Confused & Need Your Help Please

[MelissaMP]

Hi all,

I am pretty lost and at a dead end - and am looking to you guys see if you might be able to catch something that doctor's cannot. See below for my most alarming symptoms. With just these results by themselves, many different types of doctors (includes endo, derm) have told me that these test results alone do not mean anything. I don't believe that. Can you help me? (PS - I got a celiac panel blood test, and the only one that came back high was Antigliadin IgG (native)

HIGH

Antigliadin IgG (native) 38 units

LP[a]-C 37.4 mg/dL

EBNA Ab/IgG >8.0

EBV CAPSID Ag.Ab/IgG >8.0

Histamine Determination, Blood 133ng/mL

ANA SCREEN Positive

ANA TITER (IFA) 1:640 HI (homogeneous)

 

LOW

RDW 11.9

Zinc 53 ug/dL

Serotonin 10 ng/mL

 

Thank you in advance <3 

[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.

Since you have a high on the old AGA  IGG test you should get a gastroenterologist to do the endoscopy/biopsies for celiac.

 

[cyclinglady]

You mean that with all these lab results, no doctor has been able to pinpoint a diagnosis?  

[MelissaMP]

11 hours 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.

Since you have a high on the old AGA  IGG test you should get a gastroenterologist to do the endoscopy/biopsies for celiac.

 

Thanks tessa25. It looks like I did get the full Celiac Disease Comprehensive (see attached), but the only thing that came back high was the Antigliadin IgG (native). I have been to a few gastroenterologists that have told me just having that one test high, but the rest normal does not directly prove there is anything wrong. Thanks for your help.

[MelissaMP]

11 hours ago, cyclinglady said:

You mean that with all these lab results, no doctor has been able to pinpoint a diagnosis?  

Hi cyclinglady, No ? every doctor I have been to has not been able to find anything.

[tessa25]

1 hour ago, MelissaMP said:

 

Nevermind

[cyclinglady]

Wow!  You have a positive ANA and an elevated histamine level (what was the range).  Was lupus or other autoimmune ruled out?    You could have celiac disease or sensitivity.   You would have to have an endoscopy.  You did not mention your symptoms, but I assume you have GI issues or are anemic unless you have a relative who has celiac disease.  

My niece flunked the celiac blood panel.  Her 4th GI ordered a pill camera.  It caught Crohn’s located beyond the reach of both scopes.  Why share this?  She kep advocating for her health and so should you.  

Take care.  

[MelissaMP]

2 hours ago, cyclinglady said:

Wow!  You have a positive ANA and an elevated histamine level (what was the range).  Was lupus or other autoimmune ruled out?    You could have celiac disease or sensitivity.   You would have to have an endoscopy.  You did not mention your symptoms, but I assume you have GI issues or are anemic unless you have a relative who has celiac disease.  

My niece flunked the celiac blood panel.  Her 4th GI ordered a pill camera.  It caught Crohn’s located beyond the reach of both scopes.  Why share this?  She kep advocating for her health and so should you.  

Take care.  

Hi cyclinglady, Thank you for taking the time to tell me about your nieces story - I am sorry she has that, but am glad she continued to advocate for her health to find out what was wrong!

My histamine level is 133 ng/mL (range: 12-127 ng/mL). I have not been tested for any autoimmune diseases. Some of my other symptoms include: tired all the time, occasional upper stomach tightness or pain (below ribs) and nausea, occasional red itchy bumps on inner arms at night.

Thanks for all your help! 

 

[Posterboy]

20 hours ago, MelissaMP said:

With just these results by themselves, many different types of doctors (includes endo, derm) have told me that these test results alone do not mean anything. I don't believe that. Can you help me?

MelissaMP,

See this medicinenet article link that covers elevated ANA levels very well.

Open Original Shared Link

Of the many things on this list of organs/body part that can elevate ANA levels in the GI tract as cyclinglady has already noted is Chrons.

I study a lot about GI problems having first been IBS, then NCGS (Celiac by blood serology) and I believe Pellagra undiagnosed or at least a 2ndary condition to my Celiac/NCGS disease diagnosis.

Because  Niacin can become low in Celiac's many of will have the symptom's of Pellagra among other disease's 2ndary to our NCGS or proper Celiac diagnosis.

Here is good link that establishes associated conditions in Celiac patient due to Vitamin Deficiencies as listed in the article.

Open Original Shared Link

These include but not limited toooo . ..scurvy (Low Vitamin C), Ricketts (Low Vitamin D), Beri Beri (Low B1), Nightblindess (Vitamin A) and last but not least Pellagra (Low Vitamin B3 levels).

Not to mention Low Iron aka Anemia or (IDA), Perncious Anemia (Low B-12) etc.

Mainly because I had a lot wrong with me. I have studied these Vitamin deficiencies and others and I have take all these in turn.  . . .

And to try and help those still suffering.

And yet I find I still am finding more and more things that I didn't know.

Recently someone asked about Chron's .. . so that set me off in that direction.

To see if I could help the next person in line.

I did not receive a Chron's diagnosis personally mind you because my ANA levels were not elevated but I believe I could of had .... if the doctor's were lead to look  in that direction.  I also believe I could of received a Pellagra diagnosis if the dotor's knew  too look for it.

Having said that MelissaMP I recently came across research that for me confirms this hunch.

It is only a hunch.  It is not medical advice.  Always check with your doctor's before making medical decision.

But the great thing about a Vitamin deficiency (if it is one) for lack of a better word. ... you can treat yourself with Vitamins.

Great! What does that have to do with my elevated ANA levels or possible Chron's you ask?

Welll this new to me research ( and I study alot remember) is already 4 years old which means for most clinical doctor's practices it takes 17 years (a generation) of new doctor's to have been trained on this relatively new research.

I wrote a celiac.com blog post about this topic that might help you (go back and read it later).

So here is the new(er) research that shows Niacin supplementation in Chrons' or (Potential) Chrons' Patients my words).  . . .since we we want to stop it before it becomes full blown Chron's right.

We want to be ahead of the Learning) curve not 20 years behind it right?

Here are the links (and then I will try and summarize)

Open Original Shared Link

Open Original Shared Link

Both these articles summarize the same findings but take different tacks/approaches on how they interrupt the results.

One sees Fiber as the answer and the other sees Vitamins (they say megadoses) as the answer.

But it turn out int the absence of Fiber which would normally trigger inflammation (and high ANA levels) Niacin down regulates (turns off) the inflammation markers in the Colon.

You kind of need a key to read this research.  So I will give you the cliff notes version.

Gpr109a receptor is where Niacin interacts with the colon to turn off inflammation.

Fiber turns into  Short chain fatty acid SCFA's  aka (Butyrate in these articles)  with help from bacteria in the colon.

With that said  here is an extract from the US medicine article because it is slightly less technical.

quoting their findings.  I will put in ( ) what I have added for clarity.

"Results indicate that activation of the (Niacin) receptor Gpr109a in the colon by butyrate, a short chain fatty acid (SCFAs) derived from the microbial fermentation of dietary fibers in the colon, prompts immune cells to suppress rather than promote inflammation, a factor in Crohn’s disease and ulcerative colitis, as well as colorectal cancer.

Butyrate (aka SFCAs) also prompts epithelial cells that line the colon to produce cytokines, which aid wound-healing, a critical step for resolving the intestinal inflammation that occurs in inflammatory bowel disease (IBD) (commonly known as IBS), according to Ganapathy.

“To protect your colon, you need this (Niacin) receptor (and Niacin to bind too it), as well as the fiber and butyrate which activate it,” Ganapathy said.

 “We think megadoses of niacin may be useful in the treatment and/or prevention of ulcerative colitis, Crohn’s disease, (elevated ANA levels) and colorectal cancer as well." . . ..

It is me again. If the elevated ANA levels is from being low in Niacin (taking Niacin(amide) is the form I recommend because it does not flush people) can/will help your Color inflammation.  Then you need to try taking some Niacin(amide) to see if your ANA don't go down in 6 months.

If I read this new(er) research right.  . . lets hope it doesn't take a (another) generation for the doctor's to realize this in a clinical setting.

If Niacinamide is not easily available where you are at . . . this form can be hard(er) to find.

Then taking a B-complex should work as well.

As noted above you are probably also low in B-12, B-1 etc. and probably don't know it if you have not received an "official" diagnosis from being low in these B-Vitamins which often is hard to confirm since taking them (B-Vitamin's) helps your inflammation/disease/GI problems etc. or Pernicious Anemia symptom's etc. . .then without a prior diagnosis of Chron's you can't prove taking Niacin helped your ANA levels.  But it seems plausible to me based on this new(er) research.

see this article talks about B-Vitamin status in Celiac's.

And these are only the one's that we have confirmed from this study. 

Remember the early article listed in addition from the above study on B-Vitamins being low in Celics to B-6, B-12, Folic Acid but also B-1 and B3 and probably B-2 as well.

So taking a B-complex works well.

By megadoses they many many times the RDA but this is not necessary/needed to accomplish a B-Vitamin sufficiency level.

Frequency is much more important.

A B-50 3/day will help someone 3x as fast as a B-100 complex once a day.

Because taken 3/day with meals the B-Vitamins being water soluble will stay in the body 3x as long (all day) doing good ALL day.  Instead of only once a day.

You won't do this forever.  This will be a cycle.  it might be 3 months for you and 6 months for others.

But usually your liver can store up to  3 to 4 months reserve of B-Vitamins in general.

I wrote this blog post about how too take B-Vitamins if you want to read it more in depth later. 

It is written specifically about how and why you would want to take Naicin(amide) (Non-flushing form) over the Niacin (flushing) form but it is generally true about B-Vitamins as a rule.

Frequency is the rule not the amount!

I hope this is helpful.  I must stop for now!

this is not medical advice I only know it helped me with my low stomach being diagnosed as first IBS, then NCGS (Celiac with blood work only).

I wrote a celiac.com posterboy blog post about that too if you have time and want to read it.

But you don't need to read it (or any of the blog posts to) take a Vitamin as long as you know how frequency helps you more than the amount and which one can help you manage your (Colon possible Chrons') inflammation according this new(er) research.

I wrote them originally so I wouldn't have to write these long post/thread replies but since their is always new(er) research I am still finding out and everybody's circumstance is different I usually go longer than I want/need toooo often.

But I try to answer every thread question as if I don't get back to answer your question again (in more detail). . .you will have enough information to turn in the right direction (even if if is the not the direction) you are traveling now.

To quote a friend.   "It is not a long way back .. . if you know the way".

*** this/these opinion(s) are my own and do not reflect an endorsement by celiac.com of these ideas, comments, thoughts or opinions.

I hope this helps! You the way it did me!

Good luck on your continued journey,

Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen.

As always "Consider what I say; and the Lord give thee understanding in all things." 2 Timothy 2:7

Posterboy by the Grace of God,