Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

basilicious

Advanced Members
  • Content Count

    92
  • Joined

  • Last visited

4 Followers

About basilicious

  • Rank
    Star Contributor

Profile Information

  • Gender
    Not Telling

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.


  1. Scientists are comparing them even as we type. B) It looks like the combo of DGP-IgG and TTG-IgA may be the best bet to help reduce false positives.

    http://www.ncbi.nlm.nih.gov/pubmed/20171961

    http://www.ncbi.nlm.nih.gov/pubmed/20042872

    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?


  2. 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. :blink:


  3. It would be refreshing to see a doctor out something as accurate and factual as correspondence in a record. Alas, what ones of a certain nature will do is our something potentially offensive or damaging such as "hypochondriac", or "hysterical", or "ignores advice", or "uncooperative".

    I told an urgent care doctor, who I saw last year about my DH (when we thought it may have gotten infected and my regular docs were unavailable) that steroids aren't an option, and if I take any more of them I'll end up in the hospital - which was and probably is true since my reaction got pretty severe and I was ordered OFF of them by my Derm and monitored by him daily because if the reaction. That turd, who literally wouldn't come near me because he thought I had MRSA, wrote that in quotes in my file - suggesting I was a nut job.

    He rx'ed an antibiotic, which I was allergic to. From across the room.

    Ridiculous! That is so insulting in every way. So sorry you had to go through that...


  4. 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"...


  5. 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! :lol: 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.


  6. 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!


  7. Thanks so much, Gemini. Your validation means a lot, because it really does feel odd fighting for something that you don't even want!

    I don't know how big of a deal it is if my doctor refuses a diagnosis, but at this point I just want her to know the information she is clearly lacking, for the sake of other patients. Then I will try to find a good doctor who is actually knowledgeable about this. I am so disillusioned now that I really don't want to see any doctors. However, it seems like there is some necessary follow-up associated with a formal celiac diagnosis (such as bone density testing and a note for gluten-free food in case of hospitalization) and I'm afraid of the potential risks of not having a definitive diagnosis. If anyone has any guidance about that too, I would be extremely interested. Again, thank you.


  8. Hello,

    Has anyone noticed an increase of acid reflux with gluten intolerance ? Also to help with the vitamin defiencies is a Pure Whey a good thing to utilize ? Also any idea how long you would take the Vitamin B & D replacements ???

    Have a good day.

    Bob B)

    Hi Bob,

    I am not a supplement guru, but I will comment on the acid reflux part of your question. In my own experience, and I've read others' accounts as well, low acid may be an issue. You know your situation best, but many people with low acid are put on acid blockers (because the symptoms of low acid are similar to those of too much acid), which can exacerbate digestive disequilibrium.

    That said, I've heard of two things that could help with too much acid: If you can handle almonds, I know several people who swear by eating a small handful before each meal. Also, if you can handle dairy, having a small glass of milk before bed may help. A celiac friend of mine who barely consumes dairy was doubtful of the milk at bedtime remedy suggested by her doctor, but it has made a huge difference.


  9. As some of you know, I was previously under the impression that my blood test results were mixed, with a high IgG and a negative IgA.

    Thanks to several of you on here, I realized that my blood test was positive for DGP IgG, which is accurate and highly specific to celiac. Based on this information, as well as the four out of five diagnosis method recently proposed (I was negative biopsy but have the DQ2 gene, have celiac symptoms and they resolve on a GFD) then that points to a celiac diagnosis. However, my gastroenterologist has been dismissive of my high IgG levels, and I believe it is because she thought it was anti-gliadin IgG, not DGP IgG. After coming to terms with this information myself, I finally wrote my doctor an email sharing the report recently published by Dr. Fasano and co. about the gluten spectrum. I quoted the following:

    On page 4, under "Clinical presentations and diagnosis", the second paragraph states the following:

    "Specific and sensitive serological tests are available as an initial test for celiac disease. Measurement of IgA antibodies to tTG (anti-tTG) is recommended for initial testing for celiac disease, while IgA anti-EMA is considered as a confirmatory test. More recently, deamidated gliadin peptides (DGP) antibodies (especially of the IgG class) have been introduced with sensitivity and specificity comparable to anti-tTG and anti-EMA, but with possibly a better performance in IgA-deficient subjects and in children younger than three years [22,23]."

    Now, I contacted the lab that did my test, and they even faxed me a sheet stating that the test I received is the DGP IgG. However, my Dr. responded as follows:

    "Thank you for the article. It has been well known for a long time that the most sensitive serologic test for the diagnosis of celiac sprue is anti-TTG IgA. However, as is mentioned in the very sentence you quoted, that when a person is IgA deficient or in children, this is not the best test and the deamidated anti-gliadin test may be the only test feasible. That being said, it is the newer generation of deamidated anti-gliadin IgG testing that is better and that is not what they use in commercial labs. Moreover, for adults who are not IgA deficient, it is not the most sensitive or specific test. It may be positive in many other conditions including an allergy which is not the same as celiac sprue. All this said, we will never know the answer to the question of whether or not you have celiac sprue, b/c you were on a gluten free diet when you were tested. I


  10. Hi! I am a 21 year old female and I weigh 125 pounds and am 5 feet 8 inches tall and have been gluten free for 7 months. I have noticed recently that my abdomen, only bellow my belly button, will swell up during the day. In the morning, right after I wake up, my stomach will be totally flat. When I eat my first meal, and then continue to eat through out the day I will get a small bulge bellow my belly button. I have tried looking up what it could be, but have not found anything convincing. I was wondering if anyone one has experienced the same thing, or if you may know what it could be?

    Thanks!

    I would suggest keeping a food diary if you aren't already. Have you changed anything in your diet lately? If you drink coffee or another caffeinated beverage in the morning, have you changed how much you consume? Also, you may want to try drinking more water, especially first thing. Hope this helps.


  11. Everyone's sensitivity differs. It may be a CYA statement, but of course there is the possibility of cross contamination, per your sensitivity level. Although, shared equipment is more of a concern than a shared facility.

    If you are newly diagnosed, all foods can be an issues for you gluten free or not. Healing takes time.

    I would recommend that you eat a clean diet for a month or two and then introduce specially foods one at a time.

    And, especially, don't anticipate a problem until it is one. B) We have too much to worry about ordinarily. B)

    Thanks, Lisa. Yeah, pardon my little pity party. I really love pistachios and thought that I was making a wise choice by eating a nut.

    Anticipating problems used to be a strength of mine, but I'm determined to give that tactic a rest. ;)


  12. Hi all,

    Just curious if anyone has any experience with Whole Foods' 365 brand pre-packaged pistachios (they're in the shell).

    I am feeling the familiar gluten haze set in after snacking on them just a little while ago. The packaging has both a "No Gluten Ingredients" symbol and the warning that the nuts are processed in a facility that also processes wheat. Do you think it's just CYA, or do you think CC is the culprit? I am inclined to go with CC, but since I want to avoid unnecessarily limiting myself, I would love your input.

    If it's CC, then oh boy do I feel like I'm in for it. As a newly-diagnosed celiac, I am starting to understand why people say CC becomes more of an issue...oy vay. Talk about a moving target.


  13. I'm glad you got in to see the neuro.

    Regarding Celiac and neuro issues, as many here will tell you , they seem to be the last to go and first to come back.

    For me, in the beginning, they were triggered by gluten, sugar, and processed foods like flavored/colored chips (gluten-free but contained types of MSG). I'd suggest following your doctors suggestions, as well as the posters. You'll notice there's a lot in common.

    Also, you mentioned a low-grade fever. Those are common in autoimmune disease, especially multiple ai and during a "flare". I would assume your body is going through 100 changes right now, so expect the unexpected and breathe.

    Most of what's happening will make sense in retrospect, but that's not very comforting in the beginning, I know.

    Thanks, pricklypear. That's very interesting about the low-grade fever. My mom has Hashimoto's but when my doctor did thorough testing of my thyroid, all was quite normal. Some of the thyroid symptoms I was experiencing went away once gluten was eliminated, so perhaps I have dodged a bullet. Either way, your comment and those of the other posters are helping me shift perspectives...now that I've had the thrill of some symptoms resolving, guess I'd better buckle up since apparently I'm in for a bumpy ride!


  14. Those sound like scary symptoms. I hope you get some answers on Monday.

    I just wanted to say that the flashy vision thing reminds me of my ocular migraines. Is that the same thing as "silent" migraines? I was surprised as anyone to find out that ocular migraines are really migraines, but they don't always hurt. Mine start as a blurry spot in the center of my vision-- can't focus or read because the center is blurred out-- then it spreads in a ring formation out to the edges of my vision. The edge of the line is blurry/flashy. It makes me disoriented for hours afterward. There is more information online, with descriptions, etc. They normally don't last long (20-40 minutes, maybe?) but they leave you feeling disoriented and stressed. My GI doc said that they can be associated with celiac.

    Avalon, I had not previously experienced that vision ring you mentioned, as when I wrote the original post I was having more of a vertigo issue. However, hearing about this issue was a lifesaver, because last week I had a migraine aura, which is exactly what you described and lasted about 25 minutes. It was extremely disorienting, and it would have been even worse if I had not read your comment. Thanks to your post, I was not as concerned about permanent vision loss etc, and then it gave me a thread to research once I was feeling better.

    Coincidentally, that was also when I was expecting to get my final results - EEG and VNG - so I called the neurologist's office and basically demanded a phone call from the acting neuro (while my dr is on maternity leave), since that is what my doctor had promised. The good news is that the EEG and VNG were normal, so I don't have nystagmus or other inner ear issues. When I asked the dr. about the migraine aura, she tried to put me off until my appointment - in mid-April! Unbelievable. I appealed to her anti-litigation side and told her I was concerned it might happen again while I was driving and that it would cause an accident. :) When I asked if there was anything I could do to prevent this, she promptly told me that I could begin supplementing with 200mg of riboflavin daily.

    Then, I was actually able to get in to see the acting neuro yesterday - she put me on the cancellation list, and I scored! My expectations were low since she was not communicative over the phone, but the appointment went well, and she seemed pretty knowledgeable about neurological issues from gluten. After a review of everything she said she thinks that what I'm experiencing is neuro toxicity from the gluten. She wants to determine for sure whether there's nerve damage, though, so I'll have an EMG next week. The cyst is not attached to anything, so it appears to have a slim chance of contributing to my symptoms. They'll continue to monitor it annually or if I get new symptoms. The doctor drew my thiamine, B12 and folate levels, so hopefully that will offer some baseline (though I have been supplementing 1 mcg of B12 and had just begun supplementing thiamine - hopefully it will still be somewhat accurate). Will check in again with those results, but thank you everyone for chiming in about your experiences. It is easier to weather the ups and downs knowing that this is part of the healing process, rather than worrying constantly about new, unsettling symptoms. I am getting better at avoiding cc - my husband is not gluten-free, but we have done a better job of organizing our kitchen and cooking practices - so hopefully I can just continue getting the gluten out without letting more in!

    Someone had asked about the VNG test, so although that makes for a longer post, here's a quick overview:

    -During the test, you wear some high-tech goggles that have a cover. Depending on the part of the test, the cover is down or up, but either way, the glasses use infrared technology to record eye movement and electrical activity.

    -The test has three parts: 1) following flashing lights along a light bar 2) lying down and going through various motions (getting up, turning, etc) 3) air being pumped into your ear, first warm air and then cold air.

    -The test intentionally gets you dizzy, so the whole thing is no fun, but the first two parts were relatively simple.

    -The third part is extremely difficult to get through, as the air gun/blower is actually making direct, extended contact with the part of your ear that makes you feel dizzy. They put the air pump in my right ear first, let it make contact with my ear for a full minute - it feels like 5 minutes! - and then they record your eyes for an additional 2 minutes after the air pump is taken out. That is much-needed recovery time. Then it's repeated on the left ear. Then they repeat that process with cold air. Many people cannot handle the third part at all and opt not to do it. That day, the tech told me that 2 out of the 3 people who he had seen that day had opted out. It's a personal decision based on how you feel. I was able to do the warm air portion in both ears (which was necessary for that part to count), but then I opted out of doing the cold air portion. It didn't seem like they would get much more data out of it, and I had to function once I got back to work!

    Hope this information is helpful for those who may have to get it. There are some scary complaints about it online, but being in the celiac crowd makes us all a bit tougher. :)


  15. Hi mom2will, that sounds somewhat similar to my blood test experience. Has your daughter been eating gluten? That could help explain things. You mentioned that your son has celiac, so maybe you have changed your daughter's diet too?

    I went very gluten-light prior to my blood tests -- stupidly, perhaps, but I was feeling so much better that I couldn't bring myself to eat much gluten. About a month and a half into the gluten-light diet, I had my blood tests, and at that time the only positive value was my DGP IgG, which was 72 with a normal reference range of 0-25. My biopsy was also negative, but on a puny gluten challenge, so I don't think it means much. Personally, I interpret it to mean that I was either lucky and caught this early or that I began to heal pretty rapidly. Since your daughter is school-age, it seems a bit more important for her to get an accurate biopsy reading and definitive diagnosis if she in fact has celiac. I would suggest double-checking that she is getting enough gluten in her diet. Then perhaps consider re-testing her blood in a few months if you think that she was not eating enough gluten leading up to the panel. If she has been getting plenty of gluten, then well...perhaps it is too early for a proper diagnosis. I don't know. But keep in mind that 20-30% of celiacs test negative in their blood work.


  16. The dinner went really well. I brought the enzymes with me, which in itself helped ease my mind on some level. However, I didn't end up taking them, because my friends went to pretty remarkable lengths to keep things safe for me. I felt so grateful that I could relax and have a nice time! However, since this is probably a fairly unusual experience, I may opt to use them in the future, since at least it sounds like they couldn't hurt. I need to do more research on the forum regarding what to eat/do when glutened, because maybe I'll make a practice of eating some of those foods or doing whatever is recommended if only as a precautionary follow-up step.

    Thanks for your responses. I wish I had thought to post my question sooner!


  17. I have just gone strictly gluten-free and am eating dinner at my friend's house tonight. She has been so incredibly accommodating and has checked labels, run things through the dishwasher and seems very aware of cross-contamination issues; however, as we all know, the best-intentioned friends may still inadvertently gluten us.

    I have not tried gluten digestive enzymes and realize they are not in any way a shortcut for us. That said, since I am scared that I may get some gluten in my system tonight, could taking the gluten digestive enzymes help reduce any possible fallout?

    Also, any recommendations on the appropriate dosage? The bottle says 1 capsule, which is 100 mg of "BioCore DPP IV" - Protease Aspergillus oryzae) and Protease AM (from Aspergillus melleus).

    Thank you!


  18. Hi xJalin,

    Welcome to the forum. I'm so sorry to hear about your symptoms, and as someone whose gluten intolerance has caused speech disturbances, I can tell you that, at least broadly, gluten problems can cause speech troubles. It certainly causes brain fog as well. That said, you really need to begin the process of being evaluated by a doctor...

    You need to go to your general practitioner and ask for the celiac panel blood test - see the specific tests below - and continue to eat gluten until the testing is over. You need gluten in your system to get accurate results. That is really tough and is a personal decision, but it is key if you want a definitive diagnosis. Also, it will be helpful when evaluating for associated conditions.

    Tests to get:

    Anti-Gliadin (AGA) IgA

    Anti-Gliadin (AGA) IgG

    Anti-Endomysial (EMA) IgA

    Anti-Tissue Transglutaminase (tTG) IgA

    Deamidated Gliadin Peptide (DGP) IgA and IgG

    Total Serum IgA

    Also, keep a food log and try to identify any possible triggers - food, environmental, social - for both your physical and verbal symptoms. And perhaps most important, try to cultivate self-compassion; dealing with the anxiety caused by any health problem is a challenge, so make sure you are in your own corner!

    I have to make this comment fast due to time constraints, but please keep us posted! Good luck.


  19. I'm finally in the process of purging my cabinets of all gluten, and I noticed that Safeway's O Organics pasta sauce contains "organic spices". I can't find specific information on Safeway's site, but online comments point to Safeway's canned beans, veggies and sauces being safe. I plan to contact their customer service line tomorrow, but does anyone have any experience with this sauce? The devil is in the details when dealing with "natural favors" and "spices"...

    Thanks!


  20. Hi Liz, I would add that too little stomach acid can contribute to having undigested food in stools. Now, certainly if you have a gluten issue then it's clear that it's throwing off your digestive enzymes and process - but just be aware that that could be a separate but related issue. In fact, a lot of people are diagnosed with too much acid when in fact they have too little, since the symptoms can be the same.

    Depending on your symptoms, as you try to promote healing, you may want to consider natural ways to boost stomach acid; some people swear by vinegar (not sure exactly how they do it, but they swallow some small amount of vinegar before eating I believe). Not sure if you drink alcohol, but a glass of wine with dinner also helps with that (but other alcohols are not shown to offer the same beneficial acidic effect.) Good luck!


  21. Fiddle-Faddle,

    Thank you so much for sharing your experience with me! I am positive that I have low acid, so that may be contributing to this. I switched to a sublingual B-12 supplement but will check whether it is the kind you mentioned. Also, I definitely have a little eye twitching and involuntary movement - feels like my eyes have ADD but my brain doesn't (but that it will if my eyes keep it up; it's very distracting).

    I have also been wondering if there is something viral going on, as I've been running a low-grade fever off and on for a few months...and since I am a desk worker, I have also been paying more attention to posture to hopefully avoid mechanical issues that you described. It is incredible how all this comes together. I am quite nervous because the cyst sounds like it is close to my cerebellum, and apparently nystagmus can be caused by cerebellar problems. I am not going to jump to conclusions, though - the remaining portion of my VNG should confirm whether my eye issues are actually nystagmus - but at least I will now be armed with a question about that when I have my appointment. Nystagmus can also be caused by a thiamine deficiency, and I JUST began taking fat-soluble thiamine this week because my mom read that it is extremely helpful in treating neuropathy...hopefully that will help, and I will definitely ask my doctor about supplements.

    This information is so helpful, because I have been feeling so much better off gluten but have had these odd neurological and ear symptoms...working through the layers of your personal physiology is so complex. I'm relieved to know I'm not the only one who's dealt with this array of symptoms.