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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
cannot......get.....sucked.......back.....into the vortex..... ;)

:lol::lol:

OMG....and what a vortex it was last summer!!! :blink:

Glad your back Susan....and I love that new picture of the Dingos. :)

You must get baby pictures scanned...we have to see Mini DingoGirl. :D


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NoGluGirl Contributor

Dear Patti, Bev, and Donna,

Your pics are so cute! I am going to try and get some more to put up. I have a Glamour Shot photo from when I was 13. I will try and load that in here. Alison wants to see a pic of my dad.

Dear Andrea,

I think the only one you missed was Laura.

Dear Susan,

Weed eating pigs! ROFLMAO! :lol: Now that is hilarious! Can you imagine trying to explain that on your taxes? I bet that guy had to be very creative on his W-2! :lol:

Dear Bev,

I know Claire is familiar with how you feel. It is a tough call to make. Having a child is a big decision. When your health is poor, you feel like you are stuck. My mother is complaining about grandchildren, and it is like "I told you I was going to adopt from China!" I am not well enough to care for a child at the moment. I was sort of hoping to have a husband first, too. A baby is a lot of work for two healthy people, let alone a sick one!

Here is something interesting about adoption. Jimmy Durante (actor, comedian, songwriter, singer) and his second wife adopted. He was already older in 1960 when he and his second wife married. Exactly one year later on Christmas Day, 1961, they wanted to adopt. However, it was brought up that they believed he was too old to care for a child. The judge ignored that argument, saying "I have heard this man sing "Young at Heart!" Mr. Durante and his wife were granted the adoption. :) He doted on Cecelia (he called her CeCe), until the day he died in 1980.

You are welcome for the info on PPIs. Nexium made me nauseous. I could not tolerate it. PPIs tend to have a rebound effect on your system a lot. Once you go off of them, or try to, your stomach overcompensates by producing an acid surge. I think I know something you might be able to have. As long as you do not have an ulcer, you could get orange peel extract in capsules at the healthfood store for reflux. It is supposed to be very helpful. From what you said, your big trouble is the sphincter of your esophagus not closing all the way. There is your primary cause, you just have to find soething that relaxes it so it closes when it is supposed to.

Dear Donna,

The pain under your ribcage could be your gallbladder. You said you have had difficulty with your duct before. That is exactly where mine hurts when I eat too much fat. The other possibility is yeast. It can cause bad reflux, D, and stomach problems in general. Nausea is known to be common with it. Also, here is something interesting I read in one of the books about yeast. It said that women who are pregnant who have bad morning sickness likely have Candida.

Dear Claire,

I need to start taking a multivitamin at the very least a day. The chocolate makes me feel better. There must be magnesium or something in it that I need. It is just, my trouble with the cravings is, I have a period off and on all the time! :( This has been going on for more than two years.

I am always menstrual! :blink: If I had to guess, I would say Candida is to blame! :angry:

Dear Laura,

I am sorry to hear you are herxing. That is always miserable. Hopefully, you will be better soon. This stuff always tends to get you down. Maybe cuddling with your boyfriend will make you feel better! Oh, yeah, you do look like a model in that photo!

RACHELVILLE NEWS

Today there were new additions to the dictionary. They are:

Weed-eating pigs - pigs which consume marijuana and become intoxicated

Lyme-Centric - Centered around, related to Lyme Disease

The trial date for the Auxigro Lawsuit has been set. It has been arranged some of the Redneck Deer defending the town shall testify. Buck is the first to volunteer. His comment was "Git-R-Done!" Bongo, my favorite purple glittery bat wanted to testify, but I explained to him that the pink glittery berry scented tirds are not allowed in the courtroom by law. He was very disappointed. I told him he can make the statement to the press, though. He was happy. :lol:

Sincerely,

NoGluGirl

DingoGirl Enthusiast
You must get baby pictures scanned...we have to see Mini DingoGirl. :D

oh holy loooooooooord...... ;) I will see what I can do. Also have some photos that I think I'll scan of a certain angry little singer that I once dated. no names at this point, please. :P But y'all will like it, I think.

Dear Susan,

Weed eating pigs! ROFLMAO! :lol: Now that is hilarious! Can you imagine trying to explain that on your taxes? I bet that guy had to be very creative on his W-2! :lol:

Hi Jin, have we met? :) Um, TAXES? W-2's? in Big Sur? now that did make me crack up! That boy, I assure you, did not even file taxes.....I am not sure he had an address...the yert was on someone's property......over 40 minutes off the main road, on a very windy adn dangerous cliff-side road - - perilous driving - he could hide there forever.......with his weed-eating tweedle pigs!

can't sleep......but going back to try!

Thanks for the warm welcome back to R-ville. I can assure you, I won't be around like last summer's madness (but what FUN did we have!!) but will pop in more regularly and thanks, Andrea, I WILL ask questions.

g'night!

NoGluGirl Contributor
oh holy loooooooooord...... ;) I will see what I can do. Also have some photos that I think I'll scan of a certain angry little singer that I once dated. no names at this point, please. :P But y'all will like it, I think.

Hi Jin, have we met? :) Um, TAXES? W-2's? in Big Sur? now that did make me crack up! That boy, I assure you, did not even file taxes.....I am not sure he had an address...the yert was on someone's property......over 40 minutes off the main road, on a very windy adn dangerous cliff-side road - - perilous driving - he could hide there forever.......with his weed-eating tweedle pigs!

can't sleep......but going back to try!

Thanks for the warm welcome back to R-ville. I can assure you, I won't be around like last summer's madness (but what FUN did we have!!) but will pop in more regularly and thanks, Andrea, I WILL ask questions.

g'night!

Dear Susan,

You never know! We could have met somewhere! :lol: So the yert was on someone else's property. Somehow, Tommy Chong comes to mind! :P I love him! Leo on That 70's Show! :lol: If the yert was in Colorado, he and his weed eating Tweedle pigs would bring a whole new meaning to "Rocky Mountain High"! :lol:

Sincerely,

Jin

P.S. Rinne - I see you! :)

rinne Apprentice

I'm back at page 980, just catching up and suddenly realized that I missed the one year celebration of this thread. Darn.

So glad to find old friends wandering back in and new ones finding Rachelville too. :wub:

Really sleepy, it has been a busy couple of days and all is well. My little business is registered, my caterer's license is on the way and small contracts for the "Rinne Bars" are beginning to happen.

I'll be back tomorrow after I've caught up.

Just one thing, anything that stops acid production in your stomach stops the absorption of Vitamin B, neurological problems can result from this. It is a good idea to get your doctor to check you Vitamin B levels. The standard chart that doctors refer to as to the acceptable levels of B12 say from 178 - 788 (approx) but anything lower than 400 should give you cause for concern.

This fast reply won't let me use emoticons ): oh well LOL :wub:

AndreaB Contributor
Awww...poor T. :(

I hope shes feeling alot better today.

Stupid banana. :angry:

She's fine now. She was better yesterday afternoon.

I don't know what it is about bananas and this family. Micah is the only one that can tolerate them. I gave Seth some and he seemed to do ok but I'm not going to push it. He had gotten to the point where he wouldn't eat baby food that had banana in it. He does have a diaper rash again so it's either that or the orange. Talitha is highly intolerant to citrus (according to ELISA) so I'm wondering if Seth will follow suit if the mercury is behind it. :unsure:

Thanks for the mercury posting. :) I sure wish we could afford ART sooner rather than later. :(

AndreaB Contributor

Night Rinne.

Sounds like you had a good launch with your bars. :)

Look forward to updates as you have them.


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NoGluGirl Contributor
I'm back at page 980, just catching up and suddenly realized that I missed the one year celebration of this thread. Darn.

So glad to find old friends wandering back in and new ones finding Rachelville too. :wub:

Really sleepy, it has been a busy couple of days and all is well. My little business is registered, my caterer's license is on the way and small contracts for the "Rinne Bars" are beginning to happen.

I'll be back tomorrow after I've caught up.

Just one thing, anything that stops acid production in your stomach stops the absorption of Vitamin B, neurological problems can result from this. It is a good idea to get your doctor to check you Vitamin B levels. The standard chart that doctors refer to as to the acceptable levels of B12 say from 178 - 788 (approx) but anything lower than 400 should give you cause for concern.

This fast reply won't let me use emoticons ): oh well LOL :wub:

Dear Rinne,

This is so exciting! Our very own resident taifun! :P Rachelville is so excited! Congratulations on your catering license! Also, regarding the vitamin levels, I have been concerned about that. I have been on PPIs for so long, and am aware that if you are too alkaline in your stomach it can actually cause further problems. I have never had mine checked. Supplements would likely do no good, unless they are sublingual or injected.

Dear Rachel,

Okay, I have a suggestion. For the Lyme Group, in case I end up joining, I must say we need to be stylish. I was thinking we could wear white suits and fedoras, with a Lyme green band on the hat. Since there is a guy in the group now, how about calling it the Borrelia Buddies? Just because we are sick does not mean we cannot look good meanwhile! ;)

Sincerely,

NoGluGirl

happygirl Collaborator

Goodmorning ladies! Hope that everyone is having a good weekend so far! Its nice to see everyone back on here.

Susan, the picture you were referring to was taken in 2002 while I was in school....needless to say, I was at a more normal weight, and um, certain parts :) of me were um, larger than what they are now. :) Happy to have you back on here, my dear!

Rinne, good luck with your bars...and please keep us updated. So exciting for you!!!! It really is good to have everyone back on.

Bev, you'll have to email me and let me know who your doc is. I'm excited for you. The good news with many LLMDs is that they don't "just" look for Lyme...they look for other infections, etc that could be causing problems. I was positive for other non-co-infections, and part of my treatment includes fixing those problems.

Which leads me to my update:

I see my LLMD or NP every two weeks (usually 2 NP and then a MD). I have blood draw at least once a week. I am on Omnicef and now Zithromax.

I go in 2x a week, every week, for IVs (Vit C and other vitamins, minerals, etc). Unfortunately, I have had increasing trouble tolerating the IVs. My right arm (the regular vein used for blood draws, etc) has a vein that has now hardened and I have a dark streak where you can see it. It is painful but luckily, it is starting to lessen. We now use multiple veins up and down my arms, some of which like me more than others. They have 3 'med tech/LPN' level technicians and 1 RN...because of my sensitivity, the pain that I have some days, the trouble with my veins, etc., only the RN actually does my IVs and gets me started. If it weren't for their comfort, I think I would have given up. I was really ready to quit some weeks, after having the IVs started multiple times in multiple veins, and none of them working/being extremely painful. But, the past few times I have tolerated pretty well. Luckily, my job is great about it, as the IVs take 2-3 hours (my body is really slow in absorbing it). 2x a week, plus doctors appts, etc.

I've developed some other problems, yeast wise, because of the abx. I've been on diflucan for a few weeks now. They are re-testing me to see if they need to switch the meds.

My original co-infections tests (jan/feb?) were positive for RMSF, but no others. Because of some of the symptoms I was having, the NP re-ran the tests this month. I am no longer positive for RMSF!!!!

My bilirubin (liver) levels have been elevated since my pre-celiac diagnosis, with no explanation why. In recent months, it began rising again. This latest round of bloodwork reported that it dropped to WELL within normal ranges...not even "high" normal, but right smack dab in the middle of normal. Considering that it has been high for at 3+ years (I went through my records and they were all elevated), I was really excited about it!!!

We haven't re-tested my Lyme numbers yet...probably in May/June. They are adding an anti-viral since my EBV IgG titers were so extremely high. I'll probably start that today.

I'm having the blood test run this week for HHV-6, which has been linked to various issues. I'm also going to ask (at my next app't) to have the C D 57 test run.

We FINALLY got my biopsy samples from my endoscopy in VB and they were sent to MDL to do a PCR on the samples. Turns out, they sent the slides of my biopsies, and they actually need the paraffin blocks of my samples. So, now I have to find out if they can send them, and then start the process all over again.

Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

Ok, that is enough of my ramble, but that is my update....

dlp252 Apprentice
I always like black and whites for some reason. I change alot of my photos to b&w cuz they just have a whole different "feel" to them.

:lol: I have no choice, remember, cameras weren't invented yet when I was young--only B&W available then. :lol:

cannot......get.....sucked.......back.....into the vortex..... ;)

Too late sweetie! :lol: You're sucked!

thereitness

:lol: you said thereitness

Yup...my coinfections test was negative but ART reveals Babesia. <_<

I asked my Doc tonight what he thought about ART.

He said he always prefers to actually *see* something definate...he prefers clinical laboratory results but because of the nature of these diseases its just not always possible. He does value these other more alternative methods of testing.....which may pick up what cant be found in the blood.

We discussed Babesia in particular....I told him even though my bloodwork was neg. I could have a different strain than what was tested.

He agreed....there are 20 strains of Babesia and we're only able to test for 2 of those strains. So yeah...that leaves 18 strains not even available for blood testing. He said from a clinical standpoint he feels I have Babesia....but its nice to have it confirmed with stuff like ART and BioSET.

This is encouraging! I'm sort of glad he thinks this way. I think I wouldn't be comfortable if he JUST treated me on the basis of what ART or BioSET said, but I'm glad he considers them and considers them in relation to the treatments. Did that make sense?! :lol: I finally got a little sleep last night and I think my body doesn't know what to do with it! :lol:

So are you getting the CD57?? :lol:

The pain under your ribcage could be your gallbladder. You said you have had difficulty with your duct before. That is exactly where mine hurts when I eat too much fat. The other possibility is yeast. It can cause bad reflux, D, and stomach problems in general. Nausea is known to be common with it. Also, here is something interesting I read in one of the books about yeast. It said that women who are pregnant who have bad morning sickness likely have Candida.

It could be I guess. Yes, I still have the enlarged duct too. I think my PCP will refer me back to the GI doc anytime I want...I actually don't NEED her to refer me, I can go on my own, but I think if she sends me he won't think twice about retesting me whereas if I go on my own I think he might think I'm being paranoid, lol.

Also have some photos that I think I'll scan of a certain angry little singer that I once dated. no names at this point, please. But y'all will like it, I think.

:lol: Ohhhhh goodie, can't wait. :lol:

Just one thing, anything that stops acid production in your stomach stops the absorption of Vitamin B, neurological problems can result from this. It is a good idea to get your doctor to check you Vitamin B levels. The standard chart that doctors refer to as to the acceptable levels of B12 say from 178 - 788 (approx) but anything lower than 400 should give you cause for concern.

Wow, sounds like your venture is off to a great start! That's interesting about the B vitamins and that makes sense. I was on the antacids last year for my scopes then again in Dec/Jan for the H.Pylori...no wonder Anna at BioSET said my body was craving the B vitamins, lol.

Okay, I have a suggestion. For the Lyme Group, in case I end up joining, I must say we need to be stylish. I was thinking we could wear white suits and fedoras, with a Lyme green band on the hat. Since there is a guy in the group now, how about calling it the Borrelia Buddies? Just because we are sick does not mean we cannot look good meanwhile! ;)

My head it too big for hats, lol. :lol: Seriously! Hats don't fit me, and well, me and suits don't mix...but I can wear white jeans and tee-shirt, lol. I have a lyme green purse though. :lol:

dlp252 Apprentice
Which leads me to my update:

...

I go in 2x a week, every week, for IVs (Vit C and other vitamins, minerals, etc). Unfortunately, I have had increasing trouble tolerating the IVs. My right arm (the regular vein used for blood draws, etc) has a vein that has now hardened and I have a dark streak where you can see it. It is painful but luckily, it is starting to lessen. We now use multiple veins up and down my arms, some of which like me more than others. They have 3 'med tech/LPN' level technicians and 1 RN...because of my sensitivity, the pain that I have some days, the trouble with my veins, etc., only the RN actually does my IVs and gets me started. If it weren't for their comfort, I think I would have given up. I was really ready to quit some weeks, after having the IVs started multiple times in multiple veins, and none of them working/being extremely painful. But, the past few times I have tolerated pretty well. Luckily, my job is great about it, as the IVs take 2-3 hours (my body is really slow in absorbing it). 2x a week, plus doctors appts, etc.

I've developed some other problems, yeast wise, because of the abx. I've been on diflucan for a few weeks now. They are re-testing me to see if they need to switch the meds.

My original co-infections tests (jan/feb?) were positive for RMSF, but no others. Because of some of the symptoms I was having, the NP re-ran the tests this month. I am no longer positive for RMSF!!!!

My bilirubin (liver) levels have been elevated since my pre-celiac diagnosis, with no explanation why. In recent months, it began rising again. This latest round of bloodwork reported that it dropped to WELL within normal ranges...not even "high" normal, but right smack dab in the middle of normal. Considering that it has been high for at 3+ years (I went through my records and they were all elevated), I was really excited about it!!!

We haven't re-tested my Lyme numbers yet...probably in May/June. They are adding an anti-viral since my EBV IgG titers were so extremely high. I'll probably start that today.

I'm having the blood test run this week for HHV-6, which has been linked to various issues. I'm also going to ask (at my next app't) to have the C D 57 test run.

We FINALLY got my biopsy samples from my endoscopy in VB and they were sent to MDL to do a PCR on the samples. Turns out, they sent the slides of my biopsies, and they actually need the paraffin blocks of my samples. So, now I have to find out if they can send them, and then start the process all over again.

Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

Ok, that is enough of my ramble, but that is my update....

Wow, sounds like progress to me! The IVs don't sound fun. I had my appointment with the LLMD this week and while having my blood drawn, there was a girl getting an IV. It looked like she was there for a while and would be there for a while...I was wondering how long, now you've answered that question, lol. She had a cooler with food in it beside her...that made me nervous, lol. I'm scared of having to have the IVs. :(

Wow, your WEIGHT!!! That's fantastic! You were pretty low there for a while, this sounds much more healthy and fun, lol.

NoGluGirl Contributor
:lol: I have no choice, remember, cameras weren't invented yet when I was young--only B&W available then. :lol:

Too late sweetie! :lol: You're sucked!

:lol: you said thereitness

This is encouraging! I'm sort of glad he thinks this way. I think I wouldn't be comfortable if he JUST treated me on the basis of what ART or BioSET said, but I'm glad he considers them and considers them in relation to the treatments. Did that make sense?! :lol: I finally got a little sleep last night and I think my body doesn't know what to do with it! :lol:

So are you getting the CD57?? :lol:

It could be I guess. Yes, I still have the enlarged duct too. I think my PCP will refer me back to the GI doc anytime I want...I actually don't NEED her to refer me, I can go on my own, but I think if she sends me he won't think twice about retesting me whereas if I go on my own I think he might think I'm being paranoid, lol.

:lol: Ohhhhh goodie, can't wait. :lol:

Wow, sounds like your venture is off to a great start! That's interesting about the B vitamins and that makes sense. I was on the antacids last year for my scopes then again in Dec/Jan for the H.Pylori...no wonder Anna at BioSET said my body was craving the B vitamins, lol.

My head it too big for hats, lol. :lol: Seriously! Hats don't fit me, and well, me and suits don't mix...but I can wear white jeans and tee-shirt, lol. I have a lyme green purse though. :lol:

Dear Donna,

You are probably right to wait for a referral from your PCP. That way, you will get into the GI doctor quicker. Plus, as you said, those specialists have a bad habit of accusing people of being crazy. :angry:

I have seen 3 or 4 GI docs, probably 10 or more if you count the entire team up at IU Med that worked on me. God did that suck. Anyway, it could be that gallbladder or bile duct! You may have had gallstones pass through and mar the inside of it, making it swell.

White jeans and a t-shirt could work. I still have to have a fedora for me! My Mafia is going to be stylish! Afterall, they are cold-blooded, gorgeous women. They deserve the best! :lol: As a member of La Bella Mafia, I have a reputation to uphold. :lol:

Dear Laura,

Yay, no more RMSF! I bet you have felt rough off and on. Those meds can really throw your body through a loop! We were wondering how you were. We have not heard as much from you lately.

I know the misery with Candida can be tough. I cannot take Diflucan. I have no idea if there is anything I could tolerate. I would rather take an herbal approach if possible. I can tolerate Zithromax.

It is one of the few antibiotics that do not make me terribly ill.

Those IVs can really hurt! If you get someone that does not know what they are doing, they can really bruise you! People need to be careful! When you have to have them repeatedly, it can mess up your veins. This is a major issue at times. I am glad your job is good about allowing your treatments. By the way, your new pic is nice!

Sincerely,

NoGluGirl

dlp252 Apprentice

Okay, loaded a slightly different picture of me and my boyfriend Timmy, lol...I actually have a little tinsy hint of a smile. :lol:

Judyin Philly Enthusiast

hi rinne and laura

saw you on

just got caught up on you laura...you sure have been through alot

glad this is helping and your weight is stable.

rinne...what post # is your report of the Rinne Bars

don't want to go and hunt it down

sun is in and out so going out to the garden b/f the rain.

hugs to all the rest of you guys in Rachelville

have a great day

Judy

CarlaB Enthusiast
Also you have said that you were healthy when you had your kids...even if you had Lyme...you said you were in good health. That makes a difference. If you were in the state you're in now the outcome may have been different....thankfully...you ended up having a all these wonderful and healthy kids.

its just way too risky now. I dont even think I would be able to become pregnant or carry a baby full term at this point in time. :(

I think everyone has the right to their own decisions but I also think it would be extremely risky and unwise for someone who is very sick with Lyme...newly diagnosed or even very sick and undiagnosed to go ahead and actively try to become pregnant.

I was in good health when I got pregnant, but I did become symptomatic during three of my pregnancies. Of course, at the time, we thought it was just severe pregnancy symptoms ... it got worse with each pregnancy .... I couldn't even get out of bed most of the time ... couldn't eat either (so Adam fed me bread, LOL). Adam recently read some notes I wrote when I was pregnant with #4 and said he couldn't believe we even decided to have #5. I had dangerously high blood pressure induced by labor after #5, and ultimately, it was that scare that made us not have more.

You've got to remember, I'm talking from a different perspective than you. I think pregnancy is much scarier when you haven't had kids -- on all levels.

I was VERY ill with my last three pregnancies (not when I conceived though), yet would do it all over again. However, I agree that if you're as sick as some of us are, it would be unhealthy for the mother to try to conceive ... I would be more worried about the mother ... in fact, the reason we don't have more kids is because of how sick I get ... recently we talked about how we wanted another, but know that I can't handle it ... plus, we really don't want me to have to get off the meds. We'll just have to push for Morgan to find her hubby in college because there are a lot of baby crazy people in this house!!! ;):lol::lol:

It will be different for each person -- is it worth the risk to the mother's personal health? Is it worth the risk of having a child exposed to Lyme/mercury?

I would NOT take fertility drugs if I had chronic illness as I truly believe that is the body's way of saying it cannot handle it. I got pregnant the first month we tried with each kid :P , no wonder we have so many :lol: !

Looks like we definately have two sides of the story for people to read about here!! :lol: I'm not saying it's a good idea for everyone ... I'm just saying that it's a personal decision ... none of the available info is cut and dry on this. The three autistic kids I know were born to "healthy" mothers. I would base my decision more on the mother's health than the potential health problems to the baby.

I think my kids have an advantage knowing they were exposed to Lyme through me ... if they have mystery health problems, they will have a good idea why. They will also know to take care of themselves because of the potential to develop symptoms.

CarlaB Enthusiast
OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

I really do feel physically great. :)

JUDY - - - - YOU CRAZY LADY - - they're not begging you back because you DO post in here, don't you?????? OF COURSE WE WANT YOU HERE YOU NUT!!!!!!!!!!!!!!!!

That's right, Judy!!

Susan, celiac is exotic ... you do have an exotic illness. :P If it weren't exotic, it wouldn't be so hard to diagnose!

I'm glad you're feeling so much better. I know I feel much better when my iron levels are in range. Congrats on the good numbers!

Also, your off-the-wall stories are one thing we love about you, you will never get kicked out of Rachelville for them ... the only reason they need editing at all is to fit the forum rules!! ;)

That guy was probably the nicest because people high on mj seem to be pretty easy going! Wonder how the pigs fared that summer??? :lol: They were probably the nicest pigs around!

CarlaB Enthusiast
Thanks for all of your support this past year Andrea. :)

Thanks for your encouragement and motherly henliness. ;)

Ditto here, too!

jerseyangel Proficient

Laura--That is very encouraging news! Even though it's difficult and painful at times--aren't you glad they're *doing* something :D I think you're just gonna keep getting better and better. Be patient, and give it time. I'm just so happy that you found these doctors!

Donna--How darn cute were you!!! (Still georgeous, but come on...what a face!)

Rinne, please say your new bars don't have coconut in them.....either way, I wish you much luck with them :)

Andrea--Glad to hear T feels better. Sounds like your family has a banana thing going on. Probably best to stear clear of them with S. ;)

Hi Susie and Judy :D Susie--Such GREAT news about your tests! Yippee!!!

~~~~~~~~~~

I had another water problem 2 weekends ago. Mark and I were out, and instead of ordering tea, I got a bottle of San Pelligrino water. About 15 minutes after I drank it, I got the same nausea that I get with filtered water. It was awful--we were at least 20 minutes from home and I got paniky.

I emailed the Nestle company (who I found out owns them) and still haven't received an answer as to whether they filter the "mineral spring" water.... :angry:<_<

I tell ya--I go nowhere without my own water ;)

rinne Apprentice
Rinne, good luck with your bars...and please keep us updated. So exciting for you!!!! It really is good to have everyone back on.

......

Which leads me to my update:

.....

My original co-infections tests (jan/feb?) were positive for RMSF, but no others. Because of some of the symptoms I was having, the NP re-ran the tests this month. I am no longer positive for RMSF!!!!

.....

Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

That is really good news. :)

The "Rinne Bar" project is lots of fun and I intend on keeping it that way, thanks to everyone for your support. I'll be serving them in the Rachelville Juice Bar.

"Borrelia Buddies" :lol:

Andrea, I watched a friend encourage her grand-daughter to eat a sandwhich, her grandchild really didn't want it. This child's father has major gluten issues and in fact I suspect my friend does too but just won't look at it. It made me think about how as babies we are simply fed, and even when we, as babies, :lol: spit food out our parents keep trying to feed it to us. I think that this over-rides our natural intelligence about what is healthy for us and contributes to a lifetime of eating issues. I don't know why I wrote this, I'm sure you know it already. :)

Back to B Vitamins, until I started it sublingually and had B12shots my nerves were stretched beyond my ability to maintain an even state of mind. :ph34r: I would lose my tiny little mind regularly :lol: (it is only funny now), I felt like I was going crazy. B Vitamins have made a HUGE difference.

I still have to go back, three pages to catch up but I see our Dingo Girl dropped into our Lymecentric :P:lol: thread.

Susan you have been part of my healing process, the laughter we shared helped me want to live and more and more I understand how much the wanting is part of the healing but not only the wanting, the trusting that we can heal. :wub: Big Time.

It was Celia who invited me to Rachelville back about page 75, I am so sorry to hear she seems to have slipped away but then maybe she is just taking a break for a while.

Beverly, I know what you mean about just taking some time to pay attention to what our bodies are saying, it's important and I'm glad you did it but very glad to see you posting again.

Hi Rachel, Patti, Donna...... :D .....and everyone else too.

CarlaB Enthusiast
She replied that no woman in her right mind would raise children :lol: . I had to laugh at that!

Uh, yeah, if you have your right mind when you get pregnant, you certainly lose it once you have kids!! Someone just told me she thought you lost brain cells with each pregnancy! :lol: I've never been accused of being in my right mind!

Adopting a kid is the same in the end as having a kid. I've done both. I'd adopt before I went through IVF ... but that's just me. I just wish someone would walk up to my front door and hand me a baby! ;) That actually happened to a friend of mine ... except she was a waitress and they "gave" her the baby in the restaurant!

CarlaB Enthusiast
I still think Judy is battling lyme and or co-infections......just my opinion though mind you. :)

Didn't she have bull's eye rashes? I think she did ... in that case, she does have Lyme unless they were treated immediately for a month or so, even then, it still could be Lyme because that doesn't always work.

CarlaB Enthusiast
We discussed Babesia in particular....I told him even though my bloodwork was neg. I could have a different strain than what was tested.

He agreed....there are 20 strains of Babesia and we're only able to test for 2 of those strains. So yeah...that leaves 18 strains not even available for blood testing. He said from a clinical standpoint he feels I have Babesia....but its nice to have it confirmed with stuff like ART and BioSET.

I was also clinically diagnosed. The drenching sweats, air hunger, and heart palpitations I get are from the babs ... they're symptoms that I get all the time but don't bother me as much as the fatigue, so I don't often mention them.

Not only do we not test for all of them, but like in Lyme testing, there are also false negatives because they check for immune reactions rather than the bugs themselves.

dlp252 Apprentice
I had another water problem 2 weekends ago. Mark and I were out, and instead of ordering tea, I got a bottle of San Pelligrino water. About 15 minutes after I drank it, I got the same nausea that I get with filtered water. It was awful--we were at least 20 minutes from home and I got paniky.

I emailed the Nestle company (who I found out owns them) and still haven't received an answer as to whether they filter the "mineral spring" water.... :angry:<_<

I tell ya--I go nowhere without my own water ;)

Wow!!! That's just amazing to me! A little scarey too, I might add. Thanks for the compliment, lol!!! I have one childhood photo which I'll post later this weekend...I have the most HUGEST smile on my face...I'm actually unrecognizable. :lol:

CarlaB Enthusiast
My head it too big for hats, lol. :lol: Seriously! Hats don't fit me, and well, me and suits don't mix...but I can wear white jeans and tee-shirt, lol. I have a lyme green purse though. :lol:

I agree, no suits for me. We can be like the red hat ladies and all pick out our own hats ... that way there will be some fun variety!

I have Lyme green nail polish. :lol: Seriously.

Laura, I'm glad things are going better for you and that you're making progress. :)

CarlaB Enthusiast

There's a funny cartoon on Lymenet. Go to Lymenet's forum, general support, "remember this" is the name of the thread.

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    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
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