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Hi everyone!  My name is Tara.  I've been having GI symptoms most of my life, but things got dramatically worse at the onset of my pregnancies.

Current diagnoses:

Hashimoto's Thyroiditis

SIBO

 

I was recently tested for Celiac Disease:

Everything looked good except I have IgA deficiency : 35

And my gliadin (deamidated) IgG serum was high: 34.8

I also was screened for the Celiac genes, which I have....

I know the standard is endoscopic biopsy of the duodenum, but I was wondering what others thought.  Could this be Celiac Disease or more likely to be non-celiac gluten sensitivity or nothing at all?

Thank you for your insight!

Tara

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Welcome!  

I would recommend a biopsy.  Yep, you have a positive on the antibodies panel and that warrants an endoscopy.  Keep eating gluten until all testing is complete.  

http://www.cureceliacdisease.org/screening/

?

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4 minutes ago, cyclinglady said:

Welcome!  

I would recommend a biopsy.  Yep, you have a positive on the antibodies panel and that warrants an endoscopy.  Keep eating gluten until all testing is complete.  

http://www.cureceliacdisease.org/screening/

?

Thank you!!!  I had a endoscopy and colonoscopy over a year ago due to chronic constipation and they did biopsies that I believe came back negative.  However, prior to that procedure I had been gluten free for about 8 months (due to sensitivities in my breastfeeding baby.  I removed dairy, wheat and soy).  Is that biopsy still reliable or do I need a repeat endoscopy??  

Thanks, again!!

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All the tests for celiac (except gene testing which can only rule out celiac disease and not diagnose it) require a person to be in a gluten diet.  The time is 8 to 12 weeks for the blood test and four weeks for the endoscopy.  I would say a repeat is needed.  Make sure they take up to six samples.  

Humm...were they looking for celiac disease during your first endoscopy? A GI should know and confirm that you were eating gluten daily before taking ordering the endoscopy.  You might need a more celiac-savvy GI!  

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5 minutes ago, cyclinglady said:

All the tests for celiac (except gene testing which can only rule out celiac disease and not diagnose it) require a person to be in a gluten diet.  The time is 8 to 12 weeks for the blood test and four weeks for the endoscopy.  I would say a repeat is needed.  Make sure they take up to six samples.  

Humm...were they looking for celiac disease during your first endoscopy? A GI should know and confirm that you were eating gluten daily before taking ordering the endoscopy.  You might need a more celiac-savvy GI!  

No, I don't think he was looking for celiac.  I'm not quite sure what he was looking for.  I do have a twin sister (fraternal) with crohn's colitis, so perhaps that.  I have no idea how many  biopsies he took.  He's a surgeon more than practitioner, so I actually switched to another GI.  He is the one that tested me for Celiac Disease with the blood panel and gene testing.  However, he is out of the office until the 24th, so I got my results from a nurse who, unfortunately, didn't seem to know very much.  I know my current GI discussed wanting an endoscopy and then I told him about the one I had last year and he never got back to me after that.  They were still waiting on the gene tests.  

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I would still recommend the endoscopy.  A firm diagnosis can help : 1) maintain the gluten-free diet and 2) allow for your kids (and all first-degree relatives) to get tested easily.  You still can develop other autoimmune issues -- you already have Hashi's like me, so Crohn's is always a possibility and they can check for that as it might have developed in a year.  Your sister might even have celiac disease.  Has she been tested for celiac disease?  I am trying to get my newly diagnosed with Crohn's niece to go gluten-free.  She has tested negative to celiac, but it could develop later.  In the meantime a gluten-free diet may help her with Crohn's flare-ups.  She, BTW, was diagnosed via pill camera.  

http://medicalxpress.com/news/2016-10-links-protein-wheat-inflammation-chronic.html

The gene test?  Some 30% of the poulation carries the genes, yet only a very few go on to develop celiac disease.  

Get and keep all lab and test results.  You should be 100% in charge of your health and your kid's health!  

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Initially I had mildly elevated blood work and a normal  Endoscopy last winter.  Since July I kept telling my doctors that I had upper abdominal pain and nausea and because I was scoped already last year they pretty much told me it was in my head. After 24 hours of D recently and a bunch of other crazy symptoms (heart palps, near syncope, numbness) they scoped again and found inflammation in the small intestine and a positive DGP. 

So I would do the scope again for sure. 

 Of course my response is coming from someone who literally just hours ago was not believing celiac is what is wrong with me. Probably because for so many months I was told it was in my head!

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My question is did they specifically do biopsies looking for celiac? You need to get copies of all your health records & especially labs/pathology. They may have only done biopsies for Crohn's. When they send those to pathology they state what they're looking for & rarely does the pathologist look for anything other than what the doc has stated he thinks it might be.

 

BTW, there is yet no test for non celiac gluten sensitivity and those who have NCGS do not test positive on the celiac serum so your high DGP IgG would be positive for celiac not NCGS.

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21 hours ago, cyclinglady said:
21 hours ago, cyclinglady said:

I would still recommend the endoscopy.  A firm diagnosis can help : 1) maintain the gluten-free diet and 2) allow for your kids (and all first-degree relatives) to get tested easily.  You still can develop other autoimmune issues -- you already have Hashi's like me, so Crohn's is always a possibility and they can check for that as it might have developed in a year.  Your sister might even have celiac disease.  Has she been tested for celiac disease?  I am trying to get my newly diagnosed with Crohn's niece to go gluten-free.  She has tested negative to celiac, but it could develop later.  In the meantime a gluten-free diet may help her with Crohn's flare-ups.  She, BTW, was diagnosed via pill camera.  

http://medicalxpress.com/news/2016-10-links-protein-wheat-inflammation-chronic.html

The gene test?  Some 30% of the poulation carries the genes, yet only a very few go on to develop celiac disease.  

Get and keep all lab and test results.  You should be 100% in charge of your health and your kid's health!  

Thank you again for your response, guidance and wisdom!  I apologize for the delay in response.  I have three little girls that keep me really busy.  My sister has not been tested for Celiac.  She was diagnosed with Crohn's when we were 19, we're 35 now.  

My main motivation in figuring this all out is really my children.  They're almost 5, 3.5 and almost 2 and I want them to be healthy.  Currently, my three year old has been suffering with constipation since she was on solids at 6 months.  I have an appointment with a pediatric GI in December -- I really wish it were sooner.  She also has high liver enzymes.  I've been worried about her for a while as she seems to be tired all of the time, sweats a great deal, and she's falling of the weight (3%) and height (2%) charts.  Her pediatrician just keeps saying it's because I'm small (5'2", 110 lbs) but I'm not convinced and I've been fighting to get answers for the better part of a year and a half.  My oldest struggles with constipation as well and my youngest alternates between constipation and loose stools.

Thanks again for writing and listening (reading).  I've been frustrated for a while.  I want my kids to be healthy and I desperately want to feel better, as well.

Oh, I forgot to ask, what are your symptoms.  I've been seeing my GP for over a year trying to get to the bottom of my symptoms and I'm wondering if they can be attributed to Celiac Disease, if in fact I have it.

severe night sweats (nine months straight, two months off and on, and now continual again)

overwhelming fatigue

abdominal pain, bloating, constipation

hair falling out

headaches

Thanks again!

 

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You symptoms could be celiac related.  It's hard to say, since there are over 200 symptoms attributed to celiac disease.  All that you listed could be celiac disease....or some could be related to Hashi's.  I had some pretty severe night sweats.  You might want to get your thyroid and other horomones (e.g. estrogen, etc.) checked.  These can flucuate like crazy during a thyroid flare-up or celiac flare-up.  Who knows!  My thyroid went crazy swinging from hypo to hyper in a matter of days.  Drove my doctor nuts.  It all settle when I went through menopause at the very same time I was diagnosed with celiac disease.  

My symptom was primarily anemia.  No tummy issues.  But I had lots of little things that I blamed on menopause, thyroid and aging.  Most of those have gone away on a gluten free diet.  Even my enlarged thyroid is normal size again and my nodules have disappeared!  It's like my whole immune system has settled down --- as long as I avoid gluten!  Then all bets are off!   I did develop osteoporosis along the way.  I fractured my vertebrae doing nothing two months after my celiac disease diagnosis.  

Like you,  I'm 5" 2".  Wait.  Those fractures!  I'm now just 5' 1".  :(  I'm little.  My kid was really little too.  She was always under 5% on the weight, but her height was 50%.  I would think that both height and weight being low, could very well be a sign of celiac disease.  I didn't worry because my kid was at least normal in height and her head was normal as an infant.  Her Ped kept trying to fatten her up, but I refused.  I fed her healthy things.  By 1st grade, she was in the 25% range for weight.  Now at 15, she's at 50% and an athlete (track and water polo).  

Constipation and diarrhea are common symptoms of celiac disease.  Not everyone has to be wasting away either!  Hum...my cholesterol levels were always super low.  My old GP used to pat me on the back.  Little did I know that it was another sign of celiac disease.  Those liver enzymes?  Happens a lot with folks who have celiac disease.   

I would get your kids screened.  Remember, celiac disease can develop even when you are 90 years old!  So, I test my kid every few years even if she's symptom free.  She's gluten light (our house is gluten-free), but I manage to give her prepackaged gluten food in her lunch.  If she's lucky, her friends make her sandwiches!  When I am getting ready to test her, I make sure she gets plenty of gluten.  Funny thing is that she'll take a gluten-free homemade cake over store bought gluten-filled cake.  She also likes her burgers "protein style" meaning they are lettuce wrapped.  

If your biopsy shows up negative, ask for a pill camera.  Again, that's how my 19 year old niece (same age as your sister) was diagnosed.  Something is wrong.  Don't settle.  Keep advocating for yourself and your kids! 

Enjoy your little ones.  

 

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On 10/18/2016 at 9:02 PM, squirmingitch said:

My question is did they specifically do biopsies looking for celiac?

Thank you so much for your response!  I'm actually not sure what the GI was looking for.  I had not had any labs prior for Celiac Disease.   My major complaint was extreme bloating, fatigue, abdominal pain and major constipation.  I also had to do a defecogram, sitz test and some other test.  He didn't seem to think I had Crohn's because I was constipated so I'm not sure that he was looking for that.  He took biopsies I believe because he saw inflammation (gastritis and duodenitis), but I'm unaware of how many biopsies he took and from where.  The histology came back normal is all I was told.  He wouldn't give me any other information.

Again, thank you!

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On 10/18/2016 at 8:54 PM, ironictruth said:

Initially I had mildly elevated blood work and a normal  Endoscopy last winter.  Since July I kept telling my doctors that I had upper abdominal pain and nausea and because I was scoped already last year they pretty much told me it was in my head. After 24 hours of D recently and a bunch of other crazy symptoms (heart palps, near syncope, numbness) they scoped again and found inflammation in the small intestine and a positive DGP. 

So I would do the scope again for sure. 

 Of course my response is coming from someone who literally just hours ago was not believing celiac is what is wrong with me. Probably because for so many months I was told it was in my head!

Thank you for sharing your story with me!  I'm glad that you know for sure what is happening in your body - please keep me posted with how you feel as you progress on your journey!!  

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