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    Do you have questions about celiac disease or the gluten-free diet?

Rachel--24

Omg...i Might Be On To Something

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Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

I too was wondering how you were doing?

More prayers coming your way for strength and health.

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Hmmmm....still thinking about all those people on antibiotics and not getting better. Then again I also know that antibiotics works well for some people and they DO get better.

These are my thoughts:

#1

There are co-infections that arent being treated.

#2

I know I've mentioned in the past about Lyme triggering the Celiac gene for some people and this may be why there isnt a complete recovery on the gluten-free diet.....because they are not aware of the Lyme. This could also happen the other way around...these people know they have Lyme but do not realize that they have developed another condition as a result of the stress on their body. Celiac could get triggered and because all focus is on Lyme....Celiac goes undiagnosed....and they are still symptomatic???

#3

They did not go through a detox program

#4

They possibly have heavy metal issues to deal with

#5

They are feeding themselves antibiotics for years and years and as a result are causing more damage to their immune system and their body as a whole. Thus making them not even strong enough to keep the Lyme at bay once they get off the antibiotics.

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Evie....as mentioned before, C. Diff. is nothing to mess around with....I think it might be good for your to go into the hospital, they can give you IV's and nutrients and monitor you carefully.....please be careful, will be praying for you, dear Lady. God bless - - -

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Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Evie, I have been thinking about you as well, wondering how you have been doing. So sorry to hear the "d" is worse and that you are so weak. I am in agreement that hospilization might be a good thing, to get you hydrated and normalized. Please take care :)

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Rachel,

All of your thoughts make sense. Could be combinations of them for different people also.

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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:

Yep, church choir, and it is fun and I really like it, but not really so relaxing anymore, lol. The rehearsals would be more fun if I didn't have to wake up so early in the morning. :P

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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.

Wow, great that you'll see him for Thanksgiving!

I find I really have to work at getting small tasks done, chores are like mountains and I have to work myself up to climbing them, somedays even the smallest task seems like it will take too much energy and I let it slide.

Yes!!! My house hasn't been cleaned in months, lol. It's overwhelming to even think about it!

hI,

hAVE COME IN THREE QUARTERS WAY THROUGH THIS THREAD. DONT HAVE ACLUE IF YOU MEAN ME BUT MY NAME´S DEBBIE. SO WHeRE DO WE GO FROM HERE??

No problem...most of us came in at some point other than the beginning...just ask any questions you'd like.

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Hmmmm....still thinking about all those people on antibiotics and not getting better. Then again I also know that antibiotics works well for some people and they DO get better.

These are my thoughts:

#1

There are co-infections that arent being treated.

#2

I know I've mentioned in the past about Lyme triggering the Celiac gene for some people and this may be why there isnt a complete recovery on the gluten-free diet.....because they are not aware of the Lyme. This could also happen the other way around...these people know they have Lyme but do not realize that they have developed another condition as a result of the stress on their body. Celiac could get triggered and because all focus is on Lyme....Celiac goes undiagnosed....and they are still symptomatic???

#3

They did not go through a detox program

#4

They possibly have heavy metal issues to deal with

#5

They are feeding themselves antibiotics for years and years and as a result are causing more damage to their immune system and their body as a whole. Thus making them not even strong enough to keep the Lyme at bay once they get off the antibiotics.

Rachel, yes, much of what I have been thinking although I hadn't thought of the Lyme triggering Celiac and people continuing to be ill because of that, you are so smart. Actually I had gone off in the direction of Tailz and was beginning to feel everybody has Lyme, there is no Celiac. :ph34r::lol::ph34r:

I keep returning to how disease is defined and how we thing of Lyme as a disease and Celiac as a disease and in the sense that the body is not at ease there is a commonality but if we think about how they are diagnosed we can see that there is a significant difference. With proper tests Lyme may be detected in the blood, it is a bacteria. With Celiac, there is a blood test which is considered unreliable and diagnosis is a result of observable damage done to the body, the damage done by an auto-immune response to gluten. They are different. Lyme is clever, it attacks where we are vulnerable and there is the commonality.

I am curious about my own family, my sister who was diagnosed with Celiac five years ago was told only that she should avoid wheat, until I spoke to her this spring she never understood what gluten was. Her doctor led her to believe her real problem was IBS and that the wheat allergy - Celiac diagnosis- was minor. She continued to eat gluten and is very ill, given the circumstances of her life she continues to eat gluten occasionally. I am sad to say that illness seems to have become a way of life for her. One of my brothers was recently given a Celiac diagnosis and I am very curious to see if going gluten free will restore his health or whether he will be like me and find that he has other problems that won't go away. His daughter was treated with a short course of antibiotics a few years ago because she had the Lyme Bull's Eye rash and she is now very ill.

I think what is important is whether or not people are motivated to change, that change might be very drastic. It might mean uprooting yourself and replanting yourself in an entirely different kind of garden, I think you really have to want that and that you must have some confidence, some knowing that it is possible to do. I look around me and see that my friends in their fifties are not looking at changing, their pain and illness is not getting in their way yet, and I know now that although I ate organically and lived somewhat differently it still took real pain for me to change.

I have friends I am about to lose my mind on, their daughter is ill, she appears anorexic, she has all the symptoms I have and the tests show nothing so they have now taken her to a psychiatrist. I have known this child since she was small and I do not believe she needs psychiatric help, she and I talked just a few months ago and I could see in her eyes what I know I was beginning to feel in my own and that is, people think I'm crazy. It breaks my heart that parents would be so willing to believe that and it fills me with a ruthless honesty, I'm about to lose some friends.

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I am curious about my own family, my sister who was diagnosed with Celiac five years ago was told only that she should avoid wheat, until I spoke to her this spring she never understood what gluten was. Her doctor led her to believe her real problem was IBS and that the wheat allergy - Celiac diagnosis- was minor. She continued to eat gluten and is very ill, given the circumstances of her life she continues to eat gluten occasionally. I am sad to say that illness seems to have become a way of life for her. One of my brothers was recently given a Celiac diagnosis and I am very curious to see if going gluten free will restore his health or whether he will be like me and find that he has other problems that won't go away. His daughter was treated with a short course of antibiotics a few years ago because she had the Lyme Bull's Eye rash and she is now very ill.

I hope you will be successful in showing them through your better health, they way to go. Celiac untreated and lyme, untreated or treated are nothing to mess around with.

I have friends I am about to lose my mind on, their daughter is ill, she appears anorexic, she has all the symptoms I have and the tests show nothing so they have now taken her to a psychiatrist. I have known this child since she was small and I do not believe she needs psychiatric help, she and I talked just a few months ago and I could see in her eyes what I know I was beginning to feel in my own and that is, people think I'm crazy. It breaks my heart that parents would be so willing to believe that and it fills me with a ruthless honesty, I'm about to lose some friends.

I will pray for the Lord to give you discernment in what to say. That poor girl. My heart breaks for her. :( I will also pray that their eyes will be opened to the proper treatment for their daughter and for her strength in fighting this as well. May I ask how old she is?

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Shoot, it's too dang busy here today, so I only got to page 572...have to work. :angry: Try to catch up later.

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Rachel, yes, much of what I have been thinking although I hadn't thought of the Lyme triggering Celiac and people continuing to be ill because of that, you are so smart. Actually I had gone off in the direction of Tailz and was beginning to feel everybody has Lyme, there is no Celiac. :ph34r::lol::ph34r:

Rinne....I am about to possibly lost a BEST friend (well maybe not lose but I am going to throttle her :angry: ), she is driving ME out of my mind, her son is 18, he is 5' 11" and weighs 125, active water polo player, he simply CAN"T eat, so she says no, he's not anorexic and nothing's really wrong, he says he WANTS to eat badly, he just can't (he's had full physical and tests fine - - it is all mental - - his mother is a total control freak and I see this as his way of taking control).....she is driving me crazy. This boy has lost about 25 or 30 pounds in the last couple of years....but it would take great soul-searching and self-inventory for my friend to deal wtih treatment correctly.....argh.

As far as your above-quoted statement, I have come to the concusion (with my advanced medical degrre :lol: ) that there ARE just true Celiacs....I think I am one of them, but I was affected mainly psychologically in my life. I have never, ever had any achiness, numbness, tingling, swollen glands (except during short illnesses), none of the classic lyme symptoms. My body has been virtually pain-free for my entire life.....until very recent years when extreme fatique set in, but no pain. So....I don't think I fit into the Lyme clan...but there are many other clans in my family....

I am stalling and procrastinating. Gotta get back to work. ;)

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After dinner had started, I went up with my mom to chat with Meg for a little bit. We went to walk away and she and my mom stayed back and then I realized my mom was crying. I just figured they were having a "moment" (Meg is like part of our family). My mom went out into the hallway, and she said, So you didn't see the table with the seating charts/gifts/etc on it then did you? (She is still crying). I hadn't seen it because I had been with the wedding party. Apparently, instead of doing wedding favors, Meghan and Brian made a contribution to the Celiac Disease Foundation in honor of me. They had apparently wanted to do something for me since I have been so sick lately, and so instead of spending money on favors that people don't really remember, they wanted to do something meaningful. So on one of the tables in the front, they had a frame with the announcement of the donation to the Celiac Disease Foundation and had a write-up about what Celiac was.

That is one of the neatest things I've heard in a long time!!!!!

Now, I know Meghan...and she is the sweetest and dearest person I know. I've met Brian a few times (since I moved away, I'm not home as much), but I just "feel" like I know him, because Meghan and I are so close. I love him just for loving Meghan (which I told him in my toast!)...but for him to be so concerned about me, his bride's best friend---that says a lot about him. They had told his family (and her family already knew, of course), but all wedding long, I had people coming up to me and telling me that they had heard what I had been going through and wanted to let me know that they were hoping I was finding answers and that I was being kept in their prayers. To hear that from people that I had never met (but felt like I had known them forever, because I've heard about them from Meghan)----made me cry some more too. :)

Okay, that might be the second neatest thing I've heard in a long time!

Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Oh Evie!!!! Praying hard!

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Susan, I think you are right, there are people who have celiac disease and nothing else. The thing is, I don't have celiac, but am gluten intolerant and I'm not getting better. I feel like my gluten intolerance was actually triggered by something else ... and this probably happens for some celiacs, too. I don't necessarily think my gluten intolerance will go away when I'm treated for whatever other problem I have since it's already triggered, like celiac would be, but it would be nice to think that I won't be as hyper-sensitive to it.

I think it can get rather complicated ... like figuring out a puzzle.

I feel so bad for that little girl ... no one believed me when I was little and sick either, but I was never taken to a psychiatrist ... that's why no one takes me seriously now.

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Andrea, she is sixteen, and though I say I am about to lose my mind I will think long and hard about how I will approach the subject. I did talk to her Mom at my birthday party and gave her Hoffman's phone number and they have the resources to follow up with a private clinic. The next time we travel to their town I will visit and let them know how I am doing and inquire about her.

Susan, I think you are right, there are people who have celiac disease and nothing else. The thing is, I don't have celiac, but am gluten intolerant and I'm not getting better. I feel like my gluten intolerance was actually triggered by something else ... and this probably happens for some celiacs, too. I don't necessarily think my gluten intolerance will go away when I'm treated for whatever other problem I have since it's already triggered, like celiac would be, but it would be nice to think that I won't be as hyper-sensitive to it.

I think it can get rather complicated ... like figuring out a puzzle.

I feel so bad for that little girl ... no one believed me when I was little and sick either, but I was never taken to a psychiatrist ... that's why no one takes me seriously now.

Susan, I think Carla is right. I think there are people who simply have Celiac despite my :ph34r::lol::ph34r: but I would also emphasize that my friend who was diagnosed 13 years ago has no pain, she has fatigue. We talked for five months and she never once thought I had Lyme because my symptoms were so different than hers.

Carla, I am sorry you feel that you are not taken seriously by family and friends. :( I can relate. Isn't it wonderful that we have Rachelville where we are all taken seriously. :)

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Carla, I am sorry you feel that you are not taken seriously by family and friends. :( I can relate. Isn't it wonderful that we have Rachelville where we are all taken seriously. :)

Thank you. It's actually much deeper than "just" my health ... it's a long story, I'll spare you, but my mom and sisters don't support me on anything ... when it became obvious to my children, it became necessary to cut ties for a while at least. I have GREAT support from my husband, kids and Dad. Also from my grandmother (Moms' mom). So, I do have loving people around me, it's just some of them who have a problem with me, which is a shame as gluten intolerance seems to be a real problem in my family and no one will be tested. It's actually my grandmother nagging them -- not me!!! :D What is nice about Rachelville, to me, is that no one really understands unless they've gone through it ... that's what's different about your support ... hubby is great, but he doesn't know how it feels.

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What is nice about Rachelville, to me, is that no one really understands unless they've gone through it ... that's what's different about your support ... hubby is great, but he doesn't know how it feels.

I haven't been through what you guys (or should I say gals :) ) have either, but I still like to try and be there for everyone.

Rachel has been sweet enough to educate me on some things too.....which is nice.

Still learning and bookmarking pages for further reference.....as long as my computer doesn't die. :blink:

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I haven't been through what you guys (or should I say gals :) ) have either, but I still like to try and be there for everyone.

Have you read your list of intolerances? You have been through something!!! :P You are definately there for everyone!! :wub:

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Have you read your list of intolerances? You have been through something!!! :P You are definately there for everyone!! :wub:

Yea, but we don't know which are more permanent or troublesome intolerances yet. :)

Is your lyme appointment the 13th now?

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What is nice about Rachelville, to me, is that no one really understands unless they've gone through it ... that's what's different about your support ... hubby is great, but he doesn't know how it feels.

This is so true for me, too. There are family members on both sides who I know think I'm a nut. I've been accused of trying to lose weight to fit into a particular dress, not wanting to attend certain family get-togethers, and being super-sensitive when I was actually sick as a dog, and at the same time keeping it to myself to not call any more attention my way. It sounds ludicris now, when I write it out, but it's a miracle I didn't snap a long time ago.

I haven't been through what you guys (or should I say gals :) ) have either, but I still like to try and be there for everyone.

Andrea--Don't discount any of what you've been through. It may be different--we all have different things we deal with--but yours are just as valid and important. They happen to you.

Being there is something that for all of us is so important. Like what Carla and I were just talking about. Your support means more than you know--really :)

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Being there is something that for all of us is so important. Like what Carla and I were just talking about. Your support means more than you know--really :)

Awww, thanks. :):wub:

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Yea, but we don't know which are more permanent or troublesome intolerances yet. :)

Is your lyme appointment the 13th now?

Yes!

Uh, oh, it's turning into a love fest again!!! :lol: I'm no good at love fests ... where's Richard, we need a joke! ;)

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Uh, oh, it's turning into a love fest again!!! :lol: I'm no good at love fests ... where's Richard, we need a joke! ;)

:lol::lol:

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