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Pooh bear Newbie
Pooh bear
Posted

Over a year ago I had a celiac panel 10....

IgA 168

Endomysial Screen Negative

tTG Ab, IgA 5.5

Gliadin Reptide Ab, IgG 26.5

Gliadin Reptide Ab, IgA 425.0

tTG Ab, IgG 12.8

My question is what does this mean? I had this bloodwork done with a Natural Health Nurse Practioner. She said I have celiac, but my primary doctor said not to worry about it. Can someone please interpret my bloodwork and tell me what to do. I am 52 years old and have gained 100 lbs in 15 years, pain, deal with anxiety/depression and have PTSS from childhood abuse.  Do I blame the anxiety/depression, pain and weight on gluten? I have tried cutting most gluten out, but sometimes it is hard when eating out. About 5 years ago I had an endoscopy and a colonoscopy done because I was having a lot digestive problems, but they said they didn't test me for celiac or look for any type damage from gluten. They said it was IBS. Please help.

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RMJ Mentor
RMJ
Posted

Do you have the lab ranges for the tests?  It is difficult to say much without those, but it is very likely that the gliadin peptide IgA is positive.  Some of the others might be also.  If I were you, I would get a copy of the complete results, make an appointment with a gastroenterologist, and get a new primary doctor.

 

cyclinglady Grand Master
cyclinglady
Posted

Over a year ago I had a celiac panel 10....

IgA 168

Endomysial Screen Negative

tTG Ab, IgA 5.5

Gliadin Reptide Ab, IgG 26.5

Gliadin Reptide Ab, IgA 425.0

tTG Ab, IgG 12.8

My question is what does this mean? I had this bloodwork done with a Natural Health Nurse Practioner. She said I have celiac, but my primary doctor said not to worry about it. Can someone please interpret my bloodwork and tell me what to do. I am 52 years old and have gained 100 lbs in 15 years, pain, deal with anxiety/depression and have PTSS from childhood abuse.  Do I blame the anxiety/depression, pain and weight on gluten? I have tried cutting most gluten out, but sometimes it is hard when eating out. About 5 years ago I had an endoscopy and a colonoscopy done because I was having a lot digestive problems, but they said they didn't test me for celiac or look for any type damage from gluten. They said it was IBS. Please help.

Ugh!  What can I say?  That your doctor is an idiot?  He is grossly wrong!  You did not post any lab ranges (labs vary) but it looks like you have celiac disease.  I could confirm for sure if you provide the ranges.  But, a result of over 400 has got to be positive!  It looks like your TTg tests are low and maybe your doctor relies on just the TTg which are typically used for screening.  (If doctor could only pick one they would pick the TTG because it normally catches up to 95% of celiacs.  BUT NOT ME!  I had results like yours.  My  TTGS tests were negative yet I had a Marsh stage IIIB per my biopsy report.  That is moderate to severe damage.  

There are over 300 symptoms of celiac disease and anxiety and depression are some of them.  Weight has no issue either.  Not everyone is skinny!  IBS is really code for "I be stumped."  

So, my advice.  Post the lab ranges.  Find another doctor for another opinion or if you choose, you can go completely gluten free.  Not a little, but completely.  Read ourselve Newbie 101 section under the "Coping" section to help guide you.  You can improve your health!  

Pooh bear Newbie
Pooh bear
Posted
  • Author

Reference range is...

<20 Negative

20-25 Equivocal

>25 Positive

Is this what you were asking about?

 

cyclinglady Grand Master
cyclinglady
Posted

Yes!  You have two positives (26 & 425).   You should be referred to a GI doctor that is standard procedure.  Gives you a baseline for damage.    But that is not always possible (cost, long wait times).  So, you can chose to go gluten free or go in for the final test (keep eating gluten until all testing is complete.). 

Like you, my TTG results were negative yet I had moderate to severe intestinal damage.   

Things can only get better!  ?

nvsmom Community Regular
nvsmom
Posted

I agree. the deaminated gliadin peptide tests are the newest tests.  The DGP IgG is 99-100% specific to celiac disease. There is almost no chance of a positive being caused by something other than celiac disease. The DGP IgA is "only"  93-96% specific to celiac disease.  See the Diagnosis Guidelines here: Open Original Shared Link

If you are having an endoscopic biopsy done, don't go gluten-free yet.

Oh! if you have immediate family you should advise them to be tested and to retest every couple of years.  Their chances of having celiac disease can be as high as 1 in 10, or down to 1 in 22.

It's quite common for a celiac to only be positive in one or two tests. Unfortunately, you fit in quite well around here.  ;)  I hope you feel better on the gluten-free diet.

Pooh bear Newbie
Pooh bear
Posted
  • Author

My GI appt. is not until Nov. 20 just to meet with the Doctor. Should I go gluten free, then gluten two weeks before I am seen by the GI?

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cyclinglady Grand Master
cyclinglady
Posted

Since that last celiac blood panel was taken a year ago, I bet your new GI is going to want to run the panel again even before scheduling an endoscopy.  So, I would probably advise you to continue to eat gluten daily.  I know you want to feel better, but you are so close to getting a correct diagnosis finally!    The blood test requires 8 to 12 weeks and the endoscopy requires 2 to 4 weeks.    Perhaps, you can call the new GI and talk to the front desk.  Ask if you can have a celiac blood panel run now while you are eating gluten (you many even want to provide a copy of the test you took a year ago and drop it off so the doctor can review and order a celiac blood panel based on facts and not just your word).  Ask how long of a wait it would be if the doctor orders an endoscopy.  It might just be a week or so!  

Hang in there!  

Pooh bear Newbie
Pooh bear
Posted
  • Author

Will being on Gluten this much longer cause too much damage? Also, what can I do to keep from feeling so bad? Is there a GI specialist on Celiac in the Wilmington, NC area? This is the same group i went to before, different doctor.  I am so sorry for all the questions, but I am do tired of hurting and dealing with anxiety/depression. 

cyclinglady Grand Master
cyclinglady
Posted

You have some serious decisions to make.  I know that you are feeling bad and like most of us, have been sick for years and years without a definitive diagnosis.  I wrote a lovely response and the forum dropped service (that or my internet provider) :angry: when I went to post it last night.    Now even the font is messed up and I did nothing to change that!  

Anyway, you can continue to eat gluten daily because your new GI is bound to order a new celiac panel.  He might not order an endoscopy based on your old test which is more than a year old and one that he did not order.  It's only for a few more weeks.  I do not think a significant amount of damage will be incurred, but I do not know all your symptoms.  I had moderate to severe damage and yet I had no intestinal symptoms just anemia.  Go figure!  A firm diagnosis is good if you have kids and want them to get tested.  It is nice too have have medical, family and friends support because lab results rarely lie! 

You could just go gluten free.  My hubby did that 14 years ago based on poor advice of his GP.  It worked! It took about a year, but he became well.  He has adhered to the gluten-free diet all these years despite not having a diagnosis. I guess that is why I needed to know for sure when I was diagnosed because I could not believe that both of us would have issues with gluten! 

My Aunt and cousin went gluten-free.  One based on the advice of her chiropracter (not normally recommended) and the other because they failed to do proper testing despite having an endoscopy.  I was diagnosed right after so we figure they have celiac disease.  They refuse to do a gluten challenge because 12 weeks for consuming gluten....would make them pretty sick.  Same for my hubby.  

So, you need to figure out what is best for you.  Will your family support you no matter what you decide?  Will you adhere to the diet without a diagnosis?  Only you can decide!

I wish you well!  

Pooh bear Newbie
Pooh bear
Posted
  • Author

Thank you so much for your response, having someone educated in this and understands is a blessing!

Because I don't know, I will go awhile gluten free and someone would have a birthday, then I would eat gluten for a couple of weeks because I already blew it! It has been an on and off cycle only this time it has been harder than usual on my body and emotionally.

Thank you for all you do!

cyclinglady Grand Master
cyclinglady
Posted

Finding a doctor who is knowledgeable about celiac disease?  See if there is a celiac support group in your area and ask for their input.   Search the Internet and actually call doctors and talk to the front desk.  I found my new GI because the directory supplied by my insurer stated that he specializes in celiac disease.  Right there in print!  

it sounds like you need that second opinion in order for you to adhere to the gluten-free diet.  The diet is so critical.  Each gluten exposure to a celiac sets off (triggers) an autoimmune response.  For some It last for days, others weeks.  I was glutened in July and it took me three months to feel well (antibodies were higher than my initial levels at diagnosis).  This time I had severe GI issues.  And my anxiety went through the roof.  Now I am dealing with hives and rashes.  So, my exposure  (accidental, unknown source) caused more damage.  I also have osteoporosis (plus fractures) from celiac disease.   I hope that I am not acquiring another AI disorder!  But being gluten free has helped me stablize my osteoporosis and thyroid and II hope it will prevent other AI disorders from developing!   So it is worth it to stay on the diet.

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      26F!
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