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

tabasco32 Apprentice

Hello everyone :)

Sort of hot in this part of the country. Maybe too hot. I feel ill today and I think that it could be the heat, or the coffee enyma, or the oatmeal. :huh:

I was just curious if anyone of you experience electromagnetic field sensitivity like I do? I think milk causes it to be worse at times. Anyways glad to see all you doing well and looking great. Need to keep up with reading your post. Take care ladies.

lisa


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
happygirl Collaborator

Rachel, so happy to hear you are doing so well :)

mftnchn Explorer

Well, I went through the stuff on the Marshall protocol my LLMD gave me and my major concerns are that I would have to stop my allergy shots and estrogen/progesterone. I am probably about ready to do the latter, at least my gyn said once I had stopped menstrating it would be time. Seems like I am about there, only two times in 6 months or so.

But the allergy shots...I really don't know about that. I just can't control symptoms with antihistamines (which I can't take except for one) and I have so many inhalents that have been controlled with the shot therapy.

What I understand is that the basic idea is that invasion by bacteria within the cell walls and which destroy the cell wall integrity is the heart of illness. They also keep the immune system from recognizing them and killing them. A form of vitamin D is overproduced (it should be regulated and produced in the kidneys) which makes this process worse and more cells are invaded, etc. Treatment consists of limiting D to a low amount just right for the normal immune system response, taking a drug that blocks angiotension I and helps stop this excess D production and helps the immune system to recognize the bacteria, then taking low dose minocycline. You have to avoid light as well (stimulates D production.)

The whole idea is adjusting things so the immune systems recognizes and kills these bacteria. The treatment is slow, takes several years and there are several phases.

mftnchn Explorer
That's interesting about trauma memory. When I was resolving these issues, it was all about the feelings, not the memories.

Hmm, yes I think that may be a good clarification to make. There is one approach that talks about the memory being a "container." I think its not about changing what happened, that's factual. Its rather about choosing a more healthy response, and an important part of freeing a person to do that is processing the feelings. The cool thing is that then these lessons and new responses help us deal with what happens to us currently that distresses us.

sherry

mftnchn Explorer

Forgot to post about the prescription pancreatic enzymes. I increased my dose from 1 to 2 three times a day with meals. My nausea has gone away since I did that.

What I take has amylase; lipase; protease in an extended release capsule,

Dose Form Description: capsule, extended release

65000 units-20000 units-65000 units respectively.

What I understand is that this is significantly stronger than over the counter versions.

mftnchn Explorer

I'm going to be away for a week starting tomorrow and don't know if I'll have internet access...we'll see. I'll miss you all if I do.

AndreaB Contributor

Have a safe trip, we'll talk to you when you return. :)


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
Hmm, yes I think that may be a good clarification to make. There is one approach that talks about the memory being a "container." I think its not about changing what happened, that's factual. Its rather about choosing a more healthy response, and an important part of freeing a person to do that is processing the feelings. The cool thing is that then these lessons and new responses help us deal with what happens to us currently that distresses us.

sherry

I understood what you were saying. :) It's just typing instead of talking makes things come across wrong ... I was trying to say that what you said makes sense. I didn't actually forget what happened, it's that the "trauma memory" was more about feelings than the memories themselves.

This is a very good clarification and fits my experience perfectly. I've never studied this psychological stuff, I just know from what I've dealt with on my own.

I also find that now things don't shake me to the core emotionally .... I have a better, more reasonable, balanced response.

Have a good trip. I hope you have internet access! it's seems that you're doing okay with the Levaquin.

Which remind me, miamia, how are you doing with the Levaquin.

Lisa, it is not too hot here .... it's been in the single digits up to the 30's. The kids didn't have school yesterday because of the ice and a one hour delay today because of the snow.

The heat really does me in. I can take the sauna just fine, but the outside heat, when we have it lol, does me in.

I'm guessing that in combination with the ongoing cleansing from the coffee is causing your issues.

I do not get EMF sensitivities. Once in a while it will almost hurt to talk on the cell phone, so I'll put it on speaker, but that doesn't happen often (of course, I don't talk on the phone much).

dlp252 Apprentice
Did you change your hair? If not, maybe they are just noticing you look different but can't pinpoint why .... could it be the makeup? I know I look a LOT better with makeup on, LOL.

But then again, my hair has changed in texture and thickness so much so that even the checkout lady at Wild Oats said something about it the other day. It's thick like it used to be, so maybe yours is looking different, healthier and you don't realize it.

Warning...WAAAAY more info than you probably ever wanted, lol:

Well a couple of weeks ago I had a hair appointment. I think she did the same thing as always. The only thing I can think of is that she usually mixes two colors together to get "my color"...she was having trouble getting the colors to dispense, so maybe the mix is slightly different, but it can't be by much. I'd definitely notice if it were lighter...I don't like it lighter, lol. Yesterday someone said it looked "softer", lol. Someone also said I didn't look tired anymore. :lol: Maybe it IS the makeup and people just aren't sure what the difference is. :P

The other thing I'm doing differently (and this MAY have more to do with it than anything), is not shampooing my hair everyday.

A few years ago, I overheard two hairdressers talking about a client who NEVER washed her hair, lol. At the time I thought ick!, but what they were saying was that she rinsed it in the shower every day, but didn't use shampoo and her hair was very healthy. I never even considered that because my hair tends to get greasy if I don't shampoo every day.

After getting tired of the dry look, I decided to try it a couple of weeks ago. I'm not brave enough to NEVER use shampoo, but I've been going every other day, and a couple of times two days without shampoo, but rinsing it off really well in the shower, and just putting conditioner on. That seems to really help it from looking too dry and it doesn't get greasy. Maybe THAT's it, lol.

I haven't discussed these with my doctor yet, but my impression is that malabsorption is still very much an issue, as well as lead and maybe mercury.

Sherry, count me amongst those who will be interested in what the doctor has to say about all this. I know my doctor has me taking Taurine and Tyrosine and magnesium.

I'm going to be away for a week starting tomorrow and don't know if I'll have internet access...we'll see. I'll miss you all if I do.

We'll miss you too!

CarlaB Enthusiast

Donna, I don't wash my hair every day. I was only washing it once or twice a week when it was really in bad shape from being sick, but now I'm doing what you're doing. Back then I never saw anyone anyway, so it didn't matter than I never fixed my hair, LOL.

Now I don't wash it every day, just condition. On days like yesterday where I didn't shower till nighttime (just wore workout clothes and a pony tail all day), I don't even get it wet.

I think it's most likely that you are looking healthier, with the makeup, the hair being healthier from you being healthier, and just your overall "look".

confused Community Regular

Carla and Donna,

That is interesting with the hair, i have to wash my hair every day or i feel dirty. I might have to try just putting condioner in it tho, maybe that way i wont fell dirty lol. I do have pretty healthy hair tho, i only cut it like once an year and dont get many split ends.

paula

mftnchn Explorer

I keep my hair very short because it is fine and thin and this way it has more body and looks fuller. I have been washing most every day although when I am not going out I'll skip a day. I don't normally condiition, I'll have to experiment.

I am seeing Dr. E tomorrow morning and she wants to look at the labs, so I'll post what she says first, and my LLMD later.

confusedks Enthusiast

All this talk about hair washing! LOL! My parents are in the hair industry, and they say not to wash your hair every day...but they do anyway! :lol: LOL!

I don't usually, but I, like Paula, feel dirty if I don't wash it every day. Sometimes if I straighten it (which is RARE these days, lol) then I will wait a couple days, but after the first day, I never wear it down...I wear it in a pony tail or bun.

Speaking of all this...I have a dandruff question. What is the best thing to get rid of it?! I have had it for weeks and weeks and it's SO embarrassing! I have tried tea tree oil, tea tree oil shampoo and it's not working! I also used to use dandruff shampoo (because my scalp was "dry" according to my hairstylist) but that never works either.

mftnchn Explorer

I meant to post this during our discussion of psychological/spiritual approaches. At my last appointment my LLMD mentioned that the infections that I have destroy the integrity of the cell wall. He said just like sexual abuse violates a boundary in a person (referring to the study that I mentioned above).

He suggested that I make it an earnest focus of prayer that the cell walls be restored and the cell integrity healed and restored. I greatly appreciated this comment.

mftnchn Explorer

Carla, I do seem to handling the levaquin pretty well. The one symptom I suspected was nausea which has cleared with the increased enzymes.

I seem to be having mild herx much of the time, but quite mild. I did have some pain for a couple of days but again mostly mild to moderate.

I am still going up on the adrographis too, almost to the top. All my other drops are at the top.

mftnchn Explorer
Speaking of all this...I have a dandruff question. What is the best thing to get rid of it?! I have had it for weeks and weeks and it's SO embarrassing! I have tried tea tree oil, tea tree oil shampoo and it's not working! I also used to use dandruff shampoo (because my scalp was "dry" according to my hairstylist) but that never works either.

Kassandra, my problem with this seems to be allergy to things in the shampoo. Gluten free helped, I try to avoid perfumes as well. Do you get itching as well as flaking?

There is a natural shampoo method but I forget, seems like it is using an egg??

CarlaB Enthusiast

I used to feel dirty if I didn't wash my hair, too. My hair stylist always told me not to wash it daily, but I did anyway.

What happened was that I lived in an apt. with Morgan after Adam and the other kids moved to Ohio until she graduated from HS. This was an apt. in an outbuilding on our old property. Well, the septic system wasn't really designed for someone to LIVE there, so we ended up having to shower at the YMCA about 15 minutes away.

So, our showering never actually coincided with getting dressed and ready to go as we'd just shower at some random time of the day. Also, it was a cinder-block shower with a vinyl curtain, certainly not a posh health club, LOL. We learned then exactly how often it was necessary to wash our hair, LOL. Twice a week was sufficient .... and we didn't wear it up all the time or even get it wet every day. We got really good with hot rollers, straightening, and touching up.

Until then, I washed it every day.

Kassandra, don't know anything about dandruff, sorry. Don't your parents? :P:lol:

Sherry, I'm glad you're doing okay on the Levaquin. Any improvement?

dlp252 Apprentice

I can't even make it until noon without feeling like an oil pit, if I don't wet or wash my hair, lol.

Wetting it in the shower is different for me. I think because it rinses out the dirt and pollution (even without shampoo). I also use a blow dryer to style it...I think that distributes whatever small amount of natural oils are left after the rinsing.

babysteps Contributor

I think Person and Covey makes fragrance-free and gluten-free shampoo and conditioner, including for dandruff

I have normal-to-dry long sorta straight hair, wash it every 2nd or 3rd day. Before I started coloring hair I just put conditioner on the ends; now throughout. With a brush & wearing it pulled back I can even stretch to 4 days sometimes :)

dlp252 Apprentice
I have normal-to-dry long sorta straight hair, wash it every 2nd or 3rd day. Before I started coloring hair I just put conditioner on the ends; now throughout. With a brush & wearing it pulled back I can even stretch to 4 days sometimes :)

Yeah, mine is colored too...gotta cover that grey, lol. I've made it two full days without shampoo, but just wetting it and using and rinsing out conditioner...I may try for more...this weekend might be a good time to try, lol.

Green12 Enthusiast

Sherry, I missed what kind of test this was that you posted the results from?

Sorry they didn't reflect the numbers being more in range. I am also interested to hear what your Dr's interpretation of the results will be.

Regarding the dandruff, didn't Rachel post some scientificness way back, I mean way back, in the thread that said dandruff was a yeast/candida condition of the scalp????? I could have sworn reading something to that effect....

tabasco32 Apprentice

okay all this talk about hair and dandruff is starting to make me feel itch.

confusedks Enthusiast
Kassandra, my problem with this seems to be allergy to things in the shampoo. Gluten free helped, I try to avoid perfumes as well. Do you get itching as well as flaking?

There is a natural shampoo method but I forget, seems like it is using an egg??

I don't get itching...well a little bit, but nothing to speak of.

Kassandra, don't know anything about dandruff, sorry. Don't your parents? :P:lol:

LOL! I asked my stepmom (she is currently IN the hair industry) and she told me to use this shampoo, which I did...but it never helped. ;)

Julie,

I think this is a seasonal thing for me. It has changed in weather a lot here, so I am chalking it up to weather change.

Everyone,

I bought a new protein powder...brown rice. It was DIGSUSTING!!!! :ph34r::o:lol: Seriously, it was absolutely horrific! :lol: I don't know what else I can use. I want to try a different company of brown rice, maybe the same company who makes the egg white stuff.

Blech! Lol!

dlp252 Apprentice

Good luck in your search Kass...I never found any of the rice powders that were very tasty...some weren't as bad as others, but I don't remember any that made me say "yum". :lol:

confusedks Enthusiast
Good luck in your search Kass...I never found any of the rice powders that were very tasty...some weren't as bad as others, but I don't remember any that made me say "yum". :lol:

LOL! The egg white one was totally tasteless to me! I have NEVER had good luck with protein powder, but that one was GREAT! I am so bummed that eggs and I don't get along anymore. :( Oh well!

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. - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

    2. - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

    3. - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

    4. - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors

    5. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test uncertainty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,275
    • Most Online (within 30 mins)
      7,748

    Elizabeth Brown
    Newest Member
    Elizabeth Brown
    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

    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
×
×
  • Create New...