One year gluten-free, perhaps time to move on

[danielakadaniel]

Hi, it's been a little while since I posted on these forums. I've been gluten-free for about 14 months now. It's been a long journey and I appreciate the support of community of celiacs both here and elsewhere. I've been suffering from severe nerve pain and numbness from carpal tunnel like symptoms in my hands, as well as debilitating joint pain for about a year and half. In my medical exploration I found celiac disease. I started the gluten-free diet and by four months in my TTG levels were almost normal. By month seven my TTG levels were normal. I tried taking a moderate dose of steroids for month, but despite my best hopes I did not experience symptom relief. I tried very restrictive diet for three months only eating fresh fruits, vegetables, white meat, and herbs. Despite the time that had gone by and both interventions I did not experience any symptom relief.

I recently got a follow-up endoscopy which showed marked healing of my small intestine. It also diagnosed me with eosinophilic esophagitis, which unfortunately has little to do with my symptoms causing the most suffering. My two gastroenterologists tell me that it is extremely unlikely that my symptoms are resulting from my celiac disease at this point in my recovery process. This is extremely unfortunate because I have ruled out almost everything else as being a cause. (Rheumatologists, neurologists, infectious disease doctors, orthopedists, and a stint at the Mayo Clinic). I'm 22 years old. I really want to hold on to celiac as a cause of my pain (bc it would mean I could heal and improve with time), however, I want to be realistic. Does anybody have any advice, anecdotal or otherwise, about my experience? Thanks.

[bartfull]

Well, if it is neurological damage from celiac it could well take more than 14 months to heal. Neurological symptoms are the last to go and in some folks they never completely heal.

I'm sure they tested your thyroid. That can cause carpel tunnel-like symptoms. So can Lupus.

I know how hard it is to deal with symptoms when you thought by now you'd be better but remember, so many people have had to go from doctor to doctor to finally get a diagnosis. You're not alone. If nothing else, try to stay positive. If these ARE celiac symptoms they may take another year or two to resolve. But there are quite a few folks here who DID get better, even from debilitating neurological symptoms.

(((((HUGS)))))

[mommida]

Did you ever find out what your triggers for Eosinophilic Esophagitis are?  If you can stop the immune system attack, you will have a chance to feel better.

It stands to reason that your thyroid is under an auto immune attack along with inflammation of your joints.

[nvsmom]

Ditto the others.  If it is celiac disease, you may need to wait longer.  I was convinced I had more wrong because I still had my arthralgia flare-ups after a many months gluten-free. It started to really improve after a year, and was mostly better by 2-2.5 years gluten-free. It can take a maddeningly long time to get well.  

I agree that you might as well look into other causes at the same time.  Celiac can cause lupus like symptoms, but it can also predispose you to other autoimmune conditions.  It is wise to check into it.

Best wishes.

[mommida]

Eosinophilic reactions are like Celiac symptoms a hundred times-fold.  Celiac is your immune system attacking your body tissue, an eosinophil is the top of the line immune defense white blood cell complete with a small shaft/spear of destruction.  Even the weakest eosinophil continues to cause damage for up to 12 days.

You need more time to heal.  I strongly suggest you do an elimination diet to figure out what your "triggers" are. the top 8 allergens and peas should be eliminated.  It took 2 years to go through this process with my daughter and you may need to add in an amino acid supplemental formula for added nutrition.

[danielakadaniel]

Thank you all for the advice and kind words. I have previously gotten comprehensive testing for a variety of autoimmune issues, but I am thinking of trying to see an endocrinologist and getting retested because I do have several other family members with thyroid issues (including one with celiac and thyroid issues)! Potentially seeing an eosinophilia expert to see if I have eosinophilic issues beyond eosinophilic esophagitis. I am definitely going to attempt to eliminate common allergens associated with eosinophilic esophagitis from my diet. Unfortunately, it's not very easy for me to do since I have a long list of foods I have to avoid due to allergies since birth. Also my joint pain makes food prep and cooking very difficult. It's been maddeningly frustrating waiting for non-existent symptom reduction from my gluten-free diet, but at least tests say that I'm healing on some level I guess.