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Lisa

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Lisa last won the day on December 26 2018

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  1.   On 9/8/2012 at 8:28 PM, MiaT said:

    Hi Everybody -

    My daughter, 8 was diagnosed with Celiac back in April. We just undertook our first compliance ( blood) test. I was told she scored 47 but should be down to 4. She previously had been >100, but we don't know whether this was 507 and we've made great gains or just 101 and we've done just alright.

    I'm wondering if there are some gluten culprits I should be on the look out for that we haven't found yet.

    As soon as I heard that she was Celiac I cleared out the cupboards - but I'm not sure about toiletries. We've changed out her toothpaste, cold medicine, mouthwash...is there anything else I should be looking at??

    We're also wondering about our Trader Joe's balsamic vinegar, which we use almost every night - should we look for a gluten-free version?

    Is there anything else that might have tripped you up with gluten that you hadn't expected? I'm not surprised that my daughter isn't yet where she should be - her stamina hasn't quite returned yet.

    Thank you in advance for any suggestions or tips. Last December my girl was diagnosed with type 1 diabetes and we've done well managing it - now we need to focus on her Celiac.

    All best,

    Mia

    Hello and Welcome!

    Recheck everything that can past her mouth, as in shampoo, vitamins and call the manufacturer for all meds she may need. Keep a food diary.

    Does she have a separate toaster? I don't have a Trader Joes's near me, but it it's just plain Balsamic Vinegar, it should be ok.

    And school? Is she tempted to share food/snacks/lunch. And she needs to wash her hands frequently at school to avoid any contract with leftover crumbs from other kids.

    Glad she is feeling better. Looks like just a few tweaks should put her on the road to full recovery. :)

  2.   On 9/5/2012 at 12:28 AM, Harry said:

    Hi All,

    I'm new here looking for some advice!! my son has just got a + result after 2 week in hospital in his blood tests for celiacs now going for a biopsy he has lost a lot of weight and refused food and fluid he deteriorated quickly and now only weighs 21lb should be 30lb if you follow his growth chart and is so lethargic and seems to have no energy at all wont even stand up or crawl about :( how long does it take before he puts weight back on and starts eating and drinking???? also any advice on meals for a baby that are gluten free would be greatfully appriciated! thanks in advance Mike

    Hi Mike and Welcome!

    I expect you're in the overload mode about now. But, it will be okay. You have found a great place here. Read, read and read some more.

    I would seek out, through your hospital a dietitian who can help you craft your menu. If they are no help, come back here. Stick to well cooked whole foods and no processed foods. Some gluten free breads and pastas can be added.

    I would switch to almond milk, as dairy can be an irritant until healing can happen.

    And Dad, Mom...check yourselves, as the tendency for Celiac Disease is inherited.

    I'm so glad you have an answer and hopes for a speedy recovery. I think you will find it dramatic. :)

  3.   On 9/4/2012 at 7:08 PM, arian said:

    Anyway, heres my question. I haven't eaten ANY gluten in over 2 months, but it's still showing up on the blood test. Does this mean I'm possibly celiac or highly intolerant? For ex. if i was eating gluten everyday for six weeks before the test, would the antibody number be extremely high? thank you!

    I think you're asking that if you ate a full gluten diet, prior to your testing, would your results be more positive? Maybe, maybe not. But, that's not too important. Positive is Positive. :)

    Can you post the type of blood test your allergist recommended and your full results? You have mentioned that you feel better off gluten, that's a piece of the puzzle.

    It's also possible, that although you are certain you were 100% gluten free, that you may not have been. Gluten is very tricky and it hides well. Lotions, shampoos, lipsticks/balm, some meds, shared toasters and dining out can be a real challenge...etc. The learning curve is steep.

  4.   On 9/3/2012 at 2:13 PM, abby03 said:

    I know I've been posting in this section a lot these past few days and I apologize but I was just on the JIF peanut butter website and stumbled upon this in their FAQ's by complete accident:

    "15. Do Jif products contain gluten?

    >> Hide answer

    Jif Peanut Butter and Peanut Butter Spread products* do not contain ingredients derived from gluten; however, these products do not meet our established criteria for a "gluten-free" claim for one or more reasons.

    *Excludes Jif Smooth Sensations Peanut Butter Spread and Jif Snack Nuts, items which have been discontinued.

    It is important to note that the U.S. Food and Drug Administration has not yet defined the term

  5.   On 8/31/2012 at 10:29 PM, jerseyangel said:

    The zucchini one, especially, Lisa. I now make it extra thick in a 13x9" pan, load it up with sausage, olives, more cheese, pepperoni, etc. and we just call it "Pizza Casserole".

    Both of them are very forgiving and you can play with them to suit your taste.

    :rolleyes::rolleyes::rolleyes: YUM!

  6.   On 8/31/2012 at 9:56 PM, jerseyangel said:

    When I was still healing I was off grains for a while. I (and still do sometimes because we like the taste) would make pizza with a meat crust, or a zucchini crust.

    For the meat crust, I would use ground beef and mix with shredded mozzarella cheese, salt and pepper. Press it onto a pizza pan (should be on the thin side) and bake until browned. Pour off any grease and top as you like and put back in the oven until done.

    For the zucchini, the same idea. Shredded zucchini (squeeze out moisture well), shredded cheese, an egg or 2, salt and pepper. Spread onto the bottom of a pizza pan and bake for 20 minutes, add toppings and bake another 30 minutes.

    That sounds wonderful Patti!

  7.   On 8/31/2012 at 12:13 AM, glutenfreecollegekid said:

    I'm in college, which means I don't have too much money and there are not a lot of gluten free options in college either. does anyone have any ideas for lunches that I can bring to school that wont be too expensive?

    Also, I used to be a vegetarian for 10 years, so not too much or too heavy of meat please!

    I'm so hungry.

    Hum...let's see. You could buy corn tortillas and roll up what every you choose, ie. meat, cheese, cucumbers, avocado, hummus, pb&j, egg salad, tuna salad, etc. Make some chex mix and add some dried fruit and nuts.

    Carrots/fruit sticks with Jiff PB to go, cottage cheese and fruit, nuts and dried fruit are all good or make yourself a smoothie. Yoplait Yogurt and my new favorite, Rudi's Cinnamon Raisin Bread with cream cheese sandwich.

    I also want to add that if you have a clinical diagnosis, your college should accommodate your needs. They either should offer you gluten free options or/and supply you with a dedicated area of the cafeteria where you can prepare your own meals. Please do look into that. :)

  8. This should be a great help:

    Open Original Shared Link

    Open Original Shared Link

    Open Original Shared Link

    Here is an example of a letter that can be used to communicate your child’s need to his/her school:

    Dear Sir or Madam:

    I was very pleased to find out that my son Jonathan is in your school this year. I wanted to inform you of his special dietary needs.

    Jonathan has Celiac Disease. This means he cannot eat ANY foods that have the gluten grains wheat, rye, barley, oats or have any of their derivatives in them. Even trace amounts of gluten from crumbs or contact with gluten foods can make him ill. He will not become immediately ill, such as in a severe allergy, and will not need immediate medical treatment, but any gluten will cause him to have a reaction and over time will damage his intestines and cause more health problems.

    His typical reaction will be digestive problems (stomach ache and/or diarrhea); he may be very grumpy. He may also have to go to the restroom suddenly. Please allow him this privilege if he suddenly needs to go. He has never abused this privilege in the past, and I will be happy to meet with you if you feel he is abusing it. We are able to keep his gluten accidents to a minimum, so he shouldn’t have too many times of illness. If it is a bad reaction I will keep him home from school.

    Please contact me if there is to be any parties or special in-class meals (ie: pizza party, etc) and I will send a gluten free alternative for him to eat. He is very aware of his dietary needs, but I feel it is important that you are aware of those needs. The one rule that I have taught him is most important is this: When in doubt, go without. Companies change their ingredients on a regular basis and if there should ever be a question regarding a certain food, I ask that he just avoid it until I can confirm whether or not it is gluten-free.

    Please do not hesitate to contact me if you have any questions. I look forward to sharing this year of my child’s education with you.

    Open Original Shared Link

  9.   On 8/30/2012 at 3:10 PM, parmeisan said:

    I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.

    Since you already have a diagnosis for celiac by positive blood work, a biopsy might be a good thing anyway, in the least, a base line test. And there are other issue to look for with an endo exam, regardless of whether your biopsy is conclusive or not. With any history of digestive issues, I personally think it's a good idea.

  10.   On 8/28/2012 at 10:06 PM, parmeisan said:

    Hi,

    My doctor is, in his own words, "not an expert on Celiac disease". I have no intention of switching doctors because from what I've read, I am far more likely to end up with a worse doctor, not a better one - and I know this guy cares. He's also pretty agreeable so if I go to him with a list of tests I need done or medication that I want, as long as it makes sense, he'll give it to me.

    Is there a reference somewhere that I can give him that will tell him what other things I need to be tested for, what other specialists I should be referred to, etc etc? Bonus points if it's prioritized because he's busy and I doubt he's going to be willing to do everything at once. It will take several 15-minute appointments to get it all done.

    Failing that, you could all just tell me your opinions on what to test for, and I'll try to compile a list from it. :)

    Oh, and I have already tested for iron, magnesium and B12 deficiencies.

    Thanks!

    Since you have already been tested for Celiac - Positive. I would recommend a Full Metabolic Panel, while you wait for your biopsy.

    And as a note, do not go gluten free until you have your biopsy. Use this time to learn all you can as well as learn to read labels. :)

  11.   On 8/26/2012 at 7:55 PM, Ruby said:

    First let me say that I live in Eastern Washington State, and my sister, who was diagnosed almost 4 years ago lives in a small rural town in Eastern Kansas. When I called and told her I had been diagnosed, one of the first things she said regarding eating out is "Don't go to the Olive Garden!" I asked her why, and from her answer I would say their staff has no appropriate training. She said they cooked the gluten free pasta in the SAME WATER as the regular pasta!!!! It was never one of my favorites, and I rarely went there anyway. This has made me very cautious, knowing that having a gluten free menu doesn't necessarily mean anything! Since I have only been diagnosed for 2 months, I am very wary of eating out and haven't been anywhere yet!

    To ease your mind,it's my understanding that the gluten free pasta and sauce is pre packaged in individual proportions and sent directly from the supplier. It's microwaved and placed on to the serving plates. The chance of cross contamination is minimal.

    I have eaten the pasta at Olive Garden many times, but I don't find it particularly good - a bit bland.

  12.   On 8/23/2012 at 11:14 PM, a84c72 said:

    For almost a year now, I've had SEVERE fatigue. There are days when I will sleep 10-12 hours, get up for a few hours, and go back to bed for another 3 (even with a CPAP). I also developed what really appeared as IBS and there were times when it was crazy painful after I ate, but was ok after using the bathroom. My upper abdomen started feeling sore to pressure and I complained "my liver hurts". All tests came back normal.

    I was sent to a gastro for the IBS who decided to do a colonoscopy (and go down through the top, as well). That resulted in a stomach polyp that was benign and I thought everything else was fine until I got a phone call today. The biopsy from the other area the doc took samples from: celiac disease. I have no idea if a biopsy can indicate THAT, but that is what they said. She told me the villa in my intestine were "blunt" which was a flag to the doc.

    UGH. So now I have to do a bunch of blood work.

    This, on top of a recently diagnosed PCOS/insulin resistance along with borderline high cholesterol. While going through the PCOS diagnosis, I was found to be deficient in iron and vitamin D.

    I am 40, a stay at home mother, and scared to pieces. I was afraid before because I sleep SO much and feel it isn't fair to my kids, but now...holy cow. I just wasn't ready for a celiac disease dx on top of an insulin resistance issue.

    I have no idea what to do. I was overwhelmed as it was (and still am) with the insulin issue, but now I have to add into the equation gluten issues??

    I read the "safe" and "unsafe" ingredient lists, but let's be honest: I don't even know what the majority of these ingredients are let alone trying to REMEMBER them when shopping.

    There is a store that has gluten-free items (and expensive at that...we are on one income), but it's not a large section and I honestly feel as though between the PCOS and the gluten factor, I am screwed, for the most part. I mean, I can't eat a plain baked potato with the insulin issues!

    We also do take-out because of schedules and looking at many of these menus......there is like hardly anything to pick from. Subway has NO BREAD that is friendly, although, some of their meats are. Well..what the hell good is meat without the bread?? LOL! I mean...SERIOUSLY!

    So, I am wondering.......how does one deal with the insulin AND the gluten aspect? I read about the type 1 diabetes issues that is on here, but nothing about insulin resistance and/or type 2. :(

    Appreciate any insight!

    Hello and Welcome! I'm sorry it took so long for someone to answer your post. I will try, but I don't know anything about insulin resistant issues, so you might need to edit my post to meet your needs.

    The blood work should not be a big issue. Make sure they do a FULL Celiac (Blood) Panel as you CONTINUE to eat gluten. They should also test your blood for mineral and vitamin deficiencies. Often times we are deficient in B-12 and Folic Acid, which would attribute to your fatigue.

    After that's done, you are free to go gluten free. It can be a difficult transition. But to make it easy, start with fresh foods, meats, fish, rice, potatoes (? for you), fresh veggies and fresh fruits. Make it a rather natural diet and eat simply.

    You can advance when you get a grasp on things. But, the most important thing to do now is to take a DEEP breath and know once you climb this hill...it's all down hill from then. Fatigue and pain will be gone and you will have lots of energy to spend time with your children. :) ...no pills, no surgery, just a better quality of life with just a few "tweeks".

    Spend time with us and take baby steps. A diagnosis is the beginning toward feeling better. ;)

    The following are the celiac specific blood tests:

    Anti-Gliadin (AGA) IgA

    Anti-Gliadin (AGA) IgG

    Anti-Endomysial (EMA) IgA

    Anti-Tissue Transglutaminase (tTG) IgA

    Deamidated Gliadin Peptide (DGP) IgA and IgG

    Total Serum IgA

    Although your Biopsy confirms Celiac Disease, your blood work and positive dietary response can also confirm a diagnosis.

    Welcome to the Club!

  13.   On 8/22/2012 at 1:55 AM, bossley said:

    Does anybody get a dry tongue, What's that all about. Only feels better drinking fizzy bev. Then feels dry again.

    Try some water and a good gluten free diet. You absorb 70% of the needed fluid intake in your small intestines.

    DRINK WATER. :)

  14.   On 8/21/2012 at 1:49 AM, RonSchon said:

    Ugh...

    Just got glutened from 5 Guys.

    I've read so many positive reports, that today I was running errands after work and didn't have any meat thawed at home, and the parking lot to the Grocery was packed, so I decided to go to 5 Guys.

    It was right at 5:30pm, and only a couple of diners and no queue. Good signs... You get undivided attention.

    The shift leader is running the cash register... Another good one.

    I tell him I have celiac disease, it's a severe gluten allergy. Blank stare.

    I should have just turned around right there, but no, I make 2 mistakes... 1) I tried to explain to him how it needed to be handled and 2) I didn't stand there and supervise.

    By the time I finish my burger I'm ballooning right on out.

    I am so upset with myself. It just keeps happening.

    For any Phoenix folks, it was the one at 44th St and Thomas. They do not have any gluten training.

    Maybe Ron, you are exposing yourself to unknown avenues. When I

    walk into a restaurant, I assume 100% responsibility for what I order and what I put into my mouth, especially at a fast food joint, by any name. If I get ill, the blame is mine

    Do you really expect that a fast food restaurant is going to be knowledgeable in gluten free training?

    Here is some information:

    Open Original Shared Link

  15.   On 8/20/2012 at 1:46 AM, TrickJ said:

    I know this thread has been done before...but where do you all eat when you go out to eat? I don't go out often but I'm starting to get tired of going to Eat N Park! Thanks :)

    I'm not a teen Trick, but here is a list of Gluten Free options. Make a copy and keep it with you:

    Open Original Shared Link

    Open Original Shared Link

  16.   On 8/19/2012 at 9:08 PM, GwenO said:

    Hi there. Already intro'd myself in the parents of kids section, but see that this is the place. My 11 year old daughter recently diagnosed. Very ill, hospital etc. Initially thought anorexia, blood and biopsy showed celiac. Baby steps. difficult adjustment for her for sure, but we're making small gains. :)

    Gwen

    Welcome Gwen! You have found a great place to settle in. Read here as much as you can and please feel free to ask any questions.

    It gets better, it really does. :)

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