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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About NY547

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  1. Hi Everyone. My question for you all is: have you ever had extreme fatigue and weakness at certain times of the month? My daughter has very bad abdominal pain which radiates around to her back, but she also gets so weak she can not stand up to take a shower or lift her arms. A few months ago, they saw cysts on ultrasound and her LH/FSH hormones were out of whack. They put her on BCP. Her cycles are now regular, before they were every 3-4 months. Still very heavy. She gets these "bouts" of fatigue and pain every 6-8 weeks. She is still getting them after being on BCP 3 months. Her last ultrasound a few weeks ago came back negative for cysts, so her dr. says the pills are working and wants her to see a gastro doc. Is the fatigue associated with having the cysts or should we go back to the GI. She has had numerous blood tests for celiac which have all come back negative. Her Total IgA level was low, but within normal limits. Docs have also ruled out lyme, mono, thyroid, rheumatoid arthritis and a host of others. Thanks for any feedback. Her grades are also plummeting due to her absences from school. She is only 15.
  2. I agree with WW340. The lipid panel doens't seem to be anything to worry about, however, when my daughter was 13 her cholesterol was also slightly elevated. (200, with ref range <200). Her new doctor wants to have the lipid panel repeated (fasting) just to see where she is now at 15 years old. It wouldn't be a bad idea to ask to have it repeated and also check thyroids. Hypothyroid can cause an increase of cholesterol from what I've read.
  3. In my oppinion, he is positive for celiac. Celiac can affect/attack more than just the GI tract. Just ask the people with DH! He has antibodies to Tissure transglutaminase which is a VERY SPECIFIC marker for villous atrophy caused by gluten ingestion. He may want to have the test repeated just to be sure there was no lab error since the other 2 tests were normal, but I know that many doctors will ONLY run the TTg IgA when screening for celiac anyway, as it is the most specific. There are also latent or silent cases of celiac where people experience no GI systems, however the damage is still being done and can affect other systems and organs, especially the liver and kidneys. I would definately have your family member look into the possibility of celiac further to avoid future complications.
  4. Hi Lisa, My daughter has BC/BS and has had the blood antibody panel for celiac ordered through her primary care provider. They even checked it a second time a few months later. No problems with reimbursement. Of course there are many forms of BC/BS, so if you are not sure, call the 800 number and find out for sure which ICD codes will cover the test and be sure they are listed on the labslip when you get your blood drawn. You don't have to wait for an appointment with a specialist to get the blood test done. If you decide to follow up with a GI, whether the blood work is positive or negative, be sure to check if you need a referral. We DID need one, which my daughter's primary provided and even set up the appointment. (It still took 2 moinths even though the doctor's office scheduled it) Good luck, I hope you find some answers.
  5. I think I would stick it out another 2 weeks until the repeat blood work and see what the vitamin levels and celiac antibody show. If your B12 is less than 400 that is low enough to cause some symptoms, and could be from malabsorption even if you are not anemic, same with the iron, TIBC test. You could still be iron deficient with a normal low/normal iron level but have a low % saturation. The docs usually treat those 2 as symptoms and tell you to take more supplements, but often don't try to find out WHY there is a deficiency. Ferritin is another good indicator of iron storage. I agree with the others, often doctors will wait til you're in the hospital half dead until they will actively look for celiac. I don't remember all the details of your last posts, but remember you had many symptoms like my daughter's. When she goes back on gluten she gets sick, epsecially that pain on the left side which you have mentioned in the past, but after a week or 2, most of the severe syptoms subside and she feels better, though not great. Maybe some of your symptoms will subside as your body readjusts to gluten and you will be able to stick it out. When you return for the blood work, I would ask about a lyme titer? I don't know how common it is in the UK, but Bell's Palsey is a numbness on 1 side of the face which is often a precurser to lyme. Depending on how you feel after the blood work, and after discussing the results with your doc, then I would make the decision whether to wait for the biopsy or not. Kind of a 1 day at a time approach. Hang in there for now, but listen to your body! You may never have positive antibodies to celiac anyway! Good luck
  6. Jenna, you definately have celiac. I would think that your doctor would want to schedule you for an endoscopy to see the extent of the damage in your small intestines at this point, but not all feel it is necessary. (The TTG # usually reflects the amount of damage that has occured, and any positive # is indicative of damage to your villi) The H Pylori is not part of the celiac screen and is a test they do now to check for ulcers, which can have the same symptoms as celiac in many cases. They were probably just ruling it out when they ran the celiac screen. The H pylori usually responds well to antibiotics, but in your case, a gluten free diet is definately needed. Many times they also will check for Lyme disease which also mimicks celiac and can co-exist.
  7. TIGANO, I agree with the others also, you could still have celiac with a negative Bx. You could check to see exactly how many samples were taken as the disease is very "patchy" and ask to have them checked with a special stain which checks for intraepithelial lymphocytes (IELs) Even if there is no bluntuing or villi damgae, an abundance of the lymphocytes is the first stage of detection. Also, many people are gluten sensitive which means they can have all the same symptoms as celiac, but no actual damage to the intestines. The symptoms will usually respond to a gluten free diet. If you have IgG antibodies to gliadin, then in my oppinion, chances are you ARE reacting to it! My daughter only tested positive to the IgG and she always feels better going gluten free, though she has not been strict with the diet. IRADTKE: The next time you go for bloodwork, I would ask to have a b12 level done also, as a low level can cause many of the symptoms you describe. I am guessing they have already checked for anemia and iron levels? Your family practitioner should be able to order a celiac panel, which would include the antibodies to gliadin and TTg (Tissure Transglutaminase). If your dr is willing, a thyroid test would be helpful too. FreeT4 and TSH. Good luck to both of you!
  8. I've seen a few article on DQ1 also: Try this link, if it doesn't work search for Edwin Liu, DQ1,celiac. http://jccglutenfree.googlepages.com/genetictesting Here's a portion of his article: Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. About 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, so it may be questionable practice to rule out Celiac Disease soley by the absence of the main genes (HLA DQ2 or HLA DQ8). While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found it in 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population. From "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones: "Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity." (In his research, Dr Liu suggests that If you have subgroups DR5 and DR7, they can mimick DQ2 even if they are on 2 different chromosomes.)
  9. Gluten Intolerance

    OK, I have to jump in here. Maybe I'm missing something... I do agree with kbtoyssni in that gluten intolerance can often become celiac down the road. And I also agree you can have all the same symptoms as a person with diagnosed celiac disease even without the villous atrophy. My concern after reading all the posts is DACAT, how do you know you do NOT have celiac disease? From what I read you have only been tested for Gliadin antibodies. The ema and reticulin have been known to come back negative in 60% of people with DIAGNOSED celiac! You may want to consider asking for the TTg antibody (tissue transglutaminase) and a total IgA level. Your Gliadin IgG is high in both blood and saliva, yet your gliadin IgA was in the normal range. I would not rule out a diagnosis of celiac just yet. Especially since you mentioned "leaky gut" I would talk this over with your doctor before staying gluten free any longer. Also, there are many seronegative celiacs out there, who test negative for the TTg Iga and still go on to show signs of damage on the endoscopy. The IgA levels are indicators of the amount of damage that's been done, so if you only have partial villous atrophy at this point, or only the intraepithelial lymphocytes (IEL) your blood tests could still come out negative. One last point, the celiac genes they test for are the DQ2 and DQ8. It has also been shown that people with DQ1 can develope celiac, but their symptoms are often more outside the gut (ie neurological, dermatitis herpetiformis, etc). Just because you didn't test positive for DQ2 or DQ8 doesn't mean you will never develop celiac.
  10. If damage was found in the intestines with the endoscopy then chances are, it is celiac. Crohn's usually only affects the lower portions of the GI tract from what I understand. It is not uncommon for people to have IgA deficiency with celiac. Many labs only check the TTg (tissue transglutaminase) for IgA as an initial screen. If suspicion for celiac is still high, they will perform the TTg IgG level after determining if a person is total IgA deficient. Due to your IgA deficiency, the doctor is mostly checking to see if you have antibodies to TTg by using the IgG class of antibodies. He may also be checking your total IgG level to be sure you are producing enough of those to begin with. Since the antibodies correlate to the amount of damage in your intestines, I would think that the TtG IgG should come back positive in your case, since you have already had a positive biopsy, however, keep in mind that some people never produce the routine celiac antibodies at all. There have been studies where even people with total villous atrophy test negative to the antibodies! Only 77% show antibodies and roughly 29% of people with partial villous atrophy had positive antibody tests. The endoscopy results still remain the "gold standard" of diagnosing celiac disease. Since you have already had a positive biopsy, and have had blood work drawn, you may want to immediately embark on a gluten free diet. There are links on this board regarding the studies I referred to, sorry, I can't remember the links. If you search for seronegative celiac you will find more information I hope this helps. Welcome to the boards, and Good Luck!
  11. As I read your post, Lyme disease definately came to mind. With the severity and rapid progression of symptoms though, it sounds like there is definately something else going on. I am assuming they ruled out MS? There are many forms of the disease, some with very rapid onset. Research has linked MS to celiac and I have a friend whose husband was stricken with MS, and afew years later, their son was diagnosed with celiac. It is possible to have both, there is a close genetic association from what I understand. I will keep you and your daughter in prayer as you seek for answers. Wish I could offer something more....
  12. Guten Tag! I think it is quite a coincidence that all 3 results came out 1.2 I would question the results if they were mine! Many doctors just order the Tissue transglutaminase test (TtG IgA) as a screen. It is good your doctor included the IgG as well and also the gliadin antibody. I would also ask for the total IgA (total immunoglobulin A) as well. The endomysial antibodies you see on these boards are often part of an initial screen, but are only positive in 60% of confirmed celiacs anyway. So many doctors just order the TTg instead, which is fine as an initial screening. It is possible that 1.2 is the low end sensitivity of the tests, so that is what they report, while many labs just report the numbers as <1 or less than 3, whatever the cutoff value is. I would ask the doctor if that was the case, then it would make sense that all 3 numbers were the same. I hope this helps! And the symptoms you describe do sound like celiac! I would definately follow up.
  13. You're welcome! My daughter also had negative blood work and positive results with enterolab. About 4 years ago her Total IgA was just under the normal range, but not enough to be considered a true deficiency. We had it checked again and her #s are a little higher, but still on the low side of the normal range. The IgA test has differant ranges for differant ages. I also wonder if the celiac markers corrsepond to the total amount of antibodies being produced. My daughter is 15. She also gets much better on the gluten-free diet, but without a definitive diagnosis, she will never stick with it. Also keep in mind that the TTg and gliadin tests correspond to the amount of damge already done to the intestines. The blood tests will often be negative until substantial damage has occured. There have been studies done which show that many people with only partial villous atrophy test negative on blood tests. When we tested with enterolab, her antibodies were positive, but the fecal fat score was still within the normal range, showing she is having a reaction to gluten, but has no damage yet. In the fall I may retest with enterolab and if her fat score has increased, then I will have the endoscopy done. Until then, she eats normally and when she gets her bouts of illness, or "crashes" as she calls it, I put her on a gluten-free diet for a week or 2. She is always better within a couple days. This approach saved her just prior to taking her finals. Good luck to you and your family. I agree, it is definately not easy for a teenager to stick to the gluten-free diet. It will be a great day when they can positively diagnose people without waiting for the damage to be done!
  14. Yes, IgA or total IgA is short for immunoglobulin A. It tests for your body's ability overall production of the IgA class of antibodies. If you do not produce them anyway, it definately will make the celiac tests for IgA (gliadin and tissue transglutaminase) come back negative, but you could still have celiac, If this is the case, many labs will reflect the celiac panel to include gliadin IgG and TTg IgG to check for an IgG response. Some labs still routinely check for the IgGs as part of the routine celiac panel. You are wise to have them check for total IgA as not all labs and Dr's offices perform it as part of a regular celiac screen.
  15. Your daughter's Bx was positive! Wow. I'm happy you finally have an answer. It is a difficult position to be in, you want your loved ones to be healthy but at the same time you are hoping everything comes back negative. Well at least now she knows. I remember when we had my daughter's blood work done last year. When the results came back negative, I was happy, almost celebrating, her eyes filled with tears. She said now we still don't know what's wrong and I'll just keep getting sick. I think that is mostly why I am still here on these boards, trying to find out what's going on. My son had "anger" issues when he was younger. His psychologist said that in children, depression offen manifests itself as anger. He would have these huge rage attacks, set off by such little things. It would take him 30 minutes to an hour to calm down. He would get very quiet, almost in a brain fog for a little bit before finally returning to his regular self. Thank God he doesn't get those anymore! We are on the right track with him, now we just have to get his sister healthy. She ate gluten this weekend, and by Monday Evening she looked horrible! Her eyes were all glassy and teary and she was getting more fatigued again. Yesterday she seemed OK, but she drank one of those energy drinks. EEK, I don't know where she got one of those from! She did mention she had a headache, but she never gets them when on gluten-free diet. I'll see how she is after school today. I know that being off the gluten she seems much happier and easy going, has more patients, especially with her brother. Take care. I'm so glad you found some answers. Maybe you could ask the doctor next week about enterolab for your grandson and sons. Since celiac disease is confirmed in your family, maybe that would be all that is needed to dx your boys. Hopefully the doc will explain how serious it is so your 19yo will agree to be tested. Good luck! Thanks for keeping us updated.