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researchmomma

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researchmomma last won the day on February 14 2012

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  1. Your daughter is DQ5. On the Enterolab reports, the numbers in parenthesis are the modern designations. DQ1 is an old serotype that got split more accurately into DQ5 and DQ6 in the '90s and isn't used much anymore.

    Thank you Skylark. I have a question for you. I know that GIs don't really believe in the fecal ttg results as they haven't been properly correlated to blood work through clinical trials. However, since my daughter has low total IgA and she came up a bit elevated on tTg IgA, do you think that holds any weight? I talked to the lab and they were surprised she came up elevated with a low serum total IgA. They said that made it more significant and that I should discuss it with the GI.

    They also state that the GI can't really dispute the the fecal fat result. She obviously is not absorbing fat and possibly other nutrients. Do you agree that the GI may actually consider that fecal result significant???


  2. I remember! And that is why I looked for the nuero connection article ;)

    The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency perhaps??--What did the report say?

    I sent it to you in a PM. However, her fecal fat value 490 and typical results for pancreatic issue is 600-1000. But I will bring it up to her GI. what a joke that will be.

    I think if I bring this enterolab report to her, she will blow me off.

    Anyone else have any luck in convincing their docs with the enterolab reports?


  3. Well, I had no doubt your daughter was gluten intolerant from all you have told me. Looks like Mom and Dad are gluten sensitive (at least) as well.

    Genetic Testing for Celiac Disease by Edwin Liu, MD Jan 2006

    Genetic testing is available that can show whether you carry the genetic predisposition for developing gluten sensitivity or celiac disease. It is not diagnostic of active disease, but it may provide supportive information in cases where someone is symptomatic, but fails to meet the rigid criteria for a solid celiac diagnosis. It is also used to rule out Celiac Disease in those who do not carry the genetic predisposition for Celiac Disease.

    95% of all those with celiac disease will show one of two genetic markers, HLA DQ2 (90%) or HLA DQ8 (5%). As many as thirty percent of the population carry this genetic makeup but only one percent develop Celiac Disease.

    Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. Since about 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, it may be questionable practice to rule out Celiac Disease solely by the absence of the main genes (HLA DQ2 or HLA DQ8).

    While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population.

    From "Gluten sensitivity as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

    "Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

    If it walks like a duck, quacks like a duck.....

    Great info and one of her biggest issues is neuro. She has occipital based seizures and a few other weird ataxia issues.

    Well, even though the medical community doesn't really recognize DQ 1 as a gluten sensitive gene, it does make me feel better. I know that a few docs believe, but not many!


  4. Well after 2 months on this forum and almost 13 years of bad health, I think I have a little confirmation of gluten intolerance in my daughter. However, the diet has been the best confirmation.

    Her IgA results are somewhat negated because her total IgA serum is low 43 and normal is 68-300 (this was checked twice) but Enterlab said to call them when the results are in so they could help interpret. I dont' think I need to do that.

    Gluten Sensitivity Stool Panel

    Fecal Anti-gliadin IgA 7 Units (Normal Range is less than 10 Units)

    Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

    Quantitative Microscopic Fecal Fat Score 490 Units (Normal Range is less than 300 Units)

    Gluten Sensitivity Gene Test

    HLA-DQB1 Molecular analysis, Allele 1 0501

    HLA-DQB1 Molecular analysis, Allele 2 0501

    Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

    Isn't DQ1,1 also associated with Celiac Disease???? Any comments and help welcome!


  5. Hey all. I got my diagnostic test back today for TTG IGA which were in the normal range. This is what I expected as I mostly present with neurological problems and according to the research coming out, AGA IGG is a better dignostic marker for that type of celiac presentation and I wasnt tested for it.

    But more importantly and what I would like to share with all of you was the response of my neurologist at the findings. I think you'll find it heartwarming. Especially for those who struggle with the symptoms but the blood tests come back negative and you feel like you're fighting an uphill battle to get validated.

    When he told me my IGA levels, I said, "So, that means I'm negative cause I'm in the lower end of the range." He explained that no, it doesnt, the ranges are based on a base line of only a 1000 people and who knows how many of those have undiagnosed celiac which skews the ranges. He cited a recent study where it was believed that 1 in 20 people (U.S.) might have some form of celiac but don't know it to be celiac. In a random testing of a 1000 people to establish a base line for TTG IGA, 1 in 20 of those thousand people probably have undiagnosed celiac and their levels get included in the base line.

    So take heart everyone. Heres another reason why you might be negative on the TTG IGA serum test.

    I would love to see that study! Can you get a link?


  6. I still haven't quite got the hang of the brown rice pasta, but my 'go-to' noodles are asian rice noodles, the ones I have are from Thailand. They would probably be perfect for a tetrazzini. I bring the water to a boil, put the noodles in and sort of squish them down into the water, and let the water come back to the boil. I then let them boil for 1-2 minutes, stir to make sure they're not sticking together -- shut off the heat and cover the pot for about 5-6 minutes. I like them a little softer (but they're not mush), so I go for the extra minute. If you're going to re-heat them do it for somewhat less time. Then remove the lid and stir to make sure none are stuck to the bottom -- usually they're not. Drain, and they're ready to add sauce or whatever!

    I tried that method with some brown rice spaghetti a few days ago, and it was under-cooked -- which might be o.k. if you're going to bake it in some sauce or something.

    hi Ciamarie. How are things? Yes, I cook with those noodles too but haven't used them for the glutenlike pastas that I want to make. Good idea.


  7. You know what? The second time you make pasta it literally takes 30 minutes, start to finish. Honest. I make it once a week as it is so quick and delicious. What kind of stand mixer do you have? Mine is a KitchenAid and I do have the pasta attachments. They really do help. It can be done by hand if you roll the dough thinly. This is what I do for lasagna sheets. To me the attachments are worth it but they are sort of expensive so if you think you will be making a lot of pasta it pays off.

    I will post my recipe. Am lying down at the moment for a bit but will post it later.

    That is awesome that you love to travel and lived in Prague! What did you get to see when there? Prague is one of the most beautiful cities I have been to. Man, we love it there. We really enjoyed Cesky Krumlov, Olomouc and the many castles as well as the Cesky Raj region. Oh, and lovely Telc! We also found Kutna Hora interesting.

    Yes, I do love Croatia's food because it is so darned fresh! Our house is located only ten minutes from the sea so we can meet the early fish boats with their catch. We harvest our own wild herbs, fruits, nuts and hopefully mushrooms in the future. Most konoba owners grow their own veg and herbs, make their own olive oil and wines and perhaps raise their own poultry and livestock. It is incredible what is available. The climate is lovely, too! :)

    Back to pasta - you can also add in a bit of chestnut puree OR even crush chestnuts and place them between two sheets of pasta and put that through the pasta roller attachment. Then you have chestnut pasta that is beautiful and delicious. And just think about all the ravioli and other types you can make. I do not have a ravioli cutter - I just roll out the sheets using my roller attachment and my ravioli wheel. Making homemade pasta somehow makes you want to make fabulous sauces to go with them as well. This could be a whole new world for you! :D

    Yes, I think pasta making is in my future! Sounds so yummy. This gluten-free thing has awakened the cook in me! I am still trying to get the hang of baking gluten free but I don't find baking as much fun as cooking.

    I have a KitchenAid as well. I will look into the attachments. Have a good rest.

    Cesky Krumlov is one of our favorites and Kutna Hora is really creepy yet beautiful all at the same time.

    Do you live in Croatia? I also live near the sea but on the West Coast of the US. We love it and really missed the ocean while in Prague.

    Our most interesting trip was to Egypt. However, a week in Tuscany and another trip to Slovenia and Croatia was truly amazing as well. So many countries and so little time and now we are back already!


  8. Yeah, I've looked at all their panels! They also have a panel for assessing cross-reactive foods, and another to determine the specific causes of leaky gut... but funds are limited.

    Since the Cyrex test does include DGP (thanks for clarifying), I am very much leaning toward it. I think this whole panel is only about $360. My dr's office still hasn't called me back about costs or ordering from Cyrex (which I'm sure will require a bunch of extra paperwork) but I am thinking that's the direction I'm going to go, rather than with the EMA.

    Do you think the idea of only ordering the total IgA if IgA numbers come back low is a good idea? I'm assuming it doesn't matter whether I'm eating gluten or not for that one.

    I ordered the Celiac Panel from ineedlabs.com and it was 200 dollars for the panel which included EMA. AND I didn't need a doctor to order it. They use LabCorp.


  9. My pasta is always homemade now, too, as I found a delectable recipe that truly tastes like gluten pasta. Anyway, it does not stick, nor does it clump at all, even when re-heating. I can add herbs, spinach, butternut squash, etc. to it. If anyone is interested in the recipe just let me know and I will type it up. Perfectly cooked in 3 minutes but if you overcook it nothing really happens! It is very forgiving, unlike rice and corn pastas.

    A commercial brand I used to use is King Soba - I really enjoyed millet and purple sweet potato, buckwheat, etc. I find that they are more flavourful than others I've tried and have great texture. Also re-heat well. They are a bit more expensive but definitely worth it. These would be the only commercial ones I would use if I were not making my own.

    All the best on your pasta cooking mission! :D

    I have never made pasta before. I love to cook but making pasta seems so daunting and time consuming. However, I see it will be part of my future. I would love your recipe if you don't mind typing it.

    I have a standing mixer and I thought I could also buy a pasta attachment. Is that true?

    BTW, I love to travel too. I read that you loved the food in Croatia. I do too! I lived in Prague, CZ for two years and we were able to travel to some amazing places.


  10. Thanks everyone this is very helpful.

    J isn't an Alfredo fan. Funny she isn't in to rich foods because they make her stomach hurt. Once she has been gluten-free for 3 months, we agreed to try some of the foods that made her feel sick before. I think she will be pleasantly surprised! Good to see you too IH. :)

    Thanks again and chime in if you have a good method or favorite pasta.


  11. Do you have a good way to cook gluten-free noodles so they aren't mushy or under cooked? I have had both of these things happen to me.

    Also, with gluten pasta, I could cook some up on Sunday and stick it in a ziploc and use it during the week for kid's lunches. Is that possible with gluten-free noodles or do they not last long after cooked? I could just try it but it is expensive to waste good food, ya know?

    We are going to a family gathering and they are cooking baked ziti and chicken tetrazini. I am making a gluten-free pasta for the 2 gluten intolerants, so I would love to bring up already cooked spaghetti noodles and toss them in with veggies and chicken (daughters fav). Can I make them ahead or do I need to cook them onsite?

    Thanks in advance.


  12. My son was diagnosed at age 10 (he is now 17). Most days for lunch he packs a ZonePerfect bar. Not all the versions are gluten-free, but several are, including Double Dark Chocolate, Chocolate Almond Raisin, and Fudge Graham (despite the name). Supplements with chips, snack pack pudding, applesauce, and fresh veggies or fruit.

    Zone perfect are gluten-free??? wow, that makes me smile!


  13. Great post.

    My almost 13 year old is a thermos girl. We put taquitos (Delimax) cut in half, healthy choice chicken rice soup (I add some salt), chili (Stags leap it says gluten free on can), fried rice with chicken and mushrooms, chicken shredded with bbq sauce, chicken soup with gluten-free noodles, etc.

    Fruit or cucumber or edamame

    gluten-free pretzels, ranch doritos, tortilla chips, etc.

    cocoa pebbles bar or mini hershey bar for snack

    And I always pack her a gluten-free Tiger's Milk bar (the Peanut Crunch is NOT gluten-free but the others are) so she can have that if she isn't full.

    Love all the other ideas. Keep them coming!


  14. My daughter was sick all weekend. Just like the pre gluten-free days. We racked our brains trying to figure out the culprit. It was right in my cabinet. She had bought Rice Krispie Treats and told me they were gluten-free. She had looked at the label and it said "Contains: Wheat and Milk". It didn't list wheat so she thought she was in the clear. I could have sworn our neighbor who has Celiac said they were gluten-free so I didn't even LOOK at that damn box. Malt flavoring is the second ingredient on the label. d'oh! Texted my neighbor who said "those aren't gluten-free!!!!"

    Well we figured it out so we both are relieved. She was so sick last night and she had two of them yesterday....she kept saying "no more gluten". We learned a valuable lesson!

    It sucks being a newbie sometimes. At least we found it!


  15. Skylark, what is the sero equivalent of this The third so-called celiac gene is HLA-DQA1 *0505. ?

    This stuff is so interesting to me. My daughter had her gene testing at Prometheus but they only reported: Negative for DQ 2 or 8. So I am considering giving them a call to see if they have any further info.

    She got glutened this weekend and the reaction WAS pretty strong so we continue to confirm via elimination that gluten is a problem for her.

    The gene info is more for my own personal information. My grandmother died from potential Celiac related (or NCGI) diseases (duodenal cancer and pernicous anemia) and my Mom has Grave's and Parathyroid tumors. So the info is really interesting to me.

    Edited to correct that the reaction to gluten WAS strong not wasn't.


  16. My eating out experiences have been great except for twice. I do not go to chains. If there is a new place we want to go to I call to speak with the chef or manager and ask a lot of questions. Great restaurants should know/expect this. If they even go ahead and explain how cross contamination is prevented and so on before I ask, that is a wonderful sign. We are the guests and pay a lot of money for a great experience so believe me, I am very thorough when asking questions.

    Thankfully there are seveal high-end places I trust. We have no safe places where I live so we must drive 3 hours to get to the city. I always call ahead to alert the staff; in fact, very good restaurants encourage this on their websites. The places I go to are discreet, incredibly knowledgable and even have gluten-free bread service. One place even brings me beet, carrot and turnip "chips" with an aioli or compound sauce as an amuse bouche. These places have highly-trained professional chefs, pastry chefs and servers. They explain precisely how my dishes are prepared. They places rarely have deep fryers. One does but it is dedicated solely to their truffled fries. In fact, the best restaurant menus should contain about 80% or more of their dishes that are naturally gluten free anyway and/or easily made gluten free. They places also use local fresh food and change their menus at least monthly to showcase a special ingredient. I am made to feel special and spoiled yet treated no differently from anyone else dining. We do tend to tip higher as my requirements sometimes do take extra work and time explaining and so on.

    I travel to Europe regularly and have found restaurant cards to help immensely as we go to countries where English is not the first language. I have not tried them in North America, however. In fact, I find Europe to be more knowledgable and aware than most places around here where one place asked me, "Are you a little celiac or a lot celiac?" Not a good sign. Europe? Much easier.

    It can be done safely if you do your homework. After a great dining experience I am sure to email the restaurant to thank them. They will realize how truly important it is and continue great service/food. :)

    Your post was very helpful. I am wondering about chains. We just visited PF Changs and they seemed very up on the gluten issue. However, my daughter got glutened somewhere this weekend and we are trying to figure it out. I am just wondering if others have been glutened there. I hope not because she loved it.

    She was a birthday party playing with uncooked spaghetti noodles. They had to make a tower with marsh mellows and spaghetti. I asked her if she washed her hands before eating and she said no. Maybe that was it.

    Thanks!


  17. How many of you out there are “self diagnosed” Celiac’s or going gluten-free because you couldn’t get a positive results? I’m just curious as I’m waiting for the results of my blood work that was done this morning (and so far nothing has ever come back in MY favor). I’ve decided that even if the blood work comes back fine I will probably do a 3 month gluten-free test. This is the first thing in the years of sickness that actually makes sense.

    Also, everyone woman on my mom’s side of the family has underactive thyroid, which I was also tested for today. I’ve been reading that sometimes there are correlations between thyroid problems, and Celiac. My mom has been on synthroid for years in the past few weeks of researching Celiac, I think she could have it too.

    My daughter has a long list of symptoms including occipital seizures. She tested negative. However, I was encouraged by what I read about gluten symptoms and a few forum members here suggested that we try the gluten free diet. We have seen amazing changes. We are still in the early stages of eating gluten free but even my skeptic husband is in shock over the positive changes in my daughter. Her anxiety seems lessened as does her cranky attitude. In addition, she is eating again. Before she went gluten-free, she would eat two bites and say her stomach hurt. She is short in stature. We are hoping for some growth in the next few months.

    My family also has some pretty amazing history like pernicious anemia, duodenal cancer, Grave's disease (thyroid disorder), osteoporosis and parathyroid tumors. Doctors and tests can be wrong. Or they can be right.... perhaps my daughter doesn't have Celiac but maybe gluten intolerance. We know it is real while they still debate its existence. When will they get it?

    So, if your tests are negative, give gluten the boot for 3 months and try it out. It has been a pretty amazing road for us so far!


  18. We have a gluten free cupboard and a gluten cupboard. However, no gluten flour in our house. My daughter is gluten-free (and I am to support her). I am travelling this week and my husband almost glutened her with some teriyaki sauce. marinade on chicken He realized it before he gave it to her. He said "I almost cut out the outside and fed it to her but I didn't want a demon on my hands". She gets really mean and cranky when she eats gluten because she is miserable. So when I get home, I am throwing out ALL condiments that aren't gluten free.

    My daughter doesn't have Celiac but she we are learning that she is pretty sensitive to gluten.

    We have two toasters and separate peanut butters, etc. Everything I cook is gluten-free and that's what we eat. The exception is breakfast before school and lunches. I pack a gluten lunch for my son and gluten-free for my daughter. However, my neighbor accidentally packed her son, who has Celiac, a gluten sandwich that was for another child. He got really sick so I always remember that story!

    One day, I think my house will be entirely gluten free. :)

    To the OP, great question!


  19. Knowing you as I do know, from all of our good chats, I am thinking you are being incredibly sarcastic here??? :lol:

    Just so the other readers know.

    Ahhhhh you know me so well! Yes very sarcastic. My friend emailed me and she will have her doctor check in 6 months because she is not malnourished so she can't have Celiac disease. Oh well, I tried.


  20. Mushroom: you said it sister. I have so many ologists for my daughter....can't one of them just look at the entire child and ask what is causing all this??? ARGH

    I am super frustrated because I have a friend who is 45 years old who lives in Germany has SEVERE osteoporosis, D and C alternating, lactose intolerant and so on and so on. I suggested that she may be Celiac or NCGI. She said: Oh, I will ask my doctor. She went today and they did a test where they put gluten on her skin (?). I am thinking a scratch test and told her NOPE she did not have Celiac. WTF???? She said she trusts this person, who is a homeopathic doctor, because she is always right. I begged her to get the test since it is a simple blood test but I doubt she will listen. Apparently, if you put gluten on your skin and have no reaction you are NOT gluten intolerant? Think of the time and money I could have saved!!!!!

    Sorry for ranting on your post but I guess this homeopathic doc looks at the ENTIRE person but they aren't doing such a hot job. So who knows what the best answer is.