Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I had this happen several years ago with some feelings that I had been unable to cope with the first time around ... I was too weak to deal with them at the time and boxed them up. When I was emotionally stronger, they came back for me to deal with more completely.

Carla that makes sense,

I couldnt deal with everything going on cuz I was too sick at the time. The relationship was falling apart but I had no strength to really deal with it or try to make things better. I figured it was for the best anyway because I was sick and noone knew why. I could never really deal with it or put it behind me or move on because ALL of my focus since then has been on my health and getting answers. I couldnt do the normal things that people do to move on when a relationship ends. I couldnt go out with my friends, have fun, meet new people...none of it. I was at home...by myself, unable to work and really scared. I wanted desperately to do the normal "healing" things but my body wasnt letting me. :(

Maybe everything is still "boxed up" and its coming out when my body is stressed.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
CarlaB
Posted

Patti, mine also had to do with Mom issues and were issues that were over 20 years old!! For me it was getting emotionally strong enough as this happened before my health problems, but I think you're right that it does happen as part of the physical healing as well.

Rachel, I have a three month old check statement ... I do the same thing. I feel so lazy, but it takes tremendous effort to do the smallest task. It's not that balancing the checkbook is difficult, it's taking the time to do it. That's why my kids have compensated for that by filling in their own activity papers ... if they wait for me, they know it won't get done. This actually has been good for them in many ways. They are all very independent and capable. Truthfully, if I were to drop dead tomorrow, the only thing my family would miss besides my cooking is my company. They are all very capable people.

I'm not a worrier ... but I do tell my kids that my first job is teaching them to be good people, if we can be friends and get that done, it's a bonus, but it's not absolutely necessary. In the end, they respect me for that.

Your mom is just worried ... and since you're there, she can see all the little things. When I get upset I vacuum ... well, I did when I had more energy ... If I couldnt' control the situation, at least I could control my environment. Your mom probably thinks that if she can better control the circumstances, they will be resolved ... somehow if you pay your bills on time, you will get better. :P

rinne Apprentice
rinne
Posted

Carla, I think that makes good sense too.

CarlaB Enthusiast
CarlaB
Posted
Carla that makes sense,

I couldnt deal with everything going on cuz I was too sick at the time. The relationship was falling apart but I had no strength to really deal with it or try to make things better. I figured it was for the best anyway because I was sick and noone knew why. I could never really deal with it or put it behind me or move on because ALL of my focus since then has been on my health and getting answers. I couldnt do the normal things that people do to move on when a relationship ends. I couldnt go out with my friends, have fun, meet new people...none of it. I was at home...by myself, unable to work and really scared. I wanted desperately to do the normal "healing" things but my body wasnt letting me. :(

Maybe everything is still "boxed up" and its coming out when my body is stressed.

And with TheDave there giving you much needed emotional support, you are emotionally ready to deal with things again! Just think how different things will be for you one year from now!!!!

Carla, I think that makes good sense too.

Thanks ... it's taken six kids for me to be able to overcome my controlling, OCD tendencies!!! :lol::lol:

jerseyangel Proficient
jerseyangel
Posted
... it's taken six kids for me to be able to overcome my controlling, OCD tendencies!!! :lol::lol:

:lol: I guess I'm 4 kids short then--I still am controlling and OCD!! :ph34r:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Sounds to me like a major herx effect, which they would not have predicted if they weren't looking at Lyme, did you talk to your doctor about this, was this when they said antibiotics were a problem for you?

Every time I took antibiotics I felt worse but I dont know if I was herxing or just reacting to something in the pills. Its hard to know because I've felt bad on various supplements and meds for different reasons. I reacted badly to my thyroid pill at one time because of the purple dye....so I dont know what was going on exactly with the antibiotics.

Metronidazole was the worst though....maybe it was more noticeable because I was on my restricted diet and back at work and functioning fairly well before I started taking it. The other times I had taken antibiotics or meds I was pretty much already non-functioning and in pretty bad shape (eating a normal diet) so its possible I couldnt really notice a HUGE difference....just that I felt a little crappier than normal.

I went on the Metronidazole because my stool test detected C-Diff toxins. I had to take it for 2 weeks....it was sometime near the beginning of the year. Here was my post about it.

Does anyone know if Metronidazole (genneric for Flagyl) is gluten free? I've been on it 3 days for a C-Diff infection and I'm getting alot of my old symptoms back. Dont know if its related to the infection or if there could be gluten in antibiotic. All I know is my stools are no longer formed, I've lost weight and I'm getting bruises and depression. I'm really scared and just want to make sure its not gluten

Does it sound like I was herxing?? Patti had called the company and there was no gluten in the pills. I had to call in sick that day. I didnt even have the strength to check on the pills myself. I remember waking up and the whole room was spinning. When I stood up I was nauseus and I had to hold the walls because I was dizzy and losing my balance. The whole two weeks I had loose stools and no energy.

I had read that Flagyl is nasty and the side effects are so bad that many people cant tolerate it at all. Is this not because of the drug itself but because of what they might be killing with it?? :unsure:

CarlaB Enthusiast
CarlaB
Posted
:lol: I guess I'm 4 kids short then--I still am controlling and OCD!! :ph34r:

LOL!!! :lol::lol: With six, you just have to let go!!! You CAN'T do it all!!!! You can juggle it and direct it, but you can control it or do everything!!! Now, if Susan saw my house, she'd say I was a Stepford Wife ... so OCD is pretty subjective!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dlp252 Apprentice
dlp252
Posted
I don't really have a point ... it's just more scientificness that might not be related to anyone here!!! :lol::lol::lol: I think I'd really like working at Starbucks .... I don't know many people here yet, it'd be a great way to meet them!!

No point needed here, lol...I just like reading your posts (along with everyone else's)! Interesting conversation you had with that doc!

CarlaB Enthusiast
CarlaB
Posted

Rachel, I don't know as much about this as you and Rinne, but it sounds like herxing to me.

BTW, did you go back???? :ph34r::ph34r::ph34r:

dlp252 Apprentice
dlp252
Posted
you should be optimistic- whether or not you feel the effects today you felt some yesturday - so thats a great sign. You just have to hope that with each session the relief lasts for longer periods of time.

I think it sounds like good news donna

Yep, this is exactly why I choose to be optimistic. :P

I'm 43 ... I was just judging by the fact that your youngest is younger than my youngest ... of course, if it weren't for my health problems, that wouldn't be the case!!! :D

Ha, I'm 51, but never been a mother except to two little dogs, lol...wouldn't know how to be the mom here. :lol:

rinne Apprentice
rinne
Posted
I had read that Flagyl is nasty and the side effects are so bad that many people cant tolerate it at all. Is this not because of the drug itself but because of what they might be killing with it?? :unsure:

Flagyl is used to treat Lyme Disease. Herxing, YES, big time.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Your mom probably thinks that if she can better control the circumstances, they will be resolved ... somehow if you pay your bills on time, you will get better. :P

OMG...she actually does think like this. She thinks if everything is running smoothly I'll feel alot better and not be so sick....and I will heal.

She says she cant control whats going on with my health but she CAN control other things like making sure insurance paperwork is sent in, bills are getting paid, there is oil in my car, etc.

Everything is so OVERWHELMING for me though.

My mom and her hubby are taking a huge burden off of the medical bills and my Bioset treatments. My ex that I own my home with is taking a huge burden off the utilities and mortgage. I really shouldnt be as stressed because they say the finances will be taken care of no matter what but I still stress about it. I'm used to taking care of myself. My ex does not even live in the house but is paying the bills....it stresses me out.

Even though all of these worries are taken care of....I *still* cant seem to do my own part and just at least get things done on time. It sucks and I get frusterated with myself. I can spend alot of time online, researching and somehow understanding things and retaining info but yet my bills seems so complicated?? :unsure:

jerseyangel Proficient
jerseyangel
Posted

Rachel,

I think the people in your life do understand how overwhelming this is for you, and are trying to help in the only concrete way that they can.

By taking some of the everyday, practical worries from you, they probably feel that you can concentrate on doing your research and other things you need to do to get well.

It's hard for the people who aren't us--just in a different way :D

I also find it hard to sit down and pay bills and balance the checkbook. What's up with that? I just leave it all to the last possible minute. I mean, all I have to do is write the checks--my husband is the one putting the money in there :ph34r:

CarlaB Enthusiast
CarlaB
Posted
I can spend alot of time online, researching and somehow understanding things and retaining info but yet my bills seems so complicated?? :unsure:

ROFLMAO!!! :lol::lol::lol: That is me!!

Wow, your ex is generous considering he's your ex! I mean, parents are usually willing to do what they can, but ex-es usually aren't. You'll get it all together. You ARE making progress. Where's Andrea? This mothering thing is her job!! ;):lol: Seriously, you are making progress and you will get better. It'll be a lifelong awareness, but you'll never be as bad as you are now ... you'll find out the signs you are weakening, and adjust and not come to this level again. I'm saying that for my own benefit, too. If we weren't so strong, we'd be dead.

dlp252 Apprentice
dlp252
Posted
This is the stuff that worries my mom....because I dont take care of anything in timely fashion anymore. It seems like it would be easy....to just get out the bills and pay them. But its not easy anymore. I cant explain it but some things just arent so easy anymore. :(

Wish I didn't understand this statement so well. :blink:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
And with TheDave there giving you much needed emotional support, you are emotionally ready to deal with things again! Just think how different things will be for you one year from now!!!!

I dont know if I'm emotionally ready for dealing with stuff yet...I think I'm just so focused on my health that I dont think about much else. Its actually gotten worse since I got diagnosed. I hope everyone is right about things being so different for me a year from now. I hope when the holidays roll around next year I can eat what everyone else is eating and feel the same joy I used to feel during the holidays....before I got sick. That would be more than awesome. :D

:lol: I guess I'm 4 kids short then--I still am controlling and OCD!! :ph34r:

:lol::lol:

BTW, did you go back???? :ph34r::ph34r::ph34r:

Are you kidding?? I would still be lost in the pages. :lol::lol:

Nope...this was before the OMG thread. I posted a topic desperately asking for help...I wanted to know if the Metronidazole was gluten-free....Patti came to my rescue. :)

Flagyl is used to treat Lyme Disease. Herxing, YES, big time.

Well...all I know for sure is that since then I'm terrified of antibiotics. I figured if this is how the Dr.'s planned on treating the Lyme my life would suck from here on out. I felt the hugest relief when the Dr. said NO antibiotics for this Lyme girl. :D

I just think its a bad idea for people with a chrocic Lyme infection...its gonna cause some serious side effects and my Dr. knew it would make me really sick. The entire time I was on Metronidazole I felt like I needed to be back on disability. If I was being treated with antibiotics I think I would not be able to work. Going to work is good for me....I feel like its better for me on so many levels..to be a part of everyday normal life. Disability was a horrible experience. I used to look out the window and watch people going to and from work....doing everyday activities and I would cry because I wasnt doing those things. Now I am and I'm happy. :)

CarlaB Enthusiast
CarlaB
Posted
I dont know if I'm emotionally ready for dealing with stuff yet...

You might not think you are, but if it's happening, your body thinks differently. You are a lot stronger than you think you are ... it's apparent here.

I hope everyone is right about things being so different for me a year from now. I hope when the holidays roll around next year I can eat what everyone else is eating and feel the same joy I used to feel during the holidays....before I got sick. That would be more than awesome. :D

:lol::lol:

Don't be disappointed if you still have food intolerances, they most likely will be a lot less severe and a lot less numerous ... the really important thing will be that you will FEEL GOOD!!! You'll be able to partake in some CHAMPAGNE!!!

dlp252 Apprentice
dlp252
Posted

Okay finally caught up....wasn't easy either...lost my computer connection twice, lol. Anyway, now I gotta go, lol. Need to learn a choir song before tomorrow...haven't listened to it until about 20 minutes ago. :o The small group I'm in is singing tomorrow too, but fortunately I KNOW that song. I do have Mission Impossible 3 to watch...my mom loaned it to me, so that's my afternoon/evening...watching MI3 and learning a completely foreign choir song, lol. :lol:

jerseyangel Proficient
jerseyangel
Posted
Okay finally caught up....wasn't easy either...lost my computer connection twice, lol. Anyway, now I gotta go, lol. Need to learn a choir song before tomorrow...haven't listened to it until about 20 minutes ago. :o The small group I'm in is singing tomorrow too, but fortunately I KNOW that song. I do have Mission Impossible 3 to watch...my mom loaned it to me, so that's my afternoon/evening...watching MI3 and learning a completely foreign choir song, lol. :lol:

Wow Donna--Good luck with all that! I'm sure the song will turn out beautiful when you all are singing it. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I also find it hard to sit down and pay bills and balance the checkbook. What's up with that? I just leave it all to the last possible minute. I mean, all I have to do is write the checks--my husband is the one putting the money in there :ph34r:

Patti....I'm the same except I wait till the creditors are calling me and I'm so annoyed that I HAVE to do something about it. :ph34r:

I just dont get it because the money is there.....I'm just not writing out the checks. I end up having to pay all these late fees.....probably have spent thousands in late fees the past 4 years....and its totally unnecssary. Now I will have to build up my credit again....I used to be so proud of my credit report.....now its ruined because of brainfog and laziness. :(

Wow, your ex is generous considering he's your ex! I mean, parents are usually willing to do what they can, but ex-es usually aren't.

My ex and I have a "rare" friendship...its more like we are best friends rather than exes. Its one of those friendships that will last a lifetime....we will always be each others biggest supporter...no matter what. We broke up more than 6 years ago but we talk everyday....there is NO romance or anything like that. We are best friends. :D I know its kind of "out of the ordinary" but its just natural for us.

jerseyangel Proficient
jerseyangel
Posted

Rachel--I've heard you say that about your ex before--that is so nice for you both. It sounds like you are soulmates. :D

I can't let the bills go the point that you do cuz my husband would absolutely flip out! :o I hate to ask him to do it, he works hard enough already. It's the least I can do--and I do mean the very least :P I just don't understand this *inertia*. It's strange that several of us have it. :unsure:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
the really important thing will be that you will FEEL GOOD!!! You'll be able to partake in some CHAMPAGNE!!!

WOOHOO!! :D

Just to feel semi-normal would be the hugest gift of all....PARTAKING would be a bonus!! :lol:

Okay finally caught up....wasn't easy either...lost my computer connection twice, lol. Anyway, now I gotta go, lol. Need to learn a choir song before tomorrow...haven't listened to it until about 20 minutes ago. :o The small group I'm in is singing tomorrow too, but fortunately I KNOW that song. I do have Mission Impossible 3 to watch...my mom loaned it to me, so that's my afternoon/evening...watching MI3 and learning a completely foreign choir song, lol. :lol:

Donna....it actually sounds fun and relaxing. I LOVE singing....although I dont exactly have a "made for choir" voice. :lol:

Is it church choir? When I was a kid I loved singing the church songs. I went to St. Martins...its that Catholic School right next to Camino Medical. My favorite part about going to church was singing....and I was LOUD. We used to actually get a grade for singing and I always got a "C" or worse. :ph34r:

I didnt think that was very fair cuz obviously I showed great enthusiasm for it. :lol:

jerseyangel Proficient
jerseyangel
Posted

I love to sing, too--but truth be told, I can't carry a tune in a bucket :lol:

I sing a lot in the car.... :rolleyes:

AndreaB Contributor
AndreaB
Posted
I also began using SLS-free products (shampoo and soap)

Since these changes, the eczema has stayed gone--and I wasn't really looking to get rid of it per se--I was trying to figure out my food intolerance/intestinal issues. This was pretty much a nice side effect of that :D

Hmmmm, I wonder about that. Although I was using sls free stuff (I think) last year. Seems my flareup is always in the fall.

Where's Andrea? This mothering thing is her job!! ;):lol:

I'm here. Rachel gets a call tomorrow, I'll mother then. :P

I have been busy booking flight/hotel/car for going down to see dad Thanksgiving weekend. We will all be going down....leaving the evening of the 23rd and coming back in the wee hours of the 28th. Talked to dad for a few minutes this morning and he agrees with us coming down over that weekend and Mitch will only have to take one extra day off w/o pay.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel--I've heard you say that about your ex before--that is so nice for you both. It sounds like you are soulmates. :D

Yes....we are soulmates....destined to be the very best of friends. This is how its been since I was 20 years old. We look out for each other. :D

I can't let the bills go the point that you do cuz my husband would absolutely flip out! :o I hate to ask him to do it, he works hard enough already. It's the least I can do--and I do mean the very least :P I just don't understand this *inertia*. It's strange that several of us have it. :unsure:

Yeah...my mom flips out. Here they are trying to help me and I'm sitting back accumulating late charges. I NEED to force myself to not allow this to happen anymore.

I noticed that alot of "symptom lists" mention an inibility or lack of desire to perform simple tasks. They always metion bills and balancing checkbooks as an example of this. Even my Dr. had asked me about it once.

I obviously have the ability to perform tasks and to think when I *want* to or when I *need* to. What I notice is that when I think of paying my bills I get immediately drained...literally exhausted. I think having to focus on anything finacial has become a huge reminder of what this disease has done to me. Its a reminder thatn nothing is the same. Finances are now something to worry about and there is no money for FUN stuff. It doesnt matter how much money is in the bank...I'm always worried now that it might run out....or that it will never be enough to cover all the costs of getting better.

I think I just dont want to have to think about it at all. I just equate bills with stress and I try to tune it out.

Doing research and working toward getting better brings hope rather than worry so I think I have more energy for doing things that bring out positive feelings.

I have been busy booking flight/hotel/car for going down to see dad Thanksgiving weekend. We will all be going down....leaving the evening of the 23rd and coming back in the wee hours of the 28th. Talked to dad for a few minutes this morning and he agrees with us coming down over that weekend and Mitch will only have to take one extra day off w/o pay.

Andrea....YAY!

I'm so glad you are all gonna do this together. I know its stressful making all the arrangements but its important and you'll be happy you did it. Your dad sems like hes happy you're coming for Thanksgiving too. :)

I'm here. Rachel gets a call tomorrow, I'll mother then. :P

I'll look forward to it. :)

Actually...I will call...my weekend calls are free. :D

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.