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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About justlovlie

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  1. Hrm, that's interesting, I wasn't aware of that. I need to find her old labs...
  2. That is our issue...our old GI was not yet willing to say celiac for sure, yet she also didn't want to do the challenge. Her labs didn't indicate celiac since she was already gluten-free, but they were mildly poditive for wheat intolerance. We were in an awkward spot in that the GI said her symptoms were far more severe than she would expect for a "low level intolerance" and looked like celiac - but she wasn't willing to give her a lifelong diagnosis without the hard evidence. I certainly see her point in that a wheat intolerance often is 'outgrown'. Hopefully a fresh set of eyes from a new GI now that we have moved will clear up this muddy mess! In the meantime, I've just been curious as to what the day to day differences are in public schools if she did have a confirmed diagnosis. Our preschool has been excellent about working with us, but that's in large part because they suffered with us through the massive, uncontrollable, and super foul diarrhea and behavioral issues when we were first figuring it out! We had no formal plan in place, but we all learned together how sensitive she is and how to mitigate that. Maybe we have been spoiled by their good care of her! It's because of this that I am assuming we can get by well enough without the official stuff - but obviously a large public school situation is going to be very different. I'm looking forward to seeing what the school nurse suggests.
  3. Hi all, My daughter will be starting kindergarten in the fall, and I'm wondering if we should attempt to get a firm diagnosis before then. I have heard that schools are less willing to make accommodations without it, but I don't really know what that means in practical terms. Right now her diagnosis is 'presumed celiac' due to the fact that we were gluten-free prior to testing. Eliminating gluten made a very clear difference in her health, and her former GI did not want to do a gluten challenge at the time (when she was 3) for fear that it could really hurt her uneccessarily. Now she's a bit older, and we have moved and are on the hunt for a new GI. I have emailed the school nurse for guidance on the issue but haven't heard back yet. I will consider doing the challenge over the summer if there is value in it. In the meantime, she continues to react even to very small exposures such as cross contamination...the thought of loading her up on gluten has me shaking in my boots! What are your experiences with schools and having a firm dx vs just asking them to help her avoid gluten? We will be providing all of her food, and she is *usually* very good at self-policing what she eats. So I'm curous what the practical differences are. Thanks!
  4. Can anyone recommend a great doc in the Madison, WI area? We've just moved to the area...looking for both pediatric and adult celiac docs. Thanks!
  5. Celiac And Overdue Babies?

    The risks for a healthy postdates baby in a healthy postdates mom with a healthy placenta are about on par with any other catastrophic problem at term (ie cord prolapse, placental abruption, etc) other words, real, but low, and induction before mom and baby are ready to birth introduces other risks that, sadly, are rarely given their proper due these days before it's done. My kids have all been born vigorous and healthy, within normal size ranges. Thus far it is just our norm, our baseline. On balance, I'm happy to have strong babies that have cooked a bit longer than risk taking them before they're ready. But...none of that was really the issue in my post. ;-) I'm just curious to know if anyone else has seen a shift in natural onset of labor after removing gluten.
  6. Hi all, I'm curious to know if any of you suspect a connection between celiac disease and prolonged pregnancy, or if there is any data on the subject. I'm currently expecting our 4th in another month or so. My 3 other children were all born (healthy) at 43+ weeks. In the time since #3's birth, I've been diagnosed with Hashimoto's thyroiditis, and my 2nd child has been dx'd 'presumed celiac' (based on symptoms; labs were inconclusive since she'd already been gluten-free). I've been largely gluten-free myself since changing her diet, and have become increasingly suspicious that I may be celiac as well. My own vagueish health issues have cleared up tremendously and definitely come back when I do (rarely) eat gluten foods...I'm just waiting to finish this pregnancy before pursuing testing. It's a tough issue to untangle since most moms will opt for induction before waiting as long as I do...and really one isn't truly 'post dates' until 42 weeks. But I'm curious if anyone else has had a similar experience, and then had a more timely birth after going gluten-free and healing? Really hoping this one doesn't drag on as long as the others! There is a known connection with the hypothyroidism, so perhaps that will make a difference as well....*fingers crossed*! Thanks!
  7. Hi everyone,   My 4 year old daughter is in diagnostic limbo-land, still mildly symptomatic, and I could use some help in figuring out what I should do next.   The (long) back story: About a hear and a half ago, the whole family had a very bad gastroenteritis bug.  The rest of us got better, but my then-3yo really did not.  She was having middle of the night vomiting episodes, explosive and uncontrollable bowel movements - sometimes diarrhea, sometimes not.  She was potty training at the time, and the way things were happening it was hard at first to figure out if they were just accidents, if the vomiting was related, or what.  I knew that she fully understood and was capable of using the potty, and had long wondered if she might have a problem with grains (when she was a young toddler, she would often have gritty/grainy BM's, really painful diaper changes, after eating something heavy on grains), so we saw our family doc.  She advised that we go gluten free for 6 months and see if that cleared it up.  We did, and her symptoms starting improving very quickly.  At that point I learned that we should have had testing before changing her diet (oh how I wish I'd known that sooner...!).   So I started giving her small amounts of gluten foods again and made an appt with a pedi GI.  Her symptoms returned, albeit much much more mild than before.  She was back on gluten, though very little, for about 2 weeks prior to testing.  Her labs were negative for celiac indicators but mildly positive for wheat intolerance, and very mildly positive for soy intolerance.  Her vit D and iron were excellent and we don't supplement, but her growth had definitely taken a hit.  The GI doc said her symptoms were more typical of celiac disease, that she would not expect such a strong reaction from a weakly positive wheat intolerance.  But we went with that tentative diagnosis for the time being.     We cut wheat and soy from her diet, and occasionally cut dairy temporarily if she'd had some exposure.  We weren't specifically gluten free, but very gluten-light by virtue of avoiding wheat.  Months passed, and I would discuss how even the slightest wheat exposure would make her symptomatic.  (For instance, she started to eat another kid's Wheat Thins at preschool, but the teacher caught it and had her spit it out.  She didn't even swallow any whole chunks yet still got sick that night.)  Her behavior would change, she would have tummy aches and diarrhea.  I notice that the only time she ever has pee accidents is after some exposure.  Sometimes I have noticed that her eyes dilate when she's in that spacey behavior fog after an exposure.   GI decides to amend her diagnosis to 'presumed celiac'.  I remove more non-wheat but possibly gluten-containing foods (ie uncertified oats, etc) from her diet.  Gene testing reveals that she has one DQ8 allele.  Still no confirmed diagnosis, but obviously we can't rule it out now either.  I asked the GI if I should just put her back on gluten again and retest...the doc does not want to do that, fearing it could cause her real damage.  I would absolutely cringe at the idea of intentionally feeding her something that I know will hurt her, but on the other hand, part of me thinks it would be better to bite the bullet and do it now before she is in kindergarten, and know for sure.   That's where we left it a couple of months ago.  Our next follow up with the GI isn't until October.     So that's her story.  I apologize for the length of the post, but I feel like I need to lay it out to some fresh and experienced ears!   Where we are now is that we are learning more every day about hidden gluten, and continuing to alter her diet accordingly.  I have not yet taken the steps of replacing toasters and cutting boards and and and...and I'm on the fence as to whether or not I should go whole hog yet on the chance that the doc will want to do a gluten challenge and redo the labs or go ahead with an endoscopy.  She complains almost daily of tummy aches despite her diet, which leads me to wonder if she is feeling the effects of cross contamination...if I should go ahead and replace my kitchen tools, be more diligent about brands of foods that may be contaminated, and so on.  The tummy ache complaints have increased recently, so I am also wondering if I should hold out for that October appointment or make an earlier one.  She is such a tough cookie, she just tells me matter of factly that her belly hurts.  There is no gratuitous whining over it, no plays for extra mommy sympathy.  It just is there, bothering her, more often that not lately.   Any insight would be great.  I wish I had a magic bullet to make it go away.
  8. Hi guys,   I apologize for the delayed reply, life got busy!  Your answers to my question were just what I was looking for, thank you!   My daughter's GI doc called today with her gene testing and other lab results.  I probably won't get a hard copy with the whole scoop until her next appointment in October, but we did discuss quite a lot on the phone.  She has one copy of the DQ8 and "another lesser genetic indicator".  She didn't elaborate on the latter; I assume a partial copy or some such thing?  I will find out when we follow up in person.  In any case, we're still somewhat in the land of inconclusivity...obviously a positive genetic test (and not an incredibly strong one at that) is not proof of anything, just another clue.  I'd love opinions on my daughter's issues, and will make a new post.  Continuing to watch and wait and see at this point - but knowing that she does have the potential means that I potentially have the potential.  Ha!  So, knowing that I do feel better without, I will continue to be gluten free and discuss it with my doc at some point after the pregnancy.   Thanks again!
  9. Hi all,   Is an official diagnosis truly necessary for adults?  Aside from knowing with certainty, are there situations or reasons it would need to be official?   Here's why I'm asking.  My 4yo daughter is currently dx "presumed celiac", and we are waiting genetic testing results to offer us another good clue one way or other.  (Our family doc told us to go gluten-free for a few months to see if her digestive and other issues resolved, and unfortunately I followed her advice before learning that we should have had testing first.  Pedi GI says everything is screaming celiac except for the actual labs, so here we are.)   The rest of the household is mostly gluten free now as well since we've changed our cooking and habits for my 4yo.  This has led me to me realizing that I absolutely feel it when I do have gluten foods, now that I have so little.  I'm also realizing that the odd little issues and skin rashes I've had over the years but never inquired about could be related...and the not so little and hugely confounding health issues that have come up in the last 2 years could be related...and the Hashimoto's I was recently dx'd with could be related...etc, etc, etc.  There are many clues now apparent, and I wasn't even looking for them.   I guess I have two choices...start eating "normal" amts of gluten again and get myself tested in a few months.  Or just decide to call myself 'presumed celiac' and go off gluten, and not bother with testing.  The part that makes this much less black and white is that I'm currently pregnant.  I really can't in good conscience continue eating gluten while pregnant knowing how much better I feel without it - and feel as though I shouldn't eat it given that there's a chance that I have celiac, that it could very well be doing me real harm.  Obviously my daughter's genetics results will be very revealing, but I am left wondering if there is any practical reason why I should be diagnosed?  Should I even bother?   Thank you for reading, I appreciate any replies!
  10. Hi all...just thought I should update here. We saw a great pedi GI specialist who said it really sounded like celiac by our description. She ordered quite a lot of blood and stool labs looking for that and everything else under the sun just in case. They're finally all indicators for celiac, which was a surprise to the doc. She does have a moderate wheat allergy, though, and thankfully no other food allergies that were tested for. (I think she looked at lactose, casein, and soy, not sure about eggs). I haven't seen the values on all the labs yet for myself and I do trust this doc's judgement, but I am left wondering if the labs were truly accurate. My daughter was totally off gluten for almost two weeks, then back on 'gluten-light' for a week prior to testing. I guess at this point it doesn't matter much as the diet is similar....but there is some lingering doubt. Her symptoms don't seem typically 'allergic' to me, but I know that's not abnormal in itself. We have a follow up with the GI in a couple of months and I will have many questions for her then. Thanks again for all of the info...much appreciated!
  11. Thanks so much for the great info. My plan at this point is to call some pedi GI docs for an appt, or ask our family doc for the blood tests if I can't get her into the gi soon.
  12. Hello, I'm new here. My 3yo daughter has had some minor digestive issues for quite some time that have recently exacerbated. Our family doc suggested cutting gluten and dairy for a month, then reintroducing to test it out. I've long suspected that grains may be an issue, so we were all for it. We've been very consistent with the gluten and have done fairly well cutting dairy for a little over a week. I've already seen improvement in the consistency of her stool and other symptoms, though her tummy ache complaints haven't totally gone away. Yesterday she happened to find some Eggo waffles buried deep in the freezer. I didn't even know they were there! She ate two, frozen, while I was in another room. Not surprisingly she vomited 4 times in the middle of the night last night amd has had diarrhea 4 times already today, by lunch time. (Ahh, ok, make that 5, as I was writing this..) Now I'm reading that perhaps we should have some testing done before we change her diet. Our family doc is somewhat 'old school' and will likely just say, ok you know what it is, just avoid it. But it seems like it may be prudent to know if it's a sensitivity or true celiac disease. The only problem with keeping her on gluten is that her diarrhea issues have become a real problem at her preschool, so I'm keeping her out until it's cleared up. It's doable, but not ideal, and of course seeing her puking and pooing so much lately is not fun. The thought of intentionally keeping her on her old diet in the meantime knowing it could be really damaging is not fun. I'm on the early end of the learning curve with this and would love any feedback. Thanks!