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

mollyacampbell Rookie

Have you eliminated grains also? Sounds like there's very little you can eat, but it's helped me.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor

Just talked to my mom again. She talked to my dad's wife's brother today. Dad went off dialysis Friday and supposedly it was his decision to stop treatment. They were told he could live 3-7 days without dialysis. It's been 6. So now I've got to call his wife or her brother and try and figure out if it's worth us driving for 24 hours straight to get down there. He's near the end. He's being kept drugged and comfortable. They say when the kidney shuts down the other body parts follow until he slips peacefully away.

I'll talk to Mitch when he gets home as well.

It's probably not worth it to race down there if he may not make it and he probably won't even know I'm there. I think that's why he granted us permission to go down over Thanksgiving weekend. :(

Rachel--24 Collaborator

Tonight at BioSET we did heavy metals. I probably only had problems with maybe 1/4 of the panel. Mercury, lead, nickel, cadmium....and a few others.

I already know cadmium is a big problem for me...who knows....it could be even more of a problem than mercury. Cadmium shows up in everything...including my hair analysis.

Guess where it can come from??? Cigarettes. :ph34r:

Anyways I didnt have Anna tonight and the lady I had didnt say too much about anything...shes not too familiar with me since I've only seen her 2 other times.

The last time I saw her she wanted me to try some stuff called Neprinol.

Open Original Shared Link

Its enzymes that are systemic....not digestive enzymes. Its suppoosed to reduce imflammation and I guess its helped alot of people with various issues. Anyways I never bought it because its like $90 and I didnt want to pay that much for something I might react to.

Now that I'm very sure I react to enzymes because of fungus I'm glad I didnt try it. The lady asked me again tonight. I told her I cant do enzymes but she thought it might help anyway....she said I could try it and if I react I could return it.

She talked to Anna and came back saying that we'll just hold off on it for now. Anna ordered the Aspergillus test kit from the lab and it should be here in a few days. YAY! :)

I talked to Anna about enzymes last week...I had asked her about an enzyme that isnt plant based...it comes from animal. She said its from pig and prescription only. People who are highly sensitive to molds can take this instead of other enzymes....I had read about it in one of my books. Anna ordered this for me as well.....so I'll be trying that out soon.

I'm glad I didnt ever buy the Neprinol cuz I read this on the site...

One of the few manufacturers in the world that produces a full spectrum of industrial enzymes derived from all four natural origins: plant, animal, fungus and bacteria.

:blink:

I think I need to get rid of fungi at this point....definately dont need to introduce more into my hypersensitive fungi-infested body. :P

I'm super anxious about the Aspergillus test though. I think it *might* be something that makes a whole lot of sense for me. It actually feels like something is growing in the tissue all over my face. It sucks and its painful. :angry: I've been complaining about it from day one but noone can *see* it and noone can comprehend what I'm saying when I try to describe it. :rolleyes:

The most pain is in my nose, the area all accross my brow, my jaw and my ears. A few years ago(before diet changes) I had fluid coming out of my ears now and then. It seemed like water was coming out but it didnt make sense and it was just totally random. :huh:

I showed this to the Ear Nose Throat Dr.....I could sometimes just rub the area right in front of my ears (its usually swollen) and I'll feel some warm fluid come out of ear. The ENT said it was nothing...that I was just creating sweat by pressing on that area. :huh:

WTH???? Another idiot Dr. :angry:

Yeah......there was a time when I was surrounded by these "brainiacs". :rolleyes:

Anyways I read that Aspergillus afects the sinus, ears and nose. It said that fluid may come out of the ears. :blink:

The infection may also occur in the ear canals and sinuses. In the sinuses and lungs, aspergillosis shows up as a ball (aspergilloma) composed of a tangled mass of fungus fibers, blood clots, and white blood cells.

Aspergillosis of the ear canal causes itching and occasionally pain. Fluid draining overnight from the ear may leave a stain on the pillow. Aspergillosis of the sinuses causes a feeling of congestion and sometimes pain or discharge.

So yeah....I sometimes have fluid coming out of ears....it doesnt stain though....its clear like water. I dont have any nasal disharge....unless that would just be a runny nose?? I do have runny nose if I start getting really swollen in my head.

I always have pain in my head and face. :(

When the HN Dr. examined me this time last year she saw the big polyps in my nose and also said that my ears had alot of damage and scar tissue. :unsure:

I didnt know why that could be but I know that theres alot of pressure, pain and itching in there....especially when I eat alot of foods that worsen my symptoms.

Also check this out...

Aspergillus is very common and is frequently found in compost heaps, air vents, and airborne dust.

WTH?? Could this be why I got WAY worse when the heaters started coming on this winter?? :blink:

Everything got so much worse and my head felt very swollen with pressure everywhere.

The BioSET test of my room showed I was reacting to something in the room...the bowl of water had been sitting right under the heater vent. This wasnt the case in the living room and I tested fine for that room. <_<

Heck...I feel almost as anxious about this test as I did for my Lyme test. I have a feeling its gonna be a loooong few weeks ahead of me. :(

Rachel--24 Collaborator
It's probably not worth it to race down there if he may not make it and he probably won't even know I'm there. I think that's why he granted us permission to go down over Thanksgiving weekend. :(

Awww Andrea.... :(

I'm really glad you got to go down there with everyone when you did....I'm sure it meant alot to your Dad. Its good that he will go peacefully and that hes comfortable right now. If you go now will you stay there or come back and then go again for the funeral?? It doesnt sound like you can stay there that long due to Mitch needing to work.

Do what you think is best...I know you spent the time with your dad when you went for Thanksgiving and thats what really matters. If its too late to go now its ok...he knows that you were there to see him and say goodbye when you went with Mitch and the kids. You had that time with him and its good that you did.

((((((hugs))))))))))

AndreaB Contributor

Just talked to dad's wife. She doesn't even know if dad will make it through the night and said that he wouldn't know I was there if he did make it till tomorrow night. She reminded me that that is why we came down over Thanksgiving for, to see him. She wanted to know why my brother hadn't come down. I know dad had made a comment about Kevin never calling and he didn't expect to hear from him til his birthday (March 4, he'd a been 79). I told her that Kevin had started a new job and didn't have the money. Then she wanted to know where we got the money and I told her we put it on credit card. I'm assuming that dad wasn't too happy with my brother.

I'm glad we had the time and I just spent it quietly with him. I remember he asked me what my plans were when we were down there and I told him I came down to see him not sightsee. I spent all day with him (probably about 10 hours a day).

Rachel--24 Collaborator
Just talked to dad's wife. She doesn't even know if dad will make it through the night and said that he wouldn't know I was there if he did make it till tomorrow night. She reminded me that that is why we came down over Thanksgiving for, to see him.

Andrea...I agree with your Dads wife. You went there at a time when he was coherent and he was aware that you were there to see him. Rushing over there now is only going to add stress that you dont need.

Its too bad your brother never went to see him. :(

Hang in there ok. :)

Judyin Philly Enthusiast

Andrea, what strange questions (where you got the $$) at a time like this..? :blink:

I'm so glad that you could have quality time at thanksgiving also.

celebrate that memory if you can

hugs and love

prayers too.

judy


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



Celiac.com Sponsor (A8-M):



diamondheart Newbie
Just talked to dad's wife. She doesn't even know if dad will make it through the night and said that he wouldn't know I was there if he did make it till tomorrow night.

I'll be thinking of him tonight and send him off on the next leg of his journey. I know it will be a hard night for you Andrea. You can be there for him even if you are not physically with him. He'll know and appreciate it. Love is beyond time and space. He'll know you are holding him so that he can pass to the next world with your blessing.

Take care, Claire

Rachel--24 Collaborator

Holy cow...I am finding more and more info. convincing me about having an Aspergillus infection. :unsure:

I dont wanna get my hopes up about possibly finding a cause for my worst symptoms....but I cant help but be a little excited....which is probably not a good thing. :ph34r: Big excitement can sometimes lead to big disappointment and I've traveled this road so many times already. :(

If this is caused by Aspergillus...then I'd have to say that Candida is kind of a walk in the park in comparison to this mold.

Heres more of what I've found.

Toxigenic aspergillus is a large family of moulds that can cause asthma, eye and ear infections. Aspergillus is found in stored foods, soils and plants. Aspergillus flavus and Aspergillus parasiticus produce a mycotoxin called aflatoxin, a known carcinogen that can cause liver cancer and lung cancer. Aspergillus fumigatus grows on organic matter and causes infections in people with weak immune systems.

I wonder if this is why I do so horribly on vegetables and stored grains. :huh:

Someone even gave me carrots grown from her own backyard and I reacted immediately with swelling in my face. :blink:

I guess as far as Aspergillus goes it doesnt matter whether the vegetables are organic or not.

So maybe the problem I'm experiencing is not from Auxigro afterall. :o

Auxigro will always be banned from Rachelville though......we will keep the geese. ;)

Many moulds produce mycotoxins, a by-product that is toxic to humans. Mycotoxins can cause allergic reactions, respiratory illnesses and can harm the immune system.
Yeah....something is really putting my immune system through the ringer. <_<

The International Agency for Research on Cancer (IARC) has deemed aflatoxin a Group 2B carcinogen. This means that aflatoxin is a possible cancer-causing agent for humans. Aflatoxin is a mycotoxin (a toxic by-product of moulds) produced by Aspergillus flavus and Aspergillus parasiticus. Aflatoxin is associated with liver and lung cancer. It has been found in contaminated corn, peanuts and other grains and foodstuffs. Aspergillus flavus and Aspergillus parasiticus are not commonly found indoors or on building materials. Aspergillus flavus and Aspergillus fumigatus are also known to cause aspergilliosis, an infection of the lungs that causes severe cough, chest pains, breathing difficulties, fever, sinus pain and facial swelling.

This is consistent with what I've been saying. I dont feel like the mold is coming from any building I'm in....its in the food I eat....and in the dust flying around.

Aspergilliosis (also spelled aspergillosis): An infection of the lungs caused by aspergillus.

Aspergilliosis causes severe cough (sometimes with blood), chest pains, breathing difficulties, fever, sinus pain, weight loss and facial swelling.

Those are my symptoms....although I dont think it would be in my lungs...I think it would be in my sinus. I dont get coughing but I did used to get chest pain and shortness of breath.

Aspergillus flavus: A toxic mould that is found in soils and stored foods. It produces the cancer causing agent, aflatoxin.

Aspergillus fumigatus: A fast-growing toxic mould that can cause infections in people with weak immune systems. It can also cause hypersensitivity pneumonitis in those who experience long-term exposure. It grows on compost, dung and other organic matter.

Aspergillus parasiticus: A toxic mould that produces the cancer causing agent, aflatoxin.

If I test positive I wonder if the test will also identify which species I have?? :unsure:

Its interesting that it can cause weightloss. I only was able to gain weight back when I stopped taking digestive enzymes and other supplements at the beginning of this thread. I've been able to maintain my weight since then and with being extra careful with my diet. I always start losing when I try supplements or adding in vegetables or grains such as rice cakes. Rice cakes seriously mess me up. <_<

Rachel--24 Collaborator
I'll be thinking of him tonight and send him off on the next leg of his journey. I know it will be a hard night for you Andrea. You can be there for him even if you are not physically with him. He'll know and appreciate it. Love is beyond time and space. He'll know you are holding him so that he can pass to the next world with your blessing.

Take care, Claire

Beautifully said Claire. :)

AndreaB Contributor

I have so many questions amidst all the tears.

Why did he give up on dialysis? He never told us how bad things were, although we heard he was terminal. He had dialysis on Friday, what happened to change things? I talked to him Saturday late morning/early afternoon. He sounded fine aside from his voice being hoarse. Was this mass he told me about an old one that he knew about before and just told us, or was it a new one? I hoping his wife can answer some of my questions, we aren't real close although I like her.

Monday night when he lost it he was saying his wife and her brother were trying to kill him and was trying to get away. He fell down in the process. His wife and brother are in their late 50's, early 60's. When the paramedics (police?) were called they didn't know who to deal with, who to believe. He was telling them they were trying to kill him and they were telling them he had lost it. From what we've been told his meds were totally out of kilter. I don't know how that could happen, but they've got him evened out and heavily medicated now.

I expect to get a phone call tomorrow sometime. I didn't realize the end came so quickly without dialysis.

I want to be by his side so much and I can't be.

I was telling my husband that a daddy's little girl is always his little girl and he is always invincible strength and can do anything. I've never lost that attitude with my dad and I'll miss him. We haven't been as close these last 5-10 years. He was so mad about us having a third child that I didn't even talk to him much during that pregnancy. Although he did think Seth was pretty neat (for a 1 year old) when we were down there. He's not real comfortable around young children.

I really should try and get some sleep. Try being the operative word here. :(

NoGluGirl Contributor
Tonight at BioSET we did heavy metals. I probably only had problems with maybe 1/4 of the panel. Mercury, lead, nickel, cadmium....and a few others.

I already know cadmium is a big problem for me...who knows....it could be even more of a problem than mercury. Cadmium shows up in everything...including my hair analysis.

Guess where it can come from??? Cigarettes. :ph34r:

Anyways I didnt have Anna tonight and the lady I had didnt say too much about anything...shes not too familiar with me since I've only seen her 2 other times.

The last time I saw her she wanted me to try some stuff called Neprinol.

Open Original Shared Link

Its enzymes that are systemic....not digestive enzymes. Its suppoosed to reduce imflammation and I guess its helped alot of people with various issues. Anyways I never bought it because its like $90 and I didnt want to pay that much for something I might react to.

Now that I'm very sure I react to enzymes because of fungus I'm glad I didnt try it. The lady asked me again tonight. I told her I cant do enzymes but she thought it might help anyway....she said I could try it and if I react I could return it.

She talked to Anna and came back saying that we'll just hold off on it for now. Anna ordered the Aspergillus test kit from the lab and it should be here in a few days. YAY! :)

I talked to Anna about enzymes last week...I had asked her about an enzyme that isnt plant based...it comes from animal. She said its from pig and prescription only. People who are highly sensitive to molds can take this instead of other enzymes....I had read about it in one of my books. Anna ordered this for me as well.....so I'll be trying that out soon.

I'm glad I didnt ever buy the Neprinol cuz I read this on the site...

:blink:

I think I need to get rid of fungi at this point....definately dont need to introduce more into my hypersensitive fungi-infested body. :P

I'm super anxious about the Aspergillus test though. I think it *might* be something that makes a whole lot of sense for me. It actually feels like something is growing in the tissue all over my face. It sucks and its painful. :angry: I've been complaining about it from day one but noone can *see* it and noone can comprehend what I'm saying when I try to describe it. :rolleyes:

The most pain is in my nose, the area all accross my brow, my jaw and my ears. A few years ago(before diet changes) I had fluid coming out of my ears now and then. It seemed like water was coming out but it didnt make sense and it was just totally random. :huh:

I showed this to the Ear Nose Throat Dr.....I could sometimes just rub the area right in front of my ears (its usually swollen) and I'll feel some warm fluid come out of ear. The ENT said it was nothing...that I was just creating sweat by pressing on that area. :huh:

WTH???? Another idiot Dr. :angry:

Yeah......there was a time when I was surrounded by these "brainiacs". :rolleyes:

Anyways I read that Aspergillus afects the sinus, ears and nose. It said that fluid may come out of the ears. :blink:

So yeah....I sometimes have fluid coming out of ears....it doesnt stain though....its clear like water. I dont have any nasal disharge....unless that would just be a runny nose?? I do have runny nose if I start getting really swollen in my head.

I always have pain in my head and face. :(

When the HN Dr. examined me this time last year she saw the big polyps in my nose and also said that my ears had alot of damage and scar tissue. :unsure:

I didnt know why that could be but I know that theres alot of pressure, pain and itching in there....especially when I eat alot of foods that worsen my symptoms.

Also check this out...

WTH?? Could this be why I got WAY worse when the heaters started coming on this winter?? :blink:

Everything got so much worse and my head felt very swollen with pressure everywhere.

The BioSET test of my room showed I was reacting to something in the room...the bowl of water had been sitting right under the heater vent. This wasnt the case in the living room and I tested fine for that room. <_<

Heck...I feel almost as anxious about this test as I did for my Lyme test. I have a feeling its gonna be a loooong few weeks ahead of me. :(

Dear Rachel,

I have had similar sinus conditions. I get them a lot. My ears get loaded with wax to the point there are times I have actually cleaned them out four times a day! My nose runs practically everytime I eat no matter what! I thought that would stop since going gluten-free, but it has been almost six months now. Cold and hot temperatures make it run, too. Could it be Vasamotor Rhinitis, or Non-Allergic rhinitis, or apergillus? Could Candida have to do with it? My head often feels puffy and swollen, too. Lately I have been going into sneezing fits. Yesturday, I actually sneezed so hard I saw spots! I also have bad teeth, and my glands always hurt (particularly my left one right under my jaw) and there is jaw pain and migraines. The only thing that gets rid of my headaches is a sinus pill with chlorephenamerine Maleate, Acitomenophin, and used to Pseudophedrine Hydrochloride, but not it has to be Phenylephrine Hydrochloride because of the formulas being switched due to people using it to produce meth.

Sincerely,

NoGluGirl

NoGluGirl Contributor
I have so many questions amidst all the tears.

Why did he give up on dialysis? He never told us how bad things were, although we heard he was terminal. He had dialysis on Friday, what happened to change things? I talked to him Saturday late morning/early afternoon. He sounded fine aside from his voice being hoarse. Was this mass he told me about an old one that he knew about before and just told us, or was it a new one? I hoping his wife can answer some of my questions, we aren't real close although I like her.

Monday night when he lost it he was saying his wife and her brother were trying to kill him and was trying to get away. He fell down in the process. His wife and brother are in their late 50's, early 60's. When the paramedics (police?) were called they didn't know who to deal with, who to believe. He was telling them they were trying to kill him and they were telling them he had lost it. From what we've been told his meds were totally out of kilter. I don't know how that could happen, but they've got him evened out and heavily medicated now.

I expect to get a phone call tomorrow sometime. I didn't realize the end came so quickly without dialysis.

I want to be by his side so much and I can't be.

I was telling my husband that a daddy's little girl is always his little girl and he is always invincible strength and can do anything. I've never lost that attitude with my dad and I'll miss him. We haven't been as close these last 5-10 years. He was so mad about us having a third child that I didn't even talk to him much during that pregnancy. Although he did think Seth was pretty neat (for a 1 year old) when we were down there. He's not real comfortable around young children.

I really should try and get some sleep. Try being the operative word here. :(

Dear AndreaB,

It does seem to go quickly. My best friend's grandfather died several years ago, and he went downhill very quickly, too. Cancer is strange that way. It is a horrible illness. One thing is for certain, no matter how aware you are before it happens, you never can seem prepared for the emotional impact it has. You tell yourself you are, but you take it hard. You cry all the time for days, sometimes weeks after. But before you know it, you realize they are not really gone. They are always with you. It is just you forgot how to feel a presence. You forgot how to sense a soul. Then, you finally feel at peace about it. Death is only the beginning. One of my favorite songs is "My Immortal" by Evanescence. It really describes death well. Amy Lee's vocals are excellent. Music helps me deal with grief.

Sincerely,

NoGluGirl

CarlaB Enthusiast

Andrea, I'm sorry about your dad. I hope you got some sleep last night. I had the same thing with my mom when I got pregnant with number 4 ... I actually got told by other family members that I was selfish for having so many children :blink: !

I agree with everyone else ... you went down there at Thanksgiving to see him because you knew he was in bad shape. I would guess that he stopped dialysis because the burden wasn't worth the trouble anymore, he was terminal anyway. Which would be worse, to die as he is with his body slowly shutting down, or to wait till the tumor grows? Even from a Catholic perspective, dialysis when you're terminal, if it's too much for the person and they don't want it, is considered extraordinary care and can be terminated. It's not like he refused food and water! It sounds to me like he's ready, not like he's giving up ... he's given a good fight.

CarlaB Enthusiast

Rachel, sounds like you are on the right track. The more I think about it and the more I read, the more I'm convinced that the strength of a herx is inversely related to your ability to detox. Detoxing has been part of my lifestyle for over a decade. I'm going through my first herx (the one that happens 21 days after starting antibiotics). It's not too bad ... I had been feeling somewhat better on the meds, now I feel like I did before I started taking them. I'm resting through it, but not terribly uncomfortable (a little muscle and joint pain along with fatigue and occassional nausea).

With you having these other issues, I don't think the herxes would be this "comfortable" for you right now. Plus, your liver has to be working and strong to be on the meds (I get mine tested every month now). So, it's good to take care of this other stuff, get your system detoxing, then take care of the Lyme. You'll probably get more comfortable and feel better as you take care of each thing.

evie Rookie
Dear AndreaB,

It does seem to go quickly. My best friend's grandfather died several years ago, and he went downhill very quickly, too. Cancer is strange that way. It is a horrible illness. One thing is for certain, no matter how aware you are before it happens, you never can seem prepared for the emotional impact it has. You tell yourself you are, but you take it hard. You cry all the time for days, sometimes weeks after. But before you know it, you realize they are not really gone. They are always with you. It is just you forgot how to feel a presence. You forgot how to sense a soul. Then, you finally feel at peace about it. Death is only the beginning. One of my favorite songs is "My Immortal" by Evanescence. It really describes death well. Amy Lee's vocals are excellent. Music helps me deal with grief.

Sincerely,

NoGluGirl

ANDREA, I AGREE WITH THE LAST 2 QUOTES. FIRST MY DAD WOULD NOT GO TO DR. WHEN HE STARTED GOING DOWNHILL ( TOOK 6 MONTH S0 BY THEN TOO LATE TO HELP HIM). HE DIED A PEACEFUL DEATH @ HOME AND OLD FRIENDS, RELATIVES FROM STATES AWAY CAME TO SEE HIM. IN IS 6 MONTHS AFTER EXPLORATIVE SURGERY, HE KNEW THERE WAS NO HELP & HE USED HIS TIME WELL.

I ALSO HAD A LADY FRIEND WHO DID DIALYSIS FOR 3 YEARS, WAS FAILING AND DECIDED TO QUIT DIALYSIS, SHE LIVED ABOUT A WEEK. HER FAMILY WAS SUPPORTIVE, KEPT HER @ HOME

AND SHE DIED PEACEFULLY, SHE DEFINTELY IS MISSED BUT IS INTERESTING HOW I CAN SEE 'HER' IN HER SON, DAUGHTER AND GR DAU. SHE LEFT BEHIND SOME VERY NICE PEOPLE. IT JUST GOT TOO HARD FOR HER TO BEAR. GOD DOES HAVE HIS WAYS OF COMFORTING US, EVEN THO WE DO NOT SEE IT RIGHT AWAY. PRAYERS FOR ALL OF YOU. EVIE

dlp252 Apprentice

{{{{{hugs}}}}} for Andrea this morning! Hope you were able to rest afterall. I can't even imagine what it's like for you right now. At least with my dad, he went very quickly (car accident--killed instantly)...I had no decisions to make, he was just gone, and that was hard enough.

Gosh Rachel...I also have ear pain and drainage! Mine is also clear and leaves no stain. :(

Okay, very disappointing allergist appointment. :angry: So, every Thursday I have choir practice...it starts at 7:00, but the small group I sing with practices at 6:00. I made my appointment for 3:00, which is plenty of time to chat etc. So I get there at 2:45, they bring me to the room at 2:50-2:55 or so. I wait. I wait some more. I wait a long time more. I check my cell phone for the time. I wait some more. I hear laughing, talking, but no doctor. So finally at 3:35 I decide I can't wait any more cuz I have to get home cook dinner, get ready and leave for choir practice by 5:20. So, I go out and say, um, I'm sorry, but I can't wait any longer can we reschedule this appointment. The doctor was out there and looked totally surprised...

They forgot to tell her she had another patient, so she had been chatting with another patient...just talking, not even about patient-doctor stuff. They forgot me. :angry:

So the girl says...oh, don't you want to talk to the doctor?? I say well yes but I don't have time now. They looked at me like I was an alien!! Then the doctor apologizes and says that she likes to talk to her patients if the doesn't have any others and that the girls didn't tell her she had another patient. So she asks if we can talk, and I say well, I only have a couple of minutes. So she says "well can I have 5 minutes of your time". WTF?? Huh? You just wasted 40 minutes of my time.... :angry:

I was being very polite considering, but at that point I just wanted to leave cuz it was raining and people were driving really weird and I was only going to have about an hour at home to do everything. So in the end, not much was settled. I didn't get to ask any of the questions I wanted to, in fact couldn't even think of them by that time. She did ask if I thought the shots were helping and I said I didn't know, but that I thought cutting out casein/gluten made more of a difference. She is going to reduce my dosage while the pollen season is active to see if that helps cuz she says some patients react at pollen season.

So this morning, I'm trying to keep a level head and give this a chance, but the other half of me (the emotional latin blooded side) is saying I don't want to get any more shots and I'm not going back, so there, lol. :lol:

AndreaB Contributor

Donna,

:angry: Your appointment. I can't believe it! But on the other hand I can. :(

Carla,

Glad your herx isnt' too bad.

I talked to dad's wife this morning, she called. She's thinking more clearly. She said she can't tell us not to come down as we all have different grieving processes and as long as I'm aware he may not make it til I would get there. I told her my heart is there with him. I told her I hadn't wanted to bother her as I know she's going through a lot but I wanted to know what was going on.

Anyway, she told me what happened Sunday night/Monday morning. I don't know if he started giving up the fight 2 weeks ago when he found out about this tumor. I asked her if that was the old one that he hadn't told us about previously and she said it was a new one. She said once it's in the bones it's hard to stop and I guess that's what happened. It all started with prostate cancer though. I suspect he'll slip away sometime between now and the end of the weekend. He's being taken good care of in the hospice he is in (it's a little 10 bed hospice). He and his wife talked things through awhile ago about how things were to go once things progressed.

I really want to go and hold his hand but we'll more than likely just stay home. I just wish he lived a little closer, a 24 hour drive straight through would be difficult for everyone. My mom also reminded me that we would have to pass through two mountain passes and we don't know how they will be. My mom has been unable to reach my brother at this point but she'll keep trying. I don't want to fly by myself with Seth as he would need to be watched and I couldn't be with dad and watch him at the same time. The only way we could do this is to drive. Mitch asked me what was the last thing I said to him on Saturday and I told him "I love you". So he reminded me that at least I told him I loved him.

Must go get Seth out of his highchair....

Rachel--24 Collaborator
Could it be Vasamotor Rhinitis, or Non-Allergic rhinitis, or apergillus? Could Candida have to do with it? My head often feels puffy and swollen, too. Lately I have been going into sneezing fits. Yesturday, I actually sneezed so hard I saw spots! I also have bad teeth, and my glands always hurt (particularly my left one right under my jaw) and there is jaw pain and migraines.

I have chronic swollen glands as well. Everything has improved over the whole 4 years....all of the dietary changes I've made helps tremendously. I havent needed pain meds at all for the past 2 years. I relied on them daily prior to changing my diet.....in the end I'm sure it wasnt helping my immune system or my gut taking the meds everyday.

I believe in my case that its definately something infectious causing the symptoms. I think its probably always the case when there are multiple food intolerances involved.

For the past year or so I've felt that its not the foods themselves that are problems for me...but more likely stuff *in* the foods....chemicals, molds, etc.

Definately something infectious which took adavantage when my defenses were down....it all happened very quickly. I suppose it could be candida but from what I know candida prefers the mouth, vagina, gut....I'm sure ther sinus as well. I've never had thrush or a "womanly" yeast infection so I'm thinking it might be unlikely candida is the culprit in my sinus.

Aspergillus prefers the lungs and sinus.....its a mold rather than a yeast. I'm thinking it might be Aspergillus. <_<

It would be nice to try out the meds and see if they help but I gotta wait for the bloodwork and the results.

I'm probably in the minority on this board but I'm from the camp that believes autoimmune stuff, leaky gut, food intolerance, Fibromyalgia, even the female problems....are all caused by infectious "invaders" in our bodies.

Last night on the news they announced that they *think* they have discovered the cause of IBS. :o

They were saying that they believe its due to bacteria overgrowth....the bacteria which is found in the colon overgrows into the small intestine and causes IBS symptoms.

Obviously mainstream is WAY behind on this.....but at least they are catching up. :)

Maybe in another 10 years or so they might startt acknowleding Candida overgrowth as well. :rolleyes:

CarlaB Enthusiast
I have chronic swollen glands as well.

I have this, too, from the Lyme.

I definately think fibro is caused by infection ... many people with Lyme are diagnosed with fibro first. Same with chronic fatigue.

I believe that leaky gut can be caused by different things ... this is just my opinion ... it could be foreign invaders, as you say, but I also believe it can be caused by antibiotic overuse. But, that could still be invaders ... antibiotic overuse causes candida, which could be the invader that causes leaky gut.

It seems that for Celiac Disease, the gluten is the "invader."

Rachel--24 Collaborator
The more I think about it and the more I read, the more I'm convinced that the strength of a herx is inversely related to your ability to detox.

I agree 100% about that. A herx occurs because your body cant detox the toxins produced by the dying bacteria or yeasts. You're killing of more than your body is able to detox....I dont feel its necessarily a "good" thing. It puts stress on your immune system and your organs....particularly the liver.

I think people feel that its a good sign simply because it makes them feel the treatment is working....so in that sense a herx might be welcomed. Beyond that....I dont see anything beneficial about it.

I definately think my body will detox much better after we kill off whatever is causing these symtpoms. I *know* its not Lyme in my sinuses producing these problems.

We still dont even know if Lyme is making me sick at all.....it might not be causing any of my symptoms. I think Lyme will be dealt with later on....after we figure out more about this mold stuff and its significance.

I think the mold may have been there for years....if I end up positive for it. From what I've read it can grow slowly....it can only be a problem if the immune system is weak. Any pathogen can cause autoimmune problems....it may even be a pathogenic mold which was causing autoimmune attacks on my thyroid whenever I got stressed. :unsure:

I think the mercury played a part and even worse was the radiation....killing my thyroid. Going from hyperthyroid to severely Hypo with a TSH of 26.5 in a matter of days. That kind of change in the body can definately give pathogens the upper hand. <_<

I feel like we're going to figure out more things in the next couple months.

Rachel--24 Collaborator
It seems that for Celiac Disease, the gluten is the "invader."

Honestly I dont believe that gluten starts out as the "invader"....I think it becomes the invader only when the body is provoked by an infectious invader.

The reason the pathogens cause autoimmune disease is because they hide in the bodies tissue and they can make themselves resemble parts of the body. When the immune system attacks.....it can inadvertantly begin attacking its own host. This is what autoimmune disease is all about.

autoimmune disease

diamondheart Newbie

Andrea, hang in there! (((((hugs)))))

Donna, I would be annoyed too.

I'm probably in the minority on this board but I'm from the camp that believes autoimmune stuff, leaky gut, food intolerance, Fibromyalgia, even the female problems....are all caused by infectious "invaders" in our bodies.

I definitely think that there is a lot we don't know about autoimmune disease triggers. I don't think we know that much about viruses let alone bacteria, molds, and yeast! I was thinking, it's always going to be something. Thank god for pathogens! I mean, I hate them, but as soon as we get rid of one, some other nasty one develops. Too bad our health care system can't keep up with it.

Speaking of molds, I will not eat any food that does not mold. For example, margarine. I don't think it molds. Have you seen "Supersize Me"? It's a great movie about what fake foods will do to your health. Rent this movie and watch the extras. The guy bought various McDonalds foods and also similar foods from a regular restaurant. He put the different foods under large glass jars, and let them sit for 6 weeks. Everything molded, except for the McDonalds french fries :o . I was horrified. McDonalds fries were the one thing I thought was relatively "safe" from McDonalds to eat. I won't touch them anymore.

Last night on the news they announced that they *think* they have discovered the cause of IBS. :o

They were saying that they believe its due to bacteria overgrowth....the bacteria which is found in the colon overgrows into the small intestine and causes IBS symptoms.

Oh? And who is the brain surgeon that came up with this :rolleyes: ?! I've believed that IBS is from intestinal pathogens after my GP told me I might have IBS. I hadn't been tested for every possible pathogen because our hospital lab didn't do that. It was only until I went to an acupuncturist could I get properly tested :rolleyes: , and yes, had bacterial dysbiosis.

Thats my opinion anyway. Nobody has to agree with me. :)

That's my story, and I'm stickin' to it :) .

Claire

Rachel--24 Collaborator
I believe that leaky gut can be caused by different things ... this is just my opinion ... it could be foreign invaders, as you say, but I also believe it can be caused by antibiotic overuse. But, that could still be invaders ... antibiotic overuse causes candida, which could be the invader that causes leaky gut.

I have more thoughts about this. :rolleyes:

I do believe lots of factors can damage the gut...chemicals in food, medications, alcohol, drugs, parasites, yeasts, bacteria and the list goes on. Antibiotics is the #1 factor...and as you said its because it kills off the good bacteria.... allowing yeasts to overgrow.....this is what causes the leaky gut.

The antibiotics dont cause the damage but they create the situation which can lead to damage.

The other thing is that regardless of what caused the leaky gut to begin with...once its established not only do food antigens escape the gut...but also bacteria, parasites, fungi, etc.

Every pathogen is able to leave the gut in the same way the food particles do and they can set up camp anywhere in the body. This is why Leaky Gut almost always leads to autoimmune response. The immune system is forced to constantly attack invaders which should not be entering the bloodstream....the pathogens end up in our tissue and when the immune system attacks them...our tissue suffers damage as well.

My theory is that people who are predisposed to Celiac have damage occurring directly in the gut...while other people dont get an immune response to gluten unless the gluten passes through the gut and into the bloodstream. These people can have autoimmune damage anywhere. Also, Celiacs who have leaky gut will suffer damage to other tissue in the body as well. Once gluten escapes the gut the immune response can occur in *any* tissue in the body.

I believe that the immune system targets gluten specifically because it *thinks* it is a pathogen.

What the research shows is that a protein found in the cell wall of Candida is identical to gluten. As a result, the immune system can confuse gluten found in grains for the cell wall of Candida and mount a response against the gluten. The immune cell bound gluten then damages the small intestinal wall as in Celiac disease.

This is exactly what I think is happening with Celiac and gluten intolerance. I think the genetics only play a part in *where* the damage is occurring....I think that the damage to other areas of the body are just as devastating but the tests will usually not be positive for Celiac if the genes arent there.

It makes me wonder. If the damage is occurring within the gut only for those gentically susceptible to Celiac...it would make sense that the people who are having immune response due to gluten getting into the bloodtsream (leaky gut)....for these people if the gut was healed and gluten was *not* leaking into the bloodstream....there should be no autoimmune response occurring.

If the immune system is targeting gluten because it is identical to candida....the people who are able to erradicate candida so that the gut can fully heal should have no immune response to gluten once a healthy gut and flora are reestablished. Its only when candida is still present, the immune sytem is still actively fighting it and the gut is still damaged that gluten would be an issue for people without Celiac.

It makes sense to me...a leaky gut is caused mainly by candida and the leaky gut invites gluten (a protein identical to candida) into the bloodstream where it can be mistaken for candida and attacked.....causing illness when gluten is consumed.

Not to mention that gluten in the bloodstream would cause its own set of problems even if the immune system werent attacking it. Its an opiate and can affect the brain.

These are all just my opinions as to why soooo many people are increasingly sensitive to gluten. Candida has only become more of a serious health concern over the past 20 years....when antibiotics started to be used very frequently. Also, over the years there is a steady increase in the chemicals, preservatives, aspartame, MSG, dyes, sugar and other harmful substances which weaken the immune system....leading to candida overgrowth.

The amount of people suffering from candida has increased immensely...and so has gluten intolerance.

Rachel--24 Collaborator
Have you seen "Supersize Me"? It's a great movie about what fake foods will do to your health. Rent this movie and watch the extras.

I saw "Supersize Me"!!

I would recommend that *everyone* watch it....plus it was kind of amusing. I laughed quite a bit. :lol:

I didnt see the glass jars and the fries not getting moldy though?? I guess that was in the extras?? :unsure:

Anyways my favorite restaraunt (prior to my body completely breaking down on me) was McDonalds!! :o

I was never hard to please....just give me a Big Mac and I'd be a very happy girl.

Even now...after all I've learned...I watched that movie and all I could think about was how much I missed those freakin Big Macs. :ph34r:

Man...did I want one!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.