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

Is This What Getting "glutened" Feels Like?


amahones

Recommended Posts

amahones Rookie

I have only stopped consuming gluten a little over a month ago. Is it too soon to tell when you've accidentally consumed gluten?

I have been very diligent about my own foods, medications, beauty products, etc.

I do eat generic rice chex - and I've read that some people have problems with Rice Chex in general. This weekend, I bought the real Rice Chex because it was on sale. Immediately after eating it, I was sick: cramping, stomach issues, but also I felt almost drugged, like I couldn't keep my eyes open. I also had a return of some symptoms that had improved: I had a restless sleep, I woke up itching off and on all night (eczema), I had vivid dreams... and when I woke up, I just felt very foggy.

I also had this experience after eating out. It was at Red Robin who told me they had a dedicated fryer for their french fries, and that burgers were prepared in a separate area than buns, etc. All I ate was a burger with pepper jack cheese, no bun ... and french fries. I barely made it home before I was sick (GI again), and had the same symptoms as mentioned before.

I've had other stomach-aches since going gluten-free, but nothing with all these other symptoms. Is there anything else that could cause those weird symptoms?


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Generally speaking, you shouldn't eat processed foods for another few months if you have just started.

I, personally, would not eat genaric chex, as they are probably not made in a dedicated factory like Chex is (which could be the issue here, delayed reaction).

Seems to me either you are A. still getting gluten in somewhere (such as a CC'd toaster) or B. you have yet to fully heal.

amahones Rookie

Generally speaking, you shouldn't eat processed foods for another few months if you have just started.

I, personally, would not eat genaric chex, as they are probably not made in a dedicated factory like Chex is (which could be the issue here, delayed reaction).

Seems to me either you are A. still getting gluten in somewhere (such as a CC'd toaster) or B. you have yet to fully heal.

I do tend to avoid processed foods in general, even before going gluten free.. Rice chex (generic or brand) have been the one exception. I'll cut them out for now, and I'm going to avoid restaurants completely for a while. I don't even use a toaster! (But I do use the same pots that regular pasta has been boiled in. I'm not sure if that could be an issue if the pots go in the dishwasher first?)

shadowicewolf Proficient

What about the strainer? Did you get a new one? GLuten likes to hide in them whether or not its been cleaned.

amahones Rookie

What about the strainer? Did you get a new one? GLuten likes to hide in them whether or not its been cleaned.

I don't actually use the strainer either. For example - my boyfriend will cook pasta in a pot. It will then go into a dishwasher and then I'll use it to make my own chili or something. It's not one of those non-stick pots either, that gets scratched easily. It's stainless steel. I haven't been using any of the ones that scratch because I'm nervous about CC.

shadowicewolf Proficient

I don't actually use the strainer either. For example - my boyfriend will cook pasta in a pot. It will then go into a dishwasher and then I'll use it to make my own chili or something. It's not one of those non-stick pots either, that gets scratched easily. It's stainless steel. I haven't been using any of the ones that scratch because I'm nervous about CC.

what about utincles? Are they wooden, stainless steel, plastic, etc?

amahones Rookie

what about utincles? Are they wooden, stainless steel, plastic, etc?

Hmm...mostly plastic, except for silverware.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

I wouldn't use a pot, or anything that had cooked gluten, without first scouring it with SoftScrub or baking soda. Plates and stuff are probably fine, but cooked on gluten...not so much.

Also, when was the last time the dishwasher was cleaned? There could be all kinds of nasties in the filter.

Plastic is easily scratched - I'd avoid it.

Cutting board?

amahones Rookie

I wouldn't use a pot, or anything that had cooked gluten, without first scouring it with SoftScrub or baking soda. Plates and stuff are probably fine, but cooked on gluten...not so much.

Also, when was the last time the dishwasher was cleaned? There could be all kinds of nasties in the filter.

Plastic is easily scratched - I'd avoid it.

Cutting board?

I'll avoid plastic from now on. We do have a cutting board but I don't use it anymore (and to be honest, I don't think anything except vegetables were ever cut on there). I doubt the dishwasher has ever been cleaned :(

Jestgar Rising Star

I doubt the dishwasher has ever been cleaned :(

Awesome! A fun weekend project for the two of you! :P:D

shadowicewolf Proficient

You guys are scaring me rofl. I'm currently in one of my university's apartments, so do i have to clean the dishwasher too?

I never did with the one in my gluten filled home, but i think the bleach we used to put in it killed it maybe. I didn't get sick with it either O.O

Adalaide Mentor

I haven't used the dishwasher in quite some time. I noticed that my CC pretty much stopped at the same time I stopped using the dishwasher and started also using entirely my own dishes. I can't say for sure which the issue was. Recently the dishwasher broke and my MIL asked if I'd use it if she bought a new one. She pretty much was at the point of begging and pleading with me to use it. (She rather thinks of herself as little miss Martha Stewart and at the time I was sick as a dog and hadn't touched my dishes in like 4 days.) Finally I had to say in no uncertain terms that until I am in my own house and have a dishwasher that I can be in charge of on my own to keep gluten free I won't go near one. I don't trust the things. All those rubber gaskets and such. And have you ever looked in the bottom of one? It's nasty. Nope, won't go near them.

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
      132,871
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    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.