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This Celiac.com 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 Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
moonunit added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseMy DilemmaOkay, I'm pretty sure I know what you guys are going to say, but I will ask anyway. I have a dilemma.
I have tested positive through Enterolab, and my son has always been a bit fussy by nature (he's 15 months old) so I had him tested as well.
His test came back positive, but look at the numbers:
Fecal Antigliadin IGA 15 (normal <10)
Fecal Antitissue Transglutaminase 10 (normal <10)
Quantitative microscopic fecal fat 54 (normal <300)
So it looks like he's absorbing food okay, and although I know, I know, it's "like a pregnancy test, positive is positive," a 10? That's kind of like... I don't know, is that cutoff number solid as a rock, I wonder now, or a teeny bit arbitrary?
I guess now I'm trying to figure out is which is worse:
- Make his quality of live extremely difficult (one of his first words was "cracker" and he adores cheerios) when he seems to be doing okay absorption-wise and I haven't had him see a doctor yet to confirm or direct his care
- Keep feeding him gluten when I can see that at least one number indicates that it might hurt him in the long run to do so
Right now I think we're in a wait-and-see place, figuring that if he is getting damage, it's minimal or will be later down the road. I would like him to be diagnosed by a doctor but the blood work only happens after age 2, right?
I guess I am mostly just looking for some opinions and some support that this is a tough spot to be in!
Oh, and P.S. -- Now I also wonder if I should have my daughter (age 2) tested. I would have to go through Enterolab because her pediatrician refuses to test her (MY doctors say that the + tests don't count, so since I "don't have anything wrong" my daughter has no family history to warrant testing.) This is getting expensive!
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moonunit added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)I'm Back -- Osteopenia Is Reason Enough!Hi everyone! I went away for a while, because doctor after doctor all said NO, you do NOT have celiac disease, you do NOT have a gluten intolerance, stop asking because we are not going to answer that question again. (I'm paraphrasing... the actual quote was "we're done pursuing that.")
I went gluten-free for three months (AGAINST a "celiac expert" doctor's advice, I might add). For the first two months, no real change, nothing I could point to and say AHA. Third month: a world of difference! I actually felt better! Symptoms that had gone on for YEARS were finally going away. Amazing!
But the scientist in me had to do a control. I went back on gluten. First two weeks, still healthy. Hmm, must not have been the gluten... but wait. BANG, sick again. Beh, enough was enough! I went back to the gluten-free diet.
I had asked my doctor for a bone density scan, just in case. She said no, I don't need one. So when the bone scan guy came to our local tree-hugger grocery store, I went and paid out of pocket to have him scan my finger. My bones are normal... for an 80-year-old! Osteopenia, he says. Go give this paper to your doctor and tell her to give you a proper scan.
I went back with paper in hand. She agreed to test me, to shut me up. Didn't want to even look at the scan I brought with me. Said those things aren't accurate at all. Okay, good, then my scan should be normal. Right?
Got the call just now, osteopenia in hip and spine! She's baffled. What could it be? It must be my Crohn's, which was diagnosed by one lab tech in `93 and nobody has ever found any evidence other than that paper of its existence. Doctors all say the diagnosis is absurd until they see that shining golden document, then I couldn't possibly have celiac or gluten intolerance, because there it is in black and white: Crohn's. No reason to question the hospital who not long after that diagnosis lost its accreditation. It has been written, therefore it is truth.
Whatever. I'm done. I've had three lab tests now, and all came back positive for gluten intolerance. I've had more than three doctors and they all say nope, not gluten intolerance, no way, the test isn't "positive enough"! But at least my current doc humors me and says condescendingly that "if gluten-free is working for you, keep doing it." That's more than the others said. They asked me to stop the experiment. Even the expert guy.
Point is, my "Crohn's" is going to be "in remission" forever, once I stay gluten-free. I just know it. I'm going to repair my bone loss, if that's even possible, and get rid of the symptoms that have plagued me, and be healthier than I've ever been. And everyone except me will be mystified as to how it could miraculously happen all by itself with no medical intervention.
Yeah, I don't need no Krispy Kremes, not now, not ever. I'm finished with gluten forever, and I just wanted to tell my silly little story so that if anyone else feels the same way, they will know that sometimes doctors don't know best. Maybe THEY're on drugs. There's no other SCIENTIFIC explanation for their behavior!
P.S. -- gluten-free pancake mix isn't half-bad...
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moonunit added a topic in Celiac Disease - Publications & PublicityGood Housekeeping -- August 2006There's a decent article about celiac disease in the latest issue of Good Houskeeping magazine (August). I had read the content on a web site before I think, must be a reprint, but it's good and mentions the many different symptoms etc.
I am hoping to write a letter to the editor thanking them for the article and/or mentioning that you don't need to be skinny to have it, yada yada the usual stuff, just something to get some publicity into a second issue.
Glad to see this in a mainstream magazine!
(But it sure is funny/ironic that the cover has Rachael Ray and a photo of a bowl of pasta on it...)
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moonunit added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Round And Round We GoJust posting in case this information helps someone... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's. Now I have nine opinions, and we're 3, 3, and 3.
BUT, something else has changed! As I started Week 9 of being gluten-free, something amazing happened. The D stopped! I have been walking, not running, to the restroom since last Saturday, and I've been doing so only 1-3 times per day instead of 5-7 times. All this time I've had ups and downs but never this many days in a row this healthy! It's so weird not to be chained to the restroom I feel like I'm walking out the door without my purse or something. Amazing.
But here's the kicker. I changed a couple other things at the same time as I got better. I stopped going to restaurants, thinking my cc risks were too high, AND I stopped drinking carbonated beverages. So maybe the gluten-free diet finally kicked in, or maybe with my resection I simply can't tolerate carbonation and have been unknowingly causing this all myself. Maybe I have an allergy to artificial sweeteners.
Then right in the middle of this experiment, the Enterolab results come back positive for gluten intolerance. Officially, we have three doctors who say Crohn's but not celiac, three doctors who say neither Crohn's nor celiac, and three test results (but zero humans) who say celiac/gluten intolerance but not Crohn's.
When I wasn't feeling any better on the diet, I was a huge skeptic. Now I'm a lay-scientist with a renewed interest in what might be fixing the problem. Whoa, maybe it CAN be fixed after all. One thing I do know: it's not a prescription drug curing me like all the docs said I'd need. I am not on ANY prescription meds. So something in my diet can fix the problems, at least temporarily. Is it going gluten-free? Is it carbonation? Artificial sweeteners in diet sodas? Was it my lipstick, the restaurant food, just coincidence?
Who knows. But if I can stay well, I'll do what it takes to keep this going. Whether the good times keep going remains to be seen. I just wanted to tell people who are on the diet for 6, 7 weeks that maybe keep trying, maybe in the end healthy will happen. I certainly never expected to wake up one morning and boom, have this many good days in a row, more than I've had in years.
P.S. -- Living off the amazing awesome goodies handed out at the celiac walk probably doesn't hurt, regardless of my gluten status! That stuff is fantastic and the walk was just wonderful! Attend one if you can!
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moonunit added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsEnterolabHey all, after my many doctor trials and tribulations, I've decided to do the celiac panel and genetic testing kit from Enterolab. The gluten-free diet isn't entirely working for me at six weeks into it (I'd call it inconclusive at this point), so I'm not sure the doctors are wrong that I don't have celiac disase. But I figured this extra test is worth a try... small relative expense if my entire quality of life is changed.
What I'm wondering is this: since Enterolab is an independent lab whose business model seems to be getting word-of-mouth recommendations from celiac patients to other potential celiacs, it would be in their best interest to never find anyone negative for celiac. I know it's a longshot to ask here because someone who tested negative would probably not hang around this board for very long, but does anyone here know of an Enterolab result for celiac and/or gluten intolerance that came out negative? For anyone? I just want to make sure they're not making a living on telling people what they think they'd want to hear...
(Not that this entire experience is making me a horrible grumpy suspicious cynic or anything...)
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