dopaminegirl

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About dopaminegirl

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  1. Apologies for my over-reaction. As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better. My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life. In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms. Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.
  2. The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility. Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me). Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING. I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition. https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal. I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking.
  3. dopaminegirl

    Celiac and dairy

    I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share. There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point. Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese). Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen. A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese. I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein. However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could. Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave. So that's my story. Almost too crazy to believe. TL;DR: Black and white cows make me sick, brown cows are my friends.
  4. I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal. http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself.
  5. I've actually been glutened by shampoo with hydrolyzed wheat protein, and I wasn't even the one using it. It was my husbands! I swear I don't go around eating my husbands hair. I am pretty sensitive though, so it's entirely believable that the trace amounts in his hair were getting onto his and my hands and then making its way to my mouth, etc. etc. It was a slow and steady low grade glutening that eventually built up to something that I was able to recognize as more definitively "a glutening". Once we ditched the shampoo and I recovered, I realized that I'd been feeling it for weeks. It's going to depend on your level of sensitivity, but even if you don't feel it, it could still be doing damage. Also... I second that. Starch is a carbohydrate, protein is a protein (obviously), there is no simple process that would convert one into the other. Also, as gluten is a protein, converting starch to protein wouldn't be expected to do anything to gluten ANYWAY. Speaking as a biologist here. I call poppycock.
  6. I love light yoga when I'm recovering from a glutening. I understand how hard it is to get back into exercise when you're just beginning to recover. I find that yoga engages my muscles in a pleasant and non stressful way and it definitely helps with the aches I usually encounter post-glutening. I try to walk as much as possible, take the stairs. Exercise (as long as you're not overdoing it) is anti-inflammatory, so any bit you can do is going to help you feel better faster. Remember those endorphins too! Working your muscles will give you a mental boost as well. With regards to realizing how weak you've gotten, I have two things to say: 1. I had this problem too. I went from strong and muscular to pretty feeble over the course of getting diagnosed because I never had the energy to exercise. Once I started exercising I was disappointed to see how much ground I had lost, but I also knew that I had been strong before, and that I'd be able to get there again. I'd struggle through a workout or encounter an exercise I couldn't do and just remind myself that I'd get there eventually. 2. Don't think of yourself as weak. You just had to spend a fair amount of time being strong in other places (mentally, emotionally) while you were getting diagnosed/coming to terms/coping with this disease. You are strong. You've had to face a special kind of adversity that many people never encounter. Remember that strength, and use it to work on getting yourself healthy again. It will be worth it.
  7. Some of the artificial sweeteners used in gum are actually used as laxatives in larger doses, especially the sugar alcohols (usually ending with -ol, e.g., sorbitol, xylitol, erythritol). We also tend to have more sensitive stomachs, so it might not take much to set yours off.
  8. There is some very interesting research out there with regard to the benefit of Omega 3s for inflammation. Most of these clinical trials use doses that it would be difficult to achieve with diet alone. I personally take fish oil because generalized inflammation seems to be a big problem for me. As long as you're taking a gel capsule you can see through, you shouldn't have to worry about any fillers with gluten in them. I've looked at some consumer watchdog reports and the big brands are all pretty accurate in their ingredients/percentages. I haven't been taking it for long, only a couple of weeks, but I got glutened a couple of days ago and the reaction seems to be less severe than it used to be, though to be fair, I've made several lifestyle changes lately that could be contributing to this. My thought is that as long as the fish oil isn't upsetting your stomach and it's a financially viable option, it's one of those things there's really no harm in (as opposed to a drug with side effects). Edit: Answering your other question, generalized inflammation can trigger some fatigue (think about the way your body tells you to rest and sleep more when you catch a cold), so reducing it may work in the other direction. But you should also try to make sure you're getting all the nutrients you need.
  9. dopaminegirl

    Restless Legs Syndrom (rls)

    RLS is significantly more prevalent among the celiac population than the general population, so I think there's definitely a correlation. Unfortunately, it doesn't aways go away once you go gluten free. There's also a link between RLS and inflammation, and, for me at least, most of my post-glutening symptoms can be linked back to generalized inflammation. For me, RLS is one of the first indications for me that I've been glutened (right after arthritis/muscle aches and dry mouth), though it's more of a "restless body syndrome" since it doesn't confine itself to my legs. I'm fortunate that it goes away as long as I'm gluten-free, I know many people aren't so lucky. This last time (currently recovering from being glutened at Thanksgiving *sigh*) I ended up getting up and playing video games till 4 in the morning. In retrospect, I probably could have used that time to do dishes or something more productive... Only thing that ever works for me is to get up and move around and stretch as much as possible, I've been known to do some 2 am yoga, I know my dad used to go for walks around the neighborhood. Don't resist it, don't lay in bed and try to stay still, I really think that's the worst thing you can do. Get up and use your muscles and tire them out and hopefully that will help. If you have flexibility in where you have to be and when the next day, you can always try to do productive things and then sleep in once things have calmed down. Otherwise, caffeinate the next day and hope the next night will be better.
  10. Hi Dave, I'm glad your starting to feel better. My gluten challenge did a similar thing to me, and low fodmap is the only way to get relief. I did learn from past experience that eventually I'll heal enough that I can start eating normally (minus the gluten). Do onions kill you? They destroy me. I look forward to the day that I can eat JUST gluten free, without having to worry about all these other random foods that send my stomach into fits of rage. Next time you get glutened (it's inevitable) and get that itchy rash, you should try to get it biopsied. It sounds like potential Dermatitis Herpetiformis. If it comes back positive, then you're one step closer to knowing that you likely have celiac. On it's own I don't think it will be enough for a firm celiac diagnosis, but from what I understand, it's a pretty strong indicator. Make sure they do the biopsy correctly: From celiac.org/celiac-disease/dermatitis-herpetiformis/ "It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits."
  11. For the curious, I want to add that I had elevated liver enzymes (AST and ALT) back in October, when I was only recently gluten free. They tested for everything that could possibly cause elevated transaminases (fatty liver disease, hepatitis, Wilson's, Lupus) and found nothing. The enzymes were back to normal in February after a couple months gluten free. I recently read a recommendation for doctors that patients with unexplained elevated transaminases should be tested for celiac. Apparently it's a relatively common manifestation. So there's that too.
  12. Thank you everyone. Finally got to see the biopsy summary for myself. He took at least 6 in a duodenal sweep, and 6 from the bulb. It looks like the increased intraepithelial lympocytes (Marsh I) were fairly diffuse across both. I've asked how the IEL counts compare between this biopsy (post gluten challenge) and my first biopsy (6 months gluten free). Hopefully he'll get back to me soon. He's usually pretty patient with my obsessive need to know the details... I'm so curious about my condition. I wonder if the stomach bug that triggered all my problems last year really was when my "celiac" started, and that the reason I don't have more definitive results are that I didn't give it time to progress to that point. The only way to find out would be to keep eating gluten, and that's a non-starter. For now, I'll consider myself one of the lucky ones: fast diagnosis, minimal damage, and I don't seem to be hypersensitive (so far). Two weeks gluten free and I actually felt good enough to attempt exercise last night. It was amazing. I've also been more productive at work, and I've actually been accomplishing some of my chores at home, including taking back some of the cooking responsibilities from my husband. I'm avoiding onions like the plague: I redeveloped an intolerance for onions during my gluten challenge, but I'm hoping it goes away while I'm gluten free. Husband and I have been working on deglutening the kitchen, we've switched toothpastes, I'm working on talking to my pharmacist to make sure my meds are gluten free.... My stomach is behaving, my joints don't hurt, my headaches are decreasing... There's a part of me that feels like a fraud, saying that I have celiac. But I'm seriously gluten-free, I'm not going to cheat, I'm not going to say "Oh, a little CC is okay, I'm not THAT celiac," so I don't think I'm adding to the problem that so many celiacs face (fad dieters). I'll advocate like my life depends on it (which it might). Anyway, thanks for all the guidance from this community. You guys are life savers that have made it so that I don't feel alone or silly or like a hypochondriac. I only hope that I can return the favor. I'm getting my PhD in Pharmacology, so if anybody needs medical language translated to something normal people can understand, I'm happy to help!
  13. So, after a murderous 7 week gluten challenge, my bloodwork came back negative (DGP, TTG and EMA). My EGD showed increased epithelial lymphocytes, and other tests have ruled out all the other possible causes of IEL. Between my symptoms when I was eating gluten, my positive genetics, and the lackluster biopsy, my doc has decided that we should treat this like celiac disease. It's not the rock hard certain diagnosis that I was hoping for, but I was going to go gluten free anyway, and I'm not willing to eat any more gluten just to be more certain. So I guess that's that. Hopefully I can start feeling better soon.