Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 FREE Celiac.com 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 Celiac.com Store.

basilicious

Advanced Members
  • Content count

    92
  • Joined

  • Last visited

Community Reputation

1 Neutral

4 Followers

About basilicious

  • Rank
    Advanced Community Member

Profile Information

  • Gender
    Not Telling
  1. Thanks, Phyller. Your comment is dead on actually. My neurological symptoms have generally dominated, so perhaps I have not been as tuned in to some of the digestive symptoms, or just had not taken them as seriously because the gut somehow felt less important than the brain...so silly in hindsight since they are so clearly interrelated. Anyway, after reading others' comments about lactose intolerance during the healing phase, I stopped having greek yogurt for breakfast every morning, and that has definitely made a positive difference. When I tried reintroducing it, the bloating returned and my energy plummeted. Eggs are on the breakfast menu for the foreseeable future! I have had this notion that I caught my celiac in its earlier stage, and that the intestinal damage may not be too bad, but honestly, that may just be some lingering denial. I think I've been healing pretty rapidly all things considered, but the lactose intolerance suggests that things were a bit worse than I had hoped...a little disheartening, but I am on the right track now. Thanks again for sharing your experience.
  2. This is great information, Skylark. Thank you. Omega-3s are even more integral to regeneration than I realized! And I will follow your other advice too re: blood sugar and the fats ratio. Maybe I'll start hardboiling a half dozen eggs each week and having them on hand as a good quick breakfast and/or snack. Bubba's Mom, thanks for this guidance about the food log and the fats. I'll make a more concerted effort to log everything. Also, just bought some coconut oil and am looking forward to using it! You had me at "Feeds the brain." Thanks again to you both for sharing this info and your experiences!! This forum is such a boon to recovery, and I am so grateful for it.
  3. Funny you should ask; the last two days I have had some tingling on the tip of my tongue shortly after eating. It lasts for about two hours. Yesterday it was after eating eggs and greek yogurt for breakfast. The day before, I'm not sure what caused it, because I was eating things (popcorn, quinoa pilaf with mushrooms/broccoli/onions) that I have eaten since then without an issue. I have not been disciplined about keeping a food journal, but with this new tingling it's probably a good idea.
  4. I was recently DX'd (positive DGP-IgG but biopsy negative) and have experienced a number of neurological symptoms, including some that emerged 2-3 weeks after becoming celiac-safe with my GFD (which was about a month and a half after going strictly gluten-free but still being a little exposed to cc). To rule out MS and some other things, I have been going through some follow-up testing, and so far everything, including the EMG that tested for nerve damage, has been normal. My neuro said that she thinks my symptoms, some of which have or are slowly resolving but which have really run the gamut (tingling, ear fullness, migraines, anxiety, blurry vision, lack of mental focus, jumpiness in my hands and feet, etc...), are due to neurotoxicity, not nerve damage. They did some additional vitamin testing, and my folate, B12 and thiamine were all normal. Vitamin B1 (Thiamine), plasma: 39 (ref range: 9-44 nmol/L) Mathylmalonic acid, serum: 163 (ref range: 87-318 nmol/L) Vitamin B12, serum: 492 (ref range: 200-1100 pg/mL) Folate, serum: >24.0 (ref range: >5.4 ng/mL) (I had taken my daily vitamins, which included B supplements, about an hour and a half before they drew blood, but the doctor said that would not skew the results.) So my question is this: Although I'm thankful not to have vitamin deficiencies or apparent nerve damage, neurotoxicity still sounds fairly ominous, so what can I do to feel better? My energy levels are still really in flux, and my afternoon slumps can be pretty bad. Neurotoxicity seems like such a broad term, and in the context of gluten, it's unclear whether it is more temporary and related to residual gluten in the system, or if it is more permanent. My current course of action is to foster general wellness: take supplements at reasonably low doses to support regeneration, eat whole foods, get a reasonable amount of exercise and try to be patient. But, if anyone has any more specific guidance about neurotoxicity, I'd really appreciate it. It's hard to know whether I am doing enough and/or have realistic expectations. Thanks!!
  5. IrishHeart, I am going through that wild gear shift right now. Good to know it's not just me. Before I pinpointed my gluten issues, I felt like a hummingbird -- plenty of energy, but increasingly nervous, and had unexplained insomnia; now post-gluten, I've been weighed down by some unexplained fatigue, but it varies. Some days I feel like my old self, but other days it takes a lot of effort to do the basics. Afternoon slumps have definitely been much worse. They tested my B12, folate and thiamine levels last week; B12 was normal but they'll let me know the values and other results tomorrow. Wonder if folate will be low... I don't need to feel like a hummingbird again, but I'd like to avoid feeling like a sloth. (Though at least they do seem happy.)
  6. Thank you for taking the time to share these excerpts, Skylark! My alumni access to online research can be a bit testy. This makes a lot more sense. While I've been focused on the false positive angle, I realize the more important issue from a broader testing perspective is how sensitive IgG DGP is and whether it will detect celiac at various stages. Alone, IgG DGP satisfies the former but possibly not the latter. This sounds like a major advance in that, between IgG DGP and TTG-IgA, there is not only strong sensitivity but also the ability to detect celiac over time, including early on. Let's hope they soon develop a diagnostic timeline that fully maps out the testing required to effectively detect celiac at all stages...but maybe they're already there with this combo.
  7. Skylark, as usual, you are able to school me! I will have to find the full text of these online. Not trying to be thick-headed here, but since this points to a combo of DGP-IgG and TTG IgA, then what about the folks (like me) who are positive for DGP IgG but not TTG IgA? Isn't the chance of a false positive extremely slim? Are you aware of anything else besides celiac that could cause a high DGP IgG? (For example, my GI doctor said it could be related to a wheat allergy, which seems far-fetched, but what do I know...) Related to this...is it true that testing DGP IgG could detect celiac earlier than some of the other antibodies tests? So should I feel confident in my results and feel fortunate to have possibly caught this at an earlier stage?
  8. I apologize if this is something I should have already figured out in my research, but my annoyance with the diagnostic process is clouding my thinking at the moment... If the DGP IgG test is so accurate and so specific to celiac (which I realize it is), then why would we need any other blood tests? Why are people still getting full celiac panels for the wide array of antibodies? Why are biopsies still being used to confirm diagnosis? Are there ever false positives or other underlying reasons for the DGP IgG test? What constitutes sufficient "proof" of celiac? Although it's clearly useful to try to size up damage and rule out other conditions, can't that be a next step after a celiac diagnosis? I am genuinely trying to understand if I'm missing something or if it truly just boils down to the medical field only diagnosing advanced celiac! I keep seeing how DGP IgG is so great at diagnosing celiac when someone is low in total IgA or is very young, but I don't understand why it would be limited to that group. If it's good, it's good, and shouldn't everyone use it? Sorry for so many questions...thanks for humoring me.
  9. Ridiculous! That is so insulting in every way. So sorry you had to go through that...
  10. Bubba's Mom, I paused when I read that part of her note that indicated we could "presume" I have it...but I really think she meant that I would just do the diet and not get a diagnosis. As for how this exchange impacts my medical records, well you make an interesting point. I have tried to ensure that my notes are direct and respectful, so hopefully an objective doctor would see that I'm simply trying to have a fact-based discussion. I have really tried to avoid a confrontational tone. By the same token, I think it's important to document it if a doctor ignores the scientific evidence you share with them, and if she chooses or is obligated to put these emails in my file, then she will also be thoroughly documenting some glaring mistakes on her part. I'm really sorry to hear that you had a bad doctor for your second opinion. And sometimes it probably just isn't worth the trouble of "writing the letter"...
  11. Haha, I don't know mommida... this doc probably thinks the strep test isn't commercially available!
  12. A quick update: While I still had the courage (but after the steam stopped coming out of my ears!), I replied to my doctor and respectfully pointed out her inaccuracies and inconsistencies regarding the IgG testing and gluten challenge guidance. I also asked for a diagnosis based on the research. She replied really early this morning and had changed her tune. She apologized for one of her inaccuracies, ignored the others but said that "probably the next best step is for you to have a second opinion from a true expert in the field." Well duh! She recommended going to University of Maryland's celiac center or to Peter Green at Columbia and said that she would facilitate the sharing of my records. Since I'm in DC, I will look into the U of MD option and go from there. Since so many have fought such horrible ignorance and arrogance on the part of their doctors, I am happy to at least see a doctor admit when she is out of her depth.
  13. Being new to this diagnosis as well, I can say that while there is an initial thrill associated with some symptoms resolving, there have been some unexpected symptoms too. There are ups and downs... For example, my bloating has improved pretty steadily, but I began experiencing night sweats (for the first time in my life) pretty consistently for the two weeks or so after I went strictly gluten-free. Dreams returned in an incredibly vivid way, so much so that I had to wonder what my poor brain was working through! Also, a lot of my brain fog lifted fairly quickly, but then I began experiencing new, really unsettling neurological symptoms like lightheadedness, vertigo and ear fullness, and I've had a continuation of some mild speech disturbances. My theory is that, in addition to my body healing, it is already getting more sensitive to gluten, and since I've still been moving along the learning curve, I think I was getting some cc. However, ever since I made some additional adjustments in our kitchen - like creating better systems for how my husband prepares his gluten lunches and does the accompanying dishes - I have noticed an additional improvement. So, maybe that is my longwinded way of saying that ups and downs are normal, but also use this as an opportunity to identify any cc you may be experiencing. Good luck!
  14. To answer your genetic testing question: Yes, Quest is good. They test for both the alpha and beta subunits of the HLA sequence in question. This link may be helpful http://legacy.questdiagnostics.com/brand/business/hla_immu_gen/faq.html#celiacMy link
  15. I was surprised about the milk suggestion too, but hey, if it works! And a milkshake is even better!