Julianne101

I have been gluten intolerant for years and stayed on a strict gluten free diet.  I did not, however, worry too much about contamination since my reaction was not severe...mostly bloating, gas, and constipation.  About a year ago I entered peri-menopause and was dealing with difficult symptoms (hot flashes, joint pain, insomnia, etc).  A friend recommended a probiotic/herbal supplement called Provitalize that helped her immensely.  So, I tried it and within 24-48 hours had severe diarrhea.  Strangely, althought I stopped taking it, the diarrhea lasted on and off for 3 months!  I thought I had a parasite or something, but all parasite and other GI tests came back negative.  So I assumed my gluten sensitivity must have developed into full-blown Celiac Disease...  Has anyone else used Provitalize and had a bad reaction to it?

Thank you all, for the helpful responses!  There is so much to learn about how to manage this. As one of you mentioned, I thought maybe I was dealing with additional food sensitivies. So, I asked and was referred to an Allergist who said, "no, food sensitivities wouldn't cause chronic diarrhea alone."  I guess because I don't have any skin reactions or respiratory symptoms.  So, I'm not sure what to make of that or how to even figure this out.

I will be seeing another GI doctor who specializes in Celiac Disease soon, so hopefully he will have some answers.  In the meantime I am barely managing my symptoms.  I'm not eating any hidden gluten that I know of, but maybe it is sneaking in in places I'm not aware of.  I have chronic diarrhea and it's a real challenge to go to work.  For now I'm using pesto bismol or immodium to control the symptoms.  I know it's not ideal, but until I have answers, I'm not sure what else to do.  I'm living on a very simple BRAT diet too.

I have one last question for now....I have terrible joint pain that seems to only come at night. Is that a symptom others have dealt with?  I've tried stretching, massage, etc. but the ache hits different tendons in my hips and pelvis at night mainly. Is there a particular pain reliever that is considered most safe for people with Celiac Disease?  I think I read somewhere that NSAIDs are a concern contributing to gut issues.

Thank you for the feedback!  I realize the restaurant meal was probably contaminated but I had no idea a reaction to gluten could last so long!  I’m hoping I find a doctor who will take me seriously.  

Is Imodium or Pepto Bismol safe to take to manage symptoms?  

I'm new to this forum.  My sister was diagnosed with Celiac disease 20 years ago right around the time my 2 year-old daughter developed a swollen belly, prolapsed bowell (constipated), intense sweating, etc.  So, my sister suggested maybe it might have something to do with gluten.  My daughter's gastroenterologist said he didn't want to put her through an endoscopy (her blood test was negative) but I was welcome to try the strict gluten-free diet if I felt like it.   I did, and sure enough, withing a couple of days all of her symptoms disappeared.  I was shocked the first time I got her up from her nap and she wasn't literally drenched in sweat.  So, I decided to try the strict gluten-free diet too.  I was very sick with my pregnancy for my daughter and never really felt good since, lots of GI issues (gas and bloating primarily). I found that my symptoms also disappeared on the gluten-free diet.  So, I have been gluten-free ever since.  I avoid milk (except for cheese) because it causes gas and bloating. 

Fast foward 19 years to just 1 year ago.  I started taking a new probiotic to try to ease menopause symptoms.  The next day I had sever diarrhea.  I thought that was weird, so I stopped taking the probiotic and started to feel better, but then the diarrhea came back a day or two later and remained on and off every few days for three months! It was nothing like food poisoning or the GI bug.   I got tested for parasites and other infectious diseases but everything came back negative.  So, I thought maybe I was developing a more severe form of gluten intolerance.  I also found out that right around the same time that I got the diarrhea, my brand of oat milk had changed their formula and was no longer using gluten-free oats, so maybe that was the cause.

AFter three months, the diarrhea finally cleared up and I became much more vigilent about gluten contamination.  A couple months later I ate out at a restaurant.  The meal was labeled gluten-free, I clarified with the waitress, but the next day the severe diarrhea was back and this time it lasted two months but finally cleared up!  A couple months later, and I am cuurently in my third episode of diarrhea, and I have no idea what may have caused it.

I've been to a Gastroenterologist who has tested me for everything under the sun and finds nothing wrong with me.  My colonoscopy is perfect, endoscopy perfect, IgA 184 (normal range), and several other tests all normal except for high eosinophils.  I've lost 20 pounds and struggle with dehydration. 

I'm very curious, has anyone else with Celiac disease ever experienced anything like this?  Can people have a gluten contamination reaction last for 2-3 months like this?  The NP I saw in the GI Clinic claims my diarrhea has nothing to do with gluten, but I'm not so sure.  I've asked for a referrral to a specialist.