Blood Test Results HIGH?

[JD-New to Celiac]

I am a newbie and I was wondering what does it mean when your bloodwork comes back and reads - Transglutaminase IgA >250 | and Gliadin IgA >89? The PCP said I had Celiac and referred me to a GI, but with limited appointments I can't get in to see GI for over a week. Do those numbers pretty much guarantee Celiac? Are they very high? I have other symptoms too including rapid weight loss.

[trents]

Those blood tests are not entirely specific and can indicate other autoimmune problems is my understanding. You will likely need an endoscopy to confirm celiac disease. Alternatively, you can eliminate gluten from your diet and if you start to feel better it would speak for itself. But if you will be getting and endoscopy, don't go gluten free until after the test or it may be invalid.

[Scott Adams]

It sounds like your doctor is convinced by your results that you have celiac disease. The question is will they want you to also do a biopsy? More and more, especially with children, doctors are not recommending a follow up biopsy, and this is probably even more true during this covid pandemic. 

Before doing anything ask your doctor what the next step is. They may want you to go gluten-free at this point and see if any symptoms go away. You did not mention whether or not you have symptoms.

[JD-New to Celiac]

Thank you for the replies. Yes, PCP did diagnose Celiac and told me to go on a gluten free diet immediately, which I have been doing for about a week. He did refer me to a GI, but with crazy virus situation the appointment was at that time over two weeks.

Yes, other symptoms lost 30 pounds over two months and I am still losing. Loss of appetite. Low ferritin. Low WBC - but the doctor does not understand that reading as I've had that now for a number of months. The WBC level recovers and drops again. Joint pain. Headaches. Severe reflux that causes coughing and loss of voice. Constipation. There is a family history of auto-immune. I also have high lymphocytes and low neutrophils. Extreme fatigue. I've had pain on my lower left abdomen for a long time but CT did not show anything. More recently my entire abdomen was in pain. Still have the side pain but the abdominal pain has eased. Joint pain in knee, back, shoulder, etc. seems to travel. It is weird that typically just one area at a time is in extreme pain and nothing takes the pain away. The PCP did put me on steroids six months ago for the knee and the pain disappeared but the steroids got me very sick. This was before any conversations on Celiac.

So, like many on this website, seeking relief. Seeking answers. It is just awful.

[trents]

If you have only been eating gluten-free for a week there has not been near enough time for gut healing (villi regrowth). Feeling better after going gluten-free can take weeks or months to realize and full recovery of the villi longer than that. And I would also be doubtful if your awareness and understanding of how and where gluten is hidden in processed foods and medications is well-developed yet. That can be quite and education process. Studies have shown that most Celiacs who think they are eating gluten-free are realling eating low gluten, especially if they still dine out. gluten-free living is the kind of thing where you are either all in or you are not in at all. Just cutting down on gluten is going to prevent or at least delay healing.

Having said that, if there is an endoscopy in the works to confirm the Celiac diagnosis, you need to not be eating gluten-free several weeks before that or the results will not be accurate.

[Gemini]

On 8/4/2020 at 7:52 PM, trents said:

Those blood tests are not entirely specific and can indicate other autoimmune problems is my understanding. You will likely need an endoscopy to confirm celiac disease. Alternatively, you can eliminate gluten from your diet and if you start to feel better it would speak for itself. But if you will be getting and endoscopy, don't go gluten free until after the test or it may be invalid.

Trent’s.......those antibody tests are specific to Celiac.  While it looks like the doctor did not test the EMA, with results that high and rapid weight loss, Celiac is a strong contender.  Other AI conditions can raise tTg but usually only by much smaller numbers.  The Gliadin IgA is an older test but the one they used when I was diagnosed 15 years ago.  It is the test for gluten consumption in the diet so it is specific to Celiac.

My blood work was that high and I also had very rapid weight loss.  I did not have a biopsy as I was too sick at the time.  But every single doctor I have ever seen since, has never doubted my diagnosis when they see my blood work.  I also had a very fast and positive response to the gluten-free diet, with blood work falling to low normal ranges 1 year into the gluten-free diet.

[Gemini]

JD........low white cell counts are common in autoimmune disease.  Mine were very low for my entire life ( I am now 61) and they have gone up to almost normal range now once I had been gluten free for awhile.  It did take a long time for them to bounce back, but they did.  I was diagnosed at age 46.

All of your symptoms scream of Celiac so if you do not have an endoscopy, recheck of antibodies for a downward trend and decrease of symptoms over time are another way to confirm it. There is also gene testing. That will not diagnose you but tell you if you have the genetic predisposition to develop Celiac.

 They may miss damaged portions of the small intestine on biopsy, as the small intestine has the surface area of a tennis court.......really! It’s like looking for a needle in a haystack.  Unless, of course, you are totally flat or have a lot of damage.  But the endoscopy does not rule out Celiac 100% if it comes back negative, for the above mentioned reasons. Especially with those high numbers you had on the blood work.

Best of luck to you and let us know how it goes!

[GFinDC]

Hi JD,

I suggest you call your GI now to discuss the plan.  If they plan to do an endoscopy will it be soon?  Also, if they plan an endoscopy how much gluten and for how long before do they want you to eat gluten?  Often the answer is 2 weeks of eating a small amount of gluten each day before the endoscopy.  That period of eating gluten is called a gluten challenge and is needed because they want to be sure the immune response is still going and they can detect the gut damage.

I suggest you explain to the GI that your symptoms are severe and you want to get the endoscopy done ASAP.  They may be able to put you on a drop-out waiting list so if an appointment slot opens up they can call you sooner.

I don't know if you have tried Pepto Bismol yet.  Pepto Bismol can help relieve some symptoms temporarily.  Another thing that may help is peppermint tea.  Peppermint tea relaxes smooth muscle and can relieve gas/bloating.

Eliminating all dairy now may help too and will not affect your celiac test results.  Celiac destroys the villi that make the enzyme lactase which digests lactose (milk sugar).  Without lactase we become lactose intolerant and that can cause GI symptoms like diarrhea and bloating.

Welcome to the forum JD! 

Edited August 6, 2020 by GFinDC

[trents]

Just a note. I don't know if this applies but just in case: Peptobismol is contraindicated if you are on blood thinners and if you have GERD peppermint tea would be contraindicated. Peppermint relaxes the lower esophagial sphincter. 

[JD-New to Celiac]

12 hours ago, Gemini said:

JD........low white cell counts are common in autoimmune disease.  Mine were very low for my entire life ( I am now 61) and they have gone up to almost normal range now once I had been gluten free for awhile.  It did take a long time for them to bounce back, but they did.  I was diagnosed at age 46.

All of your symptoms scream of Celiac so if you do not have an endoscopy, recheck of antibodies for a downward trend and decrease of symptoms over time are another way to confirm it. There is also gene testing. That will not diagnose you but tell you if you have the genetic predisposition to develop Celiac.

 They may miss damaged portions of the small intestine on biopsy, as the small intestine has the surface area of a tennis court.......really! It’s like looking for a needle in a haystack.  Unless, of course, you are totally flat or have a lot of damage.  But the endoscopy does not rule out Celiac 100% if it comes back negative, for the above mentioned reasons. Especially with those high numbers you had on the blood work.

Best of luck to you and let us know how it goes!

It was good to hear that WBC low is normal for Celiac. One post I read suggested Lupus as I believe that will destroy white blood cells. You never know what you're reading though on the internet so I was not sure and the PCP did not know what might be causing it.

Yes, Gemini, the doctor did order the EMA IgA test and it came back "Positive and abnormal". I forgot to list it. I read that with children if these tests I mentioned all come back with the results high/positive, the doctor (in my case the PCP) will diagnose Celiac and the endoscopy/biopsy is not required. I don't want to do the endoscopy. I did post a question on the video capsule endoscopy as I might be open to that. I don't want to do anything invasive.

[Scott Adams]

I find it strange that your doctor would instruct you to go gluten-free while at the same time referring you to a gastroenterologist. You do need to be eating gluten daily for at least a couple of weeks before doing a biopsy, and going gluten-free now will allow your villi to begin healing, and villi damage is what the GI doctor will be trying to see.

If you're fine with the gluten-free diet and don't need the biopsy to convince you, and if your symptoms improve on the gluten-free diet, perhaps discuss with your doctor the possibility of not doing it. Again, I believe in less than 5 years doing a biopsy to confirm celiac disease will be a think of the past, but, then again, I've been saying this for more than 5 years now...

[Gemini]

2 hours ago, JD-New to Celiac said:

It was good to hear that WBC low is normal for Celiac. One post I read suggested Lupus as I believe that will destroy white blood cells. You never know what you're reading though on the internet so I was not sure and the PCP did not know what might be causing it.

Yes, Gemini, the doctor did order the EMA IgA test and it came back "Positive and abnormal". I forgot to list it. I read that with children if these tests I mentioned all come back with the results high/positive, the doctor (in my case the PCP) will diagnose Celiac and the endoscopy/biopsy is not required. I don't want to do the endoscopy. I did post a question on the video capsule endoscopy as I might be open to that. I don't want to do anything invasive.

Ahhhhhhh........that changes everything!  😉. With a high positive tTg and a positive EMA, you have a 99% of it being Celiac.  It probably should be 100% but you know that doctors cannot give it the 100 without actually seeing it on biopsy.  LOL!

It sounds like you have classic Celiac......which is the people with gastric distress, noticeable and rapid weight loss, fatigue, etc., etc., etc.  I was down to 92 pounds when diagnosed and people thought I had cancer. Lucky for me it was Celiac!  I was very sick with vomiting and the awful Celiac diarrhea......which is different than the regular kind and honestly, it might as well have been African dysentery.  I was severely dehydrated also so no way was I going to undergo an invasive test when I was so wobbly and sick.  I had really high blood work like yourself, a positive EMA, a double Celiac gene on testing and my red cell counts were scary low, I was so anemic.  If that isn’t enough for a diagnosis, I give up!  You have to be careful with the weight loss because at some point when you reach critical mass, it speeds up and I was losing a pound a day by the time I got my blood work back. So, I went gluten-free immediately and within three days, without using any anti-diarrhea meds, the gastric blow-out stopped, never to return.  Bingo.....we have a winner here.

So, if you cannot get the endo booked right away or you choose not to have one with the blood work you already have, you must be able to follow the diet strictly, for the rest of your life, without doubting your diagnosis. I have been able to do that without any problem.  Honestly, once you get beyond the knowledge of how to do the diet correctly, being gluten-free is not a burden, for the most part.  Travel can be more tricky but I manage to travel internationally with no problems. It all depends on where you want to go. But the range of gluten-free foods today, and the knowledge that is out there, makes it easy for me to stay on the wagon. And my reward is that I am healthier now at 61 than I had been for the first 46 years of my life.  My blood work is awesome these days!  But it does take time to heal from all the damage and rid yourself completely of the symptoms.  Be patient.

As far as the white cell counts are concerned, low counts are associated with many autoimmune diseases.  White cells are part of your immune system so this is why they are affected.  It is only a big deal if you get sick a lot.  Funny enough, once I healed from Celiac, I rarely get sick anymore......even when my counts were low. But they hover at the low end of normal now. You need to listen to doctors but also be aware that they can scare monger.  I have 4 autoimmune diseases and sometimes they act like I am going to fall apart.  Now, that could happen because I am human but I eat well, exercise/weight train religiously and feel great. I just look bad on paper.  😉. The reality is far different, at least for now. I also choose to be positive about things while some doctors just want to monitor you endlessly because they are convinced you will pop with something bad. Yes, that could happen to anyone but being positive really helps with recovery and maintaining good health.

There has been very little food that I have not been able to successfully re-do as gluten free and have it be delicious.  A few things I had to give up forever but I got over it pretty quick.  There is so much great food out there we can eat safely, no need to cheat or grieve too long over it.

Let us know how it goes with the gastrointestinal doctor.  He should be able to diagnose you with that blood work but they are all different in how they approach this. You could always go gluten-free now and re-test your blood work to see if the antibodies are coming down. You have a diagnosis now but if you continue to have problems down the road, you still have the option of a scope to see what else might be going on.  That was not my experience.  I just got better and better, over time. My gut has not bothered me in 15 years! Congratulations on most probably finding out the root cause of your problems.  

[JD-New to Celiac]

4 hours ago, Scott Adams said:

I find it strange that your doctor would instruct you to go gluten-free while at the same time referring you to a gastroenterologist. You do need to be eating gluten daily for at least a couple of weeks before doing a biopsy, and going gluten-free now will allow your villi to begin healing, and villi damage is what the GI doctor will be trying to see.

If you're fine with the gluten-free diet and don't need the biopsy to convince you, and if your symptoms improve on the gluten-free diet, perhaps discuss with your doctor the possibility of not doing it. Again, I believe in less than 5 years doing a biopsy to confirm celiac disease will be a think of the past, but, then again, I've been saying this for more than 5 years now...

Hi Scott - thanks for the replies.

I don't believe my doctor intended for the GI to diagnose me with Celiac. I believe if I recall he said that a GI is specialized in the disease and would better understand my needs going forward and that is why I was referred. I believe the reason for going gluten free was the weight loss and the current symptoms.

After reading both on this site (including your posting from May) and other sites I feel comfortable with the diagnosis.

[JD-New to Celiac]

1 hour ago, Gemini said:

Ahhhhhhh........that changes everything!  😉. With a high positive tTg and a positive EMA, you have a 99% of it being Celiac.  It probably should be 100% but you know that doctors cannot give it the 100 without actually seeing it on biopsy.  LOL!

It sounds like you have classic Celiac......which is the people with gastric distress, noticeable and rapid weight loss, fatigue, etc., etc., etc.  I was down to 92 pounds when diagnosed and people thought I had cancer. Lucky for me it was Celiac!  I was very sick with vomiting and the awful Celiac diarrhea......which is different than the regular kind and honestly, it might as well have been African dysentery.  I was severely dehydrated also so no way was I going to undergo an invasive test when I was so wobbly and sick.  I had really high blood work like yourself, a positive EMA, a double Celiac gene on testing and my red cell counts were scary low, I was so anemic.  If that isn’t enough for a diagnosis, I give up!  You have to be careful with the weight loss because at some point when you reach critical mass, it speeds up and I was losing a pound a day by the time I got my blood work back. So, I went gluten-free immediately and within three days, without using any anti-diarrhea meds, the gastric blow-out stopped, never to return.  Bingo.....we have a winner here.

So, if you cannot get the endo booked right away or you choose not to have one with the blood work you already have, you must be able to follow the diet strictly, for the rest of your life, without doubting your diagnosis. I have been able to do that without any problem.  Honestly, once you get beyond the knowledge of how to do the diet correctly, being gluten-free is not a burden, for the most part.  Travel can be more tricky but I manage to travel internationally with no problems. It all depends on where you want to go. But the range of gluten-free foods today, and the knowledge that is out there, makes it easy for me to stay on the wagon. And my reward is that I am healthier now at 61 than I had been for the first 46 years of my life.  My blood work is awesome these days!  But it does take time to heal from all the damage and rid yourself completely of the symptoms.  Be patient.

As far as the white cell counts are concerned, low counts are associated with many autoimmune diseases.  White cells are part of your immune system so this is why they are affected.  It is only a big deal if you get sick a lot.  Funny enough, once I healed from Celiac, I rarely get sick anymore......even when my counts were low. But they hover at the low end of normal now. You need to listen to doctors but also be aware that they can scare monger.  I have 4 autoimmune diseases and sometimes they act like I am going to fall apart.  Now, that could happen because I am human but I eat well, exercise/weight train religiously and feel great. I just look bad on paper.  😉. The reality is far different, at least for now. I also choose to be positive about things while some doctors just want to monitor you endlessly because they are convinced you will pop with something bad. Yes, that could happen to anyone but being positive really helps with recovery and maintaining good health.

There has been very little food that I have not been able to successfully re-do as gluten free and have it be delicious.  A few things I had to give up forever but I got over it pretty quick.  There is so much great food out there we can eat safely, no need to cheat or grieve too long over it.

Let us know how it goes with the gastrointestinal doctor.  He should be able to diagnose you with that blood work but they are all different in how they approach this. You could always go gluten-free now and re-test your blood work to see if the antibodies are coming down. You have a diagnosis now but if you continue to have problems down the road, you still have the option of a scope to see what else might be going on.  That was not my experience.  I just got better and better, over time. My gut has not bothered me in 15 years! Congratulations on most probably finding out the root cause of your problems.  

Gemini - thank you for your detailed reply. It was very helpful. I've decided I am comfortable with the decision to be gluten-free and not worry about the biopsy.

Again thank you for your time and interest.

[Kate333]

Hi JD.  If you're also suffering from severe reflux, hoarseness, and abdominal pain, it's a good idea to get that endoscopy so the GI doc can get a good baseline look at your gut from throat to small intestine...(not just to confirm celiac disease diagnosis).

Don't get discouraged about your blood test numbers.  They aren't unusual.  I, too, am a relative "newbie" to this journey.  My first TTG blood test number (last fall) was very similar to yours (224).  Now, after several months on a strictly gluten-free diet, my last blood test (in June) showed a reading of 73.  But, as others have noted, it does take awhile to get back to the "normal" blood test range and begin to heal. 

The most important thing you can do for yourself now is learn the nuances of gluten-free diets and how to avoid cross-contamination.  As I have learned from others here, it's not as simple as avoiding "obvious" wheat, barley, and rye foods because gluten is literally "hidden" in MANY packaged foods and often given exotic, odd names on ingredient lists.  You have to develop a laser-sharp eye about reading (understanding and trusting) all labels (if you eat packaged foods)...I tend to be pretty impatient, lazy, and hate spending much time in busy grocery store aisles, reading prices or labels.  So I've found it's far much simpler for me to avoid all packaged food entirely in favor of fresh meats, fruits, veggies I can quickly buy and just prepare at home.  IMO that's far healthier eating anyway.  I also lost weight at first, but I'm embarrassed to admit I have regained a lot on my recent "Pandemic Ice Cream Diet" comfort-food binge. 😉

I don't have joint pain but I do also struggle with fatigue and digestion issues. In my case, I think those issues may be linked more to anxiety/depression, insomnia than gluten.   

[DJFL77I]

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