Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Testing Question


ker0pi

Recommended Posts

ker0pi Rookie

Hello,

After years of pain issues my Doctor is testing me for several auto-immune disorders among them was NOT Celiac. After doing some research about the other auto-immune disorders I stumbled across Celiac, it matches everything I have been suffering these past years. I decided to go off Gluten to see if it helped. After 4 days my pain level has reduced by about 50%. I emailed my Doctor and he has agreed to test me for Celiac. Everything I have read though says DON'T stop Gluten before a blood test. If I resume eating Gluten after just 4 days off will it reduce the antibodies in my blood? Should I eat more than just a piece of bread everyday before I get my blood drawn? Thank You for any suggestions or advice you might offer.

Michelle

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 54
  • Created
  • Last Reply
IrishHeart Veteran

4 days is not a lot of time, so no worries, but yes, go back to eating your regular gluteny diet. Have whatever you want!! Have a croissant for me will you? :) ooh, and if you can find it, some baklava (those are the two things I miss and cannot recreate)

When is the test?

Feeling better off gluten is a good indicator though! You may be "one of us".

Thank God you have such good doctor who is open to testing for celiac disease.

He is rare!

Keep us posted!

Link to comment
Share on other sites
MitziG Enthusiast

Have some real deep dish pizza for me too! And maybe a luscious pudding filled doughnut?

And yes, you have a bang up doctor!

Link to comment
Share on other sites
ker0pi Rookie

Thank You for the support. I am waiting on a new insurance card, my employer changed insurance companies, the insurance rep said about 2 weeks. I ate some bread last night, my husband looked at me like I was taking a Cyanide capsule. He is amazed at my improvement after only 4 days off gluten and does not want to watch me go back but understands I have to if I want the most accurate results. We are good Italians and I've eaten bread or whole wheat pasta everyday of my life. I will miss pasta. I had an english muffin with breakfast this morning for good measure and I got sick about an hour after I ate it. My abdomen is completely distended again and my aches are returning slowly. I feel like I have a hang over, no energy and I just want to curl up and go to sleep, pretty much how I've felt for the past 4 years. I think I'm going to eat 1 piece of bread everyday and then load up on pasta 3 to 4 day before I get my blood test. As for my Doctor, I saw a chiropractor for 2 years and then did physical therapy for 7 months and still have daily pain in my joints and can't stand for more then 10 minutes at a time without extreme pain. After I completed all that he finally agrees something is going wrong with my body. Now that we are going down this path he is very open to suggestions. I've already been through Thyroid, Vitamin Deficiencies, and general organ functions tests - all normal. I will keep you posted on my results.

Michelle

And this Friday, when they bring doughnuts to work I'll have a Custard filled one for ya!

Link to comment
Share on other sites
beachbirdie Contributor

Thank You for the support. I am waiting on a new insurance card, my employer changed insurance companies, the insurance rep said about 2 weeks. I ate some bread last night, my husband looked at me like I was taking a Cyanide capsule. He is amazed at my improvement after only 4 days off gluten and does not want to watch me go back but understands I have to if I want the most accurate results. We are good Italians and I've eaten bread or whole wheat pasta everyday of my life. I will miss pasta. I had an english muffin with breakfast this morning for good measure and I got sick about an hour after I ate it. My abdomen is completely distended again and my aches are returning slowly. I feel like I have a hang over, no energy and I just want to curl up and go to sleep, pretty much how I've felt for the past 4 years. I think I'm going to eat 1 piece of bread everyday and then load up on pasta 3 to 4 day before I get my blood test. As for my Doctor, I saw a chiropractor for 2 years and then did physical therapy for 7 months and still have daily pain in my joints and can't stand for more then 10 minutes at a time without extreme pain. After I completed all that he finally agrees something is going wrong with my body. Now that we are going down this path he is very open to suggestions. I've already been through Thyroid, Vitamin Deficiencies, and general organ functions tests - all normal. I will keep you posted on my results.

Michelle

And this Friday, when they bring doughnuts to work I'll have a Custard filled one for ya!

You don't have to go without pasta! There are several good brands of gluten-free pasta out there, some are better than others. You'll have to give them all a try and see which one satisfies your family the best.

Open Original Shared Link makes one with rice, potato,and soy. I don't use it much because I avoid soy as much as possible, but it cooks up real nice and doesn't fall apart in re-heating.

Open Original Shared Link makes good ones out of rice, corn, and pea. We love everything we've had from schar, including cookies and crackers.

Open Original Shared Link rice pastas are awesome.

Link to comment
Share on other sites
IrishHeart Veteran

Have 2, sweetie. Custard is my fav!!

As for the PT and chiro and joint pain, etc.--well, that was MY life for 12 YEARS with no relief. Plus burning nerve pain and parasthesia and weakness and muscle wasting. I am glad you are nipping this in the bud now before it gets to the point where you are debilitated. I was headed for a wheelchair, but I refused to believe that was my only option. I could not stand, sit, lie down or walk without agony. I searched for an answer, just like you are.

I struggle to get my life back. You will rebound faster, I am betting.

Hon, no matter what the test results, if being off gluten has helped you, then that is what you need to do.

We'll help you. We were ALL HUGE pasta and bread eaters.

You can still have pasta and bread and goodies, they are just made differently.

Link to comment
Share on other sites
ker0pi Rookie

You don't have to go without pasta! There are several good brands of gluten-free pasta out there, some are better than others. You'll have to give them all a try and see which one satisfies your family the best.

Open Original Shared Link makes one with rice, potato,and soy. I don't use it much because I avoid soy as much as possible, but it cooks up real nice and doesn't fall apart in re-heating.

Open Original Shared Link makes good ones out of rice, corn, and pea. We love everything we've had from schar, including cookies and crackers.

Open Original Shared Link rice pastas are awesome.

Thank You for the note about Bio Nature that is the exact brand we always buy, I love their stuff!!! I looked at the website and realized those bags sit on the shelf below the ones we buy. OMG!! Pesto Pasta for Dinner still!!!! Thank You so much for the suggestions and support it helps A LOT!!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ker0pi Rookie

Have 2, sweetie. Custard is my fav!!

As for the PT and chiro and joint pain, etc.--well, that was MY life for 12 YEARS with no relief. Plus burning nerve pain and parasthesia and weakness and muscle wasting. I am glad you are nipping this in the bud now before it gets to the point where you are debilitated. I was headed for a wheelchair, but I refused to believe that was my only option. I could not stand, sit, lie down or walk without agony. I searched for an answer, just like you are.

I struggle to get my life back. You will rebound faster, I am betting.

Hon, no matter what the test results, if being off gluten has helped you, then that is what you need to do.

We'll help you. We were ALL HUGE pasta and bread eaters.

You can still have pasta and bread and goodies, they are just made differently.

Thank You for sharing that with me. I can't stand long enough to make dinner, a walk up the stairs is exhausting and I'm beginning to see the start of the muscle wasting. I get up at 4:30 am every week day, walk for 20 minutes on the treadmill (usually at about 2.4 mph and tripping on my own feet for the last 5 min) and then do conditioning with 3lb weights and then my PT exercises and stretches. My husband use to be a personal trainer and he has been so concerned with the fact that I have been on this exercise regimen for 7 months and I am getting weaker not stronger. I can't even open a jar or a bottle of juice without using a bottle opener to help. My almost 6 year old has to carry most of the grocery bags up the stairs for me and the courtesy clerk at the co-op where I shop knows my needs and bags my groceries extra light and carries them out for me - she is awesome and comes right over whenever she sees me at the check out. I have a great support from family and friends but seriously, I'm tired of leaning on them for everything. My husband does all the dishes, the laundry, bathes are child and takes over cooking dinner when my body gives out. I LOVE to cook and I stubbornly start many many meals and until Monday night I hadn't finished one with out incredible pain in 4 years. I really just want to stop eating Gluten but I keep telling myself, what's 2 more weeks after so many years?

Link to comment
Share on other sites
IrishHeart Veteran

My heart is in my throat right now, choking back tears for you--- because I can relate. THIS was ME for so long.

Listen, you cannot make those muscles DO all that right now--they are probably wasting and you have lost mass (as mine did) from malabsorption. I forced myself to keep moving and exercising, despite the horrid pain because I was told it would be good for me. (This was before I knew what it was)

Take a break from the weights until you are better. My doc warns me to take it very slow or you could damage them.

My story is here on this site so, I will not bore anyone with it again, but suffice to say, I had to stop working out at the gym because I could not feel my back or legs anymore. I was in AGONIZING pain. I needed help getting dressed and a walk up my driveway left me winded and weak. I could not open a jar or lift a pan and I had to stop gardening and swimming and every thing physical as I developed dozens of other symptoms and my brain was impacted. I really love cooking too, hon and it took everything I had to do it. I was also very sick in my stomach and could barely keep food in. I was a mess for a long time.

I am doing most of those things again, now, slowly and I had to fight hard to get here. I had this pain and weakness beginning in my early 30's and it lasted for 20 years (I heard the word "fibromyalgia" but that is not what it was. I heard other words too--all wrong) It was celiac.

You are much younger, so I think you will recover faster.

There is an explanation for all this, hon and I'll be stunned if you are not a celiac. Even if you are NEG on testing, please, please go off gluten and get well.

I really want to know how you make out, so please keep us posted.

You sound so much like me it is scary.

Link to comment
Share on other sites
ker0pi Rookie

My heart is in my throat right now, choking back tears for you--- because I can relate. THIS was ME for so long.

Listen, you cannot make those muscles DO all that right now--they are probably wasting and you have lost mass (as mine did) from malabsorption. I forced myself to keep moving and exercising, despite the horrid pain because I was told it would be good for me. (This was before I knew what it was)

Take a break from the weights until you are better. My doc warns me to take it very slow or you could damage them.

My story is here on this site so, I will not bore anyone with it again, but suffice to say, I had to stop working out at the gym because I could not feel my back or legs anymore. I was in AGONIZING pain. I needed help getting dressed and a walk up my driveway left me winded and weak. I could not open a jar or lift a pan and I had to stop gardening and swimming and every thing physical as I developed dozens of other symptoms and my brain was impacted. I really love cooking too, hon and it took everything I had to do it. I was also very sick in my stomach and could barely keep food in. I was a mess for a long time.

I am doing most of those things again, now, slowly and I had to fight hard to get here. I had this pain and weakness beginning in my early 30's and it lasted for 20 years (I heard the word "fibromyalgia" but that is not what it was. I heard other words too--all wrong) It was celiac.

You are much younger, so I think you will recover faster.

There is an explanation for all this, hon and I'll be stunned if you are not a celiac. Even if you are NEG on testing, please, please go off gluten and get well.

I really want to know how you make out, so please keep us posted.

You sound so much like me it is scary.

I was at work when I read this and had to go to the restroom to finish crying. The fact that this is likely the answer to what I've been suffering is an overwhelming relief. Thank You so much for leading the way and be a part of sites like this so there is a place for people like me to talk with people like you. By the way, I'm 34 and it all started shortly before my 30th birthday. My son is supper excited that I might actually be able to play with him some day. My husband is feeling relieved as I am that there just might be a definitive answer very soon.

Link to comment
Share on other sites
IrishHeart Veteran

I was at work when I read this and had to go to the restroom to finish crying. The fact that this is likely the answer to what I've been suffering is an overwhelming relief.

If you had not felt a reduction in your pain off gluten---you said by 50%, right?--then I would not be so sure.

But if eliminating gluten has given you that kind of amazing relief, then, my gut says it's part of the problem.

We are not doctors on here and I do not want you to pin all your hopes on MY experience and symptoms, ok? If that test is negative, you are going to be crushed and think it's not the answer.

But people (like me) test negative all the time.

But I have met MANY women with this "fibro" and they go off gluten and that pain goes away. My very good friend had pain like this for 35 years. She went gluten-free, at my urging, because she read that it is associated with gluten and it is largely gone. My very wise MT who also helps me with my physical therapy and recovery has people try a gluten-free diet and their pain vanishes in a few weeks.

Coincidence? hardly.

Do you have other symptoms besides the muscle/joint pain?

There are over 300 symptom associated with celiac disease.

Link to comment
Share on other sites
ker0pi Rookie

If you had not felt a reduction in your pain off gluten---you said by 50%, right?--then I would not be so sure.

But if eliminating gluten has given you that kind of amazing relief, then, my gut says it's part of the problem.

We are not doctors on here and I do not want you to pin all your hopes on MY experience and symptoms, ok? If that test is negative, you are going to be crushed and think it's not the answer.

But people (like me) test negative all the time.

But I have met MANY women with this "fibro" and they go off gluten and that pain goes away. My good friend had pain like this for 35 years. She went gluten-free, at my urging, and it is largely gone. My MT/PT has people try a gluten-free diet and their pain vanishes in a few weeks.

Coincidence? hardly.

Do you have other symptoms besides the muscle/joint pain?

There are over 300 symptom associated with celiac disease.

I am being realistic about the possibility of a negative test, I 'm going off gluten either way because I felt better, my husband even commented about how much improvement he noticed when I walked and he said my hair started to look shiny again, my skin was practically glowing. My hopes are centered around the idea that I might be able to do something to help. My doctor's plan at this point is to try to get me a Fibro diagnosis from a Rhemotologists so that I have it document when I become so debilitated I can no longer work, his words. I have extreme exhaustion, constant muscle cramps (mostly calf and thigh cramps), joint pain in my wrists, hips, and sacrum area. I have numbness and tingling in my arms and legs and have had balance issues, I walk into walls and navigating doorways has been very difficult. I get dizzy spells that create a bit of vertigo like symptoms. I've had a full neurological work up and everything came back negative. My doctor is leaning towards Fibor or MS. This is the beginning of the autoimmune path for me, but I'm relived my doctor is willing to do it. After my nuero work up he suggested it was all in my head and I might just need talk therapy to feel better. I told him I wanted to do PT because talking about my pain wasn't going to make it stop. I saw improvement in my range of motion and energy levels at the beginning of PT but then I plateaued and now I'm worsening. I have a lot of days with the Fibro fog, thinking is just hard some days, I've been very forgetful lately as well. I bruise very easily, never considered that a symptom of anything before. And until I read the Celiac symptoms I never considered the fact that I eat twice what my husband does and never gain weight to be a symptom of anything either. I eat about every 2 1/2 to 3 hours or I have hypoglycemic episodes. I didn't gain weight until I started getting all the joint pain and muscle weakness, and stopped being so active, then I gained about 15lbs, I've managed to lose 7 of that recently. When I was pregnant with my son I gained 19lbs but had a 9lb 8oz baby. All these things are starting to add up in my head as possible support for Celiac, it may even be related to my chronic constipation and abdominal bloating. I'm sure there are other things I'm forgetting but that's a huge chunk of my history.

Link to comment
Share on other sites
ker0pi Rookie

If you had not felt a reduction in your pain off gluten---you said by 50%, right?--then I would not be so sure.

But if eliminating gluten has given you that kind of amazing relief, then, my gut says it's part of the problem.

We are not doctors on here and I do not want you to pin all your hopes on MY experience and symptoms, ok? If that test is negative, you are going to be crushed and think it's not the answer.

But people (like me) test negative all the time.

But I have met MANY women with this "fibro" and they go off gluten and that pain goes away. My good friend had pain like this for 35 years. She went gluten-free, at my urging, and it is largely gone. My MT/PT has people try a gluten-free diet and their pain vanishes in a few weeks.

Coincidence? hardly.

Do you have other symptoms besides the muscle/joint pain?

There are over 300 symptom associated with celiac disease.

Just thought of a few other things. I really don't think MS fits for me because I do not have the issues associated with heat the are very typical for MS sufferers. I have the opposite, heat helps the muscle cramps and when it is cold outside or I'm sitting in a draft my leg cramps intensify 3 fold. I'm also currently taking high dose anti-inflammatory on a daily basis so I can walk. I have been sick more this year than any year prior. I got the flu back to back in March 2 weeks between infections and I became so severely dehydrated because I could not keep even water down the second time around and my muscle cramps became so bad I could not stand or walk the pain was unbearable. My husband carried me into the ER and I did not receive relief from the muscle cramps until after 3 bags of fluid and an intravenous dose of anti-inflammatory. The ER doc told me to take over-lapping doses of anti-inflammatory for the next 5 days and I could walk better then I had in years, as soon as I stopped the intense pain came back. The anti-inflammatory helping the pain is part of why my doc is leaning towards the auto-immune path.

Link to comment
Share on other sites
roxieb73 Contributor

Thank You for sharing that with me. I can't stand long enough to make dinner, a walk up the stairs is exhausting and I'm beginning to see the start of the muscle wasting. I get up at 4:30 am every week day, walk for 20 minutes on the treadmill (usually at about 2.4 mph and tripping on my own feet for the last 5 min) and then do conditioning with 3lb weights and then my PT exercises and stretches. My husband use to be a personal trainer and he has been so concerned with the fact that I have been on this exercise regimen for 7 months and I am getting weaker not stronger. I can't even open a jar or a bottle of juice without using a bottle opener to help. My almost 6 year old has to carry most of the grocery bags up the stairs for me and the courtesy clerk at the co-op where I shop knows my needs and bags my groceries extra light and carries them out for me - she is awesome and comes right over whenever she sees me at the check out. I have a great support from family and friends but seriously, I'm tired of leaning on them for everything. My husband does all the dishes, the laundry, bathes are child and takes over cooking dinner when my body gives out. I LOVE to cook and I stubbornly start many many meals and until Monday night I hadn't finished one with out incredible pain in 4 years. I really just want to stop eating Gluten but I keep telling myself, what's 2 more weeks after so many years?

OMG........... It is like I am reading about myself except the 7 year old is carrying the groceries and I am a single mother. I almost can't make if from my car to the front door of my work and I park right on the side of the building. I had to change to a sit down job from one where I was on my feet 12 hours a night. I feel like an invalid and just knew I would be on disability and in a wheel chair soon!!!! I am 39 and feel like I am literally dying! My poor son.... he had a picture displayed in the local art fair and I had to stop about every 6 feet and sit down to rest for 5 mins before I could get up and go again. It was just awful. All he wanted was for his mom to walk through the fair with him and go see his picture. :( 6 months ago I could now I can not stand for 5 mins. I can not go on a regular shopping trip. I am in physical therapy but getting worse not better. I went gluten free for 2 weeks and was feeling sooooo much better I now am back on gluten for testing and just feel like shooting myself because I am sooooo miserable.

Link to comment
Share on other sites
ker0pi Rookie

OMG........... It is like I am reading about myself except the 7 year old is carrying the groceries and I am a single mother. I almost can't make if from my car to the front door of my work and I park right on the side of the building. I had to change to a sit down job from one where I was on my feet 12 hours a night. I feel like an invalid and just knew I would be on disability and in a wheel chair soon!!!! I am 39 and feel like I am literally dying! My poor son.... he had a picture displayed in the local art fair and I had to stop about every 6 feet and sit down to rest for 5 mins before I could get up and go again. It was just awful. All he wanted was for his mom to walk through the fair with him and go see his picture. :( 6 months ago I could now I can not stand for 5 mins. I can not go on a regular shopping trip. I am in physical therapy but getting worse not better. I went gluten free for 2 weeks and was feeling sooooo much better I now am back on gluten for testing and just feel like shooting myself because I am sooooo miserable.

You just described every school event I've been to with my son. I have to constantly tell him to slow down, stop and wait with me for a minute until I can go again. He started Kindergarten this year and I feel like I have failed him some how as a mother because I have not be able to participate in most of the schools events. My husband worked weekends up until 6 weeks ago after my ER trip and he insisted that he have at least one weekend day off with me to help take the load off. I am so sorry you are doing this as a single mom. It has been my deepest fear, something happening to my husband and my son being stuck with an invalid for a mother. Good luck with your gluten testing. I understand the part wanting to shoot yourself. I told myself I would eat a piece of bread at night and one with breakfast and I just couldn't bring myself to eat one with breakfast knowing what a horrible day I was going to have. Hang in there, I'm doing this for my son. Since Celiac is hereditary I want to have a diagnosis so that a doctor will look for it first with him if he ever suffers like this later in life and potentially get him tested too if I come out positive. No matter what I'm done with gluten after the blood test.

Link to comment
Share on other sites
roxieb73 Contributor

You just described every school event I've been to with my son. I have to constantly tell him to slow down, stop and wait with me for a minute until I can go again. He started Kindergarten this year and I feel like I have failed him some how as a mother because I have not be able to participate in most of the schools events. My husband worked weekends up until 6 weeks ago after my ER trip and he insisted that he have at least one weekend day off with me to help take the load off. I am so sorry you are doing this as a single mom. It has been my deepest fear, something happening to my husband and my son being stuck with an invalid for a mother. Good luck with your gluten testing. I understand the part wanting to shoot yourself. I told myself I would eat a piece of bread at night and one with breakfast and I just couldn't bring myself to eat one with breakfast knowing what a horrible day I was going to have. Hang in there, I'm doing this for my son. Since Celiac is hereditary I want to have a diagnosis so that a doctor will look for it first with him if he ever suffers like this later in life and potentially get him tested too if I come out positive. No matter what I'm done with gluten after the blood test.

My son's symptoms are the ones that led to Celiac. I am getting tested first. He has bad tooth enamel, white poo, ADHD among other things.

Link to comment
Share on other sites
IrishHeart Veteran

Okay, well, all these symptoms are certainly related to celiac/gluten. I choked up again as I had the same memory of my hubs carrying me into the ER several times because I was so dehydrated and had abdominal pain so crippling, I begged him to just shoot me. YEARS of this baloney. Insanity. He made me drink water and salt/sugar to keep my electrolytes balanced. He helped keep me coherent, but my brain function was severely impacted. I banged off walls, covered in bruises. I walked sideways and fell down. You think you have "fog" now, you do not want what happens next, sweetie.

You can still work? That is amazing.

As my muscles deteriorated and I went from doctor to doctor, we tried everything known to man, spending thousands of dollars, seeing people in 3 different states: PT, MT, myofascial release, homeopathy, acupuncture, blah blah blah....meanwhile, I was dying. Could not sleep more than 1-2 hours a night, the pain and burning was so bad.

He had to prop me up on the toilet while I passed everything, swabbing me down with cold cloths so I did not pass out, losing everything both ways.

I lost 95 lbs. and my hair.

"Fibro fog??" :rolleyes: I heard all that, too.

I heard possible MS, lupus, and spondyloarthropy, too. NOPE!! It's BS!! It's celiac.

Get tested, and no matter what it says, go gluten-free, get well.

Keep me posted. I care!

Link to comment
Share on other sites
ker0pi Rookie

Ms Irish Heart.

This is KerOpi's husband responding. Please know, though what you have gone through is excruciating, and that my wife's and my heart go out to you, it is not in vain. If for no one else, you ladies on here have helped my wife feel not alone, not crazy, that there IS hope for her. My heart goes out to your husband as well, for what he has had to go through watching the woman he loves falling apart. My wife is a bookkeeper, and if it weren't for the fact that she sits at a desk all day, there is no way she would still be working. The difference just a few days made was astounding in my eyes. Knowing she was going to take more of that into her body so that she would get a diagnosis was like watching my wife eat broken glass. I had to clench my teeth and breathe knowing that it is for the best, and short term so that she can get the test, and that it provides a path way for our son to be tested.

Thank you for sharing, thank you for this. My wife was crying too hard to reply, and I felt moved to let you know how much it has meant to my wife to find your support on here.

-Kakavian

Link to comment
Share on other sites
IrishHeart Veteran

Ms Irish Heart.

This is KerOpi's husband responding. Please know, though what you have gone through is excruciating, and that my wife's and my heart go out to you, it is not in vain. If for no one else, you ladies on here have helped my wife feel not alone, not crazy, that there IS hope for her. My heart goes out to your husband as well, for what he has had to go through watching the woman he loves falling apart. My wife is a bookkeeper, and if it weren't for the fact that she sits at a desk all day, there is no way she would still be working. The difference just a few days made was astounding in my eyes. Knowing she was going to take more of that into her body so that she would get a diagnosis was like watching my wife eat broken glass. I had to clench my teeth and breathe knowing that it is for the best, and short term so that she can get the test, and that it provides a path way for our son to be tested.

Thank you for sharing, thank you for this. My wife was crying too hard to reply, and I felt moved to let you know how much it has meant to my wife to find your support on here.

-Kakavian

Kakavian...are you Armenian? me too, Dad's side! :)

Now, I am sobbing and my husband's eyes are full of tears, too. I read what you wrote out loud to him. He says "Get tested, but even if it is negative, go gluten-free!" Think he believes your wife has a gluten problem, too? Yes, he does.

I swear, I felt my heart crack one day when he quietly said to one doctor, "I just want my wife back". He felt helpless and yet, he stood by me 100% and never wavered in his love or devotion. He said I saved my own life by fighting for a diagnosis, researching tirelessly for 3 years, even though my cognitive skills were impacted, but I could not have done it without him. He is my rock and my heartbeat. Obviously, you are the same for your wife.

I am going to privately message you now with my email and phone number so we can speak more, if you wish.

You guys are not alone.

Link to comment
Share on other sites
IrishHeart Veteran

Ker,

Take a look at this and see if you have any of these symptoms as well. I want you to start making a list of all your symptoms for your doctor.

Open Original Shared Link

Link to comment
Share on other sites
  • 2 weeks later...
ker0pi Rookie

I received my new insurance card yesterday and I'm going in for the blood draw this afternoon. Then I am going gluten-free forever. This few weeks I have kept my gluten intake to lunch or evenings only and I have had symptoms within 1/2 hour of ingestion. There is no doubt in my mind that gluten is causing a response in my body. This morning I decided to have a piece of toast with my omelet just to add a little extra gluten for today and I got very ill, I had to figure out a second breakfast. It was the first gluten at breakfast time I have had since restricting my gluten intake. My body is obviously showing me this is the problem.

Link to comment
Share on other sites
IrishHeart Veteran

I received my new insurance card yesterday and I'm going in for the blood draw this afternoon. Then I am going gluten-free forever. This few weeks I have kept my gluten intake to lunch or evenings only and I have had symptoms within 1/2 hour of ingestion. There is no doubt in my mind that gluten is causing a response in my body. This morning I decided to have a piece of toast with my omelet just to add a little extra gluten for today and I got very ill, I had to figure out a second breakfast. It was the first gluten at breakfast time I have had since restricting my gluten intake. My body is obviously showing me this is the problem.

Well, after all we discussed, this does not surprise me, hon.

Sorry you feel so yucky. Good riddance to gluten, eh?

If you are positive, your doc may want to biopsy you.

Good luck and keep us posted.

You know how to reach me either way.

Link to comment
Share on other sites
roxieb73 Contributor

BIG BIG HUGS TO YOU!!!!! I had my leg biopsy today and Endoscopy on Thurs then I am doing the same! :D

Link to comment
Share on other sites
ker0pi Rookie

Well, after all we discussed, this does not surprise me, hon.

Sorry you feel so yucky. Good riddance to gluten, eh?

If you are positive, your doc may want to biopsy you.

Good luck and keep us posted.

You know how to reach me either way.

I just can't wait any longer. My body just feels wrong. Since limiting my intake of gluten, cutting out dairy (thank you) and sugar I have been having abdominal pain and cramping within 30 minutes of ingestion, not to mention the lower back burning sensation.

Link to comment
Share on other sites
ker0pi Rookie

BIG BIG HUGS TO YOU!!!!! I had my leg biopsy today and Endoscopy on Thurs then I am doing the same! :D

YEA!! Good luck to you too. I really hope this is our answer.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748

    TT24
    Newest Member
    TT24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...