Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.