Symptoms despite strict gluten-free -- new here

[siobhannyc]

Hi

I was told I was celiac 12 years ago based on a blood test (never did biopsy, and yes, I know that's the current diagnostic miminum for celiac). In any case, I felt good for a long time but now my gastrointestinal symptoms are back -- they have been for about a year. I went to the GI and she tested me for antibodies thinking I might be accidentally getting glutened on a regular basis. Those tests came back negative. Now she wants me to reintroduce gluten and get the endoscopy.

Honestly, the idea of on purpose eating things that make me feel completely terrible, achy and fatigued is unappealing—just to have a doctor confirm what I already know? But I want to know why I still have symptoms (bloating, mostly, after almost every meal). I don't eat any processed food, I avoid dairy and I cook most of my meals myself. Why would I get bloated from that?

Any feedback would be appreciated!

 

[cyclinglady]

Can the GI first rule out SIBO, Non-functioning gallbladder, H. Plyori, etc?  Even if you do the gluten challenge and you confirm that you are a celiac, what good is that?  You still have symptoms.  You did have then DGP test, right?  That one seems to better measure gluten in the diet.  

[SunshineSometimes]

Hi, I recently had this same issue.  I went gluten free many many years ago and it resolved the vast majority of my symptoms, although my Drs wanted me tested for celiac I always thought it was pointless to go through all that pain.  However as I've gotten older my diarrhea, gas, bloating random infections and brand new bouts of vomitting started coming more and more frequently.  I went to a new Gastro who told me he thought I was celiac, and I was more senitive or less carful then I thought I was being.  My antibody blood work came up negative, so I decided to bight the bullet and do the challenge.  3 days in I broke out in DH which a biopsy confirmed, and so my Gastro bumped my biopsy up to that same week and to my shock after 5-6 years gluten free my intestines were still damaged enough for a positive celiac biopsy, and I also have pre cancer polyps.  Anyway the point of my long story is although I thought the diagnosis was silly before, knowing that my intestines have not healed is priceless information.  I will be starting with a nutritionist, going on the SCD diet and having a follow biopsy in a year.  If your still having symptoms and there's no other reason, you may still have damage also, and it is really worth knowing.  ?    Good luck!!! 

[jalvarez1010]

I have been reading a lot about leak gut syndrome which is new to the medical community in the sense that they don't know how to manage it.  If (you are female) make sure to do a yearly pap and uterine check to ensure there is no issues there.  If you are not a female then definitely confirm with an endoscopy if your small intestines are still damaged.  I am looking into doing the leaky gut diet to see if it will help, the book I am reading is "Eat Dirt" by Dr Josh Axe.  Especially since I notice anytime I am exposed to gluten by accident my symptoms are worse each and every time.  I know get severe back and rib cage pain, with bloating, gurgling and diarrhea with severe nausea.  I am willing to try anything and I am now reading this book and applying the diet to see if I can heal my intestinal lining.