Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Extreme sensitivity-at my wits’ end


SCC

Recommended Posts

SCC Newbie

Hi folks, I am desperate for inspiration.  I was diagnosed in 2013 after a lifetime of symptoms.  Anyhow we all know the longer we go without gluten the more severe our reaction is.  For about four years now I haven’t eaten out cause there are no truly gluten free kitchens in my city, only regular restaurants with a gluten-free menu.  I have been cross contaminated by literally every one of them.  I can’t go into a grocery store with a bakery cause the flour in the air does me in.  And now I’m at the point where just being in the same room as someone else eating gluten, even if I touch nothing, makes me ill.  Is that even possible?  I have been washing my hands like a fiend and never touching my face or mouth or putting anything in my mouth that hasn’t been freshly cleaned (like my drinking water bottle for instance).  

The problem is my exposures don’t just cause digestive issues, which they do...but I also have RA and the joint flares are so bad when I get exposed that life literally goes on hold.  I have to stay home cause I can’t get dressed much less pack a lunch or make myself look presentable.

My doctor has told me that I am one of those people who can’t even tolerate one part per million, it seems even the smallest micron does me in, and to treat gluten like a surface virus, assume it’s on everything.  Am I the only one having this many issues?  And no it’s not accidental ingredients.  I make everything from scratch and dont eat anything out of a package.  I eat mainly veggies and a little meat; I recognize that there may be gluten on the produce that I eat though...I wash it but, that doesn’t really help I’m sure.

thanks for listening to me complain and I appreciate the input.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome!  

Have you had a repeat endoscopy since your original diagnosis?  Any repeat blood testing?  That should be done to rule out active celiac disease.  It might be something other than celiac disease.   

 

Posterboy Mentor
9 hours ago, SCC said:

Hi folks, I am desperate for inspiration.  I was diagnosed in 2013 after a lifetime of symptoms.  Anyhow we all know the longer we go without gluten the more severe our reaction is.  For about four years now I haven’t eaten out cause there are no truly gluten free kitchens in my city, only regular restaurants with a gluten-free menu.  I have been cross contaminated by literally every one of them.  I can’t go into a grocery store with a bakery cause the flour in the air does me in.  And now I’m at the point where just being in the same room as someone else eating gluten, even if I touch nothing, makes me ill.  Is that even possible?  I have been washing my hands like a fiend and never touching my face or mouth or putting anything in my mouth that hasn’t been freshly cleaned (like my drinking water bottle for instance).  

The problem is my exposures don’t just cause digestive issues, which they do...but I also have RA and the joint flares are so bad when I get exposed that life literally goes on hold.  I have to stay home cause I can’t get dressed much less pack a lunch or make myself look presentable.

My doctor has told me that I am one of those people who can’t even tolerate one part per million, it seems even the smallest micron does me in, and to treat gluten like a surface virus, assume it’s on everything.  Am I the only one having this many issues?  And no it’s not accidental ingredients.  I make everything from scratch and dont eat anything out of a package.  I eat mainly veggies and a little meat; I recognize that there may be gluten on the produce that I eat though...I wash it but, that doesn’t really help I’m sure.

thanks for listening to me complain and I appreciate the input.

SCC,

Here is some links on RA that might help you.

https://www.ncbi.nlm.nih.gov/pubmed/4001893

https://www.researchgate.net/publication/5366740_Vitamin_K_and_rheumatoid_arthritis

https://www.sciencedirect.com/science/article/pii/S0306987798907927

Also see my posterboy blog post about my experience ...I wrote it for people like yourself still suffering on a gluten free diet....

Treating my stomach acid really helped many of my food protein sensitivity issues.

I hope it is helpful but it is not medical advice.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

SCC Newbie

Thanks for the answers.  There are very specific ways a gluten flare differs from a regular one.  There is no question that they are gluten related.   It’s been a long time since a regular flare.  The RA meds work quite well when they don’t have gluten to compete with.

I have been taking niacinamide 6 times a day for RA for a few years now.  It is fairly helpful for joint inflammation.  So I think we can rule out Pellegra in my case, but thank you for sharing and keep on sharing cause it can surely help someone.

cyclinglady Grand Master

Unfortunately, my gluten reaction varies.  Two years ago, I had a gluten exposure (source unknown), had the flu, a tooth infection, and a cold all within a few weeks.  I was a mess.  My DGP antibodies were off the charts, so we (my GI and I) assumed I was having a celiac flare-up.  Then came the hives every afternoon which lasted for six months.  My allergist attributed that to autoimmune (AI) (and most likely Hashimoto’s) due to increased thyroid antibodies.    Months later, I was still having issues and my GI suggested a repeat endoscopy but I declined.  Instead, I went on the Fasano diet (strict gluten-free diet).  When that did not work, I finally  had the endoscopy which revealed Chronic autoimmune gastritis and a healthy small intestine healed by a gluten free diet.  So, I blamed celiac disease.  I kept thinking I was  somehow getting gluten into my diet, but I was not.  I just had another autoimmune disorder. 

I highly recommend ruling out celiac disease as the culprit.  I was driving myself crazy trying to figure out how gluten was getting into my diet — but it was not.  I was doing a great job on the diet.  

You might have another AI brewing.  Just something to consider.  

And no, just sitting in a room near someone consuming gluten  is not going to trigger a celiac flare-up.  It can contribute to anxiety which is common when AI is flaring.  Flour in the air or plaster dust?  Yes, as if can be swallowed.  I consider myself very sensitive as a gluten exposure can take a month or longer to heal and it does trigger my other AI issues.  They are all linked!  

Posterboy Mentor
4 hours ago, SCC said:

Thanks for the answers.  There are very specific ways a gluten flare differs from a regular one.  There is no question that they are gluten related.   It’s been a long time since a regular flare.  The RA meds work quite well when they don’t have gluten to compete with.

I have been taking niacinamide 6 times a day for RA for a few years now.  It is fairly helpful for joint inflammation.  So I think we can rule out Pellegra in my case, but thank you for sharing and keep on sharing cause it can surely help someone.

SCC,

I would agree with you... that is plenty long enough to make a difference unless you are  taking a PPI then it can it make you low in Magnesium . . .which is often one of the many other culprits for RA.

Here is the usual suspects...I already mentioned Selenium and Vitamin K.

You Vitamin D levels should be checked.... I was low when I was first diagnosed as a Celiac.

See this study of the from the Iowa Women's health study that inversely linked Vitamin D levels in RA patients.

https://www.ncbi.nlm.nih.gov/pubmed/14730601

Your Zinc/copper ratio could be out of wack too.

see this study that analyzed the ratio ....

https://www.ncbi.nlm.nih.gov/pubmed/25869414

taking zinc lozenges orally will restore the proper zinc/copper ratio...one zine lozenge a day until the lozenge(s) become bitter/metalic in your mouth .. . your body self regulates Zinc levels this way ...also you might "stars"/ white spots in your nail bed if you are low in Zinc.

Copper levels have also been linked to hair loss and anemia.

But my go to Mineral is Mangesium Citrate with meals or Magnesium Glycinate if you can't eat and still want to take Magnesium.

I had early on-set Arthritis (creaking/popping joints) in my late 20s and soreness attributed to my weight....seems losing weight is the doctor's only answer...but taking Magnesium Citrate really helped calm my aching joints.... that was 10+ years and after only a few months of Vitamin D catch  up, Zinc Lozenges and Magnesium Citrate supplementation my achy bones are still in good shape. .walking my dog every day helps too!

Here is some research links on magnesium!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3527343/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4633057/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005088/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444049/

I hope this is helpful but it is not medical advice.

Posterboy,

Posterboy Mentor

cyclinglady,

as you may have noticed I have been on the forum less lately...I have been 4-F'ed lately.

http://directionsindentistry.net/4f-unfit-for-service-because-of-teeth/

I have had to spend more time doing farm work, more time with family and friends in the IRL, more time on faith issues and less time on the forum....spring is a tough time to balance all these 4 "F"s.

and dental work (IRL) sooooo I have been dropping the forum ball lately...I just wanted you to know...I am alright ....just in another season on the farm, family, and life right now.

keep up the good work you do here....it helps a lot of people even if you don't ever meet them in IRL. Fall is a much quite(r) time of year for me ..so I might drift back here more regularly when the leafs fall off again or I can find the right forum/faith/farm/family/friends in IRL balance again..not enough time in the day right now for all the "4-F'"s so the forum time drops inversely according to my free time...as other's rise to take it place.

Posterboy,


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



Celiac.com Sponsor (A8-M):



apprehensiveengineer Community Regular

There was a point where I felt like you do, like I was going crazy being contaminated by everything. However, it actually turned out to be issues with some of the foods I was eating. All of these foods were single-ingredient foods that should be low risk in theory. However, anything can be made on a shared line, and may contain warnings are optional. Aside from investigating other issues, you might think very carefully about every food ingredient you use, and perhaps contact manufacturers if you can't find clear allergen info on the company website.

While I wouldn't go out of my way to touch gluten, being around it is fine as long as you wash your hands before touching your face or food, and don't contaminate your utensils/plates with hit. I give the bakery section a wide berth, but most places are set up such that the actual mixing (and loose flour) occurs separate from the customer area if they even bake from scratch at all (a lot of places get frozen dough).

cyclinglady Grand Master

@Posterboy— take care!  ?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,881
    • Most Online (within 30 mins)
      7,748

    Sky Dancer
    Newest Member
    Sky Dancer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...