Bodywide muscle weakness/fatigue

[BNGed8]

Hello All,

I was diagnosed with celiac in June 2021 & all was good after a while on a gluten-free diet besides for the few rabbit holes I went down at times. I was hoping anyone could assist with what they think could be causing a few of my everyday symptoms that has made quality of life not so fun the last year. There are alot of "symptoms" so I will try to list them by body part starting head down. I have been to Gastro, Primary & Rheumatologist who have not found really anything wrong other than a low Vitamin D. Could low Vit D cause a majority of the symptoms below? Or possibly anxiety?

Face/Neck - Jaw & Cheeks start to hurt if eating or laughing for longer than a few seconds. Feels tight most of the time & nothing seems to relieve it. The front of the Neck & Jaw are tender when pressing down on it. I have tongue twitching, but was listed as benign by a neurologist. Tinnitus daily & cannot really taste with tip of tongue, things don't tase the same.

Chest - I get a sharp pain in my chest a lot, which is not really localized. I do feel as if most is from the esophagus as I get pain in the middle of my chest when eating something colder. I ALWAYS feel tired after I eat as well, kind of like it was a workout. Sometimes I get debilitating pain in my chest which I chalk up to gas, but nothing seems to relieve it. This can last for an hour sometimes.

Arms/Legs - I am unable to walk more than a short distance without being out of breath or my legs hurting. Same with my arms, they start to burn if I lift them up for more than 15 seconds. I get pain in my fingers & they have a tremor which was also listed as benign. The tremor does not affect my daily work, just noticeable when sitting still.

Stomach - I have a good amount of abdominal pain mostly daily & bloating. I have not really noticed a pattern in what foods cause it but could also be caused by the occasional cross-contamination. The right upper abdomen seems to be swollen as it pushes out further than the rest. I had an abdominal ultrasound & MRI that showed only a hemangioma on my liver. My gastro said this would not cause symptoms.

Tests I have had done since my diagnosis & results -

Before new symptoms;

EMG - nothing abnormal, ruled out any muscular diseases.

Brain & Upper Spine MRI - nothing abnormal, a little stenosis on the spine

Abdominal Ultrasound - nothing abnormal

Endoscopy - showed signs of GERD & moderate villi damage

bloodwork - Low Vit D - 18.1 ng/mL. VERY HIGH Celiac Markers

After new symptoms (a year ago);

Abdominal Ultrasound/MRI - Hemangioma on liver

bloodwork - Low Vit D - 17.1 ng/mL (normal is above 30, below 20 is defined as a deficiency). Slightly elevated celiac markers

 

Any information is appreciated so I can bring them up to my doctors & I can start living a normal life again. I am scheduling another neurologist and cardiologist as recommended by my Rheumatologist. Side note, I did get a root canal done around when the symptoms first started. My dentist feels it may have to be redone as I am now feeling pressure there.

[GardeningForHealth]

It may be due to the root canal; perhaps you have a bacterial infection going on there. Pressure can indicate an infection. I would go back to the dentist ASAP and get that addressed. Ongoing fatigue symptoms can indicate an ongoing infection. 

[Scott Adams]

It sounds like you're dealing with a lot of frustrating symptoms. Low vitamin D can definitely contribute to fatigue, muscle weakness, and bone pain, which might explain some of what you're experiencing. Anxiety can also manifest physically in various ways, including chest pain, muscle tension, and tremors. However, given the range of symptoms you're describing, it's wise to continue exploring other possibilities with your doctors, especially considering the potential need to revisit your root canal. Keep pushing for answers—you're doing the right thing by seeing specialists and advocating for your health.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[TheFuzz]

Sounds like you are going through a lot of what I went through.  I was ultimalty diagnosed with rheumatoid arthritis and fibromyalgia.  I had most of what you described going on.  One thing that helped was I did a lactose tolerance test(it's one of the few foods you can do a diagnostic test for) and turned out I had a low enzyme activity, lactose intolerant.  I had tried going days without dairy before, but it took a couple weeks to really notice a difference.  So you might want to look into that.  The other thing that finally got rid of most of my stomach and pain issues was being treated for the RA with immune modifying drugs.  I suspect a lot of the issues I felt were from my immune system attacking everything.

I'm still not great, but it seems to be my new life, so I'm trying to deal with it.  But cutting out lactose and treating RA was a big step.  I'd like to find out if other foods are making things worse, but it's so hard to do the food challenges for any length of time when I am already limited on dairy and gluten.

[BNGed8]

I had a full panel ran almost 2 years ago by my Rheumatologist to rule out any other autoimmune issues that she would be dealing with. They all came back negative except a weak Sjogrens marker but she told me it was nothing to worry about as I did not present most symptoms for it. I do have a script to get them all done again which I will be scheduling soon.

The last week I have been experiencing what could possibly be gluten exposure? I have definitely experienced these symptoms before but not all together & for a week straight. I have what feels like a constant pressure headache above my eyebrows & unable to concentrate on much without feeling nauseous. The pressure headache & eye issues have been nonstop even after sleeping. I also have sensitive spots on my skin that kind of feel like a burning sensation when touched, it tends to move around every other day. The reason I feel like it could be gluten related is because I also have been experiencing severe itching around my anus (sorry to be blunt). I saw my primary who couldn't think of a diagnosis so ordered blood work to check for deficiencies.

I have not experienced this feeling for over a week straight or to this magnitude, anyone have any insight on this?

[Scott Adams]

You symptoms could certainly be related to gluten contamination, and for those who are really sensitive it can last days or longer.

This article, and the comments below it, may be helpful: