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HappyMom623

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About HappyMom623

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    Female
  • Interests
    Running half marathons and marathons, reading, music, the beach, being a mom!
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    Maryland

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  1. and we have not completely removed gluten, we've just drastically cut down on it, so at this point, I can't imagine we'd need to go through a whole reintroduction to gluten. She's still eating pasta, and crackers, just a small amount each day. I obviously have no idea if she has it, and other than the diaper issues, she doesn't really act like anything is bothering her. She was constipated long before she was eating solids, but then again who knows if formula have gluten in it? (ugh).

     

    I don't want to take things away from her if it's not necessary, and sometimes I think I project my Celiac on her accidently. It's fine line.

     

    Is it a general rule that anyone that Celiac that has children has their child tested??


  2. How do they do it for kids? The scope? I was not diagnosed that way. My blood results were extremely high and with all my symptoms my doc just diagnosed with that way. I asked him about doing the endoscopy and he said that it was pretty invasive and I should go ahead and go gluten free. I did so, and I felt world's better. I have no doubt that I have it. I know it's different for me as I found out as an adult and didn't have to worry about school and such. I've brought it up to the Ped that I have celiac and that I worry about her but they don't really say much. Should I seek out a better type of doctor?

     

    I just don't know if I want to put her through it at such a young age (14 months) if the results could be yes or no. She's not in school yet, and I take her food to daycare. Are the scopes definitive?


  3. Hey everyone.

     

    First, I have Celiac. I've known since 2012. When my daughter got to the age when she could start eating, she started eating a decent amount of gluten. She has always has issues with her poops, even before she ate solids. They suspected a diary intolerance and put her on soy formula when she was a few weeks old. When we transitioned to whole milk she seemed to get a rash on her face, and was blowing out 3 or more diapers a day so we stopped milk, and went to coconut milk.

     

    In the beginning of starting coconut milk, her poo's (sorry...) calmed down. I started giving her gluten-free snacks here and there, but she still had some gluten. She seemed to start sleeping better (but she's also been teething, and going through a leap..so  not sure if it's related). I've noticed when she does eat gluten things, her diapers look weird and have a really bad smell to them. With me having it, I know her chances are much higher.

     

    I've been moving her towards all gluten free foods, but wondering if this is a bad idea? I want her to be healthy, and not feed her things that are potentially hurting her. What age do they are start testing for this? I know when they are little the results can be here or there.

     

    I guess what I'm asking is OTHER than for testing reason, is there a reason I should not give her gluten-free foods?  Right now I'd call her gluten lite. She might have one thing a day with gluten.

     

    Just so nervous about her having it. I lived until I was in my mid- twenties and didn't know and have all kinds of AI stuff now. Just want the best for her!

     

     


  4. Thanks! I'm sure you are right. I'm probably worrying too much, and I'm going to drop it.

     

    I just have felt SO bad, for so long because doctors wouldn't listen to me about Celiac, and then my thyroid. I was worried that I'd finally get medication and then read that it may not even be safe!!

     

    I just want to do everything I can to feel as best as I can.

     

    Thanks!!


  5. Damn.

     

    Well here's a question.

     

    If the doc sends in my script and it's for a generic Levothyroxine, Am I able to pay out of pocket for the name brand??? Tirosint is the exact same drug, just in liquid from. I don't understand if I can do this or not, but since it's the same exact medicine, I'm not seeing why I couldn't. I'm going to call the pharmacy tonight and see what I can do.


  6. So get this. My doctor's nurse called me back today about concern with Levo not being gluten free and tells me this:

     

    "That if there was gluten in the pill, he is sure that the amount is so small that it would not affect you! But if you have issues with this, you can make another appointment to discuss with us"

     

    WOWWWWWW. So I guess they don't understand Celiac AT ALL. If I'm taking something EVERY day of my life, even a small amount of gluten is going to cause problems.

     

    I'm so frustrated I could cry. Thank god I have an appointment with an Endo in April. Maybe she can put me on Tirosint.


  7. Hello! I am not sure if this is quite the correct place to post this, so let me know.

     

    I was just diagnosed with Hypo/Hashimoto's last week. The doctor put me on 50mcg of Levothyroxine. I did some research on it online and can't find much. I've found some sites that say there are only two brands that ARE gluten free(Lennet and Mova). Mine is made my Mylan. Old searches said that Mylan said they don't use gluten, but I'm nervous that it won't always be Mylan brand when I pick it up? Because it's a generic, I'm sure it can change at any time with the Pharmacy.

     

    I wrote my doctor today to tell him that even after speaking with a pharmacist who couldn't tell me it WAS or WASN'T, that I wanted a new medication. I sent him a list of gluten free thyroid meds I found online. Looks like Tirosint would be a decent one?

     

    Anyway, just wondering if you take Levo and it bothers you, or if you take a different medicine?

     

    thanks !


  8. This has been on my mind since I've been pregnant.

     

    I was diagnosed with Celiac 3 years ago, and now have a 6.5 month old baby girl who is just now delving into solid foods.

     

    What is recommended with babies? Do you feed them regular food and see if they have reactions? My home is a gluten free home and my daughter was obviously never exposed to gluten when I was pregnant with her. I don't want to MAKE her gluten free if she does not have it, but I don't know that I want to buy wheat products too much for the house.

     

    I've already decided that I'm not going to give her any grains (I've read babies digestive system isn't great at dealing with grains until about 18 months) until she's much older and able to tell me when her belly is hurting or having any other problems.

     

    I brought it up to my ped, but they didn't really say much. I want to be proactive and don't want her to live for years of her life in pain like I was!

     

    Anyone out there who had celiac and had a child? How did you handle it?


  9. For me in the beginning, I ate whole foods like meat, veggies, eggs, fruit and cheese (assuming no other allergies). This helped me heal and not have to worry about labels. After that, I bought ONLY from the the gluten free isles in my grocery store. It was more pricey, but it eliminated a lot of worry. 3 years later, and I'm still learning things I can and can't have. Sadly, as much as I like cashews, almost all brands still make me sick. :-(


  10. Everyone else has said it pretty well. I found out in my mid-20's... I know, not my teens, but it was still REALLY hard on me to sit around while everyone ate bread and pies while I couldn't. Believe it or not, it gets a LOT easier.

     

    There are some GREAT alternatives. I've found an awesome pizza from Against The Grain and we eat it all the time. A lot of restaurants can provide you a gluten-free menu as well. Do not be ashamed or embarrassed! This is not your fault. Tell your friends that this is very much like a peanut allergy. Would someone with a severe allergy to peanuts eat them? No. That's how I have to treat it. I just told myself from the beginning "I CAN'T HAVE THIS" and found something I could eat.

     

    ((hugs)) You will get this!! and you will feel SO MUCH BETTER.


  11. Wow! This post sounds a lot like my pre Celiac days.

     

    I got chest pains often, and was even seen by a cardiologist. I was told I had MVP (mitral valve prolapse) but that it should not be painful and they could not figure out where the pain was coming from. It was never found. I also got shingles when I was 24! I was out drinking beer all the time (didn't know I had Celiac) and got them really bad on my neck! No one could understand why someone my age would get shingles.

     

    I also had horrible anxiety. All the time. I went to the doctors for 4 years (after many years of being too young to advocate for myself) and had a lot of tests done but nothing was found. I had x rays of my hands done because they always hurt, I had my thyroid tested (came back borderline but they didn't do anything),told I had IBS, and at the very end before I was dx'ed I was seeing a neurologist for strange nerve pain and tingling in my body and horrible headaches.

     

    I had to TELL my doctor to tell me for celiac, as he just kept telling me how "rare" it was. Like you, my results came back extremely high. I asked about doing a scope/biopsy but my doctor said he thought it was "invasive" and that my blood work was pretty indicative. I started eating gluten-free and felt a lot better within a month or so. I've been gluten free ever since. Since everything changed going gluten-free, I've never regretted not doing the scope. It's pretty obvious that I DO have celiac.

     

    Best of luck~