Extreme sensitivity-at my wits’ end

[SCC]

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.

[cyclinglady]

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]

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]

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]

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!  

Edited April 4, 2019 by cyclinglady

[Posterboy]

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]

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,

[apprehensiveengineer]

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]

@Posterboy— take care!  ?