Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • 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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About gratefulmom

  • Rank
    New Community Member
  1. Hi Stephanie! Yes, when I read the your post (Gemini sent a link to a previous conversation), I felt an instant connection, as we are in a similar situation.  How did things go at your visit with Fasano?  Do you have any new info., or are you waiting?  How frustrating!  Yes, my daughter did have a positive biopsy 2 1/2 years ago.  She was at a Marsh 3B, which I understand to be fairly severe.  The celiac specialist said we should wait until next summer to do another biopsy.  It seems that, since our doc is considered to be a celiac expert, maybe we should really just follow his recommendation and wait a year before going crazy pursuing other avenues.  I do plan to really revisit all of our food and products to see if I'm missing something.  Are there many other folks on this forum that have similar issues, or is this situation a bit unusual? I didn't find a lot other than you and the others that responded to this post who have this concern.  Please keep me posted on your results with Fasano.  I'm super curious and interested!  Nice "meeting" you, and I appreciate your feedback, as well as the other amazing comments I have received!  I definitely have some things to think about and pursue! 
  2. She does have a celiac specialist at the Children's Hospital, and I think he's considered to be a celiac expert.  He did test my daughter for the B levels (at my request), and those levels were thankfully fine!  Her vitamin D was very low last year, but that's gone up (she's now in the low normal range).  Her thyroid stim. hormone level was in the normal range. We will definitely spend some time looking into the AI possibilites.  Thanks for pointing me in that direction!
  3. Okay.... I hope this response goes out to everyone who's replied to my post!  I'm still trying to dial in how this conversation thread works!  I reread the article, and I've also read your responses.  I can't tell you how much I appreciate you sharing what you've learned, as it's clear that you are passionate about your researching and sharing of the subject.    Here's my "plan" for the moment...  1. We are going to ramp up our level of concern with our gluten-free products to further eliminate the possibility by cross contamination and do some (not all, yet) of the diet listed in Table I of the study.  Even though we feel we are super careful with our gluten-free foods, I think we'll no longer rely on the gluten-free labeling per se, and instead stick with only gluten-free foods made in a dedicated gluten-free facility (such as Schar's and Glutino).  I need to look more closely at foods that we think are gluten-free, and double-check their status (such as Minute Maid OJ, Welch's grape juice, spices, etc.).  We may still be missing something. 2. I will start researching related autoimmune diseases.  My daughter doesn't have symptoms of some of these AI diseases (no symptoms of Hashi's, for instance, although my little brother had thyroid cancer at age 19...not sure if that's something to consider), but I need to do further study on colitis and some of the others. 3. When school starts, we're gonna have to make a bigger fuss about surface cleanliness.  This might be a major source of cross contamination.  For instance, they do wipe down the tables at lunch, but are the rags full of gluten crumbs?  If so, maybe they're just smearing the crumbs around. I've tried to get my daughter to make sure her food isn't touching the table, but how can I be sure when I'm not there?  I need to have a teacher make sure she's washing her hands before her lunch and snacks, and I need to make sure she puts her food on a clean tray.  She doesn't want to be singled out and feel different, but if she doesn't do this, I may not let her eat in the cafeteria anymore with the other kids.  That would be a big bummer! 4. We need to keep a food journal, which will include every food AND any possible reactions.  Her reactions are not "obvious" (not gastrointestinal), and we're trying to determine if some of her behaviors (what seem to be blood sugar spikes) are gluten exposures or just too many carbs and sugars without proteins to stabilize her blood sugar levels.  BTW, the dietician feels strongly that she doesn't have diabetes.  Most of her symptoms are neurological (sensory, etc... that's another long story...), so we'll monitor those closely. 5. Look more deeply into the casein question.  Our dietician didn't want her to stop consuming dairy, but I've read recently that the protein in milk can mimic gluten protein.  Not sure if this is substantiated, but need to look into it.   If, at our next appointment (which is not until next June!) we don't see a marked improvement, I think our doctor wants to do another biopsy.  I think that, at that point, if she still has damage and we've corrected all possible sources of cross contamination, that's perhaps when we shoud pursue more testing/second opinon/etc.   Any suggestions?  Don't want to be remiss in waiting too long, but don't want to be paranoid and start demanding tests and flying around the country for other opinions.  My daughter has improved greatly, but we need to get this completely figure out.   Thanks again SO MUCH for your time and thoughts!!!
  4. Thanks so much.  I will definitely go to Stephanie's link.  Looks like I need to dig a little deeper with checking out the AI possibilities.  I feel guilty getting a second opinion, but we may go that route soon.  I appreciate all of your feedback.  It's super helpful!!!
  5. I just read through this study, and I plan to read it again and try to really get my brain around what it's saying.  I just looked up "refractory celiac disease."  How long would a person be on a strict gluten-free diet with the body not responding before the person is classified as having this refractory version of celiac?  Sounds like my daughter fits into this category.  The course of action suggested in this study seems like what we should do at this point.  My daughter doesn't eat out, and I feel that I am super careful, but now I feel that I need to just ditch all processed products that are labeled gluten-free, as this is likely the culprit.  The study says the participants eliminated all foods that might even possibly be cross contaminated, and the only grain they ate was rice.  Now I am wondering about foods such as quinoa, block cheese, and certified gluten-free products such as Udi's pizza crusts.  Pleeeease tell me that we can keep eating those products!  Do you have a recommendation of where I can find a list of foods that are potentially cross-contaminated?  Thanks so much for sharing this research study!
  6. Okay then.  Thanks so much for pointing me in that direction.  Not thrilled about the thought of it, but we need to get to the bottom of it.  Thanks for the reply!
  7. Does DGP mean Deaminated Gliadin?  Her IgA Gliadin has gone from 110.6 down to 15 so that's now negative (yay!), and her IgG Gliadin has gone from a 46.8 down to 17.9, which is negative, too (yahoo!).  For both the IgA and IgG, less than 20 is considered negative, 20-30 is a weak positive, and 30+ is a strong positive.  What you're saying coincides with what my dietician told me.  She said the gliadins would be up with random exposures, but not the TTG.  So...maybe it's true that we're pretty dialed in with the gluten-free diet and it could be something else.  Hmmmm.....  Thanks!
  8. I am new to this forum, and can't figure out how to find StephanieL's posts.  When I put her name in the search bar, I can find threads where she's made comments.  Do you know the title of her thread on which she's discussing her situation with the high TTG levels?  Thanks!
  9. Karen, that is a good question to ask.  We are certain that she is not sneaking it.  My husband was actually her math/science teacher, so he was able to supervise the eating situation at school fairly well.  She doesn't eat out at restaurants, with the exception of one dedicated gluten-free restaurant that we go to when we make it to the city.  When she goes to friends' homes, I always pack a cooler with food and a cutting board, and the moms of her few pals all know the very long, overboring list of what she can and cannot eat.  I do wonder about surfaces at school, though.  As much as we tell her to wash her hands and that surfaces need to be cleaned, who really knows for sure how clean those tables and desks are getting!  That's really the only thing I can identify as a possible culprit.  I am also a teacher in her school, so of course all of the staff know about the situation (and I'm sure they're sick of hearing about it!). Our dietician says that a TTG level of 47 after being gluten-free for 2 1/2 years wouldn't be a small, periodic exposure.  She says it's ongoing and substantial.  I am racking my brain over spices and products that are labeled gluten-free but may not be... Ugg...  Thanks for the suggestion.  Wish it was something simple and obvious like that!!!  We'll keep plugging along trying to figure it out.  Thanks again!
  10. I will definitely look up Stephanie's posts.  I am just trying to figure out if I'm being paranoid, or if this is still a big concern!  It will be extremely helpful to compare notes with someone who's going through a similar situation.  Many of my daughter's symptoms are gone, although her symptoms were (and are) more neurological than gastrointestinal.  Although she did have an issue with random vomiting, that was about it in regard to her gastrointestinal symptoms.  It did, however, seem like she had no immune system whatsoever.  Now, when she gets sick, she actually gets well again!  I do feel like I need to look into the neurological ramifications of Celiac, as this has been our bigger concern.  That's all a long story.  Maybe those questions will be asked on some other thread.  This Celiac thing just has so very many layers!  It's exhausting!  Gotta figure it out, though, cause I love my daughter!  Thanks again, and I'll look for StephanieL's posts!
  11. Thanks so much for your reply!  I will look more carefully into her liver test levels.  I am wondering why our gastroenterologist is not more concerned.  I'm also curious what a typical TTG level is for a 9 year old who's been on a gluten-free diet for years.  How concerning is a TTG level of 47 in a child of this age?  Do you think this could be a false positive?    Thanks again!
  12. My daughter was diagnosed with Celiac 2 1/2 years ago.  At that time her IgA TTG level was 149.6, and deaminated gliadin levels were quite high as well (110 and 47).  Since then, her levels have been coming down gradually, but her TTG level is still in the "strong positive" range (it's now at 41.7).  We do not do any gluten cooking in our kitchen, I've cleaned out our cupboards, gotten new gluten-free colanders and cutting boards, and basically purged my kitchen of gluten products.  I'm hyper-vigilant with what my daughter eats and what foods are in our home, as well as all personal care products (sunscreen, lotion, shampoo/conditioner, soap, etc.), and her level will just not come down!  Our registered dietician, who is known in our state to be one of the leading experts on Celiac, has discussed this at length with me, and she cannot find where we are slipping up.  She says that this high of TTG would only be a result of regular, prolonged gluten exposure.  She says that either her exposure is coming from outside the home (can't figure that out, either), or that my daughter might possibly have a different auto-immune disease that is keeping her levels from coming down.  After doing some internet research, I found a page from the University of Chicago Celiac Disease Center that discusses possible causes of continued high TTG level on a gluten-free diet. They suggest that a high TTG on a gluten-free diet can indicate chronic liver disease, Type 1 diabetes, Chron's disease, and thyroiditis.  Here's the link: .  Our gastroenterologist says that there is conflicting research on this topic, and he feels that nothing else could be causing my daughter's TTG levels to remain high other than gluten exposure.  My dietician disagrees, and wants me to contact one of the leading experts (Dr. A. Fasano, Dr. Joseph Murray, or Dr. Peter Green) to check into this question.  Our gastroenterologist (who is considered a celiac expert, as well) told us we could get a biopsy to see if her gut is indeed healing in spite of the high level, but we all mutually decided to wait a year.  So.  Do we just ignore it all and wait another entire year, or is there something else we should be doing?  If my girl has some other auto-immune disease, I'd like to get it dealt with sooner rather than later.  One more piece of information that might be helpful is that her GOT/AST,S and GPT/APT,S (on her hepatic function panel) were somewhat high.  Not sure who to believe and what to do at this point!  Thanks in advance for any advice or suggestions!