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

Ok. I think I'm ready for the update. Not really much to add to what I already told Rachel.

We arrived Thursday late and got settled in our hotel and in bed around 12. Kids were very tired to say the least. Headed over to Dad's on friday morning. He came out the door with a walker and oxygen. He looked like he'd aged 5-10 years since I saw him 6 months ago. He's lost some weight. He said he's 200 pounds, don't know what he was before but I'm thinking 225 or so.

I spent all my time with him and Mitch asked the hotel friday afternoon if we could take the crib back and forth to my Dad's. They ok'd that so it made it much easier for me to get Seth down for his naps. My Dad's house is not a child's house. Breakable everywhere! Mitch handled the older two kids and Seth spent his days with me, aside from Friday afternoon since I took Dad to dialysis.

We spent our time working jigsaw puzzles. That was one of our favorite things to do together when I was a teenager. He took many breaks and did something else for spurts of time. I finally asked him point blank what was going on with his health. He said among the times he was in the hospital the last 2 months (3-4 times) that one of those he thought he was going to die. He assumed the cancer had spread to his kidney but told me that he didn't know. He's been feeling better the last few weeks and had gone off of his pain meds. He's hopeful that the kidney is starting to regain some function and he was told that that is a possibility.

I called him today to tell him we got in safely and he said his back was bothering him yesterday at dialysis and into this morning. He took a pain med today.

He's hopeful that he'll continue improving and be able to visit in the spring. I'm thinking if it's cancer that that is not likely. We still have the oxygen to consider too. I am assuming it's to help get more oxygen to his blood since his kidney is not working but I'm clueless.

We left while he was at dialysis and headed for the airport. The flights back were much more crowded. On the way down we were all seated together. Into Las Vegas three of us were together and my daughter chose to be the one in front of us. She talked the lady to death that was next to her. After 1 1/2 layover we boarded our flight to Portland. 2 together. Mitch and Talitha were in the middle; Micah, Seth and I were at the back. The flight was late leaving as we were waiting for other passengers from another plane and the accompanying luggage. We pulled into Portland at 2:35 this morning. By the time we got home it was around 4:30. Mitch only got an hours sleep on the plane and he was off to work after we got home. We left nice but cooling weather in Arizona and came home to COLD. It was 33 degrees when we landed and by the time we reached home we had a dusting of snow. We don't get much snow here. In for some freezing weather with a chance of precip tonight making for a treacherous road tomorrow. I hate days like this when Mitch has to be out in it. Some places will probably be a skating rink. Portland is notorious for that.

Glad to be home, a little tired and Seth seems to be running a low grade. Hopefully it will pass quickly and is just a part of teething. To top that off I caught Talitha taking a bit of his baby food fruit this morning as she was feeding him.....then continuing to feed him from the same spoon. I was not a happy camper.

If I have to go down again I will consider going by myself (with Seth). The kids were bored and didn't really want to spend much time with Grandpa. Of course, we have no money to make a return trip down there anyway.

Missed all of you terrible and it took about 5 hours to catch up. :blink:


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
Missed all of you terrible and it took about 5 hours to catch up. :blink:

We missed you, too. Five hours!! Wow!

I'm glad you had a nice visit with your dad.

dlp252 Apprentice
I'm anxious for Donna to get tested too and seeing what the results are.

Ha, well I ACTUALLY called the BioSET people today, but they had an answering machine on...I left my name and number and a message that I wanted to set up an initial BioSET appointment. No one called back. :(:P I was going to make the appointment for the week after Christmas...oh well, lol, I tried.

AndreaB Contributor
Welcome back Andrea!!

We missed you! :wub:

Thanks Rachel.

I bookmarked that map also. :)

dlp252 Apprentice
Missed all of you terrible and it took about 5 hours to catch up. :blink:

And a great job you did at it! I hate to think what it will be like when I get back from my vacation, lol. I may try to log at least once or twice from the ship...we have several sea days where there's not much to do except relax...course getting a computer on sea day will be a challenge, lol.

It sounds like you had a very nice time with your dad. Dads are so funny sometimes...mine would hardly talk about anything...but in the last few years of his life, he started to tell me more about how it felt and stuff. I think sometimes they don't want to be a burden and sometimes it's just machoness, lol. Anyway, I'm praying for time in the spring for you and him!

jerseyangel Proficient

Welcome home, Andrea. Glad you all got home safe and sound :)

Judyin Philly Enthusiast

ANDREA WELCOME HOME.

GLAD YOU COULD SPEND SOME TIME WITH YOUR DAD.

AGREE ON GOING BACK ALONE. THAT'S WHAT I'D DO WITH MOM FOR SOME QUALITY 1 ON 1 TIME.

BABY WOULD BE A JOY TO HIM.

I GOT THIS FROM A PREVIOUS POST YOU MADE 2 PAGES BACK..

Someone mentioned that some Chiro's can sign for it. Have you checked that out?

MY CHIRO SAID SHE CAN SIGN OFF ON IT IF I'M IN THEIR INSURANCE PLAN WHICH I AM NOT SO I PAY OUT OF POCKET FOR MY APTS. SO SHE WOULDN'T WRITE A SCRIPT FOR ME.

SO GLAD TO SEE YOUR HOME SAFE AND SOUND.

JUDY


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
AGREE ON GOING BACK ALONE. THAT'S WHAT I'D DO WITH MOM FOR SOME QUALITY 1 ON 1 TIME.

BABY WOULD BE A JOY TO HIM.

Seth and Grandpa got along well. Seth loved playing with the oxygen tubing.

Green12 Enthusiast

Andrea, sounds like you had a nice trip and visit with your dad :)

Donna, omgosh, when do you leave for your cruise? I totally missed when you said :ph34r:

Hmmm, about the chiropractor signing off on the Igenex test. Igenex told my bioscan paractitioner specifically an MD, DO, or psychiatrist ONLY.

Rachel--24 Collaborator
Ha, well I ACTUALLY called the BioSET people today, but they had an answering machine on...I left my name and number and a message that I wanted to set up an initial BioSET appointment. No one called back. :(:P I was going to make the appointment for the week after Christmas...oh well, lol, I tried.

Donna, BioSET lady #2 called me today. They want me to put 2 bowls of water in the house....one in the living room and one in my room. Then I'm suppossed to bring the water with me to my appt. on Sat.

She said that BioSET lady #1 wants her to check the water to see whats in my "environment". This should be interesting.... I think my environment is pretty clean....except for the dust in the heater. <_<

Anyways she said that BioSet lady #1 is gonna see me next week and do more testing since I havent improved yet....especially after the last 2 treatments for chemicals. She said that its never happened before.....that BioSet lady #1 has never had a patient who didnt respond to the treatment. :huh:

I'm finding it hard to believe that I'm the only one whos not gotten better. I dont think I'm the worst case shes ever seen. <_<

At least I didnt *think* I was. :unsure:

Anyways I still have faith in the BioSET lady but I'm thinking if I have untreated Lyme, co-infections, high levels of mercury and other heavy metals.....how can I really respond to treatment with all this still going on??

It would seem to me that those are the "reasons" why I'm reactive to everything....and those "reasons" are still *there*....and still making me overly toxic.

What do I know though...I'm just the BioSet "patient". :rolleyes:

Right now its not looking good for "Rachel...the aspiring BioSET lady". :(

Oh well....we'll see what happens next. I have many appt.'s next week. :D

I will have scientificness GALORE!! :lol:

dlp252 Apprentice
Donna, omgosh, when do you leave for your cruise? I totally missed when you said :ph34r:

Hmmm, about the chiropractor signing off on the Igenex test. Igenex told my bioscan paractitioner specifically an MD, DO, or psychiatrist ONLY.

FRIDAY!!! I leave Friday...at 4:30 a.m., lol. Actually my plane leaves at 6:20, but the taxi is picking me up at 4:30 (well, hopefully).

And, the thing with the chiropractor...some are MDs too...I think that's why they would be able to. I've seen two that were also MDs and could prescribe.

AndreaB Contributor
Oh well....we'll see what happens next. I have many appt.'s next week. :D

I will have scientificness GALORE!! :lol:

See, you go from hardly any appointments to many. I like how that worked out. Bioset #1 must be back from vacation next week. :)

dlp252 Apprentice

Rachel, you aspiring BioSET lady you, lol...the bowl thing sounds, um, weird, lol, but I suppose it makes sense...the water will "catch" whatever is floating around in there. What about at your mom's house too?

I also find it hard to believe you are the only one who hasn't responded...just hang in there kid, they'll most likely have TWO once I get in to see them. :lol: I left work at 1:30 today (an hour early, a bonus leaving early cuz everyone in the office except me got to leave early the day before Thanksgiving), so they may have tried to call after I left.

AndreaB Contributor
FRIDAY!!! I leave Friday...at 4:30 a.m., lol. Actually my plane leaves at 6:20, but the taxi is picking me up at 4:30 (well, hopefully).

That's coming up so quick!

You'll have such a nice, relaxing time. Just what you need. :D

miamia Rookie
Thanks Rachel.

I bookmarked that map also. :)

Welcome back andrea- it was not the same without you. I had to remember all by myself to go get my bloodwork done - no helpfuul reminders!!!Good thing it was early in the day when my brain fog is not that bad!!

Miamia

Green12 Enthusiast
Donna, BioSET lady #2 called me today. They want me to put 2 bowls of water in the house....one in the living room and one in my room. Then I'm suppossed to bring the water with me to my appt. on Sat.

She said that BioSET lady #1 wants her to check the water to see whats in my "environment". This should be interesting.... I think my environment is pretty clean....except for the dust in the heater. <_<

This is very interesting Rachel. My bioscan people wanted to do this years ago, but we never got around to it. The water absorbs the "environment" and then they test it with the machine to see what resonates in it. At least that is how it was explained to me.

When can we start calling you the BioSet Lady :lol::lol::lol::lol:

I look forward to the scientificness :D

Donna, how exciting!!! I will make a strong mental note about your departure on Friday, but just in case can you drop a reminder here and there before then?? :lol: You know, brain fog :ph34r: I want to make sure to give you a big send off :D

Welcome back andrea- it was not the same without you. I had to remember all by myself to go get my bloodwork done - no helpfuul reminders!!!Good thing it was early in the day when my brain fog is not that bad!!

Miamia

:lol: Mia

Yeah, Andrea you are in trouble, you have the heinous duty of keeping everything straight for all of us on here. We would be lost without you :blink:

AndreaB Contributor
Yeah, Andrea you are in trouble, you have the heinous duty of keeping everything straight for all of us on here. We would be lost without you :blink:

I'd better get myself organized. :P The problem is you guys don't always tell me when your appointments are.

rinne Apprentice
The problem is you guys don't always tell me when your appointments are.

Yes, because they can't remember their appointments which is why they need you to remind them. :lol::lol::ph34r: You may have to add another responsibility, reminding them to remind you to remind them. :lol:

So nice to have you back Andrea. :)

Rachel, that puzzles me, why would you be the only person she hasn't been able to clear? Do they think there is something in your environment that is stopping that and that the water will tell them? Sorry you probably explained that really well already but I am fading this evening, so sleepy. :blink:

Donna, I hope you have a fabulosa time on your cruise. :)

Rachel--24 Collaborator
Rachel, that puzzles me, why would you be the only person she hasn't been able to clear? Do they think there is something in your environment that is stopping that and that the water will tell them? Sorry you probably explained that really well already but I am fading this evening, so sleepy. :blink:

I didnt explain it at all really....cuz I'm not too sure myself. :unsure:

Julie explained it better. Yeah...I guess BioSET lady #2 is gonna test the water when I go see her on Saturday. BioSET lady #1 is gonna do some other testing (I think un-related to the water?) when I see her next week.....I guess to try to find out why I'm not noticing improvement.

I actually didnt think much of it...I figured it was too soon to notice improvement. I just happened to mention it to #2 last Saturday....I was asking when I'm suppossed to feel better??

Remember Julie mentioning that there might be "clouds" while I'm going through the treatments??? Well thats what I was asking about....if I should feel bad before I get better?? The lady said yeah....its common to feel bad after the treatment but then it clears and you should feel better. I told her "Oh....well I dont get to the feeling better part. :unsure:"

So I guess I should have been noticing improvement but I just havent. :(

Apparantly they discussed it and are now gonna try to figure out whats wrong...hence the water thing and other testing.

I think I'm just broken...maybe I cant be fixed. :(

I dont think I could be the *only* one though....I'm sure there have been others who didnt get "cleared" initially.

Maybe this is backwards....and the Lyme and mercury need to be dealt with first. Thats what my Dr. said....he said to *not* continue with the Bioset treatments right now because they wont work if I have Lyme and its not treated yet.

Rachel--24 Collaborator
Ha, well I ACTUALLY called the BioSET people today, but they had an answering machine on...I left my name and number and a message that I wanted to set up an initial BioSET appointment. No one called back. :(

Donna....whenever I've called them and got the machine I've just called back later. I hate leaving messages...usually the receptionist girl will answer at some point. I'm not too suprised that she didnt call you back though. Its the same girl who didnt schedule all my appts. when I first asked her to. :lol:

AndreaB Contributor
Maybe this is backwards....and the Lyme and mercury need to be dealt with first. Thats what my Dr. said....he said to *not* continue with the Bioset treatments right now because they wont work if I have Lyme and its not treated yet.

Another puzzle to figure out. The guy that has seen lady #1. Did he say what order his treatment was?

Rachel--24 Collaborator
Yes, because they can't remember their appointments which is why they need you to remind them. :lol::lol::ph34r: You may have to add another responsibility, reminding them to remind you to remind them. :lol:

:lol::lol:

Rinne....ITS TRUE!! :ph34r:

I couldnt tell Andrea my appt. times because I'd forgotten them. :rolleyes:

Now I have everything written down....its hanging on the fridge. :)

Rachel--24 Collaborator
Another puzzle to figure out. The guy that has seen lady #1. Did he say what order his treatment was?

Hmmmm...good question. <_<

I believe he was going to BioSET first though.....because she was the first to tell him he had Lyme. His Dr. had referred him to her for his allergies but in the initial testing she found that he tested positive on the Lyme panel.

I think it took him awhile to confirm what she had told him...through Igenix. I'm pretty sure he was seeing her for all of his intolerances in the meantime. I dont think he had chemical sensitivities though...I think mainly food and supplements was what he was getting treated for. Thats what it sounded like when I read his website. He said he was reactive to nearly all foods and supplements.

He posts on the Lyme message board. Lymetoo said she knows him from that board. I should probably try to contact him and ask about this stuff. On his website he refers to lady #1 as his "miracle worker".....so I'm assuming her treatments have helped him. I think he might still go to her sometimes.

Rachel, you aspiring BioSET lady you, lol...the bowl thing sounds, um, weird, lol, but I suppose it makes sense...the water will "catch" whatever is floating around in there. What about at your mom's house too?

Donna....I'm only doing this at my mom's house. I gotta leave the water out for 3 days before my appt. I already put it out.....it should contain enough of my "environment" by Saturday. :D

AndreaB Contributor
Donna....I'm only doing this at my mom's house. I gotta leave the water out for 3 days before my appt. I already put it out.....it should contain enough of my "environment" by Saturday. :D

I'll be curious to see what this turns up.

I'm running on low right now...zzzzzzzzzz........Seth is still down for his 2nd nap and it is only about 1 hour until his normal bedtime. I'll be up late with him.....one bad thing about crazy flight times. :(

Rachel--24 Collaborator
FRIDAY!!! I leave Friday...at 4:30 a.m., lol. Actually my plane leaves at 6:20, but the taxi is picking me up at 4:30 (well, hopefully).

WOOHOO!

Donna, we will miss you but I know you'll be having such a great time. I'm jealous...its probably alot warmer where you're going.

I'm gonna have to go eat my ice cream in the bathtub tonight.....so I can enjoy it without going numb. :P

Hi Evie. :)

I'll be curious to see what this turns up.

Its gonna turn up dust. :lol:

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    2. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    4. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Patiently Waiting to See Results

    5. - ElenaM posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
    • ElenaM
      Hello everyone. I am Elena and am 38 years old. I suspect I have a gluten intolerance even if my celiac panel is ok. I have the following symptoms : facial flushing, Red dots not bumps în face, bloating abdominal distension, hair loss, depression anxiety even with meds and even bipolar. Fatigue extreme to the point of not being able to work. All of these after I eat gluten. Could I have non celiac gluten sensitivity? Thanks anyone else with these symptoms?
×
×
  • 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.