Test Results And Gluten Challenge (Failure) More Confused

[meg0207]

Hi my name is megan. 9 months ago i was dx with primary biliary cirrhosis which is an autoimmune disease. I learned since then so much about autoimmunity but still had few answers to my lingering digestive issues ( gas bloating mucousy-stool nausea) After much research and not much help from my GI doc I went gluten free assuming I possibly had celiac too. That was 4 months ago and my symptoms vanished but did return from time to time when I was not vigilant about my diet.

I made my 6 month follow up appointment with my GI and proudly announced my findings and asked for his blessing. he ordered a celiac panel but it only included 2 tests.... total serum iga and the tTg. Iga neg. Ttg neg ( my score was 19, the cut off being 20 and greater. I asked him if the test would be accurate since i had been gluten free for 4 months. He said it didnt matter and that a celiac stays positive for 2 years after going gluten free.

Feeling assured that i was not celiac i ate pizza one day and felt fine. I ate a burger the next day and that went ok too. But 2 days later i woke up racked with bone and joint pain, belly pain , diarrhea, chills, and nausea to the point where i ended up in emergency. I was dx with nothing more than " probably a stomach virus". I accepted that, stayed home 2 days, slept, ate very little but nothing with gluten. I also notice my acne returned along with bleeding gums and 2 sores on the roof of my mouth.

So now Im back to believing i have celiac or Im crazy. Any feedback particularly on the blood tests would be much appreciated. Thanks for reading my story

[kareng]

Sorry but your doctor is, well, um, I am having trouble finding a " nice" word.

You need to be eating gluten for at least 12 weeks prior to blood testing. Yes, some people can take a few months for the antibodies to completely disappear, but many seem to have thiers go down quicker.

These are some links from actual medical doctors. Perhaps your doctor would like to see them? Or you could find another doctor?

Open Original Shared Link

"A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy."

Open Original Shared Link

"It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."

[nvsmom]

Yes, I agree with Kareng - your doctor is a bit of a doorknob.  

 

He only gave you one celiac disease test (ttG IgA - tissue transglutaminase) and that test can miss up to a quarter of all celiacs WHEN they have been eating gluten in the 3 months prior to testing.  He is correct that the tTG IgA can stay elevated for a couple of years but that is in a small minority of celiacs.  

 

My ttG IgA was positive when I was diagnosed. My normal range was also 0-20 and my results were >200, which could have meant anywhere between 201 and 1000 or so.  At 6 months gluten-free my ttG IGA was down to about a 30, and by 9 months gluten-free it was a tiny bit over 20.  If my initial ttG IgA result was lower (which is more normal for celiacs) like a 45, I am POSITIVE that my later testing would have gone into the normal range much sooner.... That could have happened to you.

 

The other test, the serum IgA, is just a control test. About 1 in 20 celiacs are deficient in IgA so all IgA based celiac tests (tTG IgA, DGP IgA, etc) will give a (false) negative result. Your IgA was within the normal range?

 

You may want to consider doing the gluten challenge for 3 months and then retesting if you don't want to eat as strictly gluten-free as a celiac must.  If you do indeed have celiac disease, you can't have slip ups very often or your healing will be very slow.  I'm of the opinion that if you get glutened more than a couple of times per year, then you aren't being careful enough.  Many poeple who suspected celiac disease needed that diagnosis to help motivate them to stay that strict with their diet.

 

If you do test, get these tests:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endomysila antibodies) 
• AGA IgA and AGA IgG ( antigliadin antibodies) - older and less reliable tests that have been replaced by the DHP tests
• endoscopic biopsy - 6 or more samples taken

Another reason to get these tests done is that in a small minority (~5%) of weak positive ttG IgA results can be caused by other autoimmune diseases like hashimotos, T1 diabetes, colitis, crohn's, and chronic liver disease.  I myself suspected that my tTG igA stayed just above normal for so many months because I have Hashi's and another health issue - I was wrong though because it did eventually come right down.  Just something to consider.  

 

Best wishes and welcome to the board.  

[kareng]

Aha! Doorknob! That's the G rated word I was looking for! Lol :0

[nvsmom]

[meg0207]

Thank you both for your replies and all info - overwhelming stuff. Im probably going to follow up with the tests you outlined with my primary md. My GI doc is a liver specialist so i cant really fault him for his lack of expertise in celiac disease.

I do have another question though. IF my symptoms were the result of glutening, how come it took almost 3 days for me to get sick? Is that common?

[ravenwoodglass]

Yes it is common. It can take time for the antibodies to build up and cause a reaction. 3 days is what it takes for me to get a gut reaction although my neuro symptoms hit within a day. Not everyone gets hit within hours of consuming gluten or another food they may be intolerant to.  If you do want a doctors diagnosis you will have to do a gluten challenge though. 

[meg0207]

I am literally floored by everything Im reading on this site todaY. I had no idea it took days to react. I am not sure i want a dx if I have to gluten myself. My illness episode was so bad that even if there is only a tiny chance it is celiac I will not eat gluten. Im still feeling bloated, have heart burn and little appetite and its been days since the episode.

I wish i had suspected celiac back in january when i had an edg (routine screening for esophageal varices from my liver disease). I could have been biopsied and this crazy phase of not knowing would be over.

There is so much good info on this site and Im grateful I found it.

[nvsmom]

Yes, 0-72 hours is the norm for a reaction to start, which can make it really tough to pin down the food that caused it!

 

I usually get a stomach ache and bloating when I get glutened, but not always.  Sometimes I just get the fatigue a couple of days later or my joints start hurting, so I can be slow to realize that I was even glutened.

 

Best wishes.