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

Not celiac but cant tolerate gluten,should I still need to be cautious about cross contamination


mnilo

Recommended Posts

mnilo Newbie

I have hashimotos for more than 5 years.I gave up gluten last year because of my GI issues and it helped. My mom says she tested me for celiac when I was baby , so I guess  I'm not celiac .I gave up only gluten and healed a lot,I didnt get sick since then and don't have brain fog anymore. There are some questions I want to ask ;

I used a gluten containing shampoo last year and it caused itching  on my face and hair scalp.The day after I felt numbness all over my body and couldn't even move my body for  a few minutes.I have never had something like that before.Is it the reason of these symptoms 

I don't buy any products saying it doesn't contain gluten but may have cross contamination.But my mom cooks food with wooden utensils.She doesn't cook any food containing gluten she uses the stuff I bought only and does not use teflon,only uses stainless steel.But probably there's still a little bitt of contamination since we use same kitchen.

I used to not worry about it but loads of websites about autoimmune disorders made me paranoid about it and I just want to cry :( I can't cook my own food because I have no time,preparing for uni exam.

I ate someting with hidden gluten last year and I got too sick and had a very bad diarrhea.

 I used to have eczema when my gluten intolerance started to deteriorate.

I don't wanna test for celiac because I dont want to eat gluten again,I don't like the taste of gluten containing grains and stuff made from them and makes my body sick.Im happy with my new diet.But again I'm asking,do I really need to avoid cross contamination in our kithen?My parents think that cross contamination won't hurt me and get angry when I tell them things like be careful about not spreading breadcrumbs everywhere etc..I don't think that they will change all utensils just for my paranoia 

Also,please,don't tell me I'm on a fad diet . This makes me fell very sad,why should I eat something makes my body can't digest?(Also,all my vitamin and mineral levels are well)

Sorry for my English grammar , thanks :)

 

 

 

 

 


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

Hello and welcome :)

First, a negative test as a baby doesn't mean you don't have celiac. Things change over time. 

However, given you won't be eating gluten again I don't see any point in going down the testing route. You already have your body telling you not to eat it. You react to it, so you're likely either celiac or non celiac gluten sensitive NCGS (like me). Either way you need to avoid it totally.

54 minutes ago, mnilo said:

But again I'm asking,do I really need to avoid cross contamination in our kithen?My parents think that cross contamination won't hurt me and get angry when I tell them things like be careful about not spreading breadcrumbs everywhere etc..I don't think that they will change all utensils just for my paranoia 

Don't be put off by the people who tell you that if you're not a diagnosed celiac you'll be ok with a little bit or can take more risks. You need to take your own decisions. This is what Dr Volta, one of the leading researchers says about NCGS and cross contamination:

Quote

In my opinion, patients with non-celiac gluten sensitivity cannot tolerate gluten and cannot reintroduce gluten in their alimentation. Another important point is that of the small amounts of gluten for these patients represented by contamination in consuming food outside the home, probably, the majority of these patients do not tolerate small amounts of gluten presented by contamination. So, the situation is similar to those with celiac disease, probably not for the possibility of complications or major complications. But, because small amounts of gluten are able to cause the reappearance of symptoms.

So you're right to be concerned, but please don't let concern become paranoia. Take some sensible steps and then relax and enjoy your life. 

Why don't you ask your parents if you can keep your own cutting board, a sieve/colander and some plastic utensils in a separate drawer or cupboard? That would let you prepare food safely? 

Best of luck!

Matt

Ennis-TX Grand Master

Celiac can be dormant for years after birth. It is suggested that children of people with celiac get tested every few years in case the gene becomes active. As for contamination your not paranoid at all. Any CC that makes you sick is proof you need to vigilently avoid it. Quick thoughts, uni ideas, nordicware makes microwave cookware for everything omelette, steamers, grill plates, rice cookers. You can keep your meals simple and use them with dedicated gluten free food mixing bowl etc. Omelettes are a go to staple for me and others. Butcher paper/freezer paper line the counter or table so you do not have to worry about crumbs on the counter use the lined serface as a clean prep area and eating surface

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
      132,875
    • 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.