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

Severe Pain? Gluten Or Something Else


AllieB

Recommended Posts

AllieB Newbie

I'm not sure what happened. Yesterday, after having gluten-free yogurt for breakfast, gluten-free crackers for a snack, then a lunch at Noodles with rice noodles, veggies, and shirmp, I had a Caramel from my favorite chocalate shop, no gluten, I had the worst abnomial pain I've had in years. The whole gammit of symptoms came back as bad as they were before I went gluten-free two years ago.

I know that I can tolerate some gluten without noticeable symptoms, because I went almost gluten-free for 2 years before I got a solid diagnosis, and I cheated extensively.

Now I'm 100% gluten-free. So, is this pain (a 5+ on the pain scale) caused by gluten? Or could it be caused by something else, another food intolerance, or by caffeine?

I'd appreiciate any thoughts?

Allie


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

If you ate out for lunch, then your food could have been cross-contaminated with small amounts of gluten. Some Celiacs report that they are much more sensitive after going gluten free.

Lizz7711 Apprentice

My guess is it was a bacterial infection from the restaurant food (shrimp probably). If not that, i'd guess casein sensitivity.

Liz

I'm not sure what happened. Yesterday, after having gluten-free yogurt for breakfast, gluten-free crackers for a snack, then a lunch at Noodles with rice noodles, veggies, and shirmp, I had a Caramel from my favorite chocalate shop, no gluten, I had the worst abnomial pain I've had in years. The whole gammit of symptoms came back as bad as they were before I went gluten-free two years ago.

I know that I can tolerate some gluten without noticeable symptoms, because I went almost gluten-free for 2 years before I got a solid diagnosis, and I cheated extensively.

Now I'm 100% gluten-free. So, is this pain (a 5+ on the pain scale) caused by gluten? Or could it be caused by something else, another food intolerance, or by caffeine?

I'd appreiciate any thoughts?

Allie

curlyfries Contributor

I was gluten-lite for about a year before I went gluten free. And like you, there were things with gluten that I could eat and not have a problem. Going gluten free was so overwhelming to me that I did it in stages. But once I went gluten free, I can't handle ANY gluten exposure.( I thought I would be one of those who didn't have enough of a sensitiviy to worry about CC....WRONG)

BTW, this restaurant you call Noodles... we have a Noodles & Co., which used to be Nothing But Noodles. I went there recently and ordered a gluten free rice noodle dish, and found a regular noodle in it. Of course I didn't eat it, and I thought maybe I would be OK....wrong again :( . I've even felt bad at the grocery store while I was standing near the flour---no joke, I could smell it in the air!

So my point is...my guess is that you have become more sensitive.

Lisa

MDRB Explorer

I was getting 'glutened' from my local noodle place.

I was always ordering rice noodles, but as I later discovered, they were cooking the noodles in chicken stock which contained gluten. It could be something like that, maybe stock or a sauce or seasoning.

Could also be a cross contamination issue.

I also agree with what the other posts have said about increased gluten sensitivity once going gluten free.

Like you, I also went gluten lite before getting a diagnosis. I have found that the severity of my reactions to gluten have increased ten fold since going gluten free.

I hope you feel better soon :)

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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.