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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast
Carla,

When will we hear from Kassandra?? We are a very impatient bunch here. :ph34r:

I wanna know what happened!

:lol: :lol: I don't know! I passed on every word she said in her texts!!! :lol: I promise I did!

I had pizza tonight. :P Gorgonzola, bacon and garlic butter on one, four cheeses, garlic butter, and mushrooms on the other ... you'll have to come visit when you get the go-ahead to eat everything. :D

Laura sent me an article on VSL#3 .... I'll have to post it. I have to take it at least every other day, and this article might explain why ... However, I was gluten-free and still had to take it at least every other day, so maybe it doesn't.

Biochim Biophys Acta. 2006 Jan;1762(1):80-93. Epub 2005 Oct 21. Links

VSL#3 probiotic preparation has the capacity to hydrolyze gliadin polypeptides responsible for Celiac Sprue.

De Angelis M, Rizzello CG, Fasano A, Clemente MG , De Simone C , Silano M , De Vincenzi M , Losito I, Gobbetti M.

Department of Plant Protection and Applied Microbiology, University of Bari, 70126 Bari, Italy.

The native structure and distribution of gliadin epitopes responsible for Celiac Sprue (CS) may be influenced by cereal food processing. This work was aimed at showing the capacity of probiotic VSL#3 to decrease the toxicity of wheat flour during long-time fermentation. VSL#3 (10(9) cfu/ml) hydrolyzed completely the alpha2-gliadin-derived epitopes 62-75 and 33-mer (750 ppm). Two-dimensional electrophoresis, immunological (R5 antibody) and mass spectrometry analyses showed an almost complete degradation of gliadins during long-time fermentation of wheat flour by VSL#3. Gliadins non-hydrolyzed during fermentation by VSL#3 were subjected to peptic-tryptic (PT) digestion and analyzed by CapLC-ESI-Q-ToF-MS (Capillary Liquid Chromatography-Electrospray Ionization-Quadrupole-Time of Flight-Mass Spectrometry). Search for several epitopes showed the only presence of alpha2-gliadin-fragment 62-75 at a very low concentration (sub-ppm range). Compared to IEC-6 cells exposed to intact gliadins extracted from the chemically acidified dough (control), VSL#3 pre-digested gliadins caused a less pronounced reorganization of the intracellular F-actin which was mirrored by an attenuated effect on intestinal mucosa permeability. The release of zonulin from intestinal epithelial cells treated with gliadins was considerably lower when digested with VSL#3. Agglutination test on K 562 (S) cells showed that the PT-digest of wheat flour treated with VSL#3 increased the Minimal Agglutinating Activity of ca. 100 times. Wheat proteins were extracted from doughs and subjected to PT digestion. Compared to PT-digest from chemically acidified dough, celiac jejunal biopsies exposed to the PT-digest from the dough fermented by VSL#3 did not show an increase of the infiltration of CD3(+) intraepithelial lymphocytes. Proteolytic activity by probiotic VSL#3 may have an importance during food processing to produce pre-digested and tolerated gliadins for increasing the palatability of gluten-free products.


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AndreaB Contributor

8 hours is a long drive. Her mom will be exhausted I'm sure!

Carla,

I speed read that........in one eye and no further. :P English please. :lol:

Sounds like the VSL lowers the reaction to the gluten though.

confusedks Enthusiast

Hello everyone!!!!! :D

I didn't really catch up, but I did see all your sweet comments!!!! :PB) The appt. went REALLY well...I will definitely send out an email soon...it may be tonite, but maybe tomorrow.

The drive was about 6 hours...not too bad. I am REALLY tired because the terrible nights sleep I got on Wed. night...but I slept pretty well last night, but I had to wake up too early.

My mom was great with everything....Dr. H was pretty surprised at my [un]lovely symptoms, and he definitely was very concerned.

I haven't even checked my emails yet, so I will do that soon and make sure I have everyone's email address.

Kassandra

mftnchn Explorer

We can't wait to hear, and glad your mom was great. We are all so hoping you'll see some positive improvements soon.

mftnchn Explorer
Sherry, I forgot to comment on this. I recently had asked my acupuncturist if she or her teacher (a very old wise Chinese man) used Chinese medicine to treat lyme disease. She said yes, and off the top of her head she told me they approach it and treat it as bacteria, but needed to ask her teacher more about it, and of course this is for here in Colorado.

I found a couple of interesting links for you (if you didn't have this info already):

Open Original Shared Link

Open Original Shared Link

And apparently there is a book out on the subject:

<a href="Open Original Shared Link Advertisement/Lyme-Disease-Modern-Chinese-Medicine/dp/0967721318" target="external ugc nofollow">Lyme Disease and Modern Chinese Medicine</a>

Thank you Julie. I know there is Dr. Zhang out there too with his herbal approach. My LLMD said he had a few people take those for awhile without much help, and it is so expensive.

The spirochete treatment part was useful. Part of my problem is communicating to them...because they know nothing about lyme.

I'd have to wait until spring. You have to take it for quite awhile and it has to be adjusted regularly, so it wouldn't be good to start now anyway.

AndreaB Contributor
My mom was great with everything....Dr. H was pretty surprised at my [un]lovely symptoms, and he definitely was very concerned.

I'm glad your mom was great. That's got to be a relief.

We'll be anxiously awaiting your email, whenever you have the time and energy to send it.

I won't be on til tomorrow afternoon. We are heading up to our old church to wish our pastor farewell. He's accepted another post.

confusedks Enthusiast

Cherry and Andrea,

Thank you!

Everyone,

I just send the email...the subject is "addresses for Kassandra"...sorry I didn't rename it! Also, it may be from Carla's email address...not sure.

Kassandra


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confusedks Enthusiast

Also, Ami you sent me a PM, but I don't think you put your email in there...did you get it? If not, PM me your email address and I'll send it!

Birdy,

Would you like to get the email? I don't know if anyone has your email? Let me know.

Kassandra

AndreaB Contributor
I just send the email...the subject is "addresses for Kassandra"...sorry I didn't rename it!

I got it. I'll respond tomorrow sometime. I'm heading to bed. :)

mftnchn Explorer

Kassandra,

This appointment sounds awesome!!! Finally! A doctor that sees the whole picture and that sounds trustworthy. Yay!!!!!!!!!!!

Also, I like how your mom seems to be on board. I have a feeling that the doctor and PA spending 3 hours and taking all of this seriously went a LONG way!

Keep us updated! I have a feeling that further testing will make this an even clearer picture. Can Dr. H's office give you a prescription for more materials to maintain the PICC line?

I spend $9.32 for 6 pills out here, how does that compare with what you are paying? (Maybe I need to be sure to bring it home with me if I can stay on this....)

Sherry

mftnchn Explorer

I see that Zithromax is sometimes associated with liver toxicity....so if dropping the antifungal and flagyl don't help....probably that will go next. I think Zith is better than others.

Kassandra, I think just proceeding cautiously--with the doctor staying up to date on your responses. You need this treatment it sounds like.

It has taken a long time for me to develop this problem, and I am guessing one issue might be that I changed brands of milk thistle...maybe I got one that isn't that good. Also I had to drop lipoic acid last year due to insomnia from it.

dlp252 Apprentice

Well, I didn't take my evening supplements yesterday and none of that bad gassy stuff. I did take the Humaworm and my neurosciences stuff though. Today, I'll try taking only the magnesium to see if it's that.

Great idea! You could stay with us (if you can live without TV) and I'd chauffer you too. :) If you came up here you could get a baseline to work with and continue treatments down there too. Dr. E is also very good with ART. She's an instructor and a person that Scott calls when he needs help with something.

You're on, lol!!!

Heres Amy's email.

doctoramy@comcast.net

Oooh, thanks, lol!

I did 3cc's of DMPS without any complications/symptoms....I feel really good right now. :D

I'm doing the orange juggy thing for the next 6 hours. :P

Ah, our old friend Mr. Orange Jug...well YOUR old friend, lol, I haven't had the pleasure yet. Yay on the 3cc's of DMPS!!! Very cool!

Awesome!! You are just plugging right along with this, like the little Rachel engine that could

:lol:

I finally get to see Amy tomorrow...and my brain seems to be functioning...so all is good right now!!

I'm gonna bring my voice recorder....right now I'm gonna write down my questions. :)

Can't wait to hear about it!

I speed read that........in one eye and no further. English please.

Me too, lol.

I just send the email...the subject is "addresses for Kassandra"...sorry I didn't rename it! Also, it may be from Carla's email address...not sure.

Got it and responded...appointment sounds GREAT!!!!

CarlaB Enthusiast
I speed read that........in one eye and no further. :P English please. :lol:

Sounds like the VSL lowers the reaction to the gluten though.

Very basically, it says that VSL#3 can digest the gluten protein.

So, my question is, can non-celiac gluten intolerance be caused by a lack of the right bacteria to digest the gluten protein? If VSL#3 is shown to digest it, and VSL#3 is just bacteria, it follows that it's a lack of bacterial balance in the intestines .... which makes perfect sense in my case since I used to be so sensitive to gluten and now have no problems with it at all.

Kassandra, I sent you an email, but just wanted to say again that I'm so happy it's all coming together for you and that your mom is now on board. You'll look back at your first appt. in a few months and wonder how you even got there .... that's how I feel ... I wonder how Adam got me all the way to NY! I remember being completely dependent on him for everything .... now I go up there without him. :)

Nyxie63 Apprentice

Geeze! So much to catch up on! You've been busy! :lol: I'm sure I missed stuff (information overload) so please don't take it personally if something's not mentioned. :)

Kassandra,

So glad you're finally getting some answers. And with a good doc too! YAY! :) Have you been checked for adrenal fatigue? It could be one cause for the insomnia, besides the Lyme or as a result of it. Folks with chronic illness often develop adrenal fatigue.

Donna,

Could be the magnesium. It is a laxitive after all.

Andrea,

Oooh! Pumpkin custard! And those pizzas sound faboo!

Sherry,

Wow! 7 years is a long time not to have improvement. Sorry you're going through all this. Btw, I have cook envy. :P Those noodles sound wonderful. Mmmmm... noooodles. *drool* When was the last time you had your pancreatic enzymes checked? If your amylase is low, that could interefere with carb digestion.

Rachel,

Glad you're feeling so much better! Think it was maybe the sugar in the chocolate stirring up the candida that caused your migraine? And thanks for the info. Interesting, as always.

I definitely think you're right about the vaccines. I'd had tons of vaccines (probably 30+) by the time I was 12. We travelled overseas every year or so and had to have a full battery of shots going each way, in addition to the standard childhood vaccines that were done at the time. I was socially withdrawn and prone to temper tantrums. Still socially withdrawn, but at least the temper tantrums have passed. The family joke is that I didn't outgrow my terrible twos until I turned 26. I had a great deal of difficulty understanding what was going on around me in addition to lacking an ability to express myself. I think that was the main cause of the temper tantrums - it was a combination of stimulation overload and frustration. I didn't do the rocking thing or headbanging tho. I'd "veg". My mind would just go blank and I'd stare out into space. I found it relaxing, but my family was concerned about it. Not enough to see a dr, mind you - just enough to give me a hard time everytime they caught me at it. It wasn't "normal" and therefore unacceptable (the appearance of normality, happiness, and lack of dissention was very important. Can you tell I'm just a little bitter?). It was the same way with the OCD. I've had trichotillmania (hair picking) since I was 12. At one point, I had no eyebrows, few eyelashes, and a bald spot on the top of my head. Ok, now I sound completely loopy. Gonna stop now.

Tantwan,

Hi and Welcome!

Julie,

Yeep! That sounds scary! And you get this about once a month?! :o Have you talked to your dr about trying some bioidentical progesterone cream to keep your levels up?

Jin,

If you like, and can tolerate, coconut you might try coconut oil instead of margerine. Its not bad on toast, although I don't use it a whole lot in cooking because it makes everything taste like coconut. Not bad for stir fries or sweet potatoes, but I wouldn't make eggs with it. Bleah!

For natural hair colors, check out this site www.naturalhairdye.com. This is the line that my health food store carries. While there's still a lot of stuff in it, it seems a little better than most other commercial products. Have you considered henna? Maybe check out www.hennaforhair.com. Fun stuff there.

LOL! Yeah, I'm twisted, but only slightly. ;) Hubby and I are both goth and pagan. Guess a different perspective comes with the territory. *grin* I actually liked being pale. Used to joke that my foundation color was "Fishbelly White". The last year or so, my incidental summer tan hasn't been fading over the winter as much as usual, so I seem to have a perpetualy sallow complexion these days. I don't like it.

Ami,

Glad to hear things are better. :)

-------------

And in other news.... Still haven't heard back from the GI's office. Feh! Tired of this nonsense. The pain finally stopped Thursday night, although I still felt pressure in my abdomen in the same spot yesterday and this morning. I upped my digestive enzymes to 1000mg with each meal and snack and it seems to be helping. Have also been drinking hot lemon water with each meal and that's probably helping too.

Saw the new holistic doc yesterday. A rather rushed, but productive appointment... I think. She ordered more testing, including my DHEAs and Free Testosterone this time. Finally getting my iron and D checked again, since it hasn't been tested since July. And she approved raising my iodine to 100mg a day in order to try to fight the possible cancer in my thyroid. Yay!

She also ordered a stool analysis through Doctor's Data Labs. It checks for malabsorbtion of various things, as well as parasites. We already know I have dysbiosis. She wants to see just exactly what's in there and what its doing. She kind of breezed by allergy testing, but at least it was mentioned. She's the first one to even go there. She thinks my abdominal pain and associated problems are more indicative of food poisoning/bacteria, rather than an organ problem. Hope she's right, but it still doesn't explain some of the things on my blood tests or the fact that the pain was localized, with only occasional radiation to other areas. If you're interested in checking the test out, its here www.doctorsdata.com/test_info.asp?id=25. And insurance will cover it!

I'm in overload right now. Will try to catch up more later. :)

CarlaB Enthusiast

I had the Doctor's Data testing done .... but I think that was the urine test .... seems like someone else did the stool test (Genova?) ... anyway, sounds like you're on the right track.

I'm sure pretty much everyone with Lyme has adrenal fatigue on some level .... my adrenals test okay though.

Green12 Enthusiast
The spirochete treatment part was useful. Part of my problem is communicating to them...because they know nothing about lyme.

I thought this was interesting from the link I posted:

"There is no reference to Lyme disease in the Chinese literature and there may be none for some time, as most of China's forests have been eliminated. There are other spirochetal infections that have been addressed by Chinese physicians and by Chinese researchers conducting clinical trials or laboratory tests of infection-inhibiting properties. The relevant organism most often studied in China is Leptospira, which causes the disease called leptospirosis."

I'm also dealing with very elevated liver enzymes. I'm not on any meds however, but most (if not all) do contribute to liver toxicity. My practitioner has me on high doses of omegas (I am taking these in the form of cod liver oil) and vitamin D. Not only does this assist with the liver but it also strengthens both sides of the immune system, TH1 and TH2.

Also Andrea had reminded me about B12, I did a little research and B12 actually regenerates liver cells.

AND there is Schizandra (sp?), the Chinese herb complex that provides liver support, I am not sure what individual herbs it breaks down to.

Kass, thanks for the email. I'm glad you had a really good appt and that you and your mom, AND your Dr are all on the same page!!! FINALLY!!!!

So, my question is, can non-celiac gluten intolerance be caused by a lack of the right bacteria to digest the gluten protein? If VSL#3 is shown to digest it, and VSL#3 is just bacteria, it follows that it's a lack of bacterial balance in the intestines .... which makes perfect sense in my case since I used to be so sensitive to gluten and now have no problems with it at all.

Makes sense to me, actually I find this very fascinating......

Julie,

Yeep! That sounds scary! And you get this about once a month?! Have you talked to your dr about trying some bioidentical progesterone cream to keep your levels up?

Hi Nyxie, just to clarify it isn't a hormonal imbalance. My breakout pattern correlates somehow with the natural normal rise and fall of hormone levels that we all have in our cycles.

Sorry you continue to struggle with your issues. Sounds like the holistic Dr. is covering a lot of bases.

Great Smokies is one of the labs a couple of us had stool tests through.

Donna, is the D any better?

Also, I was going to ask you if that itching/rashing has continued?? I think you mentioned it last week sometime that after starting up the Humaworm that returned for you?

Ok, funny question of the day........How many are taking HCL, or have had it suggested as a supplement to take in their protocols??

Rachel--24 Collaborator
So, my question is, can non-celiac gluten intolerance be caused by a lack of the right bacteria to digest the gluten protein? If VSL#3 is shown to digest it, and VSL#3 is just bacteria, it follows that it's a lack of bacterial balance in the intestines .... which makes perfect sense in my case since I used to be so sensitive to gluten and now have no problems with it at all.

To my knowledge gluten is broken down by a specific enzyme...the DPPIV enzyme. This enzyme is necessary for the digestion of both gluten and casein.

All enzymes can be blocked or inactivated by mercury or other heavy metals...the DPPIV enzyme is particularly sensitive to mercury. Many autistic kids are unable to digest gluten and casein for that reason. If the enzyme is not functioning it will result in a gluten intolerance.

I think taking a probiotic like VSL#3 would help restore balance...which would also help to heal the gut. I think as you heal and are getting rid of pathogenic organisms and replacing them with good flora...you naturally are in the healing process. If your gut is healing you will react to less foods.

Personally, I think it depends on what is causing the non celiac gluten intolerance in the first place. If its leaky gut due to inflammation caused by pathogenic organisms in the gut....then yes...correcting that situation in the gut would allow for the gut to heal.

If the gut is leaky...there are pathogenic organisms as well as heavy metals AND the DPPIV enzyme is blocked....then no...I do not think a probiotic will correct that situation. The DPPIV *has* to be functioning in order to digest gluten.

Rachel--24 Collaborator
AND there is Schizandra (sp?), the Chinese herb complex that provides liver support, I am not sure what individual herbs it breaks down to.

One of my doctors had me on schizandra for adrenal support. I reacted to it...(cuz I react to almost all herbals :rolleyes: ). He ended up making me a homeopathic schizandra instead. I didnt know it was for liver support as well.

The herbs in my shizandra are..

schisandra fruit

chinese yam rhizome

rehmannia root

chinese dodder seed

asian plantain seed

palm-leaf rasberry fruit

lycium fruit extract

asiatic dogwood berry extract

Rachel--24 Collaborator

Kassandra,

I was really excited to read your email! :)

Glad that you are finally gonna be moving forward. I've done or am currently doing most of the treatments you brought up in the email so I'm familiar with alot of it. :)

I think you're the only one here besides me who has had the IFA. Mine was positive also (1:160) but Dr. H. at Igenex had told me it wasnt 100% specific for lyme....and that other infections could cause the high titer. Did your Dr. H. tell you the same?

dlp252 Apprentice
Could be the magnesium. It is a laxitive after all.

Yeah, I've thought this before, lol, but every time I cut it out, the D continues, and the bad gassy stuff was just in the last week and a half or so. I'm sure it doesn't help, but I'm pretty sure it's worse because of something in the Humaworm. I'm going to be experimenting with it this week, lol.

I've had a couple of doctor's data tests...I've had about 3-4 stool tests done, I'm not sure ALL of them were Doctor's Data, but I know two of them were.

Donna, is the D any better?

Also, I was going to ask you if that itching/rashing has continued?? I think you mentioned it last week sometime that after starting up the Humaworm that returned for you?

D is MUCH better today...in fact I haven't gone at all yet, lol. It really felt like I "expelled" whatever it was that was causing the distress on my last trip yesterday. I hope so, lol.

The itching has continued. It had been gone for quite a while and has returned since being on the Humaworm. The "rash" thing on my elbow is finally going away, and so far I haven't noticed any new rashes...just redness where I scratch. My leg looks like a roadmap, lol.

CarlaB Enthusiast
To my knowledge gluten is broken down by a specific enzyme...the DPPIV enzyme. This enzyme is necessary for the digestion of both gluten and casein.

All enzymes can be blocked or inactivated by mercury or other heavy metals...the DPPIV enzyme is particularly sensitive to mercury. Many autistic kids are unable to digest gluten and casein for that reason. If the enzyme is not functioning it will result in a gluten intolerance.

I think taking a probiotic like VSL#3 would help restore balance...which would also help to heal the gut. I think as you heal and are getting rid of pathogenic organisms and replacing them with good flora...you naturally are in the healing process. If your gut is healing you will react to less foods.

Personally, I think it depends on what is causing the non celiac gluten intolerance in the first place. If its leaky gut due to inflammation caused by pathogenic organisms in the gut....then yes...correcting that situation in the gut would allow for the gut to heal.

If the gut is leaky...there are pathogenic organisms as well as heavy metals AND the DPPIV enzyme is blocked....then no...I do not think a probiotic will correct that situation. The DPPIV *has* to be functioning in order to digest gluten.

I don't doubt any of this, but my question came from the study .... if VSL#3 has been shown to break down gluten and it's being further researched to see if it can break down the gluten enough so that the quality of gluten-free products can be improved, I'm just wondering if it's contributed or has the possibility to contribute to healing gluten intolerance in people who take it .... especially since my D comes back as soon as I stop taking it ... but then again, I had this same issue when I was gluten-free .... so I wonder if it also helps digest other things. Just thinking out loud ... sort of, I guess thinking in writing, LOL.

confusedks Enthusiast

Rachel,

They didn't say anything about the IFA being false positive... or maybe they did, I can't really remember. :rolleyes:

Carla,

They are going to treat me for tapeworms or parasites with I think Humaworm. Right now though I am not going to take anything because I don't want to alter the tests he has me taking. I would be concerned that if I take an anti yeast/fungal I would screw up the yeast tests and I don't want to do that.

I told my mom that I do want to get Theralac and she does agree that it's REALLY important to take a strong probiotic, so she may be willing to get it for me.

I already wonder how I got there...I felt pretty terrible yesterday and in the ride up there...it was no fun at all!! I am SO glad he comes to Malibu once a month...lol!

Nyxie,

I don't know if he is going to test me for Adrenal Imbalances...are thyroid tests part of that? If they are those are fine.

Sherry,

I'm sure Dr. H's office will write me a script for PICC line stuff. We just got a month's supply from an Infusion Pharmacy, so we will be good for a little while, but I'm sure they wouldn't mind at all!

That is pretty cheap...it was going to be $10.50 PER pill!!!! Yikes!!!

Donna,

I do have Excel, so you can send me everyone's results if you wouldn't mind. :rolleyes:

Everyone,

I forgot to say in my email that I asked Dr. H about Humaworm and he said he has a conference type thing about it on Monday and he will let me know when we talk next about what his thoughts are. I was shocked he even knew about it...I was very impressed! :)

My mom started taking the Olive Leaf Extract, and she already feels it. She only took one last night...he has me taking 2, 2x a day!! LOL! She will take Humaworm if Dr. H decides I should take it...even if he doesn't want me to take it now, she will still order it. She is coming around definitely...and I think any parent would after a 3 hours hour appt.! LOL!

Kassandra

Green12 Enthusiast
One of my doctors had me on schizandra for adrenal support. I reacted to it...(cuz I react to almost all herbals :rolleyes: ). He ended up making me a homeopathic schizandra instead. I didnt know it was for liver support as well.

The herbs in my shizandra are..

schisandra fruit

chinese yam rhizome

rehmannia root

chinese dodder seed

asian plantain seed

palm-leaf rasberry fruit

lycium fruit extract

asiatic dogwood berry extract

Ok so I found my Schisandra compound, out of curiosity to compare, these are the traditional Chinese herbs in mine:

Fructus Schisandrae

Radix Bupluri

Radix Salviae

Radix Paeoniae

Radix Glycyrrhizae

Radix Angelicae

I don't know what these translate to, but this compound was given to me for liver support.

I don't doubt any of this, but my question came from the study .... if VSL#3 has been shown to break down gluten and it's being further researched to see if it can break down the gluten enough so that the quality of gluten-free products can be improved, I'm just wondering if it's contributed or has the possibility to contribute to healing gluten intolerance in people who take it .... especially since my D comes back as soon as I stop taking it ... but then again, I had this same issue when I was gluten-free .... so I wonder if it also helps digest other things. Just thinking out loud ... sort of, I guess thinking in writing, LOL.

I get what you are saying Carla and I think there must be something to that for you. Interesting that your body can't handle gluten before VSL#3, or off of it.

Donna, I'm glad the D is gone.

I am wondering then if the rashes on your legs have been from parasites, interesting that it started up again on the Humaworm.

CarlaB Enthusiast
I get what you are saying Carla and I think there must be something to that for you. Interesting that your body can't handle gluten before VSL#3, or off of it.

Right, but even if I am gluten-free, I still get the d when I'm off the VSL#3, so there must be more to it in my case ... it can't just be the gluten/VSL#3 .... for me there's more.

I was thinking about the study on gluten/VSL#3 .... It seems that the good bacteria in our system is essential to digestion if they are able to use this product to "pre-digest" gluten.

dlp252 Apprentice

OMGOSH!!!! They just called me to see if I wanted to see Dr. Amy while she's here. Apparently she had a cancellation and they called me. Guess what?! I had to TURN IT DOWN. Can you believe it?!? The opening was for Tuesday at 3:00 and unfortunately I have a rehearsal at 7:15 and since our performance is the next day, I can't really miss it. I'd be too worried about making the rehearsal to relax, so I told her to give it to someone else. I CAN NOT FREAKING BELIEVE IT, lol. :angry:

I do have Excel, so you can send me everyone's results if you wouldn't mind. :rolleyes:

Just sent it.

I am wondering then if the rashes on your legs have been from parasites, interesting that it started up again on the Humaworm.

Yeah, I'm sort of thinking it's connected. My diet and supplements are pretty much the same as they have been for several months. My stomach feels flatter, lol. Die bugs, die! :lol:

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    • Wends
      Hi RMJ. I read your post. Sounds like you need a second opinion? Have you been advised by Dietitian or referred to one? There are protocols for treating patients that have ongoing celiac disease antibodies / histology. Particularly as you have nausea and pain. You probably already know about the gluten contamination elimination diet. It may be that you are super sensitive to even the allowed 20parts per million gluten in certified gluten free flours and products? An elimination of all grains for a time may be necessary? Especially oats if you currently include them? It’s worth noting that a minority of Celiacs have oat intolerance and T cell response similar to gluten (particularly carriers of high risk HLADQ2.5), and ongoing celiac damage to the gut can occur with oats. Even certified gluten free oats. If you are already super strict and careful about cross contamination, do you eat cheese or have any cow’s milk in your gluten free diet? It’s often overlooked, even by specialists and Celiac dietitians. But there are case study reports in children. There’s a study in adults showing mucosal reaction to casein in Celiacs, and quoted 50% of Celiacs react to casein similar to gliadin because of molecular mimicry. Then there was this letter to the editor following up a case that states, ”We conclude that given this novel information, pediatric, and possibly adult, celiac disease patients with suspected “refractory” celiac disease and no detectable gluten exposures, should be trialed on a combined CMP-GFD with close monitoring for disease activity resolution prior to consideration of more restrictive diets…” (Jericho H, Capone K, Verma R. Elimination of Cow’s Milk Protein and Gluten from the Diet Induces Gut Healing in “Refractory” Pediatric Celiac Patients. Ann Pediatr. 2021; 4(2): 1082.) CMP-GFD: cow’s milk protein-gluten free diet. Hope you figure it out.  
    • trents
      Welcome to the forum, @BlakeAlex! Is this the GI Reset product you are using?: https://inwellbio.com/wp-content/uploads/2023/08/GI-Reset_Info-Sheet.pdf There is a lot of weird stuff in that you could be reacting to. Personally, I would discontinue it as I doubt it's really doing you any good anyway. Getting to the point where you are truly eating gluten free consistently usually involves a significant learning curve as gluten is hidden in the food supply in many ways by manufacturers. For instance, would you ever expect to find it in soy sauce or Campbell's tomato soup? But it's there and a main ingredient. Getting rid of macro sources of gluten is relatively easy. Just cut out bread, cake and pasta. But avoiding the hidden sources and the cross contamination sources is much harder. I am including this article that might be of help to you as a new celiac in getting off to a good start:    Long-term undiagnosed celiac disease inevitable leads to nutritional deficiencies because of the damage done to the lining of the small bowel where almost all of the nutrition in our food normally is absorbed. We routinely recommend that newly diagnosed celiacs invest in some quality gluten-free vitamin and mineral supplements. And I'm talking about more than a multivitamin. We recommend a high potency B-complex, 5-10,000 IU of D3 daily, Magnesium glycinate, and zinc. I suspect your mouth and throat ulcers are nutritional deficiency related. Costco is a good place to get good quality gluten-free vitamin and mineral supplement products at a reasonable price. Are you on medications? May we ask your relative age?  
    • BlakeAlex
      Hello, I was recently diagnose with Celiac Disease and without realizing, I had every symptom on the list. Now I am moving as fast as I can to a total recovery. I thought I was doing well but I notice my ulcers on my tongue and throat and cough are starting to come back again.  Has anyone experience these symptoms? Also, I am incorporating GI Reset powder for a jump start to recovery.  Thanks in advance, Blake     
    • trents
      No. There is no damage done to the gut lining with NCGS.
    • MagsM
      Hi Trents, Thanks for the feedback. Yes, I do have concerns about NCGS. Would this show up if I did the endoscopy testing?
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