Symptoms related to gluten?

[BookLou]

Hi! For the past 5 months roughly I have had a very random set of symptoms that I could not figure out including Charley horses throughout the night, random waves extreme fatigue, brain fog, muscle weakness, chronic cough etc. I could not figure out what it was and so far my blood tests have only signaled to non specific inflammation. I went gluten free and at first did not notice very much improvement and was giving up hope, then at exactly one month in I noticed most of the symptoms had calmed immensely. I was wondering if anyone else had seen these symptoms related to gluten sensitivity or intolerance? I am torn because I did not see improvement for the first part of my gluten free journey, but all of a sudden at the one month mark it drastically improved and I'm unsure if that is related or not. Also find it interesting that I have such a wide range of symptoms but no Gl symptoms which are often seen with gluten. 
A follow up question- the cough has improved but is still present at 1.5 months. When do you think that will go away?

[trents]

Welcome to the forum, @BookLou!

Many or most people with celiac disease do not have GI symptoms, or at least to any significant degree, until damage to the small intestine's villous lining becomes serious enough with time, often years of time. We call them "silent" celiacs. It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease. There is no test for NCGS. Celiac disease must first be ruled out. 

I would actually be surprised if you have actually been eating truly gluten free as opposed to practicing a significantly lower gluten diet. It is easy to eliminate most gluten from our diets but much, much harder to be truly gluten free because gluten is found in so many manufactured food products that you would never expect to contain it. There is usually quite a significant learning curve in achieving a truly gluten free state. My point is, your cough and other symptoms may have improved more quickly if you had truly eliminated all gluten from your diet. Please see the attachment below.

Please be aware that testing for celiac disease requires you to be consuming significant amounts of gluten in order for the testing to be valid. Current guidelines are calling for at least 10g of gluten (the amount in about 4-6 slices of bread) daily for at least 2 weeks previous to testing. 

 

[cristiana]

@trents makes some good points.

Yes, I had the symptoms you mentioned. and they improved after I went gluten free, although it took some time 

However, the cough was something that occurred after I had been diagnosed with coeliac disease and was following a gluten-free diet.  It turned out to be related to reflux.  I adopted a reflux diet, tried to stop eating three hours before going to bed, slept with a special  wedge pillow designed for reflux sufferers (means that the acid can't get up your throat so easily at night) and used Gaviscon Advance before I went to bed.  The throat irritation stopped after a few weeks.   I mention this in case.

Incidentally, can you tell us which coeliac blood tests you took?

Cristiana

Edited July 19, 2024 by cristiana

[trents]

I had the same thought as Cristiana about your cough being related to GERD, which is a very common co-malady in the celiac community. If this be the case, be aware that most doctors will want to put you on a PPI (Proton Pump Inhibitor) which is not a road you want to go down if you can possibly avoid it. PPIs lower gut acidity which inhibits digestion and absorption of nutrients which in turn frequently leads to other medical issues. It's better to address GERD (aka, acid reflux disease) with diet and lifestyle changes. Simple things like avoiding caffeine, spicey foods and things like avocados and bananas which relax the lower esophageal sphincter. Also raising the head of your bead and avoiding activities that require a lot of bending over soon after meals. Things like that.

[Wheatwacked]

Out of the blue, are you on Lisinopril for blood pressure?

Like a cut on your arm, it takes time to heal.  The higher your vitamin and mineral intake, the faster you may recover.  Celiac Disease is a disease of malabsorption

On 7/18/2024 at 10:51 PM, BookLou said:

Charley horses throughout the night, random waves extreme fatigue, brain fog, muscle weakness

You have low vitamin D is a virtual given.  We all do. Charley Horse likely B vitamins, Thiamin, Riboflaven prime suspects. Brain fog, fatigue and gastro issues Choline. Muscle tone, brain fog, shin and hair, slow wound healing, iodine.