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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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    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
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