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Omg...i Might Be On To Something

Rachel--24

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AndreaB Contributor
AndreaB
Posted
Gosh--is anyone else as bored with me as I am :lol:

Not at all, now stop it! :P:lol:

I'd want answers too and I'm glad you are continuing to dig for them. To me there is something going on if you're still that sensitive, plus the pressure, anxiety etc.

How long have you been diagnosed now......2 years? Your gut should be much better. Have you tried probiotics. Thought about bioset? Wait a minute. What all did you kinesiologist (how do you spell that word? :ph34r: ) have to say? I know you mentioned vaccines was part of the problem. I wonder if you could find a good bioset person or even an ART person to try and nail some things down.

I'll be waiting for your report of your doctors appointment next week. Have you looked up LLMD's near you....just in case?

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Rachel--24 Collaborator
Rachel--24
Posted
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I'm pretty tired (he's an hour away and it was a 2 1/2 hour appt so it took me like 5 hours total) but I feel much more optimistic about things then I did yesterday. :)

Bev...its so good to see that you're feeling alot better about things today!! It sounds like you'll start getting some answers finally. I'm really excited for you. :)

Glad to hear you were pretty informed going in. ;)

I've learned to always always know my stuff before seeing the Dr....that way you can really tell how knowledgeable the Dr. is. It really puts me at ease when the Dr. is familiar with everything...and has alot of experience.

I'm also really interested in how they'll look at your tissue for Lyme.

I would also mention your experience with your old apartment....the worsening of symptoms, vomiting, etc. I always kind of thought that might be due to mold. <_< If you have Lyme and other issues it could lead to that kind of sensitivity to mold.

I'll be waiting anxiously to see what they can figure out. :)

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

I got my appt set up for Monday. I'll be having the CD57 done and liver/kidney tests.

Donna...we'll probably be getting our results back around the same time. :)

CarlaB Enthusiast
CarlaB
Posted
The perfect high heel is skinny and 2 1/2 inches approximately in height. It can be a sandal or a closed-toed pump. :)

I like 4 1/2 inch heels! You can generally tell how good/bad I feel based on whether I'm wearing heels or flats ... there is no in-between for me. Last Sunday I wore heels to Mass. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
It makes sense that there's something else possibly going on--or maybe I had a lot of damage from being undiagnosed for so long that this might just be it for me.

Either way, I'd like to know in case anything can be done.

Gosh--is anyone else as bored with me as I am :lol:

Patti.....heck no....I've never found you to be boring. :)

I also dont think this is just the way its gonna be for you...the body is capable of doing amazing things as far as healing itself. I would have to think that your ongoing symptoms are because something is getting in the way of that healing process.

Oh and I do still have that pressure/fullness in my head. I think its from candida because when I went on that strict candida diet a couple years ago...taking nystatin and other antifungals...the head stuff improved maybe 85% or more. :o

When I tested with Enterolab and mistakenly believed gluten was the only cause....I went back to normal foods...but gluten-free of course. Slowly within a couple weeks I noticed I wasnt having the same energy I'd had all summer....also my head got all full again...tongue got white again....brain got fuzzy again...etc. :(

I'm hoping to start getting this better under control again.

It was during that time that I was totally avoiding anything to feed candida that I felt best but also because of the improvement I was really really feeling it when I did anything to upset my system...usually caused by supplements. I could tell that something more than candida was going on....I was just way too sensitive to stuff. It seemed completely unnatural. <_<

tabasco32 Apprentice
tabasco32
Posted

I was just wondering how to keep calorie intake and weight on with so many restrictions? I need a 2,000 calorie diet and I am only eating about 700 to 900 calories a day. I am eating more now but I need more calories but don't know what to eat. I always feel bloated and constipated and I am afraid to eat. Any suggestiong? Any safe weight gainers I am desperate! I am now hypoglecimic. When I eat starches and stuff I get depressed and sleepy in seconds. But I need this for some weight! So confused.

jerseyangel Proficient
jerseyangel
Posted
How long have you been diagnosed now......2 years? Your gut should be much better.

That's what I think, too. I did do a search for LLMD's here and there are several in North Jersey (we're in central Jersey, so not too awful far)--just in case it gets to that. I don't see the Kinesiologist anymore, as I didn't feel the corrections were helping any. He did get my sensitivities right--although I found it necessary to do an elimination diet myself just to make it clear in my mind.

I guess I'm the type that deals in facts and I need proof--and to be able to understand all the why's and everything.

I also dont think this is just the way its gonna be for you...the body is capable of doing amazing things as far as healing itself. I would have to think that your ongoing symptoms are because something is getting in the way of that healing process.

Yep--but what the heck is it? It's interesting about the candida--I do eat sugar, and more than I should at that. It's my one dietary vice. I wouldn't be at all surprised if that was a big factor in this.

I've been getting the head pressure more again lately, and I always think of you when it happens--anyway thank both of you for helping me brainstorm some more about this. Hopefully I'll have more ideas after next Friday.

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morganb Newbie
morganb
Posted

Thank you for all the birthdya wishes :D And everyone was right... I loved the purse :rolleyes:

It's summer now! Let's see if I'm on here like I was last summer...it might just take me a while to catch up on everything...

CarlaB Enthusiast
CarlaB
Posted

Patti, my LLMD is about 2 hours north of NYC. He's the president elect of ILADS, and I highly recommend him!! I like that he addresses all angles -- metals, candida, celiac (he tests everyone unless they've already been tested), supplements, detox, etc.

I don't know if he's closer or farther from you than the others in NJ.

dlp252 Apprentice
dlp252
Posted

I am having so much trouble with this website today, lol. Now it won't let me go back to previous pages, so I'm sorry if I'm replying hodgepodge to stuff.

Patti - we could NEVER be bored with you. I agree with everyone else that there has to be something else going on and I think if you find a good LLMD they would explore a lot of things, not just lyme. That's what mine (also Rachel's) is doing and it really is a relief. I hope you feel better soon!

Morgan - glad you liked your present. I'm turning into quite the purse fanatic, lol.

dlp252 Apprentice
dlp252
Posted

<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

CarlaB Enthusiast
CarlaB
Posted
<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

:lol::lol::lol: cute picture

It's softball season ... I'm practically afraid to walk in the grass ... Adam and I go on long walks ... I'm afraid to walk under trees -- I think I need to wear a hat. I'm SOOO glad we don't live in the country anymore, I was already afraid of most of the property due to poison oak, which goes systemic with me ... can you imagine now with the ticks?

Mtndog Collaborator
Mtndog
Posted
<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

OMG you are just like me!!!!!!!!!!!!!!!!!!!!!!!!!

Patti-Never mistake gentle and kind for boring!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

AndreaB Contributor
AndreaB
Posted
It's summer now! Let's see if I'm on here like I was last summer...it might just take me a while to catch up on everything...

It'll be nice to see you more again. :)

<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

You never know. :ph34r::P

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

Donna...I was wondering if maybe you're feeling worse because of all the B vitamins?? :unsure:

I dont know....but if you're even half as sensitive to yeast and molds as I am you might not do well with them. I know that if I attempted taking B-vitamins I'd go downhill fairly quickly. The B-vitamins are from yeast...its usually recommended people who are dealing with Candida should avoid them. I got really sick from B-vitamins. :(

I havent taken them in more than 2 years.

I dont know how long you've been on them but just thought I'd suggest it. I know we've discussed it before...but just in case you forgot. ;)

NoGluGirl Contributor
NoGluGirl
Posted

Dear Carla,

I could never wear heels that high! :o I would fall flat on my face! My limit is three inches for high heels. You would like the shoes in Frederick's of Hollywood's catalog. They have some beautiful shoes, but most of them are too high for me!

Dear Patti,

We could never get bored with you! ;) We love you! Don't worry, there will always be a place in Rachelville for you! In fact, I do not think we would let you leave! You have no choice but to stay put! :P

Dear Morgan,

It is so nice to meet you! I am glad you had a great birthday. That purse is awesome! You should have fun with that! We all look forward to seeing you more on the thread!

Dear Everybody,

Well, I had another fight with my parents, big shock, huh? Naturally, it was about me getting a job and how expensive the testing for Lyme and Celiac is. :angry: I am so tired of this. I was sick again tonight. I have a feeling it was the potato chips. Too much fat makes me as sick as gluten. :( Incidentally, the dog got to go to the groomer's today. It is crap he gets to go to the salon but I don't! WTH?

Sincerely,

NoGluGirl

miamia Rookie
miamia
Posted
Andrea--At this point, I just don't know.

I have to be extremely careful with my diet or I get sick. I get nausea, D, cramping, my anxiety kicks up, I get dead tired, also that head fullness/pressure that I think Rachel gets--or used to get....I hate going out except for very familiar places.

And I don't mean with just gluten, but with all the other stuff.

I take very good care of myself, my diet is very clean, I get enough rest, good water--I don't work, so I don't have the stress of having to be someplace every day.

It makes sense that there's something else possibly going on--or maybe I had a lot of damage from being undiagnosed for so long that this might just be it for me.

Either way, I'd like to know in case anything can be done.

Gosh--is anyone else as bored with me as I am :lol:

We could never be bored with you!!!!! but I do know how you feel. Lately I feel like I go in circles- with different diagnoses - trying different things- supplements, meds foods, tests, doctors and nothing changes - I end up in the same place. Its is frustrating and yes BORING!! I never thought the most exciting thing in my life would be that I made pizza and didn''t get really sick yet that is the most exciting thing thats happened to me in months- yes not exactly an exciting life.

CarlaB Enthusiast
CarlaB
Posted
You would like the shoes in Frederick's of Hollywood's catalog.

Thanks for the recommendation, but I don't think so ... it's bad enough my adolescent boys see Victoria's Secret commercials in TV ... I don't need to start getting the Frederick's catologue!! :o:lol:

BTW, it's a little past 8, I'm dressed and ready for softball/baseball driving ... I CAN get up if I have to! I actually don't feel too bad, but I still think it's better to get the rest so I can heal faster.

miamia Rookie
miamia
Posted
I like 4 1/2 inch heels! You can generally tell how good/bad I feel based on whether I'm wearing heels or flats ... there is no in-between for me. Last Sunday I wore heels to Mass. :)

I have never been a heel girl I am all about comfort - jeans and sneakers!!( summer sneakers change to flip flops) although now I am so thin its mostly sweat pants and sneakers- no jeans fit me.

miamia Rookie
miamia
Posted
<----- me, laying in a pile of leaves in VERMONT...gee wonder where I could have picked up a tick, lol. :lol:

Donna-

I love this pic. I know you think you can work and so you should not necessarily go on disability- but sleep is such a crucial part of healing I think you owe it to yourself to take some time and really nurse your self and see if it can help to make a difference. Maybe rest and relaxation is a big piece of what you need to get better!!

jerseyangel Proficient
jerseyangel
Posted

Donna,

Your leaf pic brings back some memories...my friends in the neighborhood and I used to make leaf houses (we'd rake the leaves into "rooms" and make huge "mansions"--it all looked like a gigantic blueprint on the ground.) We'd play for literally hours on end, imagining various scenerios. Fun times :D

Mia,

Yep, I'm right there with you! My idea of a good meal anymore is one that dosen't make me sick after :angry: When it's something like pizza--that's a real bonus :lol: I did make a pretty good pizza the other night--homemade crust, no cheese :( , but sauce and veggies. Snuck some Hormel Pepperoni on, and it was fine. :rolleyes:

Carla,

Have fun today! Thanks for the doctor recommendation--I will most definately keep that in mind ;)

To all--Thanks for the sweet words! You have always been so supportive, and I really do feel welcome and safe here. I just added the "boring" because there I was again, going on about the same old stuff--and I really just had to laugh! :lol: Beats than the alternative ;)

Oh--high heels--I used to wear them once upon a time to work--for sometimes 12 hours at a time! :o That would kill me now--I stick with my Birkenstocks :P My piggies are spoiled :D

dlp252 Apprentice
dlp252
Posted

Okay, so it's not ALL previous pages I can't get to it's just 1012...what did you guys talk about on page 1012 that no one wants me to see. :lol::P:lol: I apologize if there's something there I need to respond to. :P

Donna...I was wondering if maybe you're feeling worse because of all the B vitamins??

I dont know....but if you're even half as sensitive to yeast and molds as I am you might not do well with them. I know that if I attempted taking B-vitamins I'd go downhill fairly quickly. The B-vitamins are from yeast...its usually recommended people who are dealing with Candida should avoid them. I got really sick from B-vitamins.

I havent taken them in more than 2 years.

I dont know how long you've been on them but just thought I'd suggest it. I know we've discussed it before...but just in case you forgot.

Yeah, the Bs were the first thing I suspected when I got the bad D only I'd been taking them for a week or two before the D happened. Anna tested them and they tested SOOOOO good that she said my body was really wanting them.

All previous attempts at B vitamins have not gone well, but these seemed to be okay...one is a liquid and one is a sublingual neither of which I'd tried before. I can take some mutli vitamins with Bs in them, but this was among the first time I've tried just B supplements by themselves.

I DID buy some B12 at Whole Foods a few months ago, but those didn't agree with me at all.

I don't know, maybe these just took a while for my body to react to. They also tested well at ART, but as we've seen with you, just because they test well doesn't mean our bodies won't react to them. That is just frustrating, lol. :lol:

I could never wear heels that high! I would fall flat on my face! My limit is three inches for high heels. You would like the shoes in Frederick's of Hollywood's catalog. They have some beautiful shoes, but most of them are too high for me!

The shoes I bought two weeks ago have about a 3-1/2 inch heel I think, and at least a 1/2-3/4 inch platform. I have really just taken a liking to platform shoes lately. :P However, that is saved for Sundays only...normally you'll find me in crop pants and my comfy slides or jeans and tennies. :P

but I do know how you feel. Lately I feel like I go in circles- with different diagnoses - trying different things- supplements, meds foods, tests, doctors and nothing changes - I end up in the same place. Its is frustrating and yes BORING!!

Yep, I know this too, lol. Yesterday I was sitting at my desk with a magnifying glass looking at my arms. My co-worker asked what the heck I was doing. Well, I had read on a thread at lymenet or here about someone having these little pin sized blood spots on their skin, and I've got them. I did a search and found a good picture on wikipedia with a good write up and it scared me, lol. Then I started thinking that what they wrote about those stupid spots sounded like it could be responsible for some of what's going on with me now.... I've got to stop researching stuff. :lol: Still it's time for a visit to the dermatologist anyway so I may have them check just to make sure it's not the serious kind, and I may show them to Dr. S too. :P

BTW, it's a little past 8, I'm dressed and ready for softball/baseball driving ... I CAN get up if I have to! I actually don't feel too bad, but I still think it's better to get the rest so I can heal faster.

I agree!

Donna-

I love this pic. I know you think you can work and so you should not necessarily go on disability- but sleep is such a crucial part of healing I think you owe it to yourself to take some time and really nurse your self and see if it can help to make a difference. Maybe rest and relaxation is a big piece of what you need to get better!!

I finally got a decent night sleep last night. Went to bed at 9:00 and while it took a little longer than normal to fall asleep (not usually my problem) I slept all the way through until 3:00. Then I think I actually dozed off again until around 5! I am still exhausted, but at least I'm not as sleepy, lol. :lol:

Your leaf pic brings back some memories...my friends in the neighborhood and I used to make leaf houses (we'd rake the leaves into "rooms" and make huge "mansions"--it all looked like a gigantic blueprint on the ground.) We'd play for literally hours on end, imagining various scenerios. Fun times :D

Ha, my uncle and I used to build forts. He's only 1 year older than I am...I'll be posting a picture tomorrow of him and I as babies. In California, we didn't have so many leaves, lol.

CarlaB Enthusiast
CarlaB
Posted

Donna, love the new picture.

I'm like the rest of you ... on normal days it's comfy shoes ... I was just looking at my Memphistos and realized, I really need a new pair, these are not going to hold up for a fourth summer. But, when Adam and I go out, or on Sunday, it's high heels. I'm also a Born fan ... just bought two pairs a couple weeks ago when I had my shopping spree. :ph34r: I needed a black pair AND a brown pair! :lol:

The new medicines are kicking my ___. They must be getting to the babs because my heart and breathing are causing me difficulty.

Well, off to the next game .... the kids are actually there already, they are playing at two different ball parks so I am just stopping at home to drop off a kid and go back to the other park. Sun and fresh air is probably good for me.

Oh, Donna, you can't get to 1012 because we locked you out ... we were talking about you and didn't want you to know what we were saying!! :lol::lol:

jerseyangel Proficient
jerseyangel
Posted

Sh-h-h Carla--you wern't supposed to say anything about that :ph34r::lol:

You know I'm just kidding, Donna :D

Now, I'm going to see if I can get to page 1012--maybe it's like a Twilight Zone episode and everything on that page never really happened.... :unsure: ,..or happened to someone else in a parallel universe. :o

CarlaB Enthusiast
CarlaB
Posted
Arggg...haven't been able to get into this website for most of the day, lol. :P

Thanks dear one! I'm almost at the point where I'd consider ambien or lunesta. Over the counter stuff doesn't do anything at all, and stuff like benedryl just keeps me MORE awake, lol. If the natural stuff I'm taking isn't working I might as well just cut it all out. Years ago, one of my co-workers gave me one of her sleeping pills...I think it was ambien--I cut it in half and took one half and that seemed to work okay back then. We'll see what the lyme guy says.

If I had more time off available I'd use that for a few weeks, but I've been so sick over the last 2 years that I've got virtually none left. I get SIX weeks a year!!! It's all but gone. I have about 7 days left but I'm afraid to use it, lol.

Hum, I've been getting lots of headaches lately too. I used to NEVER get headaches.

That's what I was afraid of. :(

I do believe it's official now. :P

Ditto and ditto.

Donna, this post of yours was on page 1012 ... it's very odd you can't get there.

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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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