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Rachel--24

Omg...i Might Be On To Something

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Just popping in to say hi to everyone.

I had another angioedema outbreak and have been pretty sick. The last few days I've been researching like mad, reading all kinds of medical journals, to try to find a solution. Mainstream medical doesn't really offer anything as a cure for chronic angioedema.....other than experimental androgen drugs that turns out cause liver tumors, which have now been taken off the market :rolleyes:

Your scientificness was great Rachel, so it looks like I popped in just at the right time. I love when that happens- the universe dropping little clues :D

The most recent article I read talked about the link between chronic angioedema and thyroid disfunction, specifically thyroid auto-antibodies, and connective tissue diseases and other vasculitis diseases, as you talked about with the Human Parvovirus B19- VERY INTERESTING.

I am pretty much convinced at this point the angioedema is coming from a pathogenic root, because I have ruled out almost everything else as a cause (food allergy, reaction to medication, etc.).

In other news I completed the 5k!! It was a lot of fun, there was a great turn out and a lot of money raised for the local Alzheimer's Association. I am thrilled because a lot of the funds are going to resources that serve to support Alzheimer's patients and their families and caregivers, so important.

I've had you guys on my mind and hope all is well with everyone. Keep on keeping on!!

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Hi Julie! :wub:

I was thinking you may have had an outbreak since I hadn't heard from you. :( Hope you're on the mend and that what Rachel posted will help you find the source of your outbreaks.

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Your scientificness was great Rachel, so it looks like I popped in just at the right time. I love when that happens- the universe dropping little clues :D

The most recent article I read talked about the link between chronic angioedema and thyroid disfunction, specifically thyroid auto-antibodies, and connective tissue diseases and other vasculitis diseases, as you talked about with the Human Parvovirus B19- VERY INTERESTING.

Seeee...I just knew there was a reason I wanted to copy/paste that scientificness. :)

Its interesting about the Parvovirus.....and I actually almost didnt include that in my post cuz I figured "Who's really gonna be interested in Parvovirus??" :huh:

But I left it there and now both you and Andrea find that part most interesting!

Funny how that happens. :)

I am pretty much convinced at this point the angioedema is coming from a pathogenic root

I think I would agree with this. Dont give up!! There *is* an answer.....and you will find it! :)

In other news I completed the 5k!! It was a lot of fun, there was a great turn out and a lot of money raised for the local Alzheimer's Association. I am thrilled because a lot of the funds are going to resources that serve to support Alzheimer's patients and their families and caregivers, so important.

What a great accomplishment Julie!! :)

I'm glad you were able to do something so meaningful and that you had a good time doin it...thats awesome!

Sorry about the latest outbreak...hang in there. When you need support or scientificness we are always here for you! :wub:

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HI GUYS,

I HAVEN'T BEEN ON D/S EITHER POSTING.

GOOD TO HEARD ABOUT THE PARVO...I'M SO OUT OF THE LOOP I THOUGHT IT WAS A DOG VIRUS...OI :blink:

I'LL COME ON AND LET YOU GUYS NOTICE WHEN I POST SOME MORE PHOTOS

RACHEL, GLAD YOU CAME ON TO SEE MY PHOTOS...THEY ARE FUN AND YOU CAN GET A GOOD SENSE OF MY TIME SPENT IN THE GARDEN.

THOSE AREN'T LOCKED.

SINCE THAT FORUM IS SO LARGE WITH SO MANY DIFFERENT COMMUNITIES.......WE HAVE LOTS OF TROLLS...ALWAYS.......SO THEY DID THE LOCKED JOURNALS .........WHICH I APPRECIATE.

I'M SO GLAD ROBBIN HAS UN LOCKED THE AUG 17TH ONE ...........IT IS JUST AMAZING HOW FAR SHE HAS PROGRESSED.

LOVE TO YOU ALL WHO I MISSED SAYING 'HI' TOO.

JUDY

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Judy...Parvo really is a dog virus.

Apparantly humans can get it too....I had no idea until the Dr. told me it was there. :blink:

Yup....your garden is sooo nice. I love all the pictures, the woodpecker too! The patio looks really peaceful and relaxing. :)

I have to go back to see if I've already read the August 17th entry. I read the first ones that she wrote and then whatever hasnt been locked up since then.

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At the suggestion of NoGluGirl I am asking for some help. (I posted in the "coping" section and got some good responses, but I would love your suggestions.)

I was diagnosed June 28th with celiac disease.

I then was diagnosed with a bacterial overgrowth. (I finished a second round of antibiotics last week)

I am not getting any better, in fact I am getting worse.

My current symptoms:

-burping, sometimes with regurgitation

-heartburn

-abdomen bloating, distention, pressure (half way through the day I often cannot button my pants)

-sharp stabbing abdominal pain (not in one particular area, but so sever I cannot walk)

-exhaustion, fatigue

-C & D

-rectal bleeding

I have had

-endoscopy (no biopsy)

-conolonsopy - normal

-abdominal ultrasound - normal

-ovarian/uterian ultrasound - normal

-I am on probitoics

-parasite test - no ovum found

-blood work normal (besides the celiac blood work that I was diagnosed from)

-urine normal (kidneys, pancreas, appendix)

I am waiting on a different parasite test that I should get back this week.

During the first round of antibiotics I felt good. Not 100%, but I had energy, my abdomen remained on size throughout the day, I was truly starting to feel better. 4 days later I landed in the ER because the pain was so bad, but they sent me home when they couldn't find out why.

I am at a loss.

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I have a question for all of you. I have been well, but it has been raining like crazy here in LA. We had leaks from our skylight above out stairs last winter, but then it was repaired and for the rest of rainy season (only like 2 days...lol) it was fine. My question is...it REEKS of mold in here and it has been reading. Could this have been part of the reason I have been so unexplainably exhausted?! Since forever? It is on carpeting and we visibly saw mold last year and since it has happened again starting yesterday, we can smell the mold/mildew again. I wonder if this is part of my issue?! Any thoughts?

Kassandra

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Could this have been part of the reason I have been so unexplainably exhausted?! Since forever? It is on carpeting and we visibly saw mold last year and since it has happened again starting yesterday, we can smell the mold/mildew again. I wonder if this is part of my issue?! Any thoughts?

Ummm...my guess is YES!! :o

I would say that for sure this is a huge part of your problem. This would explain alot of what is going on with you.

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At the suggestion of NoGluGirl I am asking for some help. (I posted in the "coping" section and got some good responses, but I would love your suggestions.)

Hi Melmak,

I read your thread....there wasnt much said about diet. Since you've just recently been diagnosed what do you eat?? Were you told to go dairy free for awhile??

Why does your new Dr. question your Celiac diagnosis? Was your bloodwork positive for IgA and/or positive tTG?

I dont know what your diet is like but you might need to eliminate dairy for awhile if you havent already. You might also want to consider sticking to a more plain diet of meat and veggies and see how you feel.

Then there is the fact that you felt great on antibiotics and ended up in the ER after you discontinued them. I think its significant. Did you take probiotics while you were on the antibiotics?

You could still have bacteria overgrowth...that would be my guess.

Were you tested for H.Pylori?? I cant remember if you mentioned that or not.

Parasites are more common than most people like to think...unfortunately testing isnt too great. Theres like a gazzilion different types of parasites but they only test for about 50...and your Dr. might test you for 3.

Yeast is another possibility and it could be both yeast and bacteria overgrowth.

I think it would be a really good idea to get simple with your diet while you try to figure this out. That alone might make a big difference.

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Ummm...my guess is YES!! :o

I would say that for sure this is a huge part of your problem. This would explain alot of what is going on with you.

I agree. :)

Melmak,

Rachel has some good advice. I've had testing done through the alternative doctors and was found to have a parasite, although it's not causing me any obvious problems. I've also got candida, but I'm assuming it's not too bad as my doctor is just using supplements to take care of it and didn't tell me to go on the anti-candida diet.

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Hello, Melmark,

Welcome! Can you also tell us what antibiotics you were on and for how long?

Sounds like you have almost totally digestive, intestinal symptoms correct? What happens when you fast? Does it get better?

I also got worse after going gluten-free. I'd wonder as well about milk sensitivity, and then other intolerances. For me it is gluten, milk, and soy. Others here have different ones. The best way to check is elimination diet not testing.

I'd also say a strong probiotic is important.

H pylori is one to consider for sure. If you have that, try Mastica. It is mastic gum which is very effective on the h pylori.

There's a few other things some of us have found to help. Oregano oil for some of our group. For me, DGL (a licorice preparation) really works well for indigestion.

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mftnchn,

Thanks for the welcome!

I was on xafaxin 400mg 3x daily, 10 days - I did two cycles of this.

I would say yes, most of the pain goes away when I do not eat, but not all. I am often awoken in the middle of the night from pain.

I have been using two different probiotic companies, one with 6 strains, the other with 8.

I just cut coffee, tea, caffeine out again and I just cut out milk/dairy this weekend. (I have been really hesitant to making any more diary restrictions, but after spending all of Friday night in the bathroom, I consider myself READY)

I don't think its H pylori, because the endoscopy in May showed normal stomach lining. I was diagnosed with the bacterial overgrowth via a breath test, which is not type specific.

Rachel - I have a rather extensive food/pain/elimination diary.

Brown rice has become my staple.

Breakfast usually consists of brown rice porridge (made by me, with nuts/flax seeds) or gluten-free corn flakes w/almond milk or gluten-free toast

Lunch - tilapia coconut curry, meat/chicken with collards/mustard greens, squash or gluten-free bread sandwich w/almond butter & honey or yogurt or left overs

Snack - usually a piece of fruit

Dinner - now this is where I usually come home hungry because my goal for the day is to eat as little food as possible so I don't bloat up and I come home and pretty much eat whatever is gluten free and in site (potato chips, gluten-free cookies, gluten-free bagel or sometimes I make a meal with veggies and brown rice)

I love coffee, more than I have words for, but I am giving it up again. (I usually had 2 cups a day+)

-The doctor is questioning the diagnosis because it was by blood test, not by endoscopy.

Sunday, September 16

10:30:00 probiotics, gluten-free apple pie, halva wheezy

11:45:00 stool - soft, thin

16:30:00 kale, mushrooms, onions, chicken

17:45:00 probiotics stool - soft, thin

18:00:00 tea, potato chips, almonds

19:00:00 bloated, stool - soft thin

21:00:00 probiotics

21:45:00 bloated stool - soft, thin

Monday, September 17

8:30:00 gluten-free cornbread wheezy

9:15:00 coffee

13:20:00 gluten-free sandwich, motz, tom, basil

14:20:00 dull, throbbing, lower right abdomen

14:30:00 coffee

15:30:00 burping pain lower right abdomen

16:00:00 probiotics

16:30:00 throbbing between ribs

16:45:00 bloating, not fitting in pants

17:15:00 burping/acidic pain pressure, lower abdomen

17:30:00 acid/heartburn ginger

18:15:00 gluten-free pumpkin muffin

19:00:00 chicken, zucchini, rice soup

20:30:00 mochi, probiotics

21:15:00 cal/mag/cit pain, pressure, bloating lower abdomen

23:00:00 zyrtec

Tuesday, September 18

6:45:00 sharp stabbing pain, lower abdomen (woke me up)

8:15:00 longest poop ever, blood when wiping

8:45:00 mochi

9:00:00 heavy feeling in lower abdomen, bloated, couldn't fit in pants

9:20:00 tea

10:15:00 bloated, pressure in lower ab

10:40:00 heartburn

11:15:00 tea

12:30:00 nectarine

13:15:00 brown rice, chicken soup

13:40:00 popcorn

14:00:00 probiotics, coffee

14:15:00 headache

15:30:00 bloated, pressure

16:00:00 heartburn, burping formed, constipated

16:45:00 bloated, pressure, pain near navel

17:30:00 gluten-free cookie, halva

18:45:00 stool - formed

Thank you all for your help!

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Dear Melmak5,

When I was into my 5th month(now 7)glutenfree, I had those horrible pains, some reflux, where I had to pop a few nexium,

stomach and rib pain. I still poop strangely. I don't understand why we have those never ending ones either. I have never seen anything like it. I still get the same pains, but no where like they were. Did you say if you tested for candida? That can make you feel just as miserable as the gluten intolerance. If our immune systems are down, and we aren't eating right(of course before we were diagnosed, who wanted to eat?) there is room for yeast overgrowth, and what havoc it wreaks. I know that I do like to have my 2 cups of coffee. Gluten, I don't really care, but don't try to take my coffee away. I know its seems hard to believe, because I didn't also, but it does get better. :) Janet

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I was on xafaxin 400mg 3x daily, 10 days - I did two cycles of this.

What is Xafaxin?? I've never heard of it (but I'm no expert on antibiotics either)....looked it up and could not find much of anything about it?? What I did read said it was a new drug (this was written in 2005)...it appeared that the person who was taking it was using it for liver disease??

So I'm confused about the xafaxin because I cant find any info. on it at all....I wanted to see what kinds of treatments its used for...since it seemed to work for you (at least in the beginning).

Anyways...its great that you keep a detailed journal!

I think eliminating dairy and coffee will more than likely give you some relief but I would also cut out the processed stuff...all the gluten free goodies, chips, etc.

It sucks... but alot of people find that they feel much better without them.

If that doesnt work and the bloating/pain persist I would go without the probiotics for a few days and see what happens. Sometimes too much probiotics can cause problems...or you might be sensitive to something with the brand you're taking.

It seems like you are taking the probiotics often and the bloating is persistent. Was it this bad before you started the probiotics you're currently taking?

I think you probably have still have an imbalance with the gut flora. Did the Dr. retest to see if you still have an overgrowth? Maybe he should try another antibiotic since the first one helped but you are obviously no longer benefiting from it.

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Rachel - the antibiotic is typically given to people with "travelers diaharea" or so says the rx bag.

No, the doctor didn't retest for bacterial overgrowth. When I called in in pain she just through more pills at it.

(I have since decided to find a new GI, but the first appointment is October 29th)

I have been taking this probitoic off and on since June. If I don't take it, I am less bloated, but I thought I 'needed it.'

I agree the processed food should go. It just by the time I come home I usually am so exhausted I don't have the energy to cook. But I am going to give a go.

Janet - I cannot wait for the day when I post about how AWESOME I FEEL! (I used to drink 5 cups of coffee a day, 2 cups was me "being good." 0 is going to be rough)

I mentioned yeast to my new doctor, she seems set on it possibly being giardia, which is the test I am waiting to hear back on.

I have a follow-up this Friday, so if its not giardia, I will push the yeast and/or retest for bacterial overgrowth.

Thank you.

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Melmak, I have bacterial dysbiosis, too. I took abx for 20 days, but as soon as I got off, it came back. So, I started on Oregano Oil, Uva Ursi, and Plant tannins (www.intensivenutrition.com). I also take Theralac (20 billion organisms), Ultra Flora (15 billion organisms) and VSL#3 (450 billion organisms).

It's a slow process to rebuild proper bacterial balance in the intestines, so this takes time.

I would also cut down on the carbs as many bacteria are fed by carbs (esp. sugar) much like yeast is. That would include breads, muffins, potato chips. Your brown rice is okay though since it's a whole grain.

I would also cut out the gluten replacement products until your gut feels better.

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.......SO THEY DID THE LOCKED JOURNALS .........WHICH I APPRECIATE.

I'M SO GLAD ROBBIN HAS UN LOCKED THE AUG 17TH ONE ...........

Isn't there more than a touch of irony in this apparent contradiction? :blink::unsure:

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Mom just called w/ what she thought was a happy thought, saying the look in my eyes lately reminds her of when I was 4 - full of excitement etc.

But it's more like being smacked in the head w/ a sledgehammer that's inscribed "what might have been".

Gluten was re-introduced when I was 5.

35-40 yrs of dull eyes.

Well not ALWAYS, but certainly as a baseline. Certain quantities of a variety of intoxicants would liven up the peepers I'm sure. Of course, I suspect that all that 'self-medication' would've been unnecessary if not for the gluten re-introduction.

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I have been taking this probitoic off and on since June. If I don't take it, I am less bloated, but I thought I 'needed it.'

If its the cause of your suffering you definately dont need it....or you might need less of it. You may need to try a different brand. Is it a high quality probiotic??

Its good that you're getting a new GI....have him retest you for the bacteria overgrowth since you are still symptomatic....I doubt he will be receptive to the yeast possibility. Mainstream isnt too enthusiastic about testing for yeast. They're pretty clueless when it comes to that.

Cant hurt to try though...sometimes they are willing.

Glad you are gonna try eliminating the processed stuff. I hope it helps. :)

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I read this post today on another board. Its having to do with diet, carbohydrates, candida, etc.

I really agreed with much of what was written....even though it goes against alot of what is preached about treating candida. I thought it was an excellent post overall.

http://z11.invisionfree.com/Health_411/ind...p?showtopic=528

These are the points which really ring true....in my opinion.

Because this is the case, my personal belief is that the low carb diet just suppresses much deeper problems that are going on in the body. And the diet does not take care of any of the root causes which allowed the problems to happen in the first place.

The underlying root cause was not the carbohydrates in the diet, even though they may have greatly aggrivated and promoted the candida and other pathogens. The underlying root cause is the toxic digestive tract that kills off good flora but is not toxic enough to kill off pathogens.

Unless the body becomes cleaner from colon cleansing and mercury detoxification, unless it then receives lots of good flora, gets lots of raw fresh fruits and vegetables, and becomes more alkaline, the body will remain in the same acid ph, the same deficit of nutrients, and the same mucked up, toxic state, often loaded with mercury or other heavy metals.

The low carbohydrate diet does not change this state; it just keeps the pathogens at bay by suppressing their growth. Once carbohydrates are added to the diet, even if it is years after the diet change, the pathogens are still around to take over once they have the opportunity.

And the later state is often worse than the former state (their health usually becomes worse than it was prior to going on a low carb diet).

This is my own response:

This is why I never see people cure themselves by doing *only* the diet and antifungal treatment. The toxic environment remains... and even though we *feel* better restricting our diet and keeping the bugs at bay....we are not truelly healed.

The yeast and the foods that feed it are NOT the actual cause for the problems which have developed. As long as we dont clear out the toxins and correct the terrain the bugs will continue to thrive. You will not be successful in starving them out if the body remains toxic from heavy metals and everything else that goes along with it.

Great post!! :)

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Tom, you just make this SO EASY!

I suppose this must mean I failed to convey the level of anger :angry: and sadness :( permeating my every cell today.

(REALLY not in the mood, Carla)

Sledgehammers don't land lightly.

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Rachel & Carla - I have been switching between SunFlora and Jarro probiotics.

I am really really hesitant to add anything new into the mix. I was taking some supplements (grapefruit seed, goldenseal) to try to ward off bad bacteria and ended up breaking out in horrible hives all over my torso.

Although the prospect of fitting into one pant size for an entire day seems quite appealing.

Do bacteria prefer a more alkaline or more acidic environment? If not eating carbs/sugar doesn't kill said bugs, what does? (if antibiotics only kill them for the duration you are on them?)

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Great post!! :)

Wow Rachel, I totally agree. An excellent, excellent read, and yet AGAIN another important clue in my personal health picture. It's so amazing to me how the answers to my questions keep landing right in front of me, like little puzzle pieces fitting right into place :lol:

This post on Carbs and Candida really resonated with me, big time. I had been doing all the things you and Donna and Andrea have been doing, the ART, the predecessor to ASYRA, NAET, homeopathic and nutritional support for all the pathways, organs, and body systems, cleanses at the appropriate times, chelation, and so on and so on, along with a low to no carb diet which was recommended and I felt like CRAP. I always knew deep down that this was not getting to the root, that there was just something more to it. I was convinced that my dysbiosis had not been taken care of, that it only came back, and with a vengeance, once I added back in carbs in my diet.

Now it all adds up, if the low to no carb diets are just driving the pathogens deeper into a supressed state, it's no wonder they took off like wild fire once I ingested starches and sugars again. One person I was seeing actually told me this was quite normal, that this was my body's natural and normal response to carbohydrates and that this was just my proof that our diet's shouldn't have any carbs in them. I completely disagreed with this and searched for other answers, I felt that a healthy body should be able to process all good sources of carbs in moderation (like whole grains, fruits, starchy vegetables, etc).

This information is actually very encouraging. After so many years of struggling with dysbiosis and thinking maybe there isn't a solution her post offers a lot of hope!!

Thinking back, the best I ever felt was when I was doing the Body Ecology Diet, which is all about healing the gut. The diet and its principles are largely centered around cultured food sources, kefir, cultered vegetables, coconut oil, etc. So this just might be a missing link in my plan, the cultured foods as well as a diet balanced with carbs.

Thanks for posting Rachel :D

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(REALLY not in the mood, Carla)

Sorry, Tom, usually a little humor cheers you up.

We've all missed out due to ignorant doctors over years and years. We can't change the past. We can only live in the moment. Worrying about the past or the future does not help. I can understand your anger over it. It ticks me off, too, to think that a month of abx when I was a kid would have prevented a lifetime of suffering. I understand. Be thankful you've figured it out now. Don't let the 35-40 years be longer due to suffering over anger.

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