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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.


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About ravenwoodglass

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  1. Itchy skin

    Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it.  Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
  2. It sounds like you have a good doctor. That helps a great deal. It can be difficult if you travel a great deal but if you can get a hotel room with a kitchenette that is helpful  When I travel I carry a hot plate with me, a pot, some utensils and a cheap toaster. I do make sure that I put the cooled hotplate away if I am having maid service as some hotels don't want you to have one in the room.  That way in a pinch I can just heat up some Dinty Moore canned stew with some toast or whatever I can find at a local grocery.  The link Gemini gave you should be quite helpful and I have resorted to just putting my zip code and 'gluten free restaurants' in a search engine and had quite a bit of luck. I do hope you heal quickly but be patient as some issues can take some time.  Eat as clean as you can to keep things going as smoothly as possible. It might be a good idea to avoid dairy and soy at first as those are two things that can give us trouble.  Not saying that will be the case for you but it is better to avoid them at first and then add them in after you feeling a bit better. That way you can better pinpoint if one or the other is also an issue rather than thinking that you are getting glutened.  I kept thinking for a long time that even gluten free packaged foods were 'getting' me and it turned out to be soy protein. That causes a lot of confusion at times. Not to speak of the pain.
  3. Sorry you folks are going through this. Do read the Newbie 101 thread at the top of the Coping section to make sure you are not missing anything that needs to be done to keep him safe. Unfortunately being gluten free involves much more than just picking gluten free foodss. We have to be careful of how food is prepared, have our loved ones brush their teeth before kissing if they eat gluten, check all meds and supplements to be sure they are gluten free and make sure we have our own toasters as just a few examples. I am going to keep my fingers crossed for you both that gluten is simply sneaking in somewhere and that it is not refractory. Welcome and I hope he is feeing much better soon.
  4. The endoscopy is really a pretty easy procedure. You don't have to do the nasty prep that is done with scoping the other end.  You go in, they put you to sleep for a very short time and then you go home. If you really don't desire one then talk to your doctor. You have positive blood work and sometimes doctors will give an official diagnosis with that and a resolution of symptoms on the diet.  An official diagnosis is important so insurance companies will cover follow up testing like bone scans and repeat panels and vitamin and mineral levels etc. Some folks also have a hard time staying compliant with the diet without one and it makes it easier to get your relatives to take you seriously. Do make sure that you continue to eat gluten until all the testing you choose to do is finished. Then you can get on the diet and begin healing.
  5. Celiac testing is quite specific and conclusive with the exceptuion of the TTG which can, as I understand it, at times be elevated due to other causes.  The whole panel does not need to be positive to be celiac. Some folks are only positive on one test. Hopefully your doctor also did a Total IGA as if you are deficient that can cause a false negative. Having elevated liver enzymes at diagnosis is not unusual.  Prediagnosis my doctors were convinced I drank heavily, I don't. My liver panels returned to normal after I healed and hopefully yours will also. Please be sure to not drink any alcohol until those panels return to normal. Your doctor may want to do an endoscopy so do stay on gluten until that is done if you are choosing to have one done. I hope you get some answers and are feeling better soon.
  6. EnteroLab Result - I'm back after 7 years!

    While not considered in any way diagnostic by most doctors I think there may be some significance to the Enterolab result.  If you feel the need for a doctors diagnosis (and there are really good reasons to get one) you should get to the doctor and get a full celiac panel run. Do make sure that they do the newest tests. Keep in mind that only one of those tests has to be positive to be celiac. Not all the panel needs to be in the positive level. Do stay on gluten until all the testing you choose to do is finished. Just because your previous panel was negative doesn't mean it will be now.  
  7. Where is he on the charts in relation to where he was at birth?  If he, for example, started out in the 60th percentile and is now in the 10th that would be a concern.  It isn't going to hurt to have him screened for celiac with a blood test if he starts to show symptoms or has lost a good bit of ground on the growth chart percentiles. That is going to be more reliable than genetic testing. While rare there are diagnosed celiacs without one of the two main genes and more celiac associated genes are being discovered.  
  8. I had to withdraw 3 credit hours short of my degrees (I was in a duel degree program) because of celiac. Not because I had it but because I was undiagnosed at the time.  I also thought of going the online route but decided not to because I learn better with interaction and gave myself time to heal before returning to finish up.   Your fall semester is still 9 months away so you may want to consider not restricting your choices to only online. There is a good chance by the time you are ready to start you will be feeling much better and be well able to attend regular classes.  When I went back to finish up I was a bit nervous about possible glutenings so made sure I was super careful.  All went okay and I was able to finish.  Chances are you will be able to also.  It does take time to heal and to get used to what we need to do to keep safe and that fall semester will have you over a year past diagnosis. You will likely have no problems with attending classes by that time.  Have you talked to your advisor? If not you should as the degree you are working toward may require you to do internships or have some classes that are not available on line.  Your advisor can guide you on the right route to take.  
  9. Not sure when you were tested in relation to the steriods but steriods may give you a false negative on testing. It you are celiac you may show up positive to a lot of stuff on the allergy testing that may resolve on the diet. I tested positive to 98 out of 99 things I was prick tested for by my allergist. He later explained that my immune system was in 'hyperdrive' because of the celiac and that once I healed I would likely loose many of the allergies. He was right as all but two allergies resolved. I had both DH and hives.  The hives were large bumps that would fade in a relatively short time. DH presents with small blisters and symetrically. I also found cold cloths to be the best defense for the itching. Also if they are hives benydryl (sp?) should give some relief. The name brand last I checked was gluten free.  I hope you get some relief soon.  
  10. Celiac distress

    Because your symptoms were so severe you should call your doctor and ask if you should stay on gluten until the biopsy. Normally you are advised to keep eating at least a slice or two of bread a day until all testing is done. It sounds like you must have had positive blood work so you do have celiac even if your biopsies should turn out to be negative.  Go with what your doctor advises. Do check out the Newbie 101 thread at the top of this section it will have a lot of valuable information for you. It can be a bit of an adjustment to be gluten free but you will get the hang of it. Ask any questions you need to ask and I hope you heal soon.
  11. how long does gluten stay in your system?

    If the villi took 2 years to recover then folks who had been gluten free for a couple months would not need to do a gluten challenge before a biopsy. The villi actually regrow in a pretty short time but it does take time for us to heal from the effects of the antibodies.  There are folks who just don't tolerate dairy whether celiac or not and you may be one of them.  As far as maltodextrin is concerned I have been gluten free for over 13 years and have never seen it made from wheat in the US. If it was made from wheat and in a product sold in the US it would have to be labeled as such. I understand you are new to the diet and still quite angry because it took 3 whole months for you to be diagnosed (sorry if that seems a bit flippant but it took over 40 YEARS for me to get one and I was almost dead) but not all doctors are liars and frauds. Some are just woefully ignorant about celiac but that is getting better. The proof of that is the short time it took for you to diagnosed.  There are folks here trying to help people like yourself with info that has been well researched. Please be sure the info you post is accurate
  12. Support?

    I would have liked to have had a support group in my area.  I went over 45 years undiagnosed. The last 15 were hell on earth and left me unable to travel the hour or so I would have had to go to meet with others like myself. You may want to check with your local hospital and see if you can get one going.
  13. Protein shakes

    I agree you should think about dropping the granola if it contains oats. Maybe look for one that doesn't have oats or oat fiber if you feel you must have granola. Have you tried Cream of Buckwheat? That is high in easily digestable protein and quite easy on the tummy. Have you tried Hemp milk? You could use hemp milk combined with a hemp protein powder for your shakes. A banana added to the chocolate flavor is quite tasty but if you don't like chocolate they do make vanilla. Be sure to be taking a good gluten-free multi while your diet is less than ideal. The muscle cramps could be telling you that you need more magnesium (a banana a day may also help with that need). Try to add a bite or two of any tolerated food whenever you think of it throughout the day.  Your body needs nutrients to heal and getting those nutrients can be hard when you really don't feel like eating anything.  It can be difficult to overcome a food aversion when eating makes you feel ill and it is a slow process but you can do it in time as you find more and more things that you can tolerate.
  14. Is this normal?

    Gut reactions can be delayed so you may find that reaction shows up at some point in the next 72 hours. Do tell your GI about your going gluten free before the biopsy and how long it was. Even if you should have a negative biopsy that is not going to negate the positive blood work. Just go back to the diet strictly after the procedure is done.
  15. With positive blood work she has celiac.  If the gene testing is going to be a strain on your budget personally I would forgo it. There is also the VERY rare chance that she could be in the small percentage of celiacs that don't carry one of the most common associated genes.