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Sienna2013 last won the day on March 9

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About Sienna2013

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  1. I can't believe your husband is blaming the T1Diabetes diagnosis on you! (I noticed you said "my" changing his diet, not "our" changing his diet.) This is the same husband who is a diagnosed celiac yet opposed screening the kids, right? I imagine he is subconsciously trying to displace the guilt he feels onto you, but WOW that is not fair. My heart goes out to you and your family - that is a lot to deal with, and I hope he is able to pull together with you instead of fingerpointing as you all learn to manage your son's (and other children's) needs. (Also, it seems very unlikely that your son suddenly became diabetic overnight. I agree with the other posters who believe that it is more likely related to longterm undiagnosed celiac disease.)
  2. I second Beverage's comments, and wish you strength. FWIW, my kid was heading toward being hospitalized for psych issues before someone finally thought to screen for celiac. Part of the reason I'm active on this forum is to help raise awareness, with the goal of saving other people from some of the pain our family went through over the decade between when issues first cropped up and when someone finally thought to order the blood test.
  3. PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain, stomach cramps, and fibromyalgia.
  4. I'd suggest screening them all (as noted above, screening all first-degree relatives is the standard of care when someone is diagnosed) *and* going gluten-free whatever the results. Odds are that one or more has active celiac (it can cause behavioral and physical symptoms like those you describe), and it will be much safer for the celiacs in the household for the whole house to be gluten-free. As long as your gluten-free diet is mostly based on whole foods (meat, fish, veg, etc.) and not on gluten-replacement foods (gluten-free pasta, gluten-free bread), there's no real downside for those who tolerate it fine, and a big upside for those who don't. (Our household: 2 celiac kids; mom and dad each with a different celiac gene but neither had elevated TTG-IGA when we were all screened when kid1 was diagnosed; mom has an autoimmune condition so depending on what you read should be off gluten anyway; whole house is gluten-free because both kids react strongly to even tiny cross-contamination, and we want home to be a haven for them.)
  5. @Ecgmmom - At least you figured it out when she was 7 - took us until 12 Not a doctor, but based on the muscle tension mine experiences I would say test out magnesium supplementing. Magnesium glycinate, a couple of capsules with meals - according to our doc (who has her at 4 capsules daily, which is a little over full RDA), she may not be absorbing it all, and if/when it does become too much, she'll get diarrhea so you'll know it. One of my celiac kids is tense all the time, worsening upon gluten exposure; the other celiac kid has bad back pain when they get glutened. Do you mind sharing which doc you have at Stanford? We are bay area as well and I'm looking for a second opinion to help with ongoing neuro symptoms in one kid. UCSF has been no help and I thought Stanford might be, but if they don't recognize muscle cramping as a possible indication of magnesium deficiency in someone whose ability to absorb nutrients is almost certainly compromised (i.e., any recently diagnosed celiac), then I doubt they'll have much useful help to provide on the neuro front. ( @desirun would you mind sharing the name of your celiac specialist who understood about neuro / mood effects? Were they able to do anything to help?) Until then, I wouldn't bother to eat out unless you can watch the food prepared or the place is 100% gluten-free. Five Guys is pretty good, in our experience, and there are a couple of 100% gluten-free places in SF if you don't mind traveling. Otherwise, bring a meal from home if there is a family dining-out event; your doctor should be willing to give you a doctor's note to bring along in case the restaurant gives you any heat. (We printed a reduced-size one and laminated it.) Good luck! Make sure to sign her up for Camp Celiac if you didn't already do so, too! https://www.celiaccamp.com/
  6. No specific recommendations, but you might look into finding a functional physician - they'll work with you on nutrition. In case it's helpful, my kid has psych effects from gluten; she also is likely low on magnesium and def low in Vit D, so we supplement both (magnesium glycinate from Pure Encapsulations specifically). She also swears by kombucha for its probiotic effects - really prefers it to regular probiotics and other meal sources. Hope you feel better soon. It's a tough road.
  7. Plus one to Teagan's response that this might help her anxiety; long-undiagnosed celiac disease turned out to be a significant factor in my DD's anxiety (age 11 at diagnosis, now 12), and she's slowly improving the longer she is gluten-free. I wouldn't sugarcoat it or lie about it. She's old enough to understand the basic function (BeyondCeliac has a video that explains it, too), and like JMG said, in some ways it's great news, because you have a path forward to her feeling better. One thing to do right away - look into "camp celiac" - there are at least a few gluten-free camps for celiac kids (various locations across the country), and if you get on it right away, you might be able to get a spot for her. Mine really liked it last year - great to be able to relax about food for a few days and meet other similarly situated kids. (Seriously, research and apply for those today to maximize chance of getting her a spot.) You might also ask your doctor about supplementing - mine is on vitamin D and magnesium, both things that can affect mood/anxiety if you're low on them, and celiacs are apparently often deficient in one or both. According to my kid, kombucha helps her feel better too (obvs the low/no alcohol kind, not the one you have to be 21 to buy!). I would prioritize getting her to understand her diagnosis, how it affects her, and why she needs to be rigorously 100% gluten-free, and generally make sure sue is completely on board with it -- because in 5 minutes she'll be in middle school and much more concerned about peer pressure, fitting in, etc. At that point, it will be much harder for her to turn down the "gluten free" pizza (which really isn't gluten-free due to cross contamination, so it's not safe for her to eat) when she's out with her friends at the pizza parlor if she hasn't already internalized her new reality. I also agree with JMG that she will probably have much stronger reactions if/when she gets glutened after having been a while gluten-free than she currently does. On the bright side, this is a great time to be a kid chef - see if you can springboard into an interest in cooking, so she can prepare such awesome lunches, snacks, etc., that it'll be her friends wishing they could eat like her instead of vice versa. Lots of fun cooking shows you can watch together Definitely spring for a really nice lunchbox, thermos food jar, etc. -- she'll probably be bringing food from home for the foreseeable future (to school, to parties, etc.), so do whatever you can to turn it into a positive instead of something that she feels bad about. Hope that helps! If she would be interested in a pen pal, I can ask mine if she'd be willing to serve as a penpal/peer mentor/listening ear - just let me know.
  8. Is it possible that your lab's TTG-IGA test's ceiling (250) is low enough that it's making it hard to measure your progress? At our lab, the ceiling is 3,000; my kids were diagnosed around the same time as you with results over that ceiling (>3,000) and have registered results in the 300s and 200s (which would for you still show as "unknown number above 250") as they progress downward. They've made it to the double digits now, so their levels are going down faster than yours - so you may be getting some gluten in your diet or just healing more slowly - i.e., your levels are coming down, you just can't see it on that test yet.
  9. FWIW, our ped GI was firm that all first-degree relatives needed to be screened, whether or not they were symptomatic. (Our family is tall too - in fact, our kids' continued growth delayed their diagnosis because their ped took it as an indicator that all was well and didn't think of celiac - it was a psychologist who recommended screening in our case.) Also, celiac can be asymptomatic. I read several articles about the recent study about hypervigilance (keep meaning to look up the study itself, but I ran into a paywall) and found it very frustrating, because as far as I can tell they didn't take the obvious step of assessing the extent to which an individual's severity of reaction affected his/her level of vigilance. This disease seems to affect everyone differently. If all mine got were tummy aches, we wouldn't be terribly strict (boy, don't I wish that were the case?). Unfortunately, both of mine react psychologically, as well as physically, to even minor glutenings: in addition to a few days of explosive diarrhea (= no school), they manifest irritability, anxiety, depression, and (for one kid), have experienced suicidal ideation and self-harm. So, yeah, we're vigilant, but I wouldn't say it's "hyper" vigilance.
  10. Updating: while her levels are not yet down to normal, she is improving. Things that seem to help: - Time - Strict gluten-free diet (obvs) - Supplementing Vit D and Magnesium (we are currently supplementing magnesium glycinate 3 capsules (= 90% of RDA) - Kombucha - she swears it is helping her stomach, and she doesn't like yogurt, kefir, pickles, etc. If it works, great! and if it's placebo effect, that's OK with me too!
  11. Sharing my experience: both of my kids (K1, girl, then 11, and K2, boy, then 10) were diagnosed within a month of each other last year, both of them with off the charts TTG IGA levels. Kid1 had been putting on weight - went from average range to 15-20 overweight - and had a bizarrely insatiable appetite in the 6-9 mo leading up to diagnosis, among a bunch of other difficult behavioral issues. Like, she would have 3 or 4 full plates of something (more than I can eat, and I'm quite tall with a very healthy appetite) every night at dinner, and pitch a fit when I cut her off because she said she still felt hungry. (Cue parental speech from me about how something must not be right, because her stomach cannot possibly still be hungry, so let's wait 20 min, etc. ...) Left unchecked, she would've eaten herself into seriously overweight territory because of what celiac disease was doing to her appetite, gut, and brain; my guess is that it was a combination of malabsorption driving increased appetite, and pain misreporting itself as hunger, but I really don't know. As of today, a year later, her antibodies are down to only 4x normal and she is starting to slim down naturally without any huge effort or changes other than eating healthy and starting to do more activities than she used to (because she's starting to feel better and has some energy now). She occasionally worries about it (middle school ...), and I reassure her that it is nothing to worry about - it'll take care of itself as she continues to grow and to heal. At the same time, K2 had been getting skinnier and skinnier as he went through what we thought was a series of stomach flus, with diarrhea and vomiting. Nope, turned out to be celiac! He has slowly been putting weight back on and has gone from stringbean to healthy slim. He's due to get his labs drawn soon; I'm guessing he's at close to normal but not normal yet, as he still is low-ish energy and complains of aches and pains. TL:DR - There is a lot of variation, and celiac disease can cause overweight as well as underweight, even in the same household.
  12. It's not error-proof and doesn't test all variants; it reported, correctly, that I have one of the variants, and kid2 has one of the variants, but kid1's report did not note a higher risk (and she is oh-so-celiac - off the charts TTG IGA when diagnosed). So, don't take a negative report as an all-clear - it's limited in scope, and honestly I wish their materials were clearer about this.
  13. The coverage of this study irritated me (to be fair, I haven't read the underlying study itself) because from the news articles, it is not possible to tell whether the extreme vigilance is just individual variation in how seriously people take the gluten-free diet (IOW: "wow, some celiacs sure are neurotic, they're making themselves crazy!"), or a completely reasonable and learned response due to variable sensitivity to gluten. In other words: my belief is that if you are very sensitive to gluten, then yes of course, you will be extremely vigilant, and probably your QOL will suffer as a result. If you are less sensitive (or less symptomatic), then your trigger threshold is higher and you will experience reduced / lower intensity / less frequent symptoms, so consequently, you both (a) have a higher QOL in general, and (b) can afford to be less vigilant. But from the study, it sounds like "hey, if you take it too seriously, you'll drive yourself nuts", with the implied conclusion that the stricter celiacs should maybe just chill — that's just so wrong! I've read *many* of the studies about celiac and anxiety (my 2 kids were diagnosed with celiac disease last year, one of them (kid1) with super severe anxiety, and we are seeing how staying gluten-free is helping her slowly improve, particularly combined with supplementing vit D, magnesium, and probiotic in the form of kombucha). I am unimpressed with the poor analytical approach I've seen in some of them, which tend to amount to "OMG, having celiac disease and trying to follow a gluten-free diet is stressful." When is a research team going to try to disaggregate, and study/document, the different types of anxiety and depression involved in having a celiac diagnosis? I count at least three: - inherent anxiety caused by systemic inflammation, gut damage, and malabsorption (i.e., individual just has a low hum of anxiety going all the time, like their anxiety thermostat is set unusually high - this is part of kid1's issue) - the (quite reasonable) risk-averse practical anxiety that comes with following a gluten-free diet and trying to avoid getting glutened in a gluten-filled world (this affects kid2 more than kid1, who tends to live in denial on this point a little bit) - general social/hassle - the anxiety and additional emotional burden that comes with trying to live a normal social, family, and business life while having a significant food-based restriction (this one bothers kid1 (and me, as the parent) more, since apparently pizza is the default celebration food so every birthday party is an occasion for tears and negotiation over what her substitute meal will be (kid1 has champagne tastes, so just saying "frozen gluten-free pizza we bring from home" doesn't satisfy her - she wants something so awesome that not only won't she feel left out, but the other kids might envy her a little bit - which I can understand, and actuallyy support in the day-to-day lunch context, but not at someone's birthday party). Curious what others think about this. Maybe we should write some celiac centers with proposals.
  14. Parent of two celiac kids here. You are getting great advice; here are some things we've found helpful: - Give some real thought to taking the entire house gluten-free. It's just not worth the stress, for me, of worrying about cross contamination. Also, your other kids are at higher likelihood of having celiac disease, so you may end up 100% gluten-free anyway. (Honestly, it's great in a way that both of mine have it - they have each other's backs, and no one else gets what they're going through quite like their sibling does.) - Your doc will likely recommend having the rest of you screened (assuming you're biologically related, vs. adopted/foster). Insist on this, even if they don't suggest it - all first-degree blood relations should get screened. Best time to do it is right now, when all of you have been eating gluten regularly. - Walk away from pasta (even gluten-free) for a while. Instead, cook like my great-grandma did: meat and potatoes, chicken, squash, occasionally rice, lots of green veg. (Oh, and turns out it's not that hard to make french fries, actually! But definitely a special treat, not an everyday food - kinda messy.) - Meet in person with the teachers, lunch team, administrators, etc., and send an email around to the other parents in your daughter's class. Tell them why she's gluten-free, & what that means logistically, and also ask them to help their kids understand, to protect your daughter against the possibility of teasing from ignorance. Work with the teachers to leave some shelf-stable treats (Tate's cookies, etc.) at school so they have something for her when some well meaning parent brings in cookies or donuts for a treat without giving you a heads up first. - Lunch, for us, switched from "something you buy at school, or a sandwich" to "last night's dinner, packed in a Thermos to stay warm". - Shop the grocery perimeters. I sometimes end up with nothing but meat/fish/chicken and produce. - Read labels and watch out for wheat in the weirdest places. For example, Whole Foods has "may contain wheat" disclaimers in their frozen shrimp, frozen spinach, mixed nuts, etc. - Rice Krispies are a trap for the unwary - they contain barley malt. However, Starbucks' version of a rice krispy treat is gluten-free (yay!). - Ditto oats. One would think they're naturally gluten-free, but nope. We're staying mostly off them for now, and when we do eat them, it's the certified gluten-free kind only. - Look out for unexpected sources - for example, sorry to say this, but you'll need to throw out the Play-doh. Our art teacher said she used corn starch, not flour, for papier mache, so you'll want to check that your child's art teacher does as well. - Go in phases and adjust based on how she's doing. My two keep experimenting: we've had one kid on dairy, off dairy, on eggs, off eggs. Both currently supplement with Vitamin D. One supplements with magnesium glycinate (which seems to be helping a lot of behavior/mood symptoms, thankfully!). One likes probiotics; the other says the priobiotic chewables and capsules make her stomach hurt - but she loves kombucha and says it makes her feel better. - Don't believe, or at least be VERY skeptical, of regular takeout/delivery pizza places that offer gluten-free dough. The dough may be gluten-free, but the pizza is 99% likely to get cross-contaminated during prep/baking/serving. We just go with frozen - you can make it fun by buying every gluten-free pizza your grocery carries, and getting the whole family involved in Pizza Tasting and Rating Night. - Haagen Dasz has many gluten-free flavors! Not sure why the label is so tiny, but it's there if you look for it. - If there's a Five Guys near you, it's your new fave burger place. The kids can eat the fries because they don't have anything battered cooked in the same fryer. Same for In and Out (but 5G is better). - Find Me Gluten Free app is a terrific resource. Nima, the food testing people, are also rolling out crowdsourced testing results - early, but promising potential resource. Good luck!