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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 mamafish

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  1.   None I know of that are really reliable (there is some stool testing for fat content that can be done, but we found that really hit or miss - someone else here might have a better idea about possible tests).  My 10yo's poop has started floating again, even on the fat digestion enzymes, which is one reason we've just gone gluten-free even with negative celiac tests. From what I can tell, especially in kids, it can take a long time to have enough damage to make the blood tests positive, but they can be malabsorbing and have behavior issues *long* before that.  I personally don't want to wait for enough damage for a diagnosis.  The "good" news is that you have lots of symptoms to track, so you should be able to figure out pretty quickly if gluten-free is making a positive difference.  Good luck - I know it's hard to think about all the food stuff when you have kids that are high needs and not sleeping!
  2. We've had all of those (I have one kiddo on the spectrum, one NT).  Definitely all possible food intolerance symptoms.  Gluten's the most likely culprit, so I'd try taking that out first and watching the symptoms - but know that if they don't get better, gluten might still be a problem, just not the only one (the other biggies for intolerance are dairy, corn, and soy, but my kid reacts to weird stuff like carrots - it can be almost anything).   For floating poop, we also found that enzymes to support particularly fat digestion were helpful (we use LypoGold - in all cases with enzymes, start them slowly).  Those were helpful for us in addition to identifying food intolerances.   I've seen SPD entirely vanish with removing intolerant foods, just to give you some idea of how major the behavioral changes can be (definitely not saying that *will* happen, but sensory issues are very food reaction and vitamin deficiency related for my son).
  3. It's been a while since we were last gluten-free, but I used gluten-free oats buzzed in the blender for meatballs and stuff where I just needed the absorbency.  For things like gluten-free homemade chicken nuggets, where crunch matters, I crushed up potato chips.
  4. Hip Pain At

    Have you had your thyroid antibodies checked?  Joint pain can be a symptom of Hashimoto's for some, and it often co-occurs with celiac.  (Also, for some people with thyroid issues, soy can aggravate things).
  5. Day 2 gluten-free.  Snack...  Little fresh mozzarella balls, rolled in olive oil and balsamic vinegar, add 1/2 a dehydrated cherry tomato (we have these ridiculously sweet orange ones), top with a bit of basil.  I think fancy people use a toothpick and stuff, but I'm just eating them. So freaking good.  It might end up dinner, too.  (Okay, probably not because my kiddos will not be so excited, but...)
  6.   I'm dealing with something similar.  Very low ferritin, although not quite anemic yet.  Also low vitD and a bone density scan showing osteopenia at 43.  I have some thyroid antibodies as well - not enough to be Hashi's yet, but definitely not zero, either.  And all celiac bloodwork was negative (but it runs in my family). At this point, I've opted to go gluten-free and to retest my iron in 3 months (without taking iron supps - I have enough iron in my diet that neither iron or calcium should be deficient).  I figure that if I'm not absorbing nutrients, and that improves while gluten-free, that's a good enough diagnosis for me.  I don't need to wait for enough damage to show up positive on the tests - something is clearly affecting my body already, so I'm taking action to try to figure out what.
  7. Clearing out crap is definitely a possibility.  I don't drink a ton of water usually, so maybe my body is trying to tell me something .   Nothing processed yet, and we eat plenty of salt regularly, so I don't think it's anything like that.  It was just a curiosity, and definitely hasn't abated yet!  We shall see.
  8. We just went gluten-free yesterday, and I've been watching my kiddos with interest.  But the first thing I'm noticing is in me.  I'm way thirstier than normal.  Is that just a strange anomaly, or have other people noticed this?     (I'm not diagnosed celiac, this is an experiment to see if it impacts all the other numbers that are apparently out of whack - ferritin, hypothyroid, thyroid antibodies, and osteopenia at 43).
  9.     It totally is .  One that makes me feel much better to eat, and seemed optional for my kiddo.  I think it really varies person to person.
  10.   Yup, we ran everything we could.  tTG was negative, but IgA was low normal for both me and my daughter.  Waiting on the IgG-DGP now.  Couldn't get EMA done, unfortunately.  We'll be trialing gluten-free no matter what the tests say, but I wanted to run them first where we could.
  11. I'm 43.  I'll race you to the weights .
  12. You're biopsy-confirmed celiac and she's got overwhelmingly positive antibodies?  I'd take that as pretty conclusive.   The good news is, if you can get this autoimmune disease quieted, maybe she *won't* get some of those nasty things she carries genes for (we have that problem in my family too).  Gluten-free isn't easy, but I'd way prefer it to a lot of other things my kids could get.   From what I'm reading, 60%+ of people being diagnosed with celiac now have no GI symptoms, and up to half of those don't report *any* symptoms (although apparently some of them feel better going gluten-free anyhow).   We're in that camp if we test positive (we're testing because of relatives with celiac).  And yet I did bloodwork and apparently I have screamingly low ferritin and the doc is shocked I'm not anemic and brain fogged and unable to function.  I "feel" fine (or as fine as the parent of a special needs kiddo feels.  I thought.  So things can be quite wrong before they feel bad.)
  13. Sadly he's in research.  I'd happily get on a plane to go see him otherwise ;-P.  But he was hugely helpful in walking me through how I might sort out celiac likelihood before I am sick enough to test positive.  Like he said, if other things in your body are going awry, get a baseline.  If going off gluten fixes them...  someday that will get people an official diagnosis, but I don't need that.  I just want to be doing the right things for me and my kids. His suggestion on the osteopenia/porosis (while making clear this isn't his specific area of expertise) was to go gluten-free for 3 months to start healing (including getting off any other foods that might be a problem - dairy/corn/soy/etc), and then to get aggressive on:  weight-bearing exercise, a diet rich in calcium (ideally dairy because it's easier to absorb, but only if you can tolerate it - I don't have problems with dairy as far as I know), and vitamin D supplements to get D levels into the top half of your lab's normal range.  And for me, to make sure I'm eating a diet that doesn't make my estrogen nuts (I know how to do this - I have endometriosis), and to make sure my thyroid is behaving.  He thinks that in someone with mild-moderate gut damage who is premenopausal, that should usually reverse the osteopenia.   
  14. My story with grain-free/paleo... I think it *really* depends on the person.  We have tried several different approaches all trying to figure out the best diet for my son.  I went through a lot of them with him because I nursed him for 3 years.  We've also tried some different things since then.    End result, he does very well grain free, so long as he gets lots of squash and sweet potatoes.  Adding in things like rice isn't a problem, but he could happily be largely carnivorous.   I feel like *hell* eating that much protein, meat protein in particular.  And if I eat too many nuts (and too many for me is more than about 1/8c a day), I get roaring estrogen dominance problems (already an issue, but nuts have a ton of plant estrogens, and 1/4 c of nuts a day for a month changed my very regular cycle from 30 days to 19.  19!!, and raving emotional/mood swings.  Went back to normal immediately when I went off the nuts, and recurred when I tried again because I'm a scientist and an idiot).  So for me, nut flours aren't a good replacement for grains.  Fats are good, but too much, and I think my fat digestion gets overloaded.  And if I use veggies to fill up all that food space, I still need to be careful about estrogen load.  Bottom line, for me it's a lot easier to have at least some grains, and I feel better eating them. I am all for people experimenting with diet, because I think the right one can have a really profound effect on quality of life.  But after my own experience, I really resist the idea that any diet is a fit for everyone.
  15. Yup, from what I've read and the opinions of docs presenting at celiac/endo conferences, the blood tests have a big false negative rate for people with silent/latent/potential/early celiac.  One doc explained it to me like this.  It's kind of like cancer - they used to detect it at stage III/IV, when patients were already really sick/affected.  Now they can detect many cancers really early, before patients realize anything is wrong.  He said that with celiac, we're still detecting it late, because there's no good agreement on what "early" celiac looks like - but a patient can still have bad things going on that early.  He says that in my case, he'd take *any* positive antibody test very seriously, or a collection of symptoms that would indicate growing malabsorption/autoimmune issues. So I have a bunch more tests happening now (this doc sadly can't treat me directly, he's in research, not clinical practice, but he gave me a list to take to my family doc to order).  A DXA scan (he says that often celiacs present with osteopenia/porosis, and if I, at 43, have that, then with my family history he'd be very suspicious.  Also testing thyroid/Hashi's and I already know D and ferritin are low (doing a full iron panel as well).  He said that he can't "diagnose" without a positive biopsy, but he can tell me unofficially that if I have a collection of metabolic/absorption/immune issues that often congregate with celiac, a gluten free trial is in order, and then testing those numbers again in 6-12 months.  He said if they improve, with my family history, he would retroactively assume sub-clinical/early celiac, no matter what the antibody tests said (and to either trial gluten-free with my kids and watch symptoms very carefully, or to test them very regularly).