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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast
Carla...no...I cant tolerate most processed foods....organic or not. :( I most likely wouldnt do well with Starbucks or anything like that. I dont know why I can have this ice cream (and sooo much of it)....but its only this one brand that I can tolerate...and only 2 flavors.

I LOVE starbucks though. When I start tolerating more things....Starbucks is one of the first things on my list! There is one right next door to BioSET and I am *always* tempted to go in...it smells soooo good when I walk by. :)

Me too Carla....thats a very cute pic of you and hubby. :)

When you said coffee ice cream, it seemed that it may work, but I forgot it was only one kind of ice cream. If I were you, I'd get a latte from Whole Foods first, not Starbucks ... I'm sure WF would use organic espresso, and I'm sure you would need that, too. Starbucks does have organic milk and organic soy.

Thanks :)

Rinne, I think Rachel has a good idea about making an appt. for down the line. I'm very against antibiotics, but I think most of that opinion has been formed by how badly my body handles them ... if it's Lyme, that would be the reason I handle them so badly, so if I can get rid of it with them, I'm all for it! Keeping in mind that I need to be rebuilding my immune system as the same time so that it can take over once I'm off them.


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CarlaB Enthusiast

Nothing in the mail today ... :angry:

AndreaB Contributor

Carla,

This week is getting really long. :(

Rachel,

Can't wait to see what bioset #1 says/does today.

Thanks for trusting me with your picture. :)

miamia Rookie
So one of the most important things I learned today is that a higher body temp. means that everything in the body is working BETTER. This is my goal for the month....to see if I can really raise my temp. and reduce sensitivities and FEEL BETTER! :D

Rachel-

wow thats alot if info thank you so much for posting all of it!! The body temp thing for me is really previlant - the cold makes my symptoms so much worse!! The problem is being indoors all day makes me feel sick too- kind of a no win situation- just short walks and lots of baths.

i hate the way i look lately...so thats why i took mine down. my face is so gaunt...i just don't look like "me"....some of the wedding pictures (from the wedding i was in a few weeks ago)...where they are "full body shots"...i look borderline disgusting (and no, i'm seriously not being dramatic....my body is just not built to be 96 lbs)

Laura-

I completly realte to this that is why I never change my photo becasue I don't allow anyone to take pictures of me anymore. The last few times someone did I cried looking at them- it is scary to see how thin I ahve become and for some reason it really shows in phottos - I think I walk around with a false image of how I really look and I am happier that way

Green12 Enthusiast

Hi all!

Rinne, I am so sorry you are not feeling well from the herxing. Please hang in there with all of that.

Laura, I haven't experienced the wasting weight loss like you have, and most of the others. When I am at my sickest I am massively swollen and it looks like I have gained enormous amounts of weight in a short time period, so maybe it is different circumstances, but I can wholeheartedly relate to the not recognizing myself in the mirror and looking at pictures that feature me in that way and I am disgusted, and I grieve. I grieve because I know that I am sick in those pictures and am reminded how much my body doesn't work. But I try to think about the fact that it is just my body, and it isn't "me", I am still "me" no matter what is on the outside. And we love you for "you" :):) . Feel better :)

Rachel, I have a thought. I have a stainless steel tea kettle that I warm up my filtered drinking water on the stove burner, and I drink warm water throughout the day (I can't stand drinking cold water, I have a huge aversion to it) Maybe this would be good for you to, to drink warm liquids, especially water? When you are at work I am wondering if you could use an insulated thermous to keep it warm (of course some of those thermouses make me sick, the plastic they are made of), not sure on your drinking habits/preferences ....just an idea I got.

Andrea, how is your head feeling today? I hope better.

Susie, whew! I am glad that coffee mate states that it is gluten-free. Hope you had a great day at work :D

Hugs and love to everyone :wub:

Rachel--24 Collaborator
Rachel, I have a thought. I have a stainless steel tea kettle that I warm up my filtered drinking water on the stove burner, and I drink warm water throughout the day (I can't stand drinking cold water, I have a huge aversion to it) Maybe this would be good for you to, to drink warm liquids, especially water?

Yeah...I'm drinking hot water. I just microwave my regular bottled water and drink it hot. :)

The Dr. wants me to drink my water this way too. I NEVER drink refridgerated water anymore....not since I got sick. I have a major aversion to it too....my water is always room temp.

Prior to getting sick I drank everything COLD....I used to use those cups that you keep in the freezer to chill your drinks. I would have never even considered drinking something that was room temp. <_<

The temp. thing is a big part of my problem. When I first started getting sick I was "abnormally" cold...at that time I had an overactive thyroid....which would noramlly raise my body temp. I guess the mercury and Lyme were "overriding" the hyperthyroid symptoms and making me cold. :(

I dont really drink anything when I'm at work. I used to drink soda all day but now I just dont drink anything. I could always bring a mug to work and microwave my water there...it would be helpful when I'm feeling REALLY cold. Otherwise I dont really see myself taking the time to go and heat up some water. :rolleyes:

linds Apprentice

ugh i hate waiting! Because i live in a small town they have to send all of my blood samples out of town to be tested. they said it would be at least a week and a half before they knew anything which is driving me nuts and it hasn't even been a week!!!!


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Rachel--24 Collaborator

WOOHOO!!

You guys wont believe this but OMG...melted HOT ice cream is soooooo good! :o

I had some on my lunch and I think it was the BEST hot chocolate I've ever had. :blink:

The other day I found some organic egg nog at WF that so far I've actually been ok with. I only drink a small glass at a time but its great that I can have some....I totally love egg nog. :)

So right now I mixed my ice cream and the egg nog together in a big mug.....all I can say is....OMG....I am so glad I decided to drink my ice cream! :lol:

Yup Mango...you said it...I've got some serious ice cream determination. :lol:

jerseyangel Proficient

You know what they say Rachel--"Where there's a will, there's a way" :lol: You were eating that ice cream, no matter what. :P

AndreaB Contributor

Linds,

We'll be bitting our fingernails along with you. :)

Rachel,

What are we going to do with you? :lol:

rinne Apprentice

Thank you all for your support.

A friend I was talking to yesterday mentioned a LLMD in Sante Fe that does alternative treatments so that may be a possiblity at some point but for the time being I am going to study this and see if I can continue to make improvements on my own.

Rachel, I am glad the hot ice cream is good, it sounds a little like drinking warm creme anglaise, I've done that :ph34r: and it is so good.

Rachel--24 Collaborator
Rachel, I am glad the hot ice cream is good, it sounds a little like drinking warm creme anglaise,

Creme anglaise?? :unsure:

It sounds fancy and sophisticated. :huh:

I'm not sure what that is but the hot ice cream wasn't anything like the hot chocolate that you make with chocolate powder in a packet and some water (with some tiny marshmallows as a bonus) .

Nope...THIS hot cocoa was thicker and creamier and DELICIOUS! It didnt even need marshmallows for flavor. :)

AndreaB Contributor
Nope...THIS hot cocoa was thicker and creamier and DELICIOUS! It didnt even need marshmallows for flavor. :)

That sounds really good Rachel.

Have you had your appointment yet?

rinne Apprentice
Creme anglaise?? :unsure:

It sounds fancy and sophisticated. :huh:

In my secret life I am fabulously fancy and sophisticated. :P:lol::lol:

It is a custard made with light cream, egg yolks, sugar and vanilla that is cooked on a stovetop until it thickens. One recipe I have for cinnamon creme anglaise says chill and add heavy cream to turn it into ice cream, so it seems it is ice cream before the ice part.

diamondheart Newbie

Quick drive by for me as well. My Chinese medicine doctor has told me not to eat anything cold, but my body temps are ok. My other acupuncturist just wanted to know if I go below 97 degrees, but I don't.

Carla, I use a digital basal body temperature thermometer so I don't have to worry about mercury. They probably aren't as acurrate, but a lot faster in taking your temperature.

I have started the BioSet treatment to try to clear my food allergies, at least most of them. My acupuncturist explained to me that it's about 60% effective but that I would be a good candidate as my digestive enzymes are good and I don't have that much intestinal inflammation. Also, he tells me that sometimes, one food allergy is causing the others, so there might be one core food allergy that he won't be able to clear. I'd be so happy if I "just" had to cut out gluten!! So far, I've just gotten treatment for clearing phenols, which I guess are really hard to avoid in foods and are in everything. My acu doesn't really attempt to explain everything to me. I ask him what are in the little vials he is testing, and when it's too complicated to explain, he just says "stuff". I want to speed up this process though and start going twice a week instead of once a week.

I'm getting a little worried though as some of the same feelings of cramping and nausea are coming back after going the bathroom. I am eating out a little more than usual since my hubby is travelling, so god knows what I'm really eating, even though I'm avoiding all the foods I can't have. Can't wait till he gets back home!

When I know more about how the Bioset treatment goes, I'll report back.

Claire

AndreaB Contributor

Thanks for the update Claire. We'll be looking for more in the near future. :)

Rinne,

That creme anglais sounds really good too. :)

Rachel--24 Collaborator

Andrea...I FORGOT to mention that my BioSET was canceled for tonight! :(

They called me today.....told me she had some kind of dental emergency....so no treatment today.

I was suppossed to get the Samento from her. :(

When I know more about how the Bioset treatment goes, I'll report back.

Claire

Claire....good luck with your BioSET treatments!

Yes....we would love to hear how things are going.....looking forward to hearing more. :)

It is a custard made with light cream, egg yolks, sugar and vanilla that is cooked on a stovetop until it thickens. One recipe I have for cinnamon creme anglaise says chill and add heavy cream to turn it into ice cream, so it seems it is ice cream before the ice part.

Rinne....yeah it sounds yummy!

It sounds alot like my unsophisticated HOT ice cream... :lol::lol:

I posted these on another thread but thought I'd put them here too since we've been talking about the body temp. thing.

Lyme disease can lower body temperature and create poor blood circulation. A person is also likely to feel cysts, lumps, and swellings in different areas of their body that often change and move. The bacteria walls itself off, and creates an environment in which it can grow and thrive and the person with the disease ends up in severe pain, with horribly low energy, and neurological problems. The disease thrives in a low temperature, low oxygen environment, and that is the environment it creates within the body.

Heat can be helpful for treating Lyme Disease because the bacteria appears to prefer a low body temperature and is vulnerable to high heat. There are many different sources of heat that can be used to treat this condition. Heat can also be helpful for people with fibromyalgia and CFS who may actually have undiagnosed cases of Lyme Disease.

YUP.....my DR. is right. I NEED heat.

I need another heatwave like what we had over the summer.....that was GREAT.

AndreaB Contributor

That's a bummer about your appointment Rachel. :(

I look forward to hearing about everyone's baby steps to better health.

I'm going to have to steal myself to not go out and get some ice cream. Avoiding dairy and chocolate. Seems I'm the only one who can tolerate it......so out it goes. :(

CarlaB Enthusiast

Claire, I tried using a digital thermometer, but as you said it wasn't as accurate. I need to detect the four tenths of a degree change in temp., and I couldn't do it with a basal since my temps were so irregular. In the people I taught NFP to there wasn't this problem, but for my own crazy temps, I needed the more accurate thermometer.

Rachel, glad you liked your "hot cream"!!

As far as water goes, I've always drank mine room temperature. It's just too cold with ice!! I like ice in ice tea, but I seldom drink it and it has to be really hot out for me to. I even prefer room temperature red wine to cold white wine ... not that I drink much of either anymore.

georgie Enthusiast

Hypothyroid can make you have low temps. You had your Thyroid nuked and then have replaced it with 1/3 of what a healthy thyroid produces. That won't be helping you get well. You need a healthy thyroid to fight infections.

Rachel--24 Collaborator
Hypothyroid can make you have low temps. You had your Thyroid nuked and then have replaced it with 1/3 of what a healthy thyroid produces. That won't be helping you get well. You need a healthy thyroid to fight infections.

Georgie....I know I've told you this several times already but I had HYPERTHYROID. Hyperthyroid is an overactive thyroid.....in this case a person gets OVERHEATED. I was always warm and I'm sure this was due to my overactive thyroid gland.

All of a sudden....even though I had HYPERTHYROID...I was FREEZING....I had CHILLS. I was NOT able to get warm and I was SICK. How many people do you know with HYPERTHYROID walk around with chills and are freezing??

The point I'm trying to make....once again...is that I was sick BEFORE I nuked my thyroid and became HYPO. I was cold BEFORE I became Hypo. I nuked my thyroid out of desperation because I was ALREADY sick and I thought it *might* make me better. My thyroid was NOT the reason I was sick though...so the RAI did nothing to improve my symptoms. There was NO change. My thyroid was NOT the cause of my illness....period.

I think I know what my CORRECT dose of medication is.....especially after 2 years of experimentation and having labs done every 4 weeks.

Once again I will tell you that I'm not gonna ignore my body, my labs and my experience with med adjustments because you *think* I should be on a higher dose. I KNOW how much thyroid replacement I need to be on....I told you I've went HYPER on meds more than once....the labs PROVED it.

The advice you give is dangerous....you cant possibly know what dose is correct for anyone but yourself.

Also....did it ever occur to you that some of my thyroid may have survived RAI treatment??? This is not uncommon and part of my thyroid could still be producing hormones....which *may* be why I dont need to take the HUGE amounts of Armour that you *think* I should be taking.

I think you should familiarize yourself with Graves Disease and RAI before you start *telling* people how much meds they should be on...or advising people to take 3 or 4 times the amount of meds they are currently on...especially when they have NORMAL labs.

I'm telling you....if I took those doses....I would be VERY hyper....which would NOT be good for my heart. You dont know my body and you dont know what dose of thyroid is correct for me.

Please stop handing out potentially harmful advice.

Fiddle-Faddle Community Regular
Yeah...I'm drinking hot water. I just microwave my regular bottled water and drink it hot. :)

Hi, Rachel, quick drive-by!! Just wanted to make sure you are not popping the plastic bottle in the microwave--you're not, are you? Plastic IS supposed to be "microwav-safe," but that just means you won't destroy the bottle or the microwave. The plastic decomposes slightly, and chemicals leach into your food or liquid, so ALWAYS use china!

Georgie, nice to see you! You are fairly recent here, so you may have missed that Rachel has been doing very thorough research on her condition(s) for years now, and knows more about celiac, Lyme, mercury, and thyroid than any person I know! I know you want to get the word about about hypothyroidism, but on this thread, you're preaching to the choir!

some of my thyroid may have survived RAI treatment??? This is not uncommon and part of my thyroid could still be producing

My mother had a thyroidectomy 40 years ago. They were supposed to take out the whole thing, but apparently, they left a tiny corner. At least, that's what they assumed, because her TSH and T4 were NORMAL for the next 35 years. :blink:

miamia Rookie

Rachel-

Ok yesturday I was out of it but I wanted to say It sounds to me like your appt. went really well. I know this is not your faviorite doctor but I really liked how he didn;t dismiss lyme or coinfections and seems to be treating you as you and not just a patient- and working with your sensitivities. I think its good your mom went with you - it seems like sometimes no matter how much you explain to someone that certain things are because of the illness and not becuase of you they don't get it until a doc says it. (Idon't know if this is the case with your mom) I know my mom gets it and that helps me alot but the other day I was with my sister and she didn';t know how to react to me - I was having a weird mood fluctuation she first just kind of ignored me - which I know was just her trying to give me space but when I told her to stop it was upsetting me she started laughing and it hurt me really bad - she laughed at me like I was crazy- I know she didn't mean to make me feeel bad I am just so super sensitive right now. I already feel crazy I don't need anyone confirming it.

Julie-

I am glad you have been posting more- I missed you. I hope you are feeling alright- how are you feeling? What is the status of your testing?

Andrea-

no dairy for me either- so No "Hot" or "ice" cream. I have soy allergies but not nearly as bad as dairy and everyonce in a while I cheat with this soy ice cream. Its weird I have tried all of them and finally found one that does not seem to cause a reaction. I think becasue most of them have xanthium gum and all this other cr*p and it dosen't have any of that.

Carla-

you are patient my dear- I would be ripping my hair out if I didn't have my results back yet. I am ripping my hair out actually waiting for my results and I had my testing done after you. If you have acsess to a fax machine sometimes they will fax you the results and this saves a few days. (I know I'm crazy)

Susan-

It has been quieter on the site I think becasue we are all waiting for results or something maybe the holidays will bring lots of crazy posts and weird stories.

Laura-

By the way I posted yesturday about how I understand your feeling about the posting our pictures but I forgot to say that you look beautiful in all your pictures and I know I don't know what you looked like before and that is more of the issue than anything else- not looking like your self but you do look beautiful.

Miamia

AndreaB Contributor

Morning all!

Miamia,

Glad you are feeling better today. Sorry yesterday wasn't good for you. I must say, I don't know how my mom would be if I were really ill. If she understood everything she'd more than likely be fine, otherwise she'd be more like Rachel's mom.

We are waiting for your results as well....

Rachel--24 Collaborator
My mother had a thyroidectomy 40 years ago. They were supposed to take out the whole thing, but apparently, they left a tiny corner. At least, that's what they assumed, because her TSH and T4 were NORMAL for the next 35 years. :blink:

Alison...it sounds strange but it actually happens. :blink:

I guess your mom's thyroid just said "You arent taking ME down!" :lol:

Whatever was left of it must have just kept pumping out the hormones.

Lots of people with Graves have had to actually repeat the RAI 2 or 3 times because it didnt get the job done and they were still hyper. They gave me a big dose the first time and it worked....I went Hypo about a month later.

I've often thought that my thyroid may still be functioning but not enough to keep me at normal levels on its own.

I had asked my Endocrinologist about this a long time ago. He said it didnt matter if part of my thyroid was still functioning. The important thing was that it wasnt making me hyper anymore and that my levels were normal.

I was VERY upset after going through all of this and having no improvement in my health or my symptoms.

At that time my Endo. swore to me that my problem was not my thyroid. He said after 30 years of treating people with thyroid disease he was certain my symptoms were caused by something else. He said "Whatever it is.....none of your Dr.'s have been smart enough to figure it out yet."

I didnt want to believe him at the time and I drove him crazy for 2 years. He let me play with my meds and my doses because I just wouldnt give up...kept badgering him...thinking that if I found the *perfect* dose I'd get better. In the end he was right....and I was wrong.

About the bottled water. I pour it into a mug and microwave it in the mug. I think if I microwaved the water while it was still in the plastic bottle the chemicals in the plastic would leach out and the water would make me sick. It happens when I leave bottled water in my car and it gets hot from the sun....the chemicals get into the water and I'll get a reaction. :(

I always thought that the plastic bottle would melt if it went into the microwave?? Wouldnt it?? :unsure:

My mom would KILL me if I got melted plastic all over her microwave. :lol:

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      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
      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
      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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