Celiac or gluten intolerant?

[Elineea]

Hello everyone.

So a little background of my story.Last year I had a pletora of very strange symptoms and also some strangr blood work and after that depression which I suspect has to do with something autoimmune.I had continous subfebrile states and daily headaches.My bloodwork showed increases c reactive protein and an antibody AMA for primary billiary chirosis positive. But the problem is I also had rashes on my body, itchiness, loose stools very  frequent,fatigue, racing thoughts .I read a lot of my symptoms corelated to celiac also and maybe gluten ataxia

I did the bloodwork for celiac it was negative.

Every time I ate more gluten my symptoms worsened.

Now a yead has passed.

I suspect a gluten intolerance at least.

My recent bloodwork shows low iron but normal hemoglobin and a slight higher c reactive protein.

I also have memory problems, I can.t remember words,hair loss severe, sometimes sleepiness, and so forth.

I checked thyroid came back ok.

Can anyone relate to my story?

What can I do next?

Edited November 13, 2019 by Elineea

[GFinDC]

Hi Elineea,

You have some options.  You can check if they did the complete celiac disease panel, or just the ttg-IgA screening test.  Some people don't show up positive on that test but do on another antibody test.

You can also wait 6 months and try to get the tests done again.  Maybe the antibody levels will be high enough to show up then.

Or you can go gluten-free now regardless and see if it helps you.  Celiac testing requires us to be eating gluten so if you choose to go gluten-free now you would need to start eating it again for any testing later.  That can be unpleasant if you do have celiac disease.

You can also cut all dairy from your diet to see if that helps symptoms.  People with celiac often have problems digesting dairy.  You can also ask the doc to test your vitamin.mineral levels.  Celiac can cause deficiencies and you may need supplements.

 

[cyclinglady]

GFinDC gave you good advice.  

Your symptoms could be celiac disease or one of many autoimmune disorders (you can have multiple autoimmune disorders).  If you are unable to get the full celiac disease blood panel or an endoscopy, consider trialing the gluten free diet.  You might research the Autoimmune Paleo Diet also.  There have been a few tiny studies concerning this AIP diet.  It seems to help patients with inflammatory bowel disease and it is gluten free.  The tiny study achieved a 78% remission in just six or eight weeks.  

While a firm diagnosis can be useful, feeling better is best.  My husband went gluten free 20 years ago.  Long before my celiac disease diagnosis.  We know that gluten makes him sick.  (He refuses now to go back on gluten to get tested.  Imagine 8 to 12 weeks of intentionally making yourself ill!) 

I personally have altered my gluten free diet to accommodate my other autoimmune disorders.  I am trying to prevent developing a fourth.   A diet avoiding processed foods and individualized to help identify other food intolerances, can help.   This approach has reduced my symptoms.  For example, My GERD from autoimmune gastritis is gone and my thyroid enlargement and nodules have gone.  

I work with my doctors.  We are a team.  While food can help with healing as can reducing stress and exercising, I know that doctors often know more than me!  ?

I wish you well.