Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


sandsurfgirl last won the day on January 23 2018

sandsurfgirl had the most liked content!

About sandsurfgirl

  • Rank
    Star Contributor

Profile Information

  • Gender

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Without taking this thread too far off course, I want to say this: You do not need to get gluten free makeup, shampoo and conditioner unless you have a wheat allergy on top of celiac.


    The only thing you need to scrutinize is lip stick and possibly any facial creams that may end up in your mouth that you will swallow.

    I have never seen a toothpaste with gluten in it, BTW


    Read this please




    get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler 


    and welcome to the celiac family!! You're going to be okay. ;)


    Ha ha we have had many go rounds on this topic! For me, I wasn't getting better and my last holdout was my beauty products. If you have short hair, maybe you can get away with it, but long hair just gets it in your mouth. The hair brushes on your face, you push your hair back with your hand and somehow that gluten gets you. Well it does me. My hairdresser has celiac and is usually so careful about products. She used a new spray thingy on me the last appointment. I went home and had awful D and was so sick. Had not been glutened in ages. Sure enough, wheat in her new spray. She didnt read it carefully. I do not have a wheat allergy. When something sprays into the air, it is going to get on your lips and all you need is trace gluten to feel sick.


    When you shower if there is wheat in your hair products you will be surprised at how easily it gets in your mouth as it washes down your face. And it will stay on your hands. Gluten is sticky binding stuff. 


    So... if you are still having symptoms after going gluten free, give the products thing a try. I saw many people on here who were adamant that they did not, needed not, would not change their beauty products, but they were constantly whining about lingering symptoms. I remember one guy in particular, he who will not be named, who was miserable, and complaining every single day about how nothing he did would make him feel better. But he would not, no never, get rid of his favorite wheat containing shampoo. Last I saw him, he was still sick and still loving his soft silky wheat filled hair. 


    Most products won't claim gluten free but the wheat is clearly labeled. It's very easy to spot the word wheat on the label and run for the hills. 


    Redken, Biolage, Enjoy all have many gluten free products. Again it will NOT say this on the label. You need to read. 

    I've never seen gluten in any Bath and Body Works so far.

    Bare Minerals, Benefit and Tarte have many make up options.

    I use H2O Plus on my face and I've never seen gluten in anything in 15 years of using their stuff. I always double check though since they revamp their lines often.

    Be careful with "organic" and "natural" brands. Frequently they are wheat monsters. 

    Suave is good for cheaper stuff. 


    My husband also uses gluten free products. He washes his face and puts on his manly dude lotion. Then I kiss his cheek and whammo... big D, if there is wheat in there. Or he washes his hair with gluten shampoo and conditioner, then lays next to me on the pillow. His hair brushes past my face and there you go... big D again. 


    Unless you are totally free of symptoms, feel amazing and are 100% certain you are doing great in your gut, you are playing with fire using products that contain gluten (just about always in the form of wheat this or that from what I've found.) 


    I don't care what some guide says or a book says. They aren't you. They don't have to spend hours on the toilet with you or deal with the gut pain. Tread carefully with the products because it just might be the difference between better and great for you. Celiacs have been given bad advice from doctors and experts since the dawn of time, so do what you need to do in order to be well. It is worth an hour of your time in an Ulta reading labels or a couple of hours in the aisles at Walmart for your well being. 


    As you can tell this is a passionate issue for me. I want my celiac friends to THRIVE!!! 

  2. I just found out yesterday that I have celiac disease so today is my first official day as gluten free and all I want is a donut lol. So far everyone's comments have been really helpful and encouraging. I had no idea that I need to get gluten free makeup, shampoo, conditioner, etc. It looks like I have a lot of research to do.


    Kinnikckinnick and Katz make great donuts! But don't go there just yet. Let your gut heal. You can have your gluten free donuts in a few weeks or so. 

  3. I remember you too, of course !! and I was thrilled to see you post in your no-nonsense, totally encouraging way on another thread the other day.


    It's always good to read successful healing stories, even for us "veterans".!! ^_^  


    So happy to "see you" , sandsurfgirl....and that all's well with you and your family.


    Now, hand over some ice cream and a cupcake please!!


    Cheers, IH


    Irish Heart! Good to see you! Here's your cupcake and ice cream... you choose the flavor. LOL

  4. hello, sandsurfgirl!   :)


    folks, this is one of the kind souls who held my (virtual) hand when i was first dx'd - she wasn't all 'pardon me but i have a suggestion' lolz  she was like:  you got this!  kick it in the butt!  also, she understood the Importance of Pasta LOLZ   :D  anyways, she (and others) inspired me to give back.


    thank you very much!  thank you for posting and i'm glad you are doing well (pshaw - i knew you would!)   :)


    I remember those days Not me! I'm so glad to see some familiar faces around here. I'm sorry for being MIA. 

  5. I'm glad that you're feeling well on the gluten-free diet! :)


    Could you share your recipe and instructions on how to make a peach cobbler in a dutch oven? That sounds SO good!

    Super simple! Dump 2 cans of canned peaches with juice in the bottom of a greased dutch oven. Then dump your favorite gluten free vanilla or yellow cake mix over it to cover the peaches. I use Gluten Free Pantry. Then cut up one stick of butter into thin slices and arrange them over the cake mix. Bake at 350 covered for about 20 minutes and then start checking it. It can take a long time so keep going in 10 minute intervals.  The butter will all soak in and the top will start to crisp. 

  6. If I could get on my knees and beg you not to move in with him I would. You say it is an otherwise great relationship, but you may be a bit lovestruck and missing some things. At any rate, the things he is doing to you are abuse in my opinion. 


    I don't mean to be harsh but here is how it reads to me. From what I read of what you posted he sounds very controlling, abusive, and narcissistic. Here is an example to give you a comparison. When I found out I had celiac my husband INSISTED the entire house go gluten free. He busted his butt learning about CC, how to handle it and what to do in the house. When he found out our son also had it, he became vigilant. 


    He never ever questioned me about my food. As a matter of fact he will err on the side of caution and if there is something I am willing to eat that HE feels is unsafe, he will ask me not to eat it. HE will ask ME not to make my own self sick because he is so worried about me and it gives him pain to see me suffer. 


    One time he was starving after working a 10 hour day and commuting for 2 hours in traffic. I had not made dinner. Kids and I ate out. So he grabbed a quick teriyaki bowl at a local place and brought it home. My son was crying because teriyaki bowls were his favorite. My husband could not apologize enough and he has never once  brought gluten into our home again.


    Our home is a zero tolerance gluten free zone because of my husband. I was willing to try a shared kitchen and he was adamantly against it. 


    If all he was doing was arguing over the blender I wouldn't think it was that bad. But the man is arguing with you to the point that you feel so incredibly harassed and beaten down that you are eating gluten and making yourself sick in order to avoid a fight with him.

    Do you see how that sounds? Pretend that you are your own mother and you're hearing that some dude is treating your daughter that way. What would you tell her?


    My last piece of advice is don't shack up with anybody. The odds go way up that you will not get married and if you marry your chances of divorce are significantly higher than if you had not shacked up. When you shack up with someone, it's generally because deep down in your core you have doubts about marrying them, so you rationalize that you are saving money, getting to know each other, etc. I have been divorced when I was younger from my first husband (who reminds me A LOT of your boyfriend) and I have broken up with a boyfriend I was living with. Both of them were equally hard and equally traumatic. I wanted to break up with that guy for two long years but because we were livng together I could not extricate myself from him financially. It cost me more money to break up with the live in boyfriend than it did to get my divorce because of how we handled our finances.


    This guy has so many huge red flags, I would run screaming like my hair is on fire and never look back. It will only get worse when you live with him or God forbid marry him.

  7. I used to post here all the time. I don't have time anymore, so I come on once in a great while. I just wanted to share where I am at 5 years into being gluten free as encouragement for the newbies.


    I was diagnosed at the age of 40. Extremely ill at diagnosis. It took me a full 6 months gluten free to have one symptom free day. I had horrible withdrawals from gluten. I highly suggest that newbies use the search function on here and read all the old threads about withdrawals and the healing period so you know it is normal.


    I was so overwhelmed when I found out I had celiac that on my first shopping trip after diagnosis, I had a massive panic attack. I left an entire cart full of groceries in the line at Sprouts, ran to my car hyperventiliating, barely made it home because I felt like I was going to pass out and cried hysterically on my couch for over an hour. 


    But I got used to it. My little boy was diagnosed after me so our whole house went gluten free. I got a gluten-free bread maker and learned to make my own bread. I found plenty of safe restaurants in our area we can eat at.

    I learned to bake cookies and cakes that will knock your socks off. As a matter of fact we went to a campout with some other families. One guy made peach cobbler in his dutch oven, so I made us a gluten-free version in my dutch oven so we wouldn't be left out. A couple of friends tried mine and secretly told me my gluten free on was way better, no comparison.


    My son used to have a hard time feeling left out with snacks and things. I always bring him matching alternatives to what is being served at gatherings and parties. But eventually he came to realize he is healthier because of it and he is happy being gluten free.


    I was intolerant to soy, dairy and night shades at first. Now I eat dairy all the time with zero issues and love my night shades. Soy still gives me a stomach ache so I avoid that one, but it's livable. 


    Parties and pot lucks are a bit more difficult for me but they are no longer stressful. My friends have actually started making gluten free stuff for me at get togethers without me even asking.


    I came here to write up a review of a great restaurant that is nearly all gluten free, and then I thought I would like to share with others. I know when I was new to celiac I was a total wreck. I was so sick, so miserable and I felt like I would never get better, that my suffering would never end. I'm Italian and I cried my eyes out over pasta and raviolis. Then I learned how to make gluten free pasta taste amazing. Whatever you are going through now WILL get better. Some of us still have other intolerances like me with soy, but you deal with it and you learn to make things less about food. I am okay going to a party and letting it be about the friends and not about the food. 


    So hang in there newbies! If you feel sick and horrible, pamper yourself. Spend lots of time in bed. REST. SLEEP. Eat clean until your body feels better. Eating clean and going off almost all grains is a gift you can give yourself now. 


    I just ate the most scrumptious homemade gluten free cherry cupcakes with creamy homemade gluten free ice cream. And my tummy is stuffed but it is not sick.


    Blessings to all of you! 


  8. I went to the Story Tavern in Burbank, California today. Best gluten free food I have ever had eating out  hands down. It is owned by a family and one of the family members has celiac disease. They do have some gluten on their menu but very little and they know how to handle CC issues. 


    There was so much good food my kids and I ordered 3 things and shared. Totchos which is Tater Tot nachos. BEST thing ever! Shepherd's pie. gluten-free macaroni and cheese. Chopped veggie salad. 


    It was heavenly. Every single bite. We all left stuffed because we couldn't stop eating such tasty food. 


    They have 3 or 4 gluten free desserts. My kids had root beer floats but we were too full to order the warm apple cobbler or flourless chocolate cake. 


    We live 45 minutes away but it is worth the drive and we will be back. They also have quite a selection of gluten-free beers and ciders, but I don't like beer or cider so I didn't try any. Somebody try those and add to the thread. 

  9. Why does your nutritionist have you on a high protein diet? When you are healing the last thing you need is unnecessary restrictions. You need carbs and grains for energy!!! My nutritionist is a college professor in nutrition and she is against high protein diets for a whole lot of reasons, and for someone who has been sick those reasons are all doubled. No wonder you're so tired. Get off the high protein diet and eat carbs!

    It's too late for a biopsy. You are already gluten free and unless you have zero gluten issues you will get very sick going back on gluten long enough for a biopsy. A biopsy is looking for intestinal damage, which means you have to intentionally cause destruction to your intestines with gluten to get a positive. You have to eat a lot of it for many weeks to do enough damage to show up on those shoddy tests.

    Eat healthy, whole foods, but please eat plenty of carbs to give you energy.

    Healing takes time. It took me 6 months to have one symptom free day. Give it more time.

    People with autoimmune disease (I'm going to assume you have celiac and the test was a false negative), tend to get dehydrated. I needed to replace my electrolytes for several months, I drank good old Gatorade and it helped a ton. I tried other electrolyte supplements and all of them made me sick.

    Hang in there. It will get better.

  10. In N Out is our go to fast food place. They are so careful about allergies, etc. Their fries are gluten free and who can beat those burgers?

    NEVER get their spread on your burger. It is full of crumbs from spreading it on buns and dipping the spatula. I always get no spread and ask for a packet on the side. They have individual packets by the register.

  11. We eat at El Burrito Jr. in Seal Beach quite often and I realized I had never posted about them. It's home cooked food and pretty inexpensive. The best thing is nearly everything on the menu is naturally gluten free. It's a family run place and when I was diagnosed one of the girls there went over the entire menu and ingredients with me. We have never been glutened there in 3 years!

    The chips are safe to eat.

    All the meats and tacos are safe.

    Beans and rice are safe.

    The only gluten containing ingredients are the flour tortillas and the enchilada sauce has flour as a thickener.

    I order the tacos, beans rice, nachos, tostadas.

    Their salsa is safe and they also have a red sauce they put on the tostada that is safe too.

    If you are in the area check it out. It's directly across from the beach.

    Depending on who is working, they may not know what you mean when you say gluten free. Just order the things I put on here, or ask them about flour. That will make more sense. There is no soy sauce in anything.

  12. It would be great if the OP can do a follow up post. Following up is very important to help others in our celiac community.

    We went there a year ago and we did not get CC'd. I spoke to the manager at the hamburger place and told them our "allergy" (I always say allergy so they take it seriously) is severe and that we will get very sick if our food isn't handled carefully. They have a gluten free bun. It didn't taste good at all, but it was edible and filling.

    The gluten free options are primarily junk food. At Disneyland they have a ton of healthy options including salmon salad and things like that. Legoland is pretty much burgers and fries. They do have a gluten free pasta but that would scare me in terms of CC so I wouldn't eat that. They also have the barbecued chicken with no sauce but of course the salad is wilted iceberg lettuce.

    So basically you will eat food there that will fill you up but it's not exactly going to be healthy or taste all that great.

    The apple fries are gluten free and those are YUMMY!

  13. As a formerly paid Chef, I will also ensure that I bring something other than a smelly sandwich to prevent turning other guest's stomachs :lol:;) and will do my best to keep my cupcake dessert more simple so as to avoid out-shining the wedding cake. B)

    LOL! That smelly sandwich comment made me laugh. Who would bring a smelly sandwich anywhere?

    If you don't trust them, then just bring your own food. Find some sort of carrying case that can be disguised and eat discreetly. I've done it plenty of times at potlucks where I didn't feel like risking it. People are busy with their own thing. They aren't paying that much attention. If you feel really weird eating your own food at the table, excuse yourself and eat somewhere else really quick.

    I will often match what everyone else is eating and then just sneak mine onto a plate. Kids birthday parties for instance. If they serve pizza I will bring gluten free pizza and put it on a plate quietly. Nobody knows the difference and really they don't care. We had a scouts function where they brought in food from a teriyaki place. Nothing was gluten free or safe. I brought my own teriyaki chicken made with wheat free soy sauce. It looked so similar people didn't even know we were eating something different.

    If you make something like a thick stew or chili (not smelly of course) you can keep it in a wide mouthed thermos. It will stay hot for hours and hours.

    I would never eat at home and then starve at the event or come late to the event because I have celiac. No way would I miss out on the fun and I wouldn't do that to the bride. When someone invites you to a wedding it's rude to show up late and not attend the entire thing.

  14. When I was waitress, we would get hungry because the shifts are long with no breaks. The servers at every restaurant I worked at would grab a crouton, dip it in the vat of salad dressing and eat it as a snack.

    I had forgotten about this until recently. So last night I ate at Lucille's from their gluten free menu. I discreetly asked the waitress if they did that with the salad dressing and promised I wouldn't tell on her if she was truthful. And she admitted that yes, they do dip croutons in the dressing.

    So I will be ordering oil and vinegar when eating out, even if they have gluten free dressing options.

    You also have to be careful of spreads like Mayo, etc. because they slather it on the bread and dip the knife back in. Thankfully In N Out has little packets of their spread on the side.

  15. Banquet type facilities always do the best job of accomodating celiac! If I'm going to an event, I don't bother the host, bride, or whatever. I call the facility myself and tell them the event and what my needs are. Then when I arrive, I discreetly ask to speak to whoever is in charge and double check on my meal. I was a bridesmaid in my sister's wedding, got a great gluten free meal and my sister never heard one word about it. Then when the server of my table comes by I also check in about my gluten free meal.

    I do bring back up food just in case something goes wrong. I have a pretty purse that's really a cooler in disguise. For men there are backpacks that are coolers.

    My dad's funeral is Thursday and it's being held at the American Legion. That is one place I'm not comfortable with, so for that I'm bringing food for me and my celiac son. But otherwise, CALL them! They will be happy to take care of you.

  16. I don't want to give advice that will make you feel sick :) but I know myself and personally, I would want the blood test to confirm if the antibodies are present. Given the fact that I can be anxious at times already I would be scared to self-diagnose and and god forbid new symptoms pop up - I would question the diagnosis all over again. I think its at your own comfort level and I'm not sure how bad your GI symptoms are to begin with when you're exposed to gluten, but I know I would personally feel more comfortable with the blood tests being completed. In fact, I'm considering having some gluten next week before my endoscopy just to give me a better chance to have a conclusive diagnosis. But again this is a very personal choice and I dont want to lead you in the wrong direction. I think you need to figure out for yourself how important it is for you to have a conclusive diagnosis. I hope this helps!

    Your signature says you were diagnosed in May. What is the purpose of your endoscopy? If your blood tests were positive then it's a positive. I refused endoscopy after positive blood tests. What is the point of invasive surgical procedures just to confirm what we already know. My son's pediatrician doesn't use endoscopy unless she absolutely feels a need. She diagnoses by blood tests or dietary response. If your bloods were positive and you feel better off of gluten, and you get sick when you eat gluten what more conclusive evidence do you need?

  17. This is the quandary that celiacs face all the time with ignorant doctors. IBS is a junk diagnosis. It's what all of us were diagnosed with. My GI doc told me there was no way I had celiac and it was IBS. He talked me out of testing and I suffered for 8 long years. Then an ER doc told me it was celiac and to get tested. My blood tests were through the roof.

    I don't know what to tell you to do. That doctor sounds like yet another one who doesn't really know celiac. Gluten makes you sick. You have classic celiac symptoms. Why would she say it's not likely celiac? Kickbacks from the drug company to get you to take that IBS drug? A prejudice against celiac diagnosis?

    To get tested you must be eating a ton of gluten. So you have to weigh the benefits versus the risks. Is it that crucial you have an official diagnosis from this doctor? If it is, then you need to eat the gluten, take copious notes to prove it to her and get the blood done. Trouble is, those tests are not that sensitive so you might still come up negative.

  18. Enterolab is promising but as far as I know he still hasn't been peer reviewed has he? It all takes so much time and red tape for studies to be done too. And then there is the American know it all syndrome where we don't always take studies and testing from other countries into account because we think we have to invent everything for it to be valid.

  19. You're in the healing and withdrawal process. It's totally normal. When you first go gluten free your body is healing all that villi damage. I think of it like a huge construction crew rolls out to rebuild and they need raw materials. Your body demands food to fuel it for the job it's about to do. It feels like you're starving and you can't eat enough food no matter how much you eat. It goes away.

    If I get glutened now I am starving until my body repairs the damage.

    It takes awhile to heal. It took me a full 6 months to have one symptom free day. I had noticeable improvements right away but full healing took awhile.

    Eat a healthy, clean diet. Don't start eating gluten free junk foods. Your body needs to heal so it needs good fuel and lots of it. If you're hungry eat.

    Don't be alarmed if all of a sudden a bunch of foods bother you. People sometimes go through a period where everything upsets their stomach. It will pass.

    Make sure you are totally gluten free. Read old threads on here. Post if you have questions. Clean out your kitchen. Replace your toaster. Replace plastics and wooden stuff for cooking. Get a new colander.

  20. Being gluten free is going to help you a lot. So many celiacs suffer from neuro and psych issues. There have been some good studies on it. I had terrible anxiety due to gluten.

    I have a close family member who is bipolar. It's hard to manage but not impossible. You have done something wonderful by going gluten free. She won't even get tested and I'm so certain she has celiac but there's nothing I can do. And you are totally aware of what state you are in. That is huge! Good for you.

    Hang in there and keep posting. This board is a lifeline!

    I come and go now depending on what's going on in my life. I wish I could post all the time but I get busy and disappear. Or I just get overwhelmed from all the sad stories and I need breaks.