New to fourms, please need advise

[ss82]

Hi

Hoping to get some help with my issues. For the past 5-6 months, I have been having digestive issues (reflux, bloating, gas, loose stools), back pain, shoulder pain, brain fog, fatigue, on and off frequent urination etc. I went to my GP and he did lots of blood test and everything came back normal. I had this same issue 4 years ago and did ultrasound, colonoscopy and endoscopy and everything came back normal. Miraculously i got better after 6-8months and had zero issues for 4 years until it started again 5-6 months ago. I went to a functional medicine doctor and she did a GI map and Wheat Zoomer test and said I have non celiac gluten sensitivity gut dysbiosis, leaky gut and because of that my elastase is on the low side. So she put me on digestive enzymes and some anti microbials. I am definitely feeling better than few months ago but definitely not back to 100%. The weird thing is, I feel completely better and then boom, the issues come back again. I have been on gluten free diet for last 4 months or so but definitely have had gluten on and off either by accident or because e there was nothing else (pizza or cupcake at my kids birthday party). I also stopped drinking alcohol ( i was not a heavy drinker or anything). 

here are my wheat zoomer results. Can you help me with undertstanding this? Everything was withing range except Anti Zonulin IGG, Anti Actin IGG, Alpha Beta Giladin IGG, Glutemorphin IGG, LMW glutenin IGG were all high risk. I dont understand what these IGG mean. All the IGA were within normal range. 

 

can anyone help me whether NCGS can cause these and how long it will take to get back to 100%? Also for NCGS if there is gluten exposure, do the symptoms come back and stay for weeks? 

 

thanks

 

[trents]

Welcome to the forum, ss82!

I can contribute a couple of tidbits.

I notice the high Anti Zonulin IGG. Zonlin is known to be the primary regulator of cell spacing in the small bowel villi. So that may have a bearing with regard to your leaky gut. Leaky gut is implicated as a primary factor in celiac disease but I don't know about how it fits in with NCGS. Leaky gut allows larger than normal protein fractions to enter the blood where the body may detect them as an invader. At least, that's my understanding.

IGG tests are sometimes helpful in diagnosing celiac disease in people who actually do have celiac disease but whose immune system is reacting atypically and not producing IGA antibodies. They can be particularly helpful with young children with immature immune systems and with adults who have low total IGA counts. Low total IGA counts can skew the tTG-IGA score into the negative range and so give a false negative. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I take it you have not had an endoscopy/biopsy to check for villi damage in the SB.

Edited March 17, 2022 by trents

[Scott Adams]

Welcome to the forum! Since you've been gluten-free for four months you can't undergo screening for celiac disease now, so there is no way to be sure whether or not you have it unless you are willing to eat gluten daily for 6-8 weeks before doing a celiac disease blood screening. Given that your symptoms get worse when you eat gluten it seems possible and even likely that you have non-celiac gluten sensitivity, but there currently isn't a test for this condition, although the treatment is the same--a gluten-free diet.