Are these all celiac symptoms?

[oli97]

I have had a positive celiac blood test from the hospital so have been told it is very likely I have the disease. I have been suffering from numerous symptoms, some for a while and some more recent, but I am unsure whether they are all related to the disease. I have not been properly diagnosed by biopsy yet so am still eating a full gluten diet. The symptoms I have been feeling are:

• Chronic lightheadedness (since December)
• Recurring diarrhea (pretty sure this is celiac related)
• Headaches pretty much all the time
• Pain in my eye and increased number of floaters
• Aches and pains throughout my body, especially muscle pain in my neck and back
• Lack of energy almost all the time

Just to note I am not anaemic or deficient in any vitamin that I know of; my B12 is fine and my vit D is 40 which is good. 

I am dreading the thought that these problems won't go away once I go gluten-free, but I acknowledge they may be unrelated.

Any help is appreciated!!!

[Jays911]

56 minutes ago, oli97 said:

I have had a positive celiac blood test from the hospital so have been told it is very likely I have the disease. I have been suffering from numerous symptoms, some for a while and some more recent, but I am unsure whether they are all related to the disease. I have not been properly diagnosed by biopsy yet so am still eating a full gluten diet. The symptoms I have been feeling are:

• Chronic lightheadedness (since December)
• Recurring diarrhea (pretty sure this is celiac related)
• Headaches pretty much all the time
• Pain in my eye and increased number of floaters
• Aches and pains throughout my body, especially muscle pain in my neck and back
• Lack of energy almost all the time

Just to note I am not anaemic or deficient in any vitamin that I know of; my B12 is fine and my vit D is 40 which is good. 

I am dreading the thought that these problems won't go away once I go gluten-free, but I acknowledge they may be unrelated.

Any help is appreciated!!!

I experienced 4 of the 6.  There are hundreds of symptoms.  Don't go gluten free yet.  Get tested before you do, as it is necessary for proper readings.  I hope you get some clarity and relief soon.

[squirmingitch]

I experienced 5 of the 6. My headaches were full blown migraines which thankfully did not occur every day but were occurring on an increasing basis. My "D" was not all the time but I have the celiac rash & we often have milder, less frequent episodes of "D".

Everything resolved for me after going gluten free BUT it didn't happen immediately -- it takes time. 

[oli97]

3 hours ago, squirmingitch said:

I experienced 5 of the 6. My headaches were full blown migraines which thankfully did not occur every day but were occurring on an increasing basis. My "D" was not all the time but I have the celiac rash & we often have milder, less frequent episodes of "D".

Everything resolved for me after going gluten free BUT it didn't happen immediately -- it takes time. 

Out of interest, which was the symptom of mine you didn't have, and how long did it take after going gluten-free for the symptoms to clear?

[squirmingitch]

I didn't have pain in my eye. I did have floaters which I made no connection to celiac but I seldom have any floaters these days. However, my right lower eyelid kept having spasms that nearly drove me up a wall! All I can say is that's gone now.

You can't go by the length of time it takes others symptoms to resolve. We are all individuals. I think a lot depends on how long you've been undiagnosed, how bad the damage got and a million other factors that have to do with each persons individuality. 

I can't give you an exact timeline on resolution of symptoms. I had SO many! They resolved at different times. some things I didn't even notice were gone until I had been gluten-free for 2 or 3 years because I had so many bigger fish to fry in the symptom resolution department. I'm going to say that by about a year & 1/2 almost all my symptoms had pretty well resolved or were well on their way except the celiac rash. Symptoms ramped down gradually. The migraines became less frequent and milder gradually. It's not like a symptom goes away overnight. They slowly get better. But your mileage may vary. Some people have resolution pretty quickly.

[icelandgirl]

Hi Olie  and welcome to the board!  I had all but the eye pain. For me, the D was the worst...it was happening 10-20 times a day, every day.  Horrendous.  It took a month for me to have a normal BM  and I was super excited.  But I did continue to have D on a regular basis for a while.  

Keep in mind that everyone heals at a different rate.  It depends on how long you've been sick and how much damage there is.  Once your testing is done and you do go gluten free, be patient with your body.  It will heal and your symptoms will start to improve slowly, but surely.  Hang in there!

[oli97]

I forgot to add that I also have joint pains (especially in my left hand) and random tingling and burning pains around my body. When I have looked into these symptoms they resemble fibromyalgia so it would definitely put me at ease if they have been known to be related to celiac. 

[cristiana]

Hi Oli,  I can relate to your symptoms.  My joint pain was in my sacroiliac joints; I had tingling in my hands, calf muscle (left) and feet, sometimes woke up with numb arms and hands; some months after going gluten free I started to experience burning in a band around my rib and also hip (both left sided).    

The SI joint pain I gather is common in celiac disease; the tingling in my hands, calf muscle and feet waxes and wanes but is much better for the most part (I was subsequently DX'd with ulnar tunnel BTW which is common in celiacs which explains the problems with my hands/arms) and the burning which was DX'd as so many different things by different doctors has for the most part disappeared, but oddly plays up if I get very cold or wear tight clothes.  No idea what it is - inflammation?   I also had dizziness/vertigo but that turned out to be an old whiplash injury that triggered off cervical dizziness.  Not all our problems are linked to celiac and one becomes a bit of a detective at times trying to figure it all out!

I wonder what your B12 levels are - because I understand if you are having any nerve issues at all the ideal level to attain is 500.  I had a lot of symptoms but because I was just over the minimum level, I think at 160, so my doctor didn't think to offer me supplementation. Whereas my nutritionist told me to supplement and I found that helpful with the tingling.    A warm bath with Epsom Salts helped the burning.

[oli97]

12 hours ago, cristiana said:

Hi Oli,  I can relate to your symptoms.  My joint pain was in my sacroiliac joints; I had tingling in my hands, calf muscle (left) and feet, sometimes woke up with numb arms and hands; some months after going gluten free I started to experience burning in a band around my rib and also hip (both left sided).    

The SI joint pain I gather is common in celiac disease; the tingling in my hands, calf muscle and feet waxes and wanes but is much better for the most part (I was subsequently DX'd with ulnar tunnel BTW which is common in celiacs which explains the problems with my hands/arms) and the burning which was DX'd as so many different things by different doctors has for the most part disappeared, but oddly plays up if I get very cold or wear tight clothes.  No idea what it is - inflammation?   I also had dizziness/vertigo but that turned out to be an old whiplash injury that triggered off cervical dizziness.  Not all our problems are linked to celiac and one becomes a bit of a detective at times trying to figure it all out!

I wonder what your B12 levels are - because I understand if you are having any nerve issues at all the ideal level to attain is 500.  I had a lot of symptoms but because I was just over the minimum level, I think at 160, so my doctor didn't think to offer me supplementation. Whereas my nutritionist told me to supplement and I found that helpful with the tingling.    A warm bath with Epsom Salts helped the burning.

I do certainly feel like a detective!

I have had no injuries that would bring on the aches, pains and tingling.

My B12 levels were around 400 at my last blood test so they seem fine - although I have read that many B12 molecules can be "inactive", i.e. not functioning but showing up in your B12 levels so it appears you are healthy. If this was the case I wouldn't know how to find out though. 

[cyclinglady]

3 hours ago, oli97 said:

I do certainly feel like a detective!

I have had no injuries that would bring on the aches, pains and tingling.

My B12 levels were around 400 at my last blood test so they seem fine - although I have read that many B12 molecules can be "inactive", i.e. not functioning but showing up in your B12 levels so it appears you are healthy. If this was the case I wouldn't know how to find out though. 

You do have an injury -- your gut!  Just give yourself time to heal and be sure you are eating a healthy diet of proteins, fats and a wide array of veggies and fruit.  (This is from a person with b12 levels over 2,000 who still experiences tingles and aches when exposed to gluten and I take no supplements.)

[GFinDC]

Nightshades can cause joint pain in some people.  You could go ahead and eliminate them now.  They don't affect the celiac testing.