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cyberprof last won the day on February 13 2012

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  1. June27.....I am sitting here reading the Autumn 2012 edition of the Journal of Gluten Sensitivity, which is published quarterly by Celiac.com and there is an article on the association between Sjogren's and Celiac. What jumped off the page at me?

    This statement.....complications of Sjogren's include tooth decay and corneal ulcers. So.......it looks like another piece of the puzzle is coming to light for you. Maybe you should take a copy of the article to your doctor to further educate them. This should convince them that you need the blood work! :)

    Wow, good catch Gemini!

  2. Should I be concerned that Vitamin A would start him into puberty before a catch up spurt even if he's not 110 pounds? Maybe a good question for his doctor?

    glutenfreex4, The way I understand it is that puberty doesn't have to occur for the growth window to close, but yes ask your doc. You might also ask for a bone-age scan too. It's a 5-second x-ray scan and tells bone-age in years. If his age is higher than the bone age, he likely has time to grow.

  3. Glutenfreex4,

    I agree with gottaski - you should get levels tested for Vit A, Vit D, B Vit and Iron. Calcium too if possible. Even if he's not deficient, I don't think taking a Carlson's capsule would be harmful. You can look up reputable maximum supplementation levels of specific vitamins via sites like National Institute of Health (US) or Mayo Clinic.

    If he's not dairy intolerant, a Boost drink daily is a good idea.

    Regarding the recipes, the carrot cake, cornbread and enchiladas aren't really "mine" - I make the Gluten Free Goddess's version found here: http://glutenfreegod...arrot-cake.html And the cornbread is hers too but I make it without the green chilis: http://glutenfreegod...een-chiles.html

    Chicken enchilada recepie: http://glutenfreegod...enchiladas.html (Sorry to call them "mine" but she has great recepies that have become family legends. And her dark chocolate brownies are to die for - even for gluten eaters.)

    I make chili from an old Betty Crocker cookbook and I'll post that later.

    What kind of curry does your family like? Spicy? Authentic? With cream or coconut milk? I have several curry recepies.

    Also, I'd like to put in a plug for Stephanie O'Dea's "A year of slow cooking" blog - she cooks only gluten free and these are great family meals. http://crockpot365.b...ili-recipe.html

    Good luck and let us know how it goes.

  4. Oh, a few more things:

    I read a medical article/study that said that for boys, they don't go into puberty until they reach ~110 pounds. Another study proved that Vitamin A supplementation for boys was as effective as hormone supplementation to reach puberty.

    So when he went gluten-free, we had him take Carlson's Cod Liver Oil capsules (lemon flavor and they don't taste like anything at all and no aftertaste) that have lots of Vit A and D and are easily absorbed by damaged intestines. We also had him take a sublingual Vitamin B and a gluten-free multi-vitamin.

    We also tried to get him to eat more, which was hard because eating hurt at least until he healed a bit. So whatever he wanted to eat, I'd cook. It took him a while to get used to gluten-free replacements but he liked my home-cooking "tweaked" to be gluten-free, like chili and cornbread, chicken enchiladas, chicken curry over rice, pot roast and mashed potatoes.

    Your son could try diary-free for a while and then add it back in to see if it helped being df or not. But it is hard and limits the diet more, so you could also wait and see.

    We used Earth Balance for butter substitute and I use it in baking. I'm a butter snob but I even like it in cake frosting and can't tell the difference. He loves my carrot cake recipe.

    Let me know if you need recepies or brown-bag lunch ideas.

  5. Thank you for all of the information and advise. Much appreciated. Because my initial concern (since he really had no conclusive outward symptoms) was his slow growth, I am really hesitant to go back onto gluten UNTIL he has a chance to grow. He's at a really critical point in his social development and his size is causing him a great deal of distress. He is completely on board with trying whatever we can to get healthier and, hopefully, get taller. So, he really has been a breeze to convince that gluten free is the way to go. However, I totally agree that he may be less cooperative in his later teens :( At which time, provided he has shown some decent catch up growth, I would be willing to start him back up on gluten and challenge the test for that conclusive answer that he may need to continue. Hopefully he'll be mature enough to understand the damage he'd be doing and, perhaps, he would develop symptoms that would remind him why we're doing this in the first place...

    That's where I'm at at this point anyways. Hopefully that sounds semi rational ;)

    This does sound rational, if he's on board with staying gluten-free and not cheating.

    My son's story- short version.

    I was diagnosed when he was 14. He was 100th percentile height and 100th percentile weight until he was 5, then fell to 5th percentile weight, 25th height at age 14. He only gained 4 pounds from age 12 to age 15 but the doc would say "Look he gained weight." And they would look at me (5'3") and say "Well he's just destined to be short." But hubby/dad is 6'1", my dad is 6'4" and son has four uncles and an aunt that are taller than 5'11".

    At age 15 he was:

    5'3" 96 pounds

    Zero testosterone (not in puberty at all)

    Bone age 12.3

    Negative on celiac panel, diabetes, thyroid etc.

    He was totally unhappy that he was short and slim. Dad/hubby vetoed endoscopy after negative blood test so son and I agreed that if his gene test was positive for celiac, he would go gluten-free. It was and he did and he went dairy free too. He didn't notice too much improvement right away but he did say that "I didn't realize that eating wasn't supposed to hurt."

    Now at age 19 he is 6'3" and 165 pounds. He TOWERS over his pediatrician that told him he was destined to be short. He only grew about four inches the first year but he was in puberty six months after going gluten-free. Coincidence? We'll never know.

    He went to high school and had two friends in his group (he was in a separate gifted program where they had all classes and activities together) who were celiac or gluten-intolerant and another who was also dairy free so it was a supportive environment. His friends were so helpful - they would pick restaurants for prom and homecoming dinners that were gluten-free (Maggiano's, PFChang's). He's now in college and they have gluten-free dining options in the dorms there and you don't need a doctor's note (big public university - University of Washington). He says he's never cheated.

    Son will eat at places that would make me sick (for example, he'll eat tacos from Taco del Mar where they steam the corn tortillas in the same place as the wheat) but is pretty strict with himself and will send something back in a restaurant if it's prepared wrong. He knows how to read labels. He stocks his dorm with gluten-free canned chili, hot dogs, hardboiled eggs, pre-cooked rice, gluten-free soup.

    He has a microwave and fridge and does just fine.

    I've always told him that once he was grown he could do a gluten challenge but he says he's ok with what he knows now. He does get sick if he eats something that he shouldn't, so that is enough proof for him.

    So, that's one kid's story. I hope your son grows and gets healthy.

  6. AnnJay,

    If it were me, I'd transition to one meal for the family, naturally gluten-free as you have too many intolerances to combine gluten-free and picky eaters. Plus, some day you may start getting cross-contaminated from your kids' cereals or from their gluteny hands and kisses.

    Gluten free goddess has a good number of food intolerances so check out her site for recipies. She also gives good substitution ideas. http://glutenfreegoddess.blogspot.com/2012/10/gluten-free-pumpkin-donuts.html

    When your kids grow out of the "don't mix my food" stage you could look at this gluten-free slow cooker site - she has great family ideas. http://crockpot365.blogspot.com/

    Good luck!

  7. June, I have some suggestions and a question:

    Have you had a full eye exam? Some of your symptoms sound like Fuchs Dystrophy, which is a serious eye disease that causes corneal erosion and eventual blindness without treatment. Some opthomologists aren't experienced enough and may miss it. I advise that you don't take chances and have an MD look at your eyes. You should also have the test for Sjogren's and not just have the doc issue opinions without the test. If it is nothing, the prescription Restasis should prevent further injury.

    Second, if it is Sjogren's, I've read studies that say daily flax seed oil (or in capsule form - not flax seed meal) can give major relief to some people. It certainly can't hurt as it's a healthy oil.

    Hope you get some relief.

  8. Hi CyberProf,

    Smoothies, this actually sounds doable to me. Hubs could whip up a batch in the morning. I'm assuming it would last all day. Would it keep overnight? And what about adding the protein powder to the smoothie instead?

    I will definitely talk to hubs about this.

    I think the smoothie would taste good all day - you might have to stir it. You could try it but after 12 hours it might not taste as good. It wouldn't go bad if it was kept in the fridge. I keep mine in an insulated mug with a straw.

    And yes, I've added protein powder to smoothies no problem.

    Hope it works - good luck and let us know.

  9. Colleen, it looks like lots of people need hugs today. I'm sending you one.

    What about smoothies? It sounds like you have a good DH. He could make it and stick it in the fridge and you could sip a bit here and there.

    Recipe - 1/2 cup strawberries, 1/2 cup mango, 1/2 banana, 1/2 cup yogurt or almond milk or soy milk or sorbet (any flavor but mango would be good). I use frozen strawberries and mango chunks from Trader Joes. There are a lot of other recepies out there or maybe others could suggest.

    You could also add protein powder to almond milk or just with water.

    You could also try premade smoothies (Odwalla, Jamba Juice) or yoplait I think has one. Sometimes they are sold in the frozen food section.

    Have you tried broth-based soups? Home-made are pretty easy. Boil chicken breast in chicken broth/stock until cooked, remove chicken to cool while adding rice to broth. Shred chicken and add to rice. Yum.

    Have you tried hypnosis or a relaxation dvd?

    Hang in there!

  10. My top 3 are:

    Chicken soup

    Mashed potatoes

    Mac n cheese

    Like shadowicewolf, I make chicken soup. I cook chicken pieces in gluten-free chicken broth, then shred it. While I'm shredding the chicken, I add some rice to the broth and perhaps carrots, celery etc. and let the rice cook until ready. Add back the chicken. This is my son's favorite thing to have, but I prefer mashed potatoes for my first meal, then move on to other things. Mashed potatoes are easy and so good on a bad stomach.

    As I feel better I crave Mac n cheese, but it's a lot of work to make from scratch if I'm the one who is sick. I like Amy's frozen macncheese, but it's expensive and has a lot of fat, so it's not always good on a sick stomach.

    I also keep the Thai Kitchen rice noodle soups on hand at work. Spicy things are ok for me and their Thai Curry soup isn't really spicy, so that's what I have sometimes. If you weren't worried about cost, you could toss the spice packet that comes with it and cook the noodles in chicken broth.

  11. What a charming room mate you have there. Imagine how wonderful her other relationships will be. :blink::ph34r:

    I just don't agree with this option:

    I don't care if other people are "happy for me" or not, but I would be damned if I was going to tip toe around being "less effusive" when I find something I can eat, so as to not provoke a sadistic response from such an idiot. My being able to eat something is not taking away one iota from other people's ability to being able to eat the same thing. Our ability to be able to find something to eat in the first place, partially depends on being able to give positive feedback to those establishments that are providing it.

    Takala, I'm not going to argue with you but Intern has options and she can make a choice as to how she wants to handle it. An option would be just to order and eat the food without making a big deal out of it being gluten-free. It's what my daughter (who is gluten-free but doesn't need to be) wants me to do when I'm out to dinner with her. Teenagers are like that and Intern's roommate sounds immature like a teenager.

    There are some people you can change, some you can't. If she has a lease agreement and is stuck with a roommate, she may have to deal with the roommate, unlike a friend that you could avoid or de-friend.

  12. Intern, first your roommate sounds like a mean person, not a friend. You don't have to justify your choices and not being diagnosed doesn't matter in this situation.

    You have several choices on how to deal with this. Ignore, fight back or change your tactics.

    You could talk to her privately and ask that she respect your choices and then ignore her. You could say "I choose to eat this way." instead of "I can't have that." (This was recommended to me as a way to deal with calorie-reduction for weight-loss, to change one's mindset. I find it helpful.) Simply say "I don't eat ice cream cones." or "I am so excited to try the coffee/toffee flavor!"

    You could be less effusive when you find a gluten-free product or food and not expect her to be happy for you. Just take it in stride - it will eventually be "normal" for you. This may be easier than being confrontational. You can get validation here when you find a great gluten-free product or have a good restaurant meal. Or you may find other people who are happy for you.

    If this happens in the future, you could look at her and say something like "Wow, aren't you in a snippy/weird/argumentative mood today?" Or " Please, have what you want to eat and let me have what I want."

    Unfortunately, this won't be the last time that you have to deal with this. Figuring out how to manage it does get easier. Good luck!

  13. I had PF for over two years in both feet at different times. Many PT, MD visits. Was told to wear shoes all-the-time, never went without (wore with pajamas, with bathing suit). Wore supportive running shoes with custom orthotics to work with my business suits - yuk. Wore a night splint for 13 months every.single.night. That got old. Did yoga, toe exercises, iced my arch hours a day. I even wore the night splint on a trip to Europe.

    At around the 14th month, I was diagnosed with celiac disease. The inflammitory process is pretty well known and can lead to things like joint pain, migraines, skin rashes etc. My PF pain lessened when I started the gluten-free diet and about three weeks later, I realized that I was not in pain anymore.

    I will never know for sure, but based on my research I believe that the gluten caused inflammation everywhere in my body and when I went gluten-free it resolved. I did nothing else different. I am still a bit overweight, still trying to walk/run on trails, still lifting weights and doing yoga. I've never had PF pain again and it's been five years.

  14. Sorry about the glutening...happens to us all I think.

    I drink lots of hot peppermint tea, which really helps. Water is important, because a lot of water is lost with Big D, so tea is a good way to get water. The tea is soothing and mint is an herbal remedy for bad stomachs from way back in medieval times. The only thing is that I've heard if you have heartburn, mint makes it worse.

    Also, after the initial Big D, I take a couple doses of Pepto-bismal. It soothes my stomach and makes the episode last a shorter time, or at least that's my experience, and was originally recommended to me by long-time member Ravenwoodglass.

    Some people like ginger tea (I don't like ginger) but that is another old fashioned remedy. If you're on the go, you could drink ginger ale.

  15. nvsmom, I am sorry to hear of your pain. I have no specific experience, but I too had the "suck it up" mentality with docs after being dismissed too many times.

    However, I do know that those potential diseaes - RA especially - are better treated earlier rather than later. So good luck and find a good doc. There are people here who might be able to recommend a good rheumatologist, or find a good RA forum like this gluten forum. Best of luck.

  16. I go to Susan McCormick MD at Virginia Mason. I went to see her after seeing another GI doc at VM who diagnosed me. Since I was only Marsh I, he said that I "didn't have to be strict on the gluten-free diet" since I wasn't showing much GI damage and he also refused to order biopsies for colitis when he was ordering my age 50+ routine colonoscopy.(I wanted to rule out colitis, as celiacs have a higher risk of getting some types of colitis.)

    At VM, the coloscopies and Endoscopies are pot-luck, you get whoever is on that day and that's how I got my first GI doctor. When Dr. McCormick saw me to do the colonoscopy, the first words out of her mouth were "We're going to biopsy for colitis, because with celiac you're at higher risk." I had been planning to ask/plead for it but she beat me to it. So she may not be a specialist but she is aware of celiac and adults. When I saw her for follow-up, she wanted to know my symptoms if I get gluten accidentally and asked other health questions related to celiac (like osteoporosis) and ordered vitamin screening for deficiencies, 5+ years after diagnosis and gluten-free diet.

  17. AGH2010 - what others here may be overlooking is that as a child, your daughter faces a different battle than adults do. Some schools are very picky and do require a doctor's note to do things like put the child at an "allergy-free" table in the cafeteria, provide "safe" food on an overnight outing (very common in 5th and 6th grade) and even some colleges require it.

    Second thing to think about is how awful gluten challenges are for most people on this site.

    Third, if you're going to shop around or skip it, be sure not to go gluten-free until after you shop around because some docs WILL diagnose based on response to diet plus bloods plus perhaps gene testing results.

    Finally, children as they mature can change and become very defiant. If you can't tell your kid that you and docs are 100000% certain that they have celiac, will they cheat (more than) if they are diagnosed? As a parent of college-aged kids, I can tell you that kids development is not always rational. My son went gluten-free at age 15 and without any arm-twisting by me because he wanted to grow (see my signature below) and go into puberty - very strong motivators for any young man. But kids who are gluten-free and don't get symptoms (which happens often to teenagers) may not be compliant.

    My suggestion: Ask your current doc if she will diagnose your daughter as "gluten-intolerant" based on blood tests and response. Some schools may take that note, not really caring that it doesn't say "celiac" (or knowing the difference between gluten-intolerant and celiac).

    There are some docs that diagnose on symptom resolution, blood tests, etc. You may want to post your location on the "Doctor" forum of this board and ask for names.

    In case the above wasn't clear, I do vote for the scope in your case.

  18. Are there percentages for the accuracy of the blood test? What I mean is is the percentage of false negatives high or is it low enough that the blood test can be a somewhat reliable barometer? Of course there are those who the blood test was negative, but the biopsy showed trouble. At the very least the blood test would be a start.

    ETA: One other thing, I do have brief periods of feeling alright, like for a few days I'll realize my head isn't hardly hurting and I feel good, but it always comes right back again with one or a combination of any of these symptoms: (head pain, sinus problems, sore throat/glands, intestine issues, tired weak feeling, sore muscle/joints, tingling novicane feeling in various places, off balance spaced out feeling). These brief periods of feeling ok, can that still happen with celiac undiagnosed?

    If the blood test is postiive, it's unlikely to be wrong - the test has very few false positives. However, if your blood test is negative the reverse is not true. There are often false negatives.

    Yes, celiac can cause periods of bad followed by ok or even good. It is funny that way -not sure if anyone knows why.

    Hope they give you the test without any drama.

  19. I loved bread before and I agree that homemade gluten-free is better than store-bought gluten-free, but I try not to bake too much as I try to eat a paleo diet and because a lot of the time, it doesn't turn out. If I'm going to bake, I make brownies or flourless PB cookies.

    Anyway, I like Rudi's better than Udi's. I don't like it as a sandwich to take somewhere - it has to be toasted and/or hot. It is too dry and crumbly otherwise. I make grilled cheese; toast it for tuna-salad sandwiches; and occasionally make BALTs (bacon, avacado, lettuce, tomato) with toasted bread and sometimes add chicken or turkey lunchmeat.

    I've used it for french toast and I've also made it into french toast breakfast casserole for special occasions like Christmas.

  20. Yeah I have been a member for awhile. I do lurk here from time to time. The thing is I'm not sure if I should just go with the gluten-free diet first, or get the nerve up to try to get tested first, which means convincing my doc. The thing is sometimes my symptoms seem to lighten up so much that they are just about not there (for very brief times like a few days maybe) and I think to myself "oh you're just being silly see? Now you are feeling ok so you're fine", then another round comes again of feeling cruddy that I have to push through. I still have worked through all this never taking a sick day, though I've dragged myself through many times. I keep going back and forth with myself in my head alternating between "really just get friggin tested!" and "don't be dramatic you're fine! Its probably not anything to do with gluten". Ugh.

    Well, I don't suggest lying to your doc, but you could try not minimizing your symptoms. Tell him/her that you feel bad multiple times a day, often feel like missing work but struggle through anyway because you don't want to let your employer down etc. You might have to be insistent. I was undiagnosed for way too long (30+ years)and always told my docs how I felt and was told variations of "you're a hypocondriac" "you just have a sensitive stomach" "you have too much stress in your life" or my personal favorite "you would have no symptoms if you just lost weight." My point is, if they don't agree to test you, put your foot down and if they still won't, then go gluten-free anyway and see if it helps. Good luck!

  21. Nen, some people can see a relationship (pre-diagnosis) between eating and feeling poor. Others, like me, don't a connection: I think most people are in this catagory. Yes, you are right that the body just becomes inflammed and even if it is a non-gluten day, you still feel bad from one or more of the following: Systemic damage to intestines, nerves, brain, joints etc.; the gluten doesn't leave the body in one day -takes 2-3 weeks perhaps; and lastly, low levels of vital nutrients, vitamins and even things like electrolytes etc.

    I see from your signature that you first joined this forum in 2010. Have you ever given gluten-free a true 2-3 month trial to see if it helps?

  22. "views" ...means the number of people who read this post and this site(while surfing the internet)...not necessarily members who are "ignoring you and not responding", okay?

    Those "numbers of views" mean nothing --in terms of people "unwilling to respond"... so, don't take it personally. :)

    I have Double HLA- DQ2 (I am a 2.2, according to my genetic tests--which is a "rare" combo for celiac--about 1%)

    I am a diagnosed celiac and I had dozens of symptoms (my story is well told on here, so I won't bore everyone again) and I was left UnDXed for over 35 years.

    IrishHeart, do you and/or your docs think that your severe symptoms are because of the heterozygos nature of your genes (hah! I wrote jeans first) or because of the 35 years? My genes are homozygous but I was undiagnosed for 30+ years.

  23. ME: Diagnosed by biopsy 2/12/07 Marsh I. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

    Symptoms: gas, intestinal pain, bloating, big D, mouth/canker sores, anxiety, joint and spinal pain, vitamin/mineral malabsorption causing low Vit D, low Vit B and ostopenia and general poor health and early menopause. All the above symptoms gone/relieved. T-scores for osteopenia are improved in five years.

    Son, age 19: Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5)

    Symptoms: Previously delayed growth. 75th percentile height and 75th percentile weight at age 4. 3rd percentile weight, 25th percentile height (5'3") at age 15. Significantly delayed puberty (past age 15). Bone age 12.1 at age 15. Stomach aches, intestinal upsets and general poor health. Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Went gluten-free, casein-free 3/15/08. Now 6'3" (Over six feet!) and doing great.

  24. Can anyone recommend a good gluten-free multi-vitamin? I've tried a few, but keep having bad reactions to them. Even though they say "Gluten Free" on the label, I feel glutened a few hours after taking them.

    Is there any reason why a supposedly gluten-free multi-vitamin would do this? I don't really understand how these supplements work with the body, but I'm pretty sure I don't have any other food allergies/intolerances.


    I use Nature Made.

    When are you taking them? Do you eat/drink something at the same time? I find I can't take vitamins in the morning, no matter what I eat with them (especially ones that contain iron). I take mine at lunch or dinner time and it's much better.