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About DianeByrd

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  1. I was diagnosed when I was 13 y/o (I'm now 35). It is hard to be "different" when you are a teen, but it really is what you make of it. Knowing that shizo was linked to celiac, it was one of the major reasons I stayed gluten-free that and the stomach aches.

    I hated it when I told people I couldn't eat something and they would say, oh I'm sorry or that sucks! I just told them don't feel sorry for me. It usually put a stop to the weirdness. If they say Oh I forgot you can't eat that, just say well as long as I remember it will be okay. Also people tend to understand allergy allot better...Don't get me wrong I'm a huge advocate for educating about Celiac but some times it is just easier to say I'm allergic. Ultimately he will do what he wants, you can't force a person. Just try to be a good example and don't cheat.

    Oops! I clicked add reply before typing!

    Thanks for the advice. We tend to use the term allergry, but that leads to the inevitable question of what happens when you eat it? That's where the awkwardness arises; his symptoms tend to be emotional. What teen wants to say that? And he doesn't even believe that he has an allergy, since we've only tested via dietary changes.

    I'm also not too sure he'd respond well to warnings about schizophrenia. I know I didn't react well as a teen to the suggestion that I should be concerned about ending up the same as my mom.

    Any other thoughts?

  2. I was diagnosed when I was 13 y/o (I'm now 35). It is hard to be "different" when you are a teen, but it really is what you make of it. Knowing that shizo was linked to celiac, it was one of the major reasons I stayed gluten-free that and the stomach aches.

    I hated it when I told people I couldn't eat something and they would say, oh I'm sorry or that sucks! I just told them don't feel sorry for me. It usually put a stop to the weirdness. If they say Oh I forgot you can't eat that, just say well as long as I remember it will be okay. Also people tend to understand allergy allot better...Don't get me wrong I'm a huge advocate for educating about Celiac but some times it is just easier to say I'm allergic. Ultimately he will do what he wants, you can't force a person. Just try to be a good example and don't cheat.

  3. My 14yo ds is gluten, milk, and soy free (and free of artificial colors, flavors, preservatives). He and his two younger siblings are home schooled, so managing his diet is fairly simple. Our home is free of all those foods. The difficulty arises when there are special events - parties, invitations to spend the night at a friend's, weekend retreats. We always bring an all-in-one dish and dessert when we go to potlucks. We make dinners to bring to friends when they invite us over. I've given in some of these times when it is just my ds because I know how hard it is to enjoy social settings when food is such an issue. Sometimes, it is impossible to really participate if food has to be packed for several days! Anyway, when I've let him eat freely, I've almost always regretted it. Although, my husband has taken him to eat out in a pinch and allowed him to eat gluten and avoid only milk and he's been relatively OK from what I can recall. I'm pretty convinced though that milk, or milk and gluten together, send him into a rage for days. He thinks we're totally wrong. He thinks we're not understanding him and that his circumstances warrant how he's feeling. I'm not sure what is just part of being a teenager and what is diet related. I've occasionally gone off the diet when he has and have dealt with days of crying, which, like my ds, I feel are warranted by my circumstances, but I know are just much harder for me to handle when I've eaten gluten and milk. Boy, are we a pair together when we've gone off the diet! I'm not doing that to myself again. How can I help him embrace the need for the diet himself? One day, he'll be moving out, going away to college, having his own family, etc. He doesn't have any other symptoms to really point to; although, sometimes he'll get an ear infection, and this last time he's complained of stomach aches for a few days. His sisters are on the diet to deal with failure to thrive. My mother was schizophrenic. I've thought of warning him about the connection, but I don't want to go overboard. He respectfully stays on the diet when we tell him to. I'm just not sure what to do when he'll have several days of activities centered around eating out in a group setting for a camp, etc. I don't want him to feel totally weird. And what should he tell friends when they ask why he can't eat milk and gluten?

  4. I found a great recipe for quinoa flakes http://glutenfreegoddess.blogspot.com/2007...kfast-cake.html My kids love it.

    Now the problem is buying the flakes at a decent price. Does anyone have any suggestions for one online store that is generally least expensive? I though I had found a bargain price, but then the shipping still made it about $7 per 12 oz box of Ancient Harvest Quinoa Flakes.

    I can't even imagine spending over $10 a pkg for the flour, even though I know it is very nutritious.

    Also, I'd be grateful for any other advice about using the flakes or flour, if I ever do get around to spending that much money. What proportion quinoa flour is mixed with other flours, or is it used straight? I'm guessing that we'd be better off to reduce how much tapioca, rice, and cornstarch we bake with. I figure that we're doing better when we use the Four Flour Bean flour mix recipe from Bette Hagman.



  5. It's been awhile since I've posted. We've been trudging along on a gluten, milk, and soy free diet for a couple years now. I've honestly lost track of time. It's been a tough road at times - the high cost of food, the time involved in cooking from scratch, always packing food when we go somewhere, wondering if my family is getting enough of the right nutrients (fat, fiber, vitamins, etc.), juggling between cooking and shopping for my two dd's who need all the calories they can get with my husband's need to shed pounds, not getting to participate as easily in social settings, the doctors' disapproval, double checking what my dh buys and feeds them, and food just not being quite as tasty. I dread having to go back for a well-child check up to learn the possibility that one or both of my dd's have not moved up on the growth chart sufficiently. I felt so certain toward the beginning of this diet choice with much improvements in growth and a decrease in number of stools for the older one and some improvement in growth and a relief of constipation and high alkaline phosphatase levels for the younger.

    I'm thinking of doing a diet challenge, but should I do milk, soy, or gluten first? I was wondering if anyone could tell me if they've heard of someone not having diarrhea on a challenge? Is it possible that this is a natural reaction to being off of a food and would it happen to anyone regardless of their sensitivity to the food? Also, if I were to do the challenge, should I tell them? I'm concerned it would just confuse them, but I don't want to be dishonest either. They are 4 1/2 and almost 3.

    Is there any other way to know for certain? I'm so tired of continuing something that I have a nagging doubt about.

    If I do continue to maintain a gluten-free cf sf home, any suggestions on how to make simple, quick, well-balanced meals that are kid friendly, high in calories for them, easy enough to make lower in fat for my dh, and that won't break the bank?

    I'd really appreciate input.

  6. This is a tough call. I can personally say that I am really sensitive to gluten (although less so to barley gluten), and I have never reacted to Rice Dream. It was the only milk alternative that I liked when I first went casein free.

    The first few cartons I bought did not say anthing about barley on the label or I would have never bought it. The last one I did has a warning on it. However, I still bought it because I have not yet reacted.

    Thanks for posting this, I'll have to figure out what I should do. If guess if I really wanted to I could get my antibodies checked after consuming it daily for awhile. I don't want to give it up unless it's causing damage. Pretty soon there'll be *nothing* good left in my fridge! :o

    I'm not certain what is available up in Canada. Pacific rice milk is what we were using previously. Perhaps there is a health food store brand. We have a couple down here; Trader Joe's and Wild Oats both sell their own label of rice milk. It is good to know that you haven't reacted. I don't know how careful I need to be with my girls. I guess, as long as they're still moving up on the growth chart, we are probably okay.

    Congratulations on your upcoming wedding! How exciting. Yay for the all-gluten-free reception! We're having an all gluten-free (soy and casein free, too) birthday party today for my 4yo, who usually can't even eat most of what is served at gluten free events. I just saw the front cover of the magazine Living Without has an article about wedding receptions.

  7. I've been gluten free now for most of the last year and a half because of my two little girls' failure-to-thrive. At one point I thought I noticed a diminishing of my geographic tongue and the little, non-itchy bumps on the backs of my arms and my legs. I also seemed to be putting on a few much-appreciated pounds. That seems to have all disappeared. I can't remember how long or when the lapse in being gluten-free occurred, but it was at least 7 months ago, and it was only a few meals. My daughters have improved in weight gain, including the younger one, now that we've also eliminated milk and soy. Their frequent bm's for the older one has completely disappeared. The younger one has seemed to regress a little with constipation in the last couple weeks. The only noticeable issue with the older one is that she has bumps on her bottom that seems to lessen with ointment. She still wears a diaper at night. She doesn't even notice the bumps. Does anyone have a guess what my symptoms could be if they're not from gluten. I think we are very careful. The only place we really ever eat out is In-n-Out. I buy Trader Joe's brand because their customer service has assured me that their lines are cleaned well between runs, despite the warning labels. Could some other food allergy be causing the geographic tongue and bumps? I've had these my whole life.

  8. I am updating my own question, lol but hopefully it will help others. I just called the makers of Rice Dream. They told me that the NFCA guide DOES say that Rice Dream is not gluten free, and at the time of publishing, it was (semi) true. He said that at the time of publication, their company was only able to test to .002% of gluten content. Because of that, they didn't feel comfortable calling their product gluten free. They have since updated their testing equipment and are now ablt to measure gluten in ppm. They are happy to announce that ALL of their rice beverages ARE gluten free. So drink easy :)

    I just went to their website and read the following quote of their FAQ:

    "Is Rice Dream Beverage a gluten free product?

    No. Rice Dream Beverage is processed using a barley enzyme. Even though the barley enzyme is discarded after use, the final beverage might contain a minute residual amount (less than .002%) of barley protein. For a list of gluten free products click here "


    I guess I won't be finishing the cartons in our cupboard. I started buying it when a clerk at the store pointed out that it didn't have a gluten-containing ingredients listed. It even says gluten free on the side or the carton! I wondered why "gluten free" didn't have a check mark next to it like all the other features!

  9. My children love ground beef with taco seasoning. I do have a homemade recipe for taco seasoning as well as chili powder substitute that isn't spicy if you are interested.

    Other than that I was going to suggest some of the things you already did. :)

    I'm always grateful for new recipes! I have a taco seasoning recipe that the family likes, but it may be too spicy for her. What is your chili powder substitute? What percent fat is the ground beef you use? I've always wondered if the fat cooks off anyway.

    Roast the chicken, covered, of course, without overcooking it, and the dark meat will be delicious! :) Grilling chicken legs is fabulous too - the key is to just not overcook them. You can also use dark meat in soups and stews. Don't forget to consider getting ground pork and/or sausage as well, for higher fat options.

    What does covering the chicken do? I've usually only roasted whole chickens uncovered and we all like the skin that way. Where and in what form do you find the ground pork and sausage? Is it frozen, fresh, all gluten-free?

  10. Hi everyone!

    I'm looking for ideas of foods to feed my 19mo daughter who is "failing-to-thrive" (ftt) and the rest of the family who will have to eat along with her. We're already on a gluten-free diet because our older daughter was ftt. We just recently received results back from Enterolab indicating an intolerance to milk and soy, and we haven't yet introduced tree nuts or peanuts, so we're pretty limited.

    So far, all I can think of is eggs, avocados, coconut and coconut oil, sunflower seed butter, tahini, cooking with oil (olive, canola, etc.), and adding a supplement called DuoCal. Any ideas of other foods, or suggestions of how to prepare these?

    I only sometimes cook higher fat meats, such as brisket or 85% ground beef or salmon. Am I missing other high fat meats that won't break the bank?

    We typically cook boneless skinless chicken because that's what everyone likes. If anyone has any suggestions of how to make dark meat as palatable that would be great.



  11. How about Manischewitz macaroon cookies? Their website lists foods that are free of a given allergen. If the package also says "pareve", it's dairy free also. I'm not sure why they don't just give a list of all their items that are milk free.


    Cappaccino Chip Macaroons

    Chocolate Chip Macaroons

    Chocolate Chunk Cherry Macaroons

    Chocolate Macaroons

    Chocolate Morsels

    Cinnamon Raisin Macaroons

    Coconut Macaroons

    Coffee Flavored Macaroons

    Dark Chocoate Covered Macaroons

    Banana Split Macaroons

    Toffee Crunch Macaroons

    Fudgey Nut Brownie Macaroons

    Honey Nut Macaroons

    Maple Pecan Macaroons

    Meringues (All)

    Rocky Road Macaroons

    Ultimate Triple Chocolate Macaroons

  12. I so agree with all the posts that this lawsuit is very bad for the celiac community. It's hard enough to get a company (restaurant or food manufacturer) to say that a product is safe to eat. Even companies that sell specialty gluten-free foods and ingredients have warning labels! How can we ever be certain if what we've eaten is gluten-free if our symptoms are subtle? I wouldn't mind not eating out, except it is very convenient being on the go with kids, and it is a yummy change of pace.

    Diane (gluten-free since January 26th)

  13. Excellent fact sheet. And more than enough evidence to go with the good life.

    Do you know if there is some documentation out there that states in plain english the fact that whether you are asymptomatic or not, any (and all) gluten is damaging? I need some help dispelling the notion that a little won't hurt.


    Excellent fact sheet. And more than enough evidence to go with the good life.

    Do you know if there is some documentation out there that states in plain english the fact that whether you are asymptomatic or not, any (and all) gluten is damaging? I need some help dispelling the notion that a little won't hurt.

    This is a great question! I've been wondering the same thing. I don't see an answer to the question, though. Has anyone replied? Even if there isn't any documentation, I'd love to know what others say to people who question them about avoiding even the smallest contamination.

    Our family has been gluten-free since January 26th, except for a couple known accidental glutenings (one on February 5th - malt in the chicken broth, and one on February 12th - communion). Does that completely wipe out all our previous efforts to stay gluten-free? It is so hard to move forward in the dark, since our symptoms are not obviously celiac related. I've thought I've noticed improvements in myself (less fatigue, fewer little bumps, maybe a little more weight) only to find another day my bumps just as prolific and itchy (They've never itched before!) and headaches every few days (not at all typical for me). We can't tell yet if our daughter is gaining weight and she is the whole reason why we started the diet again. My husband thinks he's noticed a slight improvement digestively, but since he still consumes milk products here and there and he's stopped taking lactase pills because we don't know if the ones he has are gluten-free, it's hard to tell. I'm also not sure about my son. He has still complained about headaches some.

    I was VERY tired and had a headache today after eating at Olive Garden off their gluten-free menu. I don't think I'll do that again. By the way, I read a very helpful tidbit off the Gluten Free in San Diego website in case any of you choose to go Olive Garden: the brocolli is blanced in the pasta water! I was glad that I knew that ahead of time so I could ask for it to be cooked separately. I wonder if the seasoning on the brocolli or Salmon had gluten. Last night we ate at Outback Steakhouse in Oceanside, but the manager there was very reassuring that their staff knew how to avoid cross contamination and had already served three other gluten-free tables just that night. Needless to say, if my fatigue and headache were gluten induced, I think it was more likely to be Olive Garden than Outback. Personally, I think it's best for our family to avoid eating out for the next couple of months, just to be sure we're really getting the gluten out of our systems. These two restaurant outings were social events, so I'm not sure how to handle this is the future without becoming hermits.

    I digressed from the original question. I still would really love to know how to answer people who question the small contaminations. Is there no benefit if we've eliminated the vast majority of the gluten? I inadvertently offended a friend when she borrowed my knife off my plate (she had bread on hers) and I asked her not to put it back on my plate.

    Thank you everyone for all the helpful information I've read here. I only wish I could be 100% sure that we do or don't have celiac disease and that we're truly gluten-free while were trying to figure it out.


  14. Our family has been gluten-free for thirteen days, except for an accident four days ago (malt in the chicken broth we used for homemade soup). Our 2 1/2 year old daughter is the only one who has been tested through Enterolab. Her results indicated that she not only had antibodies for gluten but also for casein. Can I hope to see improvement without eliminating milk? How long should we be gluten-free before trying to remove milk?

    When she had a trial gluten-free diet a year ago, she was also off soy because the doc thought soy was a more likely culprit than gluten. Would a soy allergy cause failture to thrive?

    What about the rest of our family; my husband, our 9-year-old son, and I all have suspicious symptoms?Would it take longer for us to see results for ourselves than for our daughter? Do certain symptoms clear up quicker than others?

    I really want to believe the results of Enterolab despite the doctors' doubts, but I can't feel committed to this lifestyle for the long haul without seeing positive change.

    Thanks for any input.

  15. We're going gluten-free starting Thursday for a trial period of 6 weeks. Do we have to change personal care products to be truly gluten-free? My son and I have had bumps on the backs of our arms and legs all our lives. I onced asked an expert in the celiac community and she didn't think it sounded like dh. We're primarily going gluten-free for our 2 1/2 year old daughter who does not have bumps or any other skin condition. Last time we put our daughter on a gluten-free trial we didn't change personal care products and we still noticed a dramatic weight gain. What do you recommend? I certainly don't want to mess up our trial, but I'm not sure we can get our act together quickly enough to get appropriate soap, shampoo, toothpaste, styling products, etc. Wow! What else might we need to replace?!

  16. Our family is about to go on a gluten-free trial for 6 weeks because of our 2 1/2 year old (Enterolab results are positive and previous gluten-free trial a year ago was successful). I suspect that my husband, 9 year old son, and myself may all have a gluten intolerance. My question is what to do with my 8 month old daughter who is breastfed and has only been given a few low allergenic gluten-free foods (vegies, fruits, brown rice cereal). I realize she may have been exposed to gluten through my milk if I have a leaky gut. Is that right? I've read, though, that it is best to introduce gluten while they are still breastfeeding to prevent a reaction. If the next six weeks prove very successful and we don't want to go back, should I give her gluten or just keep her gluten free, too?

  17. I've been reading this board periodically for the past year, wondering the entire time whether our now two- and-a-half-year-old daughter has gluten intollerance. We're in the last stretch, hopefully, of coming to a definitive conclusion. We finally turned to Enterolab after the pediatric gastroenterologist exhausted her efforts at getting to the bottom of our daughter's failure to thrive. The results were:

    Gluten Sensitivity Testing

    Fecal Antigliadin IgA 32 Units (Normal Range <10 Units)

    Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10


    Microscopic Fecal Fat Score: 42 Units (Normal Range < 300 Units)

    HLA-DQ Gene Molecular analysis: HLA-DQB1*0501, 0301

    Food Sensitivity Testing

    Fecal anti-casein (cow's milk) IgA antibody 21 Units (Normal


    <10 Units)

    Since our doctor won't accept these results as valid (blood tests and biopsy were both negative), and I have some doubts myself, we plan on putting her on a gluten-free diet for a six-week trial to confirm the results. Last time we put her on a six-week gluten-free diet was exactly a year ago, at 18-months of age, with a significant two-pound gain. She had gained less than two pounds from ages 12 months to 18 months and gained 4 pounds in the 10 months since being off the gluten-free diet trial. What amount of growth should we expect this time around as a measure of success, now that she is older?

    Also, with the new labeling in effect, I'm confused about what is safe. Last time, we gave her items that had no suspicious ingredients. Those same products now have warnings such as "processed in the same plant as wheat". Where should we draw the line? I really stressed out about avoiding gluten last time, and limited her contact with others who might accidently give her food.

    Lastly, the positive anti-casein IgA antibody results from Enterolab have thrown me for a loop. I suspected milk as a potential allergan when I noticed what looked like blood in her stool within a couple days of introducing her to Pediasure, a milk-based formula, at twelve months. I stopped the Pediasure, but the doctor could not confirm my observation, so the issue was dropped. I later introduced milk again with no noticeable change. When and how should I consider eliminating casein without complicating the gluten issue and potentially restricting her caloric intake too much?

    I welcome any and all advice, as I'm overwhelmed and want to move beyond continually trying to figure out if I'm feeding my daughter well enough for her to grow properly.

    Thanks in advance,


  18. EnteroLab sent me a coded invoice and I then filed the claim with my insurance company. I am in a HMO, so it would only play 60%, but that is better than nothing.


    Wow! Can you give me any tips on getting my HMO to pay? I have Blue Cross and the medial group has denied the request to pay, so I'm appealing to the insurance company directly. With Blue Cross HMO, the medical group is responsible for paying for labwork. I haven't yet ordered the tests, hoping to first get approval.


  19. Has anyone ever heard of someone getting negative test results from Dr. Fine? It seems to me that everyone I've read about already believed they had celiac disease or some form of gluten sensitivity and that Dr. Fine simply confirmed it. I'd love to know what percentage of patients he tests have positive results.

    I'm asking because I've put off the test for my two-year-old daughter because of the expense. Doctors have run tests on her with only a positive for IgG. The 72 hour fecal fat and HLA DQ2 and HLA DQ8 and biopsy were negative as well as all the other antibodies in the blood.

    The main reason I think my daughter may have a gluten sensitivity is the incredible weight gain she had for a 6 week gluten-free diet - 2 lbs when she was only 18 months! Also her dad has lactose intollerance and IBS and I have never been able to put on weight.

    Anyway, I'm hoping to convince my insurance to approve payment for Dr. Fine's tests. In the meantime, I'm jumping through the pediatric GI doctor's hoops, trying Prevacid to see if she'll gain weight.


    The lab is certified with whatever organisation certifies labs, so I do believe they do the tests you pay them to do. They question is, whether you believe they are valid tests, given that so many more people get positive results this way. There's no evidence yet that all those people with stool antibodies are healthier off gluten, other than all the stories like Rachel's that you read here.

    Best wishes,



  20. I would strongly suspect any doctor thinking a gluten free diet makes one prone to malnourishment is on the wheat industry's payroll. That is ridiculous. Just take a look at this chart which talks about the nutrients in quinoa (a gluten free grain).


    Anyway, I initially read your post because you have my mom's name, well, spelled slightly different. But caught my eye.

    Take care



    If she's not being paid off by the wheat industry, she at least has a prejudice against parents who would consider a gluten-free diet without "an objective diagnosis". Thanks for the link. I love quinoa! I've printed it out for the doctor.

  21. DianeByrd

    Question 1:  Did your child's 6 wk gluten-free dieting directly precede the bloodwork and endoscopy?  If so, that possibly made those tests invalid.

    Question 2:  Did the gene test check for the non-celiac disease gluten sensitive genes or just the usual suspects, HLA-DQ2 and DQ8?  Enterolab does check for these other versions.  (I'm HLA-DQ1,DQ1 and do have gluten sensitivity per Enterolab and per dietary testing, but have low genetic probability of developing damaged villi; nonetheless, my symptoms include osteoporosis and anemia).

    Suggestion:  Wall Street Journal today (Oct 10, 2005) has a featured health article regarding reflux highlighting some concerns around "treating the symptoms".  (Unfortunately they did not mention gluten as being a possible cause.)  You might want to read that article.

    Comment:  I personally think endoscopies are way overrated since they are mostly looking for actual celiac disease, "the tip of the iceberg", instead of general gluten sensitivity.  I would trust dietary results first.  There are reports that non-celiac disease gluten sensitivity can cause nutrient metabolism problems even when there is no detectable intestinal villi damage.

    Comment:  Sounds like your dr is a little confused re celiac disease and gluten-free as to which causes malnutrition  :(

    Hope this helps and you find a solution soon.



    RE: Question 1

    She was on the gluten-free from mid-January till the end of February. She has been on a gluten-free challenge ever since. The endoscopy was performed September 2nd.

    RE: Question 2

    The test was done by Prometheus and only mentions HLA-DQ2 / HLA-DQ8. I appreciate the tip. I'll ask about HLA-DQ1. Is Entero Lab the only one that tests for this? I need a lab that her doctor will use and our insurance will cover.

    I would love to read the Wall Street Journal article. I'm not a subscriber. I'll see if I can get it at the library.

    Thanks for all the input.

  22. In brief, has anyone else had sores in the esophagus and small bowel show up in the endoscopy? Are these potential signs of celiac disease/gluten intollerance as opposed to reflux? For more details, read on. Otherwise, I'd just love to know I'm not crazy to think that my doctor may be wrong.

    I've been reading this site for months. We just had an endoscopy and biopsy on my 27-month old daughter. The Ped GI sees no evidence of celiac disease under the microscope and discounts my 6-week gluten-free trial that put 2 lbs on my daughter. My husband wants me to keep working through with the the doctor to uncover the cause of her failure to thrive, so she's now on 3-4 months of Prevacid for the supposed reflux (no symptoms of food reflusal, spitting up, etc., just a sore/"cold sore" in her esophagus and her small bowel). The doctor does not want me to try the gluten-free diet again until after this trial on Prevacid because of "the social stigma" and the potential "malnurishment" of a gluten-free diet!

    I'm convinced that it is gluten intollerance because of the 6 week gluten-free trial that put so much weight on my daughter. The genetic test came back negative for celiac disease. Food allergy tests came back negative as well. 72 hour fecal fat test also negative, though one spot fecal fat was positive. We haven't been able to afford the test through Dr. Fine, but hope to within the next couple months.

    I'm so grateful for this website!