Struggling in social settings, still issues after 3 years gluten free

[mcbphd1]

I am in my mid-50s and was diagnosed with celiac 3 years ago after about 10 years of mysterious vitamin deficiencies, thyroid issues, and finally gastrointestinal symptoms.  I was diagnosed through the antibody testing - they were all sky high, so there was no doubt.  Since I had already been gluten free (or so I thought) for about a month, the GI and I agreed a biopsy was not necessary for confirmation.  Like many newly diagnosed, it took a few months to figure out how to eat gluten free, and then another year to understand that gluten free in restaurants isn't safe for me.  I am now very sensitive to gluten, and I am perfectly fine preparing all my own food even though it takes a lot of time.  My diet consists of primarily chicken, fruit, veggies, limited dairy, and brown rice. I eat almost no processed foods - occasionally use Pamela's flour and sometimes Breton's gluten free crackers when I travel.  Despite all of this, I am still struggling. I am now finding that I cannot even be in social settings where people are eating gluten or drinking beer. Last weekend, I went to a party at a friends house and took my own vodka/orange juice drink.  I did not eat anything at the party.  I sat at a table where people were eating bread and cheese, and where kids were coming by with cake and cookies - I sat back from the table a few feet and sipped my drink.  About 48 hours later, I had my typical gluten reaction, which for me is severe abdominal pain, constipation and abnormal bm, vertigo, anxiety, high blood pressure, and feeling like I have the flu.  Took several days of trying to figure out what happened, but then I remembered the party. I had the same experience last fall going to a pub and drinking water while my friends ate burgers.  I am concerned that I have had to become increasingly socially and professionally isolated, and this seems to be contributing to some depression.  I no longer attend work events where food is served, go to bars or restaurants, or attend professional conferences.  I even find that when I watch my son's tennis team, I get sick if the kids are near me having sandwiches and cookies.  Can this really be gluten exposure or am I losing my mind?  Are people touching surfaces like bathroom doors, bleachers, table tops, etc., and then I touch it and get contaminated?  Is the wind blowing tiny crumbs into my drink?  How in the world does someone like me cope with having a professional career (I'm a college professor and researcher), having a non-celiac family, and maintaining friendships without being sick all the time???  

[kareng]

I hope you look for other reasons for your symptoms.  Celiacs are able to live in the world.

 I have some gluten eating at my house.  I can sit by people drinking beer or eating a sandwich. Sure, I keep my plate where thier gluten crumbs won't fall on it.  I ate some strawberries at a grad party from a tray that only had fruit on it and was not next to anything that made gluteny crumbs.  I did pick the ones from the back of the tray, just as an extra precaution.  I ate the gluten-free/ paleo desserts from a plate with only that on it.  I made sure to grab my carob almond butter balls ( surprisingly tasty) before they cut the gluteny cake next to the tray.  My kids were surprised I would eat a gluten-free dessert that someone else made.  Usually, I do not because I don't know what else they may have been doing.  But, in this case, I knew the young lady that made them was careful.  I did not eat the one with oats, as I didn't want to quiz her on if the oats were gluten-free.

The point of all this rambling  is - with some care and some common sense, Celiacs can live in a gluteny world.  Perhaps your issues are something else?

 

 

[cyclinglady]

O am sorry that you are sick!  

When was the last time your doctor ran a complete celiac antibodies panel?   Make sure the DPG test is given as it seems to be better monitoring dietary compliance.  

I don't know if my personal story would help, but I got glutened in July.  Symptoms were very different than when I was first diagnosed (anemia).  Six weeks after my glutening, my GI tested my antibodies.  They were sky high (just the DGP as my TTG is always negative.)  This confirmed that I was glutened while I was on vacation.  It took me a full three months to recover (became lactose intolerant again) and three more months to start gaining weight.  Six months for a glutening attributed to perhaps just traces or cross contamination!  I also picked up a new illness (allergic-type reactions like flushing, itching, hives (not DH), abdominal pain, and vomiting).  

I would bet you might be getting glutened in your own house over any of the social settings you described. 

If you can rule out celiac disease, then you can look for other sources for your symptoms.  

 

 

[mcbphd1]

Thank you both.  I have had allergy tests, done the elimination diet, and had a million other tests.  Twice the doctor rechecked the celiac antibody panel and all were below normal limits.The only abnormal test results are borderline low vitamin b12, D, and calcium, and a low thyroid and sometimes cranky gallbladder but no stones. The doctor added some Armour to my Levoxyl, which helped some things.  I'm ok until I'm around others in social settings when they are eating.  In my house, our kitchen and all dishes, appliances, etc., are completely gluten free.  I have one room in the house (the old playroom) that I never go into where the kids are allowed to have pizza and burgers that they bring in in paper containers and throw away in an outside trash can.  We use grain free dog and cat food.  All of my hair and beauty products are organic and gluten free.  If I am getting gluten somewhere it must be from food products labeled gluten free, like Pamelas flours.  I have not eaten in a restaurant in over a year. It is beyond frustrating!

 

[cyclinglady]

I use Pamela's flour blends and I have never been glutened.  I do not eat it very often as I am a diabetic and all grains increase my blood sugar levels.  How much gluten-free  flour do you think you are eating?  Do you bite your nails or put your fingers in your mouth? 

My thyroid became very stable once I went through menopause and healed from celiac disease.  Do you think you are developing another autoimmune disorder?  Has SIBO or Crohn's been ruled out?  Have you had a HIDA scan on your gallbladder?  This will determine functionality.  I had my GB removed a decade ago (no stones ever).  My HIDA scan showed 0% functionality -- it was rotting!  If I recall, the cut-off is usually around 20% (my cousin had her's removed when she hit 20%).   There must be a reason for your borderline levels.

I hope some of the rambling will help you!