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

By SCC
in Coping with Celiac Disease

Recommended Posts

SCC Newbie
SCC
Posted

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
cyclinglady
Posted

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
Posterboy
Posted
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
SCC
Posted
  • Author

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
cyclinglady
Posted

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
Posterboy
Posted
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
Posterboy
Posted

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
apprehensiveengineer
Posted

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
cyclinglady
Posted

@Posterboy— take care!  ?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,474
    • Most Online (within 30 mins)
      7,748
    Paula ross
    Newest Member
    Paula ross
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mmar
      Refractory Celiac - doctor?

      By Mmar · Posted

      Hello! I have been on a strict gluten-free diet for 20 years after my initial diagnosis, but in July had an endoscopy that showed villous atrophy (but multiple ttgs have all been normal). I have gone through everything in my house to eliminate any gluten and have been eating almost no processed foods, and will be getting a second endoscopy in a month because my GI doctor thinks it could be refractory celiac. She told me that if it’s refractory, I would need to see a “specialist” because she doesn’t know enough.  I live in Philadelphia and the Celiac Center at Jefferson has 0 appointments with any doctors, I keep trying. Does anyone know of either a doctor in Philadelphia that treats refractory celiac or a doctor elsewhere that does virtual appointments to treat refractory? Thank you!
    • knitty kitty
      10 years later, my celiac is progressing

      By knitty kitty · Posted

      @GardeningForHealth, On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods.  It's very restrictive, but it really helps improve gut health.  It's worth the effort for a few weeks or months. Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf Tea contains TANNINS which can inactivate Thiamin resulting in Thiamin deficiency.  Tannins inhibit the absorption of other vitamins and minerals, especially iron. Tannins can inactivate digestive enzymes.  So drink tea between meals.  Choose a tea with lower levels of tannin, like green tea or Oolong tea.  Oolong tea contains amino acid Theanine which reduces inflammation in the digestive tract. Dairy; Rice, any brand, even after washing 3 times Many people develop Lactose intolerance because damaged villi in the intestinal lining of the digestive tract cannot produce the enzyme Lactase needed to digest the sugar in dairy, Lactose.   Many people with Celiac Disease react to the protein Casein the same as they react to the protein Gluten.  This is because both Casein and Gluten, as well as the protein in rice, carry a similar segment of a protein building block chain (33 mer peptide) that triggers the autoimmune response in Celiac Disease.  Basmati rice is less likely to carry this protein chain and may be better tolerated.  Don't wash rice before cooking.  The added vitamins get washed away.  Some of those grains of rice are extruded vitamins.  They dissolved into the cooking water and are reabsorbed into the grains as the rice cooks. Organic catchup, Potatoes; Tomatoes are a member of the Nightshade vegetables which have been shown to increase gastrointestinal permeability and "leaky gut syndrome."  Potatoes, Peppers and Eggplant also belong to the Nightshades, and should be avoided until healed.  Catsup usually is acidic which can be irritating to the digestive system. Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour Often these contain cross contamination with gluten.  @Scott Adams recently posted a new article about this.  Gluten free products are not enriched with vitamins and minerals needed to digest and process them.  They are high in insoluble fiber and saturated fats.  These may also contain microbial transglutaminase, see below. Sausage, Any processed meat These foods contain microbial transglutaminase, a flavor and texture enhancer, called "meat glue" in the food processing industry, which triggers and provokes anti-gluten antibodies to attack the microbial transglutaminase as well as the tissue transglutaminase produced by our own bodies as with Celiac Disease.  We have articles about microbial transglutaminase, too.  Cassava also contains Thiaminase, an enzyme which destroys Thiamin. Cucumbers from a grocery store, but not from my garden, Most apples, Zucchini, Plums Cucumbers, like these other fruits and veggies, contain lots of soluble fiber, pectin, which intestinal bacteria can ferment and then make short chain fatty acids, which are beneficial.  So that's a good thing.  However, commercially produced breeds of veggies and fruits may contain higher levels of pectins than historically home grown varieties.  Excess consumption of pectins can result in gas, bloating and diarrhea.   Bottled spices  There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms. Gluten-free dairy-free ice cream These can cause reactions if one reacts to oats.  Products made from nuts or nut milks may contain high levels of lectins which are hard to digest and can cause all the usual symptoms.   Smoke from a fire; Strong cleaning chemical fumes These contain Sulfites.  Developing a hyperensitivity to Sulfites is possible in Celiac Disease.  We can be low in vitamins and minerals needed to process Sulfites.  I have Hypersensitivity Type Four where the immune system identifies Sulfites as something to be attacked.  Celiac Disease is another Hypersensitivity Type Four disorder. Packaged sweet potato chips; Packaged plantain chips;  Rice; Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour; Gluten-free dairy-free ice cream A High Carbohydrate diet can lead to Small Intestinal Bacterial Overgrowth (SIBO).  Adopting a Paleo diet like the AIP diet is a great way to change your gut biome without using antibiotics which kill off the bad with the good bacteria.  Taking probiotics may not be very effective as long as SIBO bacteria are entrenched in the digestive tract.  You change what you eat and you change what grows inside you.  You starve out the bad SIBO bacteria, repopulate and feed the good ones.  Supplementing with Benfotiamin helps because thiamine has antibacterial properties that keeps the bad bacteria in check and benefits the good bacteria.  Benfotiamin is needed to process all those carbs turning them into energy instead of them turning to fat.   I hope this has been helpful.
    • trents
      New to all of this

      By trents · Posted

      Welcome to the forum @Newhere19! Yes, we have had many forum members that for one reason or another cannot go forward with the confirmation step of the endoscopy with biopsy. Usually it is because they have already been gluten free for a significant period and react so severely to gluten ingestion that they cannot undertake the gluten challenge without endangering their health. But we also have had more than a few who have severe anxiety surrounding the endoscopy itself and cannot bring themselves to go forward with it. May I ask, what was your antibody score or scores, what was the name of the test or tests done and what were the ranges given for normal/negative vs. positive?  What symptoms do you have? What caused you to seek out celiac testing? And to answer your question, many on this forum have had to go forward with the gluten free diet without an official diagnosis for the reasons already stated. You should start seeing symptom improvement within weeks. But realize that achieving a truly free gluten lifestyle is more challenging than most of us realize at the outset. There is a real learning curve involved in order to achieve consistency. That is partly due to the many unexpected places gluten is tucked away in the food supply/supplements/medications and partly because of CC (Cross Contamination) issues. I will offer this primer to get you off to a good start:  
    • Newhere19
      New to all of this

      By Newhere19 · Posted

      I recently had bloodwork done with a GI specialist and was told that I have celiac.. .but they will not confirm the diagnosis without an endoscopy and biopsy. Due to severe trauma I cannot endure the endoscopy and they made it quite clear full sedation is not an option. So now I have to venture forward assuming this is in fact what is causing all of my symptoms. Has anyone else here had the same experience and started the gluten free diet to see if you're really suffering from celiac? If so, how long did you commit before safely saying the results are accurate? My thought was at least three months would be necessary. Much love to everyone ❤️ 
    • trents
      Gluten-Free Foods

      By trents · Posted

×
×
  • Create New...