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Omg...i Might Be On To Something


Rachel--24

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jerseyangel Proficient
for any of you looking for chicken to try, I recommend considering Kosher chicken...

I buy Empire Chicken from Wegman's--it's fabulous! Regular chicken always gives me problems, but this does not. It's lighter in color than the regular brands I see, and the taste is very clean.

Rachel-

thank you so much for the info. I have an appt (I set it up yesturday) for a new doctor who specializes in heavy metal toxicity and he has a partner he works with who specializes in lyme, they will perform any testing I need and I will bring in all my old tests for them to look at. these are the main things that came out of my doctors appt. yesturday. The doctor sounds pretty good I pm'd andrea alittle more detail on him I can do the same for you- Did you get my last Pm I forgot there was something else I wanted to add to it. Iw ill have to do that later.

Miamia--this is so good to hear! I'm excited for you. :)


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Rachel--24 Collaborator

Miamia....This is wonderful news!! I'm glad you are pushing forward...and I'm glad you are not upset with me. :)

I'm very proud of you and I'm looking forward to hearing how things go with the new Dr.'s. Hopefully your Dr. can move the appt. up for you...if not....its still great that you have something set up.

I'm mad at your Dr. too.....but there is something to look forward to now...and I have a good feeling about this. Hopefully once you start seeing the new Dr.'s you will be alot less confused about everything. :)

I look forward to reading your pm....I'd love to hear more about the new appts. you have set up...and yeah...still interested in whatever else you wanna add to the last pm. :)

Mtndog Collaborator

I want to find a kosher butcher! i was just saying that to my hubby the other night- for lots of reasons. The way the animals are treated is more humane and the meat is definitely better quality.

Mia- Sweetie :wub: :wub: :wub: I didn't know you weren't being treated (or should I say treated well?) You poor thing. Glad you have all these appts set up. If I'm at 32 on the celiac disease 57 and you're at 26, you must be feeling pretty bad from the Lyme. HUG! I think once you focus on this you will see results in other areas. You don't want to end up with celiac disease 57 of 0. I can't imagine how bad that would feel!

Jin- It's funny (not funny ha ha but funny ironic) that you actually said Lyme and fatal in the same sentence. I don't think people realize this. I didn't. Until saturday at my BIL's cookout TWO people said to me, "My God, if you've had it for four years you're lucky you didn't die." :ph34r: I'm too stubborn to do that.

But my friend, the MD, said that many Lyme patients commit suicide because doctors don't know what's wrong with them and they think they are doomed to a life of feeling sick. Or in neuro-Lyme they become so depressed that they commit suicide.

I told her that there were times that I thought about it but I was lucky in that I had two things going for me- a gut feeling that something systemic was going on and that I wasn't going to stop until I got an answer (I'm STUBBORN :P )

and that I had a lot of SUPPORT. I didn't go on to explain but you guys were first and foremost in my mind. If I didn't have you guys to laugh, cry, scientificate (new word?) and just generally hang with I seriously think I would have lost it long ago. :wub: :wub: :wub: :wub: :wub: :wub:

dlp252 Apprentice
the 2 brands I've eaten are Aarons and Empire chicken... I seem to react better to these chicken legs than the WF chicken I've eaten... I also prefer the Kosher lamb chops to the Wegmans organic lamb chops, and it's not even close though that probably depends on the butcher/store and where they get it from...

Ha, I didn't know they had kosher chicken! Glad to hear WF has some...I'll ask and maybe try some this week. I miss chicken!!!

I am so glad for this thread, it really encourages me to keep working on my health.

Ditto!!! Gosh, if it weren't for this thread, I would have NEVER found out about my lyme!!! I doubt I would have given serious consideration to metals either...would have spent the rest of my life thinking I had a candida issue only.

Mia, we do love you and are concerned about your health.

thank you so much for the info. I have an appt (I set it up yesturday) for a new doctor who specializes in heavy metal toxicity and he has a partner he works with who specializes in lyme, they will perform any testing I need and I will bring in all my old tests for them to look at. these are the main things that came out of my doctors appt. yesturday. The doctor sounds pretty good I pm'd andrea alittle more detail on him I can do the same for you- Did you get my last Pm I forgot there was something else I wanted to add to it. Iw ill have to do that later.

DITTO!!!!! I have been very worried about you and I'm glad you are moving forward with a new doctor. It took most of us a few tries before we found the right one. There are lots of ways they can treat the lyme...I'm on herbs and supplements now...the antibiotics will probably come later. The candida can be treated simultaneously if necessary.

yes money is an issue but my health is my top priority. I will find a way to pay I just need to figure out the irght treatment. I would give up anything, borrow money, be in debt, anything!!!, if i could be healthy again!!!

I love you guys-- Thank you so much for your support, concern, and pushing me in the right direction.

:wub: I think you can see that we love you back! :) This is how I feel too...I really can't afford the testing, but I've got to do it...I could feel my health really slipping badly in the last year...it just would have gotten worse and worse I think.

dlp252 Apprentice
Jin- It's funny (not funny ha ha but funny ironic) that you actually said Lyme and fatal in the same sentence. I don't think people realize this. I didn't. Until saturday at my BIL's cookout TWO people said to me, "My God, if you've had it for four years you're lucky you didn't die." :ph34r: I'm too stubborn to do that.

But my friend, the MD, said that many Lyme patients commit suicide because doctors don't know what's wrong with them and they think they are doomed to a life of feeling sick. Or in neuro-Lyme they become so depressed that they commit suicide.

I told her that there were times that I thought about it but I was lucky in that I had two things going for me- a gut feeling that something systemic was going on and that I wasn't going to stop until I got an answer (I'm STUBBORN :P )

and that I had a lot of SUPPORT. I didn't go on to explain but you guys were first and foremost in my mind. If I didn't have you guys to laugh, cry, scientificate (new word?) and just generally hang with I seriously think I would have lost it long ago. :wub: :wub: :wub: :wub: :wub: :wub:

I've been reading on lymenet about some of the people who have died from it...it's really very sad!

I'm pretty stubborn too, but in a lazy sort of way. :P Quite a few of my friends have now heard about this thread. :P I talk to them, but it's not quite the same because none of them really knows about any of the stuff we talk about...I was truly SHOCKED when one of my friends pushed me to get the lyme testing. She knows a little about it, but she's the only one.

And, definitely couldn't talk about scatology with them. :P

nikki-uk Enthusiast
AHA! Thx for clearing that up for me!

I think it was Ricky Gervais I saw on Leno joking that the Brit way of saying herb was right cuz "u can't ignore the H!".

Wish Jay had brought up heir. He also made fun of his own pronunciation of aluminum as aluminIum. Pretty weird to throw in an extra syllable, imo. Y'all don't mess w/ platinum that way do ya? I'll guess no.

Oh NO...don't get me started on the curiously different ways of (mis)pronouncing the English Language!! :lol:

HIDEOUSLY OFF TOPIC!!

:ph34r: I am wondering, Murph, if we should start a separate thread for parsing and such.....words and usages that drive us crazy (like our President (GDub, not Rachel :P ) saying NUKE-you-lar..... :lol:

DARE YOU to start that thread!!!!! :ph34r::)

CarlaB Enthusiast
Carla has mentioned mixing up abx to go after different forms of bacteria, I don't know if Mia's doctor has done that.

Yes, borrelia can change into three different forms. My LLMD believes in treating all three forms simultaneously, otherwise it will switch to the form you're not treating. All three forms require different meds. Then we're treating the babs at the same time, too.

Sorry about talking about you in front of you Mia. :ph34r:

Well, it certainly is better than talking about her behind her back! ;)

Looking at the whole picture....many positive bands on Western Blot, positive urine test (100% specific for Lyme), CD57 count 26, clinincal symptoms...there is really no doubt you need treatment....if he's not willing to treat then I would find a Dr. who will take this seriously....before the disease progresses.

Maybe he has a game plan...I hope he does...but if not I would seek better care. I know there must be some very knowledgable LLMD's in your area who will get you on the right track.

If your new doctor ends up not being an LLMD, my LLMD is about a two hour drive north of the city. He treats mercury, candida, Lyme, and everything else. His care is very comprehesive and I've never been this satisfied with a doctor in my life.

Let me know if you want his number, I'll PM it to you. His already booked till Sept., so if you want to see him, you might want to make the appt. sooner rather than later.

"My God, if you've had it for four years you're lucky you didn't die." :ph34r: I'm too stubborn to do that.

Yeah, you see these people, some of them very young, who get it and die. They also say that with babs it's even more dangerous. I think my immune system must be very strong! I've lived with this a long time and been relatively healthy most of that time. Lots of mystery illnesses and ER visits, but nothing like I'm suffering now.

I told her that there were times that I thought about it but I was lucky in that I had two things going for me- a gut feeling that something systemic was going on and that I wasn't going to stop until I got an answer (I'm STUBBORN :P )

Add to that the fact that I don't believe in it! I figure if it was my time, God would take me.

I certainly am no longer afraid of dying though.

Quite a few of my friends have now heard about this thread. :P I talk to them, but it's not quite the same because none of them really knows about any of the stuff we talk about

And, definitely couldn't talk about scatology with them. :P

My friends know about this thread, but they don't know where it is. ;):lol: We talk about personal stuff here, and with my "face-to-face" friends, I'd rather talk about it in person than have them reading it without my knowledge.

Scatology ... funny ... my nurse from the LLMD called me yesterday to tell me whether or not I had to go off the meds for this most recent test ... I was at Wild Oats ... her FIRST question was asking how my poop was! :lol:

Yesterday, I took two amoxy at lunch, and two at dinner, to try to up my dose. Today, I'm feeling rough. I only took one this morning, but I think I'll take two at lunch and dinner again ... I've got to get this bacterial load down!


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CarlaB Enthusiast
Oh NO...don't get me started on the curiously different ways of (mis)pronouncing the English Language!! :lol:

HIDEOUSLY OFF TOPIC!!

So, do you Brits say the "h" in "herb" or is it silent? Here the "h" is silent ... except when Adam says it. :lol:

nikki-uk Enthusiast
So, do you Brits say the "h" in "herb" or is it silent? Here the "h" is silent ... except when Adam says it. :lol:

IT'S HHHHERB!!!......NEVER SILENT!! :lol:

CarlaB Enthusiast
IT'S HHHHERB!!!......NEVER SILENT!! :lol:

Hmmm, maybe Adam's British and I just didn't know it! :lol::lol: The only reason you would get away with that pronunciation here is because of your accent. ;) People would think you were talking about a guy named "Herb."

AndreaB Contributor
I am very angry at my doctor right now actually and very confused but I do feel good that I have this new appt. set up unfortunatly it is not until July 3rd I am going to call my docs office today though and see if he can do anything about moveing it up - I think he owes me that.

You have a right to be angry, but you need to move on. Look forward to this new doctor and progress. I do hope they can move the appointment up but if not we'll be here to help pass the time. :):wub:

I told her that there were times that I thought about it but I was lucky in that I had two things going for me- a gut feeling that something systemic was going on and that I wasn't going to stop until I got an answer (I'm STUBBORN :P )

and that I had a lot of SUPPORT. I didn't go on to explain but you guys were first and foremost in my mind. If I didn't have you guys to laugh, cry, scientificate (new word?) and just generally hang with I seriously think I would have lost it long ago. :wub: :wub: :wub: :wub: :wub: :wub:

I'm glad you didn't and that you came back to us. Even though I'm not sick (hopefully the removal won't cause too many problems next year) I get a lot of support here too. :wub:

I was truly SHOCKED when one of my friends pushed me to get the lyme testing. She knows a little about it, but she's the only one.

I didn't know that. :)

Yeah, you see these people, some of them very young, who get it and die. They also say that with babs it's even more dangerous. I think my immune system must be very strong! I've lived with this a long time and been relatively healthy most of that time. Lots of mystery illnesses and ER visits, but nothing like I'm suffering now.

Add to that the fact that I don't believe in it! I figure if it was my time, God would take me.

I didn't realize people died so soon into the disease. :( I guess I thought the immune system could keep it in check for awhile like yours did.

I also agree with "when it's our time".

Scatology ... funny ... my nurse from the LLMD called me yesterday to tell me whether or not I had to go off the meds for this most recent test ... I was at Wild Oats ... her FIRST question was asking how my poop was! :lol:

:lol::lol::lol:

Yesterday, I took two amoxy at lunch, and two at dinner, to try to up my dose. Today, I'm feeling rough. I only took one this morning, but I think I'll take two at lunch and dinner again ... I've got to get this bacterial load down!

Boy! Sorry just upping it the one pill per meal brought you down again. :( Hope today goes better for you with dropping the breakfast dose. :)

AndreaB Contributor

Carla,

Any word on any of Chloe's tests yet? I figure you'd hear sometime between this week and next week.

tabasco32 Apprentice

hope everything goes good for you mia

hey rachel I was reading on the gluthione and since I am so toxic is it ok to take the whey protein. ALso what does castor oil packs do for you? should I be taking anything IV? My bloating has gotten worsse.

lisa

p.s.

Isn't a quart of water enyma a lot?

Murph Newbie
I knew fruit was not allowed on the Candida diet at all for those reasons. It is just the canned fruit seems to irritate it more. I think it is the corn syrup. I eat corn and I am fine, but the syrup is too much sugar, and is very bad for the stomach. Many people do not tolerate HFCS.

Yikes u eat THAT?!!

I've come to wonder if HFCS might be blamed in the future for the problems of many people. Read something about how our enzymes haven't evolved to digest it properly.

After a very long time sticking strictly to the anti-candida diet, I can have ONE fruit from a can. Pineapple in its own juice. Just the 2 ingred.

Charlie,

Certainly the Caprylic is good. Made me realize I left a lot out of my story regarding Candida. The Naturopath gave me all sorts of pills and powders. 2 powders & maybe 4 or 5 pills. Almost 2 yrs ago so I don't remember specifics. But I know some weren't available at stores.

I think my prev post may have made it sound like I got better on diet alone, and that would be wrong.

AndreaB Contributor
I've come to wonder if HFCS might be blamed in the future for the problems of many people.

I just read recently in my uswellness meats email that hfcs bypasses the mechanism in the body that says you are full......leading to overeating.......leading to overweight people. Seems to me I've read other stuff before that that stuff is NOT good to eat.

rinne Apprentice
NAC is a supplement, so you don't need a doctor for it. :)

:o:lol: Good.

...

Dear Rinne,

I wonder why the fruit irritates our system more? Perhaps it has more sugar than the chocolate. That is the only thing I can figure. Of course, the magnesium may have something to do with it. That is my take on it.

....

I have heard that honey is more easily tolerated than other sweeteners, it is interesting. I know fruit really causes my tongue to be much whiter. :huh::angry:

Jin.....fruit is LOADED with sugar and fungi/molds.

The riper the fruit...the more fungi/mold it contains.

When a fruit ripens....its actually fermenting....its basically rotting. Fungi and molds are always present in ripening fruit....yeasts are involved in the fermentation process.

Thee would be a higher content of fungi in ripe fruit than in chocolate. If someone has candida they would likely be very sensitive to molds and fungi in fruit. Fruit is not allowed on a candida diet.

Thank you Rachel, more bad news. :P:lol:

certain insurances cover the CD57 test... it's done through Labcorp so I think all Horizon insurances will cover the test... I don't know what the out of pocket cost would be..

I know a friend had it and she was dealing with Kaiser, though I am not positive that Kaiser did the test. Sorry, that is not so helpful.

Ok I keep premature posting so sorry if anything I says gets repetative. Rachel- I never think of you as butting in or anything like that I soooooo...... appreciate your opinion and advice- that goes for everyone here- It helps me to stay on track and push to get the right treatment. I am very angry at my doctor right now actually and very confused but I do feel good that I have this new appt. set up unfortunatly it is not until July 3rd I am going to call my docs office today though and see if he can do anything about moveing it up - I think he owes me that.

Miamia, I think you have every right to be angry with your doctor. I suspect that you are a very loyal person but perhaps now you can see that even well intentioned people can do harm if they are not paying attention.

It blows me away that you were the first one tested and had tested so strongly positive months before Rachel and I were tested. :angry::( I wish there was one emoticon for that feeling.

The important thing to do though is get the proper treatment, trust me bitterness does no good, :ph34r::lol: and I am so glad that you are doing that now. :wub:

.....

and that I had a lot of SUPPORT. I didn't go on to explain but you guys were first and foremost in my mind. If I didn't have you guys to laugh, cry, scientificate (new word?) and just generally hang with I seriously think I would have lost it long ago. :wub:

:wub:

Oh NO...don't get me started on the curiously different ways of (mis)pronouncing the English Language!! :lol:

HIDEOUSLY OFF TOPIC!!

DARE YOU to start that thread!!!!! :ph34r::)

HEINOUSLY SO! :lol:

Rachel--24 Collaborator
hope everything goes good for you mia

hey rachel I was reading on the gluthione and since I am so toxic is it ok to take the whey protein. ALso what does castor oil packs do for you? should I be taking anything IV? My bloating has gotten worsse.

lisa

p.s.

Isn't a quart of water enyma a lot?

Lisa...I do think you should take the whey....just not in the massive amounts that your Dr. suggested.

How much did you take when you got a reaction to it....was it alot??

Too much of anything at once is gonna be a shock to your system....especially something that promotes detox. Too much will make you feel worse.

I started out with about 1/3 of a scoop and then worked my way up...I'm at one scoop now. I havent had any problems with it at all....and I actually like the taste of it. Another good thing to take is minerals....multi-minerals.

The one I take is free of everything except the minerals....no vitamins....no other "extra stuff".

This is the one my Dr. sent to me...

Open Original Shared Link .com/Cardiovascular-Resea...s/dp/B00014GCWK

The reason she has me on this is to build up the minerals in my body because they are usually depleted during chelation. You need adequate amounts of minerals during the detox period and to replace what might get lost during chelation.

Seems like the minerals and amino acids in the whey go a long way in protecting our bodies from toxic metals. When we get better...its probably a good idea to keep taking this stuff for the added protection....too much of some minerals can be bad too but not enough definately leaves room for mercury to settle in.

After you get all your amalgams out you will probably want to be tested for vit/mineral deficiencies.

Castor oil packs:

The easiest way to use castor oil is to massage it into the body on the problem spot, along the spinal cord, the abdomen, or following the lymph drainage patterns. It can also be taken internally, but is a strong laxative and is used to treat constipation.

Despite being a simple procedure, the castor oil pack can produce good results. For the strongest effect, use a hot oil pack. Physiological effects of the castor oil pack include stimulating the liver, increasing eliminations, relieving pain, increasing lymphatic circulation, improving gastrointestinal function, increasing relaxation and reducing inflammation.

Heres some links for the castor oil packs.

Open Original Shared Link

Open Original Shared Link

I got everything I needed to make the pack at WF...they sell the wool cloth and oil. The heating pad came from Walgreens. Its kind of messy with the oil...you have to make sure you dont get it on anything because it'll stain. Other than that its pretty easy to do.

Conditions which have been responsive to castor oil applications include:

skin keratosis

ringworm

fungal and bacterial infections

wounds

abdominal stretch marks (prevention)

bursitis

sebaceous cysts

warts

Rachel--24 Collaborator
Isn't a quart of water enyma a lot?

Yeah...I fill up my enema bag with one quart water (or coffee) and just take as much as I can hold. I usually do two....so its not the full quart at once.

The second enema I can hold alot more....probably cuz any obstructions got flushed out or something.

The second one is always more comfortable for me and I can hold it a long time....its also more effective....probably cuz I'm retaining more (its reaching higher into the colon?) and I'm holding it longer...so its loosening up more toxins and waste.

It usually ends up that the first enema I use like 1/4 of the water....and the second one I'm using 3/4 (everything thats left). Its working pretty well for me so far.

Rachel--24 Collaborator
I know fruit really causes my tongue to be much whiter. :huh::angry:

Thank you Rachel, more bad news. :P:lol:

Sorry for the the bad news about the fruit....but yeah...its feeding the candida....hence the white tongue.

:P <------------This guy doesnt have candida...note the lack of white coating. :lol:

CarlaB Enthusiast

I had the BEST lunch! I was craving fresh berries, so maybe there was something in them that I needed. ;) So, I bought strawberries, raspberries, and frozen blueberries. I also made whipped cream from whipping cream (no sugar) ... it was heavenly and LOADED with calories because I was generous with the whipped cream! :P

Boy! Sorry just upping it the one pill per meal brought you down again. :( Hope today goes better for you with dropping the breakfast dose. :)

Thanks. I only took one at breakfast yesterday, too, then two at each of the other doses. So, I stayed with the same dosage today. I have to get used to this stuff and it's going to hurt every time I ramp up. I've talked with someone on Lymenet who takes a very large dose of it, and they said it hurt every single time they added some.

I'm doing better than last week though, but not as good as yesterday.

Carla,

Any word on any of Chloe's tests yet? I figure you'd hear sometime between this week and next week.

So far, everything that's come back has been normal. We're waiting on the IGeneX. I haven't been able to do the urine test with her for heavy metals, but we should be able to do that this week.

CarlaB Enthusiast
:P <------------This guy doesnt have candida...note the lack of white coating. :lol:

That's what my tongue looks like, too ... see? :P

Morgan had the same lunch as me .... when I told her the whipped cream had 50 calories per tbsp., she wasn't happy.

I'll have to start taking 2 or three tbsp. to Starbucks with me to increas the calories of my latte. Their whipped cream is the real stuff, but it has sugar. That sounds REALLY good. My latte is about the only calories I eat in a day that doesn't cause stomach upset ... the berries didn't either.

AndreaB Contributor
I'll have to start taking 2 or three tbsp. to Starbucks with me to increas the calories of my latte. Their whipped cream is the real stuff, but it has sugar. That sounds REALLY good. My latte is about the only calories I eat in a day that doesn't cause stomach upset ... the berries didn't either.

You've got to get your food and calories where you can. :P

DingoGirl Enthusiast
Oh NO...don't get me started on the curiously different ways of (mis)pronouncing the English Language!! :lol:

HIDEOUSLY OFF TOPIC!!

DARE YOU to start that thread!!!!! :ph34r::)

:ph34r::lol: no....won't...do...it.........staying OFF computer.......very busy, actually doing small paintings.....

must..............stay...........away............from.............

COMPUTER!!!!! :P

I had the BEST lunch! I was craving fresh berries, so maybe there was something in them that I needed. ;) So, I bought strawberries, raspberries, and frozen blueberries. I also made whipped cream from whipping cream (no sugar) ... it was heavenly and LOADED with calories because I was generous with the whipped cream! :P

OMG - - - this sounds like heaven.......I have to FIGHT to keep weight off, for the first time in my life....gained 25 pounds with gluten removal and oh, how I do miss being a size 2.... :( yeah, yeah, I know it wasn't healthy....but I did like that, all of my life......sometimes, I think I'll do a two-week gluten challenge just to lose a quick 10 pounds..... :ph34r:

help me......

Hi everybody! ;) just a drive-by - - - doing about one million things today, while I procrastinate in my job hunt. ;)

tabasco32 Apprentice

rachel is it ok for me to do the whey and chlorella now? I have no more insurance and money for my teeth. what do I do till then? I am scared to get more sick. My stomach burns and I feel pressure in my throat. Why is that? MY intestines hurt before a bowel movement. Maybe the whole flax seed I take is irritating it? DO you use an enyma everyday? I need milk of magnesia but I hate to use it. Dont know what else to do. I am goint to my naturopath on thursday for acupuncture.

CarlaB Enthusiast
sometimes, I think I'll do a two-week gluten challenge just to lose a quick 10 pounds..... :ph34r:

Just because it's gluten causing the diarrhea instead of a laxative, doesn't mean it's not bulimia. You don't want to go there. ;) You are probably at a healthier weight. I USED to have to watch my weight ... I'm sure when I'm healthy I will again.

My biggest problem now is everything I eat makes me sick. Drinking doesn't, so a latte every day is a good source of calories. With it making me sick, I have little appetite.

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      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
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