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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator

***********WARNING***************

This post contains info. about alternative methods of treatment. If this is something that does not interest you or causes you distress in any way...please skip this post. This thread is meant to be supportive and helpful to others....if you disagree with a persons method of treatment please refrain from judgement or unsupportive posts. Everyone has the right to choose what type of treatment is best for them....and noone should be attacked because of it. Thanks. :)

So this is how my BioSET appt went last night...

I was scheduled to see Anna but instead she had to leave early and I ended up seeing Denise. Anna had left instructions with her on what she wanted me treated for....which was something to do with miasms.

I felt kind of bad for Denise cuz she had to take on all of the patients. She was pretty tired and was supposed to be done for the day. Donna, I guess she lives right by where that tanker destroyed the freeway ....so its a mess going home. Thank God I dont have to go anywhere near there....I cant even imagine. :blink:

I told her my Dr. only wants them to focus on my pathways....making sure they remain open and that I'm detoxing...thats it...nothing else. None of the "fancy" stuff. Denise said they've already done all my pathways so why just keep doing them?? She said she would call Anna and see what she wants her to do.

So she spoke with Anna and said that Anna feels that yeast and mold are huge issues as far as why I'm not excreting well....thats what she wanted to focus on with the treatment. She feels I'm not excreting candida die-off....getting highly reactive to it and just putting alot of stress on my liver.

However she said if Dr. S. wants the pathways checked...thats fine...we can go ahead and redo everything. So Denise came back with all the panels for the pathways.

I had her check some of my supplements first and everything came back fine. :)

So we started with the sulfur pathway...(yeah...this is the one that I always have problems with :( ).

So the first vial I touched was not good...Denise just sighed and said "Oh no." :(

I could tell she was frusterated...it wasnt that long ago that we went through this pathway.

So I had problems with maybe 5 or 6 vials. Then we went through methionine pathway and I had some problems there as well. Then she gave me the other panel for glutathione pathway and said "What the heck....lets just do them all." :rolleyes:

She said she didnt think I'd ever been treated for glutathione pathway....I'm pretty sure I havent since it didnt show up in my initial testing as being problematic. So I went through the whole set and didnt have a problem with any of it. :)

All she said was "Well...theres one good thing."

So I asked her what the heck is going on with my sulfur pathway....why does it keep getting "blocked"?? :unsure:

She answered "Girl...I dont know." :(

She said maybe since I cant eat anything I'm just eating the wrong foods or maybe its some other reason...she just doesnt know. She said my immune system just keeps getting sensitized to these things and its messing up the function of the pathway.

So I asked her if anyone else has this problems with their pathways just not staying open?? :unsure:

She said "Oh yeah."

For a second I felt alot better....but then she sighed and said that its mainly only the Autistic kids that have this problem. :(

So yeah...that kind of bummed me out. :(

Anyways...we treated the pathways again. I'm gonna be more diligent about yeast from now on because it seems that that might be a big part of why I'm not able to excrete metals very good and its definately why I get so reactive to everything.

Denise was kind of bummed that Dr. S. wouldnt do anything as far as challenging the mercury. She said "Why dont you just tell him you want to find out if your dumping any metals??"

I told her he's just not gonna do it....I'm too chemically sensitive and he says I'll react. She said even if I react I'll feel bad for a few days but at least I'll have the test out of the way. That was my thinking as well but I told her he said hes had people get set back for weeks cuz of it...so he wont chance it. He wants me to be excreting first...he wants me to be taking 3 drops of NDF daily with no noticeable reactions to it....and then he'll go ahead and do the test.

She said that yeah...DMPS is nothing "natural"....its a chemical...and its a strong one. She could see where he's coming from but she said she felt bad for me that we're not able to see whats going on...if metals are being excreted or what.

So thats about it. I think we will definately have to stay on top of my pathways now that its apparant I'm not staying clear after my treatments.

I also couldnt hold the treatment.....the bar was slipping. Poor Denise just seemed exhausted. :( Donna....this time I needed both rest and water and then I was able to hold everything.

We also got side tracked talking about bourgonvillia's for a few minutes. :lol: Anyone know what these are?? I have three of them in my yard and they scratch the heck out of my hands and arms when I have to cut them back. :angry:

Anyone recall me getting all cut up and bloody from doing yardwork last summer?? It was from those bourgonvillia...one of them is humungous!! :blink:

So yeah...Denise was all cut up...and thats what it was from. We were talking about that when Amy came to announce that the next patient was ready. Denise was like "Ooopps." :huh: we hadnt even started my treatment yet. :lol:

Those plants are HEINOUS...but the flowers are soooo pretty. Anyways mine all look dead right now! :huh:

I hope they're not dead and the flowers will come soon...Denise said that they will but hers is looking the same way right now...thats why she cut it all back. This is my project for this coming weekend.

Its suppossed to be super nice out....I think in the 80's. I like it hotter but I'm not complaining....I'm just totally over winter.....give me some sunshine!! :D

I had to reschedule with Anna for next Wednesday so I'll see what she says about all this. I havent seen her in at least 6 weeks...maybe more. I havent seen her since before my appt. with Dr. Amy....so its been awhile.


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CarlaB Enthusiast
OMG- my sister, dad and I went there for dinner when we were in AZ and all got sick with ear infections. My sis took us there to cheer us up (she's the money bags :P ). It was FANTASTIC! My dad has yet to stop talking about the purple Peruvian potatoes!

There was a table for 18 set up at the owner's house overlooking the valley. They had those gas heaters to keep it warm ... you know, the desert gets cold at night. I didn't want to make a fuss because this is one of Adam's customers, so I thought I'd just do the best I could for food that night. I didn't know they'd have the chef from the restaurant up there! Duh! I just pulled a waiter aside in the beginning and told him ONCE I was gluten intolerant, and the whole meal was adjusted for me ... every course. It was very impressive.

The food was GREAT!

It would definately be fun.

CarlaB Enthusiast
***********WARNING***************

This post contains info. about alternative methods of treatment. If this is something that does not interest you or causes you distress in any way...please skip this post. This thread is meant to be supportive and helpful to others....if you disagree with a persons method of treatment please refrain from judgement or unsupportive posts. Everyone has the right to choose what type of treatment is best for them....and noone should be attacked because of it. Thanks. :)

:unsure::unsure::unsure: Did I miss something?

CarlaB Enthusiast
We also got side tracked talking about bourgonvillia's for a few minutes. :lol: Anyone know what these are?? I have three of them in my yard and they scratch the heck out of my hands and arms when I have to cut them back. :angry:

Anyone recall me getting all cut up and bloody from doing yardwork last summer?? It was from those bourgonvillia...one of them is humungous!! :blink:

Yeah, I had a huge one when we lived in Florida ... they're beautiful!!! They won't grow here.

happygirl Collaborator

Bev, I just wanted to offer my support to you. I'm happy that you seem to be in good hands. Please keep us updated on your app't tomorrow. They probably won't run the Igenex bloodwork tomorrow, bc it has to be fresh and sent out either M, T, or W.

Crohn's/refractory/other GI issues are scary....but, either way, it is good to know. And, if you don't have it, then you'll KNOW you don't! (I don't have Crohn's or lymphoma, and although it was kind of scary to be tested, its still nice to for me to know). Between your GI and your LLMD....I think you'll get this figured out.

By the way....I ate at Austin Grill (the one over by us)....AGAIN....and didn't get sick!

CarlaB Enthusiast
By the way....I ate at Austin Grill (the one over by us)....AGAIN....and didn't get sick!

It's funny how low our expectations get ... not "I had a fantastic meal!" ... rather "I didn't get sick!" :lol::lol:

Glad you got to go out. :)

dlp252 Apprentice
I felt kind of bad for Denise cuz she had to take on all of the patients. She was pretty tired and was supposed to be done for the day. Donna, I guess she lives right by where that tanker destroyed the freeway ....so its a mess going home. Thank God I dont have to go anywhere near there....I cant even imagine.

:o Wow, poor Denise...I'm glad I don't have to ever go up that way!

I also couldnt hold the treatment.....the bar was slipping. Poor Denise just seemed exhausted. :( Donna....this time I needed both rest and water and then I was able to hold everything.

I can't figure it out in my case...well, rest I can because I never sleep, but I drink tons of water, so I don't get it. And you, you sleep, lol, but probably probably don't drink enough water. So what does this mean...it shows up every week for me. It must not be as simple as just getting enough sleep or drinking enough water...it has to be something more than that.

Anyone recall me getting all cut up and bloody from doing yardwork last summer?? It was from those bourgonvillia...one of them is humungous!!

Ah yes I remember, the bouganvillia from hades, lol. :lol:

Its suppossed to be super nice out....I think in the 80's. I like it hotter but I'm not complaining....I'm just totally over winter.....give me some sunshine!!

Sheesh, you couldn't tell it from tonight...it's cold already and it's only 6:30, lol. I was just laying on the couch with my blankie! :lol:


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Rachel--24 Collaborator
It's funny how low our expectations get ... not "I had a fantastic meal!" ... rather "I didn't get sick!" :lol::lol:

:lol::lol:

Totally true. Any meal is fantastic as long as I dont get sick...doesnt matter if its just the plainest meal you would never want to eat under normal circumstances. :P

Today I go to work and my boss is there drinking a Starbucks Caramel Frappacino....then later my boss and co-worker/friend are sitting in the office and my friend is eating gummi bears!!!

I was like WTH??? :blink:

I had to tell them about my list of 1000 things I could totally eat...if I could actually eat stuff. :P

Both of those things were on my list. My friend said next time thye're gonna bring a bunch of Big Macs back...now that they know its #1 on my list! :rolleyes:

She thought it was cute we were listing 1000 foods we could eat. :lol:

Some people feel bad if they eat stuff in front of me...I never even think about it...cuz it doesnt bother me even the tiniest bit. But sometimes I walk in the room and people will hide their food under the table and pretend they're just sitting there...not eating anything. :lol::lol:

It cracks me up...but its nice that people are that thoughtful or concerned about my feelings. :)

AndreaB Contributor
I felt kind of bad for Denise cuz she had to take on all of the patients. She was pretty tired and was supposed to be done for the day. Donna, I guess she lives right by where that tanker destroyed the freeway ....so its a mess going home. Thank God I dont have to go anywhere near there....I cant even imagine. :blink:

So we started with the sulfur pathway...(yeah...this is the one that I always have problems with :( ).

So the first vial I touched was not good...Denise just sighed and said "Oh no." :(

I could tell she was frusterated...it wasnt that long ago that we went through this pathway.

Poor Denise. Her communte is going to be pretty bad for awhile from what I've heard.

Good thing they did what your doctor wanted since your pathways were blocked again. Somehow I think it would be a very bad thing if you did a challenge and your sulfur pathway was blocked. :unsure:

So I asked her what the heck is going on with my sulfur pathway....why does it keep getting "blocked"?? :unsure:

She answered "Girl...I dont know." :(

She said maybe since I cant eat anything I'm just eating the wrong foods or maybe its some other reason...she just doesnt know. She said my immune system just keeps getting sensitized to these things and its messing up the function of the pathway.

So I asked her if anyone else has this problems with their pathways just not staying open?? :unsure:

She said "Oh yeah."

For a second I felt alot better....but then she sighed and said that its mainly only the Autistic kids that have this problem. :(

Didn't you say you'd be autistic if you were a young child?

I'm glad they are going to keep up on checking the pathways though.

I just pulled a waiter aside in the beginning and told him ONCE I was gluten intolerant, and the whole meal was adjusted for me ... every course. It was very impressive.

The food was GREAT!

That's great Carla! You don't hear too many stories like that. :)

CarlaB Enthusiast
That's great Carla! You don't hear too many stories like that. :)

Yes, and it happened every night for three nights! I guess that's what we'd get if we ate at nice places more often. :P

Okay, Grey's Anatomy is weird tonight ... are they spinning off Addison's new show tonight????

Rachel--24 Collaborator
I can't figure it out in my case...well, rest I can because I never sleep, but I drink tons of water, so I don't get it. And you, you sleep, lol, but probably probably don't drink enough water.

I actually never get enough rest...except maybe sometimes on the weekend. I average about 5 hours of sleep a night...which isnt too good for someone whos sick. :ph34r:

Mtndog Collaborator
Bev, I just wanted to offer my support to you. I'm happy that you seem to be in good hands. Please keep us updated on your app't tomorrow. They probably won't run the Igenex bloodwork tomorrow, bc it has to be fresh and sent out either M, T, or W.

Crohn's/refractory/other GI issues are scary....but, either way, it is good to know. And, if you don't have it, then you'll KNOW you don't! (I don't have Crohn's or lymphoma, and although it was kind of scary to be tested, its still nice to for me to know). Between your GI and your LLMD....I think you'll get this figured out.

By the way....I ate at Austin Grill (the one over by us)....AGAIN....and didn't get sick!

Thanks sweetie- Carla I'm with you and Rachel......any meal I don't react to is DELICIOUS!!!!!!!!!!!

AndreaB Contributor
By the way....I ate at Austin Grill (the one over by us)....AGAIN....and didn't get sick!

Yay for a good meal out!! :)

Today I go to work and my boss is there drinking a Starbucks Caramel Frappacino....then later my boss and co-worker/friend are sitting in the office and my friend is eating gummi bears!!!

Both of those things were on my list. My friend said next time thye're gonna bring a bunch of Big Macs back...now that they know its #1 on my list! :rolleyes:

:lol::lol:

That is nice of people to consider your feelings. :)

Donna,

Your new pic is cute. :)

dlp252 Apprentice
Okay, Grey's Anatomy is weird tonight ... are they spinning off Addison's new show tonight????

Yes, I think it's tonight. I've got my recorder set, but I'm going to try to watch the first hour.

I actually never get enough rest...except maybe sometimes on the weekend. I average about 5 hours of sleep a night...which isnt too good for someone whos sick. :ph34r:

Oh, for some reason I thought you slept a lot, lol. I should know better because you're always up posting late, and I know you have to be at work even earlier than I do. :lol: I only get about 5 hours too, sometimes 6 if it's a good night. :(

dlp252 Apprentice
Your new pic is cute. :)

See, even as a child I loved music....although I'm suspecting that NO ONE ELSE loved MY music. :lol:

CarlaB Enthusiast
Oh, for some reason I thought you slept a lot, lol. I should know better because you're always up posting late, and I know you have to be at work even earlier than I do. :lol: I only get about 5 hours too, sometimes 6 if it's a good night. :(

I must be the exception ... I go to bed around 11, my daughter wakes me up at 8:45 so I can watch her at her bus stop since she's the last one to leave in the morning. I watch her from the bedroom window and go lay down until about 10, when I go eat, then I lay down again, then I go work out about 11.

Of course, much of that resting time laying down is spent on here!!

I get LOTS of rest. Some days my body needs more than others. Some days I can get up earlier.

dlp252 Apprentice
I must be the exception ... I go to bed around 11, my daughter wakes me up at 8:45 so I can watch her at her bus stop since she's the last one to leave in the morning. I watch her from the bedroom window and go lay down until about 10, when I go eat, then I lay down again, then I go work out about 11.

Of course, much of that resting time laying down is spent on here!!

I get LOTS of rest. Some days my body needs more than others. Some days I can get up earlier.

I dream of that life. :lol: I got to bed at 9:00, wake up at 1:00, 2:00, 3:00 and usually stay awake at that point (not by choice) because I have to get up at 4:15 for work. I can rarely take a nap...it happens ocassionally, but not often. I think if I didn't have to work early I could probably fall back asleep at least for a little while. :(

Rachel--24 Collaborator
Good thing they did what your doctor wanted since your pathways were blocked again. Somehow I think it would be a very bad thing if you did a challenge and your sulfur pathway was blocked. :unsure:

Exactly...and this is my biggest worry as far as chelation. :unsure:

I can always tell when somethings up with the sulfur....I get certain symptoms from sulfur foods. I was complaining about sulfur again yesterday when I first got there.

I was really glad to have the pathways rechecked. YAY for my Dr. :D

Obviously he's concerned about me having blocked pathways. He'll probably want to be 100% sure that everything is open and working properly before he wants to give me anything synthetic and sulfur-based.

I guess if I'm taking 3 drops of NDF and not getting any bad symptoms that will be a good indicator that things are moving out. He seems to think that 3 drops is alot.

I still wanna go back to the sauna occasionally...he told me that he had patients who were doing them daily...and over time they just got worse and worse. So I'm just gonna do it maybe twice a month to start....also I'll do some Epson Salt baths. :)

Rachel--24 Collaborator
See, even as a child I loved music....although I'm suspecting that NO ONE ELSE loved MY music. :lol:

Donna...that picture is sooo cute. :)

Rachel--24 Collaborator
Didn't you say you'd be autistic if you were a young child?

Yeah...thats what they said. That if all this happened when I was one....instead of 31...I would definately be at high risk. Denise seems to think so too...basically its all the same type of issues. My problems are very similar to what they see with the Autistic kids.

CarlaB Enthusiast
I dream of that life. :lol: I got to bed at 9:00, wake up at 1:00, 2:00, 3:00 and usually stay awake at that point (not by choice) because I have to get up at 4:15 for work. I can rarely take a nap...it happens ocassionally, but not often. I think if I didn't have to work early I could probably fall back asleep at least for a little while. :(

Some nights I'll sleep that 8 or 9 hours, others I'm resting, but have insomnia. I do NEED to rest that much, I just have no strength at all in the morning.

Ummm, talking elevator on Grey's??? Okay, I'm just trying to bug you west coasters. :P

AndreaB Contributor
I still wanna go back to the sauna occasionally...he told me that he had patients who were doing them daily...and over time they just got worse and worse. So I'm just gonna do it maybe twice a month to start....also I'll do some Epson Salt baths. :)

Why would the sauna make things worse? That's intersting. Of course, if they aren't detoxing I could see that, but... :blink:

dlp252 Apprentice
Donna...that picture is sooo cute. :)

Thanks! :)

Some nights I'll sleep that 8 or 9 hours, others I'm resting, but have insomnia. I do NEED to rest that much, I just have no strength at all in the morning.

Ummm, talking elevator on Grey's??? Okay, I'm just trying to bug you west coasters. :P

Sad thing is that I NEED it too...I am so exhausted all the time, but I just can't get the rest. I've actually been thinking that if I have to do chelation or go on treatment for lyme I might see if I can go out on disability for a few weeks just so I can rest. I feel like I can't get caught up. My work hours don't help--I have to be at work by 6:00 or 6:30.

Teaser...Grey's doesn't come on for another hour (someone said it comes on at 8:00 tonight, but I'm not sure...if not then it's TWO hours, lol) here!

Rachel--24 Collaborator
I must be the exception ... I go to bed around 11, my daughter wakes me up at 8:45 so I can watch her at her bus stop since she's the last one to leave in the morning. I watch her from the bedroom window and go lay down until about 10, when I go eat, then I lay down again, then I go work out about 11.

Of course, much of that resting time laying down is spent on here!!

I get LOTS of rest. Some days my body needs more than others. Some days I can get up earlier.

Carla...I had that kind of life when I was on disabiltiy for 2 years. I spent most of it laying in bed, watching TV...just vegetating and crying alot....but I had some decent days where I'd go out and do stuff too. I mostly rested though.

The last 4 months of disability I was up bright and early and staying up past 1 am. I was like the energizer bunny and I rarely saw my room...I only was in there for the few hours I slept. That was when I first went on the candida diet and miracles started to happen. I was busy doing all kinds of stuff....including building my scrapbooking area. :)

Something did set me back though because at some point I started to get worse. After my last Dr. appt. I kinda started realizing maybe it was too much sauna?? :huh:

I was going EVERY day....sometimes even twice. At first I felt great but after awhile I started getting worse and the saunas didnt feel as good anymore. I thought maybe it was the smell of the chlorine from the pool at the gym or something else messing me up. :unsure:

Now I'm thinking maybe the saunas is why I got worse. :(

dlp252 Apprentice
Why would the sauna make things worse? That's intersting. Of course, if they aren't detoxing I could see that, but...

I think a person can detox too fast and too much...it can make you very sick, and it's worse if you aren't detoxing properly because pathways are blocked, etc.

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      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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