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About krystal16

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  1. I have minimal GI symptoms. If I go gluten-free, I feel better but when I eat gluten, nothing major to remark of. I'm the kind of person who likes to do one thing at a time to get clear answers, so will add in the enzymes after the 3 mos gluten-free and bloodwork test. My chiropractor has that as the next thing to add in, I'm not sure exactly which ones he planned. The ARMD changes things a bit, because no one's really heard of it starting so young from chronic poor absorption. In a way, I'd like an official diagnosis of some sort, but only if it's figured out fairly soon. The clock's ticking!
  2. Sorry if this posts weird, my phone is grabbing all previous posts when I try to reply. It's ugly. My diet is very low on packaged/processed foods to begin with, so the move to gluten-free was not a huge issue, and isn't including a gluten-free substitute product for the most part. As for enzymes, I have been working with a chiropractor that does functional medicine and we've talked of pursuing that path next. He is the one that did all of the serum vitamin levels and laid it all bare. Going back through the sporadic vitamin testing I'd had through the years, he showed it's been like that as far as we can find. I'd had one vitamin tested at a time here and there, and the medical doctors chalked it up to a fluke since my diet was healthy. Doing them all at once showed a larger issue. Ennis_TX, is your pancreas issue the cause or effect of the celiac, or are you gluten-free without a diagnosis of celiac?
  3. I've been taking the AREDs for a while and doing the test regularly, as advised by my doctor. I still have "dry" and decent vision, but it is progressing. With taking that and several other suggested supplements, my zinc level is still quite low (as are others) which has led the doctors to speculate that poor absorption is the cause, since I have zero familial issues, no other diseases and I'm way too young for it. You are correct about your brother - diet and exercise do play a role in its progression. I've modified mine to try and slow progression, but the persistent low vitamin levels are concerning to me. I have had a decade and a half of doctors basically rolling their eyes at me for saying that I really suspect a gluten issue - and I let their disdain affect what I did. Now that I have MD, other doctors are finally saying, "Gee, you have a problem and all roads are pointing to malabsorption, so we're sorta stumped since you tested negative for everything." FYI, my serum blood levels of MANY things are literally right over the line of what medical doctors consider normal, so they all say there's no problem. No one wanted to look at the larger picture until now. In three months' time when they test my serum blood levels, if those levels go up noticeably, I'll have my answer. They can do with it what they want. They aren't the ones whose sight is on the line.
  4. I lost about 25 pounds a year ago by cutting back my carbs (and by default, lowering my gluten consumption to very low). I added in gluten this past Thanksgiving for the bloodwork and never went back to the lower carbs (I primarily substitute with veggies, quinoa. I still exercised, tracked my food, took my supplements. I actually gained weight back, even though I was in a calorie deficit. When I went gluten-free three days ago, I decided I'd stop tracking for a bit because going gluten-free and trying to lose weight at the same time just seemed overwhelming. I'm doing my best to eat healthy foods, and I generally don't want to eat the processed gluten-free foods. I lost 3# in the past 3 days without even trying (not hungry either). I have eaten potatoes, chocolate, some ice cream, tons of fruit - so I'm certainly not low carb. There's definitely something to this gluten-free thing for me.
  5. Thanks. I recently looked into FODMAPs and I'm pretty sure that's not my issue. 2 days of gluten free and I feel vastly different (as always). Many of the FODMAP foods are staples for me when gluten-free and feeling quite good. I'm not saying that it can't be, but I'd be surprised if it were. 3 months of gluten-free and then retest vitamin levels. I've been supplementing and have a very diverse, pretty healthy diet, so it isn't intake. I am in agreement and there is a finite amount of time before I just do what I want to feel better even without a specific diagnosis. The blind thing is the only reason I'm playing the medical game again. It would be nice if they could pinpoint the reason so I can be proactive in slowing the progress.
  6. Thanks! Im working with a specialist that deals with weird stuff that often stems from mitochondria and autoimmune. 15 years ago, I went through the gastro route but it was a nightmare because I kept getting brushed off (I had the EGD at my insistence and my GP begrudgingly referred me out). I was not informed, though and the GI doc never said I had to be eating gluten. Oops. I am currently in the very slow wheel of doctors and specialists. This guy is very open minded and had many other specialists that work to find solutions for weird cases like mine. He is sharing my stuff with that GI /allergen doc before I go back. I'm glad to know the names of the additional tests that you mentioned. Thanks so much.
  7. Thanks for replying. I'm in my early 40s and have been through just about every blood test and a few others to figure out the root cause of the malabsorption. I am fairly sure the doctor did the test to see if I'm IgA deficient - can you tell me? Here's the list of bloodwork I had done that day (there might be others not related to celiac disease, but I don't want to exclude an important one) IGE Serum IGA Serum (111 was my value, ref range 81-463) IGG Subclasses, IGG Serum Cardiolipin (IGG, IGM, IGA) TISSUE TRANSGLUTAM ANTIBODY IGA/ IGA SERUM TISSUE TRANSGLUTAM ANTIBODY IGG Also, I was not on a gluten free diet leading up to the test, and the four/five weeks prior to the test, I deliberately ate what is an exceedingly large amount of gluten products (for me), which was at minimum the equivalent of 2 slices of bread per day.
  8. I have macular degeneration decades earlier than normal with no familial history. The going theory is that my vitamin levels have been low for many years, supplementation barely helps. I have modified my diet over the years to exclude refined garbage, minimize (though not exclude) gluten. I have no real GI issues except bloating if I eat a lot of breads, pastas. I recently had the full Celiac Panel (and every other test for autoimmune diseases) and all came up normal. No EGD, as bloodwork is fine. This doctor said the bloodwork is accurate. My questions are: how accurate is the bloodwork? Second question is, has anyone ever heard of non-celiac gluten sensitivity causing malabsorption to the degree that it affects serum blood levels chronically? This doctor suggested a 3 month gluten-free trial and then repeat serum blood tests for vitamin levels to see if they improve. I'm really stumping them why I have AMD.
  9. Oh boy. I think I answered my own question. I looked up foods high in iodine after reading a bit more here. First off I had an omelet Thursday night. Then Friday night I had Sushi. What is #1 on the list I read? Seaweed! Am I on the right track? Would it show up that fast? I dnol't have oozing blisters (that I have noticed)
  10. Hello! I have been on and off these boards for years, because I keep coming back to having signs that point to Celiac. It all started 10 years ago, I had just weaned my daughter and hormones resuming their cycle. I woke up one morning feeling like I had a stomach virus and struggled for the next 2 years with intense nausea, fatigue, anxiety, insomnia. I lost 15 pounds and then gained more. I'd not eat for days, then eat again because the nausea went away, start again with the nausea and repeat. I gained weight. My husband and I decided to do "South Beach" and for the first time in YEARS I felt good. A gluten connection was suspected, but my doctor had written me off as a nutty basketcase. I pressed him to do an endoscope, but was ill-informed and had eliminated a lot of gluten products. It came back negative and he told me I do not have Celiac disease, that I was depressed (YOU THINK?). I know the obvious answer would have been to eliminate gluten but to be honest, I couldn't do it. Without a "confirmed" diagnosis, people just thought I was crazy, and the effort collided with my family life. So I learned to walk the line - I knew my major triggers (condensed soups, seasoned and packaged things, processed meats) so I avoided THOSE. For the past year I have been avoiding processed stuff, but not necessarily eliminating gluten-containing foods and I feel fairly good. However, I have episodes when I eat poorly for repeated days in a row - mostly holidays and such with repeated meals that I don't prepare - where I get what I have always termed "hives". They are nearly always on my feet or lower legs, and they tingle/burn like fire ants but itch like MAD. Worse than black fly bites at their worst. I won't get loads of them - a cluster or two on the arch of my foot, between my toes, on my ankles, sometimes my hands. They welt up like hard pimples and then I scratch them to scabs. I have finally come back here to look for pics of DH and caught something about MSG and salicylates, and this makes a little sense. For the past year I've known that bread alone isn't that bad of a trigger, but if I have something with what I term "chemicals" in it, I am in big trouble. So can someone please tell me if it makes sense that I would be able to eat some gluten here and there and be OK, but if I have gluten PLUS chemical-laden food that it would trigger a DH outbreak? To be honest, I know mentally I would eat very well if I had a confirmed diagnosis, and that would be accepted. For 10 years I've been considered the wacky one in the family that chooses not to eat certain foods when there's nothing "really wrong" with me. If I knew it was likely, I'd schedule an appointment with a dermatologist and load up on the foods I know would cause this a week before and walk in and ask for a biopsy. I've never deliberately tried to set this off, but I think I could. Suggestions and comments welcome.
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