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Omg...i Might Be On To Something


Rachel--24

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dlp252 Apprentice

:o OMG OMG OMG OMG !!! :o

:lol:

I slept! I slept all night!! I think I slept so well I didn't move!!! I woke up in the same position that I went to sleep. I don't remember waking up at all, not even a little. Girls (and guys), that's 7.5 hours!!! Now, I don't know if that's from the bugs being expelled, the DMPS treatment or the prayer I said before I went to bed, but whatever, I'll take it. :PB) I also dropped almost two pounds since yesterday! I think I can safely say that was due to my morning cleanout, lol! :lol:

I am interested in hearing that all of you have the ringing...(tinnitus?). I don't but my hubby does; I don't think I'd convince him to consider if he has lyme though, LOL.

It could be a symptom of metals too. I get ringing once in awhile. I don't know if occasionaly is normal or not.

Yeah, I was just thinking last night that it sucks to have so many major issues because I honestly don't know which thing is causing which symptoms, lol. I know I have metals issues, I just don't know how bad they are. My ART testing showed that Lyme was the major stressor on my body but I think the symptoms are coming from the metals and mold.

Hey Donna! Do you want to come up and do some pest relocation duties? :D:P

OMGOSH, a full night's sleep and the prospect of pest relocation duties! It's too much to think about!!! :lol: :lol: I was just thinking it's been a long time since I've had any serious relocation efforts! :lol:

I don't have much input on the meds other than it sure could be stirring things up, both bugs and metals. Maybe you should get some more of the pectin and use it?

I actually ordered some last week...it hasn't come yet. I decided to take chlorella again too so took some last night. I'm getting a massage today, so think I'll also do an epsom salt bath.


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miamia Rookie

ohhhhhhhhh you guys i am having a really tough time .the meds i was taking that were helping me so much seem to not be doing the trick and i just have no idea what to do. Anything i eat makes me absolutley miserable I have beyond no appetite. God I just really dont know what to do. Sorry for the rant

CarlaB Enthusiast
I am interested in hearing that all of you have the ringing...(tinnitus?). I don't but my hubby does; I don't think I'd convince him to consider if he has lyme though, LOL.

Sherry

It can be caused by damage ... did he attend a lot of concerts when he was younger? You know that all these stupid kids that go around in the "booming" cars are going to have ringing for the rest of their lives!!!

Mine is not because of metals ..... my metals are low to gone.

I slept! I slept all night!!

YAY! I'm betting on the chelation. I'm telling you, there was a night and day difference back when I was chelating between my four days on and the three days off. I couldn't wait to get back on, and it wasn't because I liked using the suppositories!!!

ohhhhhhhhh you guys i am having a really tough time .the meds i was taking that were helping me so much seem to not be doing the trick and i just have no idea what to do. Anything i eat makes me absolutley miserable I have beyond no appetite. God I just really dont know what to do. Sorry for the rant

I don't know mia, I'm sorry. Do you want my LLMD's phone number? Maybe he could come up with something new for you.

AndreaB Contributor
We had snow in lovely colorado yesterday, so you all enjoy your 70 degree weather.

:o:huh::o

Does Colorado not know that it's almost summer!?!?

We've been unseasonably cold this spring as well, but we've been around the 60's recently so I'm hoping we're getting back to normal.

I slept! I slept all night!! I think I slept so well I didn't move!!!

Now that is exciting!!! :D :D :D

My ART testing showed that Lyme was the major stressor on my body but I think the symptoms are coming from the metals and mold.

That would make sense to me. Any plans on carpet removal this summer/fall?

OMGOSH, a full night's sleep and the prospect of pest relocation duties! It's too much to think about!!! :lol: :lol: I was just thinking it's been a long time since I've had any serious relocation efforts! :lol:

We've got carpenter ants so you probably don't want to deal with ants that big. :huh: Exterminator is coming Tuesday morning, along with the landlord to pay for it. We've got the holes sealed that we found them coming through.....we'll be going through the weekend looking for more. The kids weren't too thrilled with the idea of going to bed with ants in the house so I'm glad we got them holed up for the night anyway.

Now I'm a little concerned about the "dust" they put spray in between the walls and if it will have any negative effects on us. I know one of the kids already had an LED that included insecticides.

ohhhhhhhhh you guys i am having a really tough time .the meds i was taking that were helping me so much seem to not be doing the trick and i just have no idea what to do. Anything i eat makes me absolutley miserable I have beyond no appetite. God I just really dont know what to do. Sorry for the rant

Mia, I'm sorry. Have you done muscle testing lately? Did you ever find an ART practitioner, or just a kines(how do you spell this word?).

lynne1978 Rookie
ohhhhhhhhh you guys i am having a really tough time .the meds i was taking that were helping me so much seem to not be doing the trick and i just have no idea what to do. Anything i eat makes me absolutley miserable I have beyond no appetite. God I just really dont know what to do. Sorry for the rant

Hiya I have been reading this thread for a while and i've gotten some really good ideas from it. I feel exactlythe same as you a lot of the time, I am frightened to eat cos I feel awful. I have started not to say anything to people now as i am sure they think i'm making it up, and I just feel so bad and oftern sit and cry, thinking there must be something really wrong with me because people shouldnt feel ill all teh time, and food is meant to fuel you, not make you sick! I think I am going to do the caveman diet, and have been reading the 'Eat right for your blood type' diet book, which seems to have a few good pointers too. I am also going to see someone about alergies, but I am not sure which way to turn for that as yet. It is really depressing feeling like c**P all the time isnt it!

dlp252 Apprentice
ohhhhhhhhh you guys i am having a really tough time .the meds i was taking that were helping me so much seem to not be doing the trick and i just have no idea what to do. Anything i eat makes me absolutley miserable I have beyond no appetite. God I just really dont know what to do. Sorry for the rant

Mia, I am soooo sorry!

YAY! I'm betting on the chelation. I'm telling you, there was a night and day difference back when I was chelating between my four days on and the three days off. I couldn't wait to get back on, and it wasn't because I liked using the suppositories!!!

Wow, wouldn't that be great if chelating helped me sleep?! Wow. My doctor mentioned something about a cream...I'm hoping I can use that instead of IVs or suppositories. Suppositories are right up there with enemas in my book. :lol: I can't wait to talk to him! I definitely had no ill effects except maybe a little bit of a headache, but not sure that's from the chelation, but I've had it since yesterday afternoon. It's minor though.

Does Colorado not know that it's almost summer!?!?

...

That would make sense to me. Any plans on carpet removal this summer/fall?

...

Now I'm a little concerned about the "dust" they put spray in between the walls and if it will have any negative effects on us. I know one of the kids already had an LED that included insecticides.

It is SOOOO cold here today!!! It's amazing, lol. I had to wear my winter coat out shopping!

Yeah, some of my "problems" may be related to previous relocation attemps wherein I'd use a can of spray on the little pesty things. :ph34r:

Hiya I have been reading this thread for a while and i've gotten some really good ideas from it. I feel exactlythe same as you a lot of the time, I am frightened to eat cos I feel awful. I have started not to say anything to people now as i am sure they think i'm making it up, and I just feel so bad and oftern sit and cry, thinking there must be something really wrong with me because people shouldnt feel ill all teh time, and food is meant to fuel you, not make you sick! I think I am going to do the caveman diet, and have been reading the 'Eat right for your blood type' diet book, which seems to have a few good pointers too. I am also going to see someone about alergies, but I am not sure which way to turn for that as yet. It is really depressing feeling like c**P all the time isnt it!

Lynne you should post more often! Sorry you are having problems. Some of us have seen improvement in the varieties of food we can eat...I'm hoping the same for you and for Miamia!

nora-n Rookie

I have tinnitus too but i have always connected it to hypothyridism. It started after my episode with mononucleosis. (both hypo and tinnitus)

I eat mostly according to the blood type diet, type 0 and it means no wheat or milk. I react very muc to gluten and milk. Now gluten-free bread mixes have all this potato starch and corn starch we are not supposed to have either and I avoid gluten-free bread too, but I have some gluten-free bread a few times a month.

I usually just make more dinner and save some for lunch the next day.


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Rachel--24 Collaborator

Donna,

Good news about the challenge test...I'm glad it went well. :)

Not sure if the DMPS was the reason you slept so well but I guess you'll be able to tell if you have more IV's. I'm assuming you had the smallest dose (1cc?).....so I'm not sure it could make a big impact but you never know! I definately think your sleep problems could be caused by the metals. Hmmmm....maybe you have high copper....copper can cause insomnia the same as mercury....and DMPS pulls out copper first.

That would be very cool if the treatments allow you to put these sleepless nights behind you. WooHoo! :)

I dont think that Dr. S. would suggest suppositories BUT..if you really wanted I'm sure he'd be ok with it. LOL....I'm pretty sure this would be last on your list though. :lol:

He mostly uses DMPS.....he does use DMSA....or other stuff like NDF. If you need the chelation he'll probably let you choose the method. I think he likes Transdermal DMPS (cream) because its slower and more gentle than IV. For me it was worse because it contains glutathione.

They all have their pros and cons....oral, IV or transdermal...its hard to know which chelator (or method of transmission) will be most effective..I just picked what I thought would work out best for me. You can always switch if something is not working for you.

I still have to take my porphyrin test...I've had the kit over 2 weeks now and still havent done it! I'm totally lagging on this but hopefully if I get it done on Tuesday I'll be able to get the results back before my phone consult with Dr. Amy.

I cant believe I havent done this yet...yeah....apparantly I've lost focus again. :ph34r:

Mia,

Sorry to hear that you're not feeling well. :(

Hopefully your Dr.'s can make some changes that will work better for you. I think if you can get ART it would be very helpful. I'll be thinking of you.

Rachel--24 Collaborator
Hiya I have been reading this thread for a while and i've gotten some really good ideas from it. I feel exactlythe same as you a lot of the time, I am frightened to eat cos I feel awful. I have started not to say anything to people now as i am sure they think i'm making it up, and I just feel so bad and oftern sit and cry, thinking there must be something really wrong with me because people shouldnt feel ill all teh time, and food is meant to fuel you, not make you sick!

Hi Lynne :)

Welcome to our monster thread. :P

Most of us here can relate to all of this. I agree that its not normal to have so many problems with foods. I did used to sit and cry (pretty much everyday) during the first couple years when I really wasnt getting any answers....or feeling any better. I'm doing MUCH better these days....hang in there...once you figure out whats causing you to feel bad things can definately improve. :)

Rachel--24 Collaborator

Heres my update. :)

I have nothing new to report as far as testing (cuz I've been neglecting this), no new treatments....no appts till my phone consult on the 9th.

Only new thing is that I went through my trial size mineral supplements and now I've ordered everything since I didnt have ANY problems with this brand! YAY....this is like a mini miracle. :)

Thank God there are some companies that are totally hypoallergenic and pure. It doesnt seem like I'll need to go back to the dreaded mineral IV's. :D

I just hope they are being absorbed.

I'm still doing fun things that I've missed out on the past 5 years. Last night I went to Great America (amusement park). It was fun....the only bad part was that it was COLD. :angry:

Where did our 100 degree weather go?? It was actually probably not as cold as I *thought* it was....because most people were in shorts...but STILL...it was nowhere near what we were having last week. I would have preferred some serious heat. :D

I only went on a couple rides....none of the big ones. I'm not really into stuff that spins you around...they make me sick...even before all of these health issues.

I couldnt believe the freakin admission though...OMG...$65 to get in...AND I couldnt even bring my food. :angry:

I knew I wouldnt be able to bring my stuff in without a medical note ( I need to get one of these!) but I figured I could go out to my car if I wanted....BUT NO....they wouldnt even allow people to leave and re-enter. :angry:

Anyways....it all worked out. I had no choice but to eat cheese pizza, pretzel and nachos. :D

Amazingly...I only got some very minor symptoms from the pizza (i ate 2 slices) and the pretzel and nachos didnt affect me. :)

lynne1978 Rookie

Hi thanks!

Its really good to know I am not crazy and that there are other people who dont feel 100% every day! Hopefuly i can figure out what is making me feel so bad!

AndreaB Contributor

Rachel,

So good to hear you're able to go out and have a good time. :D

Now I have another appointment to look forward to......the 9th for you and the 5th for Donna. :)

confusedks Enthusiast

Hey Carla, I sent you a text. I'm okay...barely. LOL! I hit my head at 2 in the morning, and my room started spinning, and I got a horrible headache. Long story short, I think I'm fine. My head still hurts, but I'm not dead. :D

dlp252 Apprentice

Ahhhh, massage! Wonderful invention! :P

So she's working on me and asks if I want my stomach done. Yeah, I think it's probably a good idea, but I didn't say anything about why. So she's moving stuff around and says "oh"...so I say, "is that my liver?" She confirms and I say, yeah it's probably a little overburdened right now. :) Then she hits another spot and says "oh, your stomach too". I hadn't mentioned my stomach but then told her about Thursday night. Pretty amazing, lol Anyway, had a great massage, a nice long epsom/baking soda bath and am now about to chow down on some chicken. Life is good! :lol:

I definately think your sleep problems could be caused by the metals. Hmmmm....maybe you have high copper....copper can cause insomnia the same as mercury....and DMPS pulls out copper first.

I just looked at my hair elements and copper was above the 50th percentile...he had it highlighted on my sheet, but we've never discussed it. I'll ask about it when I see him--I also want to ask about the RBC too.

The metals would make sense for me...the timing is about right for when it all started. If chelating the metals would allow my neurotransmitters to get back to more normal levels I'd bet a LOT of things would clear up for me, lol.

I'm pretty sure this would be last on your list though. :lol:

Ohhh sooooo looooow on that list. :lol:

He mostly uses DMPS.....he does use DMSA....or other stuff like NDF. If you need the chelation he'll probably let you choose the method. I think he likes Transdermal DMPS (cream) because its slower and more gentle than IV. For me it was worse because it contains glutathione.

They all have their pros and cons....oral, IV or transdermal...its hard to know which chelator (or method of transmission) will be most effective..I just picked what I thought would work out best for me. You can always switch if something is not working for you.

I do really well with glutathione (at least the liposomal oral kind)...when Anna tested me DMPS was actually the best. I think he's worried about my gut more than anything so he'll probably want IV or cream.

I cant believe I havent done this yet...yeah....apparantly I've lost focus again. :ph34r:

:rolleyes::rolleyes::lol:

Heres my update. :)

Cool about the minerals!!!!

I LOVE Great America but haven't been there in ages. My traveling friend and I used to get season passes and go many times during the summers. Yeah, I'm a huge kid at heart and I LOVE the big roller coasters...the bigger and spinnier the better. :P

lynne1978 Rookie

Hi all just wondering what people think the best place to get tested for allergies etc? I would like to get some tests but not sure which direction to go. Any opinions/experiences? Thanks!

CarlaB Enthusiast
Hey Carla, I sent you a text. I'm okay...barely. LOL! I hit my head at 2 in the morning, and my room started spinning, and I got a horrible headache. Long story short, I think I'm fine. My head still hurts, but I'm not dead. :D

I got your text. Joy was concerned about you. :) Haven't you hit your head on your nightstand before?

Welcome Lynne!

confusedks Enthusiast
I got your text. Joy was concerned about you. :) Haven't you hit your head on your nightstand before?

I don't think I've hit my nightstand before. I might, but I don't remember! LOL! :lol:

mftnchn Explorer

Donna, YAY on sleeping! A big clue maybe!!!! Keep working on that detox....wanna get those metals out and the bugs too.

Lynne, welcome! Can you tell us more about what you have tried and what testing you have had? The allergies might be secondary to other things, maybe we could make some suggestions. In terms of allergy testing, you can do a blood test, skin testing or provocative testing that is a combo of skin testing and drops in your mouth. You can also do more alternative testing like ART, BIOSET or various other varieties. You can also do elimination diets to determine allergies.

If it is true food allergies, I think elimination diets are the most accurate by far if you are careful when you do them. Also the least expensive, LOL! Blood testing is the least accurate as I understand. Plus even if antibiodies are picked up there is no strong connection with severity and discomfort of symptoms.

I recently did ART on foods, and am following those recommendations. I think it was helpful, but I know I would not get better just looking at foods. My LLMD once told me, just give 20% of your attention to foods. That was before we found out I was celiac--so of course being gluten-free and also SF is a high priority now. I have reintroduced small amounts of dairy.

Sherry

mftnchn Explorer

Kassandra, glad you are ok.

Rachel, sounds like you had fun, and glad the foods are not bothering you too much.

Andrea, :o on the ants! I'd be concerned about the pesticide, but you also have to have the ants dealt with. Can you call Dr. E. about some prevention? Increase your chlorella, etc.?

Mia hope there is relief soon, is there a clue there that the meds stopped working?

Julie, I know you might not be able to read, but am thinking of you and hoping the outbreak is easing.

Jin, are you out there?

Sherry

AndreaB Contributor
I LOVE Great America but haven't been there in ages. My traveling friend and I used to get season passes and go many times during the summers. Yeah, I'm a huge kid at heart and I LOVE the big roller coasters...the bigger and spinnier the better. :P

I used to love all kinds of rollercoasters too. It's been many, many years since I've been on one though.

Kassandra, glad you are ok.

Ditto. :)

Andrea, :o on the ants! I'd be concerned about the pesticide, but you also have to have the ants dealt with. Can you call Dr. E. about some prevention? Increase your chlorella, etc.?

She's usually off on Tuesdays. I'll pop another email to her. I've got one I sent on Tuesday about something else so she may not be around. She's usually quicker on replying.

lynne1978 Rookie

Hi, thanks for your reply, i have had accupuncture for some things, which helped for a little while, I did have something a few years ago for allergy where they get you to hold a metal stick thing and pots of substances and measure some energy (dont know what it was called) which said I should avoid Aspartame, MSG and dairy. I had a blood test sent away years ago which said to avoid dairy milk, and I was told by a reflexologist/palmist I should avoid chocolate and wheat! (not sure how he knew that tho!) SO apparently I should be off wheat/dairy/chocolate/MSG/aspartame/milk. Phew! But something is still upseting me, when I go back to basics I am ok and start to feel good but then I start to feel ill again when I introduce anything that is not remotely plain. It very annoying, because sometimes I would like to have something a bit different! I had two days off things and yesterday I started to feel a bit better, my head cleared a bit, and I actually felt like doing the hoovering and laundry this morning!!!!! WOW! now thats a total change, but i wish I knew what it was that was actually affecting me so badly!

mftnchn Explorer

So what does basic and plain diet mean, Lynne?

Guest LittleMissAllergy

TMI alert:

ecoffee question.

So I finally figured it out last night. I got a regular fleet "extra" bottle (holds like 8 oz. of liquid) and dumped it out and filled it with warm caffeine free instant coffee (next time im asking my mom for caffeinated). I accidentally squeezed the air out of the tip though before I used it so it didnt function properly so I only got about half in. I still held the 4 oz though, and it seemed to work a *little* and it got out a tiny bit of what seemed like impacted stool. Okay, that's enough for the yucky details...I'll get to my question. I had HORRIBLE nausea afterward, for HOURS into the night. I did it around 9:00 and I felt like vomiting until 3:00 in the morning. Is this normal?

I also had another question. My doctor said that I can "pulse" the Biaxin because I was herxing so badly, so I did. I started taking one on one day and two on another, and I started to come out of the herx and feel okay! But then I took one dose two days in a row, then ramped back up to two, and then yesterday rolled around and I was sicker than i'd ever been in my life. I'm so terrified...I didn't even get to take any Biaxin. That's what prompted doing the ecoffee. I just didn't know what to do. I wanted to go to the ER, I felt THAT horrible, but my mom told me no. I couldn't breathe, my heart was palpitating, my right side AND my left side hurt in my ribcage (and it still does this morning!) and worst of all- I had this really scary neck/jaw pain and pressure, and pulsating and pain in my lymph and thyroid area that made me feel like I was going to pass out.

Anyone ever experience ANY of that? Why did it happen if I didn't take any Biaxin? Do I take Biaxin today? I know you're not all doctors but this is such a terrifying position to be in...not being able to contact my LLMD until Tuesday...and the conventional doctors that I have don't even know what's going on, they wouldn't know what to do with me.

Sorry to post all of that here and totally dump this on you guys...but I've never been so sick, or scared.

I hope you all are well...and doing better than I am at the moment.

lynne1978 Rookie
So what does basic and plain diet mean, Lynne?

when i'm feeling ok, pretty much my diet consists of chicken, rice, rice pasta, cucumber, bananas, lettuce, tuna, rice cakes, water, sometimes a little soya in tea, cocacola, I was feeling really good this morning, I just had some sainsburys freefrom gluten free sausages with potato croquettes and eggs (the potato things and eggs seem ok with usually) and now getting cracking headache and feeling really irritable and angry with everything!!!

dlp252 Apprentice
I did have something a few years ago for allergy where they get you to hold a metal stick thing and pots of substances and measure some energy (dont know what it was called) which said I should avoid Aspartame, MSG and dairy.

Sounds like BioSET. That was pretty accurate for me on the foods. I tried doing an elimination diet, but couldn't finish because I never got to a point where I wasn't reacting, so I had the BioSET done which gave me a starting point. Turns out that the based foods on the elimination diet were mostly foods that showed up in BioSET as reactive. Once I cut those out, I had my base diet, then I started introducing stuff in a little at a time using the BioSET results as a guideline for which foods to add when.

ecoffee question.

Can't help you with this one, but I don't remember anyone here saying they felt nauseated...

when i'm feeling ok, pretty much my diet consists of chicken, rice, rice pasta, cucumber, bananas, lettuce, tuna, rice cakes, water, sometimes a little soya in tea, cocacola, I was feeling really good this morning, I just had some sainsburys freefrom gluten free sausages with potato croquettes and eggs (the potato things and eggs seem ok with usually) and now getting cracking headache and feeling really irritable and angry with everything!!!

The two things that really stand out for me are the soya and the sausages. The soya in general just isn't good, and the sausages may contain spices and even though they are gluten free, the spices can still bother. I react to some spice, but not all. The other thing is potato croquettes...how are they made...does it have dairy in it? That could be another issue. The other thing you might look into is grains in general...I have a hard time with most grains, but I can do a little bit of rice if I don't have too much.

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      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
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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