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Omg...i Might Be On To Something


Rachel--24

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aprilh Apprentice

Rachel,

Have you seen anything out of.....oh.....what's your alien baby's name again?

Anyway, just wondering how that was going....

April :)

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confusedks Enthusiast
Carla,

Hope the stevia doesn't cause problems for you this time.

Ditto!

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Rachel--24 Collaborator

I had my mineral IV tonight. I remembered to wear less tight fitting clthing and so I actually had circulation in my arm during treatment. :D

So yeah...by not cutting off my circulation I found I had better luck with the IV tonight...imagine that! :lol:

I stepped up tonight. I had been on step one mineral IV's all this time. Tonight I went to step 3....which doubled the copper and the zinc. There is a total of 6 steps but I have to move up one at a time. Step 2 and 3 are pretty much the same so thats why I went from 1 to 3.

The next IV I will move up to step 4 which will double the amount of chrominum and selenium.

My minerals are still pretty depleted so I'm glad to be moving up. :)

I clearly have histamine issues but I cant be certain whether or not the problem comes from my immune system being overactive or more of a problem with my body's ability to get rid of histamine...which is causing my immune system to have added stress and to become more reactive.

To me it does seem like my body is unable to rid itself of histamine and it continues to build-up causing alot of inflammation and other undesriable symptoms. Stupid histamine! :angry:

I thought back to all of my allergy testing...and the fact that I never tested allergic to anything! :blink:

How is it that I can be so reactive and yet come up clear on all IgG, IgA and IgE testing. :unsure:

I only had a few positives on IgG...which were all considered to be low reactivity. I have zero IgE reactions and in all Enterolab testing for IgA...I was only positive for gluten but none of the other foods...even though I do react to eggs, yeast, soy and most dairy.

It doesnt make alot of sense to me. :huh:

Now I'm thinking that maybe instead of all of these foods causing reaction which releases histamine....possibly the histamine naturally found in the foods may be wreaking havoc without the foods themselves causing reaction.

That would explain why I dont test positive for any food allergies or intolerances....yet there is a definate build-up of histamine when I eat most foods.

I also notice that if I indulge in high histamine foods...almost immediately I become noticeably more sensitive to chemicals and other environmental toxins. I'm wondering if the histamine build-up is keeping my liver busy??

It can take up to a week or longer to start feeling better once I reach my threshold.

I started to look into the possibility that my body cant eliminate histamine. I learned that copper is needed to eliminate it...so low copper = high histamine. I think other minerals are involved as well...but copper is the main one.

Sooo...basically almost all my minerals are deficient. Copper is the one which is VERY elevated. I think this is because when these minerals cant get into the cells they end up pooling up in the body without any benefit. Copper is one of the minerals definately displaced by mercury.

Also copper is the first thing DMPS will pull out. In most cases where the copper is elevated its because its not getting used and it pools up...the DMPS pulls it out first.

If someone truelly has excess copper they will usually be low in histamine because copper gets rid of it. I dont think thats whats going on with me...I think its the opposite. If this is whats really going on the only way to improve it for me is to contine with chelation and with pumping the minerals back in....eventually my body should be able to start utilizing them again.

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Rpm999 Contributor
Yay RPM on the practitioner.

I agree with you in general about not doing antibiotics if you are toxic. At the same time I want to comment that I think this is a very individual thing. In your case, I respect your decision to avoid abx. In my case, I am convinced that the antibiotics made the difference. At the time of diagnosis I was living on asperin for constant pain, 4 at a time, every 4 hours around the clock just to function. This had worsened year by year for at least 17 years.

I did get worse initially on the antibiotics. I had so much die-off that I was quite miserable. I took one abx for weeks that caused nausea--that was so hard to live with. After that I was toxic enough I had to take a couple weeks break and do some recovery stuff. Meanwhile I was doing lots of support stuff, herbal things, coffee enemas (recommended by my doctor along with a number of other detox methods) and antifungals to prevent candida overload. I did two courses of intermuscular abx, and one course of IV antibiotics which I gave to myself. Sometimes I was taking 2-3 different abx at the same time.

8 months after starting treatment I REALLY began to turn a corner and continued to improve for another year or more before stabilizing. Another year or two later, I had another leap forward after adding samento to my regimen.

All this to say that while we have to weigh the options and be cautious, with lyme there are times when we have to take the leap and do something that seems more risky like long term abx. In the best scenario we do all the treatment we need under a practitioner we trust.

Sherry

yeah i agree, but there's still a difference

i see some people that have had lyme for many years and have had crippling issues, like yourself, such as pain....and i see people who have lyme possible come up, like myself, who have only been sick for a year....and i didn't have any issues before a year ago either, perfect health, even overcame severe athsma i had as a child

and there's people like myself, young, only been sick for a year, yet have about 100 symptoms...just my personal opinion is if it's my case, it's not good to run on abx, you know? if there's so many different things, you need to address them first...whether you have minor lyme or major lyme, your body needs to not have burdens to kick it....i could have a small case of lyme, who knows, like rachel said (i always quote her, lol, cause i learned from her) it's hard to say what's caused by the parasites, what by the lyme, what by the metals....i mean when you're this young and stuck home nearly dying it's different

i think that's a problem, would it be normal if i've only been sick for a year and stuck on medicines for a year? there's always other factors, and who knows, i could have severe parasites, i could have severe deficiencies, i could have bad lyme, i could have small lyme...why jump on something until i have a better idea, you know?...i first got sick when i had a swallowing attack thing that weakened me and have had nothing looked at or treated...i'm just trying to be strategic, i really miss my friends and life, and to have it slip away like this, what else can you do except struggle to have the best approach

some people have lyme and metals come up, and jump on the lyme abx ship....while that's not bad for some people at all definately, what if it's a small case of lyme and severe metal issues? you'd be treating the lyme for so long and wondering why am i still sick, when metals are just rotting you away getting worst...vice versa too, or with anything

oh well, that was my rant lol i've always just been a great thinker and being so young, the fastest safest smartest road to recovery is the best because it's a confusing path to figure out

no offense to anybody by any of what i said either, most people here are much older, and while it's the worst thing dealing with issues at this age, it's great to have the wisdom to know to figure it all out...but at older ages, you're settled at least, license and education are nessesities to get anywhere in life, what stance are you going to be at if you have neither in your later years and get set back even more on it all, you know?

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Rachel--24 Collaborator
Rachel,

Have you seen anything out of.....oh.....what's your alien baby's name again?

Anyway, just wondering how that was going....

April :)

Cobra. :D

I never saw him....he's a stubborn alien baby for sure! :rolleyes:

I have to keep treating for at least 5 months.

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mftnchn Explorer

Rachel is your stomach still rumbling a lot or do you think Cobra has lost the battle?

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mftnchn Explorer

I had another jolt yesterday...some narrowed angles in my eyes...not serious at this point but if this worsens it is a form of glaucoma. I have a very strong history of glaucoma in my family, 4 generations of females. :huh:

I am doing better today, was pretty anxious yesterday. My younger sister already has optic nerve changes and higher pressure.

I don't know if there is any connection to celiac or lyme. Might be interesting to research.

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confusedks Enthusiast
yeah i agree, but there's still a difference

I agree with you. I was willing to get right on abx because I felt I had to start *somewhere.* I also have a lot of problems with lab results, not just symptoms. We can't get ANY lab stuff back with normal range...it is likely related to Lyme, and my LLMD said so.

So, my point is, you're right...it's *ideal* to know what is causing the most problems, but we can't always know that.

I also understand what you're saying about being so young. It is really hard to deal with these chronic illnesses at such a young age. I have had to learn to re-identify who I am. I am no longer known as the "top student" instead, I am known by my friends as "trying really hard." I go to my old school whenever something important is going on....it's sad to have to say good bye to things that you really feel are such a huge part of who you are. But, it's really just more re-identifying who you are.

As a matter of fact, I'm going tomorrow to school to bring balloons and cake for my friends 18th bday! Wohooo! I must try to get out of this illness yuckiness and live my life as much as possible.

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AndreaB Contributor

rpm,

I agree. I also think it is very imporant to know what's going on, so proper treatment protocols can be worked out. I'm glad you found the bioset practitioner and hoping that you'll be able to be referred to someone who does ART as well.

I love ART! I think it's a great muscle testing proceedure.

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AndreaB Contributor
I had another jolt yesterday...some narrowed angles in my eyes...not serious at this point but if this worsens it is a form of glaucoma. I have a very strong history of glaucoma in my family, 4 generations of females. :huh:

Yikes! I hope you can get to the bottom of this.

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confusedks Enthusiast

I am having a major issue....my leg/disc that I was hospitalized for in last June....it's acting up! I can't walk! Oh NO!!!! :(

Oh and, on top of that, I am having menstural cramps from H*** but I don't have my period. :blink: Ahh....my poor body!

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mftnchn Explorer

Donna, I almost forgot. My pectin capsules were $76. :blink: So I think I better look for a cheaper source if possible. The good news is that I am only taking 3 daily, so 270 will last for 3 months. And definitely the capsules are much better for me especially with my travel schedule. The powders are such a pain.

Sherry

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tom Contributor

Hi everyone! :)

I have a question.

Has anyone tried or looked into therapeutic fasting? (Water only, not juice fasting)

Shelly's ready to try it to banish (or reduce?) the mold allergy but it just seems to me we're too designed for daily nourishment. I think I'd be comPLETEly out of it by day2.

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Nyxie63 Apprentice

Carla,

We've got your ice storm this morning. Wheeee!

At the moment, there's a 5-car pileup at the bottom of our hill. Don't think anyone's hurt, just fender benders. Cops finally showed up.

And the salt truck is currently stuck halfway down the hill. :o

They've decided to close off the road. Wonder why? :lol:

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Rachel--24 Collaborator
Rachel is your stomach still rumbling a lot or do you think Cobra has lost the battle?

My stomach still rumbles but as I've been experimenting with new foods I feel that I've learned more about why that is....and I dont think that Cobra is the main culprit as far as that goes.

It seems to be only the high histamine foods...or chemicals which might cause a big release of histamine that are causing the rumbling. If it was cobra I would assume rumbling would occur no matter what I ate...but thats not the case...its totally linked to what I eat. I can go months w/out rumbling depending on what I'm eating.

For example I ate beef and peas for a long time with no rumbling...then I started eating chocolate. After a couple days of chocolate the rumbling is back...along with other symptoms caused by inflammation. Then I start hearing my stomach "talking" during every meal...even just the beef and peas. Eventually this inevitably leads to weight loss.

Its obvious to me that all of the troublesome foods cause inflammation everywhere....and I'm sure thats whats going on in my gut....with the inflammation worsening leaky gut and malabsorption issues.

I dont know if Cobra is still there or not but I dont think killing him is going to resolve this problem for me. <_<

I've always felt that its not the foods themselves causing me reactions...but more likely naturally occuring and/or man-made chemicals casuing me the most problems. Its been hard figuring out exactly which ones though. I think its because of my body's inability to break things down and to eliminate them.

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CarlaB Enthusiast
I agree with you in general about not doing antibiotics if you are toxic. At the same time I want to comment that I think this is a very individual thing.

In the best scenario we do all the treatment we need under a practitioner we trust.

We all have such different treatments, I think this last statement about sums it up.

I think Rachel and I have about the most opposite treatments available, yet we are both getting better. We both recognized what we needed, a practitioner we trusted, went with the recommendations and got better.

I agree that abx would be a problem if you were already toxic. But I also think they can be a good tool. I listed my protocol yesterday (PM to someone on LN), the abx, though really heavy, are still a small part of what I do to get better, just like Sherry.

But when Lyme is so obviously the biggest burden, strong herbs aren't always enough .... sometimes abx are called for. Ideally I think it's best to figure this out in the beginning so you can surprise the buggers .... my LLMD even has described abx as hitting them with a nuclear bomb.

Carla....I did think about the Starbucks vs. Big-Mac...so I decided I need to eat one ASAP. I gotta see if they are equal in their toxicness....you know....for the sake of scientificness. ;)

The Big-Mac just wouldnt be any good without all that crap I just mentioned!!

So yeah....I gotta wait until my tolerance for yummy toxic food goes WAY up. :rolleyes:

Defnitely NOT! Let's see, no bun, no burger, no grease, no pickle, no special sauce ... you're left with lettuce and onions. Yuck.

Okay, for ME I think the Big Mac is less toxic ..... the sugar is worse for ME. :D Honestly, I don't eat out that much .... Adam was trying to get me to eat lunch out with him yesterday .... I talked him into eating lunch at home! I eat a very clean diet, it's just that the infractions are so much more fun to talk about.

Carla,

Hope the stevia doesn't cause problems for you this time.

Thanks. So far so good.

How are you feeling, Andrea?

and there's people like myself, young, only been sick for a year, yet have about 100 symptoms...just my personal opinion is if it's my case, it's not good to run on abx, you know?

no offense to anybody by any of what i said either, most people here are much older, and while it's the worst thing dealing with issues at this age, it's great to have the wisdom to know to figure it all out...but at older ages, you're settled at least, license and education are nessesities to get anywhere in life, what stance are you going to be at if you have neither in your later years and get set back even more on it all, you know?

True, but only because you've already had it a year. If you got bitten and sick today, I'd say get on abx ASAP!

I don't agree with the LLMD who just wanted to slap you on abx and do nothing else, however, at some point they might be necessary. It will be really, really good when you find a practitioner you can work with and trust. I will feel better about what you're doing when a little more is going one with you. :)

You will get your license and education. I actually have had this a long time and the more I think about it, the more symptoms I realize I had in HS -- fatigue, muscle aches, repeated illnesses (bronchitis, stomach flu -- more than anyone I knew), confusion (had a "space cadet" reputation, yet was in honor classes). I was not as disabled by it as possibly you and definitely Kassandra (I'm not remembering all of your symptoms right now).

I remember back in HS eating salads every day for lunch. :blink: I drank ice tea when everyone else drank Coke ..... I won't say I was into health food or completely out of junk food, but I will say I ate better than most .... it was the 70's and I was making myself smoothies for breakfast. :blink:

My immune system was strong enough for years and years to make me not even realized I was "sick".

Now, as I'm easing off abx, I realize that this will be a lifelong battle of balance. BALANCE is going to be a key concept for every one of us here.

We have the bugs ..... we won't get rid of them ... some of us can build the immune system to make it strong enough to get the bug load in control .... others need abx .... in the end, all of us need a strong enough immune system to keep the bug load down and the toxins out.

That's where maintenance will come in --- detoxing, getting enough rest, exercising, eating right, not burning the candle at both ends, etc. This is our goal .... we will all get there in different ways.

Don't be so afraid that you avoid abx if you end up needing them. My daughter who is 14 was on them 8 months and is now off them and on herbs. But if other things show up more important, treat them first. :)

Cobra. :D

I never saw him....he's a stubborn alien baby for sure! :rolleyes:

I have to keep treating for at least 5 months.

Imagine, Rachel having a stubborn parasite, what a shocker! :lol: :lol: :lol:

I had another jolt yesterday...some narrowed angles in my eyes...not serious at this point but if this worsens it is a form of glaucoma. I have a very strong history of glaucoma in my family, 4 generations of females. :huh:

I am doing better today, was pretty anxious yesterday. My younger sister already has optic nerve changes and higher pressure.

I don't know if there is any connection to celiac or lyme. Might be interesting to research.

I hope you don't end up having any problems with this.

I am having a major issue....my leg/disc that I was hospitalized for in last June....it's acting up! I can't walk! Oh NO!!!! :(

Oh and, on top of that, I am having menstural cramps from H*** but I don't have my period. :blink: Ahh....my poor body!

Hang in there. I hope your back feels good enough today so you can make it over to your old school.

Hi everyone! :)

I have a question.

Has anyone tried or looked into therapeutic fasting? (Water only, not juice fasting)

Shelly's ready to try it to banish (or reduce?) the mold allergy but it just seems to me we're too designed for daily nourishment. I think I'd be comPLETEly out of it by day2.

Yes. I've actually read a lot about it.

I think water fasting is dangerous for someone not in good health (not saying you fit that description).

I have gone on a "live food fast" where you only eat raw foods, mostly fruits and vegetables with high water content. This way you are eating things that are not hard on your digestive system (okay, I know raw veggies are hard for those with digestive issues ... this fast is also for those who are relatively healthy), high in nutrition and enzymes.

I did this for as long as a week and included fresh juices (fruit and veggie). I seemed to get a lot of benefit from this, though the first couple days is hard.

Read about the Bragg's .... they are the ones with the apple cider vinegar and liquid aminos.

Also, Fit for Life (Harvey Diamond has a my space).

I think there can be great benefit from it, though I don't think I'll ever be healthy enough to do it (not that I won't feel good, I just don't think it would be good for someone with my health issues).

Carla,

We've got your ice storm this morning. Wheeee!

At the moment, there's a 5-car pileup at the bottom of our hill. Don't think anyone's hurt, just fender benders. Cops finally showed up.

And the salt truck is currently stuck halfway down the hill. :o

They've decided to close off the road. Wonder why? :lol:

We didn't get anything but rain .... but, I just heard a lot of racket on my roof .....
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CarlaB Enthusiast

tom, Google Dr. Shoemaker. He suggests cholestyramine for toxins. You'll find stuff there about dealing with mold allergies.

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NoGluGirl Contributor

Dear Everyone,

I just caught up in my reading. Next is going upstairs and taking my notes.

Then, I can type out my column! This might take a while. Hopefully, it will be on here by afternoon.

Sincerely,

Jin

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dlp252 Apprentice

Well, I THINK I know what caused the skin burning... I think it's a combo of two things...mold and onions. :P It's been raining nearly every day for a few weeks now (we had a couple of dry days here and there, but mostly raining) and someone last night at choir mentioned that she was having problems because of the dampness and mold. DOH! :lol: But, it's been raining for weeks now, and I haven't had the skin burning...BUT the night before I had a bunch of onions. I don't normally eat onions and when I do it's only just a little bit, but I had quite a bit. I also had a lot last night, so I'll see what happens today. I haven't noticed the burning yet, but yesterday it happened towards the middle of the day.

You may want to try lymelog. It's online and it's great! I try to go on every day and log my symptoms. It graphs things for you too! I want to print out my graph and bring it to my LLMD appt. It may be interesting for them to see. Just a thought.

Thanks!!!! I've never heard of lymelog...I'll go check that out when I'm done here.

Donna, love your new pic. :)

Thanks!

Donna, sorry to hear this and hope it is much better very soon.

Thanks!

I had another jolt yesterday...some narrowed angles in my eyes...not serious at this point but if this worsens it is a form of glaucoma. I have a very strong history of glaucoma in my family, 4 generations of females. :huh:

Yikes, scarey! Glad you are feeling better.

I am having a major issue....my leg/disc that I was hospitalized for in last June....it's acting up! I can't walk! Oh NO!!!! :(

Yikes for you too!!!

Donna, I almost forgot. My pectin capsules were $76. :blink: So I think I better look for a cheaper source if possible. The good news is that I am only taking 3 daily, so 270 will last for 3 months. And definitely the capsules are much better for me especially with my travel schedule. The powders are such a pain.

THe powder is DEFINITELY NOT convenient, lol. Very hard to travel with that, so I generally don't, lol.

Has anyone tried or looked into therapeutic fasting? (Water only, not juice fasting)

I have fasted (water only) for two days, but it was for religous reasons. I have to say that I've tried it a couple of times since then (not for religous reasons) and couldn't do it...it was really hard, and I definitely have to agree with what others said about the health issue...I think it might do more harm for me now than good. But I think she is generally healthy outside of the mold issue though, right? Cholestryramine might be a good option, as Carla suggested--MY doctor WON'T give it to me though...he wants me to fix my mold situation. :(

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CarlaB Enthusiast

Well, Donna, I'm sorry, but I have to agree with your doctor ... no sense using a bandaide if the source is still there! Get rid of the mold, then use the Cholestyramine. :) Have you made any choir decisions? Maybe it's time to take them up on their offer.

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dlp252 Apprentice
Well, Donna, I'm sorry, but I have to agree with your doctor ... no sense using a bandaide if the source is still there! Get rid of the mold, then use the Cholestyramine. :) Have you made any choir decisions? Maybe it's time to take them up on their offer.

No choir decisions yet...I'm much happier with recent developments there, but still not certain as to a permanent solution. I still haven't felt right about seeking the church's help, but I did call this morning for info on refinancing my condo.

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mftnchn Explorer
Hi everyone! :)

I have a question.

Has anyone tried or looked into therapeutic fasting? (Water only, not juice fasting)

I've done it about 3 times in order to do food allergy testing. I have felt poorly for 2-3 days, day 2 to day 4 or so, then start to feel better and then very well.

I did this under the care of my allergist though.

Sherry

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mftnchn Explorer

Donna, hope you don't get a repeat of the burning. Also hope the refinancing is a helpful option. I am concerned too that you get rid of the mold, as that seems to be really holding you back.

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confusedks Enthusiast

Out of nowhere I have had a hard time sleeping! I usually take 1/4 of an ambien, but last night and the night before, I had to take 1/2. Well last night that wasn't enough. Okay, I know I'm not taking a lot, but my concern is that I am needing to up my dosage.

And, my leg. I think that may be part of the reason I couldn't sleep well. That whole thing started about 1/2 hour before bed. Maybe it made me nervous/ wired.

I won't be going to my old school because its finals day and I won;t make it there on time. But, my friend is going for a massage at a day spa and while she is there, I'm going to drop off balloons at her house! :)

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confusedks Enthusiast
:o :o :o I got my period! Ahhhhhhh! <_<
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      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
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