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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
So it seems regulating body temp is a big part of it all, and crucial.

I have to say I think accupuncture was what helped me in this area, working with circulation and moving stagnate blood chi, but I believe you can arrive at the same result in different ways.

I also am so glad you brought up the lymph, I think lymph drainage is so important, and keeping it functioning and open to do its thing.

I forgot to mention I was put back on homeopathic Lymphomyostat (sp?) by HEEL, I think I saw that on your protocol Rachel.

I think it makes a difference, as well as the chi machine, mini tramp, and yoga for me as far as the lymph is concerned.

Julie,

I think the lymph system is really important. The liver and the lymph system are where most of the body's detoxification is taking place. If these arent functioning well....we end up feeling pretty bad. :(

My Dr.'s are always talking about how important it is to keep things moving....exercise, chi machine, rebounding...whatever it takes to improve circulation. This also brings the body temp up.

I do take a homeopathic lymph drainage. Its called Lymph -Tone 1 by Energetix. :)

The one you're taking is good...its one of the ones mentioned on my ND's report (Amy).


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tom Contributor
I think its pretty well accepted that pathogenic fungal infections, parasites and other gut infections can and *do* lead to a leaky gut situation.

Uhhh this is a general statement and I thought we were talking specifically about c.albicans' rhizoids.

I'm not sure that posting in something from whoknowswhere.com does any good. A source link gives any paste-post more

value.

. . . . I would assume that it has a cell wall no matter what form its in.

. . ..

Yes...the protein sequence was found in the cell wall of candida albicans. The protein sequence is found *only* in the yeast species with the ability to invade the intestinal wall. It is not found in other species of candida (there are over 150 species).

<sigh> yes . ... . .both HAVE cell walls. <sigh>

Yet something IS different betw the types of walls, since "The protein sequence is found *only* in the" walls of the fungal form.

If anyone has info that a non-leaky gut becomes leaky solely due to rhizoids, I'd love to read about it.

Not that it really matters - I'm just curious.

P.S. I think we all understand that we mean c.albicans when we say candida.

Rachel--24 Collaborator
Uhhh this is a general statement and I thought we were talking specifically about c.albicans' rhizoids.

I'm not sure that posting in something from whoknowswhere.com does any good. A source link gives any paste-post more

value.

If you would be interested in a link to where my quote came from there are definately better ways to ask. Maybe one of the other posters here could give you an example since they seem to be able to ask in a more appropriate manner which does not come across as being rude.

Also, I'm actually not trying to get into yet ANOTHER endless discussion with you about this. I'm not interested in making my post any more valuable and I'm certainly not interested in playing the word games...again.

Thats my post...if you dont agree...thats perfectly fine with me. Just please respond maturely and have respect for the posters here that do not like to constantly see this tension and conflict.

I am only interested in having intelligent discussions with posters who are respectful to one another.

This would be an example of an unecessary response which is only meant to provoke and create drama.

<sigh> yes . ... . .both HAVE cell walls. <sigh>

This was YOUR question...which I was responding to.

I think it was part of candida's cell walls that was the only thing that matched.

Does that mean it's just the fungal form? I think the usual bacteria form doesn't have near the 'wall' type of structure to it

I'm a little confused because it seems that you were suggesting that the bacteria form does not have a cell wall...or that the cell wall is somehow different??

As far as I know there is no bacteria form of candida....its a fungi. Also...a cell wall is a cell wall.

I dont know what you are refering to when you say that one form doesnt have "near the wall type structure to it"??

Yet something IS different betw the types of walls, since "The protein sequence is found *only* in the" walls of the fungal form.

I dont think this is specified in any of the articles I read. It says its found in the cell wall of the yeast....C. Albicans. It does not specify anywhere that the yeast has to be in a pathogenic form to have a cell wall. It has a cell wall regardless.

P.S. I think we all understand that we mean c.albicans when we say candida.

I'm sure not every reader who might read these posts is as educated on the subject as you are....so please keep that in mind when you post and when you respond to posts.

I post with the hope that someone might learn something....and if someone wasnt already aware that there are over 150 species of candida...now they will be. :)

and NO....candida albicans is not the only pathogenic species of Candida.....and not everyone with fungal overgrowth is dealing with this species....although it is the most common.

I'm not sure why it matters to you that I refer to the yeast in this particular study as C. Albicans?? :unsure:

I was simply making yet another failed attempt at responding to one of your posts. Hopefully the info is helpful to other readers.....because that is my main intent for posting. In case there is some confusion I'm here to post info. that might be helpful....I'm not here to play games with you.

dlp252 Apprentice

Yep, I've got candida guilliermondii... :rolleyes:

Don't have any idea what that is, and keep meaning to do searches on it, but keep forgetting.

Green12 Enthusiast

Rachel, I for one appreciate the info you posted and I find it helpful to me personally. Thank you :):)

Yep, I've got candida guilliermondii...

Don't have any idea what that is, and keep meaning to do searches on it, but keep forgetting.

:lol: Donna

That must be a part of your maladapted milieu

I know for me many different strains of candida come up.

CarlaB Enthusiast
Wait!!! No need to back :lol::lol:

Here's the link- Open Original Shared Link</a>

So I have my appt Tuesday with the new gal I will be going to, I'm excited and have been filling out the standard new paperwork when going to someone new, all that history is kind of a pain...

I decided not to take the oregano oil I bought. After hearing you say Donna that it burns all the way down and I think Jin was talking about how caustic (I think was the word) the oil is it would be a bad idea for me, I have so much scar tissue all the way down my esophagus and etc, I am affraid i would cause further damage.

Very interesting about the color ... red is good for anemia, which I always had. Purple is good for treating malaria (babesia is like malaria) ... tonight I'm wearing yellow, which is good for the liver and today I worked out, had a massage, and took a sauna ... I gravited toward this yellow shirt. No wonder you can be in the mood for a color.

The oregano oil is hot, kind of like it's spicy. I don't know that it's caustic, but I haven't researched that ... I was using it for GI problems (bacterial dysbiosis) and it seemed to help. It's probably good to research it more before taking it. I doesn't burn all the way down if you have enough water ... though I have had to have a "chaser."

AndreaB Contributor
A lot of people do not realize even Acitomenophen is dangerous.

Numerous deaths occur every year due to people damaging their liver by overdosing themselves. Normally, people did not read the labels of what their cold medication contains. Many already contain Acitomenophen. I always have read labels.

I meant to address you yesterday, but had no room in my first post. It was so long, I was not sure it would even let me post something that long! I have heard good things about eucalyptus oil for allergies as well. You can spritz it on your bed and pillows to keep dustmites at bay. Essential oils have many good qualities and uses! I know citrus is very energizing as well. So is mint.

The dentist I've started seeing doesn't like acetamenophen. He prefers Advil. I was taking tylenol after my tooth was pulled.

I didn't know eucalyptus oil could be used to help with dustmites on bedding. Interesting. Something I'll have to keep in mind. :)

There' a new TV series in the UK at the moment about all the toxins we bombard ourselves with. It's very interesting. They did a survey on breast milk and found the average b/f mum to have about 500 toxins in her milk :o It's making me realise I need to do more than just clean up my eating...

Sounds like an interesting show. I'm not surprised at all.

Part of your migraine, aside from magnesium, could be from caffeine withdrawal unless you have another source of it.

If I REALLY wanted to go badly on this she'd go. Heck I went on a submarine ride for her one time. :P

I'd say she owes you if you decide to go.

Hope the oregano oil starts going better for you......also hope the lawyer you were working on the document for realizes your co-worker would be behind the errors in the later part of the document.


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CarlaB Enthusiast

So, I lied in bed this morning till one when I finally broke down and took a Vicodin .... then I went to workout and did 30 minutes of cardio and the same of weightlifting ... man, should have discovered the Vicodin months ago! I'll have to see about some pain relievers this week at my phone consult!

Anyway, then I ate lunch at the gym (egg salad, lettuce, tomato, and onion), got a massage, came home and took a sauna ... put on my yellow shirt :), and went out for pizza (still wasn't good, gotta stop trying).

So, all morning, NO ONE was online! THEN, I leave, and TWO PAGES!!! :lol:<_< Can't catch up right now ...

hey, I'm doing alright, I'll give an update later when I get a chance... and of course, I have a few questions I'll probably ask as well...

my sister's procedure is coming up very soon... if you or whoever would like any updates, I can send a PM as I'd prefer to handle things that way...

Looking forward to the update ... I'd like a PM. :)

Carla, take good care of yourself and feel better.

Thank you. I did take care of myself, and to think I was supposed to paint the rental today!

I'm not as discouraged as I was, I am thinking I might just have to tweak a few things, and my intuition is telling me the angioedema might be infection induced and something that might be as easy as treating the infection.

I'll find out soon enough.

It sounds like you've made GREAT progress! I think you might be onto something with the infection idea.

HOLY COW....me either!! :blink:

Anyways.....I cant really say that I "embraced" the PINK....I think it was actually the other way around. :lol:

The whole thing is hysterical. I'd wear pink more often. :) I've always worn a lot of pink.

But, I always wear either black or white t-shirts or tank tops .... I stopped buying other colors. Sometimes I'll wear other things with them .... maybe I need more pink.

Livingroom: reacted

Kitchen: reacted

Bedroom: reacted

Bathroom: NO reaction

Computer area: NO reaction

Spare bedroom: NO reaction

Sounds like you need to move to the spare room!! Take the new carpet from those who offered!

Oh THANK YOU, lol...two neuro lymies trying to figure out how to go back isn't a pretty sight. :lol:

Not at all.

AndreaB Contributor
HI there.

I don't have any answers for you......just wanted to say hi. :)

So I have my appt Tuesday with the new gal I will be going to, I'm excited and have been filling out the standard new paperwork when going to someone new, all that history is kind of a pain...

I can't wait to hear about your appointment Julie. Thanks for posting the link again......I still haven't looked through that even though I bookmarked it the first time.

my sister's procedure is coming up very soon... if you or whoever would like any updates, I can send a PM as I'd prefer to handle things that way...

I'd like a pm please.

We'll be waiting for your update when you're able. :)

Green12 Enthusiast
The oregano oil is hot, kind of like it's spicy. I don't know that it's caustic, but I haven't researched that ... I was using it for GI problems (bacterial dysbiosis) and it seemed to help. It's probably good to research it more before taking it. I doesn't burn all the way down if you have enough water ... though I have had to have a "chaser."

Oh gosh, I hope it doesn't come across as I was implying that it is not a good idea for others to take it...I should have clarified. I just have issues with my throat, esophagus, and all the way down the tissue is really irritated and I have lots of scar tissue- sometimes just food burns depending on if I have a flare up, so for me I was thinking I should wait on taking the oregano oil straight and orally.

But I wholeheartedly support the use of oregano oil, I think it's great stuff. :D

Green12 Enthusiast
The BioSET update, lol:

Well as expected, I reacted to several rooms in my Condo

AndreaB Contributor
So my main major issue really is the chronic angioedema and still some food sensitivities.

I'm not as discouraged as I was, I am thinking I might just have to tweak a few things, and my intuition is telling me the angioedema might be infection induced and something that might be as easy as treating the infection.

I'll find out soon enough.

You have made great progress! :D

Anyways.....I cant really say that I "embraced" the PINK....I think it was actually the other way around. :lol:

Sounds like pink and you get along pretty well. :D

I really need some new clothes......maybe in a few more years. :P

Yep, I've got candida guilliermondii... :rolleyes:

Don't have any idea what that is, and keep meaning to do searches on it, but keep forgetting.

Say what?!?!

So, all morning, NO ONE was online! THEN, I leave, and TWO PAGES!!! :lol:<_< Can't catch up right now ...

Sounds like you need to move to the spare room!! Take the new carpet from those who offered!

I decided it would be safe to not be online for awhile since it's been quiet lately and I had 3+ pages to catch up on!

I agree Donna, your spare room sounds good, along with the new carpet (or labor for) from the churchmembers.

Keep us posted on the miasms. Those aren't very good are they?

confusedks Enthusiast

I read about all of the pink-ness and improvement so I went shopping today to buy something pink, but I didn't like anything I tried on!! <_< Maybe that is symbolic of where my health is...lol! B)

I have still had a lot of stomach issues. Not bloating, mainly D and EXCRUCIATING stomach pain right in between my ribs and above my belly button (don't know how else to explain). Everything is hurting my stomach and has been for the past 3 days...except for the first time I was able to eat something tonite without major symptoms. It was homemade gluten-free chicken noodle soup. Even something like tea and apple sauce hurts and within minutes I have D. It is so painful!

Carla,

I know you have had stomach problems...have you experienced anything like this? With pain, because this feels as bad as my pre-dx days!!! :huh: I am really worried I have an ulcer! I am going to see how I feel tomorrow and I may need to make a dr's appt! <sigh>

Any ideas would be appreciated! I think I may start a thread outside of Rachelville! I never leave here anymore! :D

Kassandra

AndreaB Contributor

I'm sorry you've been having it so rough Kassandra. :(

Maybe you have dysbiosis too. I think that's what Carla has/had.

I have a feeling you'll probably need to go to an LLMD to have a slew of tests run.

Have you heard anything about moving your appointment up for your back?

dlp252 Apprentice
That must be a part of your maladapted milieu

Unfortunately my milieu isn't the only thing that is maladapted! :lol:

Very interesting about the color ... red is good for anemia, which I always had. Purple is good for treating malaria (babesia is like malaria) ... tonight I'm wearing yellow, which is good for the liver and today I worked out, had a massage, and took a sauna ... I gravited toward this yellow shirt. No wonder you can be in the mood for a color.

Okay, so I supposedly have babesia as well, so that could be why I"ve taken a special interest in purple lately. I need more yellow I think, lol. What does it say about lime...sort have gone crazy with lime lately. :P

Hope the oregano oil starts going better for you......

But I wholeheartedly support the use of oregano oil, I think it's great stuff.

I may have to start taking oregano oil in capsules. Even with just one drop in a lot of water I can feel it all the way down my esophagus and it burns for a long while afterwards.

So, I lied in bed this morning till one when I finally broke down and took a Vicodin .... then I went to workout and did 30 minutes of cardio and the same of weightlifting ... man, should have discovered the Vicodin months ago! I'll have to see about some pain relievers this week at my phone consult!

...

Sounds like you need to move to the spare room!! Take the new carpet from those who offered!

:lol: on the vicodin.

Yeah, may just need to move into the spare room.

...... either that or the computer area or bathroom

I'm glad you are addressing these things, it will most likely help with your body's overall toxic burden load :)

:lol: !!! Well, considering there isn't enough room for me to lay down in my bathroom, I guess I'll stick with the spare bedroom or the computer area, lol. Course the computer area is only a few feet away from where I tested for the livingroom, so spare room it is.

Keep us posted on the miasms. Those aren't very good are they?

Nope...it's been a while since I've read up on them. I know we've discussed them here a few months ago...can't go back so I'll have to do some searches tomorrow at work (where my computer connection is faster and I don't feel the need to throw it (the computer) across the room).

Any ideas would be appreciated! I think I may start a thread outside of Rachelville! I never leave here anymore! :D

Gosh that pain sounds awful! I was going to suggest easily digestable foods, but hard to get easier than applesauce.

I rarely leave Rachelville myself anymore, lol.

tom Contributor
Even something like tea and apple sauce hurts and within minutes I have D. It is so painful!

Hi Kassandra,

Those would both do that to me before I first started treating candida.

Tea leaves ferment - nothing you can do about it. (Tho I'd wondered if living in Indosesia and picking them myself would've been ok) :)

And apple sauce was too sweet.

They'd make my gut feel like cement was hardening in there.

Your homemade gluten-free chicken noodle soup sounds yummy! :)

confusedks Enthusiast

Tom,

Wouldn't the soup have hurt my stomach because of the noodles if it was candida? I don't know...should read up more on candida. The only thing is it's not bloating, etc. It's extreme pain and if anything my stomach is flatter than it has ever been!

Kassandra

tom Contributor
Tom,

Wouldn't the soup have hurt my stomach because of the noodles if it was candida? I don't know...should read up more on candida. The only thing is it's not bloating, etc. It's extreme pain and if anything my stomach is flatter than it has ever been!

Kassandra

What kind of noodles? I would've been fine w/ Tinkyada or Tjoe's brown rice version.

You're right about lack of bloating pointing away from candida. Can't say I'm 100% sure that the bloating is must w/ candida.

Have you tried anything w/ vinegar lately?

Did the applesauce have ingreds besides apples?

AndreaB Contributor
Okay, so I supposedly have babesia as well, so that could be why I"ve taken a special interest in purple lately. I need more yellow I think, lol. What does it say about lime...sort have gone crazy with lime lately. :P

I may have to start taking oregano oil in capsules. Even with just one drop in a lot of water I can feel it all the way down my esophagus and it burns for a long while afterwards.

Yeah, may just need to move into the spare room.

Green is on the color therapy list. It's helpful for many things including mental stress which you were going through with that monster paper. It also helps with malaria and sleeplessness. You'll have to check out that color therapy page Julie linked for us.

Does the oil burn in your stomach or just on the way down?

I think the spare room would be a good idea for awhile.

Can you guys tell I'm getting lazy with my quote responses? :P

CarlaB Enthusiast

Andrea, the oil only has burnt on the way down much like hot sauce does.

Oh gosh, I hope it doesn't come across as I was implying that it is not a good idea for others to take it

Not at all! I just didn't want you to write it off without researching it more.

Carla,

I know you have had stomach problems...have you experienced anything like this? With pain, because this feels as bad as my pre-dx days!!! :huh: I am really worried I have an ulcer! I am going to see how I feel tomorrow and I may need to make a dr's appt! <sigh>

Honestly, the pain didn't go away until I started treating the Bartonella. Even when the dysbiosis was doing better, I still had crippling pain no matter what I ate. It wasn't from intolerances, it was just from having food in there. I was eating over 1000 calories per day in the form of liquid for a while with minimal solids and putting off the solids until about 3PM because afterward I'd feel bad the rest of the day.

I don't have the pain anymore, but I still have constant d from the dysbiosis/bart treatment.

I still suspect Lyme in you as underlying many of your health complaints. It wouldn't be just one more thing .... it would be the thing that needed to be treated to help with all your various symptoms .... if it were the problem, it would make treatment seem a bit less complicated than treating so many seemningly unrelated symptoms ... I'm not saying I think you have it ... I am saying I'm suspicious of it.

Sorry you're feeling so bad. Not that any of us deserve this, but it's sad to see someone so young suffering so much. You should be enjoying your high school years. Let's hope you get this under control so college is a better place for you. :)

mftnchn Explorer

Flash...(I haven't caught up with all of your posts over the last day...)

I think I may be on to something!!!!!!!!!!!!! Looking at my food and symptom diary, I have been stumped about why I recently had 5-6 days in a row with very normal stool, then back to the same old problems.

Today I realized that improvement started the 3rd day or so after I stopped taking Azithromycin for my week off (per doctor's directions), and started problems about the 3rd day after restarting the Azithromycin. Also dumped a lot of extra fluid on the 4th day or so.

I had not tried to check the ingredients because I knew that here in China it would be extremely hard to check (no rules, and if they are, the rules are often ignored). But decided I must look into this.

As of tomorrow I am dropping my "iffy" generic Chinese brand, and switching to the Pfizer brand of Zithromax. In the USA it is gluten free. I have tried to check here with the company and no luck getting to the right person as yet. Meanwhile I will switch brands and see what happens.

I am crossing my fingers and toes on this one! Maybe my problem all along has been glutening myself.

AndreaB Contributor
I am crossing my fingers and toes on this one! Maybe my problem all along has been glutening myself.

I hope this is the answer for you......or one of them anyway. :)

Can you get the other stuff while you are there or do you need to wait until winter when you come stateside?

covsooze Enthusiast

Kassandra, what sort of tea is it you're drinking? If it's ordinary tea, you should try stopping it - it's a major irritant for 'sore' stomachs. Try hot water and lemon. Carla suggested it to me, it really does work. i hope you start finding some answers really soon.

Rachel, thanks for all the info on candida and coeliac. I've not had time to fully digest it yet, lol, but will definitely discuss the links with my new dr when i eventually get to see him.

Susie x

dlp252 Apprentice

:o I slept last night! :o:lol:

By 7:00 I was falling asleep on the couch, so finally at 8:00 I decided to just go to bed. Now, this has happened before and what USUALLY happens is that whilst I can't keep my eyes open on the couch, once I get to bed I lay awake for hours. But last night, went to bed at 8:00 and fell right asleep, and didn't wake up until 1:45! Got up for a bathroom break, went back to bed and fell asleep again! Woke up around 3:30. I think I dozed off slightly again, but stupid work...I have to get up at 4:20, so didn't get to sleep much more. I think if I didn't have to work today, I might have slept again until 5:00 or so. Wow, lol.

Green is on the color therapy list. It's helpful for many things including mental stress which you were going through with that monster paper. It also helps with malaria and sleeplessness. You'll have to check out that color therapy page Julie linked for us.

Does the oil burn in your stomach or just on the way down?

I think the spare room would be a good idea for awhile.

I've never liked green much, but I've taken a special interest in lime green lately and actually have been buying some green clothing. My original intention was to paint my condo with every room a different color. I started painting the place in 1996, but then my dad died and I started getting sick and stuff, so never finished the painting, but my original plan was to paint my bathroom pink and my living room purple or green! My bedroom is blue which (according to that chart, and which I didn't know until this morning, lol) is supposed to be good for insomnia. My spare room is painted yellow. So, as Carla said yesterday yellow is good for the liver, so maybe sleeping in the spare room for a while will be helpful, lol. Course, I have to move EVERYTHING that is on that bed somewhere first, lol.

The oil burns in my stomach too. I think that's why I felt nauseated afterwards. With only the one drop, I don't feel it in the stomach anymore, but definitely can feel it's on the verge of making me nauseated. This sounds like a bad thing, but I'm not entirely sure it is. I'm trying to give it a chance because I think it may be really good at what it's supposed to do and that perhaps these side effects are really just the oil working. I haven't decided on that yet though.

I think I may be on to something!!!!!!!!!!!!!

Wow, good diarying, lol! I'm trying to be better about journaling in more detail so that when I go back I can tell if certain combinations or amounts made any differences. Hope you get your answer!

CarlaB Enthusiast

Donna, YAY on the sleep!

Sherry, don't forget that the abx themselves can cause bowel problems. Are you taking a good probiotic? I hope it's as simple as changing brands. Things haven't been, um, firm, for me since starting the Levaquin a month ago. I'm thinking it's most likely part of the bart herx though ... most of my GI issues have gone away completely with the bart treatment.

I'm actually in a lot of pain lately. I have been taking the Vicodin .... it helps and makes me less fatigued, which is strange because Vicodin usually knocks me on my can! That's why I have so much of it left over. That gives me an idea of how much pain it is taking care of ... I think I'm just used to blocking it out best I can.

Adam thinks it's pain I've had all along but am just noticing it more now that I'm getting better. I don't know ... I know I felt good this summer for two months. It also could be stirring up the bart .... I'll ask at my phone consult on Thursday.

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      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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