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Testing Question


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#1 ker0pi

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Posted 05 June 2012 - 02:53 PM

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
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#2 IrishHeart

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Posted 05 June 2012 - 03:44 PM

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!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"LTES"  Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 MitziG

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Posted 05 June 2012 - 05:52 PM

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

And yes, you have a bang up doctor!
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#4 ker0pi

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Posted 06 June 2012 - 11:36 AM

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!
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#5 beachbirdie

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Posted 06 June 2012 - 12:27 PM

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.

Bio-nature 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.

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

Tinkyada rice pastas are awesome.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#6 IrishHeart

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Posted 06 June 2012 - 12:33 PM

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.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"LTES"  Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 ker0pi

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Posted 06 June 2012 - 02:06 PM

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.

Bio-nature 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.

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

Tinkyada 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!!
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#8 ker0pi

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Posted 06 June 2012 - 02:19 PM

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?
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#9 IrishHeart

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Posted 06 June 2012 - 02:56 PM

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.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"LTES"  Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#10 ker0pi

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Posted 06 June 2012 - 06:08 PM

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.
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#11 IrishHeart

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Posted 07 June 2012 - 05:46 AM

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.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"LTES"  Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 ker0pi

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Posted 07 June 2012 - 08:19 AM

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.
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#13 ker0pi

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Posted 07 June 2012 - 08:51 AM

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.
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#14 roxieb73

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Posted 07 June 2012 - 11:50 AM

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.
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#15 ker0pi

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Posted 07 June 2012 - 12:13 PM

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.
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