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Still testing positive after being gluten free for one year ?!!

Shireen32
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Shireen32 Rookie
Shireen32
Posted

Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ? 

I had tests recently and this is what they say :Endomysial abs (IgA) -Positive 

TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml

What does this mean pls ???

How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms . 

 I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ?

The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  .

Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .



 

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knitty kitty Grand Master
knitty kitty
Posted

@Shireen32, 

Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.  

No, it's too early to call it refractory.

What are you eating?  Please tell us more than meat and veg.

Do you consume dairy?

Do you consume processed gluten free foods?  

Are you taking any prescription medications, herbal supplements, vitamins and minerals?  

Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

  • 9 months later...
Jenn D Rookie
Jenn D
Posted

Hi. Did your ema levels ever go negative? My son is 2 years in gluten free and they are still positive.  I'm scared he has refractory celiac disease. Please if anyone has any info greatly appreciate it. His ttg is 3 which is considered normal.

Scott Adams Grand Master
Scott Adams
Posted

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

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    • knitty kitty
      any advice would be helpful

      By knitty kitty · Posted

      @Jane07, welcome to the forum! Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients is common in Celiac Disease.  Supplementing with vitamins and minerals that are commonly low in the newly diagnosed can help immensely with recovery.   Vitamin D is frequently low.  Vitamin D helps regulate the immune system and calm it down.  The eight essential B vitamins help repair and maintain our body's health.  Magnesium, calcium, zinc and other minerals are necessary, too.  Vitamin C helps, as well.  Benfotiamine, A form of Thiamine, has been shown to promote intestinal healing. Are you still consuming dairy?  Eliminating dairy may bring some improvements.  Have you tried the low histamine Autoimmune Protocol diet?  Developed by a Celiac, Dr. Sarah Ballantyne, the AIP diet can improve symptoms while healing.  
    • knitty kitty
      What would a diagnosis tell me?

      By knitty kitty · Posted

      Welcome to the forum! A blood test for Celiac looks for the amount of antibodies your body is producing in response to gluten.  An endoscopy looks at the damage done by the antibodies attacking the villi lining the intestines.   When you have a cold or infection, antibodies are made that attack the foreign invader.  In Celiac Disease, our immune system recognizes gluten as a foreign invader and launches antibodies against it.  However, the gluten particles resembles the same structural components in our body cells.  As a result, the anti gluten antibodies attack our own cells, causing damage like flattening villi in the intestines and also potentially attacking vital organs like the thyroid, the pancreas, the brain, and the heart.   Gluten itself does not stay in the body for years.  The anti gluten antibodies stay in the body for years.  Our bodies remember gluten and continue making antibodies against gluten which continue to damage our bodies for years.  Eventually, if not triggered by gluten ingestion for two years or longer, our bodies may go into remission and stop producing the antibodies and thus end the inflammation and damage. You should be afraid.  You should be very afraid.  Consuming gluten accidentally or intentionally can start the while cycle over again from the beginning.  And getting to that state of remission again can take years.   A dietician or a nutritionist can advise you on how to start and sustain a gluten free diet while meeting your nutritional requirements.  We need essential vitamins and minerals to heal and maintain our health.  The gluten free diet can be lacking in essential nutrients unless we eat mindfully.  A nutritionist can teach us which foods will help us meet our nutritional requirements, and help us correct nutritional deficiencies with vitamin and mineral supplements.  
    • cristiana
      UK Member Looking For Help - Recent Test

      By cristiana · Posted

      @LeeRoy83    Hello again.  Picking up on something else you said re: the shock that you may be a coeliac. It may has come as a shock to learn that coeliac disease is a possibility, but if that is the case, although it can be at times a bit of a nuisance not to be able to eat gluten anymore, it has been my experience that most of my friends and acquaintances who have it have adapted to it well, and are thriving.  Although statistically it affects 1 in a 100 people, I know more than that, strangely, so I can see first hand how the diet can make a big difference for most people. In the UK we are blessed with a wonderful selection of gluten free food on sale in the shops, which seems to be ever-increasing, well labelled food packaging making it easier to determine if food contains gluten, a fabulous charity called Coeliac UK who provide a lot of very helpful information, including a gluten free food app and guide that you can take shopping with you, and good follow-up care provided by the NHS.   But that's for another day - IF you have indeed got Coeliac Disease.   Do meet up with your GP, take a list of questions to ask, and then if he wants you to take the coeliac diagnosis a step forward do let us know if we can be of help  - we can walk with you every step of the way. Cristiana
    • trents
      Elimination diet think I may be Gluten tolerant next steps to get tested? Questions

      By trents · Posted

      No. That is, unless the dietician themself has a gluten disorder or is managing a close family member who does and therefore is immersed in it daily so as to be up on the nuances of eating gluten free. Otherwise, they just give you very general information which you can get online.  
    • trents
      UK Member Looking For Help - Recent Test

      By trents · Posted

      Yes, a very cryptic and uninformative lab result report indeed! But it does seem like this is typical for the UK. It's almost like the "professionals" in that healthcare system don't want you to try and figure anything out for yourself.
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