42 year old mom of 3, just diagnosed in December...Merry Christmas to me. Biopsy Marsh Score 3A plus the following blood work:
IgA, Serum 196 mg/dL 80 - 463 mg/dL
Gliadin Antibody (IgA) 22 U <20 U
Gliadin Antibody (IgG) 52 U <20 U
Tissue Transglutaminase Antibody 14 U/mL U/mL
Doc says yep you've got Celiac. Avoid gluten and you'll be fine. But I don't have intestinal problems. I got the gastric sleeve surgery nearly 4 years ago and lost close to 150 lbs. If I don't make sure to take magnesium, I get constipated due to the pain meds I'm on, but my problems are more neurological, leading me to think I could have Gluten Ataxia. It describes me pretty well. Although there's no mention of the fact that I can't stay awake without stimulants, can't focus or get anything done to the point of being on disability and all the back pain and ETD (from multiple ear tube surgeries as a kid). Pretty sure my dad has DH (although apparently all the dermatologists he sees are idiots and no one has ever mentioned Celiac or DH to him even though he has the most classic looking rash on his knees and elbows that I've ever seen...oh and is pretty short at 5'3) but he doesn't have any intestinal trouble at all.
Ok so denial question: Is it possible to have these results and NOT have Celiac? Or to have some other similar condition or temporary Celiac or anything else?
How the hell am I supposed to get through withdrawal? 2 days gluten free and I felt like death and pretty much preferred it to continuing on the gluten free life. 3 days in and I've broken out in a huge rash that I've not had before. Super itchy on my hands and one of my inner ankles, but there are more small pink/red raised bumps that don't itch too, and then a bunch of flat super red dot ones over my whole trunk area, like Petechaie or whatever they are called. 6 days in and I couldn't take it anymore and downed a spoonful of cookie butter. Almost instant relief. My head stopped pounding and the bumps are going down and are much less itchy. My intestines untied themselves from the knots they had been in. My head cleared up (back to it's usual inattentiveness) and the fog lifted. My brain started making connections and the anger has yet again set in.
Ok great so now I have to start all over? Wait...so withdrawal from gluten is just as bad as a junkie withdrawing from heroin...but junkies get all kinds of help to get through their withdrawal and they did it to themselves! I didn't do this to myself, I had no choice. What the heck do I get? A pat on the head? A youcanDOit! That's just BS. And then wait, so after I recover and am off gluten...then if I get accidently exposed or cross contaminated...then I will have the agonizing intestinal torture that is traditionally seen with Celiacs? Which from what I'm discovering has happened to every single one of them I've ever read about or talked to.
Ummm...no thanks. I don't want to be a pariah among my friends. I don't want to be the difficult one who sits in the corner of the booth with the look on my face that says I'd rather run screaming out of the restaurant than watch you guys enjoy all the stuff I can't. Oh and heaven forbid one of them take a bite and then sneeze in my direction, or fail to sanitize their hands before touching mine. What if my husband eats a cracker and then kisses me? Is this really what I'm in for... for the rest of my entire life?
I already have a list of foods I can't tolerate due to my gastric sleeve surgery. Now you throw in Celiac and there goes most of what's left. So you've got to tell me here, is there really life after Celiac? Or am I just the next casualty left in the wake of a corrupt government? What am I supposed to eat? I can't eat most grains or anything dense as it just sits in my stomach and makes me feel nauseated. No rice or pastas, very limited meats, limited fruits due to a fructose intolerance and most veggies either cause me horrific intestinal pain or look as appetizing to me as a slug on a stick. So I'm stuck eating cheese and nuts...literally, I should buy stock in Sargento Balanced Breaks. Oh wait, but now I'm being told that Celiacs should probably be avoiding dairy too. So nuts, for the rest of my life. Well they say you are what you eat so I guess they got that right.
I'm beyond frustrated. Beyond angry. Beyond 'well at least they make lots of gluten free stuff now'...cuz I swear the next person...I'm sure you're all with me on that one. Starting to think maybe we all need to get together and sue the government for poisoning us. Cuz I'm just speechless, and with a nickname of 'omg will you just shut up already'...there's just sooooo much wrongness here.