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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    3. - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,768
    • Most Online (within 30 mins)
      7,748

    Cora Pifer
    Newest Member
    Cora Pifer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I take both Benfotiamine and TTFD.   You might want to start with the Benfotiamine for a few days and then add in the TTFD.   You can look for NeuroMag (Magnesium Threonate).  A magnesium glycinate is fine, too.  Doctor's Best is a good brand.  Don't take more than 300mg total per day of magnesium or it may have a laxative effect.   Be sure to take the B Complex.  The Benfotiamine and TTFD will need the other B vitamins.  
    • xxnonamexx
      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for men and doesn't have BHT which has shown to cause liver cancer in animals. I was never big with multivitamins as well as doctors I just read when I was first going gluten free to take a multi but I think I will stop them and work on trying the super B Thia and Ben, Mag.  
    • Oliverg
      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
×
×
  • 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.