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Celiac's Wifey

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  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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....
  16. Okay, RGM --- but from what I've read this is apples and oranges. They aren't equivalent types of testing, especially when considering false positives. For IgE allergy testing the false positive rates for both the skin prick tests and the blood tests are at 50-60%: https://www.foodallergy.org/life-food-allergies/food-allergy-101/diagnosis-testing/blood-tests The IgE antibody tests you mentioned are well known for and in fact are pretty notorious for being tests that yield false positive results. In fact, a false positive is a likely explanation for a positive IgE allergy test. For IgG 'food sensitivities' the testing error rates are the same. You can have positive antibody results show up on these tests just because your body recognizes a food you have eaten in the past. That is why some people wind up with bizarre lists of dozens of foods they aren't actually allergic to....And it is why elimination trials remain the gold standard in competent allergy testing. On the other hand, the celiac blood tests -- which are all antibody tests (both the TTG tests and the DGP tests which can both be done on IgA or IgG are measuring antibodies) -- are not notorious for yielding false positives. In fact, the opposite is true. They are more likely to yield false negatives -- as in people with biopsy confirmable celiac disease - will not have positive blood tests. The false negative rate for the tests is estimated between 2% and 10% of all celiacs. My SIL is a seronegative celiac who had marsh iii lesions everywhere by the time they finally did the endoscopy. She had symptoms and false negative blood tests for literally decades before she finally convinced someone to do an endoscopy. She was very very sick and suffered multiple other health consequences by not being diagnosed sooner. In addition, a false positive on one of these celiac specific antibody tests is considered rare, estimated between 1 and 3% ....and even experts aren't sure if it is because the endoscopy failure rates are around 4% (the scope just missed the damage) or if it is because the person is NCGS or in early stages and has damage elsewhere but not yet in their intestinal villi. Compare those 60% failure rates on the IgE allergy tests, to this description of the DGP tests --- especially the DGP IgG test that Aussiemom's daughter tested positive for: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3088693/ As far as I understand, the lower sensitivity means this test might miss people who actually have the disease. On the other hand the DGP IgG test is considered very medically specific: https://www.med.emory.edu/EMAC/curriculum/diagnosis/sensand.htm So.... she could take the GIs word for it that her daughter, whom he did not scope, and who is symptomatic, definitely had a false positive on this highly specific test for celiac disease (an unlikely explanation), or she could test more, get a second opinion, and try to figure out more conclusively if gluten is adversely affecting her daughter....which is actually not unlikely. I don't know the stats in Australia off hand, but in North America it's currently estimated that 1% of the total population are celiacs, and more than 80% of them don't know it yet.....
  17. Hi Aussiemom - First up, I'm sorry your daughter is sick. I know that sucks. My daughter had a high test result on the Deamidated Gliadin IgG test (in U.S. called DGP-IgG) and was negative on TTG-IgA with total IgA serum being normal. We have a really strong family history of celiac disease, so we were on watch. Our daughter was given an endoscopy because of the strong family history, and the high blood test, plus atypical symptoms. The scope didn't find anything. We were then told by the pediatric gastroenterologist that the blood test 'might be a false positive or it might be meaningless.' So we sat on that information for almost five months. In those five months I watched my daughter get sicker and develop other autoimmune complications - worsening rashes, pain, worsening bowel symptoms, loss of pigment on her torso, and ultimately the beginnings of impaired thyroid function. I kept searching for answers, reading more, and realizing how incredibly complicated celiac diagnosis can be. Some of the best experts in the world describe the disease as a chameleon -- it can affect any system and hide in surprising ways. In a different post on this forum I read someone describe it as "my celiac disease doesn't look like your celiac disease." This is borne out in my husband's family too -- he, his sis, and his dad are all diagnosed. They all had major symptoms that cleared on a gluten free diet and the craziest part is that between these three closely related individuals they had almost no overlapping symptoms. (Between them they also have multiple other AI diseases and complications - hashimoto's thyroiditis, dermatitis herpetiformis, psoriasis, diabetes, joint issues and skin carcinomas) For our daughter, we eventually retested. Same results. High DGP-IgG, TTG-IgA normal. In our daughters case, it absolutely wasn't a false positive, and we absolutely couldn't ignore the result. I have asked two different doctors at a major celiac center in the United States what a high DGP-IgG result along with symptoms means, and it has become clear to me that even the experts at the center I went to could not provide clear answers. They know the DGP-IgG test is better for catching early celiac in pediatric patients under three, but they don't know seem to know what to do with the test results for older kids. This is a disease where the science absolutely isn't where it needs to be for proper diagnosis. I am not a doctor, and I know there is much I don't know, but my basic understanding of the science is this -- If your daughter's body is making an abnormally high number of antibodies against deamidated gliadin (one of the protein molecules in wheat gluten) then her immune system is recognizing gliadin as an antigen -- a toxin. Now maybe her body can keep reacting with a hypersensitivity to gliadin indefinitely.... or maybe her body has reached a tipping point, where her hypersensitivity to gliadin has stressed out her immune system, and a stressed out immune system is going to make her sick in one way or another. When we got our second high test result, we put our daughter on a gluten free diet immediately. The second doctor agreed this was the right step. We are currently checking if she will have a positive response to the gluten free diet. We hope she will. In all my reading, two things I found the most helpful were the many kind and informative posts and posters on this site, and reading the research of Doctor Alessio Fasano (a leading U.S. researcher on causes in the U.S). who speaks more about the types of other symptoms/reasons/and possible autoimmune effects than others - this seemed closer to what we were seeing in our family. I'll include a link here to an interview series he did on a blog because I found it really readable -- but if you prefer to read his actual published medical papers they are also easy to find online. The link is to old interviews, but you can follow through to more recent interviews at the site if you find it helpful. http://www.tenderfoodie.com/blog/2011/12/19/interview-w-dr-alessio-fasano-part-1-should-anyone-eat-glute.html Two last thoughts -- from what I can tell, false positives on that test are extremely rare - estimated between 1-3% - and that would possible describe only an equivocal or borderline positive (say a 21 when 0-19 is the normal reference range) - not a strong positive result. Your daughters body is reacting to gliadin in an atypical way, and that is suspicious. And -- maybe ask your diabetic husband to do a full celiac panel. My diabetic father-in-law caught his celiac disease late -- he claimed he had no symptoms (silent presentation) which can happen -- or maybe he chalked some symptoms up to management of his diabetes -- which he knew about. Either way, it is so much better for his health that he is on the gluten-free diet now. My husband's diabetic + celiac first cousin also found the diabetes first and the celiac later, but her doctors feel certain that the celiacs preexisted the diabetes. In the med lit its pretty clear that some presentations of diabetes and celiacs really like to hang out together. I hope you find some answers and see your daughter's health improving soon.
  18. Hey there - just offering some anecdotal evidence - I'm married to a celiac. He had a vasectomy three years ago after we knew we were done having children. He said he feels great. Everybody is different, but fwiw, he has a physical every year and nothing else has cropped up in the meantime.From my perspective, I'm so glad he did. Things have been great and it is nice to not worry about other forms of birth control.
  19. Yep. There are lots of biopsy confirmed celiacs without DQ2 & DQ8, despite what the websites say. As far as I know 03:01 is DQ7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4580462/ It is linked to celiac in the med research for a long time, mostly investigated with DQ2&8 but has more recently come under scrutiny as an independent risk for celiac disease. The study linked above showed more than 4% of confirmed celiacs do not have DQ2 or 8. Study also showed that 38% of those without in their study of more than 5,000 carried DQ7. If you have those genes and a positive biopsy (intestinal? skin?) you could absolutely be a celiac. (What kind of biopsy?)
  20. Updates Daughter 1 repeat tests: super high DGP-IgG (again). Validating that the first time was definitely not a false positive. Her TTG-IgA still showed nothing, EMA IgA showed nothing. Rast allergy blood test (11 proteins, IgE) showed nothing. Thyrotropin test came back high - hypothyroidism. No measurable thyroid antibodies (yet? not yet hashimoto's ?) Results released electronically - no call from doc. As soon as we saw them husband and I decided she was going gluten free. Sent message on online system asking doc to call me to discuss positive test results. Nurse called two days later to say doctor is on vacation but told me that given test results we should put daughter on a gluten-free diet. Okay - did that - but now under 'official' medical advice. Still waiting for call from doc. So this is 'response to diet' phase and I am still symptom logging - would love to say she is better but not yet. Two days after going gluten-free she developed new rash patches under the very back of her arms where they meet her back – behind her armpits. Husband was out of town. His mom happened to come over. I asked her if husband had that DH rash on his butt and under arms (these are supposedly not typical places). She confirmed he got the rash in both places. Grandma asked to see daughter's rash – confirmed that this new location was exactly where some of husband's most troublesome and itchy childhood DH would occur. I actually got chills watching her look at my daughter, and remember going through the diagnostic process with her son. Grandma also confirmed that husband's patches would sometimes come and go very quickly – often less than 24 hours in the beginning – which is partly why it took more than 2 and a half years (and four skin biopsies) to finally get a conclusive diagnosis for him (they had no suspicions of what it could be back then -this was almost 30 years ago and they'd never heard of DH or Celiacs before the diagnosis .). When husband got home I asked if he wanted to consider a dermatology follow up / and seek a definitive skin biopsy of the rash for daughter #1. He said definitely not. He saw a ton of dermatologists as a kid and got a ton of b.s. diagnoses (including “poison ivy” in the middle of winter in Minnesota - with eleven inches of snow on the ground!) before the conclusive biopsy. He added that the skin biopsies were extremely painful for him as a child and that he doesn’t see the point in subjecting daughter to more pain, scarring, and invasive testing when he now feels the logical thing to do is confirm celiac / dermatitis herpetiformis through a gluten free diet. His feeling is that if she is on a gluten free diet for several months and symptoms appear to be worse, then we might pursue dermatology for rashes as needed. He is confident this will not be neccessary. Curious when I speak to doc what she will tell me. Pretty sure this center's line will still be that she is NOT A CELIAC. This despite clear symptoms, rash patches now following the exact same clinical appearance as her fathers biopsy-confirmed DH, strong family history, family history that indicated that the IgA testing might not work, compatible genetics, two high positive results on a highly specific blood test for celiac disease, and the elimination of wheat allergy (RAST) and lactose intolerance (eliminated for three days on docs advice) as possibilities. This despite best current research indicating that intestinal biopsy should no longer be considered gold standard for pediatric diagnosis - that the failure rates for biopsy are likely over 4% (compared to serology false results on the highly specific test she did twice - 1-3% failure rate): http://www.gastrojournal.org/article/S0016-5085(17)35532-4/pdf I don't know for sure what this doc will say. But between the two docs at this 'celiac center' they have now willingly told us: functional stomach pain (even though she was waking up and going to sleep with pain), false positive blood test (nope - second one reconfirmed), genetic incompatibility with the disease (NOT TRUE!), vitiligo, possible psoriasis, lactose intolerance (nope), and subclinical hypothroidism to explain my daughter....... I find it kind of hilarious that a gastroenterologist is willing to freely speculate that my kid has multiple other related skin autoimmune disorders that somehow both cropped up in the last year but probably won't be able to admit that the most likely explanation is one underlying cause of all these symptoms and it is....drumroll please....( too many episodes of HOUSE? Occam's Razor!) all this stuff is my kid's non-classical early stage celiac disease. Response to diet will absolutely confirm this for my family. She will then have met the four of five criteria for pediatric diagnosis, (symptoms, positive serology, genetic compatibility, response to diet) assuming it is updated to account for confirmed recent research findings to include HLA-DQ7 as risk / not just DQ2 and 8. The more I read over the last month the more I realize that the science just absolutely isn't where it needs to be for correct and early diagnosis of this disease. I think this is probably especially true if you have innate autoimmunity rather than the acquired autoimmune response. Perhaps with people with the acquired autoimmune variant of celiac disease, there really is a triggering event, and maybe then the testing works well, but from what I am seeing with my daughter, the current cascades absolutely don't play nice with atypical cases, innate autoimmune problems with gliadin, and/or early stages of this disease. If she does have a positive response to the diet, and we sure as hell hope she will, I will feel very happy we caught it relatively early. This does leave us in a bit of a bind with the other two daughters. They already had a 1-in-14 chance. Now with sis, 1 in 10. Knowing I have at least one bad gene and husband w 2.....They had their first serology screen - they are negative so far but both had total IgA levels at the very bottom of the very large ranges for their ages. I don't know if this is suspicious or not. Husband and I are discussing whether or not we should consider a gluten-free diet for them both as a preventative measure to forestall any other autoimmune /systemic damage for the next five critical development years of childhood, and see if the advances in testing/diagnostics can catch up in those years.... In the meantime, gluten is almost totally out of the house. We are waiting for our new toaster....
  21. So because I have been obsessively thinking and reading about all things celiac lately, I mentioned this curious observation (and the forehead one which we both are entertained by!) to my celiac husband, and it happened to be while we were taking a snack break watching last week's Game of Thrones. (Any other fans out there?) We decided Little Finger (on the show) is probably such an a$# because he is an undiagnosed celiac, badly 'glutened,' with severe neurological/psychiatric complications.....
  22. Sorry. Couldn't get this quote to go in correctly. See post above.
  23. I wasn't trying to suggest not to take it seriously, or that it isn't celiac, or anything like that. Just that there might be manifestations of a problem with wheat that won't show up in her daughter's upper intestine. To be clear, even if they don't, I absolutely believe her daughter may have a serious and complicating problem with wheat or gliadin, that should still be followed up on by mom & her daughter's docs. And if it might show up somewhere else (with allergy, inflammation testing, or other IgG testing or celiac testing) I'd just want her to consider trying all avenues so that she isn't blown off by doctors telling her it can't possibly be celiac. I admit I am just learning, and I certainly don't know enough about the other bowel tests run to speculate of what sort of screening this was (but that one result of "20" in a five year old, when "20.1" is equivocal I would also be curious about as a mom!) Finally I posted in kind of a hurry. If I wasn't clear, or if it sounded like discouragement to pursue more info, I totally apologize. Gemini, thinking about what you said about the AGA tests -- -"The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable. They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing. " I have been wondering about why they are being moved away from too. I know that the specificity and sensitivity of these tests is medically considered not as high -- but from what I understand I think that is because they were showing high in more people where subsequent endoscopic biopsy didn't show measurable 'celiac' damage.... Which to me actually begs a whole series of other questions. It is well established in the medical community that reactivity to wheat in some immune-mediated way (IgE - allergy, IgG - Allergy, NCGS, & Celiac, IgA - celiac) is actually really common - up to 10% of total human population by conservative estimates. I've been reading more of Dr. Alessio Fasanos papers on zonulin / interactivity with gut wall being affected by gliadin (one of the protein pieces of wheat that acts as a mimic -- also to thyroid hormone (and potential others!)) and potential links/ causation to literally dozens of other autoimmune conditions and also his 2014 interview on why the endoscopy isn't considered the gold standard of celiac diagnosis or even silver or copper anymore because it would be so much better to catch this condition before significant and measurable damage to the upper intestine happens. And honestly, I don't (yet) fully understand the eight million things I have been reading in the last three weeks. But I am reading them because my kid popped high on one of these serology markers, is symptomatic of the disease, has strong family history -- but when the endoscopy showed no damage (yet) we were told it can't possibly be celiac. And if I hadn't decided to post to this board, and seek more info, I might have moved on. And I'm really glad I didn't. And I am really grateful to the support I've found on this board. In the meantime, we are currently waiting for the second more extensive rounds of blood testing for daughter one, and first rounds on daughters 2 and 3. Daughter 3, who is only 3, has now had four consecutive bowel movements covered in white, or with really weird looking white stringy patches that are making me very concerned she might be having possible gallbladder or liver complications from unfound celiac -- while I am sitting around feeding her more gluten so I don't invalidate a future possible endoscopy! This way of finding this disease SUCKS. It totally sucks, and it is completely stressful, and I am definitely certain that we are getting all wheat and gluten the hell out of our house and soon. At this point, I honestly believe that daughter #1 has what-will-become-celiac disease -- but may wind up without a diagnosis (an annoying potential problem with school interactions and trying to get them to take it seriously) and I believe that it underscores a problem with the whole way this disease is currently defined and diagnosed. Many old school researchers and thinkers are saying you must have villous atrophy to be a celiac and some of the new research directions seem to be suggesting that there are sharp differences between the medical communities understanding of the adaptive immune processes at play versus people with innate immunity to gliadin. I am not a medical doctor, just another mom trying to figure-out-what-the hell is hurting my child's / (possibly childrens) health...but here is what I think: Hell yeah, original mom who posted - follow up like crazy on that AGA IgG result. Read a million medical studies and posts here. Follow up more. And if the doctors tell you it is nothing to worry about, or if they can't explain it or diagnose why, and you still have mom suspicion, ask another doctor. And if you still think the answers aren't great, ask again. And then, consider getting wheat and barley and rye out of your daughter's diet regardless of what the doctors say and see if her constipation clears up, and if she feels way better. (In pediatric cases shouldn't this be the FIRST advice to parents? Response to the diet??? I am frustrated by docs who have been telling me for weeks to potentially poison my kids more so their results are more definitive and less equivocal! And given my children's family history with this disease (dad, aunt, grandfather and more all diagnosed), as a parent I feel that it is a horrible ethical conflict to ask a parent to keep feeding their kids something that has a pretty high chance of being a culprit in making them sick -- it does not feel like 'do no harm' to keep giving my kids more gluten! It feels like I might be poisoning my kids and causing them other problems! All in the name of a positive endoscopy result??) At this point my theory of this disease is that it might attack dozens of other organs or systems in your body before it ever gets around to attacking your upper intestine. So if the AGA and DGP tests are finding this, but there is no findable gut damage, should that be called 'early celiac'? 'Wheat Intolerance Syndrome'? Something else? Hell, if pushed to make a super unqualified bet, I honestly suspect that all the variants of NCGS, gluten intolerange, IBS, the delayed / tcell mediated wheat allergy (not the histamine one), dermatitis herpetiformis, hell possibly even all 'eczema', not to mention a lot of other neurological problems, and mental health problems may all be caused by the same initial problem with gliadin. Maybe in people with 2 HL DQ2 alleles it attacks the intestines pretty early, in DQ8s maybe skin is hit early in, maybe in those with DQ7s it is hitting lower intestine or bowel, respiratory, skin, or brain&mood systems first...I don't know. But at this point I honestly think a large number of these people will likely wind up with villious atrophy at some future unknowable tipping point specific to their body / their genes / their environment / their exposures etc. if they live long enough. I don't believe "celiac can show up at any point" and "if you are in the risk group keep being tested every three years." Or that it shows up without explanation in a seventy-year-old who had eaten wheat their whole life. I believe it is showing up -- in literally hundreds of other symptoms and dozens of other diseases that it has triggered. But we aren't supposed to call it celiac or recognize the problem until it gets to the upper intestine. I suspect that for some people it goes there early. And for others it doesn't, but they are having just as many (just different) complications from the disease. Crap. I know this is a rant-y, and I offer my honest sincere apologies to all. I am currently really really worried about all three of my kids, and what I am contributing to in them by keeping gluten in their diets.... Other worried mom, totally sincere best wishes to you and your little girl.
  24. Hi, So sorry your daughter isn't feeling well, and that the testing process has raised more questions. (We are going through something similar and I know how tough if is to watch a sick kid!). Also not a doctor, but wanted to clarify some things about your testing. From what I think I see , I think your daughter had a high AGA-IgG level, not a raised DGP-IgG level. I think this test is not as closely linked to celiac diagnosis - but to any of the five other common problems people have consuming wheat. I think I read that the IgG Antibody in this test is sometimes covering an IgE antibody (antibody against an antibody...who knew?) that is reacting in a wheat allergy. here is a link that might be helpful in differentiating: http://www.tenderfoodie.com/what-is-a-food-allergy-defini/ that said I don't know what test "tTG/DGP Screen" refers to. Depending on what your doc says, if you have a high result you definitely want to follow up, either with a more comprehensive celiac panel - there are six possible tests) or perhaps with other investigations into possible wheat allergy. You might also want to ask your doctor to pursue tests that show evidence of inflammation to see if she is having other areas affected / other autoimmune complications. Best wishes, - hope your daughter is feeling better - and you both have good answers soon!
  25. Hey - autoimmune thyroid and celiac disease are besties as far as I can tell. Hashimoto's Thyroiditis (hypothyroid) was one of the first 'findable' problems for my sis-in-law (she had plenty of inconsistent GI symptoms, and unexplained infertility, but she was in the tiny percent of sero-negative celiacs, where multiple blood tests over multiple years didn't find it. When they finally did the endoscopy she had Marsh 3 lesions everywhere they could see even without biopsy (they did the biopsies anyway). I was also reading a lot of the diagnostic guidelines lately, and the European guidelines are very clear that a high degree of clinical suspicion is appropriate. In other words, do all the screening you can, if possible, because if that is what it is and you catch it 'early' you are so much better off than catching it late, after lots of other potential complications cropped up.... Good luck at the doc -- oh -- and if possible ask for paper copies of all the med labs that are run for you and your kids. It is a really good idea to have them all to refer back to if more questions crop up or if you want to double check the labs for any reason (learned this the hard way!)
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