http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Sjogren-s-Disease/44/
This is something often discussed on the Fibro, Psoriatic Arthritis and Lupus sites, gluten intolerance, yeast overgrowth, but I have never read of the confirmed medical link between these before.
Which test have you already had done? I guess they start with blood tests, then go into biopsy.
I don't like the idea of biopsies. Just don't!
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#diagnosis
I've never had a biopsy done to confirm celiac. I am due for another colonoscopy next year and I wonder if the doctor could order the biopsy at that time. They usually do one anyway. I had stomach polyps removed and a tubular adenoma removed from colon last time. Can't see why they couldn't kill two birds with one stone. Let's see, what else can they check while they're down there?? ha ha I'm serious.
Tez, SK...which tests were done on you?
Allergic
Allergic, hey girlfriend, glad you joined! One more place besides Fibro and Lyme where we can talk! BTW, I am not celiac sensitive, went off gluten a year, no difference, do not have Lyme but live in rural area and have removed ticks for both grandsons, so need to be up on it!
I tend to get around! HA! Only on Ben's Friends though!
I've been gluten free for three years at least so testing would not show up anything. That's why I think the first test was positive. I hadn't gone off gluten yet. The negative ones were when I was gluten free. Duh, no one told me to eat gluten before testing.
You do get around SK! Don't worry I haven't heard any rumours about you "getting around." ha ha
SK said:
Allergic, hey girlfriend, glad you joined! One more place besides Fibro and Lyme where we can talk! BTW, I am not celiac sensitive, went off gluten a year, no difference, do not have Lyme but live in rural area and have removed ticks for both grandsons, so need to be up on it!
I tend to get around! HA! Only on Ben's Friends though!
Well, good then I will ask to get biopsy for celiac (coeliac) too. :') You're probably pronouncing it properly, no doubt. Americans can sometimes slaughter a perfectly good word. lol I still have my strong accent from philadelphia. You can't hear it when I type. lol
I think some people just make polyps, runs in families seems like. I had some in stomach, very small, and then when I had d&c they found couple there and removed them. Having said that, I never had any until I was prescribed Nexium for gastric reflux. Nexium can cause stomach polyps. Sure enough I got them after that. I have von willebrands so I have to get infused each time I have any invasive procedure, with ddavp to make my blood clot like a normal person and take pills afterwards for a week. It's genetic, not much you can do about that one.
It's so helpful to be on BF's sites, I learn something new all the time.
I am currently under treatment for systemic yeast, leaky gut syndrome. This is a very serious and much underdiagnosed condition. I posted alot of info on the fibro community. I hope I can get it straightened out this time, once and for all. Some doctors believe this is one of the conditions that cause fibro. We'll see how it goes with my fibro symptoms. :')
Tez_20 said:
Allergic,
How you say celiac in the states, it's pronounced coeliac in the uk...this is how it's pronounced by we (see-liac, spelt celiac disease in other countries) lol
I had a biopsy done the same time as a colonoscopy...when the Gastro specialist checked my intestines, he said if you don't mind i'm also going to do a biopsy also to make sure, as he'd done a blood test previous that came back negative.
Well i can't see why your doctor can do both at the same time like mine did plus it's killing one bird with 2 stones, you've got them both out the way.
Those polyps are a nuisance i had one removed last year from just inside the uterus lining while they was operating and did a "Novasure ablation" to stop my monthly's completely.
Oh bless you Allergic...when you say i'm being serious, sometimes only so many can be done at one time because of infections setting in but there's no harm in asking about a biopsy when you have the colonoscopy.
Allergic over the years i've had no end of Upper GI endoscopy's besides colonoscopy's and also Gastroscopy besides Barium enema which i only had early this year besides but the list can go on with other tests over 26yrs.
Love Terri xxx
Terri,
You will love allergic, she contributes such good info, has a nursing degree, and a very sardonic sense of humor, just like we do! You two should get along like salt and pepper! Can't say bread and butter, because she doesn't eat bread, and is soon to ditch butter! HA! She should have the body of Miss America any day if not already! Gonna be weeds and seeds, is it, Allergic? UM!! That will make a great holiday spread! LOL!! Hey, gotta do what you gotta do!! Just thought of that old song 'Whatever gets you through the night, is alright, alright'. Kind of thinking it was Dave Mason?
Hugs to you both,
SK
That was John Lennon who did that song SK. I know which one you mean. lol Whatever is right!
Tez_20 said:
Hello Susan,
I've seen Allergic's name on Fibro when i've been on and as you know when you've got someone throwing info into a site it makes it all the better....oh well i'll get on with Allergic if her sense of humour is like yours.lol
Well i have warbatons diet bread it's only small and we use flora light...how allergic's doing the lot, no way for me i hardly substane enough now as it is.
I can't think of that song you've mentioned mate.lol
Hows your health anyway?
Hugs & kisses Terri xxx
SK said:Terri,
You will love allergic, she contributes such good info, has a nursing degree, and a very sardonic sense of humor, just like we do! You two should get along like salt and pepper! Can't say bread and butter, because she doesn't eat bread, and is soon to ditch butter! HA! She should have the body of Miss America any day if not already! Gonna be weeds and seeds, is it, Allergic? UM!! That will make a great holiday spread! LOL!! Hey, gotta do what you gotta do!! Just thought of that old song 'Whatever gets you through the night, is alright, alright'. Kind of thinking it was Dave Mason?
Hugs to you both,
SK
Terri,
Those are excellent links on leaky gut. I'm on Nystatin(oral) and a biofilm busting digestive enzyme between meals (so it breaks down the biofilm that protect the yeast)not the food.
This biofilm can form on any organism, including the Lyme organism, so you can see how it can become so difficult to treat these infections, especially if they have been going on for a long time.
http://scdlifestyle.com/2010/03/the-scd-diet-and-leaky-gut-syndrome/
BTW, I can have "whole grains" but no simple carbs. I'm doing brown rice and quinoa. I found a trick to eating beans without getting bloated and gassy. Kombu seaweed. Eden Organic brand uses Kombu when they cook their beans, also they do not use toxic liners in their cans. You can buy Kombu seaweed and put it in when you cook your own beans too. I'll be doing that later. Right now I just buy the Eden brand ones. Easier. Not sure if you needed to know that, but I'm just so excited to be able to eat beans and have zero gas, zero bloating. It's the simple things in life that make me the happiest! lol
Tez_20 said:
Hello Allergic,
Yes you definitely need a biopsydoing to sort out your issues and your leaky gut syndrome is actually IBS what i've got but it sounds like you've got it bad like me...i've had mine for 15yrs just over and it's only been diagnosed this year, it does give me some terrible stick.
You might find this links interesting..the first is about it being IBS and the second ones about it plus how it swells we inside...i'm on spasm tablets 3 times daily besides Lactulose.
http://www.triaintegrativewellness.com/leaky-gut-a-potentially-dang...
http://www.glutenfreesociety.org/gluten-free-society-blog/leaky-gut...
At the moment i'm tried to eat the best i can but certain foods i've cut out because it kicks it off and irritates it bad with pain.
Well as you can see by my profile i've got loads going on and if this leads to fibro...then that's another issue which could occur.
Love Terri xxx
Are you sure you don't have systemic yeast?? It's very hard to diagnose and pick up on testing, got to go by symptoms usually.
I'm doing great with the more vegan diet. Big difference in my digestion, much better. I feel light and I have lost the water retention and bloating in my belly. I fit into jeans that I thought I would have to throw away. My hips and belly trimmed right out. Five pounds off. Back to normal, even better.
So far I eat beans (as long as they are cooked with kombu seaweed, brown rice, quinoa, walnuts, sunflower seeds, sesame seeds, almonds, kale, collards, spinach, cabbage, celery, brown rice pasta, organic raw apple cider vinegar, olive oil, coconut oil. I'll add more in as I go along. Doctor didn't give me the ok yet to get rid of all meat, so a little bit of chicken or sardine but I can't wait to get rid of them too. I take flax seed oil. Everything organic. B vitamins, digestive enzymes(Interfase Plus) and probiotics and prebiotics, those that the doctor recommended. Magnesium, and he has me taking zinc picolinate, and b-6. It's such a relief to not feel all bloated and constipated.
I usually drink water but have some peppermint tea or pao d'arco tea, organic which is good for getting rid of yeast too. So no gluten, sugar, caffiene, alcohol, corn, or dairy and soon to be no meat or meat derivitives.
I used to have low blood sugar but diet changed that. There are some supplements that I took too that leveled it out, but really the diet does that. I never have a problem anymore and I eat as much as I want of the above foods. Plenty of protein in all of it.
Tez_20 said:
Hello Allergic,
You seem to be going through hell with this and i hope to god it does'nt lead to coeliac because that's even more extensive with issues.
I looked at that first link and even i did'nt know about the biofilm's but i do know i suffer bloating bad i've never had a child but me my stomach swells you'd think i look 4mths easily, i get heart burn bad, constipation more than anything but since eatting better foods that on track more, foggyness and lack of concentration which susan can vouche for on that one it drives me made plus my joints hurt bad besides.
I used to lose discharge through my navel with a slight smell and the last time i had it, the doctor gave me cream to insert inside and told me i had an infection in my stoamach and the only way of release was through the navel...regarding apple cider vinegar i used to drink a cap of that neat morning and night, until ste my hubby blocked me last year but come tomorrow i'm starting it again after reading that link.
With my mouth i'm up the dentist every 3mths getting it checked and my teeth polished as i'm funny in that respect anyway been going since i was 5yrs old.
Well how your eatting those combination's of food, this is what i have daily.
Morning - Special K
Dinner time - Prune yougurt with either a banana or 2 riveta yogurt biscuits or ham sandwich.
Tea time - Salad with chicken or chicken korma or fish
Then an hour later at 7pm - 5 or 7 turkish slices for my low sugar as i have to have something as the doctors have told me.
Taking my spasms tablets though besides the lactulose and eatting what i've mentioned my bowels are alot better, at last.
Terri, Here is a link that talks about prebiotics and probiotics in relation to celiac disease.
http://glutenfreeworks.com/blog/2010/06/28/understanding-probiotics-and-prebiotics-in-celiac-disease/
Tez_20 said:
Allergic,
How you say celiac in the states, it's pronounced coeliac in the uk...this is how it's pronounced by we (see-liac, spelt celiac disease in other countries) lol
I had a biopsy done the same time as a colonoscopy...when the Gastro specialist checked my intestines, he said if you don't mind i'm also going to do a biopsy also to make sure, as he'd done a blood test previous that came back negative.
Well i can't see why your doctor can do both at the same time like mine did plus it's killing one bird with 2 stones, you've got them both out the way.
Those polyps are a nuisance i had one removed last year from just inside the uterus lining while they was operating and did a "Novasure ablation" to stop my monthly's completely.
Oh bless you Allergic...when you say i'm being serious, sometimes only so many can be done at one time because of infections setting in but there's no harm in asking about a biopsy when you have the colonoscopy.
Allergic over the years i've had no end of Upper GI endoscopy's besides colonoscopy's and also Gastroscopy besides Barium enema which i only had early this year besides but the list can go on with other tests over 26yrs.
Love Terri xxx
Hi Terri,
You mentioned anemia but didn't say which kind. Is your folate low? Do you have macrocytic anemia? That is something that was going on with me. Have they checked your homocysteine levels? Has doctor done nutrient testing on you?
Also, I tend to have low stomach acid which is quite common as we get older. It gives you the same symptoms as high stomach acid and is frequently confused and treated with the wrong meds, therefore making the problem worse. If ACV makes your stomach feel better, you probably have low stomach acid. I use either ACV with my meals or HCL. Low stomach acid can lead to b-12 deficiency, folate deficiency and a host of others. It's just plain malabsorption that's happening. Celiac and gluten intolerance can cause malabsorption too.
http://en.wikipedia.org/wiki/Folate_deficiency
Hugs,
Allergic
Tez_20 said:
Hello Allergic,
When they've run tests and even checked my bowels they was clear just had abit of swelling on the main intestine with the last test but otherwise never had no tests for systemic yeast.
Well i'm pleased you Veg diet is better but with me i have to have chocolate every day as i've got Diabetes 1 it's always low plus my folic level is besides being an anaemic so i need certain things to keep me going and how you've lost weight i can't afford to lose none as i'm 5ft 8" tall and weigh 9st and they've always got me on the scales either at the doc's or hospital keeping a check as i've dropped as low as 7& half st.
It's just the middle of my midrift/waste as we call it, where it's down one minute and the next blowed up but my main stomach is flat...i look weird in a mirror when it blows out.
The nuts and seeds you eat i can't because the sjogrens won't allow the swallowing but i do eat plenty of greens and have a banana every other day, i can't eat fruit daily as it send my potassium rate through the roof and my kidneys get infected quickly with it.
Certain oils make me feel really bad and lastnight ste cooked spaghetti bolognese...it gave me heart burn really bad because of the tomatoes i can't eat them normally as my IBS kicks off in bad pain....i have cups of normal tea can't stand wat your drinking as ste's tried me and i've had to start where water is concerned as the sjogren's drys my organs out more now and when i get a flare they expand and put me in some pain.
I don't seem to bad with how i'm eating now...as i never used to eat all day till my evening meal, i had anorexia years ago and since then my appetite is low, as long as i can keep drinking a cuppa every 10mins i keep going.
Allergic said:Are you sure you don't have systemic yeast?? It's very hard to diagnose and pick up on testing, got to go by symptoms usually.
I'm doing great with the more vegan diet. Big difference in my digestion, much better. I feel light and I have lost the water retention and bloating in my belly. I fit into jeans that I thought I would have to throw away. My hips and belly trimmed right out. Five pounds off. Back to normal, even better.
So far I eat beans (as long as they are cooked with kombu seaweed, brown rice, quinoa, walnuts, sunflower seeds, sesame seeds, almonds, kale, collards, spinach, cabbage, celery, brown rice pasta, organic raw apple cider vinegar, olive oil, coconut oil. I'll add more in as I go along. Doctor didn't give me the ok yet to get rid of all meat, so a little bit of chicken or sardine but I can't wait to get rid of them too. I take flax seed oil. Everything organic. B vitamins, digestive enzymes(Interfase Plus) and probiotics and prebiotics, those that the doctor recommended. Magnesium, and he has me taking zinc picolinate, and b-6. It's such a relief to not feel all bloated and constipated.
I usually drink water but have some peppermint tea or pao d'arco tea, organic which is good for getting rid of yeast too. So no gluten, sugar, caffiene, alcohol, corn, or dairy and soon to be no meat or meat derivitives.
I used to have low blood sugar but diet changed that. There are some supplements that I took too that leveled it out, but really the diet does that. I never have a problem anymore and I eat as much as I want of the above foods. Plenty of protein in all of it.
Tez_20 said:Hello Allergic,
You seem to be going through hell with this and i hope to god it does'nt lead to coeliac because that's even more extensive with issues.
I looked at that first link and even i did'nt know about the biofilm's but i do know i suffer bloating bad i've never had a child but me my stomach swells you'd think i look 4mths easily, i get heart burn bad, constipation more than anything but since eatting better foods that on track more, foggyness and lack of concentration which susan can vouche for on that one it drives me made plus my joints hurt bad besides.
I used to lose discharge through my navel with a slight smell and the last time i had it, the doctor gave me cream to insert inside and told me i had an infection in my stoamach and the only way of release was through the navel...regarding apple cider vinegar i used to drink a cap of that neat morning and night, until ste my hubby blocked me last year but come tomorrow i'm starting it again after reading that link.
With my mouth i'm up the dentist every 3mths getting it checked and my teeth polished as i'm funny in that respect anyway been going since i was 5yrs old.
Well how your eatting those combination's of food, this is what i have daily.
Morning - Special K
Dinner time - Prune yougurt with either a banana or 2 riveta yogurt biscuits or ham sandwich.
Tea time - Salad with chicken or chicken korma or fish
Then an hour later at 7pm - 5 or 7 turkish slices for my low sugar as i have to have something as the doctors have told me.
Taking my spasms tablets though besides the lactulose and eatting what i've mentioned my bowels are alot better, at last.
You are right, it was Lennon, don't know why I thought it was Dave Mason! DUH! I happened on Bad Company the other day on Youtube and have been listening to all of that good music from my youth! Paul Rodgers, aka 'the voice', I didn't even recognize him or his voice when I saw him on a special performing with Queen, so I am 'slipping' for sure!
I have been suffering, between the rain, and the trip with hubs to have colonoscopy, the ride and the excessive walking have me in agony! Joints that never before bothered me are swollen, sore and thumping! Now have Sciatic in BOTH legs, so discs are moving again! On top of that had the grandson here with the flu for 4 days! Always something!
It all blurs together sometimes. I can't remember things anymore. It drives me crazy. I go on youtube too to listen to old music. I dwell on fond memories. It's like therapy for me, so is going to thrift shops. I think it takes me out of the moment and my goofed up non-life and back to when I used to have fun.
You sound like you got really beat to a pulp with too much going on. Sciatica is so painful, I used to get it in my one leg when I had that sit down job. Time for you to visit the chiropractor, huh? It's times like that when you really need the evil rx's. What else can you do?
I'm struggling with insurance companies this week about ambulance bill and another bill. I'm praying that my appeal doesn't get denied. They better take installments, small ones. Another headache producer. It will finally go down to the 80's here next week. I've had a/c off cause I've been short on money from paying for meds and supplements. Poor Esther, she threw up today. I think she senses my stress, and the heat doesn't help. Well, that's my vent today, but I sure hope you get the sciatica under control.
You're in my prayer,
Allergic
Hi Terri,
Thank you for replying and giving me that link to review. I asked about macrocytic because my RBC's are large and zinc low, b vit's low, b-2 very low, and folic acid very low, b-12 low. My previous doctor put me on folate 5-mthf for about four months, no change, rbc's still large. The b-12 injections caused hematomas(due to bleeding disorder) Now I'm getting vit's through my skin, topical cream, and oral. Now I've been on zinc picolinate 30mg 2x/day and b-6 100mg 2x/day.
I am feeling strange, like I have pms 24/7 and very aggressive. I wonder if the zinc shot my testosterone up or something. I can't figure it out. I just know that there is more going on there with the rbc's. He said I have Pyroluria http://drkaslow.com/html/pyroluria.html
He drew blood to test for overload of fibrinogen too. That's probably not anything but he's checking it anyway.
http://blog.energeticnutrition.com/2010/03/fibrin-and-fibromyalgia-pain/
How can one person be so complicated. You must have asked yourself that question a million times. Hope you're having a good day today,
Hugs,
Allergic
Tez_20 said:
Hello Allergic,
Sorry i'm late in replying.
I've got megolablastic anaemia...i had it when i was 32 and the level was 8.0 the lowest you can go, i could'nt move or do anything except sleep and i got that bad i topped myself and ended up in hospital for a week and after that i was always on boarder line and then when i was diagnosed with Lupus 6mths down the line the bloods showed positive with it again at 8.0 but with my b12 jab every 3mths it keeps it up to 13.
http://en.wikipedia.org/wiki/Megaloblastic_anemia
Yes i'm also low in folate levels also and take a 5mg tablet every morning.
Regarding homocysteine levels and nutrient testing...i've never been told with doctor's but when i have bloods took the women always tell me what it's for and those have never been mentioned.
Yes i know it's low acid in the stomach and been told that the lupus absorbs the b12 in our stomach's which is stored mainly there...that's why so many patients get anaemia besides IBS & Coeliac Disease.
Allergic said:Hi Terri,
You mentioned anemia but didn't say which kind. Is your folate low? Do you have macrocytic anemia? That is something that was going on with me. Have they checked your homocysteine levels? Has doctor done nutrient testing on you?
Also, I tend to have low stomach acid which is quite common as we get older. It gives you the same symptoms as high stomach acid and is frequently confused and treated with the wrong meds, therefore making the problem worse. If ACV makes your stomach feel better, you probably have low stomach acid. I use either ACV with my meals or HCL. Low stomach acid can lead to b-12 deficiency, folate deficiency and a host of others. It's just plain malabsorption that's happening. Celiac and gluten intolerance can cause malabsorption too.
http://en.wikipedia.org/wiki/Folate_deficiency
Hugs,
Allergic
Tez_20 said:Hello Allergic,
When they've run tests and even checked my bowels they was clear just had abit of swelling on the main intestine with the last test but otherwise never had no tests for systemic yeast.
Well i'm pleased you Veg diet is better but with me i have to have chocolate every day as i've got Diabetes 1 it's always low plus my folic level is besides being an anaemic so i need certain things to keep me going and how you've lost weight i can't afford to lose none as i'm 5ft 8" tall and weigh 9st and they've always got me on the scales either at the doc's or hospital keeping a check as i've dropped as low as 7& half st.
It's just the middle of my midrift/waste as we call it, where it's down one minute and the next blowed up but my main stomach is flat...i look weird in a mirror when it blows out.
The nuts and seeds you eat i can't because the sjogrens won't allow the swallowing but i do eat plenty of greens and have a banana every other day, i can't eat fruit daily as it send my potassium rate through the roof and my kidneys get infected quickly with it.
Certain oils make me feel really bad and lastnight ste cooked spaghetti bolognese...it gave me heart burn really bad because of the tomatoes i can't eat them normally as my IBS kicks off in bad pain....i have cups of normal tea can't stand wat your drinking as ste's tried me and i've had to start where water is concerned as the sjogren's drys my organs out more now and when i get a flare they expand and put me in some pain.
I don't seem to bad with how i'm eating now...as i never used to eat all day till my evening meal, i had anorexia years ago and since then my appetite is low, as long as i can keep drinking a cuppa every 10mins i keep going.
Allergic said:Are you sure you don't have systemic yeast?? It's very hard to diagnose and pick up on testing, got to go by symptoms usually.
I'm doing great with the more vegan diet. Big difference in my digestion, much better. I feel light and I have lost the water retention and bloating in my belly. I fit into jeans that I thought I would have to throw away. My hips and belly trimmed right out. Five pounds off. Back to normal, even better.
So far I eat beans (as long as they are cooked with kombu seaweed, brown rice, quinoa, walnuts, sunflower seeds, sesame seeds, almonds, kale, collards, spinach, cabbage, celery, brown rice pasta, organic raw apple cider vinegar, olive oil, coconut oil. I'll add more in as I go along. Doctor didn't give me the ok yet to get rid of all meat, so a little bit of chicken or sardine but I can't wait to get rid of them too. I take flax seed oil. Everything organic. B vitamins, digestive enzymes(Interfase Plus) and probiotics and prebiotics, those that the doctor recommended. Magnesium, and he has me taking zinc picolinate, and b-6. It's such a relief to not feel all bloated and constipated.
I usually drink water but have some peppermint tea or pao d'arco tea, organic which is good for getting rid of yeast too. So no gluten, sugar, caffiene, alcohol, corn, or dairy and soon to be no meat or meat derivitives.
I used to have low blood sugar but diet changed that. There are some supplements that I took too that leveled it out, but really the diet does that. I never have a problem anymore and I eat as much as I want of the above foods. Plenty of protein in all of it.
Tez_20 said:Hello Allergic,
You seem to be going through hell with this and i hope to god it does'nt lead to coeliac because that's even more extensive with issues.
I looked at that first link and even i did'nt know about the biofilm's but i do know i suffer bloating bad i've never had a child but me my stomach swells you'd think i look 4mths easily, i get heart burn bad, constipation more than anything but since eatting better foods that on track more, foggyness and lack of concentration which susan can vouche for on that one it drives me made plus my joints hurt bad besides.
I used to lose discharge through my navel with a slight smell and the last time i had it, the doctor gave me cream to insert inside and told me i had an infection in my stoamach and the only way of release was through the navel...regarding apple cider vinegar i used to drink a cap of that neat morning and night, until ste my hubby blocked me last year but come tomorrow i'm starting it again after reading that link.
With my mouth i'm up the dentist every 3mths getting it checked and my teeth polished as i'm funny in that respect anyway been going since i was 5yrs old.
Well how your eatting those combination's of food, this is what i have daily.
Morning - Special K
Dinner time - Prune yougurt with either a banana or 2 riveta yogurt biscuits or ham sandwich.
Tea time - Salad with chicken or chicken korma or fish
Then an hour later at 7pm - 5 or 7 turkish slices for my low sugar as i have to have something as the doctors have told me.
Taking my spasms tablets though besides the lactulose and eatting what i've mentioned my bowels are alot better, at last.
Well, the pms feeling is part of the yeast die off doctor says mood affected. This link has some more of the symptoms, not all of them, I'm on high dose of Nystatin so I gradually built up over several weeks but I'm still getting herxheimer reaction. I've had this for lot of years so it will take long time for me to get the yeast levelled out.
http://www.earthtym.net/ref-herxheimer.htm
My bleeding disorder is Von Willebrands, I have Type 1, moderate. The hematomas that I got from injections were not from the b-12 itself but from the needle piercing my skin. I don't clot properly, born without the right clotting factors, genetic. I am on the forum for Von Willebrands. I was on high dose of 5-mthf folate up to 3-5 tabs twice a day. Now using the neuromethylation cream instead to get the folate in me real good .http://www.numedica.com/Product_detail.cfm?Fname=NM303 The yeast is my worst issue. It's been the mother of all evils that plague me. And the genetic issues.
http://en.wikipedia.org/wiki/Von_Willebrand_disease
God bless you for your endurance for 26 yrs. Your good sense of humor has probably saved you from going off the wall. Yeah, I think you and I could definitely write a novel, especially you for so many years.
Hugs,
Allergic
Tez_20 said:
Hello Allergic,
I've just pasted your reply into my notepad to read and start afresh, as the novels getting to long.lol
With megolablastic anaemia your red blood cells do go to large and they combine together and make blood clots quicker...i'm surposed to be on vitamin tablets but have refused because of constipation they bind me up very badly.
How much folic acid was you taking daily that's the main point if your not given enough your levels still come in low...there's some members on LWL taking up to 5 tablets daily.
If you don't mind me asking what was your bleeding disorder...as when i was given the b12 i was haemorraghing all the time besides monthly and they did a nova sure operation to stop them but i've just looked up and b12 jabs don't cause hermatomas these issues do and by what your saying sounds to me like you need the right amount of folic daily and the correct amount to keep your anaemia which you have stablized as the injection's can be given weekly, every couple of weeks, once a month or every 3mths months.
http://en.wikipedia.org/wiki/Hematoma
Well how you feel like you've got PMS 24/7 i've got PMT and i was on medication to try and help it containing b6 and the med after 5yrs never helped because with PMT i get all the symptoms you do.
He maybe checking fibrinogen but like you say it won't make no difference to what's going on with your cell counts and the size of them.
Dow mention complications mate i've had it no end for 26yrs years and it's one thing after another....it can get you down at timess.
Love Terri xxx