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Omg...i Might Be On To Something


Rachel--24

Recommended Posts

jerseyangel Proficient

Celia--Thanks for that link! It was very interesting--great news about almonds and even potatoes! :D


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Rachel--24 Collaborator
Rachel - about the cucumbers...I was buying organic from Whole Foods but when I would wash them I could feel a sticky almost gel like substance on the skins that wouldn't come off...I always peel mine, but am sure that some of it gets on the peeler and back on the cucumber....then I just happened to see Rachel Ray on the Food Network who always buys the "english" cucumbers--the ones in the plastic wrap--because she says they don't have that sticky gel stuff on them. I was thinking it was my imagination, but no, guess not. So I've been buying the really long skinny ones in the plastic wrap and haven't noticed any stickiness on the skins when I wash them...bonus, they have very few seeds.

Donna,

Good to know about the cucumber skins. I actually havent eaten the skin in over a year...I peel everything....I get a little crazy with my peeler. :D

I got some home grown carrots I'm munching on right now. My mom brought me some stuff from her father in law's garden. :)

Rachel-

which Digestive enzymes do you take? I am sensitive to everything and seem to be ok with mine they are one of the only things I am still taking. I am curious as to what the meds they are gonna give you for your gut are. You'll have to let me know when you find out the name. I've been off corn and I think its a good thing but I used to eat these plan tortillas the only ingredient was sprouted corn nothing else. I was thinking if there was nothing else in them at all could I try them again? I guess Iw as just curious on other peoples opinions.

Miamia

You could try the tortillas again and see if you react. If you're ok with them thats one extra thing you can eat...just dont overdo it like I always do. :)

The enzymes are Digest Gold from Enzymedica. They are pretty expensive ($50 for 90 pills) but I got bad reactions to all the other ones I've taken. I'll let you know about the drug after I call them today and get some info.

Thanks. I did kinda like being a mango tree, but I thought I'd show everyone I'm actually a real person. LOL

I liked the mango tree too but the real you is better. :)

Funny thing is for some reason I always thought it was an avocado on the tree. :ph34r:

Judy.

DONT EAT GREEN POTATOES!!! :o

Rachel--24 Collaborator

Jersey,

The baby birds in the nest have been there a couple weeks now...how long do they stay? I came home to another big mess on Sat. and one of the birds was dead on my doormat. Don't know what happened....maybe he fell out of the nest? Maybe got thrown out? It made me sad. I'm getting tired of the mess though...its been like 2 months almost. :huh:

:lol::lol: Sorry I am laughing Rachel, but the way you described what is happening to your computer made me giggle. Sounds like your computer is possessed.

I hope you get it figured out soon.

:lol: It definately wasnt funny yesterday. I wanted to break the whole thing off so that it would stop popping open. I was punching it and everything but it wasnt phased at all....just kept on going. :blink:

christine 25 Newbie

Hey guys, about the potatos and avoiding the green part,,, my doctor even agrees.

He once said, that it is important to not eat the eye of the plants, those are the most poisonous parts.

Like the green eye at the top of a tomato, or other plants the bit where it was once attached to the vine, or, the eyes or sprouts that form on the outside and a bit unwardly on potatos, I am not sure exactally why, he didnt go into a big explanation.

I cut out the green or brown parts and if I eat a tomato I take out the core and of course the green eye.

Christina

christine 25 Newbie

I find that my body is just plain irritated by a lot of foods, environment. And when after I eat I get headaches and sticky mucus forming in my mouth and nose. Somtimes its white, and foamy. I get aches and puffiness too. And im trying to figure out how to solve this, its getting better tho, and helps by reading this board.

I have pinpointed one chemical, caffiac acid as a real problem.

Yesterday i had some Caffine and was miserable and swollen the rest of the day with a headache and achey jaw.

No matter what I ate afterwards I felt worse, and my throat was closing up a little bit.

I have found that spicy cyanne or my fresh hot pepper sauce actually makes me feel better. Cause you would think it would be irritating. At fist my nose runs a bit but then I can blow it and I feel relief and not as pressure headed, and it helps my arthritis. Im going to make my own hot sauce today when I get time.

Its my first day off work in 2 weeks I have been working 50 hours or more, so ive been really busy lately. I have to go to the grocery store to buy some food, im running out and today I had to eat a salad for breakfast, still hungery. Let you all know how im doing. and the progress im making, im getting pretty agressive with this.

jerseyangel Proficient
Jersey,

The baby birds in the nest have been there a couple weeks now...how long do they stay? I came home to another big mess on Sat. and one of the birds was dead on my doormat. Don't know what happened....maybe he fell out of the nest? Maybe got thrown out? It made me sad. I'm getting tired of the mess though...its been like 2 months almost. :huh:

I hate to say this Rachel, but it took almost all summer for the birds to clear out completely--I don't remember exactly how long, but it went on a while. After they left, we used the power washer and cleaned everything thoroughly--it was pretty gross by that time! That was when we vowed not to let that happen again :D Sorry to hear about the baby bird, though :( --it's funny because I didn't want them there, but once they layed the eggs, I didn't want anything to happen to them! I think all of our "babies" made it, but at one point, we did find an egg that had fallen onto the porch and broke. We have this huge tree in the front yard--I don't understand why they just don't go there--it's much quieter than our front door :blink:

Rachel--24 Collaborator
I hate to say this Rachel, but it took almost all summer for the birds to clear out completely--I don't remember exactly how long, but it went on a while.

Darn. :(

I actually thought they were gone this weekend because it was real quiet and I didnt see the mommy and daddy flying back and forth like the previous weeks. Last week I could see the babies looking out of the nest and I could hear them chirping. It was very quiet this time so I thought "Cool, I'll just clean up this mess and deal with the nest later". I hosed everything off....it was nice and clean. Then the next time I came out the front door there was more poop on the doorstep!!. Then I saw the birds. :(

I found a shell too about 2 weeks back when the babies first appeared. There was nothing but a shell so I hope that one "made it" and it was only the shell that fell out. Funny thing is, I imagined the eggs as being the size of eggs we buy in the store... but they werent...they were very small. Reminded me of the little candy cadbury eggs in the bag you get at Easter. It even had little speckles all over it.


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jerseyangel Proficient
:D:D You're right about the eggs! The one I had looked like a blue Cadbury egg--those little birds must be really packed into those things! :lol:
Green12 Enthusiast
Oddly, Rachel Ray is one of my least favorite show hosts, but I do like her show, lol. She always has the most interesting tips. I didn't notice the sticky stuff when I first started buying cucumbers...that may be because I wasn't trying to really wash them...I was just rinsing them off...when I started to wash them with soap that's when I noticed the sticky stuff. It kind of turned my stomach...people eat cucumbers all the time without peeling them... :o

I don't actually watch her show too much, but I think she has a great personality, really bubbly and enthusiastic about everything. But when I do watch, you are right, she has a lot of great tips and gives lots of little tidbits of information when it comes to food and cooking. I actually remember her saying the part about her only buying a certain type of cucumber, I just couldn't remember what and why.

My favorites are Giada DeLaurentis(sp?) and Paula Dean.

:lol: It definately wasnt funny yesterday. I wanted to break the whole thing off so that it would stop popping open. I was punching it and everything but it wasnt phased at all....just kept on going. :blink:

Did it ever stop Rachel? I'm not a very tech savy person, I know my way around the computer as far as the basics go but that's about it. I wouldn't even begin to know what it could be or what to tell you, so I am not much help in that department.

Maybe your computer has ED! :D

:lol::lol::lol::lol:

Mitch (my hubby) is almost to the point where he has to quit drinking his fluids in prep for tomorrow. He won't get to eat until dinner time. Such a bummer, but at least he got in quick for the colonoscopy. At least it's not Tues, Wed, or Thur...those seem to be the busiest days.

How did the colonoscopy go for your husband? Wasn't that today? My dad is getting his done next Monday.

miamia Rookie
Donna,

Good to know about the cucumber skins. I actually havent eaten the skin in over a year...I peel everything....I get a little crazy with my peeler. :D

I got some home grown carrots I'm munching on right now. My mom brought me some stuff from her father in law's garden. :)

You could try the tortillas again and see if you react. If you're ok with them thats one extra thing you can eat...just dont overdo it like I always do. :)

The enzymes are Digest Gold from Enzymedica. They are pretty expensive ($50 for 90 pills) but I got bad reactions to all the other ones I've taken. I'll let you know about the drug after I call them today and get some info.

I liked the mango tree too but the real you is better. :)

Funny thing is for some reason I always thought it was an avocado on the tree. :ph34r:

Judy.

DONT EAT GREEN POTATOES!!! :o

Rachel-

Th digestive enzyme I take is AbsorbAid- its in a powder form ahich is best for me baduse of malabsorbtion issues. Its pretty much everything free in terms of gluten, corn, etc. I might go for the corn tortilla. I think I have been over doing the food I found to sit ok because suddenly it does not seem so ok anymore!!

Random question-

has anyone found a cereal they are ok with?

Miamia

AndreaB Contributor
How did the colonoscopy go for your husband? Wasn't that today? My dad is getting his done next Monday.

We just finished dinner. My hubby is happy to be able to eat again. He has one polyp. It was not removed since the tissue has grown up with it. He has a consult with another doctor on Thursday and will then be scheduled for surgery to remove it. They say it doesn't look cancerous which is good. He didn't have anything but water yesterday (his choice) and nothing until 4:00 today. The hardest part waiting this late in the day was to not be able to drink. I went through that with my c-sections but the prescheduled ones were at 10:00 and 12:00 respectively so it wasn't quite so long for me. My daughter's was scheduled for the same day about a week before she was due because of stress. I had just started prelabor and her heart rate dropped with every small contraction. We had had a partial rupture of the placenta that was noticed about a week before that. The doctor who did the surgery mentioned it was old, don't know what that meant. The other two were repeat sections, no problems.

Judyin Philly Enthusiast

WHAT A 'HOOT' THIS THREAD IS.....GOING FROM BIRD EGGS TO CARROTS.

YEP, POSTING NOW ABOUT CARROTS.

WENT AND GOT THE RED POTATOES AND A BAG PROBABLY NOT ORGANIC BABY CARROTS AND OPEN THEN AND WASHED THEM ..THEY DIDN'T FEEL AS 'GREASY' BEFORE WASHING..WASHED THEM AND SOAKED THEM AND PATTEN THEM DRY 6 TIMES...

WHAT THE HECK ARE THEY PUTTING ON OUR DANG FOOD....

CUCUMBERS SLIMY, CARROTS, GUEY..WHAT THE HECK.. :blink::huh::o:unsure::ph34r:

THERE IS SOME PRODUCT OUT THERE MY CHIRO TOLD ME ABOUT THAT YOU WASH PRODUCE IN ANYONE KNOW WHAT IT IS...ALL WE SHOULD BE WASHING OFF IS DIRT AS I SEE IT.

LOVE

JUDY

Rachel--24 Collaborator
Random question-

has anyone found a cereal they are ok with?

Negative on the cereal....for now. I'm feeling pretty optimistic right now though. :D

Rachel--24 Collaborator
Did it ever stop Rachel? I'm not a very tech savy person, I know my way around the computer as far as the basics go but that's about it. I wouldn't even begin to know what it could be or what to tell you, so I am not much help in that department.

Yeah....it stopped when I shut the freakin thing down. I'm sure when I turn it back on its gonna start doin' its thing again. I swear it seemed like everything was going wrong yesterday. Besides the computer getting possessed and the birds crapping all over my doorstep my cat barfed all over, my lawn was dying cuz somethings not right with the timer for the sprinklers and I wasnt there all week. When I drove to get groceries I was on the freeway and the van in front of me blew a tire and all the pieces of that tire hit my car, scratching the hood. I was still not feeling good from all the dried fruit I ate and when I hit the road to drive back to my Mom's it was 9:00 at night and I got stuck in major traffic. The kind of traffic where you just sit there forever....I thought I was gonna lose it. Its an 80 mile drive and I was doing it inch by inch. OMG...I'm getting stressed just thinking about it. I got to bed around midnight and the alarm goes off at 3 am for me. It was NOT a fun day yesterday. Today is alot better though. :)

Green12 Enthusiast
Rachel-

Th digestive enzyme I take is AbsorbAid- its in a powder form ahich is best for me baduse of malabsorbtion issues. Its pretty much everything free in terms of gluten, corn, etc. I might go for the corn tortilla. I think I have been over doing the food I found to sit ok because suddenly it does not seem so ok anymore!!

Random question-

has anyone found a cereal they are ok with?

Miamia

I don't seem to have problems with Erewhon Crispy Brown Rice, the gluten-free version. You have to make sure it's the gluten-free version of the Crispy Brown Rice with the dark blue front, not the "wheat free", original, or salt free (they have different colors on the front). It only has brown rice, brown rice syrup and sea salt.

The problem though is what to put on it, because I don't seem to do well with milk or milk alternatives. So no cereal for me.

THERE IS SOME PRODUCT OUT THERE MY CHIRO TOLD ME ABOUT THAT YOU WASH PRODUCE IN ANYONE KNOW WHAT IT IS...ALL WE SHOULD BE WASHING OFF IS DIRT AS I SEE IT.

LOVE

JUDY

So true Judy, they shouldn't be putting this crap on our produce.

I think there are several products designed to do just that, clean produce, and I have heard of other things as well- I just can't remember. One might be citricidal (sp?) but don't quote me on that.

Yeah....it stopped when I shut the freakin thing down. I'm sure when I turn it back on its gonna start doin' its thing again. I swear it seemed like everything was going wrong yesterday. Besides the computer getting possessed and the birds crapping all over my doorstep my cat barfed all over, my lawn was dying cuz somethings not right with the timer for the sprinklers and I wasnt there all week. When I drove to get groceries I was on the freeway and the van in front of me blew a tire and all the pieces of that tire hit my car, scratching the hood. I was still not feeling good from all the dried fruit I ate and when I hit the road to drive back to my Mom's it was 9:00 at night and I got stuck in major traffic. The kind of traffic where you just sit there forever....I thought I was gonna lose it. Its an 80 mile drive and I was doing it inch by inch. OMG...I'm getting stressed just thinking about it. I got to bed around midnight and the alarm goes off at 3 am for me. It was NOT a fun day yesterday. Today is alot better though. :)

So sorry you had a day where everything seemed to be going wrong Rachel :( That always happens once in a while, like all the stars are not aligned in one's favor or something, and everything that can go wrong does. Yesterday must have been your turn. Good to hear today is a better day :)

Green12 Enthusiast
We just finished dinner. My hubby is happy to be able to eat again. He has one polyp. It was not removed since the tissue has grown up with it. He has a consult with another doctor on Thursday and will then be scheduled for surgery to remove it. They say it doesn't look cancerous which is good. He didn't have anything but water yesterday (his choice) and nothing until 4:00 today. The hardest part waiting this late in the day was to not be able to drink. I went through that with my c-sections but the prescheduled ones were at 10:00 and 12:00 respectively so it wasn't quite so long for me. My daughter's was scheduled for the same day about a week before she was due because of stress. I had just started prelabor and her heart rate dropped with every small contraction. We had had a partial rupture of the placenta that was noticed about a week before that. The doctor who did the surgery mentioned it was old, don't know what that meant. The other two were repeat sections, no problems.

I don't know how I would do that, go without food and water for such a long period of time, especially with my blood sugar issues and I tend to get really really dehydrated and I need water frequently :unsure:

Good to hear it all looked pretty good as far as the one polyp. Keep us posted as to what happens with the next consult and surgery.

AndreaB Contributor

GGRRRRR. :angry:

I had to call my mother to remind her not to give the kids gluten. :blink: She brought cookies down for them :o while she was here watching the kids since I had to go with Mitch to the hospital. We don't have any obvious reactions but Micah already tested through enterolab with mild malabsorption.

Rachel--24 Collaborator
I am curious as to what the meds they are gonna give you for your gut are. You'll have to let me know when you find out the name.

Ok...I talked to the pharmacist tonight and I'll be getting the drug either Thursday or Friday. I found the info. my doctor gave me as well. Its called Ketotifen and its an antihistimine. I'm getting it from a compounding pharmacy in Washington. The paper I have says its not commercially available in the US.

The pharmacist told me that its very well tolerated by the people who take it. The people taking it are highly sensitive and the drug is pure without all the stuff we can react to. He said the only side effect is drowsiness that can last anywhere from 2 days to 2 weeks....everyones different. He's been on it himself for leaky gut/gluten intolerance. He said he's been on it 2 months and he's now able to eat fruit again and he's sleeping better...the drowsiness went away after 4 days for him. He said he's had people come in wearing masks cuz of their sensitivities but after a month or so taking the drug they are no longer wearing masks.

I got a months supply...he said it takes 6 months to 1 year on the drug for the intestinal lining to completely heal.

Heres some info thats on my paper.

Ketotofin

1. Antihistimine that reduces the harmful effects of histimine that allows the mucous layer to come back and heal the intestinal wall.

2. Generally taken: 1-2 tablets 3x daily 30 minutes before meals for about 6 months.

Other GI healers

1.Glutamine

2. Probiotics

3. Abstain from gluten if intolerant

-extremely small amounts of gluten can cause major mucosal damage if gluten intolerant.

4. Stress management

5. Rotating foods and avoiding foods that irritate the digestive tract.

Functions of intestinal mucous layer (epithelial layer):

The mucous layer is a very thin one cell thick wet area that lines the intestinal walls, lungs, eyes, nasal cavaties and vaginal wall. It serves the following functions:

1. Protective barrier-protects and covers mast cells that contain histimine.

2. Activates enzymes

3. Secretes antibodies made from the intestinal wall.

4. Prevents yeasts and parasites from adhering to the intestinal wall.

Events leading to "leaky gut syndrome":

The mucous layer becomes damaged due to the below causes and exposes mast cells. This triggers release of histimine from mast cells that line the intestinal wall. Histimine trigers a cascade of events taht leads to a deep inflammation in the intestinal wall. This causes the intestinal wall to become "leaky" or permeable and large molecules that normally would require further digestion are absorbed through the intestinal wall into the blood stream. This leads to your bodies immune system attacking these large molecules and causing an allergic reaction to food. Depending on your genetic make-up, this can lead to asthma, rheumatoid arthritis, eczema, psoriasis and possibly other immune disorders.

Causes of damaged intestinal mucous layer

1. Gluten Intolerance

2. Chronic Stress - Stimulates cortisone from the adrenals which destroys the mucous layer

3. Steroids - e.g. prednisone and cortisone

4. Alcoholism

5. Certain antibiotics

6. Parasites/dysbiosis of the GI tract

7. Chronic use of nonsteroidals

Summary of events leading to Leaky Gut Syndrome

Above causes leads to damaged intestinal mucous layer leads to increase in mast cell exposure leads to histimine release leads to inflammation of intestinal cells leads to leaky gut leads to immune system attacking large molecules.

Other general causes of "Leaky Gut Syndrome"

Chron's Disease and other severe inflammatory bowel disorders.

2. Chronic Giardiasis (parasitic infection)

Sooo...I'll be taking that drug to stop all the histimine problems. We'll see if it works..I'll keep posting of course. :D

I have definate histimine reactions after eating or getting around chemicals. My veins swell and this causes alot of pressure in my head, my nose gets stuffy, my eyes get sticky, and my skin gets itchy. If this stuff gets better I will be sooo happy. Keeping my fingers crossed. If it doesnt work...at least I gave it a try. :)

AndreaB Contributor
Yeah....it stopped when I shut the freakin thing down. I'm sure when I turn it back on its gonna start doin' its thing again. I swear it seemed like everything was going wrong yesterday. Besides the computer getting possessed and the birds crapping all over my doorstep my cat barfed all over, my lawn was dying cuz somethings not right with the timer for the sprinklers and I wasnt there all week. When I drove to get groceries I was on the freeway and the van in front of me blew a tire and all the pieces of that tire hit my car, scratching the hood. I was still not feeling good from all the dried fruit I ate and when I hit the road to drive back to my Mom's it was 9:00 at night and I got stuck in major traffic. The kind of traffic where you just sit there forever....I thought I was gonna lose it. Its an 80 mile drive and I was doing it inch by inch. OMG...I'm getting stressed just thinking about it. I got to bed around midnight and the alarm goes off at 3 am for me. It was NOT a fun day yesterday. Today is alot better though. :)

Rachel,

Sorry yesterday was such chaos. Glad today was better for you.

Keep smiling! :D

Mango04 Enthusiast
The paper I have says its not commercially available in the US.

I think that in and of itself is a very good sign! I hope it works for you!

christine 25 Newbie
Ok...I talked to the pharmacist tonight and I'll be getting the drug either Thursday or Friday. I found the info. my doctor gave me as well. Its called Ketotifen and its an antihistimine. I'm getting it from a compounding pharmacy in Washington. The paper I have says its not commercially available in the US.

I have definate histimine reactions after eating or getting around chemicals. My veins swell and this causes alot of pressure in my head, my nose gets stuffy, my eyes get sticky, and my skin gets itchy. If this stuff gets better I will be sooo happy. Keeping my fingers crossed. If it doesnt work...at least I gave it a try. :)

Thats, cool.

I hope that makes you feel optimistic.

You said you just started taking the enzymes again? And you also going to introduce this new drug in a few days. That will be two new variables. Do you think the enzymes are helping?

I'll have to look it up.

K

You can respond to my posts ya know...

christine 25 Newbie

"Ketotifen fumarate (Zaditor®) is an H1-antihistamine available in two forms. In its ophthalmic form, it is used to treat allergic conjunctivitis, or the itchy red eyes caused by allergies. In its oral form, it is used to prevent asthma attacks. Side effects include drowsiness, weight gain, dry mouth, irritability, and increased nosebleeds."

from:

Ketotifen

From Wikipedia, the free encyclopedia

Case stydy

"Ketotifen is a benzocycloheptathiophene derivative administered as a prophylactic agent in the management of bronchial asthma and allergic disorders. Although widely promoted as an inhibitor of mast cell degranulation, its true mode of action in asthma remains obscure, and may also include direct histamine antagonism, impaired release of inflammatory mediators by basophils, inhibition of activated eosinophils and suppression of T-cell recruitment.8

Ketotifen has been used successfully to treat a number of allergic disorders, including eosinophilic gastroenteritis, recurrent idiopathic anaphylaxis and chronic urticaria.13 It is of interest that two of our patients professed an allergy to penicillin, and that one had suffered a prior episode of eosinophilic pneumonia. Although the colonic biopsies were not specifically assessed for mast cell numbers or products of mast cell degranulation, none of our patients showed evidence of peripheral or mucosal eosinophilia when ketotifen was initiated, and none had other systemic manifestations of allergy. It is unclear, however, whether their symptomatic improvement was a result of an anti-inflammatory effect of ketotifen, or treatment of an unrecognized concomitant allergic disorder."

looks like it has antihistamine, mast cell inhibiting properties, and also it modulates the immune system somehow as well. Sounds like it may have many uses, you said it was used to aid healing leaky gut.

I have tried a lot of antihistamines and mast cell blockers, I havent had sucess, but I havent tried this drug tho either, so I have no idea. I hope this works for you!

Side effect is weight gain, arent you excited if that turns out to be true?

christine 25 Newbie

Question for everyone.

Has anyone ever tried NO-Fenol?

I am thinking of buying it, to help with phenols.

The last 2 enzyme products I bought, one was Jarrow, made me feel worse so im kind of leary.

It is expensive, but-

I've read good things about it.

C

dlp252 Apprentice

Christine, I've never tried that, but it sounds interesting!

Rachel, the antihistamine sounds interesting too.

Julie, I also like Giada and Paula...Paula and Alton Brown I think are my favorites.

I'm still doing okay...today I've reintroduced my vitamin C tablets, and in a couple of days I'll try to add back my flax oil.

penguin Community Regular
Does anyone know the average blood sugar level without fasting? I just did mine at my mom's and it was 122.... is that good...bad...or ugly.... I'm not knowledgable about sugar levels.

When was it taken? Fasting? Random? Just after eating? 2hours after eating?

Here's a site that might help: Open Original Shared Link

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    • Lynnard
      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      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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