Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I actually have the dryest,curliest ,frizziest hair ever and I must admit-in this heat I'm struggling to contain it!It keeps growing bigger and bigger :lol: (big hair-not a good look)

:lol::lol:

No Nikki...Big hair went out a long time ago. :lol:

I remember the days when I wanted my hair to be big. What the heck was that all about??? Must have been an 80's thing....glad its over cuz its NOT easy to make my hair BIG. :P

Once again, thanks for all the updates Vincent. What would we do w/out our R-Ville hero?? :)

I couldnt wait to get home and check out Tanyas thread...I've been thinking about Megan all morning. This is the bestest news...I'm soooo happy things are going smoothly. Not over yet though so keep those prayers coming. :)

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
Canadian Karen Community Regular
Canadian Karen
Posted

I'm gonna give my little hair tip for the day:

My hair and scalp are notoriously dry (considering I have D 20-30 times a day, obviously I would have trouble with dry skin/dry scalp! LOL!)

Anyway, here is what I found worked for me, after several failed attempts with different products.

Get a bottle of Infusium 23 Leave-In Treatment and add 25 drops of Tea Tree Oil into it - shake well. After every shower, spray this directly on your scalp and throughout your hair. What happens next is best described as "heaven"..... What an awesome spa feeling, wonderful tingling feeling that isn't overwhelming, just very relaxing and within a few days, dry scalp, dry hair was immensely improved......

Contacted Procter and Gamble to check on gluten-free status of Infusium - got the typical CYB answer, but they don't directly add gluten, but can't guarantee suppliers, yada, yada, yada........ I can tell you that I have not had any problems with it, and usually my scalp breaks out whenever anything gluten touches it.....

Hugs.

Karen

jerseyangel Proficient
jerseyangel
Posted

Thanks, Karen--I may try that. My scalp isn't dry, but my hair is. I'm trying to grow it a little bit, and want to keep the ends from getting dry and dull. Do you leave this mixture in, or rinse it out?

I just re-read your post, and see that it's a leave-in conditioner. Just answered my own question! Thanx, Karen :D

VydorScope Proficient
VydorScope
Posted

MEGAN UPDATE !!

TUESDAY, JULY 25, 2006 12:30 PM, CDT

Tanya called with another update: Everything is still going really they are in the process of repairing the VSD (which is the hole in the heart). They have her on the by pass machine. They still have to replace the shunt and enlarge the pulmonary arteries (not sure if this is 1 or more than 1, sorry, I just don't have any medical sense). She still has a long way to go, but thankfully, she is doing so well.

Cotrena

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Purple, glittery bats with hair avoidance....yes, I can handle those! :)

:lol:

Susan, glad you've given in so that Chelse can have her pretty, purple, glittery bats flying around Rachelville.

Hey...if I've gotta deal with the temp. never rising above 85...I'm pretty sure you can handle a few glittery bats. :P

Soooo....now we've got glittery bats, dingos, Auxigro-detecting geese and grass fed cows. I'm anxiously awaiting the arrival of our cute and magical koalas. :D

I've decided I would like to be a bum with Donna and Sally. This is actually a life-long dream of mine and it would be cool if I can be a bum on my "off days". Does a President have "off" days?? :unsure:

Hmmm....what the heck?? I'm President so I just decided that I do have "off" days and on those days I'm requesting to share in bum duties. :D

I also wanted to add that my thoughts are with Susan and her family today as well as for Megan and her family. Thanks for the latest update!!

Good news!!

nikki-uk Enthusiast
nikki-uk
Posted
I'm gonna give my little hair tip for the day:

Get a bottle of Infusium 23 Leave-In Treatment and add 25 drops of Tea Tree Oil into it - shake well. After every shower, spray this directly on your scalp and throughout your hair.

Top tip Karen!

Hubby gets chronic dry scalp-never connected to the whole malnourished thing!

Mmm, there may be a junior position for you Karen in R-villes salon :lol:

Oh,-and for all you mums out there

Tea Tree Oil is excellent for keeping the dreaded nits away!! :lol:;)

jenyanderson Newbie
jenyanderson
Posted
Well, Jeny, I guess I'm about 80% Celtic, 15% English, 5% German. It was all so long ago, even the German part; they didn't come over until 1750. Important to note: They ALL settled in the SOUTH!!!!!

Praying for Megan.

Cissie

Mine all settled in the south too. One set were peanut farmers in north Texas. The other set were ship builders out of Corpus Christi, Texas. My married last name is Anderson (Scottish) my maiden name was Gaines, and the Grandparents were O Donnelly, Catchings, Simpson, and Gaines. My paternal grandfather was the German. He came over when he was 3.

MEGAN UPDATE !!

Thanks Vincent on the updates!!!!

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Hmmm....what the heck?? I'm President so I just decided that I do have "off" days and on those days I'm requesting to share in bum duties. :D

I also wanted to add that my thoughts are with Susan and her family today as well as for Megan and her family.

Rachel--*bum duties*?????? What does a bum have to do, anyway :blink:

I did PM Susan yesterday, telling her I'd have her in my thoughts today.

VydorScope Proficient
VydorScope
Posted

WOW!!!

TUESDAY, JULY 25, 2006 02:05 PM, CDT

Just got word from Nashville, the surgery is over and Megan is doing really well. The cardiologist had came out and talked to Jarod and Tanya. He told them that the surgery went really well. The surgeon had just came out and said that they were able to do everything that they had wanted to do and that he was very pleased. Her oxygen saturation level was 100% (which is what normal is). Now is the wait and see process. They will have to let her body heal and get regualted. Prayers have definitely been the power source today.

They would transfer Megan up to PICU. After she got settled there, Jarod and Tanya could see her. Tanya anticipated that this should take about an hour or so.

Thanks so much to everyone for all of their prayers. I know I appreciate them for my beautiful little neice, and her parents even more so than me.

Cotrena

Rikki Tikki Explorer
Rikki Tikki
Posted

Karen:

Are you serious that you have D 30-40 times a day? I am really worried about that, unless your are being silly

Canadian Karen Community Regular
Canadian Karen
Posted

I kid you not....... <_<

Rikki Tikki Explorer
Rikki Tikki
Posted

Karen:

What does the doctor say about all of that? That really does not sound good at all. How long has that been going on?

Camille'sBigSister Newbie
Camille'sBigSister
Posted
WOW!!!

YEAY!!!!!!!!!! God is Good!!!!!!!!!!

Thanks, Vincent! I'm gonna stay on this string and wait for updates, instead of switching back and forth. God bless you!

Keeping my prayers going for wee Megan.

SUSAN, we love you! I sent you a pm.

Cissie

penguin Community Regular
penguin
Posted

Vincent isn't right online right now, but there is an update:

I just talked to Ms. Debbie (Jarod's mom), and she had just gotten to see Megan. She said she looks really good; nothing like the last time. Thanks to everyone that has said prayers for her today.

Cotrena

:D

Hope you don't mind, Vincent, we're all on pins and needles!

mouse Enthusiast
mouse
Posted

Rachel. I just got off the phone to my compounding pharmacy and they have not heard of ketotifen. They were going to contact the compounding company they use and see if they have. I said that I would contact you for your phamachist name in California. I am not doing well and just don't have the energy to hunt through all these pages for the info. Could you PM me with his name and phone number. My GP wrote me an RX for it, but he had not heard of it either. Thank you.

VydorScope Proficient
VydorScope
Posted
Vincent isn't right online right now, but there is an update:

:D

Hope you don't mind, Vincent, we're all on pins and needles!

Thanks! Now that Im home form work I have to actually get up form the computer and hanlde stuff :lol:

Jean-Luc Rookie
Jean-Luc
Posted
Vincent isn't right online right now, but there is an update:

:D

Hope you don't mind, Vincent, we're all on pins and needles!

After a long day, that is great news about Megan!

Big Hair, damn the 80s are coming back to haunt me. Although, I really miss the music. :blink: Can hear it now, Husker Du, Seven Seconds, Depeche Mode, early U2, New Order, Bauhaus, etc. :D

Camille'sBigSister Newbie
Camille'sBigSister
Posted
Karen:

What does the doctor say about all of that? That really does not sound good at all. How long has that been going on?

KAREN, Sally is right. Does your doctor even know? It sounds as if you should be in a hospital!

Cissie

Jean-Luc Rookie
Jean-Luc
Posted
KAREN, Sally is right. Does your doctor even know? It sounds as if you should be in a hospital!

Cissie

Ok, missed that earlier, Karen, please go to the doctor, please.

Canadian Karen Community Regular
Canadian Karen
Posted

My doctor is very aware of it. We did the 24 hour stool collection (boy, that was fun, pooping into a paint can) and it turns out that the volume of diarrhea I have is more than double the amount of the "high end" diarrhea volume numbers of most people.

How long has this being going on? Over a decade.

Also, when they recently did the barium test, the technician said I was the quickest "rapid transit" person he had ever seen, meaning 20 minutes waiting, got up on the table to take the second picture, and the stuff had already gone straight through me.

Prednisone did absolutely nothing to correct the problem. I go for the biopsy again on August 16th to see if there has been ANY villi improvement at all. We are hoping there is since the recent bloodwork numbers showed my antibodies at 13 - well within range.

Personally, I think my ongoing problems are a direct result of the collagenous colitis that we can't get under control, not the celiac disease, but I guess the results of the villi will give us a better understanding.

Also, I seem to be having more back problems and I have found a correlation between when my bowels are too full (of water and gas) and back pain. When my back is bad, it feels like something is pressing up against the nerve and I could barely walk, but after doing some postural positioning on the floor, getting things worked through my system, the running to the bathroom for the ultimate "explosion" with massive amount of water and gas, then I feel immediate relief not only in my stomach but also my back. So I am convinced that my bowels (or something else) is pressing up against my spine. I will talk to doctor about it when I go in on the 16th.

Now you know why he has labelled me as "refractory", but I haven't resigned myself to that yet......

Oh, the GI is the top GI specialist at St. Michael's Hospital, here in Toronto. Apparently, he's one of the best in the country...... I definitely am a mystery to him..... <_<

That's what I love about you guys, I can always count on the people here for support and love!

Hugs.

Karen

Camille'sBigSister Newbie
Camille'sBigSister
Posted

Oh, Karen, how awful! I'm so sorry! Does this go on all night too?

I don't really know what collagenous colitis is, but it sounds God-awful! :ph34r:

Cissie

Guest Robbin
Guest Robbin
Posted

Good lord, Karen, I thought my 15-16 x a day was horrendous before I was gluten-free!! Do you have bleeding bowels> I had so much bleeding from the irritation, I cannot imagine what hell you must go through on a daily basis and with a large family, too. I will certainly be praying for you and for the drs. to get this under control. Maybe the histamine free diet plan could help you too? If you don't get results from the drs., I would try what some of us are doing and investigate the histamine link. Thank you so much for the hair tip btw-I have the severe dry scalp too. I will definitely try this-I already have the tea tree oil.

EDIT -FOR EASE OF TOPIC DISCUSSION

Lisa Mentor
Lisa
Posted
My doctor is very aware of it. We did the 24 hour stool collection (boy, that was fun, pooping into a paint can) and it turns out that the volume of diarrhea I have is more than double the amount of the "high end" diarrhea volume numbers of most people.

How long has this being going on? Over a decade.

Also, when they recently did the barium test, the technician said I was the quickest "rapid transit" person he had ever seen, meaning 20 minutes waiting, got up on the table to take the second picture, and the stuff had already gone straight through me.

Prednisone did absolutely nothing to correct the problem. I go for the biopsy again on August 16th to see if there has been ANY villi improvement at all. We are hoping there is since the recent bloodwork numbers showed my antibodies at 13 - well within range.

Personally, I think my ongoing problems are a direct result of the collagenous colitis that we can't get under control, not the celiac disease, but I guess the results of the villi will give us a better understanding.

Also, I seem to be having more back problems and I have found a correlation between when my bowels are too full (of water and gas) and back pain. When my back is bad, it feels like something is pressing up against the nerve and I could barely walk, but after doing some postural positioning on the floor, getting things worked through my system, the running to the bathroom for the ultimate "explosion" with massive amount of water and gas, then I feel immediate relief not only in my stomach but also my back. So I am convinced that my bowels (or something else) is pressing up against my spine. I will talk to doctor about it when I go in on the 16th.

Now you know why he has labelled me as "refractory", but I haven't resigned myself to that yet......

Oh, the GI is the top GI specialist at St. Michael's Hospital, here in Toronto. Apparently, he's one of the best in the country...... I definitely am a mystery to him..... <_<

That's what I love about you guys, I can always count on the people here for support and love!

Hugs.

Karen

Karen

For years I was suffering from cronic back pain, lower back. Then, I was dx with IBS and the DR. said that it was two things going on and unrelated. Don't go to him anymore. Since gluten free, guess what....no more back pain, unless big time glutened.

Don't know if that helped. You know more about all this stuff then me. But I hope you do better soon.

Lisa

Camille'sBigSister Newbie
Camille'sBigSister
Posted

My head is killing me - bad migraine. Guess I'd better use one of those adorable suppositories and pass out. :(

Love and prayers to all. G'night.

Cissie

Rikki Tikki Explorer
Rikki Tikki
Posted

Ok, I have asked Scott to put my real name on, it's Tavi. I had put Sally when I first signed up because my name was so weird and I don't know, I just figured now that I am comfortable with all of you, what the heck, so it's taken me about 3 years, does it really matter? Anyway, Tavi is my real name, so can I still be the bum, huh can I?

Karen: I am so sorry about you going through that. I can't imagine how your body even holds up to all of that. Before my doctor put me on prednisone last year for something else, I couldn't stop the D but it was no where near as bad as yours. Anyway, I have held up pretty well since then. I think if your villi is back to normal they need to figure out why in the heck the D won't stop. :blink: My goodness, please don't let them mess around with this. It will just destroy your body, think of all the nutrients and vitamins you are not getting! <_<

Cissie: I hope your migrane is gone. I have only had about 5 of those in my life and they are awful :(

C.C. your little one is so cute, I just want to kiss her cheeks :D

Susan: How hot is it at your house? It's been 113 here the last few days B) It's really hot!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,310
    • Most Online (within 30 mins)
      7,748
    Patty95
    Newest Member
    Patty95
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      diagnostic testing variance

      By Scott Adams · Posted

      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      diagnostic testing variance

      By KDeL · Posted

      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
×
×
  • Create New...