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Celiac's Wifey

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Celiac's Wifey last won the day on August 19 2017

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  1. Celiac's Wifey

    New diagnosis: how long to transition?

    My daughter has dermatitis herpetiformis (the rash for celiac). Three days after my daughter went gluten free she got huge new rash patches behind both armpits where they meet her back -- one of the same places her dad's DH had showed up decades earlier. We had never seen the rash there before. This is not a scientific explanation at all, so please don't take it as one, but more of a description or impression of what I felt looking at those new rash patches -- I almost felt like it was because her immune system was reacting to less gluten -- and because it wasn't everywhere, her bodies cells focused on hidden deposits of it that it hadn't attacked before. As if her immune system cells were free to react stronger to the gluten/gliadin that was still present because it was less stressed overall by divided gluten/gliadin deposits sneaking everywhere. It took us about two weeks to get gluten the rest of the way out of the house. This was a manageable timetable for our family, including getting the new toaster, though we were being careful about her as soon as we knew. For your daughter's health, probably the sooner the better. Best luck -- and I hope she's on the mend and feeling better soon.
  2. Celiac's Wifey

    Gluten And Violence

    I know this is an old dead thread, but it really got to me, because I hadn't seen it before, and it makes me think of my oldest daughter, in a way that makes me feel really really sad. Louis, I am glad you have figured out that gluten was giving you neurological symptoms. I hope you are on the mend. Ennis, your posts have been so helpful to me on this board. In particular, your reply to my rant about diagnosis was so kind and was part of my path to committing to getting gluten totally out of our house for the sake of everybodys health. I have described my daughter like this. Like sometimes her mood swings were so extreme and would just come from absolutely nowhere. I have parented pointing out the "mean" she gets, and how it doesn't even seem like her, and how it seems like she really can't control it, and she has cried about it, and we have cried about it together and her sisters have definitely cried about it (because they are often on receiving end) and I just want her (and all of you) to be well. I went back and look at my first post to this board in 2009, because I have no idea what I had posted. So back then, when I knew basically nothing, and I was pregnant with her, I had asked if I should go gluten free for the pregnancy. And someone on the board said I should consider it, but my OB said it wasn't necessary.... and if I could go back in time I would tell myself that for her health I should. In her case, seeing her sick at seven.... wondering how soon her bloodbrain barrier was affected....remembering her personality changes around age 3 and 1/2 and chalking it up to other things.... I hate gluten.
  3. Celiac's Wifey

    Am I Celiac?

    Hi Brass, As you suspect thyroid disease, other autoimmune, GI issues including constipation, brain fog, fatigue, joint pain, the vitamin deficiences and more can all be closely associated with undiagnosed celiac disease. I think you posted here to confirm your 'gut feeling' that your health just isn't right, and to figure out if this is the likely cause. This link might help you sort through that: https://celiac.org/celiac-disease/resources/checklist/ I think you don't need to actually register and print out the full checklist to find it helpful -- just seeing in print 'commonly associated' may help with the process of gearing up the energy for appointments & med tests. As for your Q title? I'd say, quite possibly. It is about a 1 in 100 chance even if you are 'symptom free' and with a family history of autoimmune+many potential symptoms... I'd say it is not at all unlikely. You might want to go in requesting a full celiac panel just so you don't have to double efforts if you get an equivocal result. My husband & at least one daughter are celiac, and the others girls are at high risk because of the superstrong family history. As someone who just went gluten free and made our whole house gluten free (crosscontamination for confirmed family members and broader health concerns about my own autoimmune system/ family history+finding out I have at least one permissive gene) I'd say nowadays the diet is not-so-bad compared to the many myriad health problems you will face if you stay in denial. (My husband has sortof sad-hilarious horror stories about trying to eat a GFD thirty years ago when he was first diagnosed.) Before your testing though, eat a tasty French croissant for me. That may be one of the only things I will truly miss..... Good luck on your journey!
  4. Celiac's Wifey

    Insight on biopsy and protocol

    For many years endoscopy+biopsy was considered the 'gold standard' of celiac diagnosis. That perception has been changing in recent years as multiple studies have shown higher disagreement rates for endoscopic biopsy results than expected between GIs, as more research into early stages of celiac disease have been conducted, and as more information has come in about the efficacy of various blood tests. However, most doctors still currently feel that a positive biopsy is absolutely needed for a clear diagnosis (even though the medical community has been asking if this is indeed true since at least 2010 if not before....). If your question is, should we bother with the endoscopy, I think the answer is (and I am not a medical doctor) you and your son should decide - (in consultation with a doctor you trust, if you are lucky enough to have one). If you do decide to do the endoscopy, your son should continue to consume gluten everyday until the procedure is completed. The other recognized diagnostic cascade is a four-out-of-five criteria described by Dr. Fasano (a well-respected leading celiac researcher) here (and in other med papers, but I found these interviews really readable: http://www.tenderfoodie.com/blog/2011/12/22/interview-w-dr-alessio-fasano-part-2-how-to-get-tested-for-c.html If you feel confident he's meeting that, maybe there is little reason to further imperil his health by eating gluten for the next couple weeks. On the other hand....if it turned out to be something else, you may also want to know, given his diabetes. Some types of diabetes and celiac seem to have a close relationship (both my FIL and my husbands first cousin have confirmed both and there are many links in the med lit.) It seems like he is probably really used to monitoring his diet and paying attention to what he eats, so in some ways the transition to a GFD will be simpler for him than for other newbies. It is important to recognize that celiac and wheat allergy and two different responses to different components of the grass family that contains wheat. Here are some links that highlight the differences: https://www.foodallergy.org/common-allergens/wheat https://www.gluten.org/resources/getting-started/celiac-disease-non-celiac-sensitivity-or-wheat-allergy-what-is-the-difference/ About the plastic -- I think for cutting boards and colanders the consensus is a definite yes. They are just so likely to harbor problems in grooves and cracks. For knife handles there is more disagreement. If you check the celiac: parent of child board there is actually a really good recent thread discussing these issues called 'mom of newly diagnosed five year old' Good luck to your son -- hope he is feeling better soon!
  5. Hey, I understand your frustration with how this disease is diagnosed, especially for kids, and I'm sure just about everybody on the board has had experiences of frustration with the diet and the lack of clarity surrounding so many of the associated symptoms. Even the best experts describe this disease as a "chameleon" and can admit that it is diagnostically difficult. In addition, some recent research suggests that the adaptive form of celiac disease might actually be triggered by a virus in genetically predisposed individuals so it is possible that the virus you described actually triggered celiac disease for your daughter : https://news.uchicago.edu/article/2017/04/06/seemingly-innocuous-virus-can-trigger-celiac-disease I also know that they are continuing to make advances in the testing, including potentially being able to better test those already on gluten free diets - so maybe she could be effectively retested sooner than a lifetime. I believe the tests and diagnostic information for this disease will be substantially better five years from now than they are today. I read your daughters symptoms and they seem serious. Peripheral neuropathy indicates that her autoimmune imbalance is attacking not just her gut, but also her central nervous system. (Celiac disease is a common cause of peripheral neuropathy). The headaches suggest that hypersensitivity to gluten may be affecting her blood-brain barrier, and affecting her neurological health as well. You also said that her symptoms appear to be resolving on the diet. As tough as the diet is, maybe that is the most important thing to know right now. That and the reality that there is lots of medical evidence that having this disease and not appropriately treating it with a gluten free diet increases the likelihood of many many other horrible health complications, from major depression and anxiety to cascading autoimmune disease. Comparing the frustrations of the diet to those outcomes, maybe helps strengthen the resolve to keep the diet carefully in place. Best wishes that your daughters health will continue to improve -- and know there are lots of places to find good tips and support for the diet. I'm sure others will chime in.
  6. Celiac's Wifey

    Anemia + High ANA?

    She actually has gone to the pediatrician (maybe three times? I don't know...) At first, thought was that it was from a virus going around. Then when it still seemed persistent they thought it was because she had been milk allergic as a toddler, but they had reintroduced and it had been fine for a couple years. So the thought was that milk protein was bothering her again, so they actually removed that next, but it didn't get better. So that is why the celiac tests + blood count + ANA test. I think it was the TTG and DGP tests so those are pretty good, so it should shift suspicion away, but since it is only GI bothering her and friend knows I have been obsessively reading all thing celiac.... Meanwhile because I have been reading all things celiac, I do not think I am the best friend to ask, unless my friend wanted confirmation bias. I (only sorta kiddingly) actively think everything wrong with the universe right now is probably somehow glutens fault.... (like bad fruit salads? probably because an undiagnosed unwitting celiac who is having the memory symptoms completely forgot that they hadn't washed the fruit....or their hands....after their home fecal transplant.....GLUTEN is to blame!!!) Ha...see above. I am sure that's true....but am still slightly suspicious. Thanks for the good quotes and links. I'll mention a bit more about it to her and will be curious what the rheumatologist eventually says....
  7. Hey, It sucks you have been sick so long. I was thinking food poisoning too when I saw your first post. (One year at my school PTO volunteers brought in dinner to teachers with a fruit salad bowl and literally every teacher who ate it was sick that night - one was hospitalized! I have been super suspicious of fruit salad sitting out ever since.) This has been going on so long it doesn't seem like it could be that unless ? if celiac had depleted your healthy gut biome, you might have gotten colonized by a bad bacterial e.coli strain? Maybe? I read this thing about ESBLs and thought maybe you should have a doc investigate incase you do need treatment for it: http://www.healthline.com/health/esbl#overview1 (I have no idea if it will be helpful, but I can't imagine ongoing d is much fun during a work day either....) Good luck! quick p.s. my Auntie swear honey is the best way to tackle D. If you do a quick search you'll find a million site and suggestions for taking it.....
  8. Hi- So asking for friend. Daughter is seven - family history autoimmune (mom is hashimoto's + adopted gfd almost three years ago and never looked back, even though she herself was never formally tested). Daughter has been having chronic stomach pain + nausea for several months She was just tested - celiac antibodies came back negative but she had low blood count (anemia) and really elevated ANA (antinuclear antibody test). Did anyone else test this way at first or have a kid later diagnosed that tested this way? (Pediatrician wants mom to follow up with rheumatologist, and she is planning to, but appointment is two and half months out. In the meantime, she really feels like her daughters symptoms are all GI, so she keeps circling back to wondering if celiac and/or ncgs is effectively precluded or not. She asked me what I thought, and I straight up told her I don't think I have any objectivity about gluten right now. But I thought I would ask the board if anyone else showed up w/ their gluten problems this way first....)
  9. Celiac's Wifey

    Still in pain after a year?

    So sorry you aren't feeling well. Ravenwoodglass gave a really great list of things to check. I just thought I'd add, in case it is at all reassuring, that depending on the person, nerve damage and skin symptoms can take longer than a year to heal; if the rashes are DH, it can take up to two years on a gluten free diet for your body to clear it - https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/dermatitis-herpetiformis/ I hope you will find a way to feel better soon.
  10. I am seeking more info from seronegative celiacs (celiacs where the blood tests did not show it) but later biopsy confirmed & from NCGS diagnosed whose symptoms were allieviated on the gfd What blood tests for celiac disease did you do? / Were your numbers totally low / normal? Were you gene typed? What were your results of gene typing? I'm especially curious to try to get a sense of if there are other DQ7 types out there who were seronegative.... but had symptoms resolve on the diet. Also were any of you ANA tested? (Asking because my kids are at risk. Half my husbands family are biopsy-confirmed celiacs - but most with weird paths to diagnosis - he was confirmed through DH skin biopsy / his sis never had a positive blood test but had tons of Marsh III lesions at time of endoscopy / first cousin had one equivical positive blood test as teen, when no damage was found on initial endoscopy doc advised her gluten was fine -- six years later new endoscopy showed major damage. Curious if there is a tie between genetic types. They haven't all been gene typed but we know my husband is DQ7)
  11. Celiac's Wifey

    Fecal what? Just learned something new!

    This made me laugh. Just picturing bleeding bowls, leeches, and people in funny hats insisting that transferring the fecal matter is a great idea.... On the other hand I once heard a fascinating podcast about a medieval monk's recipe/instruction set that when properly followed today creates an incredibly powerful antibiotic that can kill some resistant bacteria: http://www.radiolab.org/story/best-medicine/ I think in the comments people fact checked different parts of it and took issue with some of the story telling, but I still found it interesting....so many things under the sun....
  12. Celiac's Wifey

    Diagnosis confusion

    RMJ, sorry if my reaction was over-the-top.... like your cat dander reaction? I just want to make sure this mom can be thorough in follow up if she needs to be, because I really do think, based on lots of people in my family, that not knowing is bad news. Of course there are false positives and it was good of you to clarify. (But from now on, I will secretly assume that all cat dander is made out of gluten, and that is why your blood reacted to it..... kidding).
  13. Celiac's Wifey

    Fecal what? Just learned something new!

    Well....my three year old is totally fascinated by poop, too, and also finds it totally funny. She likes to rate whether or not her poop is 'de-cust-ing.' (disgusting) Oddly, this is a label only some poop gets.... I guess poop that cures celiac disease would be not de-cust-ing? I remember reading about fecal transplants a few years ago (not in connection to celiac) and being horror/fascinated like the inappropriate slow drive down / rubbernecking down a highway where you can't help but look... Just the idea that someone thought of the procedure....and then got medical approval to try it.... is totally bizarre/fascinating. Especially because in several specific serious diseases it seems to really work. (!) Jonathan Swift would be proud. (Anyone else remember how often he mentioned poop in Gulliver's Travels?)
  14. Celiac's Wifey

    Clubbed Nails...flattening?

    My daughter has mildly clubbed toenails (can't tell about finger nails because she bites them). I am very happy your nails 'unclubbed.' My daughter has only been on the GFD for a little over a week..... I hope her nails start to grow normally too.... that would be great! Clubbed nails are linked with celiac disease/other GI problems in a couple places. I first read about it on an old post in this site (interesting tidbit on finger/toenails topic) you can also find it listed in a few places as a celiac symptom... here's a couple https://childrensnational.org/choose-childrens/conditions-and-treatments/stomach-digestion-gi/celiac-disease (all the way down the list in skeletal) http://www.nytimes.com/health/guides/symptoms/clubbing-of-the-fingers-or-toes/overview.html
  15. Celiac's Wifey

    Diagnosis confusion

    Best wishes to your family & especially your daughter! I think my daughter's gene test results took about five days. The gene tests generally look for HLA DQ2&DQ8 haplotypes, because these are the best understood genetic markers associated with the disease -- and some of them are starting to be associated with specific types of celiac damage in the med literature (like double DQ2s tend to have severe intestinal damage appearing sooner than other types). But just so you know (not because I want to worry you, but in case your doctor is not aware) there are instances of biopsy confirmed celiacs without those two genetic types. DQ8 is actually a subtype of DQ3 - the three subtypes of DQ3 are DQ7, DQ8, and DQ9. I know of biopsy confirmed celiacs that are double DQ7 and double DQ9, so maybe retain a little suspicion if one of those types comes up. DQ7 has also come up in a large recent Italian study as a separate risk for celiac in addition to DQ2&8. Most places in the U.S. estimate that about 0.4% of celiacs are DQ2DQ8 negative -- that sounds really rare but it actually means one out of every 250 celiacs is 'genetically negative'....so if you put that together with 1% of the population figure.... its still about a million people who have celiac disease, and are DQ2/DQ8 negative, in North America alone. And in Europe the estimates are higher. Most European studies put the number of DQ2/DQ8 negative celiacs at between 2-6% of celiacs. Sorry I don't have Australia specific numbers for you! I really didn't mention this to freak you out, because the first ped GI we saw told us that if our daughter didn't 'have the genes' we didn't have to worry about it....and that turned out to be wrong....as we figured out watching how much sicker she got. She is double DQ7, but is not biopsy confirmed. Her dad is biopsy confirmed, but hasn't been genetically tested -- we know he has one DQ7 allele because of her test, but we don't know his other gene. We have been speculating in our house (with absolutely no medical backgrounds..ha..... but we do have lots of practical experience with this disease....so chalk this up as a semi-domesticated guess...) that the DQ7 types might be carrying the innate autoimmune problem vs. the adaptive type of autoimmune problem in celiac disease. We are speculating this because my daughter is actually, as far as we can tell, fourth generation with this problem - husbands grandmother died of super-rare intestinal cancer after a lifetime of 'tummy troubles' and with a specific type of early onset dementia that has now been linked to celiacs -- she was never diagnosed because it was a million years ago. Husband's father (and his uncle) are both biopsy confirmed celiacs, husband and his sister (and multiple first cousins) are biopsy confirmed celiacs, and now daughter, seropositive on DGP-IgG only, totally symptomatic (including weird things like mildly clubbed toe nails), and two genes just being better recognized as risk types..... So... I will absolutely be crossing my fingers for you, too, that it isn't celiac and that iron makes your daughter 100%....(but I'll also add that something worse than being a celiac and knowing it, is being a celiac and not knowing it. ! Not knowing you have it puts you at increased risk for cascading autoimmune disorders, infertility, miscarriage, cystic acne, neurological damage, (nerve damage, peripheral neuropathy, some types of depression and anxiety disorders)...and a whole list of other horrible things. A celiac diagnosis is really tough, but lots of supportive help is available if that turns out to be the case - and I have great gluten-free scone & butter cookie recipies I'll happily share if you like to bake....