Lab help

[Lissa283]

So, I have posted on here before and been told I may have celiac disease, but I still have questions. My labs are ttg iga (negative), ttg igg (strong positive 12.8), the total iga was normal a couple weeks ago but they never tested it originally. I had a negative biopsy and was told to go gluten free because of all my symptoms which is a LONG list and very similar to the celiac disease symptoms. I also had genetic testing that was negative. I'm so confused. 

[cyclinglady]

Are you doubting your diagnosis?  Have you been gluten free since. 3/2015?  Have your symptoms resolved?  

I am a bit confused.  When did you get genetic testing?  Has the original TTG of 12.7 come down?  It sounded like you were borderline or just developing celiac disease.  Did you ever find out how many biopies were taken?   I really not understanding what you need.  This is what you wrote in March:

(IP: 96.229.207.198) · 

Posted 6 March · Report post

So my whole story started 6 months ago when I started getting large, pale, smelly loose stools everyday, serious fatigue, joint pain in my knuckles, headaches, a "haze", nausea, bloating.  I have had GI issues on and off since I was a teen (I'm 32 now).  I went to my PCP, then to an allergist, then to a rhuematologist, and then to a GI. My abnormal tests are as follow:

 

WBC - 2.5 and 3.2 (both low)....I had 3 our of 4 draws be low in a year period

Vit B12 - 350 (again low)

TTG 12.7 (normal is <6...6-8 is weak postive)

 

I recently had an endoscopy and colonoscopy which showed chronic gastritis and "reactive lymphoid aggregates" in my colon....celiac was negative.  I have read this finding could mean crohn's or ulcerative colitis, but I don't really meet any of the other diagnosing criteria for those inflammatory disorders.  

 

I haven't heard back from my doctor about what the next step with be....They did not check a whole celiac panal (only the ttg), but after my endo/colo, the doctor told my husband that I should start a gluten-free diet.  

 

What should I think of all this??

 

Please help!

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[Lissa283]

I know it's confusing. 

January-labs were done and ttg iga (negative) and ttg igg 12.7 (positive), no total iga was done or any other celiac labs

february- endoscopy was negative

march-was told to go gluten free 

I have been gluten free since then and all my symptoms resolved

october- had my labs redrawn, including genetic testing, which all came back negative and now they tell me I don't have celiac. They DID NOT check the ttg igg, they only did the iga. 

[cyclinglady]

Ugh!  How can your doctors rule out celiac when they don't run the same tests that they did the first time around?  Have they forgotten the basics from their fifth grade science protect?  They keep throwing in different variables!  

I tested positive on the DGP iga  only when I was first diagnosed.  I got glutened in July.  I did not know what glutened me, but it was bad.  Went to my new doc (new insurance) and she is only authorized to order the TTG.  The results were negative and she anticipated that so she referred me to a GI who could run the entire panel.  Yep, my DGP iga  result was positive.  I did get glutened.  Unfortunately, it can not tell me the cause of my glutening and I am not Miss Marple (though I tried).  

Your doctor should have ordered the TTG IGG test.

There have been studies showing that there  are celiacs who do not have the standard sets of genes.  You can google that.  And there are studies that show it is easy to miss damage in the intestine.  You need to find out how many samples were taken and evaluated by the pathologist.  Doctors still do not know much about celiac disease.  Reasearch is constantly evolving.

finally, your symptoms resolved on the gluten-free diet.  Pretty telling, isn't it?  Think about this.  Do you really need a firm diagnosis?  My hubby went gluten-free 14 years ago per the advice of my allergist and his GP.  It worked.  Gluten was a problem for him.  He has maintained the diet for all these years.  He refuses to do a challenge and I can not blame him.  I needed a firm diagnosis because I was shocked that we would both have it.  Plus, I was anemic at the time and going through menopause.  I did not have tummy issues!  I wanted to know for sure!  

I hope this helps.  ?

 

 

[Lissa283]

It's really more for peace of mind and to ensure that I get proper follow up. I work as a nurse in healthcare and I know how hard it is to get things you need. I also hate not knowing for sure. What if it's crohns or something else? They just stop the search and say you have gluten sensitivity, which might not be the right answer. In my gut I feel like it's celiac disease with everything I've read about other people's experiences and the literature. I hate that medicine just lumps me into the larger probability when I may be the outlier that is the one percent with celiac without the gene. 

[nvsmom]

Strong positive tTG tests are usually caused by celiac disease, 95% of the time.  There is a false negative rate of about 5%, but they generally are not strong positives.  If the range is 1-4, a weak positive is a 4.5 or 5.  KWIM?

I agree with Cyclinglady that your doctors seem to have lost their wits.  Plus if you retest after going gluten-free, your labs should be negative.  We all worked, or are working towards that.

The genetic tests are not perfect either. It appears that 97% of celiacs have those genes (DQ2 and or DQ8) but about 3% don't. It is rare but it happens.

With celiac follow up care, all you really need is to check nutrients (Ca, Mg, K, Fe, ferritin, Zn, Cu, B12, D, A), check bone density, check for anemia (the most common celiac disease symptom) and keep an eye out for other autoimmune diseases, especially hashimoto's and T1D.  Some doctors like to check dietary compliance with the blood tests, but doing that before eating gluten-free for at LEAST 6 months is often pointless since the tTG antibodies can take months or a good year or more to come down.

I would do what you can to get a celiac disease diagnosis, but if you can't get that then get one for non-celiac gluten sensitivity (NCGS) so it is one your record in case you need medical care (or hospital food) in the future.

Hang in there.