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

Stuck In Gluten Limbo


GravStars

Recommended Posts

GravStars Contributor

So I'm about 6-months gluten free and still not feeling better, still getting these itchy bumps on my arms, legs and abdomen (I'm undiagnosed). I've eliminated Amy's gluten-free meals after reading that some people react to them, and am now trying to avoid ANY product that is likely to be produced in a facility with gluten. But if I'm getting glutened its also likely happening in the kitchen. I don't know what to do. My parents and sister (whom I live with) are fairly messy in the kitchen and no matter how much I wipe up before fixing something I always feel like I'm wading through a mine field when I'm in there. It's not like just a few crumbs here and there to wipe up, but dried food debris all over the stove, flour particles, etc., seemingly omni-present ALL THE TIME (my sister cooks complicated and messy meals every night). I feel like if I have celiac disease, and even if I had an official diagnosis, I'm probably never going to get better as long as I live here. I can ask them to clean up better after themselves, but inevitably they get lazy and apathetic about it and since I don't have an actual diagnosis they probably don't take it too seriously anyway. I am unemployed and without insurance, largely because of how I've felt for so many years (including chronic anxiety and depression). It's really frustrating. How do other people contend with sharing a kitchen with others that are not gluten free? What to do? Any suggestions?


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Well, you really do need to sit down with your family and make them understand your needs. If you have to clean up after them, it puts you at all-the-more risk. Flour can stay aloft for several hours, and by the time it settles down, it could even get into other rooms of the house. This is just one reason why many families decide the go completely gluten-free. Your health is more important than the meal preferences of other family members. They need to be more understanding, and very careful and accommodating.

If you haven't already done so, set aside a special place for your gluten-free foods. A cabinet, drawer, or whatever, so that your foods don't get contaminated. Make sure gluten-filled stuff won't be placed too near or especially above your things. For example, we all know how a box of cereal will have some crumbs and fine powdery stuff at the bottom. If that box is on a shelf above your items, that powder can filter down onto your items. Obviously, your things should be kept in sealed containers, but just opening them can contaminate them, if there happens to be gluten particles on the lid.

The refrigerator can be a minefield of gluten. In many households, the shelves of the fridge are often home to all manner of sticky substances. When this is the case, just placing an item in the fridge can put unknown gunk on the underside of the container. From there, is is easy to transfer it to your hands, counter tops, table, etc. When you pour something with particles on the underside like that, some may even fall off into your food.

If you want to toast some gluten-free bread, you'll need your own toaster/toaster-oven. Check dish detergents/soaps, and never use dish cloths or sponges that are used for family dishes. In fact, the sink can have gluten clinging to the sides if not washed thoroughly enough.

In case you haven't read about it already, things like postage stamps and envelopes have gluten in the glue, so you should use the self-sticking kind, or moisten them with a sponge.

Lastly, do watch out for additional intolerances, such as dairy, soy, corn, nuts, etc. Many on this board don't get appreciable healing until eliminating other things from the diet, most commonly dairy.

GravStars Contributor

Thanks for your response, Rice Guy.

nora-n Rookie

I had to stop baking gluten bread (I was very careful) for hubby since I got ill from the tiny wheat pollution from baking.

I have this skin thing too, and my whole upper torsoon fire as long as I was baking once or twice a week.

It stopped burning after I stopped with the baking and got rid of the flour.

I can also get glutened when handling bread rests at work, or if people mess with cookies or heat up bund in the microwave and carry too close to my nose...

Sofas and other furniture are often full of gluten too.

We use no gluten for dinner here in the house, and noone misses it. We only have bread and buns around and I can tolerate that if they are careful.

By the way, us with DH or suspected DH can bper-sensitive to gluten.

If you manage to get a diagnosis for your DH, it is as good as a celiac diagnosis.

nora

dilettantesteph Collaborator

I can't clean up gluten without getting sick. After a year of trying to manage with a mixed kitchen my family has gone gluten free. I wouldn't even go into your kitchen if I were you. How about buying one of those little dorm fridges to go in your room along with a microwave.

I wouldn't trust your family to be careful enough. My 13 year old daughter was really good about trying to be careful and she is very anal and still it wasn't enough. People who aren't cooperative to begin with will never manage.

It is really hard to deal with this while you are sick. Keep it up and you will get better and get your life back. I'm sorry that your family isn't more supportive.

GravStars Contributor

That's exactly the problem - I don't trust my family to be careful enough. It just ain't gonna happen.

Unfortunately as I am jobless I cannot afford anything like a small fridge. However I have asked for a rice cooker/steamer for Christmas so maybe that will help.

I don't know what else to do right now...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.