confused about what's happening to me?

[kristen.]

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

[trents]

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.]

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]

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]

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]

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.