I'm a 31-year-old high school teacher (currently on disability) who has been dealing with 4 years of major gastrointestinal problems, which resulted in major surgery for a rectal prolapse & redundant colon last August, prior to which I had lost about 20 pounds. The source of all my gas, bloating, distention & diarrhea has remained basically unexplained though ("lets trust the surgery resolves your obstructed defecation and in turn your gas... d'oh it made both worse" :( ) , and my symptoms have only gotten significantly more severe since surgery. I'm facing a permanent ostomy. I've also, for the first time in a lonnng time, been eating a lot of gluten every day... primarily out of depression and (misguided?) attempts to gain weight and keep stool soft.
I've been typically slightly underweight for 10+ years. Suffered anorexia for a period 10 years ago, and since recovering have "naturally" maintained a low weight and low-wheat lifestyle (I've always been put off by heavy wheat items like bread, sandwiches & pasta, *shrug*). As a child I had crazy severe & unexplained constipation issues. I've also had strong teeth discoloration & marked enamel defects (& two missing adult teeth(?)) since childhood. Depression & anxiety have been longterm issues. I have osteoperosis, which was perviously explained by me being anorexic from 19-22.
Everything changed 4 years ago upon the onset of all my (severe) classic-IBS symptoms (gas/bloat/d+c). On a low-gluten diet, TTG bloodwork came back "low-positive" repeatedly. A biopsy showed no damage, but my gluten intake at the time was limited to 2 cookies a day, or occasionally 2 cookies and a piece of pizza. Would this have been enough to show damage? I trialled going gluten-free for a few months, and didn't find a ton of relief... so assumed I was just FODMAP intolerant... however I was eating lots of oats and lactose that whole time, which I have subsequently identified as major triggers... not to mention just lots of gluten-free junk food. Wheat was obviously a significant gas trigger since this hit, but that seems typical for gut illness in general.
Since my major surgery and the continuation and worsening of symptoms, I've connected with an internist who has again and again pushed me towards eating wheat as a method towards weight gain and healthy non-anxious eating. I also found that a high-wheat diet would provide the proper consistency (i.e. very loose diarrhea every day) to allow colorectal function (the surgery I had went very poorly and caused major obstructed defecation). I have not had success gaining weight, and have found my digestive system feeling assaulted like never before 24/7 by bloating, gas and discomfort, despite a relatively low-residue diet and constant elimination. My appetite has never ever been worse.
I just had a fourth TTG test, and after this high-gluten diet I am now testing POSITIVE as opposed to BORDERLINE.
1) I suspect my first biopsy's gluten challenge wasn't quite heavy enough in terms of gluten content (couple cookies a day). Thoughts?
2) Could being underweight alone cause an elevated TTG? How about simply having colorectal surgery? "IBS" or the supposedly non-pathogenic gut bacteria blastocystis hominis which I've been diagnosed with? I haven't been diagnosed with any other autoimmune condition, and I'm so confused. So far everyones just shoving the TTG off on IBS/anorexia, which doesn't make sense to me at all.
3) I really don't know what to do right now. I'm 20 pounds underweight, in digestive hell, with most of my medical support still suspecting I'm merely acting anorexic. I most assuredly am not. They want to put me on a tube. I would really like to get off the gluten in order to ease my system and gain weight, as I'm clearly reacting to it and have been deluding myself for the past year trying to recover from this surgery, but I'd also *REALLY* like some diagnostic confirmation so my doctors & family all stop looking at me like I'm crazy, and that so I can act with appropriate caution/freedom in my dietary future.
4) Do my childhood experiences line up with any celiac sufferers? I've heard about enamel defects, but missing teeth or crazy constipation? Obviously osteoperosis could connect, and doesn't *really* line up with my anorexia considering I was already fully grown.
5) Is there any way to get EMA/HLA blood tests done in Canada (BC)??? It's really frustrating that my only chance for any confirmation is waiting months and months here for another biopsy, especially considering how dire the need to improve my digestion is ASAP. I imagine if I could get an EMA test & it came back positive I would just take that as my confirmation and be able to move on with confidence here.
6) Is it common for celiac sufferers to find themselves reacting to FODMAPS and/or histamines in foods while they're still maintaining a gluten-filled diet? Gluten definitely isn't my *only* trigger right now, and that's probably a primary reason I haven't been led to eliminate it at.
Sorry for all the talk & questions, but I'm in an incredibly challenging place right now, my head is just swimming and swimming, and any thoughts would be greatly appreciated!
Current, after six months of a heavy-gluten diet = Tissue Transglutaminase Ab IgA ---18.0 ---- <12.0 U/mL = normal
POSITIVE -Probable celiac disease but this should be confirmed with a small bowel biopsy. [Tested by a multiplex flow immunoassay
6 months ago = Tissue Transglutaminase Ab IgA ---13.0 ---- <12.0 U/mL = normal
BORDERLINE - Borderline anti-tTG. Suggest repeat if clinically indicated.Consider the possibility of celiac disease - a small bowel biopsy may be required. [Tested by a multiplex flow immunoassay
2012, prior to negative biopsy = Tissue Transglutaminase Ab IgA ---24.0 ---- <20.0 RU/mL = normal
Weak positive anti-TTG. Consider the possibility of celiac disease - a small bowel biopsy may be required.