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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 Gemini

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  1. If a food product contains wheat, it must be labeled by law. I have been gluten-free for 11 years and have found that this whole concept of hidden gluten (aside from cc) is really not quite true. You have to learn how to read labels correctly to identify what is in the food you are eating. If in any doubt, do not eat the product until further inquiry is made. Rashes happen for many different reasons but they do seem to occur more frequently in those with autoimmune or allergy problems. Those would probably be the 2 main causes of them. It can be incredibly hard to figure out and doctors are not much better at helping. This is why my 89 year old MIL is trying a gluten-free diet because she is having rash and itching problems that are driving her crazy. No help whatsoever from doctor-land. They just keep feeding her prednisone and that is not a good choice for anyone, never mind an 89 year old. It's a wonder any of us get the help we need!
  2. Hives can be caused by so many things but primarily, it's either allergy related or autoimmune related. You can have autoimmune hives which can result from having one or more AI diseases. I get hives but mine pop when it gets warm and wet......I am severely allergic to molds. They just about appear and disappear quickly, if the weather goes from wet to dry. I use Benadryl to keep them from getting too bad, when needed. I also use children's Benadryl because it works just as well as the adult formula but makes me less drowsy. You can be more susceptible to environmental allergies when you have Celiac. Is this a problem for you and your sister?
  3. The clues keep mounting, don't they? If more docs paid attention to all this, they wouldn't be complaining about how many people go undiagnosed! Part of the problem is the medical attitude.
  4. Although Hashi's can raise tTg levels, usually it's a lesser increase than a 124. I have both Celiac and Hashi's. would not be a false positive at all. You either just have Hashi's or you have both Celiac and Hashi's. Seeing as Hashi's occurs frequently with Celiac, you need to eat that awful gluten for testing. Also, Synthroid may not be the best choice for treatment with someone who has autoimmune thyroid disease. Very often, many find that treating with both T3 and T4 hormone works the best at taming down those symptoms. If you are still symptomatic after treatment, they need to test you for your thyroid hormones, T3 and T4..which very often they do not. They go by the TSH, which is not the best choice for monitoring your levels. You could also have celiac and not be absorbing your meds well. Something to keep in mind.......good luck with testing!
  5. Yes, everyone has the right to monitor their diets as they wish but keep in mind that many companies have shared facilities and do a good job to prevent cc. It is not an assumed automatic that food has been cc'd just because they are made in a shared facility. Lots of Celiac's find companies they can trust, who do not make them sick, without being certified. I assume you never eat in a restaurant or in other people's homes if gluten is present anywhere on the premises?
  6. ANA and Celiac

    I will also add the ANA can come down with long term adherence to a gluten-free diet. I have 3 other AI disorders, along with Celiac and 11 years ago, at my Celiac diagnosis, my ANA was 1:2560 and the last time I was tested in 2013, it was 1:320. Lower the inflammation and numbers go down!
  7. With blood results like these, your husband most definitely has Celiac Disease. The biopsy is just to check to see how much damage. Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these! Thank goodness he was able to have a definitive diagnosis and reason for his symptoms! Good luck!
  8. Lacie, a few comments on your test results.............while they are certainly not what doctors like to see when trying to rule Celiac in or out, they tell a little story . The EMA test was positive and you should know that no other disease will cause a positive on that except for Celiac. When you have a positive tTg and a positive EMA, that is pretty much a slam dunk for Celiac. You tested borderline on the tTg back in January and it would not be highly unusual for that to test normal now. Lots of folks never trip an antibody test but still have full blown Celiac. There was little difference in your tTg levels so that is not a reason to rule Celiac out....especially with a positive EMA. The EMA is expensive, has to be done manually by a tech and makes use of immune-fluorescence so it is not likely to be a false positive. You also have Hashi's thyroid disease and that, along with Type 1 diabetes, are the 2 top associated conditions that occur frequently with Celiac. Then you have your positive gene testing. Doctors rarely take into account associated conditions you may have or any other clues like vitamin deficiencies. Having a low Vit. D doesn't necessarily mean Celiac as many people living in northern areas may have low Vit. D from a lack of sun. Even if the biopsy is negative, I would still do a strict dietary trial. There still is a very good chance you have it, with your history and medical test results. I also have Hashi's thyroid disease and they blamed that for everything that was wrong with me. I ended up figuring it out myself and requested the testing that they never offered. Of course, 30 years ago, no one was looking for Celiac but I wasn't actually diagnosed until I was in my mid 40's. Good luck!
  9. Yes, I agree with cyclinglady. Think of it this way......Celiac Disease can cause ADHD, anxiety and the list of other issues your son has suffered from. ADHD is not a diagnosis of anything. They are symptoms and most doctors symptom treat by putting these kids on meds, which makes me crazy. No 9 year old child should have all these adult problems so there is an underlying cause to it all. So many people have come onto this forum and told their stories of horrible symptoms such as these and then after going gluten-free, over time, they all disappeared. Even myself, who never had any anxiety issues ever in my whole life, will have 2-3 days of severe anxiety if I take a gluten hit. I have not been glutened since Sept. of 2014 and that was the last time I had any anxiety issues. There is most definitely a connection!
  10. jenn....did they ever do a complete Celiac panel? If not, then they haven't done enough to rule Celiac out. A negative biopsy does not rule it out, either. I say this because all the symptoms your son has and has had, both gastro and neurological, scream of gluten intolerance on some level. I would not rule out Celiac or NCGI just yet!
  11. Check out this thread: I am not sure if gluten-free oats would keep tTg elevated. I tolerate them just fine so have no experience with this. Has your daughter been tested for other AI diseases that would cause tTg to remain elevated? Have they repeated the DGP along with the tTg?
  12. Yes, jenn....thrush can be common with Celiac. I had thrush problems for years and it never truly resolved until I discovered the Celiac. I would follow the anti-candida diet and take meds but it always came back, until I went gluten free. All the good gut bacteria that keeps yeast and other organisms in check are not usually there when a person has Celiac or eats a poor, processed food diet. So, the bad bacteria run amok and you end up with thrush. It can also happen with repeated antibiotic use because antibiotics wipe out all the good bacteria, along with the bad. You are an RN so get what I am saying. Did they prescribe anti-fungals? Poor can be painful if it gets bad enough.
  13. I spoke with my co-worker this morning and he was only too happy to help! The name of the medication he takes is Promacta. It is a synthetic protein that stimulates the production of platelets in the bone marrow. It is not an immune-suppresant, which is always preferable. We are in the United Sates so what is available in your country may be different. It is also insanely expensive, as meds are in the US, but our insurance system covers the cost....or at least the insurance we have through our work covers it. It can be complicated here. You may be able to get this where you are and it will probably not cost as much as you have a different system. The other medication is called N-Plate and that is an injection you have once a week. That kind of limits you traveling because you have to make sure you receive this injection once a week. I believe this in not an immune-suppresant either. My co-worker did not use this because he likes to travel and that would have been problematic for him. These are 2 options and there are more. He suggested you go to: Have they pestered you about removing your spleen? Don't sweat any mistakes you make with the gluten-free diet. We all do in the beginning. I also see why you may just opt to go gluten free without a definitive diagnosis. You are between a rock and a hard place and the wait times for an endo can be long. I would go gluten free myself if I were in your shoes because it is important. ITP is an associated condition to Celiac because it is an autoimmune disease. You have the ability to trip for other AI's with Celiac, if you are still consuming gluten. Don't get me could trip for more AI disease even being gluten free but the odds are much slimmer. I have 4 AI disease in total and I believe it's because my Celiac diagnosis was missed for so very long. I am happy to say it's been 11 years gluten-free for me and I have not had any more rear their ugly heads.
  14. Sorry....I just don't buy into this hype that many Celiac patients do not heal. I have been doing this for a very long time and have seen a lot over 11 years and am surprised how people "follow" a gluten-free diet. If you do it right, then you should heal, unless you have underlying problems or don't fully understand how to do the diet correctly. Being glutened once in a great while will not keep you from healing, either. I see many Celiac's cheat and then wonder why they do not feel good. My new doctor, who is very well versed on Celiac to my surprise, gets really annoyed because she says many patients are either not compliant or fail to learn how to follow the diet correctly. I also see this with the diabetic population. Lots of cheating going on and poor dietary habits which they think can be remedied by more insulin. The protocol you quote is one that every person should be following, not just Celiac's. Healthy eating of whole foods, with some carbs/processed foods thrown in. I do eat some processed foods because, as a classic Celiac, I am thin and can always use a few extra pounds. I cannot be that lucky that I am magically avoiding all these so-called contaminated foods. I know they exist but I tend to buy very mainstream brands, from reputable companies that do a good job of keeping their food clean. You do have to be careful but that's where education comes into play and experience. I have not been glutened since Sept. of 2014 and haven't found that hard at all. I also do not eat out that much and have found that's where you are most likely to be hit, not from packaged foods. You know how I got glutened? Like you, it was a convenience thing. I got hit by a salad from a restaurant. I ate out because I was leaving on an international trip the next day and there was no food in the house. I thought a salad would be safe.....but not from Wendy's! It was the only fast food place I ever went to because they had salads. Never again! I was able to eat some processed foods from good companies while early in the diet because I had to. I was 20 pounds underweight and it is really hard to gain weight on a whole foods diet. But, my experience is that many of the processed foods out there are safe for us but you have to make sure you pick good, mainstream companies. Do the research, as you should do. If that many companies had contaminated foods, no one would heal. But many, many people heal well so there are more things at play here than just saying processed food is contaminated. When food and special diets are involved, people get very emotional and don't always do what they should.
  15. The doctor should be doing a full Celiac panel and not just a tTg. If a full Celiac panel is done and the tTg and EMA are positive, then a biopsy is not needed for confirmation. However, in minor children, doctors do not follow this protocol and seem to want to insist on a biopsy. I always felt it depended on blood results and symptoms in order to have a biopsy done. I had the full Celiac panel, failed all the tests by large numbers (close to what your son had) so refused the biopsy. I was too sick anyway to do one but there was no doubt I had Celiac Disease. Your son is feeling about what many people feel when their tTg is still that high. Six weeks is just the beginning of healing so he has a while to go and it still depends highly on the person. I was so sick that when I went gluten free, I started to heal immediately and the extreme gastro symptoms cleared up relatively fast. I was able to return to work after 1 week but was still tired for awhile, until the anemia resolved. I was still able to function well enough at work, though. If you want to have a biopsy for your son, then continue to feed him at least 1-2 slices of wheaty bread per day or the equivalent until he is scoped. Although, I think a doctor would have to be an idiot to not recognize Celiac in a person with a very high tTg like this. Don't worry....your son will heal well because he is young but do give it some time after the testing is complete.