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Rach7982

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Rach7982 Newbie
Rach7982
Posted

Hello,

I have been having health problems for a few years with no relief in sight.  I am unable to eat a meal without pain and sever bloating. I am pretty much in constant pain. I get headaches after I eat and my arms feel extremely heavy (weird , I know). I have had every test and scan done, including the blood test for celiac. Always the results are negative. A year ago I also started breaking out in an extremely itchy rash on my elbows. Doctor couldn't figure out what is was.  Needless to say I am tired of feeling sick all the time.

The other day I saw a wonderful nurse practitioner, she took the time to actually talk with me and go over all the lab work and tests I have had done in the last couple years.  She told me everything was pointing towards celiac even though my tests had been negative. She noticed when looking at my blood work that I was IGA deficient.  She said this could have resulted in  a negative results on the blood test.  She ordered some more labs and genetic testing.  I was just curious if any of this was similar to anyone else's case.  I have been suffering for the last  7 years and it seems no matter what I do nothing helps.  Besides these issues I am fairly healthy, I work out and am in my early thirties , I shouldn't be this miserable. Does anyone have any experience with the genetic testing or a false positive blood test?

 

Thanks !

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nvsmom Community Regular
nvsmom
Posted

About 1/20 celiacs are deficient in IgA which is higher than the regular population. It is not a great cause for concern but it does affect some celiac tests like the tTG IgA, DGP IgA, and EMA IgA. You'll need to run the IgG versions of those tests and hope for the best - IgG based tests have more false negatives.

You could also ave an endoscopic biopsy done; a minority of celiacs have negative blood tests but positive biopsies.

The ash could be dermatitis herpetiformis. That can be checked by ave the skin beside the rash biopsied. Check out the forum on dh for more info.

There is also the chance that you have non-celiac gluten intolerance (NCGI) which as ALL of the same symptoms as celiac disease except the villi damage (so blood tests are negative). A gluten-free trial of 3-6 months is the best way to diagnose NCGI.

I hope you find answers. Many of us were undiagnosed for ears or decades so we understand your frustration. :(

Welcome to the board.

JustCricket Newbie
JustCricket
Posted

Hi, Rach! I was thinking Dermatitis Herpetiformis too. 

 

I think this all points to a possible celiac diagnosis, too (not a doctor, however). Hopefully you'll find out so you can start working toward getting better!

 

Welcome to the group! I'm new here, too. :)

GFinDC Veteran
GFinDC
Posted

HI Rach,

 

I think it's kinda rare for a test to be a false positive.  False negatives are more common.  The testing for DH (dermatitis herpetiformis) involves taking a small sample of skin next to the rash and testing it for antibodies.  

I am not sure if people who are IgA deficient can get DH though.  That's kind of a question in my mind.  Well, the good thing about a DH diagnosis is it confirms celiac disease also.  So it is something to look into more anyway.

Rach7982 Newbie
Rach7982
Posted
  • Author

HI Rach,

 

I think it's kinda rare for a test to be a false positive.  False negatives are more common.  The testing for DH (dermatitis herpetiformis) involves taking a small sample of skin next to the rash and testing it for antibodies.  

I am not sure if people who are IgA deficient can get DH though.  That's kind of a question in my mind.  Well, the good thing about a DH diagnosis is it confirms celiac disease also.  So it is something to look into more anyway.

LOL , I meant false negative, sorry ! Sometimes my brain doesn't work ..thanks for the info . Hopefully I will get some answers soon. I am tired of being worn out and sick . My doctor also mentioned something about MS which is scary. My arms and hands get really heavy and tingly after I eat anything. Hopefully I will find relief soon !

gxn4168 Newbie
gxn4168
Posted

I am new too and totally confused.  in june I was diagnosed with diverticulitis and in july I was told I had diabetes type 2 a1c was 7.  since then I have endlessly searched on line because I had some diverticulits symptoms but not all lower left quadrant pain, diharrea  and abnormal bowel  bleeding etc.

I have altered my diet significantly and write down everything I eat and any symptoms I have ..  I started to notice tingling in my left pinkie and ring finger after any meal with bread. so that lead me to celiac disease but could I have diverticulitis and celiac and is celiac the same as glutten allergy?? 

GF Lover Rising Star
GF Lover
Posted

Hi GXN and Welcome to the Forum. 

 

A diagnosis of Diverticulitis when confirmed with a CT scan is extremely accurate.  It involves the colon and the large intestine but can rarely be in the small intestine also.  Celiac Disease involves the Small intestine and is an Autoimmune Disease.  A gluten allergy is different from Celiac Disease but may have very similar symptoms.  Celiac can be tested for by blood test and endoscopy but you must keep eating gluten for it to be accurate.  How are you treating the Diverticulitis?  Do you have other Autoimmune Diseases?  I really don't think the tingling in your fingers screams Celiac Disease but, of course, you can get tested to rule it out. 

 

Colleen

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GFinDC Veteran
GFinDC
Posted

LOL , I meant false negative, sorry ! Sometimes my brain doesn't work ..thanks for the info . Hopefully I will get some answers soon. I am tired of being worn out and sick . My doctor also mentioned something about MS which is scary. My arms and hands get really heavy and tingly after I eat anything. Hopefully I will find relief soon !

 

Ah, got it Rach!  We call that brain fog around here generally.  Happens to quite a few of us in fact.  Once you are done with the doctors it is perfectly ok to try the gluten-free diet for a few months and see what happens.  With NCGI there are no tests yet, so the best test is to try the diet for a while.  Since you are having symptoms after eating it makes sense to think there is something going on with your digestion.

 

 

I am new too and totally confused.  in june I was diagnosed with diverticulitis and in july I was told I had diabetes type 2 a1c was 7.  since then I have endlessly searched on line because I had some diverticulits symptoms but not all lower left quadrant pain, diharrea  and abnormal bowel  bleeding etc.

I have altered my diet significantly and write down everything I eat and any symptoms I have ..  I started to notice tingling in my left pinkie and ring finger after any meal with bread. so that lead me to celiac disease but could I have diverticulitis and celiac and is celiac the same as glutten allergy?? 

 

Hi gxn,

 

Yes, you can have more than one medical condition at the same time.  But since celiac disease can have 300 different symptoms, it is very easy to be mis-diagnosed for a while.  in fact, it is more typical to be mis-diagnosed than not.

gxn4168 Newbie
gxn4168
Posted

Hi GXN and Welcome to the Forum. 

 

A diagnosis of Diverticulitis when confirmed with a CT scan is extremely accurate.  It involves the colon and the large intestine but can rarely be in the small intestine also.  Celiac Disease involves the Small intestine and is an Autoimmune Disease.  A gluten allergy is different from Celiac Disease but may have very similar symptoms.  Celiac can be tested for by blood test and endoscopy but you must keep eating gluten for it to be accurate.  How are you treating the Diverticulitis?  Do you have other Autoimmune Diseases?  I really don't think the tingling in your fingers screams Celiac Disease but, of course, you can get tested to rule it out. 

 

Colleen

thanks for the info . right now I am going by the mayo clinic low fiber low residue diet for diverticulitis to give myself time to heal. it seems to be working. i don't as far as i know have any other autoimmune diseases

GF Lover Rising Star
GF Lover
Posted

GXN,

 

I'm glad that the Mayo diet is working.  It can take quite some time to heal.  Good luck to you.

 

Colleen

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