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 Sensitive Is It Possible To Be?


wartburg03

Recommended Posts

wartburg03 Rookie

I've been gluten free for 3 months, and after having my blood sugar go insane for the first 2 months, I am finally healing and feeling good. A friend stayed with me for 3 days recently and only ate gluten containing foods twice, a sandwich and a hamburger bun. She was really careful to clean up afterward and not share utensils or double-dip into the peanut butter jar. We also ate at the mall food court (but packed our own lunches, my friend eating her wheat bread sandwich across from me. I did touch her ziploc bag briefly), then took a trip to Whole Foods. At the end of the shopping trip I began experiencing some mild gluten symptoms which have continued for 2 days so far. Is it possible for me to be that sensitive to a bread crumb? Could I have touched something at Whole Foods? Was the table at the food court contaminated? I'm new to this gluten free diet, live alone, and have not dared to eat out yet, so I'm not sure how sensitive a person can be or if maybe I did accidentally eat something (but I can't think of anything I ate that was new). Does anyone else react to such minute things?


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

It could be anything, so don't worry if you don't figure out every source.  If I eat in public, I try to wash my hands first and rinse them really well if I have been touching a lot of stuff before sitting down.  And my dear spouse will get extra paper napkins for me to lay out so nothing touches the table, even if it has been cleaned recently.   But you could have been reacting to something you ate at home, also.  It takes a while to figure out all the possible vectors that gluten can sneak in on. 

wartburg03 Rookie

Thanks. The napkins are a good idea. I didn't want to go overboard, but maybe it's worth it if it will keep me from reacting.

dilettantesteph Collaborator

It is possible to be that sensitive.  It can take awhile to figure out your level of sensitivity.  Don't assume the worst.  It is possible to get a crumb somewhere but not see it.  Many celiacs find that they need a gluten free household to avoid accidental gluten contamination, so that could be it.  Or, the table could easily have not been cleaned, or not cleaned well at the food court, and an unseen crumb could have gotten in your food somehow.  We always uses utensils (our own) when eating in public.  Even if you can get your hands well washed, you end up having to touch other things like the door and the chair before you get to touching your food.  

 

I hope that you feel better soon and can avoid this in the future.

wartburg03 Rookie

Thank you. I try and be very mindful, but I can always do better. I have to eat at a restaurant tomorrow for my sister's bachelorette party. I was already planning on bringing my own spices but now I'll bring my own silverware too.

  • 2 weeks later...
lbeehenderson Newbie

I have been gluten free for almost 3 years now and still get symptoms occasionally.  My boyfriend and I have a gluten free house hold but, as a grad student, I sometimes have to eat at school or pass out from lack of food.  Today I have been feeling awful! Distended belly, anxiety, exhaustion, blurred vision, foggy, bloated, faint, sad, etc.  I am always careful about the food I eat but, I guess I am more sensitive than I thought.  

 

How have people figured out their sensitivity level?  I thought I was ok as long as I didn't eat it directly but, who knows now.... 

kareng Grand Master

I have been gluten free for almost 3 years now and still get symptoms occasionally.  My boyfriend and I have a gluten free house hold but, as a grad student, I sometimes have to eat at school or pass out from lack of food.  Today I have been feeling awful! Distended belly, anxiety, exhaustion, blurred vision, foggy, bloated, faint, sad, etc.  I am always careful about the food I eat but, I guess I am more sensitive than I thought.  

 

How have people figured out their sensitivity level?  I thought I was ok as long as I didn't eat it directly but, who knows now.... 

I think most of the Super Sensitives would never eat at a school cafeteria/ food court.

I'm not extra sensitive, but I always make sure I have some safe food with me - a packet of nuts, or pack a lunch


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

One way I knew I was extremely sensitive was when I ate a tiny bite of a gluten-free cookie, just to taste it.  It was from a company that is very responsible, has gluten-free facilities and tests to make sure that their food is under 20 ppm.  That tiny bite made me sick.  That way I knew that if I wanted to eat a whole cookie, it needed to be far under 20 ppm.  I have had this sort of experience many times.

 

I don't think that you need to be all that sensitive to get sick from a food court.  The people working there won't necessarily have good training in food preparation for people with allergies.  From what I have read, you do better at higher end restaurants.  I personally gave up on such things fairly early on due to too many bad experiences.  You would probably be wise to follow Kareng's and carry food with you, or go to carefully vetted places. 

 

I hope you feel better soon.

1desperateladysaved Proficient

I am pondering carrying my own table and chair.  Then I could avoid using picnic tables, but have a nicer place to eat over the summertime.  I have been told by a doctor to eat at home.  My body is being very touchy on me.  Thank God for my car oven and supply of paper utensils in the car and ready!  I bring the food, or shop at the coop for it when I go out.

 

Diana

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,874
    • Most Online (within 30 mins)
      7,748

    Jen J.
    Newest Member
    Jen J.
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.