Desperate need of help

[PK-432]

Hello. Dear Members.  I am new to this forum. 

I am in 20's.

I had cholecystectomy in 2012 since then I am having stomach pain and diarrhea. 

I had celiac panel in 2016 which were negative but positive on gene test.

Presently, I am diagnosed with hypertrophy of facet joints and ligaments which cause me severe bone and joints pain. I have migraine since age of 14 years. Since start of 2018 I am having  migraine on daily basis. I have diarrhea 3-4 times with foul smell,  nausea, Lower abdomen pain with cramps that radiates to lower area.Stomach is bloated from lower abdomen area. I am also diagnosed with  ketrosis pilaris (chicken skin ) in 2016. My neutrophils is low,which is 36 and normal limit is 40 -70. My monocytes is 12.6 whereas normal limit is 10,which means it is high. I also have tingling in hands and feet. I have lost 05 kg weight.  I am having memory loss problem of short term memory. I also have canker sores in mouth since 14 days. I also had candida species yeast infection on repeat basis due to excessive use of steriods due to misdiagnosis of ulcerative colitis. I have also taken antibiotics every month to control diarrhea and severe stomach pain but no vain. I am also low in immunity due to premature birth. I have short breathing problem since one month. I have extreme fatigue all the time. 

Present value of TTG-IGA is 1.15 and TTG-IGG is 9.85. According to lab standards : less than 12: negative, 12-18: equivocal and greater than 18: Positive.  

But according to international standards of TTG-IGG I AM POSITIVE. So,my query is that do I have celiac disease?

Thanks a lot for your time to read such long post. Sorry for it. Thanks in advance for reply which means a lot to me. 

Regards 

 

 

Edited June 10, 2018 by Tayyaba
Forgot to add some details

[tessa25]

1 hour ago, Tayyaba said:

Present value of TTG-IGA is 1.15 and TTG-IGG is 9.85. According to lab standards : less than 12: negative, 12-18: equivocal and greater than 18: Positive.  

But according to international standards of TTG-IGG I AM POSITIVE. Kindly see REFERENCE VALUE mentioned in this article.  

Each lab has their own tests. So the reference ranges for Mayo are unrelated to the ranges for your lab.

[PK-432]

3 minutes ago, tessa25 said:

Each lab has their own tests. So the reference ranges for Mayo are unrelated to the ranges for your lab.

Ok then it means I am not celiac.  Isn't it? 

[PK-432]

2 hours ago, Tayyaba said:

Ok then it means I am not celiac.  Isn't it? 

My nephew is also diagnosed with  celiac disease as this disease is genetic.  I am in this painful condition since 06 years. Kindly help me out to find right solution. I will later share my previous levels of TTG-IGA and TTG-IGG to show comparison in my levels.

[Ennis-TX]

11 minutes ago, Tayyaba said:

My nephew is also diagnosed with  celiac disease as this disease is genetic.  I am in this painful condition since 06 years. Kindly help me out to find right solution. I will later share my previous levels of TTG-IGA and TTG-IGG to show comparison in my levels.

Some people test negative on the blood test, but have the damage show up on intestinal biopsy. You have to be eating gluten daily for both test. So were you eating gluten daily prior to the blood test?

Other things to consider even if all your test come back negative you could be Non Celiac Gluten Sensitive and just have to trial the gluten free diet and see if you improve.

[tessa25]

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

I believeyou are missinf some blood tests.

 

 

[PK-432]

1 hour ago, Ennis_TX said:

Some people test negative on the blood test, but have the damage show up on intestinal biopsy. You have to be eating gluten daily for both test. So were you eating gluten daily prior to the blood test?

Other things to consider even if all your test come back negative you could be Non Celiac Gluten Sensitive and just have to trial the gluten free diet and see if you improve.

Thanks for your concern.  It means a lot to me.  I am on gluten diet.  I had endoscopy in 2016 which was negative for celiac disease but at that time I was on gluten free diet. I went gluten free for 2 times 06 months each time,but Dr's always discourage me and due to serious issue of cross contamination I am on gluten diet since one year. Now I will go on gluten free diet after official diagnosis. I am seriously sick of my condition. I also have chapped lips. I also had ischemic stroke in 2014 which had affected my emotional part of brain of left side. 

[PK-432]

29 minutes ago, tessa25 said:

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

I believeyou are missinf some blood tests.

 

 

I had blood tests all except DGP IGA and DGP IGG in 2016, March 2018 and June 2018 because I am losing weight since April 2018. I am thinking to go for DGP IGA and DGP IGG. Thanks for your concern.  It means a lot to me.  

[squirmingitch]

I think it's really important for you to get the DGP tests. Some people only test positive on those. We have one member in particular who only ever tests positive on the DGP's.

Since you were eating gluten free in 2016 when you had the endoscopy, then it would be invalid as to determining if you have celiac disease or not.

It is telling that your nephew has celiac & yes, you're right, it's genetic. 

If you get the DGP tests & they are negative & get an endoscopy & that is negative then do give the gluten free diet a nice long, serious try. I think you already know that. Make sure you don't get cross contaminated. 

[PK-432]

9 hours ago, squirmingitch said:

I think it's really important for you to get the DGP tests. Some people only test positive on those. We have one member in particular who only ever tests positive on the DGP's.

Since you were eating gluten free in 2016 when you had the endoscopy, then it would be invalid as to determining if you have celiac disease or not.

It is telling that your nephew has celiac & yes, you're right, it's genetic. 

If you get the DGP tests & they are negative & get an endoscopy & that is negative then do give the gluten free diet a nice long, serious try. I think you already know that. Make sure you don't get cross contaminated. 

Thanks a lot for your concern.  Your suggestions are really valuable.  I am reading about celiac and other gluten related health issues since 2015 and also about  gluten free diet.  Yes I know properly about celiac and NCGS. 

[PK-432]

1 hour ago, Tayyaba said:

Thanks a lot for your concern.  Your suggestions are really valuable.  I am reading about celiac and other gluten related health issues since 2015 and also about  gluten free diet.  Yes I know properly about celiac and NCGS. 

Here are my levels of TTG-IGA and TTG-IGG when I was on gluten diet in 2016: 

TTG-IGA : Less than 0.2

TTG-IGG : 3.6

Result of March 2018:when I was on gluten diet 

TTG-IGA: 2.0

TTG-IGG: 2.8

Latest  Result June 2018:still on gluten diet since one year. 

TTG-IGA: 1.15

TTG-IGG: 9.85

My query is that why there is too much variations in my results?

Does it mean that I have celiac disease? 

Thanks in advance  for your reply.  

Regards 

 

[cyclinglady]

2 hours ago, Tayyaba said:

Here are my levels of TTG-IGA and TTG-IGG when I was on gluten diet in 2016: 

TTG-IGA : Less than 0.2

TTG-IGG : 3.6

Result of March 2018:when I was on gluten diet 

TTG-IGA: 2.0

TTG-IGG: 2.8

Latest  Result June 2018:still on gluten diet since one year. 

TTG-IGA: 1.15

TTG-IGG: 9.85

My query is that why there is too much variations in my results?

Does it mean that I have celiac disease? 

Thanks in advance  for your reply.  

Regards 

 

I can tell you that I am biopsy proven and I have never had a positive on the TTG or EMA test versions.  Not even in the many times my GI has run them for follow-up testing.   I have only had a positive on the DGP IgA.  Some celiacs are seronegative.  In that case, the GI must just proceed to biopsy to confirm a diagnosis.  

We are not doctors,  we can not diagnose you over the Internet.  If you can not get the rest of the panel, consider trialing the diet.  

I have celiac disease. I thought for sure my little niece had it too.  All testing was negative, even her biopsies for celiac disease.  Turns out she has Crohn’s.  Just something to think about.  

[PK-432]

1 hour ago, cyclinglady said:

I can tell you that I am biopsy proven and I have never had a positive on the TTG or EMA test versions.  Not even in the many times my GI has run them for follow-up testing.   I have only had a positive on the DGP IgA.  Some celiacs are seronegative.  In that case, the GI must just proceed to biopsy to confirm a diagnosis.  

We are not doctors,  we can not diagnose you over the Internet.  If you can not get the rest of the panel, consider trialing the diet.  

I have celiac disease. I thought for sure my little niece had it too.  All testing was negative, even her biopsies for celiac disease.  Turns out she has Crohn’s.  Just something to think about.  

Thanks a lot for your concern. My antibodies are highly positive for Chrons disease and due to positive gene test of celiac disease  my gastroentrologist went for endoscopy and colonoscopy.  But both biopsies came negative for celiac disease and chrons disease in 2016.

[GFinDC]

Hi Tayyaba,

One thing that helps some people with joint pain is to stop eating nightshades vegetables.  Soy can be a problem too.  Nightshades are tomatoes, peppers, eggplant, and potatoes.  They contain an alkaline that our livers don't process well.  So the alkaloids can build up and cause problems, like joint pain.

So, it's something to try eliminating from your diet for a couple months to see if it helps.  I know my joint pains got much better after eliminating nightshades.

[PK-432]

59 minutes ago, GFinDC said:

Hi Tayyaba,

One thing that helps some people with joint pain is to stop eating nightshades vegetables.  Soy can be a problem too.  Nightshades are tomatoes, peppers, eggplant, and potatoes.  They contain an alkaline that our livers don't process well.  So the alkaloids can build up and cause problems, like joint pain.

So, it's something to try eliminating from your diet for a couple months to see if it helps.  I know my joint pains got much better after eliminating nightshades.

 

1 hour ago, GFinDC said:

Hi Tayyaba,

One thing that helps some people with joint pain is to stop eating nightshades vegetables.  Soy can be a problem too.  Nightshades are tomatoes, peppers, eggplant, and potatoes.  They contain an alkaline that our livers don't process well.  So the alkaloids can build up and cause problems, like joint pain.

So, it's something to try eliminating from your diet for a couple months to see if it helps.  I know my joint pains got much better after eliminating nightshades.

Thanks a lot for such a valuable information. It means a lot to me.  I will read about it and I am also thinking to give it a try. 

I have one suggestion if is acceptable : If I am not wrong that posts are public in group which should be not because most of us do not to tell to our extended family about celiac disease, NCGS and even gluten free diet. 

[cyclinglady]

2 hours ago, Tayyaba said:

Thanks a lot for your concern. My antibodies are highly positive for Chrons disease and due to positive gene test of celiac disease  my gastroentrologist went for endoscopy and colonoscopy.  But both biopsies came negative for celiac disease and chrons disease in 2016.

Okay. I will share that my niece who has Crohn’s was finally diagnosed with a pill camera.  Her damaged areas were out of reach of both scopes.  I would consider the Gluten Free diet and maybe even the autoimmune protocol diet for the possible Crohn’s.  Here is a recent study which caused over 70% of patients to go into remission.  

Open Original Shared Link

 

[cyclinglady]

24 minutes ago, Tayyaba said:

 

Thanks a lot for such a valuable information. It means a lot to me.  I will read about it and I am also thinking to give it a try. 

I have one suggestion if is acceptable : If I am not wrong that posts are public in group which should be not because most of us do not to tell to our extended family about celiac disease, NCGS and even gluten free diet. 

This is a public site and not a closed group.  Most members do not use their real names or disclose where they live.  You can choose to participate or not. 

 

[Ennis-TX]

21 minutes ago, Tayyaba said:

 

Thanks a lot for such a valuable information. It means a lot to me.  I will read about it and I am also thinking to give it a try. 

I have one suggestion if is acceptable : If I am not wrong that posts are public in group which should be not because most of us do not to tell to our extended family about celiac disease, NCGS and even gluten free diet. 

Yes it is public, if you wish to contact someone about something more personal click on their profile and private message them, in which case it will only be between you and them.

All other threads and post are public to help others with similar issues. My suggestion is not to give you real name or information. Change your name here to something unrelated, and set your location to somewhere else, a moderator might be able to help you. This way you can talk about your issues with a alias that normal members will not be able to identify and you family will not be able to prove it is you unless you tell them.

 

[PK-432]

9 minutes ago, Ennis_TX said:

Yes it is public, if you wish to contact someone about something more personal click on their profile and private message them, in which case it will only be between you and them.

All other threads and post are public to help others with similar issues. My suggestion is not to give you real name or information. Change your name here to something unrelated, and set your location to somewhere else, a moderator might be able to help you. This way you can talk about your issues with a alias that normal members will not be able to identify and you family will not be able to prove it is you unless you tell them.

 

Thanks a lot for your suggestion.  I will change name and also made changes in my post. 

13 minutes ago, cyclinglady said:

This is a public site and not a closed group.  Most members do not use their real names or disclose where they live.  You can choose to participate or not. 

 

Thanks for information.  I love to remain and participate in forum. 

[PK-432]

18 minutes ago, cyclinglady said:

Okay. I will share that my niece who has Crohn’s was finally diagnosed with a pill camera.  Her damaged areas were out of reach of both scopes.  I would consider the Gluten Free diet and maybe even the autoimmune protocol diet for the possible Crohn’s.  Here is a recent study which caused over 70% of patients to go into remission.  

Open Original Shared Link

 

Thanks a lot for sharing such valuable information. I will definitely read this article. 

[Patricia Crowell]

Unless you have a stool sample which indicates infection, I would not continue to stay on antibotics which can mess with your intestinal flora.  This can cause another condition which is more serious called C-diff. One of my symptoms was severe diarrhea for a long period of time.

[PK-432]

14 hours ago, Patricia Crowell said:

Unless you have a stool sample which indicates infection, I would not continue to stay on antibotics which can mess with your intestinal flora.  This can cause another condition which is more serious called C-diff. One of my symptoms was severe diarrhea for a long period of time.

Yes. I agree with you. Can you please name of that test because may be i am done with that test?

I am really thankful for your concern.  It means a lot to me. 

[PK-432]

DGP IGA and DGP IGG is not available at my country. Should I go for AGA-IGA and AGA-IGG, which is available? 

Thanks in advance for reply and suggestions. It means a lot to me.