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

mftnchn Explorer
mftnchn
Posted

I'm reading along but too busy to reply too much.

New development is that my hubby left this morning with one of our visitors who just arrived (counselor) to go to the disaster site for several days. He'll be able to assess if I am needed and whether the situation will be okay for me to go. Yay! I feel better about this. Also that we can offer more immediate help this way.

Sherry

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
AndreaB
Posted
So far so good still....still no signs of serious herxing. Yay!

Yay! :D

New development is that my hubby left this morning with one of our visitors who just arrived (counselor) to go to the disaster site for several days. He'll be able to assess if I am needed and whether the situation will be okay for me to go. Yay! I feel better about this. Also that we can offer more immediate help this way.

That's great! I'll be looking for updates. :)

Carla,

That's great that you can site read and that you are good at covering up mistakes.

Glad to hear the meds are doing good for you.

confusedks Enthusiast
confusedks
Posted

Donna,

Do the think thin bars have soy in them? I used to LOVE those! :P

ShadowSwallow Newbie
ShadowSwallow
Posted

Donna,

Sorry you're not sleeping, but I'm glad you're not herxing badly from the meds!

Carla,

That's great the meds are working out!!! :D :D

Everyone,

I'm doing better today, but I think yesterday was mainly a cold. I have a sore throat now. :(

Birdy

confusedks Enthusiast
confusedks
Posted

Donna,

When you do your B12 shots (or when you DID), do you feel better on those days? I don't know if it was coincidental, but I felt a lot better today...it was a B12 day. Hmm...

mftnchn Explorer
mftnchn
Posted

Kassandra,

I notice improvement on my B12 and Meyer's B shot day. Now I am cutting back slightly on the dosages because I seem to get keyed up and wanted to see if that was the reason. Not sure still, if so, it is not hitting until several hours after the shots.

I suspect that something I am taking or eating is behind this being hit by tension at times.

Sherry

mftnchn Explorer
mftnchn
Posted

Donna I am thrilled things are moving foward and watching for your updates.

Carla, that's great you are feeling better again. Sure convinces us that we are infected when we respond like this to abx, right?

Kassandra, I am still hoping for info on iron...., glad you are feeling better.

Birdy, hope your cold is better soon.

Rachel, hope these IVs go well and make a huge difference this time.

Andrea, thanks for the supportive words. I'll keep you updated.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
Carla, that's great you are feeling better again. Sure convinces us that we are infected when we respond like this to abx, right?

Yes!

miamia Rookie
miamia
Posted

Donna-

I had the same reaction as rachel I was ok with the DMPS it was the minerals and such that killed me.

Oh I really doubt you go to bed earlier than me.

Wow, BRAVE soul! :lol: Course, at least you can sight read!!! :P My good friend Becky had to do that today too because she practiced the wrong song. :lol: :lol: She has to play keyboard for the first service.

Yeah, your sleep pattern sounds almost exactly like mine, but I start waking up at 1:00. I probably go to bed a little earlier than you do though. :P

The Think Thin bars are pretty good. They've got lots of good ingredients even spirulina I think (hence the green in the name, lol). They are gluten and dairy free, but I think they are produced in a factory that produces gluten items. Still, if you're eating what you've been eating, I think that would be okay. :lol: I put cashew butter on them. Yummm.

Yeah, I was pretty sure that the DMPS was good for you, but the minerals weren't, but I couldn't remember for sure. I'm thinking I'm going to feel fine...I'm trying to decide if I want to make an appointment to get new tires on Saturday. :lol:

miamia Rookie
miamia
Posted

is anyone still doing enemas?

CarlaB Enthusiast
CarlaB
Posted
is anyone still doing enemas?

Yes. :ph34r:

mftnchn Explorer
mftnchn
Posted
is anyone still doing enemas?

Yep, every day. It's my detox lifeline. After the natural bm in the morning...

Sherry

dlp252 Apprentice
dlp252
Posted
Donna,

Do the think thin bars have soy in them? I used to LOVE those! :P

Hum, I can't remember. I used to eat them too, but haven't in a while.

Donna,

When you do your B12 shots (or when you DID), do you feel better on those days? I don't know if it was coincidental, but I felt a lot better today...it was a B12 day. Hmm...

It's funny because it wasn't a huge noticable difference, but there was a difference on shot days. I just seemed to be happier, more cheerful...cracking myself up kind of thing. :lol: I haven't seen my LLMD yet (he's the one who wanted me to do them), but the other doctor I saw last week said that I could stop them if I wanted. She told me about a patient of hers who can tell when it's time to get a shot, so I'm thinking yeah, it would make us feel better. Remember my crazy happy posts on the EM thread, lol...that was on a shot day! :lol: :lol:

dlp252 Apprentice
dlp252
Posted

Yay, just called the pharmacy and they said the amphotericin was fine for a couple of days without refrigeration. They put that sticker on the bottle so we'll refrigerate it when we get it.

Three whole days now and still no herxing from the Tindamax, but I AM seeing signs that the antifungal is working. :lol::ph34r:

AndreaB Contributor
AndreaB
Posted

Good news all around Donna. :)

I'm still reading right along. Not much happening over here......aside from colds.

miamia Rookie
miamia
Posted
Yep, every day. It's my detox lifeline. After the natural bm in the morning...

Sherry

can i just ask you how long does the whole enema procedure usually take you

confusedks Enthusiast
confusedks
Posted

Sherry...I will get you the iron info you asked for. I keep forgetting, and right now I have to run out the door for an appt. (The one I overslept for last week, LOL! except I woke up on time! :) )

CarlaB Enthusiast
CarlaB
Posted
can i just ask you how long does the whole enema procedure usually take you

I make the coffee the night before so I don't have to wait for it to cool, but you may want to put it in a sink of warm water to heat it back up a little prior to using it.

It takes about a half hour, including preparing the enema bag, cleaning the bathroom floor (before, not after :lol: ), retaining for 15 min., etc.

dlp252 Apprentice
dlp252
Posted
... cleaning the bathroom floor (before, not after :lol: )

:lol: Another good reason no ecoffee for me, lol. If I had to clean the bathroom floor FIRST, well, let's just say that's not going to happen. :lol: (Besides, couldn't lay down on the floor if I wanted to--it's not big enough. :P

CarlaB Enthusiast
CarlaB
Posted
:lol: Another good reason no ecoffee for me, lol. If I had to clean the bathroom floor FIRST, well, let's just say that's not going to happen. :lol: (Besides, couldn't lay down on the floor if I wanted to--it's not big enough. :P

I'm a clean freak ... of course, Lyme has made it so I'm not nearly so bad .... but, I don't like lying down on the bathroom floor when it has hair all over it ... your floor might not be as bad as mine since you don't share your bathroom with a man! :lol: I then use a towel on the clean floor for comfort. :)

And, you don't have to clean it afterward .... it's just not messy like that. :P And when you're cleaning it daily, it's never a big chore anyway.

Okay, herx kicked in. God must have wanted me to play at the funeral this morning because I took two Advil with my thyroid meds, and felt FINE. Last night I started having neck/shoulder/upper back pain. This morning it hurt, so I took the Advil. As soon as I got back from the funeral, I lied down on the bed and haven't been able to hardly more. I took a Vicodin I've been saving for a time like this .... it's barely making a dent in the pain. :(

I was feeling so much better on the new meds. :) This is my "day four flare" but it's day five .... my monthly flare is due about the 30th. After that, I'm planning on being able to play racquetball again. B)

Green12 Enthusiast
Green12
Posted

Hi guys, I am so far behind I am just going to jump right in.

Things have been a little crazy with me since I have gotten my LEAP test back, I've had to totally rehaul my diet. It's an interesting test and I am still learning about it and familiarizing myself with it as I read through the huge amount of info I got back with my results. My Dr has had a lot of success with it, especially with his patients that have multiple food/chemical reactivity.

Basically you get back a list of your red foods (highest reactivity), yellow foods (moderate activity), and green foods (no reactivity). You have to completely avoid your red and yellow foods/substances because these are the things that are causing your immune system to fire, and over fire.

This works in phases, you take everything out and reintroduce your green foods a little at a time in 5 day increments, then after 5 phases or 25 days, you do a 3 day rotation diet with the foods from the first 5 phases. All of this is to allow for the immune system to calm down and then strengthen.

I actually still have a lot to choose from to eat, but also a lot that I can't eat. I am encouraged since my Dr has had so many patients turn around their food issues with it, and I feel I have nothing to lose so I am going to give it a try. The first phase has been the hardest, but I have one more day and then I am on to phase 2.

I also had and ASYRA and LED treatment done yesterday. We cleared sulpher, which my practitioner thinks that is going to make a significant difference for me.

And that about summarizes it. I hope everyone is well, I've thought about you lots :)

Guest LittleMissAllergy
Guest LittleMissAllergy
Posted

OMG

This is insanely ironic.

Yesterday my doctor suggested a coffee enema because he thinks im having gall bladder issues, so my mom went out to buy a bag. We're kind of apprehensive to do it, and we're actually having some PHYSICAL issues being successful. SO AKWARD. lol. So we've been researching on how to do it, then i come here, and boom...you're talking about it!

CarlaB Enthusiast
CarlaB
Posted

Oh, yes, many of us have been doing them a long time.

Here's my recipe --

1 quart purified water

4 tbsp. organic coffee with caffeine

I boil the water, pour it on the coffee in a french press, stir. After at least three minutes, I push down the plunger.

COOL the coffee. It's most comfortable if it's warm like you would have baby's formula.

You might want to start with a weaker coffee and build up to 4 tbsp.

Put it in the enema bag, hang the bag on the doorknob. You will want a lubricant to help insert the tip. Let the coffee go in ..... at first you may do half at a time. Hold for 15 min. (if you can). I find the more toxic I am, the less time I can hold it.

I lie on the bathroom floor with a radio and a clock on a towel. :) I've read it's best to lay on your right side.

I also like to use Preparation H wipes .... they are witch hazel as opposed to all the chemicals that the others have. You don't have to have hemorrhoids to use them. :)

dlp252 Apprentice
dlp252
Posted
I also had and ASYRA and LED treatment done yesterday. We cleared sulpher, which my practitioner thinks that is going to make a significant difference for me.

And that about summarizes it. I hope everyone is well, I've thought about you lots :)

Very exciting report! :) I'm thinking the sulphur pathway will make a difference too! I was getting a little worried about you!

This is insanely ironic.

Yep, we talk about all kinds of stuff here and it almost always comes at a good time. :P

AndreaB Contributor
AndreaB
Posted

Julie,

That LEAP does sound like a lot to learn, aside from diet adjustments. Yay for almost being on phase 2. :D

Was that the sulpha group you had done? That's usually the first one recommended. Sulpha/Sulfer is a big one.

Archived

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

Go to topic listing

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

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

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    4. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    5. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,255
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.