Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help - Questions


tiff001

Recommended Posts

tiff001 Newbie

Hi, I don't know if I have celiac, because my Dr. has not been open to the idea of testing because I don't have any intestinal symptoms. But a year ago I started getting burning and tingling in my brain, mouth, face, along with mental problems. Mentally I feel like I have autism. I feel really awkward around people and find it hard to communicate. Which is really hard because I am a single mom of 3 girls, 5, 2, and 1. It's been a nightmare and I was 100% healthy before the birth of my 3rd child. It's been frustrating because my doctor says I'm fine. So I've been on my own trying to figure out what's causing all of this.

So, I started a gluten free/casein free diet. I've noticed a little improvement. I've been on the diet for 3 weeks. But I really have some questions.

My kids, they eat gluten all day. It gets in their hair, all over their face, furniture. It's everywhere in our house! What do I do?

I thought about buying paper plates for myself and trying my hardest to keep all gluten particles off my food, but is that even possible?

Is it better to get all the gluten out of the house and put them on the same diet?

Also, I was wondering how small the particles are? Does anyone know? Can they get in through my skin, eyes, nose? Is it like cold germs? I just don't know how radical I need to be to protect myself from the gluten.

I figured out through trial and error that I am VERY sensitive to gluten because when I drank Rice Dream, I got sick, and the amount of gluten in that is so small, that it's actually labeled gluten free.

Thank you so much! I really need help.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



*lee-lee* Enthusiast

can you go see a different doctor, one who doesn't dismiss your concerns because you don't have classic intestinal symptoms? if you are able to get a blood test, you will need to be consuming gluten. once you stop, your body starts to heal and the antibodies start to go down. this will skew the test results.

are you girls symptomatic? maybe you can make your house gluten-free? that way you don't have to worry about cross contamination at home. if the kids aren't having symptoms they can still eat gluten outside the house (babysitters, school, restaurants, etc).

missy'smom Collaborator

Just before I went gluten-free, my son was diagnosed with ADHD and I was sitting in the psychologists office and listening to her eplain the results and it took all the energy I had to concentrate and understand. That along with other things made me think, "is this what my son goes through?" I knew I didn't have ADD but I felt like it. Gluten also makes me emotional-easily angered and hard to control it or sudden breakdown crying like a two year old.

You can put your kids on a mostly gluten-free diet with you. My son, for the first two years I was gluten-free, at the same snacks that I did. I just switched to naturally gluten-free snacks and bought or made others and shared. He didn't mind. A few things he didn't like but most were easily accepted and some loved. Popcorn, gelatin, puddings, cheese, fruit etc. gluten-free chocolate cake mixes are quite good. There are many gluten-free popsicles out there or you can make them with fruit juice and cheap molds(check the dollar stores). They can still have fun, kid food that just happens to be gluten-free. You don't have to announce it or explain, just stop buying the other stuff and confidently give them the new stuff. For a short while we served both gluten-free and reg, pasta but pretty soon we just switched to all gluten-free pasta and just ate it less often and eat more rice and potatoes. I made all our dinners gluten-free right away, with the exception of occasional sepatate bread or pasta. For breakfast you can serve rice chex and Pamela's pancake mix is very good, although not CF. Now that I'm CF and haven't found a CF pancake mix that I like, I make the Pamela's for my son and freeze them. I bought a spray can of dairy-free whipped cream and put it on stuff to make it more fun. If you need more snack or food ideas ask away.

Amyleigh0007 Enthusiast

It's not too hard to have a completely gluten free home. I think it's much easier, actually, to have everyone gluten free. There is only one meal to cook and all food in the home is safe. There is no worry of cross contamination. The kids can get crumbs anywhere and everywhere and you can clean up after them and not have a worry. My one-year-old enjoys the gluten free crackers available and she usually eats the same things we eat for dinner. My son eats much healthier now that he is gluten free. He snacks on string cheese or apples instead of Oreos and Cheese-Its.

MyMississippi Enthusiast

If I were you, I would pursue a diagnosis before I went gluten free or imposed these restrictions on my children. Your life is difficult enough as a single mom with 3 small children without the added burden of living gluten free, if you don't have to. :)

The symptoms you are having could be from or made worse by anxiety --- You might want to google General Anxiety Disorder and see if this could apply. Especially if you have been going thru long standing stressful times---- (which would be typical for a single mom :) )

Gluten molecules are too large to be absorbed into your skin. So don't worry about that.

You need not be afraid of gluten---- you need to explore everything that could be causing your symptoms and perhaps find another MD. :)

I'm not saying you don't have Celiac---- perhaps you do------ but you need to make sure as best you can.

GFinDC Veteran
Hi, I don't know if I have celiac, because my Dr. has not been open to the idea of testing because I don't have any intestinal symptoms. But a year ago I started getting burning and tingling in my brain, mouth, face, along with mental problems. Mentally I feel like I have autism. I feel really awkward around people and find it hard to communicate. Which is really hard because I am a single mom of 3 girls, 5, 2, and 1. It's been a nightmare and I was 100% healthy before the birth of my 3rd child. It's been frustrating because my doctor says I'm fine. So I've been on my own trying to figure out what's causing all of this.

So, I started a gluten free/casein free diet. I've noticed a little improvement. I've been on the diet for 3 weeks. But I really have some questions.

My kids, they eat gluten all day. It gets in their hair, all over their face, furniture. It's everywhere in our house! What do I do?

I thought about buying paper plates for myself and trying my hardest to keep all gluten particles off my food, but is that even possible?

Is it better to get all the gluten out of the house and put them on the same diet?

Why not just get rid of the kids? Oops, not quite socially correct I guess. And I am just kidding! ;) I agree that it is worthwhile getting the testing done, blood work anyway, to know that you are or aren't celiac. The reason I think that is because you have kids, and it is important to know for their sakes if they might inherit the disease. It may not show up in them right away, but could develop later in life. When I say develop later in life, I mean that it could make itself obvious, vs. concealed or silent as they call it, but still present. Silent celiac is a condition where you don't have any overt GI symptoms, but damage is still occurring in your body. And it shows up as a related autoimmune disease at some point. No fun. So, what the hey, get tested or put them up for adoption. There's the ticket! :o Sorry for the ridiculessness of the post, but I read in another thread where men try to fix things rather than listen or share, so this is my attempt to fix your problem. I know it inhales loudly (sux).

Seriously though, get your self tested by a real doctor, read some of the threads on testing so you know what tests to ask for, give yourself a real chance if you are celiac by putting the whole family on a gluten-free diet. It will be easier for you and better for them nutrition-wise. You aren't alone, there are a bunch of us out here in the world (USA), 3 million or so.

I have often felt like you describe, being withdrawn and finding it tough to cope. I suggest heavy drinking, or dairy free chocolate, or both. on a temporary basis at most of course. I think it must be Friday night, my social acceptability meter seems broken! :rolleyes:

tiff001 Newbie

Well I did it yesterday. I threw away every last crumb of gluten in the house, and scrubbed down the kitchen and living room surfaces. I went to the store and bought the kids gluten-free foods. Now I have to make chicken nuggets, cookies, and pancakes. It's so nice to not have to worry about contamination.

I think Jenny McCarthy said her autistic son didn't test positive for a gluten problem, but he still benefited from the diet. So, that's why I'm not too worried about getting a diagnosis. Plus, it won't hurt to go on the diet, and if it works, then I will know.

Thanks for the advise!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jayhawkmom Enthusiast
I was 100% healthy before the birth of my 3rd child.

Wow... I could have (and HAVE) written the same thing!!

Though, I can look back in my life and see that I had "problems" when I was a child, but they disappeared during my teen years and didn't start back up again until, quite literally, 24 hours after my 3rd child was born. I could not eat anything!!

My son was close to a year old when my middle child was dx with Celiac. It was shortly after that I had my testing done.

I don't have all the answers you are looking for.... but wanted to wish you well. My daughter and I are gluten free, my 2 sons and husband are not. Though, they do eat gluten light at home. My house certainly isn't gluten free by any means. However, we take lots of precautions.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,542
    • Most Online (within 30 mins)
      7,748

    Carol Zimmer
    Newest Member
    Carol Zimmer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.