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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

Cara in Boston

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About Cara in Boston

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  1. Neg Biopsy :(

    A negative biopsy does not mean you DON'T have Celiac.  It only means damage was not found.  This could happen for several reasons, the most common is they just happened to biopsy a spot that did not have damage.  It is often missed.  You also might not have enough damage to show up yet.  Some doctors wait until you do to give a diagnosis.  This is crazy.  If you were pre-diabetic, would the doctor tell you to just continue on until you develop diabetes?  No, you would change your diet and change your life.  Sounds like you've had a positive blood test and a positive response to the gluten free diet.  That should be enough to diagnose you. After my son was diagnosed (positive blood and biopsy) I was tested.  I had a positive blood test.  I had been in and out of my doctor's office for years with a variety of symptoms (insomnia, heart palpitations, dizzy spells, headaches, etc.) and had GI issues that I just thought were part of getting old.  Once I saw my blood test results, I went gluten-free too and all symptoms vanished.  It was like I was a new person.  My biopsy was negative, so my first doctor simply said I didn't have celiac disease.  When I asked about everything else (son diagnosed, symptoms, blood, etc.) he said they must just be a coincidence.  Started to go to the specialist treating my son and she said that was ridiculous.  Of course I have it too.  The biopsy can only confirm the diagnosis . . . it cannot rule it out.  That so many doctors still use it as the "gold standard" is very frustrating. If you need a diagnosis, I would find another doctor who is more up to date on current testing standards.  There is also something called "non Celiac Gluten Sensitivity" where you have all the symptoms, but test negatively.  My current doctor considers "response to gluten-free diet" as a huge indicator . . . more reliable than the biopsy for whether or not a person is sensitive to gluten.
  2. Please have her tested for Celiac now that she is currently back on Gluten.  At age 5 my son's behavior went from "normal" (he was a handful, no doubt, but nothing unusual) to super-sensitive-tantrums-at-any-time . . . he was irrational, no amount of redirection or even threats of punishment seemed to matter.  The tantrums were over things like not being able to get his socks on fast enough, or the lego pieces wouldn't fit together. It culminated in a HUGE public tantrum in McDonalds when he didn't get the toy he wanted in his happy meal.  We have other children, so we were "experienced" parents.  I couldn't figure out how we had one kid that just couldn't keep it together.  He did manage to keep it together at school, which further confused us.  After about a month of this, he was suddenly complaining of stomach aches daily.  By the time we got him to the doctor, the stomach aches were gone, but the behavior was still there.  We had basically stopped taking him anywhere because his behavior was so unpredictable.  The whole family sort of tiptoed around this kid so as not to set him off. At his doctor's appointment, I happened to mention how "challenging" he was (just in conversation . . . no idea that it was a symptom of anything) and she put the pieces together and tested him for Celiac.  The results was "very positive" and as soon as he was able to go gluten free, we saw a huge improvement in just days.  Turns out, this type of behavior is the #1 symptom of Celiac in children.  He had absolutely no other symptoms (other than the stomach ache for about 4 days in a row.)  Very regular bathroom habits, no growth issues, etc.  Just this crazy behavior change. Its been over 5 years now and I am so thankful we figured it out.  It is important to get the tests so you have a firm diagnosis.  When he was diagnosed, we had everyone in the family tested and I was positive too.  I thought all my issues (headaches, insomnia, brain fog, etc.) were due to just getting old.  All went away when I went gluten gluten free too.
  3. Desperate To Lose 10 Lbs

    Read up on the Paleo diet.  I lost weight while consuming slightly more calories.  Once I eliminated grains and added more fat, that seemed to do the trick.  Plus, I found that I felt GREAT.  Not starving all the time.  I made sure I had protein and fat at every meal (avocado, nuts, olive oil, etc.) and everything improved (medical numbers, skin, hair, energy, mood, etc.)
  4. Since it sounds like testing (for celiac) is complete, you can go ahead and start him on the diet.  If the test results come back inconclusive (biopsy can only confirm celiac, not rule it out) you can continue the diet for 3 months to see if it helps.  Not sure what his symptoms were, but if you see improvement on the diet, you will have another clue as to what might be causing the problem.  
  5. I do think it would be great to have an actual, concrete diagnosis.  However, there is a chance you could go through all the pain and suffering and the biopsy could STILL be negative and that will not rule out celiac.  It just means the damage was not found, NOT that she doesn't have it.  The doctor could miss it, the gluten challenge might not have been long enough, (my doctor said 6 months eating gluten), etc. etc.  If she is told she does NOT have celiac (when it kind of looks like she does) then she might feel free to continue to eat gluten - even occasionally - and her health will not improve.   Some doctors won't diagnose without a positive biopsy.  Others will take into account family history, symptoms, response to the gluten free diet, etc.   Some schools, colleges, camps, will require an actual diagnosis in order to provide accommodations.  Of course, a diagnosis of gluten intolerance would also work in this case.   What blood tests did she have?  Maybe she was not given the whole panel (not uncommon) . . . maybe if you revisit that you could get more information.   Anxiety and depression are also symptoms of celiac disease.     From my experience, my youngest son was diagnosed first.  Once I learned about celiac disease, I realized I had most of the classic symptoms for about 5 years.  I was extremely anxious, but I attributed it to being sick all the time and my doctor not finding anything wrong with me.  My blood tests were positive, so I went gluten free with my son.   Suddenly felt great.  Then doctor wants to do biopsy.  Says I hadn't been gluten-free long enough to change outcome so I did.  Biopsy was negative.  New doctor (at Celiac Clinic) says to go back on gluten for 6 months and do another.  I made it about 6 weeks and felt terrible again.  Stopped and just went gluten free.  I didn't need a positive biopsy to tell me I shouldn't be eating gluten.  My doctor diagnosed me with "gluten intolerance" even though I had positive blood tests and a son with celiac.  I clearly have celiac, but who cares?  Treatment is the same.
  6. Eating Out In Washington Dc - Need Suggestions

    Thanks for the suggestions so far.  We will be staying close to the museums and stuff - taking the train, so we won't have a car to travel too far.  
  7. Bringing the kids for a visit on spring break in April.  Last time we were there, no one was diagnosed.  This time 2 of the 4 of us are gluten free.  We plan on getting a hotel with a kitchenette so we can cook breakfast and pack a lunch, but we'd like to eat out a couple of times too.   However, the thought of being sick while traveling, or having symptoms on the train ride back horrifies me.  My 10 year old is very sensitive so we need places that don't just offer gluten-free options, but really know and understand cross-contamination, etc.   Options for breakfast, lunch, dinner, even a bakery for a treat would be great.   Thanks -   Cara
  8. Chef That Wants To Borrow Your Shoes...i'm Taking A Walk

    I think what you are doing is great, however, you will not get the full experience because you will have no reaction when the waiter, menu, kitchen staff, manager, etc. is wrong.  Our extended family is constantly rolling their eyes when we decline dinner invitations because they just don't get it.  If the place has a gluten free menu, why don't we just enjoy it?  The consequences of putting our health into someone else's hands - a stranger who may or may not know what they are doing - is just too great.  And, too stressful.  Sometimes I can't even enjoy my meal because I am so worried about what may happen tomorrow.     We have a limited number of places we trust (CPK is one, but only the location at the Pru, not the one downtown) and sometimes even that can be inconsistent.  The fantastic waiter one day may not be there the next time.   If I was just "choosing" to be gluten-free, there would be 100s of options for me.  The reality is very different that what it may appear.   Maybe you could get those test strips (never tried them) and test each meal to see how often mistakes really happen.
  9. Chef That Wants Your Feedback

    Our frustrations are pretty simple.   We have 4 in the family, 2 diagnosed with celiac disease (10 year old and me, the mom).  We live in Boston where we seem to have some choices for eating out.  However, for the kid, he can go to several places and get a cheeseburger (99, 5 Napkin Burger, etc.) but none of them can cook french fries safely.  Who wants a burger with no fries?  We LOVE it when there is a carnival or festival in town because the French Fry truck is usually there. They serve ONLY fries, so the oil has not been contaminated.   Which brings me to my biggest frustration.  I can cook most things at home.  However, I'm not too keen on deep frying.  Every now and then we'd love a real, fried donut . . . or crispy fried chicken.  I just can't duplicate those kinds of treats in my kitchen.   Ditto with wood-fired pizza crusts.  That is what I miss most.
  10. It is not uncommon for people's symptoms to change over time and for them to be more intense after being gluten free.  The longer you are gluten free, the more sensitive you become and the more intense your symptoms become.  My son had ZERO symptoms (except for a behavior change) when he was diagnosed three years ago.  Now he gets stomach pain and vomits right away . . generally feeling unwell for about a week and then joint pain and fatigue for about a month.  It's like he has a bad case of the flu and it takes his body weeks to recover.   I used to have all the classic symptoms.  Now I get a brief upset stomach followed by weeks of fatigue, insomnia, anxiety, brain fog, and joint pain.     It is weird how your immune system works.   I wouldn't cut anything else out of your diet.  I would focus on making sure you were actually 100% gluten free.  Take into account cross contamination, things like that.
  11. She has symptoms, so she should be checked.   First degree relatives of people diagnosed with Celiac Disease should be tested every three years - regardless of symptoms - and sooner if symptoms present.     My "regular" kid gets tested every couple of years, but every I admit, I tend to think "CELIAC!" every time he has a bad day . . . he is getting tired of it.
  12. My son was only positive on some of the blood tests, perfectly normal on the others, so if you were not given the complete panel of tests, it could be missed.  Also, some people (esp. kids) never have a positive blood test.  It is possible to have negative tests and still have celiac.  Another thing to consider is non celiac gluten sensitivity.  Same symptoms, just no positive blood tests . . .    A biopsy can also be negative and that doesn't necessarily rule it out.  The damage can be missed by the doctor.     After he's had all the tests (have the blood work re-done) you can still try the diet.  Think of it as the "final" test.  If his symptoms improve, you will know gluten is the problem.  Keep a journal of his symptoms since the change can sometimes be gradual.  You might not notice it at first.
  13. Wheat flour can stay airborne for hours and eventually settles on everything.  My son is so sensitive to cross-contamination, I don't bake with wheat flour in our home at all and we rarely eat out, even if a "gluten free" menu is available.  If there is flour in the kitchen, the risk is too high.  I would not have my child be in the classroom where cooking projects take place.  Not even when they were not cooking.  Bringing in our own equipment and providing gluten-free alternative wouldn't even be an option because the other kids would be using wheat flour . . .the room is already contaminated.  Just not worth it.  If your child doesn't have a 504 plan, get one.  In it should be that he can be exempt from this particular class. - or, the "non-cooking" portion of it could be taught in another location.     Simply wiping down the counters would not be enough to ensure my son's safety and I'm sure the school wouldn't want to fully "decontaminate" the room daily . . . However, learning to cook is an important skill, especially for someone with Celiac.  Teach him at home or try to find a safe alternative.  We have a bakery here that does classes with kids but they only do sweets . . . 
  14. A negative biopsy only means damage was not found, not that it was not there.  The biopsy can only confirm a celiac diagnosis, not rule it out.  If you have symptoms and a positive blood test, the "final test" would be to try the diet.  If your symptoms resolve (and your blood returns to normal) you can be 100% sure.   It is much more likely that your biopsy was falsely negative than your blood test falsely positive.
  15. Your child has symptoms AND a very positive blood test.  It is likely that your child has celiac disease.  (I would guess you do too, given your issues as well.)     Get a new doctor.   The reason they give the whole panel of tests is because everyone reacts differently and giving a variety of tests makes it more likely that the problem will be uncovered.     My son was positive on only the IgG tests (IgA tests all normal, and he produces sufficient IgA) and he was found to have extensive damage when he had his endoscope.  He also did NOT have the genetic markers, or any classic symptoms - further confusing his doctor.     I was positive on only the IgA tests and negative on all the IgG tests.  My endoscopy came back normal but I clearly have Celiac too.  I had all the classic symptoms and they all disappeared when I went gluten free.   Remember, even if you go ahead with the endoscopy, they may not find any damage or there may not be enough to measure (yet).  This DOES NOT RULE OUT Celiac Disease.     Why doctors want to wait until there is damage is beyond me.  Your child is uncomfortable and you have positive blood tests telling you why.     If you have a Celiac Support group in your area they should be able to advice you about pediatric GIs who are knowledgeable and up to date on diagnosing kids with celiac.