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Jaimepsalm63

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About Jaimepsalm63

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  • Gender
    Female
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    music, helping others, caring for the poor, saving innocent beings from bad situations, raising my wonderful kids, home schooling, loving my fantastic husband
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    Colorado

  1. Thanks H****. I'll have my docs look into it. I've been going back and forth with putting weight back on and taking it off. I had the genetic tests done, I just didn't get the results written down for my own file like I should have done. I'll call my GI and ask for those results too.

    Some things are looking up and others down. So it goes.......ho hum.


  2. My oldest son is allergic to All molds (mushrooms in this category), nuts, legumes (which includes as you know peas, peanuts, and beans), corn, soy, oats, garlic, coconut, and cauliflower. I haven't found a website that is awesome like this one. I just make everything by hand and check references in books that I have about what is in each family group before I cook. My youngest son can't have molds or dairy.

    (I'm thankful that my middle son and husband can eat anything!!! I'm not complicated either...I'm on gluten free liquids :rolleyes: )

    If anyone knows of a good website, I will be one of the first people on it.

    Let me know if you find anything out.

    Thanks,

    Jaime


  3. Check other things out. It could be a lot of things and not just Celiac.

    Case in point, I had gastroparesis on top of Celiac, and I have a couple of other autoimmune problems. Don't rule anything out because you limit yourself without knowing why.

    I know I can only do liquids now, but at least I know why I can only do liquids. It's not as frustrating if I can put a name to it. (Today is obviously a good day otherwise I wouldn't say that it's not as frustrating...)

    If you don't know what is going on that is the part that can be maddening. Check it out, even if people say it's rare. Rare means squat if you have it.


  4. I'm the only gluten-free person in the house. I have my own cabinet, take the top shelf in the refrigerator, and the top shelf in the pantry area we have. I have my own oven now (we have a double oven) because the convection oven (has a fan) was blowing gluten all over my gluten-free food. I don't have a toaster because I do my toast in the oven on broil. I can cook multiple things that way. I also have my own flat wear only because the drawer gets crumbs in it...so I have some in my section of my cabinet. I have my own counter top to prepare food too. So, no gluten is allowed near my counter top.

    I have things labeled in the refrigerator when I have left overs. So, this means I have my own set of plastic containers for that purpose. It's less confusing for my kids when they say "Mama's". They know it's mine and not to even ask about it.

    We have the added complexity of having a child allergic to dairy and another allergic to corn, soy, and oats. I'm thankful my middle son and husband can have whatever they would like.

    It is a lot easier just having my own places to put my food (and it's always on top so there is less likely to be cc) than to try and keep it all mixed up. I haven't had a problem with CC after doing it this way. I don't do a lot of baking of the breads, cakes, and such. I'm not much of a bread person anyway.

    I hope this tidbit helps out a bit.

    Jaime


  5. Hey Jbusta88,

    When I first began the gluten free journey I was so frustrated because I felt worse the first 6 month. than I had when I was eating gluten. Don't give up. Every body is different every journey is different. There are common threads with some things and nothing in common on others.

    Do make sure you aren't dealing with CC though. (My husband figured it out...I had a convection oven that I was using for my baking gluten free with the others doing gluten. We now have a double oven so I don't have that issue. I felt better after that switch.)

    This forum will help you out. Ask questions. We've all been there and every question has been asked at one point in time. You should be able to find answers here with a community that won't judge you. Again, we've all been there with joys, sorrows, frustrations, and relief.

    Look at your lotions, shampoos, soaps, everything that comes in contact with you and the space you live in. It gets easier as time goes on to be gluten free and to read labels.

    Take Care,

    Jaime


  6. It would be so helpful is there was at least one place doctors would just study people with Celiac. Of course I dream. I too have not just Celiac, but also gastroparesis (autoimmune), Sjogren's (autoimmune), reynaud's (autoimmune), and now they also suspect lupus???!!! I mean seriously, can some doctor or group of upcoming doctors catch on and actually do research on people like us. I'm willing to volunteer not just to hopefully get some relief for myself, but to help other people so they don't sit there like I was/am for the longest time thinking there must be something psychological (which one doctor suggested to me because I just wanted attention...sure...ugh).

    Mind you I'm fortunate that I have an awesome GI doc. He's the one who listens to all my symptoms and doesn't just concentrate on the stomach complaints (even though that's what is really killing me at this point).

    That's just my two cents. Too bad there aren't med students reading these posts saying..."Wow, these people need me to do something for them". Bummer...


  7. Hey Yasemin,

    Welcome to the forum. It sounds like he's still having gluten from somewhere. You can help him all you want, but it is up to him to make sure he doesn't eat the gluten when you can't see him.

    Make sure everything in the household is gluten free for him. That will help him while he's there, but if he's at work and grabs something that has gluten that is on his shoulders. Sometimes people think that a little bit of gluten won't hurt and then they can't understand why they feel as sick as they do.

    If he is 100% not cheating on the gluten free diet, look at household products like shampoo and toothpaste. Even your lipstick can have gluten and when he kisses you...he's now ingested gluten. If that isn't the problem either...he may be allergic/sensitive to something else. Have him keep a log of everything he eats and drinks as well as how he feels after every meal so you can pin point a pattern (hopefully).

    That is just my two cents. I hope you all figure it out. It stinks feeling sick.


  8. Matty, IMHO you are right on! I know it's overwhelming and almost unbelievable what some of us have as results of the autoimmune problems of Celiac. Sometimes, it's live and learn to really understand what needs to be done in order to feel better.

    I'd like to point out that sometimes it feels strange to feel ok, because people aren't used to it. That is the experience with a friend of mine. I do wish I could say the same. Such is life.

    As to the topic of having "mild Celiac Disease"....I like the analogy that was used earlier, you either have cancer or you don't, you're either pregnant or you aren't, you either have Celiac or you don't.

    Read and learn all you can about Celiac. It is up to you more than your doctor to take care of yourself. You have access to the internet, obviously, so use it and learn.

    I wish you the best.

    J


  9. Hey Coldnight,

    Well, I have gastroparesis (as well as Celiac) so I have the opposite problem in some ways and the same in others. Food doesn't get digested (same), but it sits in my stomach (opposite). I can't have raw veggies (same), because they'll cause a bezoar (like a hairball for a cat) in my stomach and get stuck there (opposite), but I also can't to meat because it sits there for hours (opposite). I don't think gastroparesis is your problem, but make sure with talking to your doctor.

    I have to agree with two lines of thoughts here that I saw though. One, look at the stomach acid issue. You sound as though you aren't digesting your food in your stomach or intestines and it's just going right through you. That's an enzyme issue (I know because I also have that problem...bummer). I was put on HCI by my doctor to help out the pancreas.

    Also the nightshade issue is something to look at. I can't do nightshades without problems. This is either because I can't do nightshades, my gastroparesis and veggies, or my enzyme problem.

    If peppers and salad make you feel bad....tell your doctor. Mine is wanting me to try and get more veggies in. I have to eat it as baby mush (there's a reason those little ones make faces and spit it back out). You need the nutrients from them, but if they aren't even being digested there is a problem going on that needs to be looked at.

    I hope you get better and they can figure it out. It's frustrating when you don't know why things are the way they are and easier to deal with them when you can have an explanation.


  10. Wonka,

    Glad to hear you're better. I hope my post wasn't taken in such a manner that you thought I was talking to you....I wasn't :-)

    I found that some people have a convection oven (has a fan) and they don't understand that the fan in the convection oven is spreading the gluten from the past onto the food of the present. My husband was sweet enough to get me a new oven (double oven) so I wouldn't have this problem.

    I know most people only think of the toaster, which of course is a must buy new one to live, but they forget the other areas of cross contamination. Cutting boards if they are wood or plastic, strainers (all those little holes are impossible to fully clean), silpats (you aren't supposed to "clean" them), and then pet food (yes even pet food has gluten in it if you aren't getting the gluten free kind).

    Lets not forget stuff like lotions, shampoos, conditioners, makeup...every thing that you put on your body. I was having a discussion with a friend of mine who knew of a family where the daughter just got diagnosed, but wasn't getting better. They didn't even think about the above mentioned items. (I'm thankful to say that they have worked on all of those things and the daughter is much better...yea!)

    It makes a huge difference when you aren't getting the cross contamination...at least it did for me. Take care.


  11. For anyone not getting better with the gluten free diet....TALK WITH YOUR DOCTOR!

    The SCD is NOT for everyone. It is some people's opinion on this site and just that....their experiences and opinions. It is not healthy for every person on here. It may do for some, but not others.

    See your doctor and talk to him/her about the Specific Carb Diet BEFORE you put yourself on it. My doctor was horrified I was considering it. It wasn't right for me and he said I would've really caused a lot of pain and damage to my system if I had gone on it.

    I really wish people would put in their posts that it is 100% their opinion about certain things and always say TO SEE THE DOCTOR. If you aren't happy with your doctor....get one you're happy with.

    Telling people to get tested for certain things is one thing....telling them to do a specific diet change without discussing it with a medical professional is another. When you post on here you need to remember that certain people will take your posting as gospel and can hurt themselves with it.

    Sorry for the rant....I'm just sick of seeing this one post in almost every discussion!


  12. Yoekie, I would see a good gastro doc. I know mine saved my life, literally, more than once.

    As for the SCD idea that's been going around...talk to your doctor before starting something like this. I talked to my gastro doc last month and he said it's not a good thing to limit certain foods out of my diet when I didn't need to. The gluten was a given and a must he said. Other things though that this diet promotes was not for me and in fact could have hurt me more if I had done it. I'm glad I spoke with him and saved myself the pain.

    As for an excess of candida, yeast, in the system...this is also something you should talk to your gastro about. If you have a good doc, like mine, they listen to everything that's going on and not just the digestive stuff. Mine told my husband he had a build up of candida, so he's not totally against hearing that possibility. I didn't have it (candida build up) and again going on a diet to try and eliminate something I didn't have a problem with would have made me more sick.

    My point is this, this is a great forum for people to bounce ideas back and forth. It's grand to have a forum that people can get on who have the same gut problems and know you won't feel like an idiot to ask certain questions or make certain statements. I do, however, worry when people keep promoting a certain idea/diet as though they have MEDICAL facts and MEDICAL knowledge when in reality it is based on their own experience and opinion.

    ALWAYS see your doctor before trying anything with your diet. Eliminating gluten, of course, if you have Celiac is a given.


  13. I used to decorate cakes for a living. Yes Fondant is gluten free. It also is a "learned" thing to eat. I think it's too sweet and can't stand the taste. It also hardens within the hour. I'm a butter cream person myself, but you have to make sure that there is nothing added to the butter cream flavor wise that is a grain based flavoring.

    Make sure your friend really understands gluten free. If she is baking the cake in an oven that is convection (has a fan) and normally uses it for "normal" gluten laden cooking....she's going to spread gluten all over your cake. If it is a conventional oven (no fan) there is usually no worry.

    Congrats for your family!!


  14. With the gluten free kitchen, my GI doc told me to watch out for the oven if it's a convection oven. He said the fan will collect gluten and then spread it to my food. We were fortunate enough to afford a double oven....my husband insisted. Every item that goes into a convection oven (not conventional) needs to be covered FULLY to prevent the gluten in the fan from flying out. He's the only doctor who told me about this.

    Look not only into her products of lotions, shampoos, and such....also your husband and your products and your makeup! People who know me don't give me hugs with their hair or face touching me because they know how sensitive I am. I've even had people say I can't shake hands with them because of the lotion they just put on.

    Investigate her appendix too. Don't settle for one doc's opinion if you aren't happy with what you hear. Your dd is counting on you!!

    Please let us know what they find out with your little one.

    I pray she'll find peace and comfort soon. I've been gluten free for over 4 years and still have the constant pain where it doubles me over. My GI doc never said anything about functional abdominal pain.....that's just people trying to get out of figuring it out IMO. I can feel when food is "processing" in my system...and it's not painful....it shouldn't be according to my GI (and I love this guy!!).

    Jaime


  15. 1. Ok, I have to agree that Ener-g white bread is made for the float things that you throw in the pool for the kids to swim after or for the dog as frisbees. I pray the squirrels won't die on my property...or worse yet run after me and bite me with their little rabid lips when they take a bite. (1 loaf bought and used for other things than eating....bleah!)

    Number 2: Quinoa pasta. I used to decorate wedding cakes and help with receptions for weddings. I know how to cook/bake. If you aren't watching this stuff it's mushy almost immediately. When it does that it reminds me of kindergarten paste.

    Number 3: I'm not a fan of nut thins. I know some people are crazy about them, but I hate them! I'm not a nut fan. I have a huge box of it from a retreat (and they kindly gave me the rest of them even though I never touched them....) and no one is wanting to take it off my hands.

    My favorites:

    Pamela's brownies!!!! YUM!!!!!!!!!!!!

    UDI's blueberry muffins (you can get them at participating King Sooper's)

    Pamela's pancake mix

    That's my list of top/bottom 3....


  16. It stinks that your doc did that to you!!

    Here are my two cents though with an official dx. My husband isn't able to get life insurance for me now because of the official dx.

    On the flip side, (even with a dx) I have people telling me they don't believe me and think I'm bringing a lot of trouble (when I went on a church retreat in which I was one of the presenters and I told them they could either have me bring my own food or learn to cook gluten free. They chose the latter because we had 2 candidates on the retreat that needed gluten free too. So a dx didn't help in that area either.

    Plus side, my really good friends, kids, and wonderful hubby know more about their own health by watching me. Several people in my church have come up to me knowing what I have and have asked me for advice because they have the same "symptoms". They've seen the doc I recommended and sure enough...they also have Celiac.

    I'm fortunate to have a GI doc who listens to me. I was suffering with blood in my stool at age 27, several docs said I was too young to have colon problems....he, my awesome doc, did a colonoscopy (against other doctors advice) and I had colon cancer. I tried one of his partners with my Celiac dx (mine was out of the country for a bit) and he told me I couldn't have Celiac because I've only been with my husband and not another man so I didn't catch that STD.....ugh! I stick with my doc now and no one else.

    Find a doc that will listen to you and take the time to do what's needed. My doc is now looking into me having lupus, sjogren's, and scleroderma. He found my gastroparesis last year because he listened to me and did the test for that twice knowing what tests are.

    Don't give up! If all else fails with your relatives and future relatives....just say you have it, but you can't see the GI doc you currently have and need a new one. If they ask why, just say you had a difference of opinion on how to go about handling it.

    Self dx IMO is just as good as the "real deal" and you won't kill yourself ingesting gluten.

    Good luck. At least this forum won't think you're a drama queen. If you are then we all are and proud to be that way to protect our lives.


  17. For those trying to keep up with the subject of difficulty swallowing, I have some news on my end at least. Maybe this can help someone else.

    I saw my awesome GI doc today and he is looking into Sjogren's syndrome. He said I have most of the symptoms of it. He is doing another EDG on the 23rd to make sure it's not an infection or problems with the throat to help confirm it.

    He has suspected scleroderma for a while and said that people with Sjorgren's can have scleroderma as well.

    He did say I had some of the markers for Lupus too, but the blood work is not supporting it at all and he's going to investigate it further with me.

    He also said that some of my lymphnodes are inflamed and shouldn't be. That is another thing we're investigating.

    It may not all be "good" news, but it's news and I'm not crazy! My GI doc always listens to me and ALL the symptoms not just the digestive ones. I encourage everyone to list everything and make sure the doctor listens.


  18. This is a wonderful topic point. Thank you all for the suggestions you've put out there. In our house we have a variety of issues going on. My youngest son can't have dairy or mushrooms. Very simple. My oldest son can't have Corn, Soy, Oats, Garlic, Cauliflower, Tree Nuts, Coconut, or Legumes. At least he can have dairy. I can't have Gluten, Corn, Soy, Oats, Legumes, Potatoes (my husband suggests that I may have a problem with all the nightshades), or any fiber from vegetables and fruits (from the gastroparesis). Luckily, I got the "problem" diet first and the others have learned to cope with what can/can't be done. I'm also thankful that my middle son and husband don't have any issues.

    Thanks again for all that gave info. I'm looking at the sites after this message goes out.

    I love this forum and all the people who "get it"!!!!!!!!!!!!! :D


  19. I have the same problem and it's getting worse.

    I'm seeing my GI doc on Saturday and am going to talk to him more about it.

    We already know the foods I have to stay away from, but when it gets to the point of having problems with something as simple as even distilled water.....um, yea.

    I saw him a few months ago and told him about it. He threw out the possibility of scleroderma in the digestive tract and wants to see me now that it is getting worse. He said it's kind of rare, but with my family history and my personal history...he wouldn't be surprised.

    He said it would fit with the gastroparesis I've been tested and confirmed dx for already and I don't have diabetes which is usually the case for gastroparesis.

    Please keep everyone informed if you find out what's going on with you.

    I think that would be wise for us all to say what we got tested for (the possibilities because they may all be different for everyone) and the results. That way it opens up possibilities for all of us. It's the support group we all need, because we all understand the pain.


  20. I've decided to do plain/lightly salted rice cakes instead of the gluten free bread for "sandwiches" or using them instead of popcorn. (One of my sons can't have corn, soy, or oats while another son can't have dairy...I'm the one who has to be gluten free and can't digest corn at all.) They come in a variety of flavors too if you're looking for that. They are crunchy (which most people love once in a while) and more stable than bread (can use them like a tostada). Big benefit is spending half the price for the same "amount".

    Also, Wal-Mart is great for labeling their generic products gluten free!! Kudos to Wally world!!

    I also get Pamela's choc brownie mix for special occasions only. Talk about something that is rich and very tasty...yum! I use a lot of Pamela's products if I want pancakes, bread, cakes.

    At King Sooper's (If you have one near you and they work with this group), at least here in Colorado...they carry UDI bakery goods. They are also expensive and an occasional treat (I love their blueberry muffins and cinnamon rolls).

    In the Colorado Springs area is a dedicated bakery called Out of the Breadbox, they have breads, cookies, pies, crackers. Very expensive, but worth it for an occasional treat too.

    What stinks is that gluten free food like breads and pastas and such are very expensive, but the alternative is much worse. I usually stick to rice, potatoes, fruits, vegetables, and meats (or at least I did before my gastroparesis got really bad). I saved the specialty items for special occasions.

    Good luck and I hope your little one starts feeling better.

    Jaime


  21. Your doctor sounds very proactive, which is a good thing. Most doctors....ok, the ones I've run into as of late, try to pass everything off to IBS (which makes me want to scream). Go with it. It's better to have the knowledge that these tests can give you instead of not knowing anything. If all else fails, it confirms or rules out how well your diet is going and the healing process.

    Blessings,

    Jaime