Strange tingling/buzzing/sensitivity sensation - won’t go away!

[KatieCD]

Really hoping that someone will be able to help with the situation I’m currently facing. It’s a bit confusing (which seems to be the case with Celiac generally producing lots of strange side effects!)

Okay, so I first received a positive celiac blood test via the GP in early 2018 after experiencing a few months of diarrhoea. It was triggered by a stomach virus in work that everyone seemed to get, but mine never quite went away. That’s when I headed to the doctor and got this positive celiac result, completely out of the blue! I have no celiac sufferers or other autoimmune diseases in the family (that we know of), so I couldn’t really understand how this had happened. 

I then got advice from the doctor to go completely gluten free immediately and she referred me for an endoscopy to confirm diagnosis (no mention of the fact that you need to be eating gluten to get a positive). So surprise surprise I got a negative endoscopy, and the gastro was absolutely certain that I wasn’t celiac for this reason. Despite this, I’d noticed that all of my diarrhoea and gastro symptoms disappeared pretty much immediately after stopping eating gluten. Based on this, I continued to cut gluten out. Also, I understand that a positive blood test alone is pretty much a sure diagnosis of celiac right?

Anyway, onto this pesky tingling. A few months after my initial blood test diagnosis I noticed I was getting some very low level tingling in my lower legs. Very low level, easy to miss. I mentioned this to the gastro and he just suggested it could be some nutrient deficiencies still causing issues after the few months of diarrhoea.

I stuck to a gluten free diet (with the occasional accidental slip up), hoping that the tingling would go away, but it’s still very much here and I’d say it’s slightly worse. It’s really hard to describe. It’s almost as if my lower legs are buzzing/vibrating. My skin feels really sensitive, so if I brush something against it I get a wave of tingles/shivers. It’s almost that skin sensitivity feeling you get if you have a fever (but I don’t have a fever). Does anyone have this? 

I was referred to a neurologist to check that there was nothing else going on. They did an MRI and a nerve conduction test, both came back absolutely fine. I also have no weakness/numbness etc. It’s just a sensation. But I don’t know what’s causing it and if it will ever go away.

Would love to know if anyone has these sensory issues and how you improved them? I take multivitamins, magnesium and B12 with no change. Could I secretly be ingesting low levels of gluten which continue to cause problems, or could I have other food intolerances which cause systemic inflation. I’ve not yet cut out any food groups.

Really hoping someone will be able to shed some light on this. 

[GFinDC]

Do you eat oats?  Some of react to oats like we do wheat, rye and barley.

[cyclinglady]

I always have tingling legs.  I also have healed from celiac disease (based on repeat endoscopy/biopsy).    But I also have two other diagnosed autoimmune disorders and most likely am developing a fourth autoimmune disorder.  My tingling legs worse when my autoimmune is flaring.  While I can control celiac disease, I can not control the others.  I am on no immunosuppressants and I want to avoid medication for many reasons.   I am always checked for vitamin deficiencies because of celiac disease and autoimmune gastritis which can lead to a B-12 deficiency.  My Immunoglobulin A is very high which can be due to autoimmune disease or developing MGUS/cancer.  My doctors and I are just keeping a watchful eye because all my biomarkers are okay for now.  

[Posterboy]

14 hours ago, KatieCD said:

Would love to know if anyone has these sensory issues and how you improved them? I take multivitamins, magnesium and B12 with no change. Could I secretly be ingesting low levels of gluten which continue to cause problems, or could I have other food intolerances which cause systemic inflation. I’ve not yet cut out any food groups.

Really hoping someone will be able to shed some light on this. 

KatieCD,

What type (form) of Magnesium are you using....I can almost guarantee it is not Magnesium Glycinate/Citrate  because these are more expensive versions and harder to find usually....

Magnesium Citrate with meals and Magnesium Glycinate (with or without meals) is/are the best form(s) to take...

Also try finding the Benfotiamine (fat soluble) form of Thiamine....take this with Enzymic B-50/B-100 with meals or 2x a day....

Most people will begin to notice an improvement after a month.....and sustained difference after 3 months...

I had you "tingling" in my extremities...and thought I would never get rid of it....taking B-12 did not help me....

Find a good quality B-1 fat soluble (Benfomatine) found in the diabetic section of most vitamin stores and Magnesium Glycinate (easiest on the stomach to take)....without "flushing" that Magnesium Citrate can cause on an empty stomach....Your Enzymic B-Vitamin will have B-12 in it's methlyform....(the easiest to absorb) or you can find a Methyl sublingual B-12 that absorbs under you tongue...

Many peoples' stomach stomach acid is to low to methylate B-12....thus even when taking it (in it's  unmethylated) form .....it can not be asborbed by the body....

Here is a nice online article about the best form of Thiamine aka B-1 to take.

https://www.youtube.com/watch?v=Fx6MQpOYu44&feature=youtu.be&fbclid=IwAR0SzDxGwhB3CL_wfferjjZU0T0_Fpg1LfFFtseCkMHddDnIMKh9u9Ad_QQ

When I found a high quality Magnesium (Glycinate/Citrate), high quality (Fat Soluble) Thiamine aka Benfotiamine and a good Enzymic B-Vitamin my heath got better...take with meals for 6 weeks it will make a big difference in your nerve tingling pain too I believe!

Keep us up informed if it helps you.....so It can help other too! and why I share my knowledge/experience/research so it can help someone else!

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy,