Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

confused about what's happening to me?


kristen.

Recommended Posts

kristen. Newbie

hello! I have been diagnosed with IBS around 3 years ago. the doctors never really understood what was going on with me and after may visits and tests this is what they said I had. 

In January 2022 I noticed that after 7pm my body started to shake (mouth, arms, legs). It's more internally but people around me can see it too. It came once in January, then a couple of times in Feb. and now that we are in March it's every night. 

The trembling is usually followed by diarrhea and feeling really tired. I've done a blood test for celiac disease 3 years ago and it came back negative. 

I was told by some people that this might be a food intolerance because this trembling is followed by me having to go to the toilets. So, three days ago I tried to change my diet. The day when i didn't eat wheat my body didn't shake.

What does this mean? I tried talking about my symptoms with a doctor but he said that I've done the blood test 3 years ago so it's probably not celiac disease. I didn't really get enough help the last time I saw one so I found this blog today and I was wondering if anyone ever experienced this symptoms or if you know if this might be a celiac disease? 

Thank you :)


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, Kristen!

When you took the blood test three years ago, were you by chance already trying to eat gluten free? IMO, it would be smart to get another blood test done but you must be eating regular amounts of gluten (equivalent of two slices of wheat bread daily) for 6-8 weeks leading up to the test.

Another distinct possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease and produces many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out by either a blood test or an endoscopy/biopsy of the small bowel or both. In either of these two gluten-related disorders the only antidote at this time is total abstinence from gluten.

 

kristen. Newbie
9 minutes ago, trents said:

Welcome to the forum, Kristen!

When you took the blood test three years ago, were you by chance already trying to eat gluten free? IMO, it would be smart to get another blood test done but you must be eating regular amounts of gluten (equivalent of two slices of wheat bread daily) for 6-8 weeks leading up to the test.

Another distinct possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease and produces many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out by either a blood test or an endoscopy/biopsy of the small bowel or both. In either of these two gluten-related disorders the only antidote at this time is total abstinence from gluten.

 

thank you so much for the welcome!

No, I wasn't trying to eat gluten free 3 years ago. I just tried i for the first time this week :)

Are the tremors, feeling tired, etc. during the evening and nighttime normal for people who have celiac disease or NCGS?

trents Grand Master

No, not trying to eat gluten but trying to eat gluten free. Typo?

Neurological problems are common symptoms of both celiac disease and NCGS. I'm not sure about the evening and nighttime pattern you describe, however.

Gluten is found not only in wheat but barley and rye as well. You say you went without wheat one day and didn't have the tremors and fatigue. My suggestion is to test that hypothesis for several days in a row to see if it was just a fluke. But do remember that if you would go in for testing you would need to be eating regular amounts of gluten for 6-8 weeks pretest.

Wheatwacked Veteran
On 3/16/2022 at 4:55 PM, kristen. said:

I tried talking about my symptoms with a doctor but he said that I've done the blood test 3 years ago so it's probably not celiac disease.

Where have we heard this before?🙃 I think 10 years is the average from complaint to correct diagnosis. It is good to have physical evidence biopsy or blood work but your body is already telling you. Whether you choose to continue eating gluten while waiting for tests or start GFD, vitamins are the key to recovery.

Kate333 Rising Star

Hi Kristen.  I am not a doctor, so cannot diagnose you, but your symptoms remind me of classic physical manifestations of panic/anxiety disorder, certainly understandable during this seemingly endless pandemic. 

I speak from experience.  In my case, I have loose stools, "the shakes" or "chills" (esp. at night when my mind is racing, gripped with uncontrollable fear, catastrophizing thoughts), chronic full body muscle aches, insomnia, and severe exhaustion.   Here is a great website that describes in detail the many ways anxiety and depression can physically affect the body, either acutely or chronically, and tips to control them:  anxietycentre.com. 

Also, you might benefit from a mental health counselor referral for evaluation and a low-dose anti-anxiety/anti-depressant medication. Also, get an updated TTG blood test.  If it's again negative, it's unlikely to be Celiac.  Even if some of your symptoms turn out to be related to celiac disease or gluten intolerance, your emotional health is so important.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,878
    • Most Online (within 30 mins)
      7,748

    Dcecilio
    Newest Member
    Dcecilio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...