Lab Testing Significance Question

[amanda12]

I have been through a year of severe joint pain, headaches and brainfog.  I have been through numerous tests and asked my primary care to check for celiac on a whim.  I have gotten the following labs back and was wondering if anyone can tell me the likeihood of a celiac diagnosis based on the below labs.  I do have a biopsy scheduled, but am just very curious and my GI is doctor is not responding to my questions.

• Tissue transglutaminase, IgG: 12 U/mL (normal <6 U/mL)
• TISSUE TRANSGLUTAMINASE AB, IGA: > 100 U/mL (normal <4 U/mL)
• ENDOMYSIAL ANTIBODIES, IGA: Positive
• Endomysial Ab titer: 1:40 (Normal <1:5)
• GLIADIN AB, IGG: 14 units(normal <20)
• GLIADIN AB, IGA: 38 units (normal <20 Units)

[GFinDC]

Looks like you have an immune response to gluten.  The endoscopy is to prove that immune response is actually causing damage to the small intestine.  If it is, then you have celiac disease.

If the endoscopy doesn't show damage. you could still have celiac disease but the immune response could be attacking a different organ/s.  Some people get damage in other parts of the body instead of or in addition to the gut.

[Fenrir]

More than likely you have Celiac Disease. You can't know for sure that it's celiac vs another disease without the biopsy but with your labs it's probably 90%+ Celiac Disease. Drs will typically not want to comment on the diagnosis until they have followed the appropriate clinical course. 

[amanda12]

Thank you, I appreciate the feedback. When I initially saw my GI doctor I only had the GLIADIN results back which she said was outdated lab and unreliable. Without having GI symptoms and no anemia she completly wrote off Celiac until my other labs came back. I just really want some answers. 

[Fenrir]

Yeah, until the biopsy is done there is no 100% answer but your TTG IgG is positive, 93% of people with a positive TTG IgG have celiac disease. Your endomysial Ab was positive and that is very specific for Celiac (99-100%). 

I'd be very surprised if your biopsy doesn't comeback with celiac as well. 

[amanda12]

That was the conclusion I was getting from my hours of reading on the topic and labs, but was interested in getting feedback from others that I was understanding the literature. I will be sure to post once I get my results.

[cyclinglady]

An endoscopy offers a benchmark of damage and to rule out concurrent illnesses (like H.pylori or SIBO). 

In the meantime, stay on a full gluten diet or your endoscopy results for celiac disease could be inconclusive.   You want to avoid being in diagnostic limboland.

Good luck!  

 

[amanda12]

Had my endoscopy today. Scalloped mucosa was found in the duodenum bulb. Second part of duodenum normal. Now I await the pathology results. Was told it would take 1-2 weeks.

[Gemini]

5 hours ago, amanda12 said:

Had my endoscopy today. Scalloped mucosa was found in the duodenum bulb. Second part of duodenum normal. Now I await the pathology results. Was told it would take 1-2 weeks.

Scalloped mucosa is Celiac Disease, along with your high numbers from blood work.  Having a positive tTg and Endomysial means there is a 98% chance of it being Celiac. 

Scalloping happens when there is enough damage to the small intestine that it changes surface tension and results in scalloping of the mucosa.  But there is still the chance they could miss the damage, if they don’t take enough samples.  It sometimes happens.  But that doesn’t mean you don’t have Celiac.

Your blood work mirrored mine.  I never had the biopsy because I was too sick at the time and with such high numbers on blood testing, it wasn’t necessary for me.  To date, there has never been a doctor I have seen in the last 15 years, who doesn’t believe I have Celiac once they see my blood work for diagnosis.  Times are changing and the biopsy is not always necessary or needed.  

The gliadin tests may be older but they are reliable.  That was what they used when I was tested and mine were positive.  They should not be discounted as part of a testing panel.  But they have updated with more sensitive tests so most use those now.

Congratulations.......you have found your problem!  It gets better from here on!

[amanda12]

Thank you. Your response is extremely helpful. All the doctor told told me that did the scope is that scalloped mucosa could be Celiac disease but scalloped mucosa is not "specific" to Celiac. It was only found in the bulb with the second part found to be normal. I think I have been brushed off by my GI doctor because I am not having any major GI symptoms. According to celiac.org up to 1/3 of adults dont have symptoms such as diarrhea etc. 

Do you think I should start a gluten free diet now or wait until my path results are back to ensure they dont want to do any additional testing?

I hope I have found my answer too. Celiac disease I know is a huge change in lifestyle but manageable in most cases. I have been evaluated for much worse in the last year (MS, RA, etc). Thanks again for your response.

[Fenrir]

23 minutes ago, amanda12 said:

Thank you. Your response is extremely helpful. All the doctor told told me that did the scope is that scalloped mucosa could be Celiac disease but scalloped mucosa is not "specific" to Celiac. It was only found in the bulb with the second part found to be normal. I think I have been brushed off by my GI doctor because I am not having any major GI symptoms. According to celiac.org up to 1/3 of adults dont have symptoms such as diarrhea etc. 

Do you think I should start a gluten free diet now or wait until my path results are back to ensure they dont want to do any additional testing?

I hope I have found my answer too. Celiac disease I know is a huge change in lifestyle but manageable in most cases. I have been evaluated for much worse in the last year (MS, RA, etc). Thanks again for your response.

I didn't have any of the most common symptoms of Celiac Disease. I mostly had joint swelling stomach pain (no diarrhea, gas...ect). Almost all my symptoms were none GI things. 

[amanda12]

Thank you. I have had very little stomach pain either. Mostly severe joint pain, numbness tingling in my hand and feet and headaches. As I think back I did experience some stomach pain and nausea when I went to an all inclusive resort in the fall and probably ate way more gluten than I normally do.

[Fenrir]

Sounds like a lot of the symptoms I had. The thing about celiac disease is it is systemic, meaning it can affect every part of your body including joints and nerves. 

[Gemini]

1 hour ago, amanda12 said:

Thank you. Your response is extremely helpful. All the doctor told told me that did the scope is that scalloped mucosa could be Celiac disease but scalloped mucosa is not "specific" to Celiac. It was only found in the bulb with the second part found to be normal. I think I have been brushed off by my GI doctor because I am not having any major GI symptoms. According to celiac.org up to 1/3 of adults dont have symptoms such as diarrhea etc. 

Do you think I should start a gluten free diet now or wait until my path results are back to ensure they dont want to do any additional testing?

I hope I have found my answer too. Celiac disease I know is a huge change in lifestyle but manageable in most cases. I have been evaluated for much worse in the last year (MS, RA, etc). Thanks again for your response.

Hi Amanda,

   Doctors just love to be vague, don’t they?  Scalloping may happen with other GI issues but I have never heard of any others except Celiac......and that doesn’t mean much because I am not a GI doctor.  However, I bet I have helped more Celiacs get diagnosed than they have.  ?  The reason it appears in the bulb and not further down is because you are lucky that it was caught earlier before damage  became more severe and involved your whole small intestine.

Starting the diet is your decision but that is what I did.  I had to because I had classic Celiac with all its lovely symptoms and I was losing weight at an alarming rate.  After only 3 days on the gluten-free diet, the very worst of my symptoms stopped without any meds to help so I had my answer.  However, it took much longer to totally recover.  You have nothing to lose by going gluten-free immediately because the gluten-free diet will not affect anything else this doctor may have in mind.  The diet will also not hurt you in any way. But I can tell you that with that blood work you had and the visual results of a scalloped bulb, I would bet a weeks pay you have Celiac. It doesn’t get an more obvious than that.  

The symptoms you do have occur with Celiac often and it is common for docs to look for those other things first.  They never think of Celiac being the root cause.  You may find they all go away after awhile on the gluten-free diet.  It’s kind of annoying that some docs have the same attitude they did when I tried to get diagnosed.  Have they learned nothing?

Do not fear the disease or diet.  It really is not that hard to do, once you know the ropes.  I adjusted really fast and have never looked back.  It is much easier to be gluten-free today than 15 years ago when I was diagnosed.  Stay on this forum for great advice!

 

[agentace]

Hi Amanda, I was actually just diagnosed last week and am like you and had very few GI symptoms (until I cut the gluten out, now I have a ton of GI issues when I get glutened). I too had tons of joint pain and neuropathy symptoms. I didn't start my gluten free diet until I got my endoscopy results, and I regret it! I could be feeling so much better by now (took two weeks to get results!). Good luck to you!

[amanda12]

Thank you. This forum has just been fantastic and has provided so much information to me. It is great to talk to people that are going through what I've been through. Cant help to think how much pain, anxiety and testing I could of avoided in the last year if this would of been tested sooner. I asked  for this to be tested. If I didnt, who knows how long it would have taken to get diagnosed. I will respond back with my official results. Thanks to all who responded!

[Fenrir]

11 minutes ago, amanda12 said:

Thank you. This forum has just been fantastic and has provided so much information to me. It is great to talk to people that are going through what I've been through. Cant help to think how much pain, anxiety and testing I could of avoided in the last year if this would of been tested sooner. I asked  for this to be tested. If I didnt, who knows how long it would have taken to get diagnosed. I will respond back with my official results. Thanks to all who responded!

Unfortunately, many doctors are not very well versed in how to properly diagnose or rule out Celiac Disease, even some GI doctors aren't. You really have to be your own advocate and insist on the correct tests and interpretation of them. It's good you're doing the right thing and keep at your doctors until they do the right thing. Many people don't do this and never get diagnosed. 

I was somewhat of an unusual case in that my primary doctor didn't know to test celiac but he didn't give up on figuring it out either. Eventually, he figured out it was GI but didn't know what it was affecting my GI. This with me having almost no GI symptoms. So he referred me to GI specialist and they have a Celiac specialist on staff so they had a preliminary DX of celiac disease within 5 days and then a month later I got the biopsy results. That's a lot faster than most folks get diagnosed. 

[amanda12]

That's great for you, seems it doesn't always work out that way. I have seen 4 different rheumatologists, 3 different neurologists and two different primary care. None of which thought about GI or Celiac.

I had a lumbar puncture, 3 different MRIs and pages of lab work.  The GI doctor totally dismissed it with just the gliadin results since I had little to no GI symptoms, no known family history and no anemia. She didnt want to set a followup appointment because her mind was made up. She changed her tune when my other labs came back. 

[cyclinglady]

My diagnosis was caught by a GI.  I went for a routine consult for a colonoscopy because, yes, I was over 50 and all my friends were getting them.    I did have anemia, but I also have a genetic anemia which masked my chronic iron-deficiency anemia and the old “you just have heavy periods” response.  Thankfully, my GI saw this in my charts, along with Hashimoto’s) and said he was going to test me for celiac disease.  If possible he would scope me from both ends.  The rest is history and I was shocked!  

Like Gemini (she is my “sister” on the East Coast), I am saddened that a celiac disease diagnosis is so elusive still to this day!  

Encourage your first degree relatives to get tested even if asymptomatic (good luck if you have relatives like Gemini and mine who would rather be ill).  A new study out of the Mayo Clinic indicates that 43% of relatives had celiac disease instead of the 1 in 10 previously thought.  

Be patient.  You can get well!  

2 hours ago, amanda12 said:

That's great for you, seems it doesn't always work out that way. I have seen 4 different rheumatologists, 3 different neurologists and two different primary care. None of which thought about GI or Celiac.

I had a lumbar puncture, 3 different MRIs and pages of lab work.  The GI doctor totally dismissed it with just the gliadin results since I had little to no GI symptoms, no known family history and no anemia. She didnt want to set a followup appointment because her mind was made up. She changed her tune when my other labs came back. 

Keep sharing!  Some doctors still think that celiac disease is only occurs in malnourished European little kids.  

[GFinDC]

Hi Amanda,

I suggest you wait to go gluten-free until your final test results are back.  It's unusual but there have been cases where test results were lost somehow and the process had to be done over.  That would mean going back on gluten and having a new endoscopy.  Which could be a very unpleasant experience due to renewed celiac symptoms.  What you could do is cut down the amount of gluten you eat each day.  It only takes a small amount of gluten to keep the immune system active.

Some other diet changes you can make now are removing nightshades and dairy from your diet.  Nightshades can cause joint pain in some people.  Dairy is often a problem for newly gluten-free people to digest.  So giving it up for a few months may help your symptoms now.

Another possible helpful diet change that won't affect testing is to cut out most carbs and sugar.  Carbs and sugar feed bad bacteria that can cause bloating and pain in the GI system.  This is worse in people with a damaged gut.

You can also call your doctor and ask when the final results will be available.  I agree that the scalloped appearance of the small intestine is classic for celiac disease.  And usually indicates a severe amount of damage to the gut.  That the damage is in a small section of the gut is good.

[Gemini]

6 hours ago, cyclinglady said:

 

Encourage your first degree relatives to get tested even if asymptomatic (good luck if you have relatives like Gemini and mine who would rather be ill).  A new study out of the Mayo Clinic indicates that 43% of relatives had celiac disease instead of the 1 in 10, as previously thought.

Ha!  I knew it!  Never believed the 1 in 10 results.  

I worked with a man from Ireland and he had 4 other siblings.  He was a fraternal twin to one of them.  The only ones who didn’t have Celiac were my friend and his father.  Mom and the other 3, plus his fraternal twin all were diagnosed.  This is why everyone in Ireland knows what Celiac Disease is!

[amanda12]

Pathology report came back with mild villous blunting with intraepithelial lymphocytosis in the 2nd portion of the Duodenum (appeared normal on endoscopy) and villous blunting with intraepithelial lymphocytosis in the duodenal bulb.  This with my labs made the diagnosis of Celiac.  I was told by a nurse that the damage was not specific to Celiac disease but consistent so with the labs the diagnosis is made.

Report as showed Chronic inflammation with features of reactive (chemical) gastropathy in the stomach (negative for H. Pylori).  I was told this was no big deal and it was so mild it didn't even show up on imaging.  

Has anyone had reactive gastropathy come back with their positive Celiac results?  Anything I should know?

Thanks to all for their kind words and advise.  This forum has been very helpful to be as I went through this diagnostic process.  I am just thrilled to finally have an answer and doctors now knowing its not all in my head!

[Fenrir]

Have you been using OTC pain relievers a lot? Due you drink alcohol?

Those are the two main things that cause gastropathy. I could see it happening to celiacs because you may be taking ibuprofen for the pain.  Could also be Naproxen(Aleve), Aspirin, Celebrex...ect

Also, good to hear you got a solid DX. Now you know what you have to do to get better. 

[amanda12]

I don't think I had been taking a ton of OTC but I definitely had been taking more than I ever have in my life.  As for alcohol I'd say I have 2 or so drinks on the weekends which I don't consider a lot.  In the last few months I have had very little because I was on a med for a month that didn't allow alcohol (all of January).

[Fenrir]

Just now, amanda12 said:

I don't think I had been taking a ton of OTC but I definitely had been taking more than I ever have in my life.  As for alcohol I'd say I have 2 or so drinks on the weekends which I don't consider a lot.  In the last few months I have had very little because I was on a med for a month that didn't allow alcohol (all of January).

Well, might be that because your GI tract was irritated by the celiac disease taking NSAIDs might cause gastritis even in small amounts. I don't think it's something to worry about(see your Dr. for sure) as long as you don't have continued symptoms after you go gluten free for several months.