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researchmomma last won the day on February 14 2012

researchmomma had the most liked content!

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  1. I am at work and supposed to be working but I love soups and this is a favorite so I had to post.

    Chicken Tortilla Soup with Lime


    I do make some changes though:

    I don't use water, I use all gluten-free chicken broth (I use Better Than Bouillon cuz it is so good) in place of chicken broth and water

    I saute the onions, garlic and cumin before added the liquid

    I add black beans when all done (but rinse em first!)

    I don't make my own tortilla chips cuz I am lazy (I get gluten free ones from our local mexcian place)

    Serve with sour cream, cilantro (coriander for you Europeans), green onion tops, cheddar cheese and tortilla chips.

    So I started with the epicurios recipe and changed it up a bit. It is super easy and really good.

    It is a crowd pleaser and is my tradition SuperBowl meal. My kids love it too

  2. If you're doing genetics LabCorp reports alpha and beta and all alleles on dq2, 8.

    Good to know. As soon as I hear back from HR, I will decide if I a going to wait for the LabCorp coverage. This is for me. My Mom, Sister and I are all very curious. My sister has been plague with IBS and Endometriosis all her life and is scheduled to see the GI in Feb. I told her to get screened for Celiac based on my grandmother's history. It will be an interesting first quarter of 2012. Regardless I think we all are gluten intolerant and so does my Mom.

    Thanks for the help! You just have to wonder why it is so difficult.

    I will give some props to my general doc. I called about the Celiac panel and they said "you can order whatever test you want as long as you have been seen by the physician in the last 12 months. Just come on in".

    How refreshing!

  3. Quest:

    Celiac Panel Method

    This panel includes a test for tTG IgA antibodies (enzyme-linked immunosorbent assay [ELISA]) and total IgA concentration (immunoturbidometry). When the tTG IgA test is positive, an EMA IgA antibody test is performed (immunofluorescence assay); if positive, the EMA titer will be determined and reported. If the IgA concentration is low, a tTG IgG antibody test will be performed (ELISA). There is an additional charge, associated with an additional CPT code, for the latter 3 tests (EMA IgA, EMA titer, and tTG IgG).


    Celiac Disease Complete Profile

    Test Includes: Deamidated gliadin IgA; deamidated gliadin IgG; tissue transglutaminase IgA; tissue transglutaminase IgG; serum IgA quantitation

    Celiac Disease Comprehensive Antibody Profile

    Test Includes: Deamidated gliadin antibodies; endomysial antibodies; tissue transglutaminase (tTG) antibodies; total IgA

    Celiac Disease Profile II

    Immunoglobulin A; endomysial antibody IgA; tissue transglutaminase, IgA; tissue transglutaminase, IgG

    Labcorp looks better to me. They do deamidated gliadin as well as the older tests. If I were getting tested I'd really want deamidated gliadin.

    Yes, and it isn't "reflexive" They run them all so you can look at the results as one whereas Quest only runs the tTg IgG if the total IgA is too low.

    Thanks for helping me walk through this. I would love to have my daughter get a labcorp test while eating gluten. Just to see.

  4. My answer is that I don't know.

    My celiac panel was done by Quest and it was highly positive. This was the older panel and Quest is the lab my local small town hospital uses.

    My daughter in Denver uses LabCorp and had the newer DGP test. Highly positive also.

    Surprisingly our results were both off-the-map positive and very similar, in fact. I do know that the DGP is newer and supposedly better.

    Edit: How long will it be until you get coverage for LabCorp? That would probably influence my decision.

    Thanks Sylvia, your edit is my dilemma. I have asked HR to let me know. If they say weeks, I won't make it.

  5. I was told that I could not have celiac and that my genes were negative (which they aren't), fast forward 2 years of increasing sickness and pain. And basically now I will never get a diagnosis but a celiac specialist here says that there is no way it could be anything else, he is certain I have celiac. Doh - stupid Drs, Stupid tests!!!

    Beebs who told you that you didn't have the genes and how did you find out you did? Thanks!

  6. Did they run the ttg IgA or the ttg IgG?

    About the total IgA, which I guess you are asking about, I really do not know if that goes up and down, or up and down dependent on food intake.

    But a lowish total IgA (low but still within range) can skew the ttg IgA test, or any kind of IgA based test since those tests are dependent on IgA.

    Usually they only take the low total IgA into consideration regarding IgA based tests if the total IgA is well below range.

    But it can still skew the results even still within range.

    Thanks Nora.

    They ran a ttg IgG because the IgA total was well below normal. The doc said that since the ttg IgG was normal she didn't have Celiac.

    They did a gene test, she doesn't carrry either DQ2 or 8.

    I am doing the enterolab regardless at this point. However, my daughter is really stuck on getting the endoscopy since the endocrinologist mentioned it. I think it will come back pretty and pink and i just want her off gluten. It has a very negative effect on her, Celiac or not. I told her if don't hear from the doctors by tomorrow about a scope, we are going gluten free and staying that way. She is just miserable. I am selling this as a 6 month trial to her but I have a feeling she will not come off until she leaves the house. Then it is up to her.

  7. Let me add something that is very helpful that one of the moderators here suggested. Make a list of your kid's medical issues (physical and emotional) and cross them off as they disappear on a GFD. We did and my husband (who is a skeptic) was really shocked by what went away after just two weeks and what came back on a glutenous diet.

  8. I have a 12 yo who we are trying to get a diagnosis for. Doctors are very frustrating. However, we are going gluten free regardless as soon as the last test is ordered. We did a gluten free trial of two weeks and about 7 days in, I had a very sweet 12 year old who stopped fighting with her brother, listened to reason, did her chores without complaint and had less stomach aches. We were instructed to put her on gluten because she is small and has delayed puberty and the endocrinologist would like her scoped in order to prove to me that she needs to be on prilosec and to make me feel better by getting a negative biopsy for Celiac. :unsure: They want her on high dose prilosec but I am convinced that she is gluten intolerant. So to your question about anger: YES. My daughter is back to throwing major tantrums. She "spins in circles" when she is trying to discuss something (and is yelling). She recognizes this is gluten related. She told me last night that she really wants the biopsy (we will see if they grant it) and then she can't wait to go gluten free because she felt sooooo much better. So I say your anxiety and the angry outbursts are gluten related.

  9. I started to get a bit of spotting on dec 31st. had some bad cramping at 2am jan 2nd. went to the hospital later that morning and got some blood drawn. i am to go back tomorrow to have another blood test. i seem to bleed when going to the bathroom but otherwise i haven't been bleeding. i had slight cramping yesterday evening but not terrible. my pregnancy symptoms seem to be gone - my breasts are no longer sore, i don't seem as nauseous, but i still feel a little out of it. the blood is bright red. i think i am no longer pregnant. i won't know for sure until the end of the week. i'm extremely sad about this but realize that there is nothing i can do about it. just very sad.

    I am so sorry. It is horribly painful. Please take care of you.

  10. here is an abstract about DQ9 and celiac:


    just to show DQ2 and 8 are not the only gluten sensitive genes

    That is interesting and is from the year 2000. You would think they would be a bit more open minded, eh?

    Nora on another thread you mentioned if someone had low IgA that the testing from Enterolab for sensitivity wouldn't be useful since it is based on IgA. This makes sound sense. However, I have a question regarding food intake and total IgA levels.

    My daughters blood work was pulled by the hospital while she was being seen in the ER for suspected appendicitis. She was so sick and had not eaten for over a week or if she did eat, it was a few bites.

    Because her IgA was low (not insufficient) they ran the tTg test which was normal.

    My question is could her low food intake effect both of these tests? She was eating mostly fruit. And if yes, since her diet is much better now, could the IgA levels be better and make the enterolabs worth doing?

    Thanks in advance. Please post if you have an opinion on this. These tests are expensive and maybe I should just do the gene sequencing.

  11. thanks everyone! I'm definitely keeping these handy for superbowl too! :)

    Since you mentioned Super Bowl here is my fav and it is so easy:

    2 bricks of cream cheese

    1-2 cups of shredded sharp cheddar cheese

    1 cup of salsa

    Spread cream cheese on bottom of shallow bowl or serving dish (has to have a lip)

    spoon salsa over cream cheese

    cover with cheddar cheese

    Microwave until cheese is melted.

    Serve with corn tortilla chips (we like Tostitos Scoops).

    Sounds dull but it isn't and I always get asked for the recipe.

  12. If you can afford it maybe test the whole family. When I tested with them you didn't have to get all the tests. You could choose one or two. Maybe get your DD's full testing done and do just the gluten tests for the other little one might be an option.

    I do hope you are able to get some answers and that everyone is doing better soon.

    Thank you. There have been many of you that have been so helpful. I think I would be certifiably insane without the help, support and advice.

    Good idea on the testing. It will be interesting to see how J turns out on Enterolab. She will probably be double DQ4 with my luck! :P

  13. I hope you can convince your husband to test him and then go gluten free for a while to see if it helps no matter the results. I would have given anything to be able to run as a child. Heck I'd give anything to be able to run now. If the diet can give your DS the chance of being able to run and play it is worth a shot. Can't say for sure it will help but it sure won't hurt.

    Your picture is too cute!

    I talked to hubs a little bit about it. If my daughter comes back with some of the genes that show sensitivity for gluten I think he will be more than willing. He agreed that we should have the initial testing done.

    I don't think my daughter had any of the AGA testing. That would have been helpful. She also didn't have the IgE or IgG testing.

    But we are going to do the enterolab testing so hopefully we will get something from that test.


  14. I would like to have both of my children evaluated for gluten ataxia. One has seizures and numb pinky and is clumsy along with several other gastro issues, asthma and eczema. The other was hypotonic at birth. He was screened for all types of disorders but none were identified. We figured that during the course of his life we would find something that would explain his hypotonia which also includes strabismus.

    One child was gene tested and is negative for DQ2 or 8 so they refuse further testing related to gluten intolerance. I am ordering enterolab studies for one of the kids but now we are wondering if the hypotonia is related to gluten as well.

    Because one is gene negative I would really like for them to see a neuro who knows his/her stuff around gluten issues.

    Any help appreciated.

  15. Dr. Zelnik concludes that the therapeutic benefit of the gluten-free diet was demonstrated only in patients with transient infantile hypotonia and migraine headache.

    That is what my son has! OMG this is going to be hard to convince my hubs but I may need to try! I think I will get his blood work ordered first. And mine this week.

  16. Me too. Seriously.

    We celebrated with champagne and :) I danced with wild abandon in my living room last night !!

    I told you--at one point, I could not even walk without pain or shortness of breath or without listing to the right or left or banging off a wall.

    I spent the last 3 NY Eves in agony, gluten delirium, burning with pain, just a freakin nightmare.

    I am one of several on here who are like the phoenix who rises from the ashes.

    Ravenwoodglass, Eatmeat4good, Gemini...so many more...

    Warrior Princesses, each and every one. :)

    Absolutely amazing. I can't wait to get back to eating gluten free. I am excited about it.

    Glad you are all on the road to recovery!

    Happy New Year and so glad you celebrated the new year and your new life!

  17. next I am going to have to focus on my son. He has been hypotonic since birth. Didn't walk until age 2 (didn't stand either) and he is still floppy and uncoordinated. My husband isn't going to buy this one so easily and my son will not want to go gluten free either. Maybe if I explained that it would help him run like his friends but I can't promise that because who knows if it will reverse with GFD.

    Sorry for rambling.

  18. Not good. That does not happen without a reason.

    I had parasthesia throughout my entire body from gluten-induced neuropathy. I had ataxia, burning nerve pain and various other neuro issues. But the total numbness was last to show up. My foot went completely numb once when I was sitting and when I stood up and tried to walk, my ankle buckled right under me and I heard Crack, crack, crack....I almost passed out from the sound and the pain that shot through me. Fortunately, it was "only" a severe sprain--ligaments and all--and it was bruised and created a half dozen pretty rainbow colors :rolleyes: and was swollen from toe to mid- calf for 2 months. I am still rehabbing it and hope the damage is not permanent.

    I hope you are writing down ALL of J's symptoms --even if they seem unrelated---for the next doctor visit.

    Oh and yes, I have list on my computer and I just added it. :)

  19. Not good. That does not happen without a reason.

    I had parasthesia throughout my entire body from gluten-induced neuropathy. I had ataxia, burning nerve pain and various other neuro issues. But the total numbness was last to show up. My foot went completely numb once when I was sitting and when I stood up and tried to walk, my ankle buckled right under me and I heard Crack, crack, crack....I almost passed out from the sound and the pain that shot through me. Fortunately, it was "only" a severe sprain--ligaments and all--and it was bruised and created a half dozen pretty rainbow colors :rolleyes: and was swollen from toe to mid- calf for 2 months. I am still rehabbing it and hope the damage is not permanent.

    I hope you are writing down ALL of J's symptoms --even if they seem unrelated---for the next doctor visit.

    I am amazed you are still alive. Seriously.

    We have an agreement that she will tell me stuff that is happening to her even if unrelated. So she told me about her pinky again. It has been numb for about a month and I told her that I doubt that was related and we laughed. I just read about gluten ataxia and I am once again floored. When will I not be amazed by the damage gluten causes?

    As you know, J is back on gluten because she really wants that biopsy although I think her neuro symptom is more taxed than her gastro system so I really doubt they will find anything. Anyway, she had bad gastro complaints the first day back on gluten but now she hasn't said anything about it. Either she isn't telling me or it isn't bothering her. I thought hubs was going to back down on his suspicion that is IS gluten but he is more focused on her mood and family dynamic. While off gluten she played outside and got along better with her brother now she is snarky, inside and fighting with all of us. She is fine with her friends though.

    I am rambling again but I was starting to doubt myself because of the lack of gastro issues but duh, I need to look at my entire child and she just AIN'T right.

    We are waiting for the enterolab kit. My friend who has child with celiac said she gets to ticked off at the money undxd Celiacs and NCGI have to spend to get diagnosed and be validated by the medical community. Then they stick to you with the more expensive food too. She is furious about it. It is ridiculous!