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

Survived My First Glutening


tea-and-crumpets

Recommended Posts

tea-and-crumpets Explorer

I guess it had to happen sometime, right?

I have been off gluten since 10/10. On Friday afternoon, I went to a local restaurant that offers a gluten-free menu with my sister and some friends. (They ordered off the regular menu.) I'm not really sure what happened -- did I get a crumb of bread from the others at my table? Did my food get contaminated somehow? (I hope not, because they advertise the gluten-free menu pretty widely and it was the middle of the afternoon, so not busy.) I guess I'll never know.

It was weird, because usually, when I have digestive symptoms, they hit within fifteen or thirty minutes of eating. This time I had a bit of a stomach cramp but no real serious need for the washroom for about two hours and then, well, I couldn't come out for a while. I spent the entire weekend pretty much in bed with no energy whatsoever and D on and off. Oddly, though, tonight, about 48 hours after I first got sick, I felt much better and was able to get up and cook dinner, all that.

I can't believe how much better I felt after two weeks without gluten, and how badly I felt when I just got a tiny bit of it. I can't believe I used to feel this way all the time! I had become convinced that I was just lazy when I could barely get out of bed, climb stairs, all that. Now I know it was the gluten.

I'm fairly good now, but I'm having an anxiety/depressive crash. Perhaps this is just a part of it?

All I know is that I'm definitely not tempted to cheat! Not that I was contemplating it, but I really am not now.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

Did you talk with the wait staff about being gluten free, or did you only order off the gluten free menu? Because my first thought would be that they weren't as careful with your food as they should have been.

I've noticed that with restaurants we go to, if we don't give some specifics, like 'use clean gloves with our food please' and 'if you grill this, please put some tinfoil on the grill to keep it from contaminating my food, please' then they assume we are gluten free for reasons that don't need them to be very careful.

Like we're on the fad diet, or we're diabetic so we need low carbs, that sort of thing. We have a great restaurant here that we went to before we had to be gluten-free. They had a gluten-free menu that had as many selections as their normal one, so when we lost gluten, we thought it would be a great place to go. Instead, we found out that they don't treat gluten free foods like they are needed for an allergy/ severe intolerance. There were no practices to prevent cross-contamination. They would use the same knives, the same pans, the same toasters, etc... Very disapointing.

So now, we always make it clear that we are very sensitive to gluten even touching our food, or touching the tools that touch our food, and we will be very ill if that happens. We ask if they can accommodate that, and I'd say maybe 1/4 of the time, at the least, they will admit that they don't think we can eat in their restaurant safely because their gluten-free foods are not that strictly prepared.

Frustrating, but better than getting sick.

And oh man, I know what you mean about not wanting to cheat. When you get a bad reaction - gluten holds NO appeal, eh?

tea-and-crumpets Explorer

Did you talk with the wait staff about being gluten free, or did you only order off the gluten free menu? Because my first thought would be that they weren't as careful with your food as they should have been.

I've noticed that with restaurants we go to, if we don't give some specifics, like 'use clean gloves with our food please' and 'if you grill this, please put some tinfoil on the grill to keep it from contaminating my food, please' then they assume we are gluten free for reasons that don't need them to be very careful.

Like we're on the fad diet, or we're diabetic so we need low carbs, that sort of thing. We have a great restaurant here that we went to before we had to be gluten-free. They had a gluten-free menu that had as many selections as their normal one, so when we lost gluten, we thought it would be a great place to go. Instead, we found out that they don't treat gluten free foods like they are needed for an allergy/ severe intolerance. There were no practices to prevent cross-contamination. They would use the same knives, the same pans, the same toasters, etc... Very disapointing.

So now, we always make it clear that we are very sensitive to gluten even touching our food, or touching the tools that touch our food, and we will be very ill if that happens. We ask if they can accommodate that, and I'd say maybe 1/4 of the time, at the least, they will admit that they don't think we can eat in their restaurant safely because their gluten-free foods are not that strictly prepared.

Frustrating, but better than getting sick.

And oh man, I know what you mean about not wanting to cheat. When you get a bad reaction - gluten holds NO appeal, eh?

I did talk to the waitress about my ordering off the gluten-free menu, telling her I was grateful that I was able to order things there, etc. She said that a lot of people are really happy. I didn't say anything beyond that and that's really my fault -- I am not confident enough yet, I guess. Honestly I would rather eat at home until I'm more stable but I wanted to spend some time with my sister. Next time I'll insist we go somewhere like PF Chang's that has a very clear protocol for gluten free foods.

srall Contributor

My first glutening was after six weeks gluten free. That pretty much clinched the "lifestyle" for me. I really don't think restaurants understand gluten free. I have too many stories, like the salad still coming with croutons or bread on it, saying no dairy then cheese sprinkled on top. Breading on fish...it's really a hassle. I'm glad you had a quick recovery.

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • 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! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.