Mr

[JackElliott]

Hi there, i was diagnosed coeliac and  confirmed via endoscopy last November and have been gluten free since. I have a wide range of symptoms that as yet do not seem to be improving. These include chest pain, racing heartbeat, lower back and left leg pain, tingling, burning/hot sensations, muscle twitches, hypnic jerk at night, cramping tight sensation in my left calf and more. I have had various blood tests and scans that have ruled out other causes but as yet im yet to see much improvement. My endoscopy showed only subtle changes/damage (not sure if severity is relevant to symptoms experienced?) I was wondering if there are any others out there who are/have experienced similar things, and how long it took to feel an improvement? As currently struggling to accept my diagnosis as a cause for how ill it makes me feel without seeing any changes?

I follow a very strict diet as confirmed with a nutritionist avoiding any cross contamination as best as i possibly can.

Any responses would be greatly appreciated 

 

[trents]

Welcome to the forum, Jack!

To me, your symptoms scream of vitamin and mineral deficiencies. I would suggest you start taking a high potency B-complex, B12 (sublingual), 5-10k IU of D3 and magnesium glycinate.

[JackElliott]

25 minutes ago, trents said:

Welcome to the forum, Jack!

To me, your symptoms scream of vitamin and mineral deficiencies. I would suggest you start taking a high potency B-complex, B12 (sublingual), 5-10k IU of D3 and magnesium glycinate.

Thank you for your response 🙂 

I have been on these supplements since the beginning of January (apart from the magnesium) and have had blood tests to check levels at the time. Most were ok other than the vitamin D being at slightly low level but not necessarily a deficiency. Although i do appreciate everyone is different so could be relevant. 
 

would you recommend i have my levels rechecked to see if supplementation is working? Also do you know if it is possible to not be absorbing them well enough if gut potentially still damaged/repairing?

Many thanks

 

 

 

[trents]

Your lower back and left leg pain would most likely be caused by a nerve impingement in your lower spine I should think. Have you had any scans done? DJD and osteopenia/osteroporosis are common with celiac disease.

[JackElliott]

I have had MRI scans and other than some minor wear and tear lower back they came back ok

[Alwiene]

Do you still eat gluten free wheat starch? That might be a problem. Also some of your symptoms make me think of histamin intolerance, you might want to read into that. 

[Russ H]

2 hours ago, JackElliott said:

My endoscopy showed only subtle changes/damage (not sure if severity is relevant to symptoms experienced?

Symptoms vary greatly in range and severity between individuals. It is quite possible to have neuropathy with minor or no damage to the gut. Only about 25% of people with gluten neuropathy exhibit gut damage. Your symptoms sound very much like gluten induced peripheral neuropathy. (This is not a diagnosis).

Quote

Other sensory symptoms include tingling, pins and needles, numbness, tightness, burning, and pain. Motor symptoms include muscle cramps, stiffness, weakness, and wasting [2].

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6024358/

Is this why you were diagnosed? Have you had any nerve conduction studies done?

Recovery from gluten induced neuropathy begins when the coeliac associated antibody levels fall back to the standard range, and this can take some time (most people show a clear clinical improvement by 1 year). If you have been strictly gluten free since November, your antibodies should be coming down now. Maybe it is worth having another blood test to see whether your diet is working. Also a follow-up on your symptoms to see if any other treatment might help.

Stick at the diet. It is a pain but you need to get the antibody levels down and keep them down.

 

[Wheatwacked]

12 hours ago, JackElliott said:

Also do you know if it is possible to not be absorbing them well enough if gut potentially still damaged/repairing?

Yes.

There are about 20 vitamins and minerals that can be deficient due to malabsorption caused by Celiac Disease small intestine damage. There will also be deficiencies caused by foods you avoid.  

• Choline Deficiency Symptoms & Signs
• low energy levels of fatigue.
• memory loss.
• cognitive decline.
• learning disabilities.
• muscle aches.
• nerve damage.
• mood changes or disorders.

Joint pain can result from poor vitamin D levels with low back, hip pain shoulder and rib pain being the most common. Bone pain, closely associated with joint pain, can also be a sign of vitamin D deficiency.

Cramping can be magnesium.

Essential Vitamins:

Although gluten and certain HLA-genotypes are necessary for celiac disease to develop, the mechanisms by which autoimmunity can be switched on and off by an external food antigen still remains unresolved.

Higher levels of vitamin D 80 ng/ml moderates autoimmune diseases.

Quote

 

In a new study, investigators from Brigham and Women’s Hospital found the people who took vitamin D, or vitamin D and omega-3 fatty acids, had a significantly lower rate of autoimmune diseases — such as rheumatoid arthritis, polymyalgia rheumatica, autoimmune thyroid disease, and psoriasis — than people who took a placebo.  Vitamin D supplements lower risk of autoimmune disease, researchers say  January 26, 2022