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Omg...i Might Be On To Something

Rachel--24

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AndreaB Contributor
AndreaB
Posted

I also have a joint ache in my right knee. That got better going gluten/soy free but I'm still wondering about that as well. Maybe that's the mercury too, looking at that little list you posted Rachel.

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AndreaB Contributor
AndreaB
Posted
about bells palsy:

" Lyme disease is also a common cause of Bell's palsy, especially in the northeastern United States."

Wow, that's alot of stuff that could cause bells palsy. :blink:

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Wish it were clear that it was or wasn't Bell's Palsy.

I had NO droop, and NO paralysis. Just numbness of the skin, and that area of skin was slightly paler than the rest of my face.

The numbness went away the first time when my thyroid meds were adjusted, and came back just before I went off gluten, at which point it disappeared for good (I hope). (And my thyroid medicine has been steadily decreased, too :) )

Interestingly, that same patch of skin had had what the doctor insisted was a strep skin infection a couple of years before, which I thought was very odd, as I'd only had strep throat once in my life, though my brother had it numerous times. He did a culture, and said that it was negative, but he swore it looked exactly like every other case of strep skin infection that he'd ever seen. The antibiotic did clear it up, but I still think the whole thing was very odd. :blink:

My body totally refuses to do anything the "textbook" way. :ph34r:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
The "Rinne Bar" project is lots of fun and I intend on keeping it that way, thanks to everyone for your support. I'll be serving them in the Rachelville Juice Bar.

Rinne...I'm so happy for you. :D

I'm happy that you've created Rinne Bars. :)

I'm happy that you are in such good spirits. :)

I'm happy that you're back in Rachelville. :)

I'm happy that project Rinne Bars has been a success. :)

I'm happy that in Rachelville I can eat the Rinne Bars all day long...and not get sick. :D

CarlaB Enthusiast
CarlaB
Posted
I also have a joint ache in my right knee. That got better going gluten/soy free but I'm still wondering about that as well. Maybe that's the mercury too, looking at that little list you posted Rachel.

Not to alarm you, but that was my first Lyme symptom! Only for me it was the left knee.

Adam and I went for a LONG walk after dinner. We used to do this all the time, but last summer I could hardly make it around our short block. Cardio and walk in the same day! YAY!

AndreaB Contributor
AndreaB
Posted
Not to alarm you, but that was my first Lyme symptom! Only for me it was the left knee.

Adam and I went for a LONG walk after dinner. We used to do this all the time, but last summer I could hardly make it around our short block. Cardio and walk in the same day! YAY!

WooHoo!! That's great. Hopefully you'll continue feeling this good and this means you are over the worse of the herxes. That would be wonderful with summer coming up. :)

I'm keeping lyme in the back of my mind. That's another reason I want to do ART, along with finding out how big of a problem mercury (or other metals) is.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I'm keeping lyme in the back of my mind. That's another reason I want to do ART, along with finding out how big of a problem mercury (or other metals) is.

Andrea, keep in mind that ART is used in conjunction with lab work. I wouldnt recommend having a single ART session without following up with lab work. ART is more of a longterm method of testing. I would think for you getting actual labwork would be more cost efficient and more diagnostic.

Even though the bloodwork, urine or other clinical testing thats available isnt 100% reliable...ART is also only showing certain stressors on your body while you're being tested....its accuracy also relies heavily on the skills of the practitioner. Labwork should always be used to confirm the findings of ART or if labwork is inconclusive Art can then play an important role in putting the pieces together.

Its not really something you should do once and then treat based on the results of one session...ART is more longterm.

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rinne Apprentice
rinne
Posted

Decided to join the picture party but now I have to catch up on my reading. :)

AndreaB Contributor
AndreaB
Posted
Decided to join the picture party but now I have to catch up on my reading. :)

Cute! It's nice to see little girl Rinne. :)

Rachel,

So would you just suggest the mercury challenge? What bloodwork etc would I want to look into for the family? Talitha, Seth and myself being the ones I'm most concerned about, but I want to have everyone tested. Kinesiology (how ever you spell that :unsure: ) would be another option I'm sure.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
So would you just suggest the mercury challenge? What bloodwork etc would I want to look into for the family? Talitha, Seth and myself being the ones I'm most concerned about, but I want to have everyone tested. Kinesiology (how ever you spell that :unsure: ) would be another option I'm sure.

I would only suggest the mercury challenge for you...not the kids. Still....it would be better to take care of the amalgams before anything. I dont think you need bloodwork unless you wanted to test for Lyme.

ART is kinesiology. Its muscle testing but a little more advanced.

If mercury turns out to be your problem then I would assume the kids intolerances are coming from that. Breast milk excretes mercury and other toxins. I actually read that breast milk can be so toxic it would be illegal to dispose of it in a landfill. :blink: That comes from mercury mainly.

Maybe the kids are genetically slow detoxers making them more susceptible to it??

So I think you should find out the status of your own health and then if mercury is a big issue work with a good Dr. on possibly detoxing the kids. They arent sick so if they're having mercury issues its not severe and they should be able to take some kind of gentle detox.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Decided to join the picture party but now I have to catch up on my reading. :)

OMG Rinne...that picture is so adorable. :)

Very cute.

The Rachelvillians sure were an adorable bunch in childhood!! B)

Actually...we're still quite an attractive group of people who cant eat a whole lot. :P

christine 25 Newbie
christine 25
Posted
:blink:
rinne Apprentice
rinne
Posted

Rachel, your photo is very cute, you look like trouble. :lol:

And Donna so mischeivious. :)

Lymecentric! :lol:

:lol:

I am very punchy and tired todya, awoke this morning, drenched in sweat, from a dream in which I was studying very heavily for my FBI test, and then later, was at Maria Shriver's wedding parade.... :huh:

:lol:

OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

.....

Ferritin level at time of dx when I was tested was around TWO. At the six-month mark, it was 6, and now, fourteen months after initial dx, it is TWENTY-TWO. :rolleyes: [Normal for my size is 25 to 200. ] Can you imagine how much better I"m feeling? Hemoglobin was around 7 - it's now up to 13. Blood cells were seriously shrivelled when I was diagnosed (is that hematocrit?) and they are now totally normal size. Tissue transglutaminase at time of dx was literally OFF THE CHARTS - - it was greater than 100 and they don't measure past 100. IT is now down to THREE!!!!!!!!!!!!!!!!

Fabulosa.

Judy...you know we love you :wub: ....and YES...we do want you here!!! Its nice when you visit...but its even nicer whaen you stay awhile. :)

I completely agree. :) Judy I can't remember what I might have said other than they are a chocolate, banana and almond frozen treat, did a launch of them this week and I now have some orders starting to come in. I'm working on my home caterer's licence and finding a space for production. I'm still thinking about how I want to proceed but basically feel I have created a completely unique product that there is a demand for. I think that if I am smart about it you may be able to buy it sometime in the future. It is not only gluten and dairy free but totally delicious, most of the people who want to purchase it can eat gluten and dairy.

RACHELVILLE NEWS

Today there were new additions to the dictionary. They are:

Weed-eating pigs - pigs which consume marijuana and become intoxicated

Lyme-Centric - Centered around, related to Lyme Disease

The trial date for the Auxigro Lawsuit has been set. It has been arranged some of the Redneck Deer defending the town shall testify. Buck is the first to volunteer. His comment was "Git-R-Done!" Bongo, my favorite purple glittery bat wanted to testify, but I explained to him that the pink glittery berry scented tirds are not allowed in the courtroom by law. He was very disappointed. I told him he can make the statement to the press, though. He was happy. :lol:

Thanks for the updates. :)

Rinne, please say your new bars don't have coconut in them.....either way, I wish you much luck with them :)

Of course not, you know that in Rachelville the food is perfect. :lol:

Interesting about the fibroids--the one I had was 8 centimeters (grapefruit sized). So many women have them--there has to be more to it than meets the eye.....

I've got them.

Rinne...I'm so happy for you. :D

I'm happy that you've created Rinne Bars. :)

I'm happy that you are in such good spirits. :)

I'm happy that you're back in Rachelville. :)

I'm happy that project Rinne Bars has been a success. :)

I'm happy that in Rachelville I can eat the Rinne Bars all day long...and not get sick. :D

Thank you Rachel.

diamondheart Newbie
diamondheart
Posted
Interesting about the fibroids--the one I had was 8 centimeters (grapefruit sized). So many women have them--there has to be more to it than meets the eye.....

Stupid fibroids :angry: !

You'll be having me test for Lyme next :rolleyes: !

One thing I didn't mention was that at my doctor's visit in March he said my uterus was larger than it should be and asked if that was normal for me. I told him I didn't know. :blink:

I'm hoping it's not fibroids, but I'm hoping if it is that taking care of the amalgams and chelation will take care of it.

I agree that there has to be something that is causing these and that there are so many women that have them.

Andrea, I'd get it checked out. A simple transvaginal ultrasound will let you know. Better to know what your dealing with than not. In my case, my stupid doc who originally diagnosed me with fibroids said they were small and I didn't need to worry about them. Then, they got so big, I had to have them surgically removed :angry: . Once was enough for me! Most of the time, I don't think fibroids go away on their own and I haven't heard about any connection with mercury. I wouldn't be surprised if a virus or bacterial was the cause, but no one knows.

I learned some very interesting things with the birth intuitive today, and some of it was connected to the area where I had my fibroids. But I'm too tired to discuss it tonight. What an intense day it's been!

:blink:

Christine, I feel that way too sometimes ;) !!

AndreaB Contributor
AndreaB
Posted
I completely agree. :) Judy I can't remember what I might have said other than they are a chocolate, banana and almond frozen treat, did a launch of them this week and I now have some orders starting to come in.

These sound really good. Unfortunately for us, banana's don't like us. Also I'm assuming the chocolate has soy lecithin in it.

I learned some very interesting things with the birth intuitive today, and some of it was connected to the area where I had my fibroids. But I'm too tired to discuss it tonight. What an intense day it's been!

I'll be looking for your update when you feel up to posting it.

I don't have any pain or anything with the uterus. Wouldn't fibroids cause pain?

miamia Rookie
miamia
Posted

- I love everyones pictures!!

NoGluGirl Contributor
NoGluGirl
Posted

Dear Rachel, Andrea, Rinne, Patti, Bev, and Donna,

You guys are all so cute! I need to get a pic of me on here from when I was little. I will have to look around for them. There is bound to be a good one somewhere! I just have to find it!

Dear Rachel,

Slower is better with treatment! I am glad you found out what made you sick last week. It is frustrating having to do a slower treatment, but at the same time, you know it is the best option. You did not become ill in one day, and you will not get well in one. This is difficult to accept. In the long run, it is the wisest move.

That is so neat about your heritage! I had a friend whose mother was of Italian descent. There are many cool mixes in our culture. It was rumored we have Cherokee on my mother's side. We cannot trace it, though. They did not record it due to Native Americans being discriminated against.

Dear Donna,

Your heritage is really interesting as well! As far as I know, we only have Irish, English, and Scottish. Many people think I look exotic. :lol: A lot of people confuse me for Chinese. I have not idea. My theory is, it is in there really far back. All I know is, my great-grandmother and I look exactly alike with the exception of my hair length and eye color.

Dear Laura,

Thanks for the info on mycoplasm. I had never heard of that before. It is something you do not hear about every day! :lol: Hopefully, no one else has it! That is a nasty thing to have.

Dear Carla,

I agree that the Lyme Clan should dress individually. We all have our own style. Rachel needs to show her rachelness, and you need to show your carlaness. ;) All of us are special in our own way! The Lyme green nail polish would be fun to use! Can we paint Charlie's toe nails! :lol:

Dear Andrea,

That is so funny about you taking the horses through the McDonald's drive-thru! :lol: I love that! I bet that was so hilarious! People probably were like "What the...?" It had to be a blast!

Sincerely,

NoGluGirl

dlp252 Apprentice
dlp252
Posted

Rinne - adorable picture!!!!! And those bars....oh, sign me up, lol. :lol:

This mornings picture is of me and my cousin Deb. I can't have been more than 1 although I look younger, and Deb must have been new born since we're one year apart. That's my mom holding Deb.

I don't have any pain or anything with the uterus. Wouldn't fibroids cause pain?

Not necessarily, many people don't even know they have them. Mine did because they were big and there were more than 20 of them...they were pressing on all my organs and such by that time.

jerseyangel Proficient
jerseyangel
Posted
One thing I didn't mention was that at my doctor's visit in March he said my uterus was larger than it should be and asked if that was normal for me. I told him I didn't know. :blink:

I'm hoping it's not fibroids, but I'm hoping if it is that taking care of the amalgams and chelation will take care of it.

Andrea, I was found (on the pathology report after surgery) to have had a condition called adenomyosis. It is most frequently discovered on a post surgery report because it's difficult to diagnose. It happens when endometrial cells infiltrate the uterine wall. It causes the uterus to be larger than normal--mine was the size of a 14 week pregnancy. It is not necessarilily painful, but can cause heavy periods, cramping and clots. It is also more common in women who have had C-sections--one school of thought is that the incision lets the cells in initially, although they don't know what exactly causes it.

Fibroids don't always cause pain--it all depends on which type they are, the location and size. Many women never require treatment for them.

Of course not, you know that in Rachelville the food is perfect. :lol:

Yippee! I just read that they were almond, banana and chocolate based. I can't wait to be able to order them! :D Did I say yippee!!!! I miss frozen treats....

Your picture is so cute :D

AndreaB Contributor
AndreaB
Posted
That is so funny about you taking the horses through the McDonald's drive-thru! :lol: I love that! I bet that was so hilarious! People probably were like "What the...?" It had to be a blast!

Yep. :D

This mornings picture is of me and my cousin Deb. I can't have been more than 1 although I look younger, and Deb must have been new born since we're one year apart. That's my mom holding Deb.

Another cute photo. :)

Andrea, I was found (on the pathology report after surgery) to have had a condition called adenomyosis. It is most frequently discovered on a post surgery report because it's difficult to diagnose. It happens when endometrial cells infiltrate the uterine wall. It causes the uterus to be larger than normal--mine was the size of a 14 week pregnancy. It is not necessarilily painful, but can cause heavy periods, cramping and clots. It is also more common in women who have had C-sections--one school of thought is that the incision lets the cells in initially, although they don't know what exactly causes it.

Fibroids don't always cause pain--it all depends on which type they are, the location and size. Many women never require treatment for them.

Hm, that makes sense. He didn't say how big but did ask me about cramping and clots. I always used to have some back pain PMS but haven't lately. No big clots and heavy periods have been since the get go. They are actually better now than we I was younger.

I've had 3 sections and I was talking to Mitch about it after the appointment, wondering if the incision could be making things bigger in there.

My doctor didn't recommend anything else, so he must not be concerned at this point. He does recommend thermal scans instead of mammograms though. :)

CarlaB Enthusiast
CarlaB
Posted
Can we paint Charlie's toe nails! :lol:

Absolutely NOT! :lol: He can wear a man's Lyme green hat.

I actually haven't worn it lately ... right now my toenails are purple ... they're always painted ... year around!

Mtndog Collaborator
Mtndog
Posted
Exotic?? Me??? :unsure:

:lol::lol: Thats funny!!

My mom is Spanish/Italian and my dad is Hispanic (Mexican)

Yes, you look EXOTIC silly! You have that beautiful dark hair, eyes and skin. I was thinking Spanish. Shall we call you Penelope Cruz? Rachel Cruz? I've got it! Racquel 24!!!!!!!!!!

Andrea- how fun is it that you rode your horse through the drive-thru! So cool!!!!!!!!!!!!!!! He was beautiful...must have been hard to let him go. Spoons wasn't mine, I just rode him and showed him. He was actually a pony (big for a pony) but he was so good for me!!!!!!! We just did like training level dressage. I miss Mr Spoons :wub:

Patti and Donna- You guys are too cute! Donna- I bet you were a handful! Patti- I bet you were a saint!

Diamondheart- i want to hear mopre abouth this birth intuitive stuff.

SusieQ- My God- that is awesome that you are so much healthier! I am so excited for you! We need healthy people around us to remind us that it can be us sooner or later. Plus you are hysterically hilarious!!!!!!!!!!!! Speaking of which, if you go to the Tickle Me Elbow thread Nikki-UK had to get glasses and she wrote "Well, blow me if I didn't need new specs!" I almost died laughing. Only in Britain can you say that and not :ph34r: get looked at like a pervert. :ph34r:

Rinne- I'm so excited for you and your bars!!!!!!!!!! Ddo they taste like banana? Or just like dairy? They sound so good!

Rachel and Carla- I am AMAZED by all the knowledge you've accumulated and how persistent you've both been about beating the crap outta those Lymey yucks!

If I get diagnosed with Lyme, I will not wear a lyme green hat either. It's not my color. I will wear black in honor of those mean evil black flies that tried to eat me alive. Wait- what am I saying- I will wear a white hat in PROTEST!!!!!!!!!!!!!!!!!!!!!!!!! with black letters on it that say "Black flies must die"

I'm kind of cracking up here because babesiosis/babesia could be my nickname. My initials are BAB (now that I'm married they are BABO) but some of my friends still call me Babs. Now they will have to call me BABesia!!!!!!!!!!

Going to watch the Red Sox Yankees game today. :ph34r:

<-------------------------------------- New avatar. First dance recital- I think I was 4.

CarlaB Enthusiast
CarlaB
Posted

Beverly, you are so funny, too! It's so good to have you and Susan back!

Let's hope you don't have babs, too, even if it's a good fit with your name and all ... it makes it more difficult to kill the bugs!

And the things it does to my brain! I can tell a herx is coming by how mean I get! My son said to me recently that I'm reasonable with mistakes the kids make, but then sometimes they'll do something that is really nothing and I'll get so terribly mad about it! And it's true ... that's the first sign a herx is coming -- weepy and irritable.

I'm enjoying feeling better now ... I'm hoping the new meds won't make me feel too bad. It's pretty common to feel worse with new meds.

CarlaB Enthusiast
CarlaB
Posted

OMGOSH!! What a great picture!!!

My Dad gave my sister's husband (at the time, fiance) a picture of her in a dance costume like that!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Ok...I got 2 new pics up.

My avatar is from when I was 3 and my personal pic is me and my brother. I'm 5 and he's 4. :)

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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