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Rheumatology Appt Yesterday/lupus
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I'm so confused right now. I had a rheumatologist appt yesterday. He told me he thinks I have lupus and told me to start taking plaquenil right away. He took 12 tubes of blood and results should be back in a week. He also said that lupus could cause villi atrophy. He saw my celiac blood work and confirmed biopsy in the file. Last week my celiac panel was redrawn and looks real good. He said that it shouldn't look that good yet. That my celiac numbers are coming down quite fast. (Like is he trying to imply lupus is causing that for me and not celiac's?!? My celiac numbers were all high in October. Everything.)

 

I don't know what to think and am scared about this lupus diagnosis. He must feel pretty positive to tell me to start taking the medication now, right away, before the blood work comes back.

 

Does anyone else here take plaquenil? Any advice? Side effects? Do you take it for Lupus or something else? How often do you go to the rheumatologist. Any insight into what life is like would be helpful. I'm basically just eating plain fruit, veggies and meat but do you eat anything specifically because of lupus?

Also here are my old and new celiac numbers:

From 10/21:

Celiac Disease AB Profile

Deamidated Gliadin 119 units High 0-19
Abs, IgA
Deamidated Gliadin 61 units High 0-19
Abs, IgG
t-Transglutaminase (tTG) 29 U/mL High 0-3
IgA
t-Transglutaminase (tTG) 19 U/mL High 0-5
IgG
Endomysial Antibody Positive
IgA
Immunoglobulin A, Qn, 205 mg/dL 91-414

 

11/14 biopsy confirmed celiac's.

 

Then redraw last wk:

 

Celiac Disease AB Profile

 

Deamidated Gliadin 18 units 0-19
Abs, IgA
Deamidated Gliadin 18 units 0-19
Abs, IgG
t-Transglutaminase (tTG) <2 U/mL 0-3
IgA
t-Transglutaminase (tTG) 5 U/mL 0-5
IgG
Endomysial Antibody Negative
IgA
Immunoglobulin A, Qn, 168 mg/dL 91-414
Serum

 

-------------

 

Doctor (rheumatologist yesterday) said my levels came down too fast. That with celiac's those numbers should still be worse.

 

I feel lost!

 

~Julie

 

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Systemic lupus can cause many GI complications, (the list is very long) but I cannot find any articles that support the claim that lupus CAUSES blunting of the villi except this one:

 

 
"Protein-losing enteropathy (PLE) is another
condition of the small bowel associated with SLE.
It is characterized by signifi cant hypoalbuminemia
and diarrhea without proteinuria. The clinical
manifestations are a result of villous atrophy with

infl ammatory infi ltrates and submucosal edema.".

 

It's a PDF file from a Pub med article but it would not allow me access to link it, sorry.

 

BUT THIS DOES NOT MEAN THAT YOU DO NOT HAVE CELIAC. 

If you had a positive celiac blood panel and a positive celiac biopsy and were told you have Celiac, then you have Celiac. I cannot believe any doctor would

suggest otherwise.

 

Your blood panel is good because you are dietary-compliant.  The numbers are supposed to come down. It takes a few months to years, depending on the patient. So, his assumption is based on nothing factual 

 

If you do have lupus in conjunction with C D, and this happens often, I am afraid, this article may be of interest to you.

They suggest the gluten-free diet will control the symptoms of the gut and control the lupus, but that steroids may be necessary in stubborn cases.

 

http://rheumatology.oxfordjournals.org/content/38/10/917.full

 

IMHO, I would never start a regime of big-guns medications without having blood results back, perhaps even a second opinion from another rheumy and a consult with the GI doctor who diagnosed the celiac in the first place.  But that's just me, okay? 

 

I hope you have a good GI doctor?

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Thank you, Irishheart, for chiming in with your wisdom.  I have been in contact with Celiacandme via PM and I needed all the experts weighing in on this one.  I am aghast that any Rheumy would say this to someone.  I am also going to contact my niece about taking Plaquenil because she is on it for lupus.

 

Celiacandme also complained about recurring diarrhea so if you could recommend a good probiotic for this specifically, I would much appreciate it.  I forgot to do that as I was gobsmacked and at a loss for words over the Rheumy statements about celiac panels.......I know, I know, I am rarely at a loss for words.  ;)

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Thank you, Irishheart, for chiming in with your wisdom.  I have been in contact with Celiacandme via PM and I needed all the experts weighing in on this one.  I am aghast that any Rheumy would say this to someone.  I am also going to contact my niece about taking Plaquenil because she is on it for lupus.

 

Celiacandme also complained about recurring diarrhea so if you could recommend a good probiotic for this specifically, I would much appreciate it.  I forgot to do that as I was gobsmacked and at a loss for words over the Rheumy statements about celiac panels.......I know, I know, I am rarely at a loss for words.  ;)

 

I am pretty gobsmacked myself about a doctor contradicting a solid DX (and like me, you are rarely at a loss for words, my friend) ;)

I have no doubt you have counseled her wisely.

 

For prolonged diarrhea, my GI doc suggests OTC Dairy free CULTURELLE.

For a good multi-strain probiotic, I am liking Florajen3 right now. 

 

Celiacandme, 

Please do not despair. 

 

I had a rheumy "pretty sure" I had ankylosing spondyloarthropy once too and wanted me on high dose methotrexate...I said no... and I am glad I did....he was dead wrong. He was appalled that I questioned his diagnosis.

I also heard "possibly" lupus, MS, diabetes, fibromyalgia, CRPS, and bunch of other things....nope, nope,nope... it was the celiac. It is a great mimic.

 

Let's get all the facts first and go from there. From what you have shared, you are doing everything right thus far.

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I take plaquenil.  I have a positive ANA, low white blood count and low vitamin D level.  I have positive DPG IGg and IGa but no other celiac markers.  Biopsy was negative.  I have mild joint pain, fatigue, dry eyes and mouth and severe constipation.  Plaquenil has helped a lot with pain and fatigue.  Gluten free diet has not helped with constipation but has helped with overall less tummy troubles. I think it may be sjogrens but time will tell.  What are your symptoms that led you to the rhuemmy doctor?

 

Renaye

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Hi celiacandme,

I am Jess. I have not been on here much but your story worries me and I can't help speaking up.

Your abnormally elevated celiac antibodies and endoscopy with villous atrophy mean that you have celiac disease.

There is no scientific evidence that lousy causes villous atrophy, I was unable to come up with even a single case report.

You may have both lupus and celiac disease, but your rheumatologist seems to be misguided.

I was diagnosed as having atypical lupus about 10 years ago but refused the medications because my gut instinct was that the diagnosis was wrong (it was) and although I didn't know that I had untreated celiac at the time, things didn't add up.

I have never heard of a rheumatologist stating lupus medications without at least having the lab tests back to confirm lupus.

Just my 2 cents, I hope that I don't come across as being too bossy or assertive, just that I agree with what others have advised you.

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Sorry guys... I've read all the replies and appreciate them. Normally I'd respond right now but am just not doing well today. Will re-read them and respond tomorrow. Thank you for all the support. I've felt lost all day.

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I'm another who was suspected of having lupus. I had arthralgias, fatigue, positive ANA, a butterfly type rash and many other symptoms. It was all down to celiac disease though. - the symptoms can be surprisingly similar.

Best wishes to you while you wait for your test results. I hope they come back fine.

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Hang in there.  

 

These autoimmune disorders share many common symptoms.  For what it is worth...my daughter was diagnosed with SLE, RA and Fibromyalgia during her teens -- she has since added two more AIs in addition to Celiac Disease.  She was 25 when I was finally diagnosed.  All of her AI symptoms have improved gluten-free.  

 

Take all the time you need.  Ask questions.  Understand the tests the doctors are ordering.  Unfortunately, there is too much unknown within the gastro and rheumy disciplines. 

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Systemic lupus can cause many GI complications, (the list is very long) but I cannot find any articles that support the claim that lupus CAUSES blunting of the villi except this one:

 

 
"Protein-losing enteropathy (PLE) is another
condition of the small bowel associated with SLE.
It is characterized by signifi cant hypoalbuminemia
and diarrhea without proteinuria. The clinical
manifestations are a result of villous atrophy with

infl ammatory infi ltrates and submucosal edema.".

 

It's a PDF file from a Pub med article but it would not allow me access to link it, sorry.

 

BUT THIS DOES NOT MEAN THAT YOU DO NOT HAVE CELIAC. 

If you had a positive celiac blood panel and a positive celiac biopsy and were told you have Celiac, then you have Celiac. I cannot believe any doctor would

suggest otherwise.

 

Your blood panel is good because you are dietary-compliant.  The numbers are supposed to come down. It takes a few months to years, depending on the patient. So, his assumption is based on nothing factual 

 

If you do have lupus in conjunction with C D, and this happens often, I am afraid, this article may be of interest to you.

They suggest the gluten-free diet will control the symptoms of the gut and control the lupus, but that steroids may be necessary in stubborn cases.

 

http://rheumatology.oxfordjournals.org/content/38/10/917.full

 

IMHO, I would never start a regime of big-guns medications without having blood results back, perhaps even a second opinion from another rheumy and a consult with the GI doctor who diagnosed the celiac in the first place.  But that's just me, okay? 

 

I hope you have a good GI doctor?

Thank you, IrishHeart for sharing the article. I called my GI doc yesterday. Her nurse called me back today. She basically said that she was fine with me starting plaquenil. She said she did not yet receive any rheumatology blood results but would review them when they came in. I'm with you, I know I have celiac disease but definitely left that appt feeling...I still don't know!

Thank you, Irishheart, for chiming in with your wisdom.  I have been in contact with Celiacandme via PM and I needed all the experts weighing in on this one.  I am aghast that any Rheumy would say this to someone.  I am also going to contact my niece about taking Plaquenil because she is on it for lupus.

 

Lisa - have you heard anything back from your niece?

 

I am pretty gobsmacked myself about a doctor contradicting a solid DX (and like me, you are rarely at a loss for words, my friend) ;)

I have no doubt you have counseled her wisely.

 

For prolonged diarrhea, my GI doc suggests OTC Dairy free CULTURELLE.

For a good multi-strain probiotic, I am liking Florajen3 right now. 

 

Celiacandme, 

Please do not despair. 

 

I had a rheumy "pretty sure" I had ankylosing spondylarthropy once too and wanted me on high dose methotrexate...I said no... and I am glad I did....he was dead wrong. He was appalled that I questioned his diagnosis.

I also heard "possibly" lupus, MS, diabetes, fibromyalgia, CRPS, and bunch of other things....nope, nope,nope... it was the celiac. It is a great mimic.

 

Let's get all the facts first and go from there. From what you have shared, you are doing everything right thus far.

I need to try the culturelle. It's the 2nd time it's been mentioned on one of my threads here. Thank you. I guess my confusion is that my celiac numbers are better but my symptoms, all of them, stomach/rheumatology type are worse. I'm struggling big time.

I take plaquenil.  I have a positive ANA, low white blood count and low vitamin D level.  I have positive DPG IGg and IGa but no other celiac markers.  Biopsy was negative.  I have mild joint pain, fatigue, dry eyes and mouth and severe constipation.  Plaquenil has helped a lot with pain and fatigue.  Gluten free diet has not helped with constipation but has helped with overall less tummy troubles. I think it may be sjogrens but time will tell.  What are your symptoms that led you to the rhuemmy doctor?

 

Renaye

Renaye - what is the plaquenil for? Lupus or something else? Did the rheumatologist put you on it just based on your positive ANA? Do you know which pattern your ANA is or any other markers you are positive for? (I'm speckled pattern, high centromere, low C4, high Hex Phase Phospho Neut, high PTT Patient (PAT)

Hi celiacandme,

I am Jess. I have not been on here much but your story worries me and I can't help speaking up.

Your abnormally elevated celiac antibodies and endoscopy with villous atrophy mean that you have celiac disease.

There is no scientific evidence that lousy causes villous atrophy, I was unable to come up with even a single case report.

You may have both lupus and celiac disease, but your rheumatologist seems to be misguided.

I was diagnosed as having atypical lupus about 10 years ago but refused the medications because my gut instinct was that the diagnosis was wrong (it was) and although I didn't know that I had untreated celiac at the time, things didn't add up.

I have never heard of a rheumatologist stating lupus medications without at least having the lab tests back to confirm lupus.

Just my 2 cents, I hope that I don't come across as being too bossy or assertive, just that I agree with what others have advised you.

What does atypical lupus mean? Not at all (too bossy!) Thank you for taking the time to chime in!

I'm another who was suspected of having lupus. I had arthralgias, fatigue, positive ANA, a butterfly type rash and many other symptoms. It was all down to celiac disease though. - the symptoms can be surprisingly similar.

Best wishes to you while you wait for your test results. I hope they come back fine.

Thank you.

Hang in there.  

 

These autoimmune disorders share many common symptoms.  For what it is worth...my daughter was diagnosed with SLE, RA and Fibromyalgia during her teens -- she has since added two more AIs in addition to Celiac Disease.  She was 25 when I was finally diagnosed.  All of her AI symptoms have improved gluten-free.  

 

Take all the time you need.  Ask questions.  Understand the tests the doctors are ordering.  Unfortunately, there is too much unknown within the gastro and rheumy disciplines. 

Is your daughter on medication for SLE, RA, etc?

 

 

--------------------------------

 

I guess my biggest thing is knowing my celiac numbers have gone down, I am 5 months on the diet, and my symptoms are getting worse. Completely fatigued, raynaud's type symptoms, rosey cheeks (rash like under my skin not above), issues with my veins, chest pain, pleurisy, joints in 4 fingers/left knee/left shoulder not right, painful, sensitive to sun, chilled to the bone, diarrhea still each morning. Upper back and neck pain. Symptoms seem to be worse around ovulation and cycle time, too.

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Thank you.

Is your daughter on medication for SLE, RA, etc?

 

She is currently off most of her medication except for some of her pain meds -- she has been on every combo of meds for pain and inflammation there is over the past twenty years.

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I have a positive ANA 1:320 with homogenus/speckled pattern.  Referred to rhuemmy by gastro after he tested for celiac and ANA.  By the time I got in to rhuemmy, I was an emotional mess thinking I was going to drop dead anyday.  I was extremely fatigued, have telangestias on my hands and face, possible minor raynaulds, cold all the time, mild joint pain, dry eyes and mouth for years and family history of autoimmune disease. My diagnosis now is sicca but he believes it is secondary to something else that has not raised his ugly head yet.

 

Did your doctor mention getting a baseline eye assessment before starting plaquenil?  That is a must.  Plaquenil takes 6 months or more to relieve fatigue.  It is a mild drug compared to the rest.  It also can slow down progression, especially of the organs, according to my doctor. I have been on it since August 2011 and keep getting better.  I don't regret making that decision because I was not functioning at the time and have to raise two children and go to work daily.  Could it just be celiac?  For me, I doubt it, not with my family history.   

 

Don't be afraid to slow the process down and wait for bloodwork or get a second opinion.  Hope you find answers soon.

 

Renaye

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She is currently off most of her medication except for some of her pain meds -- she has been on every combo of meds for pain and inflammation there is over the past twenty years.

 

 

That is great to hear she is off most of her medication! Sounds like she has been through a lot.

 

I have a positive ANA 1:320 with homogenus/speckled pattern.  Referred to rhuemmy by gastro after he tested for celiac and ANA.  By the time I got in to rhuemmy, I was an emotional mess thinking I was going to drop dead anyday.  I was extremely fatigued, have telangestias on my hands and face, possible minor raynaulds, cold all the time, mild joint pain, dry eyes and mouth for years and family history of autoimmune disease. My diagnosis now is sicca but he believes it is secondary to something else that has not raised his ugly head yet.

 

Did your doctor mention getting a baseline eye assessment before starting plaquenil?  That is a must.  Plaquenil takes 6 months or more to relieve fatigue.  It is a mild drug compared to the rest.  It also can slow down progression, especially of the organs, according to my doctor. I have been on it since August 2011 and keep getting better.  I don't regret making that decision because I was not functioning at the time and have to raise two children and go to work daily.  Could it just be celiac?  For me, I doubt it, not with my family history.   

 

Don't be afraid to slow the process down and wait for bloodwork or get a second opinion.  Hope you find answers soon.

 

Renaye

How often do you go to your rheumatologist? How often do they retest you?

 

My doctor mentioned seeing my eye doctor about 2-3 weeks after starting the medication. I was at my eye doctor's in October. Perhaps that was soon enough for baseline exam? Not sure.

 

Thank you - I keep watching for my blood work results to trickle in.

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I see my rhuemmy doc every 6 months and have blood drawn one month prior to the appointment.  I also have an opthamalogist instead of an optomistrist.  This doctor will do a more in-depth exam.  The exam takes several hours and you get to look at cool pictures of your eyeball.  Plaquenil has a low risk of retinal damage with increasing years of use.  My eye doctor has only seen one problem in his career with damage from this drug.  So it is important to have yearly check ups with a qualified eye doctor that knows the risks of plaquenil.  Hope this is helpful.  Hope you find relief to your fatigue.  I know it can be debilitating. 

 

Renaye

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I have a positive ANA 1:320 with homogenus/speckled pattern.  Referred to rhuemmy by gastro after he tested for celiac and ANA.  By the time I got in to rhuemmy, I was an emotional mess thinking I was going to drop dead anyday.  I was extremely fatigued, have telangestias on my hands and face, possible minor raynaulds, cold all the time, mild joint pain, dry eyes and mouth for years and family history of autoimmune disease. My diagnosis now is sicca but he believes it is secondary to something else that has not raised his ugly head yet.

 

Did your doctor mention getting a baseline eye assessment before starting plaquenil?  That is a must.  Plaquenil takes 6 months or more to relieve fatigue.  It is a mild drug compared to the rest.  It also can slow down progression, especially of the organs, according to my doctor. I have been on it since August 2011 and keep getting better.  I don't regret making that decision because I was not functioning at the time and have to raise two children and go to work daily.  Could it just be celiac?  For me, I doubt it, not with my family history.   

 

Don't be afraid to slow the process down and wait for bloodwork or get a second opinion.  Hope you find answers soon.

 

Renaye

Renaye.....telling someone they have "sicca" for a diagnosis is like telling a Celiac they have IBS.  It's not a diagnosis.  If your eyes and mouth are that dry, then you most likely have Sjogren's. You can test negative on the SJogren's antibodies even though you have the disease.  Have you tried Restasis eye drops?  For many people, including myself, these are immensely helpful in helping with the inflammation in your eyes and dryness, along with the gluten-free diet.

 

Have you been diagnosed with Celiac?  Are you following a gluten-free diet, regardless of any diagnosis or absence of one?  If this Rheumy thinks that the dry eyes are secondary to another problem that hasn't reared it's ugly head, that is the attitude of most of these people. Celiac is the leading winner with all these autoimmune problems, as the underlying cause.  My family is loaded with AI problems and Celiac symptoms.  I am the only one getting better, symptom-wise, from the gluten-free diet.....the rest won't be tested or consider it so they will never know how well you can be on the gluten-free diet, without taking a lot of meds.

 

At my last blood draw recently, I had my ANA re-checked and it has gotten better.  It was 1:160 and now it is the same as yours, 1:320. This, coupled with the speckled pattern, is common to Sjogren's so I am not sure why they don't say Sjogrens, in your case.  If it is both dry eye and mouth, then it's most likely Sjogren's.

 

I am glad you are feeling better!  That is good news.  :)

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Speckled 1:640 here....been there since just prior to celiac diagnosis - good to hear it can improve!

 

I always think of that test around this time of year when I see the speckled easter egg dye kits in the store ;)

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I agree, I have no official diagnosis of sjogrens or celiac.  Biopsy was negative but DGP IgG and DGP IgA were positive.  Sjogren's can tag along with celiac, lupus, scleroderma or others.  Hopefully I won't develop any more auto immune friends.  I am thankful that my doctor is treating symptoms.  I have been on restasis but had a possible allergy to it and now have eye plugs. 

 

Renaye

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If your DGP testing was positive, you have a diagnosis.  You just were lucky enough to find out before the major intestinal damage set in enough for them to find it.  Looking at your signature line, you have all the symptoms of true Celiac Disease.

 

I don't think these diseases just tag along.  I think when someone has undiagnosed celiac and years of inflammation sets in, your immune system does not disciminate against  damaging other organs.  And which ones they go to and which AI diseases you pop with depends on a number of things and I'm sure genetics plays a role in it all.  Inflammation is the start of any disease process.  This why I really have problems with Rheumy's.....they overthink everything and don't give enough credence to Celiac when patients present with multiple AI problems.  My niece's Rheumy hasn't gone any further with testing for Celiac and is being an enabler to her denial mode about it, all the while she is the poster child for AI disease. Plus, he really doesn't think she has it because she doesn't look sick.  :blink:   People pay for this advice?

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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