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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 NotMollyRingwald

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  • Gender Female
  • Interests family and fitness
  • Location Omaha, NE
  1. I'm An Idiot.......i Also Need To Speak Up!

    What she said! For example, I'm NCGS and will never get my gums back to normal (they receeded horribly) and my enamel is so far gone its a miracle if I don't have a cavity at every dental visit. I am just past 4 weeks gluten-free again (after gluten trial for EGD), before that I had been "strictly" gluten-free 8 weeks but still had lots of symptoms because I wasn't avoiding CC or paying enough attention to labels. I have totally done what you did. The regret quickly followed. Lol I think it's a bit harder to get past the "being rude" feelings when you aren't actually diagnosed (Celiac or otherwise) least for me it is, for some silly reason I feel like I have to justify my reaction to gluten with something concrete. Well duh Amy, as if getting wicked sick for a week after even a tiny bite of gluten containing food isn't concrete?? *face palm* I guess what I'm trying to say is, it's easier to say "I have a disease that requires me to be a nazi about avoiding gluten." vs. "Gluten makes me sick as a dog so I avoid it at all costs." Especially right now when gluten free has become a fad diet option. Anywhoo, don't beat yourself up too much (well, just enough to learn from this mistake
  2. Glutened myself today. Ugh! Stupid stupid stupid.

  3. 4 Weeks Gluten Free

    I agree with the above about staying away from the gluten-free beer for awhile.  After 4 weeks back on gluten-free diet, I tried Redbridge last weekend and bleeeech!  I miss my vanilla porter.    Wine it is until I can forget! LOL 
  4. Battling No Food

    Amen to that!
  5. This has been my experience also. I always require more Novocain at the dentist, and needed extra anesthesia when I had my tonsils out, etc. I didn't realize this was a red head thing!
  6. I was gluten-free 6 weeks before the blood work, and 8 weeks total before the challenge started. I suppose it's possible that my 4 weeks back on gluten weren't long enough to redo the damage undone by 8 weeks of healing, especially since I was "gluten light" prior to going gluten free for about a many "ifs" and "buts" and "maybes" in my situation. One thing is for sure, that challenge was 4 weeks of hell, and, at this moment, I have no doubt that Celiac or NCGI is to blame. Luckily, I don't *need* a diagnosis for school/work/etc at this point. And I did decide to talk to my son's pediatrician at his next well check. Hopefully she is willing to run the Celiac panel if only for my piece of mind.
  7. Dear Future Amy

    [color=rgb(40,40,40)][font=helvetica] Dear Future Amy, I know you are doubting your intolerance/sensitivity to gluten. I'm sure, now that time has gone on, you're starting to doubt the trouble it has caused you. You have forgotten how very miserable your gluten challenge was, and have started allowing the if's and the but's and the maybe's into your mind. So, I'm writing to you now, to remind this and think back. Remember. Accept. And for the love of God, put down the Vanilla Porter, or the flat bread, or the Oreo, it's[b] not [/b]worth it!!! Reminders: * Bloating - feeling 6 mo pregnant, all the time. Remember how miserable you felt in your suits and jeans! * Difficulty losing weight/changing body composition despite doing "all the right things" * Constipation - remember how excited you were to have a normal BM the first week after going gluten free?? Remember the thin BMs, the rabbit pellets, and then the days full of "D" after running or "eating something wrong." * Fog head - think of work, how hard it was to concentrate on writing disciplinary action letters, how long it took. Then think of home, how mentally tough it was to put together a simple grocery list (only to forget the important things, e.g. milk) * Unusual fatigue - suddenly unable to make it through workouts, like suddenly couldn't finish a set from failure/shaking/weakness but your muscles didn't feel taxed...remember how much you used to love lifting and running? * Dry skin/eyes - think of the horrible cracks on your hands, how much money was spent on magic lotions and potions that never worked, think about how red your eyes always were, how you could never wear contacts, how you rarely had tears, even when crying * Short tempered/irritable - how many times did you lose your temper with Maddox when he didn't deserve it? How many times did you act irrationally with Boyd? Think of the times at work when you felt unreasonably ticked you off and how pissy and later embarrassed you felt about it. * Periods of depression, constant mild anxiety. Think about how stuck you felt when you were so overwhelmed you didn't know what to do, so you did nothing...remember how anxious you always felt about your "to-do" list at work and at home, and how you felt out of control and like things were stacking up, over your head, with no end in sight. * Think about your gums, the recession and reduced enamel, the horrible tooth sensitivity * HELLO, fibromyalgia! * Headaches * "Irritable bowel syndrome" * Psoriasis of the scalp & the odd bumps on your neck and behind your ears * Think of your three angels in Heaven Now, remember the gluten challenge; five weeks of hell. Think about how, within a week, your brain was worthless. How you washed your hair with shaving cream, and wore flip flops to work by accident. How you gained 11 lbs in 3 weeks...even while barely eating. Remember how pensive you were to eat at all? Remember the last few weeks, when your head hurt so bad you couldn't think straight and no pain medicine worked. Remember the fire alarm!! How everyone at work was worried. How nauseous you felt after every meal... Think back to that night you slept from after work to bedtime, and then went right back to bed, and the Sunday when your stomach hurt and head hurt so bad you slept from right after church till dinner, and was back in bed after Maddox was asleep. Remember how bad your muscles & joints hurt! Think of how your jaw felt permanently clenched and your neck muscles were stressed. If all that doesn't bring you back to reality, remember the sweet voice of 3 year old Maddox, "Mommy, you not sick anymore?" He knew something was wrong and he was worried. Remember how sad and defeated you felt when you you couldn't muster the energy to play power rangers with him or push him on the swing for more than a couple minutes. Think about Boyd. About how strained your relationship became... And how often you thought about all this and prayed for the day when you could banish gluten forever. Stop questioning yourself. Whether Celiac, or NCGI, or only gluten sensitive, your body does not do well when gluten is in it. THE END. It's not worth the flavor or the texture. You will regret it. So put it down, whatever it is you are considering eating/drinking that you know will make you sick. It's not worth it! Sincerely, Past, sick as a dog & miserable, Amy [/font][/color]
  8. Will def keep this in mind! Admittedly, I wouldn't opt to try antibiotics w/o reasonable suspicion of SIBO (am allergic to several and they make me nervous), but if it needs doing, it needs doing!
  9. Ugh. This kinda makes me want to bang my head against a hard object. LOL If they cant rule out Celiac and the SIBO tests are only 60% accurate and no reliable testing exists for other intolerances (e.g. Lactose), the only real viable option to determine what the heck is wrong with me is __________? Elimination diet? Give gluten-free/DF a shot and reassess after 3 mo? Rubber room with a special white jacket??
  10.   All very good points and input, Irish, thanks.  I will ask him about the MARSH scale next time we talk!  LOL at the duck comment!  I don't think I asked him specifically (errrrrrr...memory fail) to explain his reasoning for forgoing the breath test, but I got the impression he doesn't think SIBO is my issue. I think if I called and told him I want to do it anyway, he'd order...think I should do that?
  11. Just got the word from my GI – the biopsy results are inconclusive.  I don’t have a copy of the report yet, but my doc explained there was a small amount of damage to my villi.  However, it was not full villus atrophy as would be expected from a full blown Celiac.   He believes the damage could be from “early Celiac disease” or it could be the result of a severe gastrointestinal virus (I had a nasty stomach bug last Christmas).   Given my significant positive improvement on a gluten-free diet, he leans towards the early Celiac theory, but doesn’t want to official diagnose that at this point as my blood work (tTg IgA) was negative (8 with 1-10 being normal).   He doesn’t want to exclude Celiac at this point either, as I was 6 weeks gluten-free at the time of the blood work and it’s possible my tTg would have been higher before going gluten-free.   ARRRRRRGH.   Anyone have a time machine that I could use to go back to February and see a doctor BEFORE going gluten-free??  *Sigh*   So, we also discussed options.  1) take the gene test and hope it is negative (so we could positively rule out Celiac),  2) treat as Celiac/NCGI and go along my merry way on the gluten-free diet (complete with a referral to the hospital dietician), 3) go back to eating gluten for EIGHT MORE WEEKS and run a full panel of bloodwork again in August.   So here’s the thing.  If I have Celiac, I want my son to be tested.  When it comes down to it, the diagnosis/ruling out of Celiac is only important to me for that reason.  I already know gluten is poison to my system…the gluten challenge proved that beyond a doubt.  I can’t go through another 2 weeks (much less *8* weeks) of gluten hell.  I just can’t do it.     So, I opted for #1 & #2.  Hopefully, the gene test is negative & Celiac is ruled out.  If it’s positive, well, I guess I cross that bridge when/if I come to it.  (Sidenote: if this is what “early” Celiac is like, I cannot imagine the misery so many of you endured when eating gluten!!!) So, long story even longer, I’m wondering about the possibility of the villi damage being done by a stomach virus/SIBO/lingering stomach virus.  The GI originally planned to take a sample to test for SIBO during the EGD, but wasn't able to (the only tube they had for the procedure is made of latex, I'm allergic).  He mentioned a breath test as an alternative, but doesn't feel like that is a strong option at this point.  Thoughts?  Any insight?   Once again, I am so appreciative of you all - the opinion of those who have been- there-done-that- and-should-have-a-medical-degree-from-the-experience is HIGHLY valued by this girl!!    
  12. Disappointing Endo Results

    I can understand your disappointment.  It's so backward, isn't it?  To be disappointed when a disease has been ruled out??  I've begun preparing myself for "normal" results, too...caz, as weird as the normals would think this sounds, I know having Celiac would justify all the pain and suffering, and maybe make me seem less crazy to them. To "only have IBS" just doesn't seem to mean enough.  The important thing to consider is Non-Celiac Gluten Sensitivity/Intolerance (I see the terms used interchangeably, not sure which one it really is).  If you have seen improvement on the gluten-free diet, that speaks volumes. More importantly, if you decide to go back to gluten, and your symptoms come raging back, are worse, or change significantly, you'll have an answer.  Celiac or NCGS, gluten really messes with many people.     Anyway, I hope your disappointment is short lived, and things improve for you. ((HUGS))   ET correct spelling...but there are probably still lots of mistakes. LOL 
  13. No more gluten for this girl. Yeeeeeeeeeeessssssss. *fist pump*

    1. IrishHeart

      whoohooo! fist pump bump!! :)

    2. Celiac Mindwarp

      Great news, next stage of your new gluten-free life :)