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Omg...i Might Be On To Something

Rachel--24

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dlp252 Apprentice
dlp252
Posted
Yah, but if you have lyme you have an even better reason to be messed up. I'm sure the mercury isn't helping. My doctor blames my mercury for my few intolerances. I don't have any other issues that I know of.

Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

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Rachel--24 Collaborator
Rachel--24
Posted
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rinne, are you trying to make me cry? This was so beautiful what you wrote it and went straight to the heart and made me tear up, not only because I am so sorry you are going through this day in and day out, but that I can completely relate to being in this place, feeling this way. You said it very well, as always.

Rinne...ditto to what Julie said. I also can relate to everything you wrote....its hard but we just get through the days because we know theres a light at the end of the tunnel.

I'm really frusterated and sad about your experience with Hoffman. Its such a disappointment....I've been there as well...putting my faith in someone and then getting let down. :(

I hope it doesnt turn out this way with my new Dr.....I still dont know what might happen....its a scary time for me... all this waiting and not really knowing whats ahead for me.

I believe what Julie wrote. When one door closes another one opens. I hope you are feeling a little better now...things like this can really throw us off. You're still a Laughing Lyme Lady and you are still so in tuned with your body. You dont need him because you've obviously already surpassed him in your knowledge of your own illness.

For some reason I had thought that he was an LLMD...maybe that will be your next step?? I think both of us need someone who is really knowledgeable....anyone who isnt qualified will just waste our time. <_<

CarlaB Enthusiast
CarlaB
Posted
Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

Judging by the article Rinne posted, it sounds as if mercury and Lyme often go hand in hand ... and that would certainly tire your adrenals!!

dlp252 Apprentice
dlp252
Posted

My mailbox is down the street, so I only pick it up every 4-5 days, and that's only if there is an open easy parking space in front of it. The box has been so jammed that the lock fell off twice because the mechanism couldn't move, so when I put my key and and turned, it came unscrewed! I have 3 months worth of bank statements to balance! Rachel, I so understand about that and am so sorry you have that going on too.

Carla - our choir practice starts at 7:00 also, and I haven't been able to go in a couple of months now. I did get a nice email from the choir director yesterday who said I can come back anytime I feel up to it. And, he's being very patient and understanding about me just showing up on Sunday to sing...I basically learn the song during the early Sunday rehearsal.

Rachel - I think there are at least two LLMDs in our area...I pulled their names off one of the websites Rinne posted...the link is at work though. I thought originally I might ask to see your doctor, but maybe I should see one of the LLMDs instead, lol.

Oh, and I actually called the BioSET office today, but no one answered...then I sent them an email. Sometimes it takes me a while to get around to something. :ph34r:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

Donna...is it Dr. Rick you're talking about?? If it is...he's probably thinking "Oh God...not another one of *those* girls." :lol::lol:

I think I annoyed him because I was always diagnosing myself. He never said it *couldn't* be these things...just that there were other things that were more likely. Same thing with Lyme....he thought he would find a parasite or something because he usually does...but not in *my* case. They were "stupified" by me....couldnt figure it out....I am just too darned complicated. :rolleyes: Well....HA...I was RIGHT all along. :P

Lyme Clan B)

dlp252 Apprentice
dlp252
Posted
Judging by the article Rinne posted, it sounds as if mercury and Lyme often go hand in hand ... and that would certainly tire your adrenals!!

Yep, that's what I'm thinking too. I can't imagine what else it is...but he's really certain I have bugs, lol. He said he'd very VERY surprised if I didn't have them...I felt like saying "get ready to be surprised". I took these tests last year and they showed nothing, but he thinks the difference in lab processing will make a difference, lol. Might, could, maybe...we'll see.

Donna...is it Dr. Rick you're talking about?? If it is...he's probably thinking "Oh God...not another one of *those* girls." :lol::lol:

I think I annoyed him because I was always diagnosing myself. He never said it *couldn't* be these things...just that there were other things that were more likely. Same thing with Lyme....he thought he would find a parasite or something because he usually does...but not in *my* case. They were "stupified" by me....couldnt figure it out....I am just too darned complicated. :rolleyes: Well....HA...I was RIGHT all along. :P

Lyme Clan B)

:lol: Yep, doctor Rick...ha, see my post above...that's exactly what he thinks...it's a parasite! :lol::lol: I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel - I think there are at least two LLMDs in our area...I pulled their names off one of the websites Rinne posted...the link is at work though. I thought originally I might ask to see your doctor, but maybe I should see one of the LLMDs instead, lol.

Oh, and I actually called the BioSET office today, but no one answered...then I sent them an email. Sometimes it takes me a while to get around to something. :ph34r:

Cool...Donna. Hold onto that info!! I might be needing it.. ;) I'm glad to hear there are some LLMD's here...I figured there must be....but had no idea how to *find* them. :unsure:

I would be so curious to see what the Bioset testing shows is wrong with you. I think you would like the lady...shes really bright....as in intelligent. Thats what I like....healthcare people who know what the heck they're talking about. B)

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CarlaB Enthusiast
CarlaB
Posted

Donna, I have three months, too. I just show up on Sunday, too, but we don't have a practice before Mass ... I totally wing it, standing in front of a mike, standing out with my flute. If it's bad, it's bad. :P

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

:lol::lol:

Did they look at you like this?? :rolleyes:

OMG...your post made me laugh....I needed that! :D

I take it back....they *did* find something in my stool test. It wasnt a parasite though...it was that C-Diff. infection....BUT the C-Diff may have been overgrown and maybe creating toxins...but it wasnt what was making me sick. C-Diff causes serious "D"....and I did NOT have any "D". I kept pointing that out to Dr. Rick...."How could I have C-Diff...I read about it on the internet and I dont have any of those symptoms?" :huh: Yup...I think he probably dreaded seeing me...I was the "internet girl". :lol::lol:

miamia Rookie
miamia
Posted

Rinne-

I am so sorry to hear about your experience today. I feel your frustration- in terms of the appointment and in terms of everyday living. Its the worst feeling when you can feel your old self almost being pushed out to make room for the "sick you" because the sick you is so powerful at times- but you just have to fight it. ( I hope this makes sense)

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Ahhh.. so its alot.

The other test where you have to take antibiotics first we are waiting on becasue I am on the diflucan right now and we are gonna have these done first. My doctor is very cool though- he really does respect me as a patient he said if we do go ahead with that test he would rather give me the antibiotics through a shot or something else becasue my system is so sensitive and taking them orally will just be so hard on my stomach.

Ok so thats most of what I can remember right now.

Miamia

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

I'm assuming Dr. Rick does believe that mercury can cause these horrid symptoms.....he *did* send me to the new Dr. afterall. Or maybe he was just trying to get rid of me. :lol:

dlp252 Apprentice
dlp252
Posted
Donna, I have three months, too. I just show up on Sunday, too, but we don't have a practice before Mass ... I totally wing it, standing in front of a mike, standing out with my flute. If it's bad, it's bad. :P

HA, at least you read music, lol. :lol: I don't. :ph34r: Our service starts at 9:00 but we have to be there at 8:00 to rehearse. :blink:

:lol::lol:

Did they look at you like this?? :rolleyes:

OMG...your post made me laugh....I needed that! :D

I take it back....they *did* find something in my stool test. It wasnt a parasite though...it was that C-Diff. infection....BUT the C-Diff may have been overgrown and maybe creating toxins...but it wasnt what was making me sick. C-Diff causes serious "D"....and I did NOT have any "D". I kept pointing that out to Dr. Rick...."How could I have C-Diff...I read about it on the internet and I dont have any of those symptoms?" :huh: Yup...I think he probably dreaded seeing me...I was the "internet girl". :lol::lol:

Yep, that's exactly how he looked at me, lol...I haven't brought up the internet thing too much, but I think he "know", lol. :lol: I DO have the D, but they looked for C.Diff in February AND H.Pylori. Maybe it's kind of like the adrenal thing...the labs HN uses probably look at more things. I'm really interested to see what it shows. :P

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Ahhh.. so its alot.

The other test where you have to take antibiotics first we are waiting on becasue I am on the diflucan right now and we are gonna have these done first. My doctor is very cool though- he really does respect me as a patient he said if we do go ahead with that test he would rather give me the antibiotics through a shot or something else becasue my system is so sensitive and taking them orally will just be so hard on my stomach.

Ok so thats most of what I can remember right now.

Miamia

Oh Mia, YAY!!!! That sounds really encouraging to me!!! Yay yay yay!

I'm assuming Dr. Rick does believe that mercury can cause these horrid symptoms.....he *did* send me to the new Dr. afterall. Or maybe he was just trying to get rid of me. :lol:

Yep, I think we just haven't satisified his parasite thing yet. :lol: Once the parasite thing is done with, I'm sure he'll start considering the mercury. :lol::lol: THe PT guys are convinced I'm not doing my exercises and stretches cuz I'm not getting better...I'm doing the stupid things 2-4 times a day! :blink:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test.

Ok...so it took me a minute to get this into my "stupified" brain. :ph34r:

I'm thinking...what does Celiac Disease testing have to do with Lyme?? :unsure:

:lol::lol:

Did you type C.D. and it came out Celiac Disease or am I losing it right now? :huh:

It sounds like your appt. went really well. :)

I'm so happy for you mia...and that your Dr. is pursuing this diagnosis for you. I hope the new tests give more specific answers. I'm keeping my fingers crossed for you. :)

I'm anxiously awaiting your results. Good thing I stopped my nail-biting habit or by now there would be nothing left. :P

I agree about holding off on the antibiotics for now. :)

rinne Apprentice
rinne
Posted
Lyme Clan B)

:lol:

:lol: Yep, doctor Rick...ha, see my post above...that's exactly what he thinks...it's a parasite! :lol::lol: I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

:ph34r::lol::lol:

Rinne-

I am so sorry to hear about your experience today. I feel your frustration- in terms of the appointment and in terms of everyday living. Its the worst feeling when you can feel your old self almost being pushed out to make room for the "sick you" because the sick you is so powerful at times- but you just have to fight it. ( I hope this makes sense)

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Thank you Miamia, :) I am glad that your appointment went well and hopefully further testing will clarify this.

Hoffman has treated eight other Lyme patients so no he is not a Lyme Literate doctor although he told me it was an interest of his, that he attended Lyme conferences and hung out with Lyme doctors. I think he is just big time into testing and I am not at this point, also a little distrusting of these tests since he didn't seem to figure the ones he had me do into his thinking once he saw the negative. I don't think he even looked at the bands. :rolleyes:

miamia Rookie
miamia
Posted
Ok...so it took me a minute to get this into my "stupified" brain. :ph34r:

I'm thinking...what does Celiac Disease testing have to do with Lyme?? :unsure:

:lol::lol:

Did you type C.D. and it came out Celiac Disease or am I losing it right now? :huh:

It sounds like your appt. went really well. :)

I'm so happy for you mia...and that your Dr. is pursuing this diagnosis for you. I hope the new tests give more specific answers. I'm keeping my fingers crossed for you. :)

I'm anxiously awaiting your results. Good thing I stopped my nail-biting habit or by now there would be nothing left. :P

I agree about holding off on the antibiotics for now. :)

I put C D and it put in celiac. Tricky little thing!!

I know I ahte that I ahve to wait til monday to get the blood work done becasue tomorrow is thanksgiving. Holidays are so inconvinent!!

dlp252 Apprentice
dlp252
Posted
I put C D and it put in celiac. Tricky little thing!!

I know I ahte that I ahve to wait til monday to get the blood work done becasue tomorrow is thanksgiving. Holidays are so inconvinent!!

I think the only one more anxious to hear about your results than us is YOU, lol. They're keeping us all waiting! :P

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
It's nice to have those patient people in our lives who are willing to work with us and support us any way they can. He'd see me at band when I was really sick and losing so much weight and just come over and give me a hug. Your "oboe player" is your mom. :)

We'll all get better and be better people for having had this experience, for suffering and not succumbing to the illness, for the extended commitment to get better, for the detachment from the material world, and for the friendships we've made here.

Thanks Carla...you guys all made me feel better about this. :):wub:

My mailbox is accross the stret and its a HUGE chore for me to get the mail. I've been good about it lately...I get it every weekend. Well actually I get it on Monday morning.....when I'm headed back to work and my Mom's. I kind of do a drive-by....just throw it all into a bag and into the trunk it goes.....with the previous weeks mail....and the weeks before that... :ph34r:

When I was on disability I sometimes wouldnt get it for up to 3 weeks!! I would get notes that there was no room left in the box...that they could no longer deliver my mail. I was ok with that.....no mail is fine with me. :P

miamia Rookie
miamia
Posted

Rachel-

I hate the idea of you being home alone on Thanksgiving. I was really down but tonight and really thought about wanting to play hookie from the festivities but I know my family wants me there and I love my family especially mmy neice and nephew sometimes they are the only things in this worldthat make me want to keep going. My family is very laid back- and no one wears any perfume. My mom is very allergic to all things like that. So if you want I'll leave the computer on and you can eat with us!!! I'm cooking all my food anyways so you don't have to feel bad about not being able to eat what everyone else is. And they are all very understanding about my food situation . I swear my 7 year old nephew understands it more then most adults- the other day he was eating pizza and he was like" you can't have this right becasue of the wheat and cheese?" hes amazing.

So we eat early but your invited- via internet

Miamai

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Holidays are so inconvinent!!

Yeah...stupid holidays!!

Everyones buying food ALL day long...thats ALL these people who come into my store are doing. Buying FOOD!! Imagine that... :rolleyes:

How irritating. Ummm lets see.....what will I be eating tomorrow?? Potato or beef or popcorn or apples or ice cream??? Maybe I will have ALL of them. :rolleyes:

miamia Rookie
miamia
Posted
I think the only one more anxious to hear about your results than us is YOU, lol. They're keeping us all waiting! :P

Thanks Donna-

I should let the people at the lab know they have to put a rush on my tests becasue its not just me there keeping in suspense.

Yeah...stupid holidays!!

Everyones buying food ALL day long...thats ALL these people who come into my store are doing. Buying FOOD!! Imagine that... :rolleyes:

How irritating. Ummm lets see.....what will I be eating tomorrow?? Potato or beef or popcorn or apples or ice cream??? Maybe I will have ALL of them. :rolleyes:

Rachel-

I would die I worked in a cafe even after I got sick and giving people all this good food I coulden't eat wasen't the hard part it was that I know they didn;t appreciate how lucky they were to be able to go somewhere and order anything and not have to worry what the exact ingredients were or what had come in contact with it during preperation!!

dlp252 Apprentice
dlp252
Posted
Thanks Donna-

I should let the people at the lab know they have to put a rush on my tests becasue its not just me there keeping in suspense.

Yes, please do! :lol:

rinne Apprentice
rinne
Posted
When I was on disability I sometimes wouldnt get it for up to 3 weeks!! I would get notes that there was no room left in the box...that they could no longer deliver my mail. I was ok with that.....no mail is fine with me. :P

That made me laugh out loud, thanks Rachel.

And Miamia, for sure you should tell them that, "people want to know". :)

AndreaB Contributor
AndreaB
Posted
Yep, he really wants to find out why my adrenals are so fatigued and why my immune system isn't working right...but he looked like this :unsure: when I mentioned I thought it was mercury (didn't even mention Lyme although I had planned to... the :unsure: made me think twice about it, lol).

:lol::lol: They're going to refuse to treat any more "internet" people pretty soon.

I think the PT guys are already rolling their eyes at me, lol...my neck isn't getting better...and I said one day "I bet it won't get better until I get the mercury and lyme out of my body"! :lol::lol::lol:

:lol::lol:

Totally agree with that one. :)

I would be so curious to see what the Bioset testing shows is wrong with you.

Yep, me too.

:lol::lol:

Did they look at you like this?? :rolleyes:

:lol::lol:

Ok so I had this doctors appt today and I have to say I feel it went well. We talked about a lot of things. In terms ofthe lyme he was very open to further testing and he definitly seemed pretty knowledgable about it. So On Monday I am going in to get a bunch of blood work up done - I am redoing the original igenix test becasueits been a while and they recommending retesting. I am also getting the celiac disease 57 Stricker test done- which is a more sensitive lyme test. The last thing I am having done is the Thrombotic marker panel -

Sounds good Miamia. Keep us posted, as usual. I'm glad he's willing to do the extra testing.

I think the only one more anxious to hear about your results than us is YOU, lol. They're keeping us all waiting! :P

Don't you know it.

I would get notes that there was no room left in the box...that they could no longer deliver my mail. I was ok with that.....no mail is fine with me. :P

:lol::lol:

Thanks Donna-

I should let the people at the lab know they have to put a rush on my tests becasue its not just me there keeping in suspense.

Yes do. Come on labs hurry it up! :P

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
So we eat early but your invited- via internet

Mia,

You are sooo sweet. Thanks for making me smile. :) That was very kind of you....I'll be ok though...I'm a tough cookie. I just know this is going to be my last holiday where I dont feel "festive"....I just feel like things are gonna get better. Tomorrow is only one day...in the future there will many enjoyable holidays that I'll participate in. :)

What a great group of friends I have here. :wub:

What a cool nephew you have.....I agree....kids are amazing. :)

DingoGirl Enthusiast
DingoGirl
Posted
Ha...I happened to ask the receptionist while I was there for my PT appointment how long I should give the melatonin to work...she said "um, should work right away", lol...then she called one of the dcotors who upon hearing that I've been waking up at 12:30 for 2 weeks and mostly not going back to sleep, said "Um, she needs to see one of us". :lol: So they fit me in with Dr. Rick.

:huh: Donna....I must say, you are a very cheerful insomniac! I can't believe you are functioning on this little sleep.....I have done it and just cried all the time......

Yes, holidays are inconvenient and they DO suck. Harumph! :angry: Here's a first, I just made a giant thing of homemade stuffing.....it is baking in the oven. It's so crazy to me, spending all this money on all this food......the store was PACKED, Rachel, you must have been out of your mind at the heinosity of it all today.

Miamia....good news about your appointment! And so nice to invite Rachel to your TG. :)

Rinne...poetic and eloquent, as ever. I truly FEEL your pain when you write about it.....sorry about that disappointing doctor.

Carla....I don't even KNOW how you can get up there and play the flute in front of all those people without practicing. You must have lots of natural talent. ;)

Well, have to figure out what to do with this turkey breast now, adn then homemade cranberry sauce.

HEINOUS!!!!!!!!!!

:huh:

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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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