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Omg...i Might Be On To Something

Rachel--24

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Rachel--24 Collaborator
Rachel--24
Posted
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Driving by again.....havent had dinner yet....its cooking. :)

I ate some bad things but only in small amounts. I tested out my pumpkin pie....its really good...no noticeable reaction to it so far. I doubt I could get away with eating the whole pie though.

I ate one piece of cheese. Cheese gives me migraines so hopefully I'm ok with just the one piece.

I tried one potato chip and reacted right away. <_<

I snacked on my regular everyday popcorn and then decided to dip into the guacomole...OMG....the dip was sooo good. I've had alot of the dip....checked out the ingredients and it hardly had any. Nothing really bad...it came from Trader Joes.

My mom taught me how to make mashed potatoes. I have my own....made from my everyday potatoes. Somehow having them "mashed" with some milk totally makes them taste different....creamy and yummy. :)

I'm hiding out right now. My Bro is in the other room...playing guitar and "singing". :blink:

As our lovely Susan would say....HOLD ME....I'M SCARED! :ph34r:

So far I've only reacted to one potato chip and my brothers got some gel or something in his hair. :rolleyes:

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Rachel--24 Collaborator
Rachel--24
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Sheeesh...I just heard my brother's wife ask my mom "Can Rachel can sing???" My Mom said..."No...Rachel has a horrible voice!."

I'm like "Excuse me???" :o

My mom says...."Oh apparantly her hearing is OK."

Sheeesh. :rolleyes:

jerseyangel Proficient
jerseyangel
Posted
Sheeesh...I just heard my brother's wife ask my mom "Can Rachel can sing???" My Mom said..."No...Rachel has a horrible voice!."

Hee Hee :D

AndreaB Contributor
AndreaB
Posted

Rachel,

Glad that the food is going well overall so far. :)

Your brother.... :lol::lol:

miamia Rookie
miamia
Posted

So glad to hear everyone seems to have had pretty good days- minus bad singing and a bad chip (singular)- but congrats rachel on just having 1 and than stopping- you didn't rachel the chips -nice job!!!!

My day was actually pretty nice. It started off not so good becasue I wasen't feeling great but it turned out really nice and realxing. I went to my sisters - niece, nephew, mom dad gradma and we all just opened gifts I decided instead of getting stressed about food to just eat what I would normally eat and that worked out really well- so thank god no major reactions. Later we went to a friends house - everyone was drinking- this made me a little sad- I miss the drink!!! But I was too tired a this point to really care. Although I am happy it was a nice day I am more relieved than anything that it is over and I made it through without any really horrible catostrophes. One more big holiday to go!!

dlp252 Apprentice
dlp252
Posted

Wow, great to hear everyone made it through the weekend relatively unscathed, lol.

I'm back at work this morning, although wishing I stayed home one more day...they have a huge brief (never got the connection of calling a document that is 100 pages a brief, lol) that they need to file on Thursday, so I'll be busy today and tomorrow. If I start to feel really bad, I'll just have to tell them I can't work on it, and then leave. In fact I just sent an email saying I was still not completely well.

After all that, I actually AM feeling better. The coughing has calmed down, and the congestion is slowly going away. I still can't hear out of my right ear though, and all the meds are doing some interesting things to my digestive system, lol.

I went back to Whole Foods to find that larger pumpkin pie (with no dairy/gluten/soy), but it was gone. I ended up Racheling the stupid pumpkin pie with the dairy in it, so am paying for that a bit this morning. Fortunately I only ate the crust, which for some reason just tasted sooooo very good, but I know that crust has butter, lol.

It was a Sunday, my cousin and her family did stop by, but they didn't stay long, so mainly it was just my mom, aunt and myself. I was really worn out though, so left as soon as my cousin did. Yesterday I felt much better and it was just my mom, aunt and myself again.

AndreaB Contributor
AndreaB
Posted

Donna,

I'm glad to read that you are feeling better aside from your dairy mini excursion. I hope that doesn't leave you down too much.

Miamia,

Hoping you will post about your appointment. :)

We had a quiet day yesterday with just us and leftovers (aside from making pie). I didn't use evap. milk. Used coconut milk and water (should have cut down on the water). I did cut the water by 2 oz. but that wasn't enough. Tasted good but I overcooked the snickerdoodle crust (enjoy life) trying to get the rest of it to set up. Will have to experiment with it. I also made it egg free for Seth. He wasn't super impressed but he did have a few bites.

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Mango04 Enthusiast
Mango04
Posted
Sheeesh...I just heard my brother's wife ask my mom "Can Rachel can sing???" My Mom said..."No...Rachel has a horrible voice!."

I'm like "Excuse me???" :o

My mom says...."Oh apparantly her hearing is OK."

Sheeesh. :rolleyes:

LOL my mom has often said the exact some thing about me (in my case she's correct :rolleyes: )

Anyway, just wanted to drive-by/pop-in and say I hope everyone had a wonderful Christmas!

:) :) :)

Anonymousgurl Contributor
Anonymousgurl
Posted

Oh my goodness, this board is HUGE. haha...well I was ever so kindly invited by Carla to join because she informed me that lyme disease is a popular topic on this board. But anywayyyys...it looks like everyone is talking about the holidays right now...I hope everyone is having a good time, it sure sounds like you are. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
So glad to hear everyone seems to have had pretty good days- minus bad singing and a bad chip (singular)- but congrats rachel on just having 1 and than stopping- you didn't rachel the chips -nice job!!!!

Yeah...I didnt Rachel the chips!! :D

I'm happy that everyone had a nice holiday! I did well with the food....nothing bad happened! :o I even ate most of my pumpkin pie....not all at once though. There is actually some left still! Will wonders never cease.... :lol:

Donna.....that was one HECK of a good pie! I dont know if its just cause I havent had any in so long.....but MAN....I think that little gluten-free $10 pie was the BEST I've ever had!! :D

Of course it would have been even better with cool whip. I wonder if I can just bring a tub of cool whip to Bioset and have the Voo-Doo lady "de-sensitize" me. :lol::lol:

I think I might have to write to Whole Foods to MAKE SURE that they always have that pie available during the holidays....or even all year would be great! B)

I cant believe I didnt get any bad reactions though....maybe the Bioset is helping?? As far as stuff in foods....I've only been treated for molds and phenolics so far. The phenolics panel was pretty big though....alot of the chemical type stuff in foods. Who knows...maybe it helped some. :huh:

I'm looking forward to getting into foods next week! WOO-HOO!

I miss eggs. My mom was making egg sandwiches this morning. Holy Cow....I miss those!! I LOVE eggs like that...english muffins are the best. Do they make any gluten-free english muffins yet??? :unsure:

Emotionally....I didnt do too well through the holiday. :(

Lots of tears and lonliness and just missing life the way it used to be. I didnt go to work yesterday or today because the sadness brought me down and I didnt feel good. :(

I had those balls of stress in my stomach again but its better now...I'm going to work tomorrow.

Its crazy cause I do all this stuff to keep myself feeling good. Avoid all these foods, dont drink alcohol, avoid chemicals....then I keep someone in my life who is more toxic to me than all that stuff put together. :blink:

I decided not to do that to myself anymore...No more toxic people in my life. This is the same person who got me in this mess to begin with....causing me so much stress. Its my New Years resolution to just focus on me....and getting better. :)

I have new pics from Xmas...I cant put one up until I get home on the weekend. :)

Donna, are you feeling better??

Miamia, Did you get test results back yesterday??

Mango, I hope you had a wonderful Xmas as well!

How is everyone else doing?? Its been pretty quiet here lately...tumbleweeds for miles. :unsure:

Carla, I started on my Cats Claw yesterday. One drop in 4 ounces of water. So far no herxing or anything. I read that its recommended to stay one drop below herx level. So if you start herxing when you increase...you should go down one drop.

Which brand are you taking? I'm taking Prima Una De Gato by Allergy Research Group.

My next appt. with the Dr. is on the 8th. About 3 more weeks and you'll be going to NY!!

Oh my goodness, this board is HUGE. haha...well I was ever so kindly invited by Carla to join because she informed me that lyme disease is a popular topic on this board. But anywayyyys...it looks like everyone is talking about the holidays right now...I hope everyone is having a good time, it sure sounds like you are.

Peace....Welcome!!

We talk about *anything* here but Lyme is a big topic. You can talk about Lyme....or anything else for that matter. ;)

AndreaB Contributor
AndreaB
Posted
well I was ever so kindly invited by Carla to join because she informed me that lyme disease is a popular topic on this board.

Welcome to the thread Peacenlove. :)

Quite a few on this thread have been diagnosed or suspect lyme disease but not everyone. This thread has mainly turned into a place to bounce around ideas for people who haven't gotten completely better on the gluten free diet.

It's been quiet lately, but we hope you'll check in and join whatever discussion you feel comfortable with, or ask questions yourself.

Thanks Carla. :)

AndreaB Contributor
AndreaB
Posted
I'm happy that everyone had a nice holiday! I did well with the food....nothing bad happened! :o I even ate most of my pumpkin pie....not all at once though. There is actually some left still! Will wonders never cease.... :lol:

I cant believe I didnt get any bad reactions though....maybe the Bioset is helping?? As far as stuff in foods....I've only been treated for molds and phenolics so far. The phenolics panel was pretty big though....alot of the chemical type stuff in foods. Who knows...maybe it helped some. :huh:

I'm looking forward to getting into foods next week! WOO-HOO!

I miss eggs. My mom was making egg sandwiches this morning.

I'm so glad that you did well with the pie Rachel. I think that's a good sign. :) I wouldn't recommend Racheling anything just yet though.

I'll look forward to reports of the next step of treatments. :)

Emotionally....I didnt do too well through the holiday. :(

Lots of tears and lonliness and just missing life the way it used to be. I didnt go to work yesterday or today because the sadness brought me down and I didnt feel good. :(

I had those balls of stress in my stomach again but its better now...I'm going to work tomorrow.

Its crazy cause I do all this stuff to keep myself feeling good. Avoid all these foods, dont drink alcohol, avoid chemicals....then I keep someone in my life who is more toxic to me than all that stuff put together. :blink:

I decided not to do that to myself anymore...No more toxic people in my life. This is the same person who got me in this mess to begin with....causing me so much stress. Its my New Years resolution to just focus on me....and getting better. :)

I was wondering why you were posting so early......you answered my question.

I think you are making a good decision to just focus on your health and getting better. :)

You can do it! If you want to talk I'm here and can call you back. :)

We bought a tree at 70% off yesterday. It should carry us through until the kids are old enough to leave a more expensive tree alone. The one we really like. Of course it may not be available by the time this one wears out. It's only warrentied for 5 years (2 years for lights) and it was a floor display so I'm not even sure that is valid. I'm only planning on it lasting that 5 years.....hopefully a little more.

Anonymousgurl Contributor
Anonymousgurl
Posted

Rachel- I noticed you said that you've started Bioset treatments! I'm so excited for you because I've been doing it for a couple months now and it helps SO MUCH! I can eat dairy right after my treatments (which I usually can't eat), and a couple of other things that im usually sensitive too, but unfortunately it doesnt clear up my gluten problem, and unfortunately people with lyme disease get re-sensitized quickly.

And I saw that you've started Cat's Claw! I know this sounds weird but I'm actually on cat NIP...because I actually have a co-infection of lyme disease called Babesia and the herb catnip supposedly goes after it.

Thanks for welcoming me to the board everyone :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I think you are making a good decision to just focus on your health and getting better. :)

You can do it! If you want to talk I'm here and can call you back. :)

Thanks Andrea! I'm really gonna stick to this....I need to get my health back and find my happiness. :)

I'm on a mission....I was sure you'd approve! :P

About the tree....I'm glad you got such a great deal!

Check this out...my mom has a real nice tree but didnt put it up this year. They had bought a new TV and the TV is bigger than their old one so they decided not enough room for the tree. <_<

They found another smaller one they like (for next year) and it was on sale....I think it should have been like $90 on sale. Anyways the cashier rang it up for $10. :blink: My mom tried to correct her but she insisted that it was correct and then she gave an *additional* discount on top of that! :blink:

They got this tree for less than 10 bucks....how crazy is that!! :o

Rachel--24 Collaborator
Rachel--24
Posted
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And I saw that you've started Cat's Claw! I know this sounds weird but I'm actually on cat NIP...because I actually have a co-infection of lyme disease called Babesia and the herb catnip supposedly goes after it.

Wow!! I never heard of Catnip for Babesia! I'll have to look that one up. I tested negative for all co-infections but will likely retest later since they dont always show up. I've heard nearly everyone with Lyme has at least one co-infection.

I'm worried that if I have Babesia nothing will work for the Lyme until the co-infection gets addressed. I've read that Babesia should be treated first....before Lyme....because just treating Lyme will be inneffective. I'm gonna talk to my Dr. about this on the 8th. Maybe he'll give me something natural to use on Babesia....just in case I have it.

I read about one herb used for Babesia....it wasnt cat nip though...I forget what it was called. :unsure:

I cant believe you're doing BioSET too! How COOL! I've been going for about 2 months now. I react to *everything* in all the panels. Its crazy. The BioSet practitioner I see is suppossed to best the best in the country for helping people with chemical sensitivities...thats why my Dr. sent me to her. She also does some stuff that other practitioners dont do....she does treatments on the liver detox pathways. Apparantly mine arent functioning well and my first treatments were directed towards clearing my pathways for detox.

I actually love going to BioSET.....I'm totally fascinated by the whole process and want to learn more about it later on. This lady who does my treatments has traveled with Ellen Cutler....the lady who invented bioset. Shes helped people all over the country get better from chronic illness and just listening to her talk I've learned sooooo much. Shes amazing and knows ALOT about Lyme disease.

I dont always get to see her because there are 3 practitioners where I go....but I learn the most when I see her. My Dr. told me the treatments probably wont hold because of the Lyme....he mainly wanted her to clear my pathways and get me detoxing and also to be able to tolerate some important supplements.

Do you find that you are getting re-sensitized following treatment?? I didnt clear all of the chemicals I was treated for and had to redo the treatments. The practitioner says I'm a challenge for her but she says shes never failed anyone yet...hopefully I wont be her first! :huh:

Now she has started rechecking everything to make sure I've held the treatments. I'm gonna start on foods next Tuesday. I just did a bunch of panels for myctoxins/molds/candida. Those were my worst panels. I reacted to 100% of the panels. I usually end up with two full glasses when I go into the treatment room. :(

Thank you soooo much for giving me even more hope about my treatments!!

There is one other girl who posts here who is going through Bioset treatments as well. I LOVE to hear how others are doing with this....it just gives me alot of hope. :)

I expect that I'm not gonna be able to hold all my treatments but I'm just hoping to lessen some of the burden on my immune system and hopefully feel alot better too. I have no idea if the Cats Claw will have a positive efect for me but if I can start killing off some of the Lyme....hopefully clearing out the toxins will allow for less allergies and my treatments will hold better.

Is your Dr. doing anything about the candida problem right now??

AndreaB Contributor
AndreaB
Posted
They got this tree for less than 10 bucks....how crazy is that!! :o

:o

I wish our saleslady had insisted on our tree being a lower price. We got ours for $84 and it was originally $280. We put it up since it wouldn't fit in any bins we had and I've got to order a tree bag. The store was sold out. I may call around and see if any stores have it around here though.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
:o

I wish our saleslady had insisted on our tree being a lower price. We got ours for $84 and it was originally $280. We put it up since it wouldn't fit in any bins we had and I've got to order a tree bag. The store was sold out. I may call around and see if any stores have it around here though.

Andrea....it didnt come in a box??

Was it the display tree? I didnt know they had bags for the trees. I'm really excited you guys got one for a decent price though. I know you really wanted one. :)

I think my mom got the "once in a lifetime" deal. :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
and it was a floor display so I'm not even sure that is valid. I'm only planning on it lasting that 5 years.....hopefully a little more.

Ummm...DUH...maybe I should read the posts more thoroughly before replying. :rolleyes:

AndreaB Contributor
AndreaB
Posted
Ummm...DUH...maybe I should read the posts more thoroughly before replying. :rolleyes:

:lol::lol:

On busy days your forgiven......on not so busy days.....well.......you're still forgiven. :P

CarlaB Enthusiast
CarlaB
Posted

Thanks for the info on cutting back one drop from herxing on the Cat's Claw. I'm taking Nutramedix ... I followed a link Rinne posted, so I think it's what she uses. My directions said to add one drop per day, but I know I won't remember if it was added to the morning dose or afternoon dose, so I add two per day so I can mentally process it! :blink: I'm taking four -- twice per day and doing okay.

I wore myself out over Christmas though, so today I went back to bed after we took my dad to the airport. I almost fell asleep at Maggianos at lunch, I did fall asleep in the car (Adam was driving LOL). I'm so achey and tired, I'm in bed now ... I LOVE my laptop!! I'm going to have to get up to raid some Christmas leftovers soon though.

I don't know if I'll be able to tell when I'm herxing ... I feel like I'm always herxing. I read on Lymenet today that someone said every time they take a sauna they herx for 12-24 hours. I take one every day! My opinion is that I'm sick anyway ... kill the stuff and get rid of it!! :) I'm not cutting back unless the doc tells me to.

Interesting about the cat nip. Rachel, keep us posted on any scientificness you find (peacenlove, we call this place Rachelville, in honor of it's founder, and we have some fun along with the serious talk. We also have some words that are not in Websters!).

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Thanks for the info on cutting back one drop from herxing on the Cat's Claw. I'm taking Nutramedix ... I followed a link Rinne posted, so I think it's what she uses. My directions said to add one drop per day, but I know I won't remember if it was added to the morning dose or afternoon dose, so I add two per day so I can mentally process it! :blink: I'm taking four -- twice per day and doing okay.

Wow...my directions are way different. I have to take only one drop per day and its in 4 ounces of water. It says sensitive people may need to stay on only one drop for awhile. But the directions say a person can take 1-5 drops per day...as instructed by their Dr.

I wonder if my Dr. will have me going over 5 drops?? :unsure:

5 drops seems like nothing but other people say its very powerful. Anyways for now the Bioset lady said the max I can tolerate would be 2 drops. :(

I read that there are only 3 brands of the cats claw that are recommended for Lyme.

Three companies currently market the improved cat
Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Carla,

Another thing thats really important and I'm sure you already know but drink LOTS of water to flush out the toxins and help with the herxes.

I'm not good at drinking water so I'm putting 4 or 5 water bottles on the counter and I just know that by the time I go to bed they need to all be gone. I forgot until right now....so they are still ALL on the counter. :o

CarlaB Enthusiast
CarlaB
Posted

I drink tons of water! I always have! At LEAST two quarts per day!

I have one of those brands you mentioned. My directions say to work up to quite a bit more than 5 drops per day! It says to work up to that, then work up to 15-25 drops twice per day. I think I remember that Rinne is taking 30 drops now. You won't be able to do that for a while though.

I'm also taking a few supplements I've read is good for mercury detox (or detoxing anything really) -- alpha lipoic acid and L acetyl Cysteine (something like that?) which converts to glutathione, which I could not find.

Good info!

Okay, my family is home .... I'm really going to get up and eat this time!

AndreaB Contributor
AndreaB
Posted
I'm not good at drinking water so I'm putting 4 or 5 water bottles on the counter and I just know that by the time I go to bed they need to all be gone. I forgot until right now....so they are still ALL on the counter. :o

Give it time to make it a habit. That makes for a lot of water to get down in the evening. :)

Carla,

Glad to hear your Christmas went well. Now back to the normal routine (with needed rest). :)

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

Carla,

I was reading on LymeNET right now. Remember you had asked me about band 41 and if its positive could it mean there's another "active" infection...other than Lyme?

They had a thread about this...I guess there have been studies. I think about half of the "healthy" controls have positive band 41. They cant really get any accurate results from a study though since many people have Lyme and are asymptomatic. So *some* of the healthy people in the study would have positive 41 because of Lyme. So....I guess theres no real answer to this.

Also...interesting about band 30. Who had positive band 30?? I know I did and think Laura, probably you and Miamia since you two both had alot of positives??

Andrea, do you have everyones results....I should have bookmarked it.

On LymeNet they are saying that band 30 and 31 are both specific for Lyme. I had read that they are similar....I think they are both proteins. 31 is a double starred band but 30 is not.

This is what one person wrote

Most LLMD's will tell you that the 30 band is just as lyme specific as you get. It's true the 41 band theoretically could be something else, but that's not likely in conjunction with other bands and symptoms present.

Hmmm....I had a positive 30 on IgM. That better health guy had told me it was significant. Its sooo hard to know what is *fact* and what is perceived to be fact. <_<

I'm gonna try to find more...

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

      By trents · Posted

      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
      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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