, and said she had some wonderful silver jewelry she knew I would like.

That is my Grandmom! She would give you the shirt off of her back! :) As bad as her condition is, she worries about Grandad. His heart is strained, and only functions between 15 and 19 percent. Grandmom said he spends a lot of time in bed from his arthritis, too.

She also offered for Grandad to pay for a place of my own. I told her, that was so sweet! The thing is, they give me so much, and I feel guilty he paid for my glasses and is paying for my dental care already! I cannot say I would not love to get out of here! Getting away from my parents would be wonderful. There is something I am looking into on virtual assistants.

Now, about my hair. What needs to be done is first stripping the black dye and getting the cut. Once the dye is stripped, then I can have the three different colors put in. The first is a medium auburn shade. The others are a darker and medium blonde/golden tone. I can e-mail you a pic of my virtual makeover from the Goodhousekeeping site if you PM me your e-mail addresses. I would love to know what you think!

I am going to respond to everything soon. I have been so busy with laundry and such, and was experiencing excrutiating pain Friday morning in my colon. I think it may have been the raw onion I had the night before in some tuna salad I made. The tortilla chips never do that to me, and normally I eat onion cooked. One thing is for sure, I am not going to get behind on my posting again! :lol:

Sincerely,

Jin

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
Quick update on my mom...

Glad she's willing to do the diet. It has got to be especially hard during the holidays. :(

AND one of those bed pillow things that have little arms. It's great to sit in bed and use my laptop now in bed!!! YAY!!!

YAY!!!!

I am reading along and have been all week!

Thanks for the check in Jin. I was wondering how you were doing.

That's great you were able to enjoy a nice conversation with your Grandmother. :D

Link to comment
Share on other sites
confusedks Enthusiast

Jin,

I'm glad you got to have a conversation with your grandmom! That's great! I understand about the generosity becvause I have two very wealthy uncles and they are always giving me stuff. They bought me my car, re-did my romm (cost about $10,000!!!) and still continue to shower me in gifts. I figure at this point, if they offer, I take them up on it. I won't ask, but they do offer.

I'll PM you my email address...I'd love to see it!

It sounds like you have been one busy bee!! I'm jealous!

Andrea,

Thank you! I love my gifts!! There are certain things I would have never asked for for holidays, but now my prioritites have shifted so much, it's really amazing! My mom said to me, "I'm surprised you are so excited about this!" She said i would have normally said, "I don't want that for the holidays...you would buy that for me anyways because it's for my room!" :rolleyes::lol:

Kassandra

Link to comment
Share on other sites
confusedks Enthusiast

Carla,

I have been meaning to ask you for the longest time... How much lemon and water do you use for your lemon water? Do you use the juice of an entire lemon and a 16 oz. glass of water? Thanks!

Kassandra

Link to comment
Share on other sites
CarlaB Enthusiast

Kassandra, I use the juice from a whole lemon, but I think it closer to 8 ounces of water. Then I drink some more water. I am concerned about the effects on my teeth, so I drink the concentrated juice, rinse/drink with more water, then brush. I haven't used the lemon water lately .... I guess I haven't felt bad enough .... I haven't craved it like I used to.

When you mentioned your gifts, I thought it was funny because my kids wouldn't be so excited about a pillow and eye thingy .... so it was funny you followed it up with your mom's comments. But, as you get older, your gifts change anyway ... my daughter in college is just realizing that gifts are a small part of it all .... she had trouble putting together a list.

Jin, that's great that you had a good conversation with your grandma. Maybe instead of housing they can help you with healthcare.

Link to comment
Share on other sites
dlp252 Apprentice

Morning all. Well, I slept pretty well again last night. I'm going to test this out by having the same snack until around Wednesday or Thursday, then switch back to my regular snack of turkey and see what happens.

Jin,

Glad you got a nice talk with your grandmother!! Ha, yeah, I had to majorly clean my livingroom so I could put up decorations...that's what stopped me from decorating last year...I just didn't have the energy to do the cleaning. I'll PM you my email.

Quick update on my mom...

Wow, sounds really uncomfortable! I'm so sorry she has to go through all of this anytime, but especially now!

I just got the best Hannukah gifts ever!!!! OMG!! I got a gel eye mask to help with sinus pain, headaches, etc. AND one of those bed pillow things that have little arms. It's great to sit in bed and use my laptop now in bed!!! YAY!!!

Ooooh, sounds heavenly!

Link to comment
Share on other sites
CarlaB Enthusiast
Ha, yeah, I had to majorly clean my livingroom so I could put up decorations...that's what stopped me from decorating last year...I just didn't have the energy to do the cleaning.

Maybe you should retest the room to see if you cleaned out what was bothering you in there. :):lol:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Oh, my! I'm glad I just looked at my calendar ... my phone consult is today at 11:30, not tomorrow! :)

Link to comment
Share on other sites
dlp252 Apprentice
Oh, my! I'm glad I just looked at my calendar ... my phone consult is today at 11:30, not tomorrow! :)

oooohhh, can't wait to hear about it.

Link to comment
Share on other sites
AndreaB Contributor
Morning all. Well, I slept pretty well again last night. I'm going to test this out by having the same snack until around Wednesday or Thursday, then switch back to my regular snack of turkey and see what happens.

I will be looking forward to more results of the snack test. Glad you had a decent night's sleep. :)

Oh, my! I'm glad I just looked at my calendar ... my phone consult is today at 11:30, not tomorrow! :)

Glad you looked! I'll be looking for your update later.

Jin,

I'd like a picture too. Let me know whether you have my email from the one I sent you last month.

Link to comment
Share on other sites
CarlaB Enthusiast

I just got off the phone with my PA.

She was thrilled with my progress and said I definitely will NOT need IV!!! YAY!

She said I was responding to this combo so well, we'll continue, except we're switching Levaquin to Rifampin. Levaquin is a "super-drug" and she doesn't want to use it unnecessarily. I'm continuing on the Tindamax until I have two months without flaring up from it.

Currently, when I start the Tindamax I drop from 90% down to about 65%. The first month I was on it, it really made me sick.

Anyway, it really doesn't sound like I'll have to be on the meds much longer ... when I'm feeling pretty steadily in the 90% range for two months, I'll come off them and switch to Cowden. :) Maybe I'm getting to the end of this nightmare. :):D

She was happy to hear that Chloe flared up on the Doxy and that it calmed down. She's switching to some other meds for a month, then will most likely be able to switch to herbs the following month. Chloe is seldom having symptoms, just the occasional knee pain or headache, but not nearly as often as it used to be. She wanted to use a different drug this month just to be sure we were thorough. So, hopefully, Chloe will be off the meds in a month. :)

So, all in all, it was a good appt. Next month we see the Dr. in NY.

Link to comment
Share on other sites
AndreaB Contributor

What an exciting report Carla! :D

I'm sure Chloe will be excited too!

Link to comment
Share on other sites
dlp252 Apprentice

Carla, that is amazing news for both you and Chloe!!!!

Link to comment
Share on other sites
ShadowSwallow Newbie

Carla, that's absolutely fantastic!!!!!

Jin,

That's wonderful that your grandmother had a good day and you were able to talk with her. :)

Kassandra,

I'm so jealous! :P Those sound so comfy!

Link to comment
Share on other sites
confusedks Enthusiast

WOW Carla! That's great news!!! Now you're making me really excited to go to my LLMD so I can report back! YAY!

Kassandra

Link to comment
Share on other sites
dlp252 Apprentice
Maybe you should retest the room to see if you cleaned out what was bothering you in there. :):lol:

Um, I'm thinking NOT, lol! :lol: When I say majorly cleaning I mean I picked up all the junk laying all over the floor and I vacuumed. :lol: :lol: That's majorly cleaning to me. :P:ph34r:

Link to comment
Share on other sites
CarlaB Enthusiast

Yeah, well, maybe the toxins were in the junk. :lol:;)

Kassandra, I'm excited for your appt., too. Just think, my first appt. was Jan. 20th this year .... since you're WAY younger than me, you should be doing GREAT by this time next year!

Link to comment
Share on other sites
dlp252 Apprentice
Yeah, well, maybe the toxins were in the junk. :lol:;)

Possibly, but then I do stuff like last night...spilled a HUGE glass of water on the carpet right by the sofa...methinks the mold will get me eventually. :P

Link to comment
Share on other sites
CarlaB Enthusiast
Possibly, but then I do stuff like last night...spilled a HUGE glass of water on the carpet right by the sofa...methinks the mold will get me eventually. :P

You need to take your church up on their offer of new flooring. :) For people to practice charity, someone has to be accepting of it. :) You can pay it forward later.

Link to comment
Share on other sites
Ridgewalker Contributor

Carla,

What wonderful news, for both you and your daughter! Very exciting!

Link to comment
Share on other sites
AndreaB Contributor
You need to take your church up on their offer of new flooring. :) For people to practice charity, someone has to be accepting of it. :) You can pay it forward later.

Yep.

Link to comment
Share on other sites
confusedks Enthusiast

Carla,

I totally forgot to mention how happy I am for Chloe! That's great!

Everyone,

So....are you ready for this......??????????????????????????????

I'M STARTING IV'S TOMORROW!!!!!!! :D:P:D:P:D:P:D:P:D:P

My mom has to pay for everything, but we're going to start tomorrow. We are going to take legal action with the insurance company because their neglect and all kinds of other reasons. So I am finally starting them! Also, the Dr. wants to do 10 treatments...ugh! Last time we did 5, but he wants to do 10 this time for some reason.

I still am going to the LLMD on Friday...so it's all good!

I have been trying to find a place that you can get IV supplies from...such as saline and heparin. I have an rx, but nobody will fill it! I only have until tomorrow to get this stuff figured out, so I am hoping we will get it taken care of.

Kassandra

Link to comment
Share on other sites
dlp252 Apprentice

THAT'S GREAT NEWS KASSANDRA!!!! You have to bring your own supplies?!?!?!? Egads, lol!

Link to comment
Share on other sites
AndreaB Contributor
THAT'S GREAT NEWS KASSANDRA!!!! You have to bring your own supplies?!?!?!? Egads, lol!

Ditto!!

Why in the world do you need to bring your own supplies?!?! :o

Link to comment
Share on other sites
confusedks Enthusiast

Donna,

LOL!! I don't have to bring my own supplies, but I do have to flush the line every day. That requires about 6 syringes a day...4 saline and 2 heparin. Since I have a double catheter, I have to have twice the amount of supplies...lol!

They may flush it for me in the Dr's office, I don't know though. Regardless, we still need supplies for the days I won't be at the Dr's office...like Friday (when we're in N. CA for LLMD) and over the weekend, etc.

Kassandra

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748

    Grammar B
    Newest Member
    Grammar B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...