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Are My Symptoms Realted To Celiac?

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As each day has gone by for the last 3 years since my first episode with extreme heartburn, I have been in and out of the hospital, had many CT scans, MRI's, ultrasounds of my abdominal area, blood tests, Colonoscopy and Gastroscopy, Pill cam, and have been put on many drugs for treatment of SIBO (which was unconfirmed).  GERD was a diagnosis at the beginning that slowly migrated to Chrons and finally Undiagnosed Celiac which is still presently my GI's working diagnosis.  At one point they suspected H. Pyvari which another round of antibiotics with Proton Pump inhibitors which lead me to not returning to my way of life before this whole ball game started.  I ended up going on Short term leave twice as a result of poor medical treatments.  SIBO usually always comes up (tested with low results) and they run another round of Cipro for that….which by the way I am now allergic too.  At one point they even suspected an STD which almost put a wrench in my relationship.  All clean in that area.


As I was put under for each scope, they have determined that my villi was presenting a MARSH 3a presentation which means it’s almost complete atrophy.  For the last 2 years till this past year, I showed no signs of improvement, almost a worsening effect was going on. Oddly, my last scope this past June showed huge improvements since seeing a naturopath.  I was also informed that the doctors and pathologist feel that I have been suffering from atrophy for some time since my original scope which was done 20 years ago showed a mild case of atrophy which was of no concern at that time.  This has lead my doctors to test my genetics to see if I have that HDQ2 and HDQ8 markers which I tested positive for HDQ8.  However, any normal serum tests for transglutamase has always come back low (2.0-5.0) which is 2 points lower at my highest than a weak positive when I was consuming wheat products.  I had never tested positive for serum tests.  My GI felt putting me on a gluten free diet may help, which it did.  But for the last year and a half since being on this diet I get episodes where I feel glutenated, similar to the feeling when i go out for dinner and may get a mild dose of wheat.


I am very careful when cooking meals at home.  No blended spices are ever used and I stick to protein rich foods like chicken, steak and fish.  Starches are potatoes and gluten-free starches that I buy from a dedicated health food store in this area.  Plus I eat a ton of vegetables and fruits.  If I eat out, I am very picky with food preparation and ask how it is made.  If they can’t answer me, I don’t eat there.  If at all possible I will go to dedicated vegan places that specialize in diet restrictions.  I don’t suspect a hidden source at this time as I have eliminated everything from my pantry and replaced everything in my kitchen.


So why am I writing this?  Well to be honest, I am confused and tired of playing games with doctors.  I am not getting any form of diagnosis and as the day’s move forward I feel like I have actually stepped back since starting this diet.  I have lately been getting all sorts of weird symptoms which I cannot explain the cause.  I suspect Yeast but im still skeptical as my tongue can be brushed clean if it does go an off white color.  From time to time I wake up feeling almost Hung over like when I had not been drinking any alcohol the night before.  And if I did drink, it might be 1 or 2 gluten-free beers or a glass of wine which normally doesn’t faze me the next day.  I suffer from severe brain fog, can barely concentrate on simple tasks, am very tired most of the time, sexually un interested when before I was what you could call an ‘addict’…lol!, mood swings, nasal congestion, sore throat, pain in my underarms, joint pain, night sweats, leaking ears, prostatis (tested for all sorts of STDs to rule that out), oddly colored semen but no discharge, itchy anus, small variations of hives on my body after a shower) and of course chronic abdominal pain to mild abdominal pain that can last days….its all odd.  Yet I always wonder if my gut could possibly be leaking and that’s my reaction…however my GI has tossed out that idea or even yeast as an indication claiming there is no such thing as a leaky gut syndrome.


What makes this all strange is that I have always had to ask for difluicon for yeast.  Any since all this antibiotic has been put in me, I have been treated maybe 3 times for a few days at a time.  And when I do take the difluicon I feel better in a week or two, which lasts maybe a week.  I fear taking this stuff for what it does to the liver hence why I don’t want to take it for a month at a time.


So im asking anyone, have you had anything similar and how did you return to a normal way of life?  Is it possibly yeast?  Any blood tests I could have them run for celiac or even yeast?


Also to add something strange to the pot, I had twinrex done sometime ago and failed to test positive for the vaccine for Hep B.  They did it a second round and again, didn’t test.  Im wondering if maybe I have a poor igA response, hence the no response for celiac.  I believe I am celiac as I can feel better much of the time off it, but from time to time I get episodes that I can not explain.


Thank you.


Bill Elter



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My old MD believed in Leaky Gut Syndrome.  All those courses of antibiotics you took!  (As a side note: CIPRO has a "black box" warning about serious side effects that the FDA has required the manufacture to disclose.)


Frieze's suggestion is good.  You typically can last a month on a diet like that.  All fresh meats, though.  Nothing preserved.  Then after than add back complex carbs only.  Then add a piece of fruit but only once a week.  You must eat tons of veggies or you'll feel like your're starving.  


You should start keeping a  journal because it sounds like you have allergies or intolerances to foods or something in your environment.  A food rotation can help identify them too.  


I took Diflucan under my doc's supervision for 8 months!  My liver did well and I was tested frequently.  


If you think it's candida (yeast) try to find a savvy MD who can help  you.  Let's hope others who know more about celiac disease testing/results can help. 


Good luck! 

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