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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

mftnchn Explorer

Hi, another quick drive by. Good appointment today with Dr. E. She said overall there is improvement, and a half dozen or so of the supplements are no longer needed. Major stressors are three bugs: babesia (the #1 problem), chlamydia pneumonie, and mycoplasma, and the heavy metals. Parasites and yeasts were fine, digestion and other things mostly better than before.

Enula tests very well for all three infections, but not taking it with zithromax though it does work well with the andrographis. So we'll see what my LLMD wants to do. She said looks like based on ART that I would have allergic reactions to Mepron.

All for now,

Sherry


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
NutHouse! Granola Co.
Holidaily Brewing Co.



Celiac.com Sponsor (A8-M):
Skout Organic


  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor

Sounds like a good appointment Sherry. :)

CarlaB Enthusiast

Darn, Sherry, Mepron is so yummy! :P

miamia Rookie

hey all-

I have just been reading along. I am still having a really rough time. I think i have to change my gastro doc. He is just way to busy and never gets back to me and both my doctor and I are frustrated. I have to change my meds and I am going to start this new one today for the gut motitlity. I feel like I lkeep going back to square one , but in worse shape then when I started.

Miamia

aprilh Apprentice
Does it matter what kind of vit a drops. Also what it the immune enhancer supplement. I would love to try this to help mine. They have been really bad lately. Also how much tea tree and eucolyptus. you can pm the info if want to.

paula

Paula,

Priority One Bio Vegetarian (Immune System Support) she said to take 2 every 3-4 hours. This is a good hefty dose to be used during infection or if you are having trouble kicking a virus.

5 drops of Vit A. - I can post the brand when I get home. She said the Vit A dries up the mucous membranes. I only do this high dose for 5 days.

5-10 drops each of the tea Tree and Eucolyptus and inhale in steamy water 2 times per day. Oregano Oil or Thyme are good too. Basically antimicrobial essences.

I will get more info on the machine that she used because that really kicked it in the butt!

Hi, another quick drive by. Good appointment today with Dr. E. She said overall there is improvement, and a half dozen or so of the supplements are no longer needed. Major stressors are three bugs: babesia (the #1 problem), chlamydia pneumonie, and mycoplasma, and the heavy metals. Parasites and yeasts were fine, digestion and other things mostly better than before.

Enula tests very well for all three infections, but not taking it with zithromax though it does work well with the andrographis. So we'll see what my LLMD wants to do. She said looks like based on ART that I would have allergic reactions to Mepron.

All for now,

Sherry

Sounds like a good appointment! Glad there is improvement!

AndreaB Contributor

Mia,

Hope the new med works for you. Sorry you're still feeling lousy. :(

Keep us updated as you are able.

:wub:

jerseyangel Proficient
hey all-

I have just been reading along. I am still having a really rough time. I think i have to change my gastro doc. He is just way to busy and never gets back to me and both my doctor and I are frustrated. I have to change my meds and I am going to start this new one today for the gut motitlity. I feel like I lkeep going back to square one , but in worse shape then when I started.

Miamia

I'm sorry it's still so rough for you, sweet lady. You're in my thoughts :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
GliadinX



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


Rachel--24 Collaborator

I'm so frusterated with the stupid CDSA test!! :angry:

This test is the worst for someone who's got C....maybe heinous would be a more accurate description. :P

I finally started the test last Friday....then completed day two on Saturday. I felt like I was on a roll...until Sunday....which is when I had the tiniest BM ever. :rolleyes:

Of course day 3 is the day that has 4 containers that need to be filled. So yeah....it wasnt enough. :(

Since then...nada.

I dont even know if its acceptable to have a day 4....but I just didnt have a big enough sample on day 3.

This sucks!! Im gonna have to call the lab and ask them if its ok if this turns into a month long project or something. :rolleyes:

Whats gonna suck even more is if I have to start the whole test over again!! OMG....that would be heinous for sure.

I'm wanting to move on from this so I can take my OAT test (which is just sitting here waiting) but I'm just so freakin stuck on the CDSA right now. Major bummer! :angry:

I been eating cheese all week. Regular block cheese. :ph34r: You guys think its making my C worse??

Back at the beginning of the thread I ate a whole big block and ended up with 2 weeks of C...I was in tears and the whole thing was quite dramatic. This time there was no racheling going on (imagine that :P ) but still...could it be enough to mess me up??

Yeah....I know....its not too smart of me to try reintroducing cheese while I'm taking this test....but I thought it might bring the yeasties out.

Its obviously not working like I planned cuz now theres not much of anything coming out. :unsure:

Ok...so maybe I just tried to justify my reasons for eating cheese. The truth is I just really WANT it!! :lol:

Rachel--24 Collaborator

Also, I have to say that this process has made me realize how much my enzymes were helping. I'm not able to take them while doing the CDSA and for the first time in months I'm feeling bloated and really stuffed after my meals.

It always feels like I'm eating too much (well...ok I do tend to overdo it a bit) but the whole time I was taking my enzymes I wasnt feeling this way. I had forgot all about it!!

I was visiting my friend the other day and I said "Do I look sick to you?" I have to say that to her almost everyday....its just a habit thats been going on for like 5 years now. :lol:

So she goes "No...but your tummy looks fat....you dont look sick...you look pudgy". :lol:

Its because I cant take my enzymes!! My stomach was staying flat no matter how much I ate the past few months...now the bloatedness has come back with a vengeance. :o

The other thing is that I've been using the magnesium sulfate cream (epsom salt) consistently for a few weeks now. I put it on several times a day and I feel less toxic...even when I'm eating bad foods. :huh:

I wasnt getting this much benefit from the baths and I'm wondering if its because of the chlorine. <_<

I know the water has lots of chlorine because there have been times that I could smell it pretty strongly.

Anyways, I love the cream....plus it doesnt dry my skin like the salt baths...the cream is smooth and moist like lotion. :)

AndreaB Contributor

Rachel,

Don't know about the cheese. Dairy can constipate some people and it's probably not helping you.

Hope you don't have to start the test over. :(

confused Community Regular

Rachel,

Im sure the cheese is not helping at all lol. I miss my cheese so bad. I need to just break down and orxer those enzymes if i can have cheese and soy again, but i keep forgetting to order them lol Ok back to you lol. Could u eat some prunes or something after the cheese to help out lol. Or drink some kind of the many juices out there, it would bring out the beasties and make u use the bathroom. Im right there with you and the C. More so when i have to go poo for test lol

April,

Thanks for that info. I am going to look into it later on tonight.

Everyone,

Still havent got an shower filter. But today i skipped my bath and just sponge bathed with bottled water and i felt so much better. So now i know it is the chlorine that is hindering me all over again.

Now i guess i have to get an filter head, get vit a drops, enzymes and my brain back and ill be good to go lmao.

paula

CarlaB Enthusiast

Rachel, didn't ice cream keep you regular? I'm thinking it's a good excuse for Racheling some ice cream.

Paula, we got a whole house filter .... it's great! I've been showering lately at the health club .... they have a pool, so the kids go to the pool, I work out, then I go to the pool, then we all shower. It's so much easier than taking turns at home. :D But their water has chlorine ... not to mention the chlorine in the pool. :ph34r:

I've been feeling about 90% on these new meds finally. I'm still taking just a half a zith .... if I take the whole thing, major fatigue so bad I want to lie around all day. Just doesn't seem worth the drop from 90 to 75%.

miamia Rookie
I'm sorry it's still so rough for you, sweet lady. You're in my thoughts :)

Patti-

thanks s so much for the kind words it means alot

Rachel--24 Collaborator
Rachel, didn't ice cream keep you regular? I'm thinking it's a good excuse for Racheling some ice cream.

Yeah...the ice cream had me regular. It balanced stuff out....but at the same time my brain function was way down....and I was in my own world...just me and my ice cream. :P

I didnt even realize it until I had to give up the ice cream...the Dr.'s kept telling me and it took awhile for me to take their advice but yeah....major difference in the brain function when I got off the ice cream!

I have to go to court tomorrow so I cant be there looking all drugged out and not able to complete my sentences. ;)

It definately brought the yeasties out though....it was when I was on the ice cream that my antibodies were sky high. Once I was ice cream free the antibodies went down over 50%....even though they were still high it was a huge drop. So yeah....ice cream feeds yeast and impairs brain function....I'm pretty sure of it now. :lol:

Mia,

Sorry things are rough for you still. :(

I hope you can get set up with a new gastro who is more available for appts. since you have been dealing with this for awhile. Hopefully things will start progressing soon. I'm keeping you in my thoughts. :wub:

miamia Rookie

Rachel-

Thanks- I hope that getting a new gastro will help things move alittle more quickl in finding an answer.

I really hope you can finally get this test done I hate C I suffer from it as you know and it is the worst thing. Nothing can make me go. I feel for you!!!!!!!!

Miamia

miamia Rookie

has any one heard from kassandra?

Rachel--24 Collaborator
Rachel-

Thanks- I hope that getting a new gastro will help things move alittle more quickl in finding an answer.

I really hope you can finally get this test done I hate C I suffer from it as you know and it is the worst thing. Nothing can make me go. I feel for you!!!!!!!!

Miamia

Well I finally finished the test....thanks to a few handfuls of chocolate chips. :rolleyes:

The thing is I cant get the test picked up until Monday....since I'll be in court tomorrow. The instructions say the test needs to be at the lab within 5 days of collection. :huh:

Well the first collection (day one) was already 6 days ago. I have no idea if they mean 5 days since the first collection (which seems impossible) or within 5 days of completing the test. :unsure: By the time I get the test picked up (Monday) it'll already already be 4 days since completion. I'm so extremely frusterated about this....I do NOT want to have to start over!!! Boo-hoo. ::crying face::

I've been off my enzymes all this time and I just wanna be able to get back on track with everything.

I think the C might have more to do with stopping the enzymes than anything else. I'm sure the cheese cant be helping matters but it seems like the bloating/constipation became an issue again once I stopped taking my enzymes. :(

aprilh Apprentice

I easily get the C problem and cheese definately makes it worse!

I agree with Paula, some prunes might be helpful, or prune juice. There is an herbal laxatea. Hmmmm.....flax seed? Fruit smoothie, wheat grass shot?

confusedks Enthusiast
has any one heard from kassandra?

I'm here. Just kinda feel stuck in slow motion. I talked to the Dr yesterday and the bleeding got worse again, so she switched me to another med....it's used for uterine cancer. :( So I'm trying to not freak out totally. But it's given me horrible cramps, so I was in a lot of pain today.

AndreaB Contributor

Kassandra,

I'm sorry the bleeding has gotten worse today. Hope the new meds will help. Try not to worry.....I know easier said than done.

I'm thinking of you. :wub:

Rachel--24 Collaborator
I agree with Paula, some prunes might be helpful, or prune juice. There is an herbal laxatea. Hmmmm.....flax seed? Fruit smoothie, wheat grass shot?

Actually all of those things are extremely high in salicylates/phenols......so even if they produced a BM....the toxicity that would build up in my body would not be worth it. So unfortunately those things (especially herbs/fruits) are totally off limits for me.

Kassandra,

I'm sorry the bleeding has gotten worse today. Hope the new meds will help. Try not to worry.....I know easier said than done.

I'm thinking of you. :wub:

Ditto to all of this.

Try not to worry too much Kassandra. Take it one day at a time. This new development kind of threw you for a loop....but you've gotten through some tough things in the past and I have no doubt that you'll get through this one too. Hang in there. :wub:

mftnchn Explorer

Mia so sorry things are rough and sure hope you can find a new GI. Kassandra, I sure hope the change in med helps things improve.

Carla, and those of you treating babesia, I might need a reminder about what meds work. I should have asked Dr. E to check Melarone I think. Although I would be delighted to be on an only herbal approach for awhile, I worry that it might not be enough.

Rachel I sure hope the test works, these are such a pain to do.

Sherry

miamia Rookie

Kassandra-

I am so sorry to hear the bleeding has gotten worse . Hopefully the new meds will help and the cramping will subside.

I have an acupuncture appt. today. I have done acupuncture but not for a very long time. This guy is supposedly amazing but I am still skeptical becasue I feel so bad and while I believe in acupuncture I guess I just wonder if it will really be able to help me at this point. Still its worth a shot so today I have my first appointment.

Miamia

CarlaB Enthusiast
Carla, and those of you treating babesia, I might need a reminder about what meds work. I should have asked Dr. E to check Melarone I think. Although I would be delighted to be on an only herbal approach for awhile, I worry that it might not be enough.

Herbs - Artemisia Annua (Dr. B says it will not work alone, but needs meds) and Enula.

Meds. - Mepron, Malarone, Lariam, Quinine (not as common anymore).

Mepron needs to be taken with a Macrolide (zith/biaxin) to prevent resistance.

Mepron is the strongest .... I'm on it with zith, art, and enula.

dlp252 Apprentice

Mia, I'm interested in the accupuncture...I've been thinking of doing that for a couple of years now. I guess one of these days I should really check into it! Sorry you've been feeling bad!

I'm here. Just kinda feel stuck in slow motion. I talked to the Dr yesterday and the bleeding got worse again, so she switched me to another med....it's used for uterine cancer. :( So I'm trying to not freak out totally. But it's given me horrible cramps, so I was in a lot of pain today.

I'm so sorry Kassandra!

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):
    GliadinX
    NutHouse! Granola Co.




    Celiac.com Sponsors (A17-M):

    Food for Life



  • Recent Activity

    1. - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

    2. - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

    3. - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

    4. - Maura Gissen replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods

    5. - trents replied to Maura Gissen's topic in Food Intolerance & Leaky Gut
      5

      Autoimmune Reaction to SO many foods


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      128,978
    • Most Online (within 30 mins)
      7,748

    Sam777
    Newest Member
    Sam777
    Joined

  • Celiac.com Sponsor (A20):
    Smith & Truslow


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):
    GliadinX



  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):
    Skout Organic



  • Upcoming Events

  • Posts

    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
×
×
  • Create New...