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Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

ttg iga fibromylagia constipation extreme fatigue teeth enamel dying tests blood help

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#16 rcheltrvel

 
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Posted 12 March 2014 - 09:16 PM

Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.
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#17 rcheltrvel

 
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Posted 12 March 2014 - 09:23 PM

Oh yeah, I wanted to add, I went to see a Psyotrist the other day for my chronic neck pain, headaches and stiffness who is part of a large neuro surgery group at a prominent hospital here where I live. He said despite my minor two herniations and minor arthritis, he thinks all of my pain or most of it is being caused by malnutrition/vitamin deficiencies. He said he would be shocked if my endoscopy came back negative. I couldn't believe my ears. You know how many years I have gone to this doctor and that doctor for my neck? Crazy!
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#18 ravenwoodglass

 
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Posted 13 March 2014 - 03:11 AM

Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

Sorry you are suffering so much. Call your doctor's office this morning and ask to speak to a nurse about what is going on with your symptoms. Your doctor may tell you to stop the challenge. Reactions after stopping gluten even for a short time and then adding it back in can be severe and are an important part of the diagnosis process. Your doctor may even give you a diagnosis based on that reaction and your blood test results.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#19 NoGlutenCooties

 
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Posted 13 March 2014 - 05:34 AM

I spoke to this new doctor I really like's partner in his office. He was pretty old and old school, I could tell. He was going over my blood work again on the phone with me today and goes, this is very unlikely that you have Celiacs. I said why do you say that. He says, you have no history of chronic diarrhea, just a little bit here and there...LOL. 

 

Yep - this doctor is outside his realm of understanding.  I had no symptoms.  Many Celiacs are asymptomatic.  Others have symptoms but no GI symptoms.  I only requested the blood tests because Celiac runs in my family.  I was "weakly positive" - which to me is like saying you're "weakly pregnant" - my ttg iga was 13 on a scale that considered anything over 11 as positive.  My biopsy showed moderate to severe villi damage.  And the inflammation in my small intestine was visible to the naked eye.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#20 NoGlutenCooties

 
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Posted 13 March 2014 - 05:39 AM

Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in?

 

Yes.  Once your body gets used to the idea of not having to deal with gluten, it tends to react violently to being assaulted by it again.  As I mentioned above, I had no symptoms when I went gluten free (just 6 months ago).  After being gluten free for about 3 months I accidentally got glutened by a little tiny taste of what I thought was quinoa salad.  Turned out to be tabuli with bulgar wheat in it.  Within a few hours I felt like I had food poisoning.  Cold sweats, shakes, inability to get warm, inability to think.  The worst of it only lasted a couple of days but it took about 5 days to feel relatively normal again and a few weeks to really feel back to being me.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#21 rcheltrvel

 
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Posted 13 March 2014 - 07:54 AM

Thanks for the advice, I will tell my doctor and gastro about this. I actually was diagnosed by my regular doctor already with Celiacs based on all my blood tests and years of symptoms. But for my own piece of mind, I have to have this test. I have a five year old daughter and a mother with similar symptoms. I have been told so many things by so many doctors over the past 20 years that I need something concrete, you know? I know I have this sensitivity, just want to know if it is definitely Celiacs or a sensitivity. I need closure if this is what has been wrong with me all these years. It's hard to explain. I will just suffer, just glad there is somewhere I can talk about this, my family is sick and tire of hearing about it I'm sure! It's only 5 more days.


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#22 GottaSki

 
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Posted 13 March 2014 - 07:56 AM

Since my addition of gluten since I was told I had to go back on gluten for two weeks before my endoscopy, it's been horrible. I have more stomach issues now then I've ever had and my blaring headaches, chills, brain fog and extreme fatigue are worse then they have been in 20 years. Could this be simply a worse reaction by adding gluten back in? I lasted six days, I felt like I was dying. My eyes were burning and black and red underneath with swelling, I looked like death. My husband is traveling and I couldn't take care of our five year old. Two days ago I needed a break, I went off gluten again. I just couldn't take it anymore. Besides a massive headache when I woke this morning (I get neck headaches due to two slight herniated disks in my neck and slight arthritis), I felt better today with more energy and more clear then I ever had. I ate gluten free all day again today, I never felt so FREE! Tomorrow it all comes to an end, my husband yelled at me and told me I better listen to the doctor and eat my gluten. I have cried so many times today that I have to start ingesting again. Now being off gluten twice in the past few weeks and going back on has convinced me gluten is 100% poisin to me. No matter what my test results may be, there is in no way, shape or form I will ever be ingesting gluten ever again. 6 more days of gluten and then the rest of my life can begin! I live in NY and the thought of a NY bagel used to get me so excited. Today the thought of it makes me ill. That is so crazy because bagels were my favorite foods in the world. So tomorrow, wish me luck, what should I eat? I can't wait till my husbands home so I can roll up in a ball and wait out the rest of my time.

 

Good Morning Rachel!

 

I'm not surprised at the strong reaction you've had.  My first week gluten-free there was still a small part of me that was doubtful that we had finally found what the cause of a lifetime of symptoms was...well the very first time I ate at a restaurant after diagnosis...I had my very first glutening...there is a particular type of brain fog that I get about 45 minutes after glutening....and that was after ordering a gluten-free pizza...that experience removed the tiny bit of doubt I had remaining and the next day I received my biopsy results...total villious atrophy in all samples.

 

I agree with Ravenwood...call your doctor today...they may recommend you stop the challenge.  If they do not....wait until evening to eat just one half of that bagel...save the other half for tomorrow night...then pick up a donut or a slice over the next few days...but there is no need to eat more than one slice of bread's worth of gluten over the next five days.  AND...you don't need any gluten the day of your endoscopy...so that date will be your official first day gluten-free :)

 

Crazy what a difference a week can make...huh?

 

Oh....I think I told you but just in case...ask for written copies of both procedural and pathology report and have hubs or whomever is there with you ask the doctor what he saw....often the description right after the procedure is easier to understand and can provide more detail than the procedural report.

 

Hang in there  :wub:


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#23 rcheltrvel

 
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Posted 13 March 2014 - 08:00 AM

Thank you Lisa, will do. Our stories sound so similar. Were you diagnosed with Fibromylagia after your Celiac confirmation?


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#24 rcheltrvel

 
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Posted 13 March 2014 - 08:03 AM

I think I will pick one little piece of my favorite food for each day. If I am going down, it's going to taste good!!! 


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#25 GottaSki

 
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Posted 13 March 2014 - 10:15 AM

Thank you Lisa, will do. Our stories sound so similar. Were you diagnosed with Fibromylagia after your Celiac confirmation?

 

Yes...I had all the symptoms of "Fibromyalgia" for about 20 years that got progressively worse and would come and go -- "flares" were common and became more frequent with higher levels of pain.  When I removed gluten, my digestive symptoms improved a great deal during the first weeks/months, but my fibro symptoms remained -- whether they were worse or simply that they were more pronounced because other parts of me were feeling good for the first time in my life I'll never know.  Was finally diagnosed about seven months after Celiac diagnosis -- trialed meds and as usual for me the medication side effects made it impossible for me to take them and were not improving my fibro symptoms anyway.

 

While we may have similar stories -- I am hopeful that you will improve quickly -- even the fibromyalgia symptoms!  None of us are exactly the same although many of us that went undiagnosed for long periods do take longer to heal.

 

The best advice I can offer is when you remove gluten -- eat primarily whole foods, avoiding processed items for the first weeks/months gluten-free -- even items labeled gluten-free can be tough on our damaged systems -- eat processed items as treats if you are really missing something -- just limit them to treats rather than staples.

 

If your taking orders...I'll have one half of an everything bagel ;) 

 

Oh...not sure I mentioned...sometimes the last days of challenge are made a bit easier if you consume the gluten item at the end of the day so the symptoms are slightly contained to sleeping hours.  Doesn't always work, but has for some.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#26 rcheltrvel

 
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Posted 13 March 2014 - 11:22 AM

Thanks. I will try eating it only at night, I am going to try tonight. But I have this horrible neck issue that is worst upon waking and I am starting to suspect that my old late night gluten/carb snacks could be making me much worse in the morning, I will try it once and if it's not good, I will try for lunch only. This way I can maybe get some work done in the morning and maybe it will tapper off by night. But who are we kidding, it will probably not matter that much. I will have a half for you tomorrow Lisa, today I am taking my 5 year old out for pasta. Thanks for the advise about keeping the processed non-gluten foods to a min. I think when I went off for the first five days, I was eating so many non-gluten carbs that my stomach wasn't so happy. I will try to stick to whole foods as much as possible. Last night all I wanted was a huge hamburger. Red meat, that is all I wanted and I feel like that again today. My doctor is testing me now for low iron, I wonder if that could be why I am having this huge craving. Did you ever have low iron?


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#27 1desperateladysaved

 
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Posted 13 March 2014 - 05:53 PM

I feel like I should yell surprise!  I felt many of the same feelings in my diagnosis.  I enjoyed baking and thought that bread was the ultimate healthy food.  Now I loath it.  I am hoping your challenge will be over soon and you will have a definitive result.

 

D


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#28 GottaSki

 
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Posted 13 March 2014 - 06:05 PM

Thanks. I will try eating it only at night, I am going to try tonight. But I have this horrible neck issue that is worst upon waking and I am starting to suspect that my old late night gluten/carb snacks could be making me much worse in the morning, I will try it once and if it's not good, I will try for lunch only. This way I can maybe get some work done in the morning and maybe it will tapper off by night. But who are we kidding, it will probably not matter that much. I will have a half for you tomorrow Lisa, today I am taking my 5 year old out for pasta. Thanks for the advise about keeping the processed non-gluten foods to a min. I think when I went off for the first five days, I was eating so many non-gluten carbs that my stomach wasn't so happy. I will try to stick to whole foods as much as possible. Last night all I wanted was a huge hamburger. Red meat, that is all I wanted and I feel like that again today. My doctor is testing me now for low iron, I wonder if that could be why I am having this huge craving. Did you ever have low iron?

 

Yes...I was anemic most of my adult life.  At diagnosis...I was low in all Bs, D, K, Iron and more...took some time but they steadily improved after removing gluten...and were in the upper third of normal at 18 months gluten-free :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#29 rcheltrvel

 
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Posted 17 March 2014 - 01:37 PM

Well, tomorrow I get my endoscope. Finally. I can't believe I'm saying this but I pray I am Celiac and can finally put closure to my search for answers. Yes, I feel like dying today, but I got to binge on Girl Scout cookies today! For my last time ever, no matter the outcome. I did discover on this gluten challenge that when I eat gluten at night, I wake in the middle of the night and in the morning with severe neck stiffness ands in and swollen, black eyes. I can't eat gluten in the morning because then I can't work. So I do it mid afternoon and just suffer but at least it's not as bad. Today I received some new blood tests back from my Gastro, I may have some low iron going on from what I can tell but you tell me...

Total Iron = 119
Iron TIBC = 495
Transferren Saturation = 24
Ferritan = 13 (range is 12-300)

Not sure of the other ranges as I don't have the tests in front of me.
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#30 GottaSki

 
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Posted 17 March 2014 - 01:41 PM

Good Luck tomorrow!

 

I hope you have a nice little nap ;)

 

Let us know how it goes :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)






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