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

How Gluten Free Do You Have To Be?


Alisa Marie

Recommended Posts

Alisa Marie Newbie

About 7 months ago I was diagnosed with Celiac's. Of course it took 4 yrs, but once I went gluten free, a lot of the pain and bathroom issues were gone. But now, 7 months later I've developed DH. My house for the most part is gluten free, and I'm exrememly vigilant in what I eat. Is it possible that mere contact with wheat/gluten products can cause my outbreak? THere are somedays I just wish I could be normal like everybody else. I'm so tired of being sick, and just when I think its getting better, something like this comes along. Has anyone else had the same problem?


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



Celiac.com Sponsor (A8-M):



Ridgewalker Contributor

Yup. We have some gluten in our house, too. Hubby eats it. I've found that every once in awhile, I have to do a complete scrub-down of every surface in our kitchen. Gluten seems to sprout legs and walk where it isn't wanted. <_< Pain in the butt, but the scrub-down usually does the trick.

At some point this weekend, I'm going to shampoo hubby's recliner as well... same reason.

ShayFL Enthusiast

Did you change shampoos? Facial cream? Lipstick? Body lotion? Sunscreen? Anything you apply to your body that has gluten could cause this......

home-based-mom Contributor

Gluten free is one of those what my dad used to call "unique and pregnant" situations. Something is unique or it isn't. There is no "sort of." You are either pregnant or you are not.

You are either gluten free or you are not.

If there is gluten in your house then you are not because as Ridgewalker says, "Gluten seems to sprout legs and walk where it isn't wanted." I would follow her suggestion and scrub everything down. Think especially about what gets touched by gluten-eating people after they have eaten and before they wash their hands. Furniture, door knobs and handles, computer mouse and keyboard, remote control, refrigerator and microwave door, etc. Think bathroom surfaces also.

Janessa Rookie

I had something similar happen to me, after about 8 months gluten free and feeling great I started to feeling horrible again similar to getting glutened but a little different. I was not diagnosed with DH but get very itchy when I get glutened and I was itchy, had achy muscles and joints, fatigue, extreme thirst, dizziness, numbness in my arms and other things but no stomach issues.

My doctor thought I might have fibromyalsia or diabetes, but after doing an elimination diet I found out corn was causing all of that, so I would definitely check for gluten getting through then you may want to see if something else is doing this to you.

LuvMoosic4life Collaborator
Gluten free is one of those what my dad used to call "unique and pregnant" situations. Something is unique or it isn't. There is no "sort of." You are either pregnant or you are not.

You are either gluten free or you are not.

If there is gluten in your house then you are not because as Ridgewalker says, "Gluten seems to sprout legs and walk where it isn't wanted." I would follow her suggestion and scrub everything down. Think especially about what gets touched by gluten-eating people after they have eaten and before they wash their hands. Furniture, door knobs and handles, computer mouse and keyboard, remote control, refrigerator and microwave door, etc. Think bathroom surfaces also.

I think about this all the time. and it also makes me mad b/c I have no choice but to live with people since I'm a college student. I know i am not feeling completely 100% because of the cc issue, but I am 90% better than I was when eating gluten. I wash and scrub as much as I can. but there becomes a point where I start getting "OCD" about it. It is impossible to go an entire day without contact with gluten, just like it is impossible to go w/o contact with germs. I have to go about my daily life and cant walk around in a big bubble that wll protect me from the gluten world around us. Even if your house is completely gluten-free, you are still beinging in outside obejects such as groceries that were more than likely in contact with gluten either at check out or on the shelves.....I mean....there is a point where you have to draw the line....at least for me. as long as my cookingware is clean/gluten-free, hands are washed and food that enters my mouth is f, I know I will not suffer the problems I had anywhere near what I experienced before...

Gluten-Free Guy Newbie

I don't see that anyone mentioned two other sources of gluten. As you probably already know, eating out is the most risky thing a celiac can do, whether at a restaurant, the home of family or friends, school, church potlucks, treat days at work, etc. Some restaurants are learning to handle gluten-free. At www.triumphdining.com, you can order "The Essential Gluten-Free Restaurant Guide." It lists gluten-free restaurants by city and state. Often, by talking to the chef, you can find a local restaurant that has or can prepare a gluten-free food for you, but one always worries about how well they understand cross-contamination back in the kitchen With regard to other people's homes, etc., I just take my own food, heat it in the microwave, and enjoy the socializing.

The other source of hidden gluten is prescription and over-the-counter medications. Even when you find one that is gluten-free, manufacturers occasionally change their formulations, so an item that is gluten-free today may not be gluten-free tomorrow. Always check each time you purchase. Call the manufacturer or visit www.glutenfreedrugs.com.

You will find the "CSA Gluten-Free Product Listing" one of the most useful references available. It lists gluten-free foods and other products and it has a glossary of terms to watch for on product labels. You can purchase the book at www.csaceliacs.org for $30. It's published by the Celiac Sprue Association which has several support group chapters across the U.S. While this book is one of the best resources available, it is not fool proof. For example, it may list a product as gluten-free, but after publication, the manufacturer may have changed the formulation to one that contains gluten (this does not happen often, but it does happen). The book is updated periodically.

Good luck. I wish you well. Once you get this figured out, your life will be much better. The important thing is to always be 100% gluten-free.


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



Celiac.com Sponsor (A8-M):



Rook's Mommy Apprentice

My son was doing awesome for about 7 months then started getting rashes again. Turned out the shampoo I was using changed there formula. He was getting glutened in the tub. :huh: So I would check your products.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.