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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 appletree729

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  1. Thanks so much for your reply - I'm not sure that the TTG IgG was included in my last round of tests - if it was, it was negative, so if that's the case, it's higher now. The reason we did the biopsy was because of symptoms (mostly unexplained abdominal pain), the anemia and positive genetic tests, and also because my kids are having so many problems and are suspected of having celiac. My one daughter had some positive bloodwork last fall - it was *just* positive though, so her GI advised us to keep her on gluten and retest in several months to see if it goes up - which she is due for now. That was the deamidated gliadin test I believe.
  2. I've had a negative biopsy and mostly normal labs from a few years ago. I asked my doctor to retest recently and everything was normal with the exception of my TTG IgG test which resulted in a strong positive - here are the results: IgA normal - 161 (range 91 - 414) deamidated gliadin Abs IgA - 7 (range 0-19) deamidated gliadin abs IgG - 3 (range 0-19) tTg IgA - <2 (range 0-3) tTg IgG - 14 (range 0-5) I also have a positive genetic test although I know that doesn't mean all that much. I've been occasionally anemic in the past and have hashimoto's thyroiditis as well, as well as low vitamin D. I have a follow up with the doctor next week and I really would like to know how to approach this - if it's not celiac disease, something is causing the tTg IgG to be elevated, and I'm assuming it would be beneficial to find out what it is... From what I'm understanding, this test is slightly lower than 90% specific to celiac disease, so there is about a 10% chance that it is caused by something other than celiac disease? What are those things? I've read diabetes, liver disease, crohns, or other autoimmune conditions (hashimoto's?)... I've had a pretty complete blood panel done recently and nothing points to diabetes or problems with my liver. And my GI doctor said there was no evidence of crohns. So is it just the hashimoto's? So I'm left wondering if it's worth pursuing more testing (if we missed any blood tests - my doctor didn't seem that familiar with everything and subbed in a different test than the ones I asked for which included the EMA - she said it had been replaced by something else? I don't know what else off the top of my head, but I got the list from here. I understand it might not be celiac, but I want to actually know *what* is causing it so I can do what I can to correct it. If I have celiac disease, I'd really love to have a diagnosis because my children are having issues as well and it would be extremely helpful to know if it runs in the family. I do feel much better being gluten free, so I know I should probably not be eating it, but I want to get answers. Thanks for any insight. I have searched around here for some answers but nothing is specific about alternate causes...
  3. Thank you both so very much for your responses! I really appreciate it - looking forward to hopefully getting some answers. I'm quite sure she has the gene - she specifically has not been tested, but others in our family have. I have two copies, my other daughter has two copies, my husband has one copy but celiac runs in his family and although all of his testing came back negative, he was so sick he went gluten free anyway and is doing *much* better. He is pushing a bit to get the kids gluten free as well, but I really want a diagnosis for them before we go that route. Anyway - hope everybody has a good day - thanks again for taking the time to respond.
  4. My 8 year old daughter's bloodwork indicated a high deamidated gliadin (IgG) result last fall (21 - positive was anything > or = to 20). Her doctor suggested we retest after several months since the result was only slightly positive - thinking that perhaps it was the beginning of celiac? Or maybe nothing or something else besides celiac. Anyway - before we test again, I was wondering if anyone might mind catching me up on the latest as far as testing. My daughter has a very high level of anxiety about needles and I want to make sure we get all of the appropriate tests and won't have to go back! Here is what has been ordered: DGP - IgA & IgG IgA, Quant, Serum T-Transglutaminase IgA Endomysial Ab IgA w/rfx - LC Our doctor is a pediatric GI who specializes in celiac disease, so I'm guessing that's a good selection of tests to order! I'm still curious though, as to why the positive test earlier wasn't treated with more concern… I'm also curious to know whether or not there are any additional tests that are recommended. Also - is it still thought that a biopsy is needed for a diagnosis? Or are there any tests or combination of positive tests that are now considered sufficient to diagnose without a biopsy? thanks so much for any advice!
  5. I know :/ I'm trying to be positive about it all, but my understanding was that the test result was more significant than she seemed to think it was. But then I also feel like I'm being a hypochondriac sometimes, and want to respect the doctor's training and experience (but not blindly). Anyway… we are going to go ahead with the six month trial. Her symptoms at this point are not so bad that they are really affecting her quality of life or anything, and the doctor did give us the recommendation to repeat the labs earlier if her symptoms worsened. With everything we've been through with my other children as well, I've come to really appreciate the importance of an actual diagnosis. Especially with children. There also is that possibility that perhaps it is not celiac disease and I'd like some answers on that then as well… we still don't have answers with the other kids (one of them has even gone through with the biopsy) so perhaps it is not celiac after all.. although my gut (pun intended, lol) tells me it is… who knows….
  6. Update time! Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/ She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done). She also said that a positive result on a deamidated gliadin test could also be caused by some other conditions… she specifically mentioned severe acid reflux or food allergies. So my daughter's result could either be from one of those, or it could in fact be *early* celiac. So the plan is to keep a food diary for at least a week, along with noting symptoms, etc. then continue on a regular diet for 6 months and then test again. If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs. If her symptoms worsen, we do the labs closer to the 3 month mark. I wanted to update for anyone who might find themselves in a similar situation Of course I wish I had every answer now, but this is the way things go I suppose… one step at a time. I can wait for 6 months
  7. Thank you, Nicole!! I have not seen that chart yet, so I'm glad you took the time to post it again I am so very curious to see what her doctor has to say about all of this...
  8. Just wanted to post an update. I emailed the doctor today after not hearing back from them last week (I had left a message via a receptionist), and I just got a phone call from the GI dept requesting to see her at 2pm tomorrow! Hopefully I will be able to update with more information after the appointment, in case anyone else out there is wondering about this specific test and maybe finds themselves in a similar situation.... I suspect she is going to want to do more complete bloodwork (which I'm dreading because my girl has extreme anxiety about needles ) Will let you all know how it goes!!
  9. Rash Question

    It's only the end if you choose to make it the end Go see another dermatologist and request (demand) a biopsy. Bring in some literature with you that describes DH and the similarities between what you have and DH, the proper way to do the biopsy, etc. and use it if they question the need to biopsy. Be respectful and polite and have a line on hand to say if you start feeling frustrated.. like "listen, I very much respect your opinion and knowledge on these things, but I've been suffering from this condition for many years. Please, I'd like to respectfully request that you perform a biopsy." And then stop talking. It's like sales - the less you say the better. The minute you "request" the biopsy, just shut up Put the ball in their court. In my experience, there are not many doctors that will flat out refuse a direct (and reasonable) request like this unless you keep talking and saying things like "I'm use not sure what it is…" "do you think this looks like DH?" etc because that gives them something else to answer and to refuse to do it in an indirect way "oh.. this is not characteristic of DH, so there is no need for a biopsy" If you say "I'd like to respectfully request that you perform the biopsy now". They either have to go ahead and (reluctantly?) do it, or they have to say a direct "no" to you, which is uncomfortable.
  10. My son also has migraines that only affect his vision. His experience is a little different (its called "Alice in Wonderland Syndrome", where there are perceptual changes, like things look really far away, or like he is huge and all his surroundings are small/far away). He will also "see colors", dots, etc, which I think is the more typical visual disturbance seen with ocular migraines. If migraines are suspected, I would make sure to have her seen by a pediatric neurologist if she hasn't been already. My son is not diagnosed celiac, but pretty much our whole family has some sort of GI thing going on, and we have the DQ2 gene, and a family history of celiac, so we are trying to be as thorough as possible with testing.
  11. Thank you so much for the reply, Lisa! To answer your questions - total serum IgA is 104, within the normal range (reference is 41-368 mg/dL) tTG - I'm assuming this is the tissue transglutaminase test? if so, it looks like she was only tested for the IgA and *not* IgG. IgA was within normal ranges. No nutrient testing so far. She is 7 years old, has had the basic celiac panel done a few years ago, which was normal. But according to our GI, it's important to test often for children in higher risk categories (which we are placed in - lots of GI symptoms, we have the genes, and at least one family member has doctor diagnosed celiac - but this is my husband's aunt - so great aunt to my child) And yes, she does have symptoms - she's growing fine, but lots of tummy aches and loose stool. And some behavior/very high anxiety/intensity of emotion issues - maybe related, maybe not! She also often gets a skin rash, but I'm not sure it's a DH rash - doesn't seem as itchy as people describe. The GI specialist is a great celiac doctor - she's the director at the Center for Celiac Disease at CHOP. We've seen her for my son's issues (he's 2 and has FPIES, as does our other daughter) and are in the process of waiting for his follow-up appt as well. Unfortunately, there is no chance of moving the appt up, but we're on the waiting list if there are any cancellations, and I've left a message for her to call me about the result so I will have a chance to ask her about diagnosis based on that result, gene and gluten-free trial as opposed to needing to do a biopsy as well. I should also mention that she is not the one who requested this bloodwork, which is obviously incomplete. This was our regular pediatrician, who only did it at my request (which I don't think I was specific enough about!) And I will also make sure to ask her your question about what a positive result could be if not celiac disease… THANK YOU for your response, Lisa. I just want to get to the bottom of this, so REALLY appreciate you taking the time to share your knowledge
  12. One other thing that I want to mention - you said something about waiting until they are older for the blood test. According to our doctor, it is very important to NOT wait with a child. She is one of the more prominent docs as far as pediatric celiac disease is concerned, and says that if a child is diagnosed after they turn 10 years of age, their chance of acquiring a different auto-immune disease later in life is dramatically increased - I think like a 25% increase. So it's very important to have testing done early (and often if they are in a high risk group - a sibling or parent with celiac, as an example… because people can develop celiac disease even after negative testing) Here is a video where she talks about it. There is another one somewhere that talks about the specific tests needed and diagnosis information. One more thing to note - if you decide to try to get bloodwork done, it will be very important for you especially to MAKE SURE that you request the exact tests, and all of them, that are needed, or might be needed. This is one thing that I'm unfortunately dealing with right now with my own daughter. You don't want to have to go through all of that only to realize that she is low in IgA, and now needs to go get a whole new round of tests done. Your doctor likely will not know which tests need to be run (they often just check off "celiac panel" and are done with it - this is not enough if you want the most comprehensive testing and want to avoid needing to go back for more blood work!!!!
  13. I can relate - my 7 year old (who I posted about in the other thread that you responded to!) has very, very high anxiety like you describe - maybe not quite as severe, but what you described rang a bell for me... I'm pretty sure that if you want a definitive diagnosis, you will need to at least get bloodwork done at some point. Has she been to a GI doctor? If there is enough symptomatic evidence, they may want to do an endoscopy and then you can do the blood draw after she is sedated. This is what they were going to do for my son, not because he had anxiety issues, only because it was easier and it seemed the sort of routine way they did it. But this is only because there was enough evidence form his symptoms for them to be thinking celiac (or something else that could be diagnosed via endoscopy) in the first place. If you go that route, of course you will want to ask what sort of sedation will be required - IV sedation obviously wouldn't help her any as far as the anxiety is concerned! But when my youngest daughter needed an endoscopy, they used a small mask with gas and I was able to stay with her until she fell asleep. So no needles while she was awake. Anyway, if that is not something you want to do, my only other suggestion would be to help her cope with the anxiety (which you should be doing anyway, and I'm sure you are!). She's going to have to get bloodwork done at some point. And she needs to learn coping mechanisms for her anxiety, and she needs to practice them with role play situations, and also in real life. Sometimes we need to hold our child's arms or legs still to protect them during a procedure that they need - something that is best for them. They are children and are not always capable of understanding the *why* right then and there. And that's okay. As the parent, we just need to remain calm and explain to them that we will take care of them and that they are safe and loved, and to hug them tight after it's over! One thing that has helped us is something called "Buzzy", suggested by an adult friend who herself had a very severe fear of needles - here is a link: http://buzzy4shots.com It's not magic but it does help my daughter. Hope you get things sorted soon!!
  14. Thank you so much for your response! And yes- it does help very much! My lab report did not say much other than "consider DQ2 and DQ8 testing to rule out celiac disease. We've done that in the past and she has at least one of those. So can I clarify that you had the *deamidated* gliadin igg test? I actually thought that this test was specifically for celiac disease and actually could not give information on gluten sensitivity or intolerance? From my understanding, it was the old gliadin igg test that did that? This is all so confusing and she doesn't have her GI appointment until December!! I hate the idea of needing to keep her on gluten that long if it is causing problems :/ One thing that I am really having trouble finding is information about interpreting results of these tests. I've found studies indicating that sometimes, blood tests alone can provide enough information for a diagnosis, when the deamidated gliadin test is used in combination with tissue transglutimase and endomysial abs, but what I'm not finding is if all of these tests need to come back positive together, or if just one of them needs to be positive. Maybe doing all tests together simply increase the likelihood of catching something, rather than needing to work in combination with each other for a diagnosis? Thanks to all reading. I would really appreciate feedback from anyone who might know more about this!
  15. Our pediatrician is not as familiar with these tests, (I specifically requested this one), so I'd like to ask here and I'm hoping you all will share your wisdom:) We've been through so much with digestive and growth issues with all of my kids (4 of them), and most celiac tests have been negative so far. Everyone does have at least one component of the genetic marker though. Anyway - here is the test result: Gliadin (Deamidated) AB (IGG) result: 21 H (reference range indicates anything over 20 = antibody detected) Tissue transglutaminase was negative, and I thought we requested an endomysial antibody, but that result is either not available yet or for some reason it wasn't done. IgA is within normal range. Some information I read indicates that a high deamidated gliadin alone almost unequivocally indicates celiac disease, and other information tells me it is not very specific and doesn't matter. Thoughts? Thank you so much for reading. I just want to know what is going on with my children