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Crazy in Kanata

Normal celiac panel, slightly low ferritin

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Hi, this is my first post. I am wondering how to proceed. I tried going off gluten because I was diagnosed with Morphea and I read it might help. To my surprise, it cleared up a bunch of other symptoms big time. Then I read about celiac and found out I should not have stopped eating gluten if I wanted to get tested, haha. So I was only off two weeks and I did a four week gluten challenge. My results came back mostly normal:

Deamidated Gliadin IgG antibodies 9 U/mL, <10 is negative range

Transglutaminase IgA antibodies 5 EU/mL, <20 is negative, 20-25 borderline, >25 is positive

B12 is 331 pmol/L, >220 is normal

Ferritin 17 ug/L, 12-109 is normal

TSH 2.83 mIU/L, 0.35-5 is normal

IgA Immunoglobulin 2.67 g/L, 0.69-3.82 is normal

My CBC had abnormal (high) white blood cell count (14.0 where 3.2-9.4 is normal) and WBC neutrophils (10.2 where 1.4-6.3 is normal)

Any advice on how I should proceed from here? Should I try and push for the endoscopy or just take the diagnosis of NCGS?

 

     
Edited by Crazy in Kanata

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6 hours ago, Crazy in Kanata said:

Hi, this is my first post. I am wondering how to proceed. I tried going off gluten because I was diagnosed with Morphea and I read it might help. To my surprise, it cleared up a bunch of other symptoms big time. Then I read about celiac and found out I should not have stopped eating gluten if I wanted to get tested, haha. So I was only off two weeks and I did a four week gluten challenge. My results came back mostly normal:

Deamidated Gliadin IgG antibodies 9 U/mL, <10 is negative range

Transglutaminase IgA antibodies 5 EU/mL, <20 is negative, 20-25 borderline, >25 is positive

B12 is 331 pmol/L, >220 is normal

Ferritin 17 ug/L, 12-109 is normal

TSH 2.83 mIU/L, 0.35-5 is normal

IgA Immunoglobulin 2.67 g/L, 0.69-3.82 is normal

My CBC had abnormal (high) white blood cell count (14.0 where 3.2-9.4 is normal) and WBC neutrophils (10.2 where 1.4-6.3 is normal)

Any advice on how I should proceed from here? Should I try and push for the endoscopy or just take the diagnosis of NCGS?

 

     

Your celiac test results are normal.  But four weeks may not be enough time for your body to develop antibodies specific to a gluten exposure.   Celiac centers recommend 8 to 12 weeks for blood tests and only 2 to 4 for an endoscopy to obtain intestinal biopsies. 

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Since you already have one AI issue, maybe you can go directly to an endoscopy.  This is something you need to discuss with your doctor as insurance has a say....ugh!  

Even if negative for celiac disease, I would look to an autoimmune diet that may help relieve your AI flares.  I would encourage you to really rule out celiac disease first, if possible.  

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1 hour ago, cyclinglady said:

Your celiac test results are normal.  But four weeks may not be enough time for your body to develop antibodies specific to a gluten exposure.   Celiac centers recommend 8 to 12 weeks for blood tests and only 2 to 4 for an endoscopy to obtain intestinal biopsies. 

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Since you already have one AI issue, maybe you can go directly to an endoscopy.  This is something you need to discuss with your doctor as insurance has a say....ugh!  

Even if negative for celiac disease, I would look to an autoimmune diet that may help relieve your AI flares.  I would encourage you to really rule out celiac disease first, if possible.  

Thanks for the reply. I am uninsured and Canadian so I don't know how it will go, but I will try to fully rule out celiac. I hate not having answers. I have had a lot of issues for a long time and it's all very frustrating. I'm sick of chronic pain and fatigue and cognitive impairment and a bunch of other little things and I don't know if I can do a challenge again. I just want this all over with. Stick a fork in me, I'm done.

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Well, you can always trial the gluten-free diet, but do it for at least six months.  Act exactly as if you had celiac disease.  Worry about cross contamination and learn to read labels.  

My own hubby did this per the very poor advice from two medical doctors 16 years ago (and we had good insurance!).  The diet worked.  After a year of learning, he has faithfully remained gluten-free.  So, it can be done.  He will say that I have had it much easier with a firm diagnosis.  However, it is not always possible to get that diagnosis. 

The bottom line is to protect your health!  

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