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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Confirm Of Protein In Urine
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24 posts in this topic

hi to all hope all is well with everyone

ok need some feedback on this one been gluten free for 4 years,still have some issues going on.my main one is the protein in the urine.my blood work was fine cbc,cmp.so was the creatine to bun ratio.i now have to collect 24 hrs sample.i guess that is to find out how much is spilling into the urine and also what type of protein is there.has anyone here ran into this before or know a celiac who has,and what it might be,and there is bubbles.

thank you for your feedback,Kryptonite

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I can't say the same is true for you but in my case the protein and also trace blood is from kidney damage from undiagnosed celiac. For myself there has been no further progression since I went gluten free but it hasn't gone away either. I should note that if I consume soy it does cause an increase in 'bubbles' and bleeding along with other reactions. This may not be the problem with you so do continue to seek answers from your doctor.

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I can't say the same is true for you but in my case the protein and also trace blood is from kidney damage from undiagnosed celiac. For myself there has been no further progression since I went gluten free but it hasn't gone away either. I should note that if I consume soy it does cause an increase in 'bubbles' and bleeding along with other reactions. This may not be the problem with you so do continue to seek answers from your doctor.

thanks for the feedback i am just trying to find out what could be the cause of the spilling of the protein.i read that some celiac people have kidney problems maybe there could be a link here.

Kryptonite

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thanks for the feedback i am just trying to find out what could be the cause of the spilling of the protein.i read that some celiac people have kidney problems maybe there could be a link here.

Kryptonite

it would seem, from whatever cause, this will be an ongoing issue. You need to take very good care of you kidneys from this point out. Question any drug given for any reason. good luck

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Hmmmmm..... Not trying to steal the thread here but this may answer something I've wondered about. In Aug. of 2010 I went to the Primary Care doc for the once a year check up. There was microscopic blood in my urine. Went back & retested 3 times. Still microscopic blood. My hubby was going through bladder cancer at the time so this rang big bells with me. I had no idea at that time that I had celiac --- didn't even know what celiac was although I had heard the word before. Anyway, I ran right away to the Urologist to get it checked out. He did all kinds of tests, a cystoscopy, a FISH test, an abdominal CT with & w/o contrast & checked the urine on 3 separate occasions. He's an EXCELLENT Uro & he finally said, "That's just what some people do. But your tests all came back fine & the cysto is fine so don't worry about it." HOWEVER, not in the Uro's purview the abdominal CT report stated a "fatty liver" which I NOW know is related to celiac. But now 2 of you say the kidneys could be bleeding from celiac. Can you guys expostulate on that a bit further knowing what I have just told you?

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it would seem, from whatever cause, this will be an ongoing issue. You need to take very good care of you kidneys from this point out. Question any drug given for any reason. good luck

hi frieze,

yeah this sounds like this is going to be a take care of the kidneys from here on in.blood work was fine cbc and cmp,but the urine the creatine and bun where elavated.go figure.anyway any other thoughts are welcome .

thank you kryptonite

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Hmmmmm..... Not trying to steal the thread here but this may answer something I've wondered about. In Aug. of 2010 I went to the Primary Care doc for the once a year check up. There was microscopic blood in my urine. Went back & retested 3 times. Still microscopic blood. My hubby was going through bladder cancer at the time so this rang big bells with me. I had no idea at that time that I had celiac --- didn't even know what celiac was although I had heard the word before. Anyway, I ran right away to the Urologist to get it checked out. He did all kinds of tests, a cystoscopy, a FISH test, an abdominal CT with & w/o contrast & checked the urine on 3 separate occasions. He's an EXCELLENT Uro & he finally said, "That's just what some people do. But your tests all came back fine & the cysto is fine so don't worry about it." HOWEVER, not in the Uro's purview the abdominal CT report stated a "fatty liver" which I NOW know is related to celiac. But now 2 of you say the kidneys could be bleeding from celiac. Can you guys expostulate on that a bit further knowing what I have just told you?

hi, i had the micro blood in one urine test and that same test was sent out to confirm the blood and it came back neg.there was something else that tipped off the test to say blood but it was not.anyway stay on top of your health,i am just so body aware of things that whwn i see something i act on it right away.so now i am going to do a 24 hr collect tonite and tomorrow. to see how much is splling into urine.

thank you kryptonite

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I think kidney problems are associated with high blood sugar also. Might be something else to check on. I put in just part of the info on the page, there is lots more to read there.

ada_logo.gif

Kidney Disease (Nephropathy)

Listen to text

  • High blood sugar can overwork the kidneys, causing them to stop working properly.
  • When diagnosed early, kidney disease can be slowed with treatment.
  • When diagnosed later, kidney failure usually results.
  • Once kidneys fail, replacement therapy via dialysis or transplant is necessary.

Kidneys are remarkable organs. Inside them are millions of tiny blood vessels that act as filters. Their job is to remove waste products from the blood.

Sometimes this filtering system breaks down. Diabetes can damage the kidneys and cause them to fail. Failing kidneys lose their ability to filter out waste products, resulting in kidney disease.

What are the symptoms?

The kidneys work hard to make up for the failing capillaries so kidney disease produces no symptoms until almost all function is gone. Also, the symptoms of kidney disease are not specific. The first symptom of kidney disease is often fluid buildup. Other symptoms of kidney disease include loss of sleep, poor appetite, upset stomach, weakness, and difficulty concentrating.

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Thank you GFinDC. I will follow the link.

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I think kidney problems are associated with high blood sugar also. Might be something else to check on. I put in just part of the info on the page, there is lots more to read there.

ada_logo.gif

Kidney Disease (Nephropathy)

Listen to text

  • High blood sugar can overwork the kidneys, causing them to stop working properly.
  • When diagnosed early, kidney disease can be slowed with treatment.
  • When diagnosed later, kidney failure usually results.
  • Once kidneys fail, replacement therapy via dialysis or transplant is necessary.

Kidneys are remarkable organs. Inside them are millions of tiny blood vessels that act as filters. Their job is to remove waste products from the blood.

Sometimes this filtering system breaks down. Diabetes can damage the kidneys and cause them to fail. Failing kidneys lose their ability to filter out waste products, resulting in kidney disease.

What are the symptoms?

The kidneys work hard to make up for the failing capillaries so kidney disease produces no symptoms until almost all function is gone. Also, the symptoms of kidney disease are not specific. The first symptom of kidney disease is often fluid buildup. Other symptoms of kidney disease include loss of sleep, poor appetite, upset stomach, weakness, and difficulty concentrating.

hi and thanks for the info my blood sugar is runs around 79-90

so thats fine my blood preasure run 125-135 systolic 80-86 dystolic so that should be ok there doc said no treatment for the tests.

doing a 24 hr collect now for micro albulmin.

thanks kryptonite

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ok got back my 24 hr test results,looks like i have leaky kidneys,the protein lose is not that much my doc said so i am now reffered to a kidney specialist.i do not know what happens from here.

kryptonite

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Hi Celiac Sisters & Brothers!

Just a little FYI on my kidney issues...

I too had blood in urine 3X and I noticed very foamy bubbles. My first 24 hr test can back at 3500+ for protein-WAY high!!! Next were more blood tests, more urine tests and then a biopsy. I was dx with FSGS (focal segmental glomerolsclerioses)(sp????)It means that some of my kidney filters are scarred...My foamy pee started in Feb 2011, my biopsy was in June. I recieved that diagnoses in Sep (LONG wait) and was put on Lisinopril. Kidney doctor sent me to a rheumatologist who did more blood work, I tested positve for HLA-DQ2 in Dec '11 I lost my gallbladder on 12/27/11....after that I sent myself back to my 3rd GI who agreed to do and a biopsy. I was put back on an acid reducer (I worked hard to get off them) because I have an ulcer in my small intestines that is NOT h. phylori. Weeks of anti biotics and waiting for results...On January 27, 2012 I was DX w/celiac disease!!!! It has been 10 years of an ever growing list of symptoms. Nobody could put the pieces together; my 24 migraines each month; my IBS, GERD, heavy menstral cycles (had a total hysterectomy with one ovary removed)8 years of consitpation, sensitivity to eye make up and jewelry, chronic sinusitus and rhinitus, hearing loss, tinnitus, chest pains, pressure in eyes, blurry vision, fear of crowds, depression, brittle & ridged nails, candida,hair & eyebrow loss,neck pain, back pain, bunions,feet pain and restless legs(neuropathy), and now osteo arthritis but I am SOOOOO happy to have a DX. :PB) Three days into the diet my constipation was gone and the tinnitus. But they are both back...(7 weeks in-started right after biopsy-still a newbie) I am very careful...I need to start eliminating other foods to see if it's a gluten & food combination.

P.S. I have lost 8 lbs (I was a wieght gainer-I was always starving!!!!)

May God continue to Bless you and heal you!

I pray that American doctors open their eyes, ears and medical books=it's overdue!!!!!

P.P.S. I love Celiac.com

I need you all to heal physically, mentally and spiritually!!

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Hi Celiac Sisters & Brothers!

Just a little FYI on my kidney issues...

I too had blood in urine 3X and I noticed very foamy bubbles. My first 24 hr test can back at 3500+ for protein-WAY high!!! Next were more blood tests, more urine tests and then a biopsy. I was dx with FSGS (focal segmental glomerolsclerioses)(sp????)It means that some of my kidney filters are scarred...My foamy pee started in Feb 2011, my biopsy was in June. I recieved that diagnoses in Sep (LONG wait) and was put on Lisinopril. Kidney doctor sent me to a rheumatologist who did more blood work, I tested positve for HLA-DQ2 in Dec '11 I lost my gallbladder on 12/27/11....after that I sent myself back to my 3rd GI who agreed to do and a biopsy. I was put back on an acid reducer (I worked hard to get off them) because I have an ulcer in my small intestines that is NOT h. phylori. Weeks of anti biotics and waiting for results...On January 27, 2012 I was DX w/celiac disease!!!! It has been 10 years of an ever growing list of symptoms. Nobody could put the pieces together; my 24 migraines each month; my IBS, GERD, heavy menstral cycles (had a total hysterectomy with one ovary removed)8 years of consitpation, sensitivity to eye make up and jewelry, chronic sinusitus and rhinitus, hearing loss, tinnitus, chest pains, pressure in eyes, blurry vision, fear of crowds, depression, brittle & ridged nails, candida,hair & eyebrow loss,neck pain, back pain, bunions,feet pain and restless legs(neuropathy), and now osteo arthritis but I am SOOOOO happy to have a DX. :PB) Three days into the diet my constipation was gone and the tinnitus. But they are both back...(7 weeks in-started right after biopsy-still a newbie) I am very careful...I need to start eliminating other foods to see if it's a gluten & food combination.

P.S. I have lost 8 lbs (I was a wieght gainer-I was always starving!!!!)

May God continue to Bless you and heal you!

I pray that American doctors open their eyes, ears and medical books=it's overdue!!!!!

P.P.S. I love Celiac.com

I need you all to heal physically, mentally and spiritually!!

Welcome Colleen. Hopefully you will continue to improve but gluten can be sneaky so we do often have some ups and downs at first. If you go with whole foods you will heal the fastest and do make sure you are doing what you need to do to keep yourself safe from cross contamination like a new dedicated toaster, replacing strainers, not sharing condiments and nut butters, jelly etc. Some of us have issues with soy and dairy so those are best avoided for now and do be sure to check any meds and supplements you are taking to make sure they are gluten free.

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ok got back my 24 hr test results,looks like i have leaky kidneys,the protein lose is not that much my doc said so i am now reffered to a kidney specialist.i do not know what happens from here.

kryptonite

Hopefully the specialist will be able to help with this. Keep us posted.

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Welcome Colleen. Hopefully you will continue to improve but gluten can be sneaky so we do often have some ups and downs at first. If you go with whole foods you will heal the fastest and do make sure you are doing what you need to do to keep yourself safe from cross contamination like a new dedicated toaster, replacing strainers, not sharing condiments and nut butters, jelly etc. Some of us have issues with soy and dairy so those are best avoided for now and do be sure to check any meds and supplements you are taking to make sure they are gluten free.

Thanks for your warm welcome!!! I have the toaster and separate condiments. I checked all my meds & vitamins. No soy I can do, but no dairy will be tough (love my cheese!) I wish I went whole food only right away!!! I am getting there...No doctor told me to avoid oranges while my ulcer is healing...I am in ulcer pain today :blink: I have read that even though I have damage to my kidneys, that going gluten-free will stop any new damage :P love it! :wub:

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ok got back my 24 hr test results,looks like i have leaky kidneys,the protein lose is not that much my doc said so i am now reffered to a kidney specialist.i do not know what happens from here.

kryptonite

Maybe it is something simple to fix, or a temporary situation Krypto. Anyway, I hope so. Let us know what develops with the new doctor if you don't mind.

Thanks for your warm welcome!!! I have the toaster and separate condiments. I checked all my meds & vitamins. No soy I can do, but no dairy will be tough (love my cheese!) I wish I went whole food only right away!!! I am getting there...No doctor told me to avoid oranges while my ulcer is healing...I am in ulcer pain today :blink: I have read that even though I have damage to my kidneys, that going gluten-free will stop any new damage :P love it! :wub:

Welcome Colleen. Good to have you here. Your story of a slow diagnosis is unfortunately pretty common. Maybe that will change someday.

A good way to start the gluten-free diet is with a simple whole foods diet. That means no processed foods, mostly whole foods like fruits, veggies, and meats. Limited spices is a good idea too. The whole foods diet also reduces the chance of cross-contamination and making mistakes in the beginning. Plus the labels are much shorter and quicker to read. Another thing to avoid is sugar and sodas. But add pro-biotics and maybe some digestive enzymes too.

It is not unusual for people to alternate between good and bad days for a while as their intestines heal and begin to stabilize. If you get gassy peppermint tea with stevia may help. Plus it tastes good. :)

Did your docs check you for nutrient shortages? Sometimes we are low on vitamins and minerals due to mal-absorption in the intestines. It's good to know about that early on so you can focus some effort on correcting it.

I am glad the Lord led you to the site and thanks for your wishes that we heal. I don't know if that's possible after seeing those glasses you wear though. eek! :Just kidding. )

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Hopefully the specialist will be able to help with this. Keep us posted.

hi ravenwoodglass,

i will let all know what the outcome is here but it seems to be the start of CKD as with all the stuff you and all have been talking about .

cheers, kryptonite

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Maybe it is something simple to fix, or a temporary situation Krypto. Anyway, I hope so. Let us know what develops with the new doctor if you don't mind.

Welcome Colleen. Good to have you here. Your story of a slow diagnosis is unfortunately pretty common. Maybe that will change someday.

A good way to start the gluten-free diet is with a simple whole foods diet. That means no processed foods, mostly whole foods like fruits, veggies, and meats. Limited spices is a good idea too. The whole foods diet also reduces the chance of cross-contamination and making mistakes in the beginning. Plus the labels are much shorter and quicker to read. Another thing to avoid is sugar and sodas. But add pro-biotics and maybe some digestive enzymes too.

It is not unusual for people to alternate between good and bad days for a while as their intestines heal and begin to stabilize. If you get gassy peppermint tea with stevia may help. Plus it tastes good. :)

Did your docs check you for nutrient shortages? Sometimes we are low on vitamins and minerals due to mal-absorption in the intestines. It's good to know about that early on so you can focus some effort on correcting it.

I am glad the Lord led you to the site and thanks for your wishes that we heal. I don't know if that's possible after seeing those glasses you wear though. eek! :Just kidding. )

hi GFinDC,

thanks i will post what ever happens here so we all could have this to look back on.

thanks kryptonite

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Maybe it is something simple to fix, or a temporary situation Krypto. Anyway, I hope so. Let us know what develops with the new doctor if you don't mind.

Welcome Colleen. Good to have you here. Your story of a slow diagnosis is unfortunately pretty common. Maybe that will change someday.

A good way to start the gluten-free diet is with a simple whole foods diet. That means no processed foods, mostly whole foods like fruits, veggies, and meats. Limited spices is a good idea too. The whole foods diet also reduces the chance of cross-contamination and making mistakes in the beginning. Plus the labels are much shorter and quicker to read. Another thing to avoid is sugar and sodas. But add pro-biotics and maybe some digestive enzymes too.

It is not unusual for people to alternate between good and bad days for a while as their intestines heal and begin to stabilize. If you get gassy peppermint tea with stevia may help. Plus it tastes good. :)

Did your docs check you for nutrient shortages? Sometimes we are low on vitamins and minerals due to mal-absorption in the intestines. It's good to know about that early on so you can focus some effort on correcting it.

I am glad the Lord led you to the site and thanks for your wishes that we heal. I don't know if that's possible after seeing those glasses you wear though. eek! :Just kidding. )

GFinDC; Those glasses keep me sane!!!! Thank you for your knowledge, you hit the nail on the head with it! I working on my vitamins and minerals. I am now reading a book called Fiber Menance-best $20 I've spent in a long time!!! You are a Godsend! :P

Hang in there Kryptonite, news sounds good so far! :rolleyes: But please keep us posted!

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ok saw the kidney doc yesterday i went to get lab work done that he had ordered.get this 15 different blood tests. after 12 vials of blood. have ultrasound march 8,he does not expect to find anything wrong because my blood work from my intern has no flaws cmp was fine and cbc was on jan 5.he wants to rule out other conditions.he thinks the kidneys are inflamed and thats what is causing the spill my numbers with the 24 hr test were 1,000 over a 24 hr.

kryptonite

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ok saw the kidney doc yesterday i went to get lab work done that he had ordered.get this 15 different blood tests. after 12 vials of blood. have ultrasound march 8,he does not expect to find anything wrong because my blood work from my intern has no flaws cmp was fine and cbc was on jan 5.he wants to rule out other conditions.he thinks the kidneys are inflamed and thats what is causing the spill my numbers with the 24 hr test were 1,000 over a 24 hr.

kryptonite

ok got some news here.all the blood work that i had done which was out of this world to rule out every disease known to mankind,turned out to be all normal,so i am left with a kidney biopsy to determine what the disease i have i guess.anyone here have one done and do i really need this to be done feedback would be helpful.

thanks kryptonite

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saw the kidney doc this week all blood work was great creatine was also good also.he had told me that i am in pretty good shape,because there is no loss of functions anywhere,as of now.he has me on a med that will hopefully cut down the potein passing threw.i am to see him in 3 months he said if the bloodwork is the same we are good.same with the urine work also.biopsy will only be needed if blood is off and more protein is in urine. :D he also mentioned that it is possible that since i have celiac that this is why this is happening.bottom line he said people with celiac have a greater chance of developing kidney issues this doc is out of yale new haven in ct.

hope all is well with all

kryptonite

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Sounds better Krypto. Thanks for keeping us updated. I don't know about the biopsy but maybe someone else will chime in on that.

Have you tried an elimination diet? I don't know if that would help or not, but seems like food intolerances can cause an awfully wide range of symptoms. Sore joints, migraines, skin rashes, liver problems, etc. So why not kidney issues too? Just a thought.

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Sounds better Krypto. Thanks for keeping us updated. I don't know about the biopsy but maybe someone else will chime in on that.

Have you tried an elimination diet? I don't know if that would help or not, but seems like food intolerances can cause an awfully wide range of symptoms. Sore joints, migraines, skin rashes, liver problems, etc. So why not kidney issues too? Just a thought.

hi GFinDC,

thanks for the reply,i hardly eat as it is lol ,you know how that is.i think i have tried everything under the sun.i guess i will follow his orders,and see him in 3 months.i am stumped about this.but its all ok if you can deal with celiac you can deal with this issue also.,have no choice.

will post back in 3 months with report.

hope nothing else happens btwn now and then lol.

take care kryptonite

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      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
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