Recurring Issues

[kelkel1995]

I was diagnosed with celiac disease about five years ago. I'm currently a senior in high school and feel like I've just hit a wall. I have significantly improved from when I was diagnosed but I still have migraines almost constantly and have a hard time eating. I have been very careful not to cross contaminate my food and never eat anything I didn't make without checking the labels. Is it possible that a gluten free diet won't completely solve all of the symptoms? How long does it normally take to feel better?

I signed up for a study by Alvine Pharmaceuticals today to hopefully get some answers and help. It's been really discouraging through the whole process of not knowing and then finally discovering celiac disease. I was hoping to feel better by now. Is there an end in sight?

[mamaw]

Could  you be  getting CC somewhere?  ie:  pet food, not  that  you  eat  it  but  dog's  & cats  love to lick us...bird  's  in the  house?  other members   of the household  eat  gluten?  Do  you  dine out  a lot?  boyfriend/girlfriend   eat  gluten?  Kissing  can make   a  sensitive  celiac  very  ill....toothpaste have  gluten? Has  scratched  utensils at  home, pots & pans, toaster  , wooden or plastic  cutting  boards,  colander & so on  bring  replaced?

Also  as  time  goes  on  the more  some  become  more  sensitive  to  other foods, & things  that   maybe  doesn't  even have  gluten in them... Many  react to corn,  dairy,  rice, tapioca  flour........GMO'S are  another...... Do  you  eat  things  like  Dorito's , chex cereal  large  companies  that  also  produce  wheat  foods?  Do  you  eat  gluten-free  oatmeal?  That  for  many is a no no  even though its  gluten-free..  The  system  just  can't  handle  all the  roughage....

[kareng]

It's possible here is something else going on. Sorry....

What study did you sign up for?

[anti-soprano]

I have not been gluten free as long as you have been, but I have tried the Paleo Autoimmune Protocol recently.  If anything it has been successful in highlighting my sensitivities and giving me the space to see that I react negatively (less negatively than gluten, but still negatively) to other foods.  It is also supposed to help to heal the gut lining.  It isn't easy and the first thing you see is everything you aren't supposed to eat.  But I do believe it has been helpful.  I felt like garbage at first, but slowly I gained back energy.  (not a ringing endorsement, I know!) My sister, who has done a bunch of crazy cleanses, says that the garbage feeling is typical and it is the body releasing all the bad stuff.  Whether that's true or not- I'm not sure.  If you try it, stick to it for 30 days to be sure.

 

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[Nick-incollege]

Hey,

 

What exactly do you look for when you check labels? Do you just read the ingredients, or do you just check to make sure it's actually gluten free? There are a fair amount of foods out there whose ingredients look alright, but they aren't actually gluten-free. (Due to cross contamination in the factory, or cross contamination further down the processing line - for example many times soy is harvested along with wheat, and studies have shown that soy flour can have up to 3,000 ppm of gluten) So, I only eat food that is explicitly labeled gluten-free (not "no gluten ingredients" - food with this label isn't actually required to be gluten free, whereas if you have the words "gluten-free" you have to have passed 20 ppm inspection) or their websites state that they are gluten free. 

 

Foods like nacho doritos, for example, seem to gluten me every time. I used to be in the same place as you - I was "gluten-free" for a year, but still had terrible symptoms - the problem is I was just looking at ingredients and going ahead if I didn't see any mention of wheat. Since checking to make sure my food was actually gluten-free, I've improved almost perfectly.

 

If you already knew all of this, guess I can't be of much help!

[psawyer]

...studies have shown that soy flour can have up to 3,000 ppm of gluten

What studies? Provide your source for that claim, NOW. That is, provide links to multiple studies (more than one, since you used the plural form).

[dilettantesteph]

Peter, he may have read about the same Tricia Thompson study several times.  When I googled it, I came up with several mentions of the 3000 ppm number.  The actual number reported in the study was slightly lower than that, 2925 ppm.

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This was not a gluten-free labelled product.