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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted
Dear Rachel and Carla,

Will do with the posts! No prob! I hate healthy people, too. They whine and cry about stupid things. Boohoo I broke a nail! They should be grateful they do not feel like their arm is going to fall off! :)

Dear Laura,

Good luck with that IV! We are all pulling for you in Rachelville! Wow, it sure was something that diagnosis of yours. You never hear about RMSF these days. Why don't they talk about it more? You have to wonder.

Dear Claire,

Sugar is so addictive! I don't know when I will get off of it. You get withdrawal. It drives you crazy! I have reduced my intake of caffeine and sugar at least. I am still having heart palpitations, though.

Dear Lyme Sufferers,

Do you guys get ringing in your ears? I get it twice a day sometimes. It is so annoying! It is like having the freakin' Emergency Broadcasting System in your ear! There are times you just cannot stand it!

Sincerely,

NoGluGirl

Yes! Ear ringing and heart palpitations are both Lyme symptoms.

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CarlaB Enthusiast
CarlaB
Posted
carla

I totaly know how you feel I have no appetitie to begin with and then by the time I take all my supplements eating juwst becomes painful for me!! SO frutrating

I guess I can look at the bright side ... at least I'm not having trouble keeping my weight up!! :P I have to eat high fat (and enough food) to take the Mepron. If I don't eat enough, I get really nauseous with it.

Andrea, why does the check have to be turned over to the state? Sorry you're down about it.

Rachel, sounds like your immune system needs a tutor!! I have also wondered if I'll be able to have gluten again when I get through this all. I never had stomach issues except during a Lyme flare. I can't say I'll ever go back to eating it all the time like I used to, even if I can tolerate it a bit.

AndreaB Contributor
AndreaB
Posted
Andrea, why does the check have to be turned over to the state? Sorry you're down about it.

It's his monthly retirement check and works the same as social security. The government gets back the money that wasn't used, it's prorated.

Maybe she'll send up a personal check so we can still keep it though. :)

I'm doing better today and the weekend is almost here.

AndreaB Contributor
AndreaB
Posted
carla

I totaly know how you feel I have no appetitie to begin with and then by the time I take all my supplements eating juwst becomes painful for me!! SO frutrating

Mia,

Are you done with your antibiotics? Have you had another test done? What's up with you?

happygirl Collaborator
happygirl
Posted

x

happygirl Collaborator
happygirl
Posted

sorry---it double posted----so I deleted. xoxo

AndreaB Contributor
AndreaB
Posted

Laura,

I hear you. It is nice to know what to do for what and with so many of these things this thread has talked about, it's hard. There are so many variables.

I can understand the mixed feelings as well. Is your doctor going to do another test after a short antibiotic course or just continue with treatments?

Sorry about your reaction today. That doesn't sound like fun, on top of not finding the vein the first time.

Thank you for the update. :)

Hope you feel better soon, if you don't yet.

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CarlaB Enthusiast
CarlaB
Posted

Laura, it's not uncommon to not have seen the tick bite, but you probaby know that already. If you herx, then you'll have definate confirmation that you have it. Then again, some never herx.

I know what you mean about the docs knowing more about celiac than Lyme ... I never would have thought there was a disease they knew less about than celiac! Everything is basically experimental with this ... you just have to trust the doc and be sure he's made others feel better, that's all you have to go on with this one.

With the co-infections, there's no doubt you had a tick bite, but I can understand why you're not convinced there's a borrelia infection ... there probably is based on symptoms though.

I hope you start feeling better soon. I'm finally over the herx from starting the new medication ... thank goodness. If I didn't get a little better soon, Adam would have collapsed, working all day, then coming home and cooking dinner.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yes Miss M, please fill us in (although I got your PM, I know everyone else is worried and wants some updates). :)

Me!! (raises hand) I'm one of the worried ones who wants an update. :)

M, I always log on for a few minutes in the morning before I go to work....usually I see you on at that time....its nice because then I dont worry so much....even though you're not posting I still see you. :)

I think about everyone everyday.....whether you post or not. I miss Julie alot and hope she'll be back soon. Miss reading Rinne's posts as well. Just know that you are all in my thoughts and in my heart. :wub:

Someone asked what my family thinks about all this (was that you, Rach?) I think we all kind of have mixed feelings. Confused about all this since I didn't score "clearly" positive. Happy that I have a doctor who is willing to treat me. A little out of our comfort zone since it is some 'unconventional' treatments. Basically, this is all so far beyond my realm of comprehension....And I think I'm a pretty smart person, I really "get" what Celiac is all about, etc...but this just seems so out there. Part of that reason is that truly little is known about this stuff (man, I thought little was known about Celiac......this pales in comparison).

Yeah...it was me who asked. ;)

I can relate to everything you wrote here. Sometimes I just go "Wow....is all of this really real?? How can something like this happen??" :blink:

Sometimes it hits me how crazy everything seems...and how complicated it all is....and I do get overwhelmed with how very serious it all is.....and like you said...it goes beyond my realm of comprehension.

It was very out of my comfort zone in the beginning which is probably why I turned my back on my instincts and focused more on "conventional" things.....everything else seemed way too difficult and even unbelievable.

Now I suppose I have made it my comfort zone.....with all of the research and scientificness...I guess I have made myself more "at home" with this. It feels a little less intimidating as long as I can follow along and have some kind of understanding of whats going on. Thats probably alot to do with all the scientificness...so that I dont fall out of my comfort zone and it probably gives me some sense of control over the situation.

Yeah....Celiac seems so "mainstream" to me now. Everything about Celiac seems so easy to understand and to grasp and to treat.

This is soooo NOT easy....it really is HARD. I think it does get easier though...it will definately become less "foreign" once everything settles down and you learn more and get more comfortable with the treatment and the diagnosis.

My main problem with everything is the constant questioning that goes on in my head about all of the variables and what if something is missed? What if we have it wrong? What if....what if.... :unsure:

I think for me....the BioSET and the ART make me feel like I have some kind of "window" to peek inside and it sort of makes me feel more secure...I guess I need that...its kind of like confirmation that I'm doing things right....and that everthing is "real".....these things really do happen. As crazy as it seems....its really not so "out there"....all of us are experiencing similar challenges....we're definately not alone.

I have felt exactly how you're feeling and its definately normal....if you were completely comfortable with everything I think I might be sitting back scratching my head wondering what the heck my problem is?? :huh:

Hope all goes well with your next IV....hopefully that "glitch" (or whatever it was) is done and over... and its smooth sailing with the IV's from here on out. :)

Also, like Carla said (and I know you know this ;) )......most people do not ever see a bite or a rash. There is no way to really know when you might have gotten this.

I read that not everyone gets a rash with RMSF....I would imagine with positive bloodwork you definately must have gotten bit at some time...with no knowledge of it. I know this isnt gonna stop all the questions from running through your head....I'm just trying to be reassuring. ;)

Dont know which test you had but it sounded like the bloodtest for RMSF is very specific.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I'm doing better today and the weekend is almost here.

Andrea,

Sorry you were feeling down again yesterday.....but glad you are doing better now. :)

I missed you on Sunday...you were out. I'll try again this weekend. :)

I dont like your dads wife too much right now. :angry:

AndreaB Contributor
AndreaB
Posted
I missed you on Sunday...you were out. I'll try again this weekend. :)

We went grocery shopping. :) Sunday is usually a shopping day, but not always.

Should be home this weekend. Pretty much out of money until next friday.

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

I had a very interesting BioSET session tonight. :)

I dont have time (or brain function) to share everything right now but it was a good appt. that I had with Denise. I'll probably post when my mind is more clear...hopefully tomorrow. Lots of scientificness. ;)

Check this out!!!!! :blink:

At work for the past few weeks there has been this HEINOUS stench coming from one of the checkstands...like something had crawled under there and died. :unsure:

Nobody has used that checkstand at all and the smell spread so that pretty much even the surrounding checkstands were avoided by most people with any sense of smell.....ummm yeah....especially me!! It smelled alot like rotten chicken. <_<

They took the entire checkstand apart and could not find the source of the wretched odor so we've just been dealing with it. Then they tried to "help" it by wrapping plastic all around the checkstand....and then someone had the bright idea of stuffing some mothballs into the plastic. :rolleyes:

The mothballs made everything alot worse.....especially for me. After that it smelled like rotten chicken and dirty diaper. :blink:

So...various people have come in to *stare* at the checkstand and ponder what might be going on....most of the employees came to the conclusion that someone was buried underneath the store and the smell was coming through the ground. :o

They were thinking we might end up on TV....Forensic Files maybe??

I was off Monday and Tuesday....went in yesterday and asked my boss what was up with the smell....did anyone figure it out yet?? She said yeah....some people came in and found what it was.

I'm like "And???? What the heck was it???"

So she tells me "Its FUNGUS" :blink::blink:

I'm like...."MOLD???? Are you telling me its MOLD??!!" :o:o

She said...."Dont go near it.....dont even look over there....just stay away from the whole area." :huh:

So yeah...there is some horrible FUNGUS growing right there!! Apparantly they took some samples to find out if its toxic or what it is exactly. They might have to tear the whole checkstand down....and possibly others....we dont know yet.

Nobody is using the checkstands around there because its kind of worrisome....people are like "What if the mold could be harmful??"" I'm like...EVERY mold is harmful to me!! :blink:

Yeah...I'm a little freaked out by the fact that I'm trying to avoid mold like the plague (worrying about everything I eat) and then there's this major growth right under my nose!! :o

Stupid mold. :angry:

AndreaB Contributor
AndreaB
Posted
So she tells me "Its FUNGUS" :blink::blink:

I'm like...."MOLD???? Are you telling me its MOLD??!!" :o:o

She said...."Dont go near it.....dont even look over there....just stay away from the whole area." :huh:

So yeah...there is some horrible FUNGUS growing right there!! Apparantly they took some samples to find out if its toxic or what it is exactly. They might have to tear the whole checkstand down....and possibly others....we dont know yet.

Nobody is using the checkstands around there because its kind of worrisome....people are like "What if the mold could be harmful??"" I'm like...EVERY mold is harmful to me!! :blink:

Yeah...I'm a little freaked out by the fact that I'm trying to avoid mold like the plague (worrying about everything I eat) and then there's this major growth right under my nose!! :o

Stupid mold. :angry:

:o:o:blink::blink:

Unbelievable. Will be waiting expectantly for updates on what the tests yield for this stuff. It's no wonder you haven't been terribly sick. :(

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

Gotta go to bed now. -_-

My mom said I gotta go to bed early and get my beauty sleep.

I told her I dont need to because I'm ugly anyways. :P

She said I'll get even uglier if I dont get my beauty sleep. :o

Sooooo....guess I better get some ZZZZzzzz's now. :lol:

Will post about BioSET tomorrow. :)

NoGluGirl Contributor
NoGluGirl
Posted
I had a very interesting BioSET session tonight. :)

I dont have time (or brain function) to share everything right now but it was a good appt. that I had with Denise. I'll probably post when my mind is more clear...hopefully tomorrow. Lots of scientificness. ;)

Check this out!!!!! :blink:

At work for the past few weeks there has been this HEINOUS stench coming from one of the checkstands...like something had crawled under there and died. :unsure:

Nobody has used that checkstand at all and the smell spread so that pretty much even the surrounding checkstands were avoided by most people with any sense of smell.....ummm yeah....especially me!! It smelled alot like rotten chicken. <_<

They took the entire checkstand apart and could not find the source of the wretched odor so we've just been dealing with it. Then they tried to "help" it by wrapping plastic all around the checkstand....and then someone had the bright idea of stuffing some mothballs into the plastic. :rolleyes:

The mothballs made everything alot worse.....especially for me. After that it smelled like rotten chicken and dirty diaper. :blink:

So...various people have come in to *stare* at the checkstand and ponder what might be going on....most of the employees came to the conclusion that someone was buried underneath the store and the smell was coming through the ground. :o

They were thinking we might end up on TV....Forensic Files maybe??

I was off Monday and Tuesday....went in yesterday and asked my boss what was up with the smell....did anyone figure it out yet?? She said yeah....some people came in and found what it was.

I'm like "And???? What the heck was it???"

So she tells me "Its FUNGUS" :blink::blink:

I'm like...."MOLD???? Are you telling me its MOLD??!!" :o:o

She said...."Dont go near it.....dont even look over there....just stay away from the whole area." :huh:

So yeah...there is some horrible FUNGUS growing right there!! Apparantly they took some samples to find out if its toxic or what it is exactly. They might have to tear the whole checkstand down....and possibly others....we dont know yet.

Nobody is using the checkstands around there because its kind of worrisome....people are like "What if the mold could be harmful??"" I'm like...EVERY mold is harmful to me!! :blink:

Yeah...I'm a little freaked out by the fact that I'm trying to avoid mold like the plague (worrying about everything I eat) and then there's this major growth right under my nose!! :o

Stupid mold. :angry:

Dear Rachel,

Mold sucks. It is everywhere! You know what me and CarlaB found out on another thread?

A guy posted that a lot of fresh fruits are sprayed with Candida Yeast! That would explain the gas I get and why my nose runs when I eat it. It never mattered which fruit.

Also, you know how you had trouble with your veggies? Well, make sure you do not use anything but purified water to rinse any if they are fresh. If I recall correctly, you have been eating only frozen at this point, but I wanted to be sure. The chlorine in tap water will irritate your symptoms. Any relief is good from such symptoms!

Dear CarlaB,

I am glad you mentioned that. Lyme definately is a possibility. Of all the specialists I have seen over the years, not one ever mentioned Lyme. How irritating is that? Doctors are so stupid!

Dear Laura,

You are so welcome! You know, I do not remember ever being bit by a tick, either. As Carla, Donna, and Rachel pointed out, though, that does not matter. Many times, they go unnoticed. I know what it is like with family and illness, too. Even if they choose not to be there for you, we will!

Sincerely,

NoGluGirl

P.S. How do you guys like my avatar I just added?

elisabet Contributor
elisabet
Posted

[

I gotta get my enzymes working again.....maybe I will have pizza again someday. :o

miamia Rookie
miamia
Posted
Mia,

Are you done with your antibiotics? Have you had another test done? What's up with you?

Andrea-

thanks for checking up on me-

I have been reading but not posting because i have just been overwhelmed.

Here is an update I am still doing antibiotic shots we recently changed which one I was taking thought this one is stronger . I had started out on a really low dose one to get my body kind of used to it but to really kill the lyme or other bacteria I needed to go on a stronger one. I also Just recenlty finished my second round of this 3 day medication for worms and parasites. My doctor fels very strongly that both of those are high possibilities for me. After the second round of this treatment I strated to feel some changes- I still was not feeling great but I noticed an improvement in my bowel movements and some other areas. I goot really excited but then I went away last weekend and got so sick!!! I was so sick the whole time worse then I have been in along time. Yesturday was the first day I felt a little more normal (normal for me that is) . So of course now I am scared I un did anything that I might have done by going on the treatment. I had a shot yesturday and my doc is going to put me on another 3 day medication but for diifferent parasites (I forgot the name s of these- but I will post them later) I think I am going to give myself today though to let my body try to regain some balance and then start them tomorrow.

Rachel and Laura

I so relate to everything both of you said about feeling overwhelmed- and rachel that question- "Is this really happening?" Is this real? That question pops into my mind often and ever time I feel like the ground shakes - its like a wake up call- becasue I am in so many ways just used to not feeling well and just accept his is my life right now I think realizing how sick I am is always still suprising to me. (Idon't know if this make sense)

I guess I am just really hoping that some of the things I am doing are the right things for me and that I am finally getting to the root of all this. If I could finally do that then maybe I sould finally really treat the candida and leaky gut succesfully but I know that just trying to treat those is useless for me right now.

Andrea- I hope you are feeling better

Miamia

CarlaB Enthusiast
CarlaB
Posted
Me!! (raises hand) I'm one of the worried ones who wants an update. :)

I think about everyone everyday.....whether you post or not. I miss Julie alot and hope she'll be back soon. Miss reading Rinne's posts as well. Just know that you are all in my thoughts and in my heart. :wub:

me, too!

Sometimes I just go "Wow....is all of this really real?? How can something like this happen??" :blink:

Sometimes it hits me how crazy everything seems...and how complicated it all is....and I do get overwhelmed with how very serious it all is.....and like you said...it goes beyond my realm of comprehension.

This is soooo NOT easy....it really is HARD. I think it does get easier though...it will definately become less "foreign" once everything settles down and you learn more and get more comfortable with the treatment and the diagnosis.

I have felt exactly how you're feeling and its definately normal

It is very hard. It's hard to understand how I can be so healthy, yet so sick. I'm very healthy in all ways except for this infection. Even with the infection, for years and years I lived normally and felt good, though I can look back and see I've had symptoms all along.

I did have flare-ups in the past that were pretty serious, but my "normal" old self operated at 100%. If I operated at 100% before treatment, I KNOW I'll get there again.

It's almost surreal.

Since it's so complicated, that's why we need to really trust our doctors. In all the other cases in our lives we have researched and taken care of ourselves. We can't do it with this. It takes experience and understanding of the disease and all the variations it can have.

It will sink in ... but it will always seem unbelievable. I try to take it day by day, otherwise it gets too overwhelming.

CarlaB Enthusiast
CarlaB
Posted
Of all the specialists I have seen over the years, not one ever mentioned Lyme. How irritating is that? Doctors are so stupid!

P.S. How do you guys like my avatar I just added?

Nice avatar! It's good to put a face with the name!

No one ever mentioned Lyme for me, either.

dlp252 Apprentice
dlp252
Posted

Andrea - sorry you had a down day, but glad you are feeling better.

Mia - good to hear from you! Hope you feel better soon.

Laura - I'm sorry that second IV didn't go so well! Hoping it will get better!

Egads Rachel! Mold everywhere, sheesh!

NoGluGirl - love the new picture!

Carla - it IS all so complicated! I feel overwhelmed and I don't have half the problems some of you have!

CarlaB Enthusiast
CarlaB
Posted

Miamia, it's nice to hear your update!

It does take STRONG meds to get rid of this. My pharmacist said that I'm taking higher than the highest dose recommended by the manufacturer of Mepron ... I mentioned the doxy was high, too, and he said yes it was. It takes a lot to kill these bugs.

Sorry you were feeling so bad. I don't think it will set you back, I think it's normal to feel bad once in a while with the treatment.

Laura, since you're starting your abx this weekend, I wanted to mention that I found putting lemon in my water (I use one lemon per day) and taking charcoal helped get me over the herx. You can't take the charcoal near any other medication, supplement, etc., so I keep mine beside my bed and take it when I wake up in the middle of the night since my daily med schedule is hard enough to keep! :P I drink the lemon water all day long.

CarlaB Enthusiast
CarlaB
Posted
I feel overwhelmed and I don't have half the problems some of you have!

Don't feel like you have fewer problems than anyone else ... we're all in the same boat! Each one of us has a complicated problem, they're just different.

Jestgar Rising Star
Jestgar
Posted
So she tells me "Its FUNGUS"

So yeah...there is some horrible FUNGUS growing right there!! Apparantly they took some samples to find out if its toxic or what it is exactly. They might have to tear the whole checkstand down....and possibly others....we dont know yet.

yuck. Not shopping in your store!

Rachel, just wanted to remind you that chlorine in water dissipates over a few hours. You might be able to save your self some money by prewashing all your fruits and veggies in "old" water and just doing a quick rinse with filtered water.

Also, with regard to the same process, when you run your water all of the dissolved gases have the opportunity to escape into the air. Not sure how sensitive you are, but if you run a bath without filtration, you might want to leave the fan on to clear the air.

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted
P.S. How do you guys like my avatar I just added?

It's so nice to see you. I love knowing who I'm talking too.

That said, I don't even have a picture of me on my avatar. :lol: I do have one of me in profile page though. :)

I guess I am just really hoping that some of the things I am doing are the right things for me and that I am finally getting to the root of all this. If I could finally do that then maybe I sould finally really treat the candida and leaky gut succesfully but I know that just trying to treat those is useless for me right now.

Andrea- I hope you are feeling better

Miamia

You're on the path, you've found a big part with the lyme and co-infections. Hopefully you'll start feeling better more as more of these nasties get taken care of.

I'm doing better agian.....Thanks. :)

It will sink in ... but it will always seem unbelievable. I try to take it day by day, otherwise it gets too overwhelming.

Most things that would overwhelm us need to be taken day by day or we'd be lost in misery and depression. It's ok to have down days though and that's what we are here for.....support.

Carla - it IS all so complicated! I feel overwhelmed and I don't have half the problems some of you have!

I think I'm among the "least problematic" people on this thread.

Love you guys though :wub:. That's why I'm here and you are all a great bunch of gals (along with the occasional guy). :)

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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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