Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

New , Looking For Info

Rach7982

Recommended Posts

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 !

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,079
    • Most Online (within 30 mins)
      10,442
    jchamp080
    Newest Member
    jchamp080
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...