Need help understanding joint paint symptoms

[Azazello]

Hello everyone, 

About a month and a half ago I started feeling extremely fatigued gradually more and more each day. A level of fatigue I never knew was possible, where it was just impossible to do anything. I also felt extremely nauseous. In addition to this, about a month prior, I had red marks across my knuckles randomly appear and have been there since although my hand felt perfectly fine. I went to my doctor and tested positive for the TTG test at a number of 49 (here in Canada as far as the measure goes you are probable celiac over 12). My sister tested positive for a number over 300 many years ago and is a confirmed celiac. I recently did the endoscopy/biopsy but have to wait 2 months for the results. So far after 11 days of being gluten free I feel like my fatigue has become a little bit less debilitating, and my nausea is almost entirely gone. But unfortunately for almost a month now I have gradually felt more and more joint pain in my knuckles. Little sharp pains that randomly appear, often when I'm doing nothing, and sometimes when I am doing things. I've also noticed sometimes one or two of my toes have a little pang at a time. None of this has been alleviating since being gluten free.

For those of you who get joint pain as a symptom how long after being diagnosed and going gluten free did your joint pain start to alleviate? I'm worried I have something like rheumatoid arthritis as well, although a month ago before the pain when I only had the red on my knuckles I tested negative for the RF test, and I am also only 23 so the chances must be very low. But I have to wait about 2 months to see a rheumatologist to confirm or deny anything. 

Thank you. 

[cristiana]

Hello Azazello

Welcome to the forum.

I haven't had the same joint issues that you describe, although I have had issues with other joints: my sacroiliac joints and ribs, and I'd say the pain got worse initially before it got better, like there was a sort of time lag after going gluten free.

However, from memory, I think when my TTG test results were finally at normal levels I really began to feel a difference.  

11 days gluten-free is very early days yet, if this joint pain is related.  

It is good that you are seeing a rheumatologist but I am sorry you have a wait on your hands.

Has your sister had similar symptoms, incidentally?

Cristiana

 

[Azazello]

14 minutes ago, cristiana said:

Hello Azazello

Welcome to the forum.

I haven't had the same joint issues that you describe, although I have had issues with other joints: my sacroiliac joints and ribs, and I'd say the pain got worse initially before it got better, like there was a sort of time lag after going gluten free.

However, from memory, I think when my TTG test results were finally at normal levels I really began to feel a difference.  

11 days gluten-free is very early days yet, if this joint pain is related.  

It is good that you are seeing a rheumatologist but I am sorry you have a wait on your hands.

Has your sister had similar symptoms, incidentally?

Cristiana

 

Thank you, it is great a community like this exists.

I also have had rib joint pain since I was like 11 or 12 years old funny enough. Unexplained costochondritis. That does feel quite different than the pain in my knuckles though.  My sister does have tendonitis in her wrists and many places in her body, but not the very particular knuckle pain and strange redness I have developed. I do have reynauds phenomenon as well, but it has never really targeted coloring in my knuckles before. 

Even with a number as low as 49 (it seems many celiacs have a number over 10x) do you think 11 days gluten free is still very early days? I am very new to understanding all of this stuff. It's only been maybe 4 days or so I have felt like I can even function at all since the debilitating fatigue leading up to the biopsy. But I really hope I get my energy and clarity back like I used to have. 

Thank you a lot. 

 

[cristiana]

Yes, I still do think it is early days.  

 

I am sorry but I can't post anymore just now as my husband needs to use this computer this evening.  But I hope that others can help you - I'll try to post again tomorrow.

For the time being, do read this - lots of helpful tips to make sure no gluten sneaks into your new diet.

 

[Wheatwacked]

 

1 hour ago, Azazello said:

rheumatoid arthritis

Also an autoimmune disease that they don't really know what causes it.  But, almost miraculously, it eventually goes away on a gluten free diet.  It takes time and experimentation with the essential vitamins and minerals until to get them back up.  Many of the symptoms you describe are symptoms of vitamin deficiencies.  For your multiple autoimmune diseases, Celiac, Arthritis and reynauds phenomenon look for low D. Same with the bone pain, rib pain, depression if you feel down. Winter Doldrums (Seasonal Affective Disorder).  The loss of energy and tingling feet and hands, start with Thamin B1. Similar to Beri beri. Digestion issues is often choline.

 

1 hour ago, Azazello said:

after 11 days of being gluten free I feel like my fatigue has become a little bit less debilitating, and my nausea is almost entirely gone.

 This is your final answer. Now to undoing your deficiencies. Unfortunately, except for vitamin D there are no tests that tell the cellular status of nutrition, only if the plasma levels are in range. If potassium or calcium is low our body sucks it out of cells or bones so the plasma level is good. But the cells are suffering.  Also work on you omega 6:3.  Omega 6 is generally inflammatory and in western cultures we average 20:1.  Optimum is 1:1. Wheat flour is 21:1 and sweet potatoes 17:1. 

 

 

 

 

 

[Raquel2021]

6 hours ago, Azazello said:

Hello everyone, 

About a month and a half ago I started feeling extremely fatigued gradually more and more each day. A level of fatigue I never knew was possible, where it was just impossible to do anything. I also felt extremely nauseous. In addition to this, about a month prior, I had red marks across my knuckles randomly appear and have been there since although my hand felt perfectly fine. I went to my doctor and tested positive for the TTG test at a number of 49 (here in Canada as far as the measure goes you are probable celiac over 12). My sister tested positive for a number over 300 many years ago and is a confirmed celiac. I recently did the endoscopy/biopsy but have to wait 2 months for the results. So far after 11 days of being gluten free I feel like my fatigue has become a little bit less debilitating, and my nausea is almost entirely gone. But unfortunately for almost a month now I have gradually felt more and more joint pain in my knuckles. Little sharp pains that randomly appear, often when I'm doing nothing, and sometimes when I am doing things. I've also noticed sometimes one or two of my toes have a little pang at a time. None of this has been alleviating since being gluten free.

For those of you who get joint pain as a symptom how long after being diagnosed and going gluten free did your joint pain start to alleviate? I'm worried I have something like rheumatoid arthritis as well, although a month ago before the pain when I only had the red on my knuckles I tested negative for the RF test, and I am also only 23 so the chances must be very low. But I have to wait about 2 months to see a rheumatologist to confirm or deny anything. 

Thank you. 

I also experienced joint pain. For me it only went away when I completely changed my diet. 5 to 6 cups of vegetables a day (leafy  greens,  berries, mushrooms, kale etc.  I do green smoothies.  Eliminated most processed foods. I also eat lean meat and fish. I am also in Canada and all they tell you is go gluten free. That is not enough.  Following a clean diet like the AIP diet can help  great deal. Also check for vitamins deficiencies iron and  b12 are too big ones for celiacs 

[Azazello]

6 hours ago, Wheatwacked said:

 

Also an autoimmune disease that they don't really know what causes it.  But, almost miraculously, it eventually goes away on a gluten free diet.  It takes time and experimentation with the essential vitamins and minerals until to get them back up.  Many of the symptoms you describe are symptoms of vitamin deficiencies.  For your multiple autoimmune diseases, Celiac, Arthritis and reynauds phenomenon look for low D. Same with the bone pain, rib pain, depression if you feel down. Winter Doldrums (Seasonal Affective Disorder).  The loss of energy and tingling feet and hands, start with Thamin B1. Similar to Beri beri. Digestion issues is often choline.

 

 This is your final answer. Now to undoing your deficiencies. Unfortunately, except for vitamin D there are no tests that tell the cellular status of nutrition, only if the plasma levels are in range. If potassium or calcium is low our body sucks it out of cells or bones so the plasma level is good. But the cells are suffering.  Also work on you omega 6:3.  Omega 6 is generally inflammatory and in western cultures we average 20:1.  Optimum is 1:1. Wheat flour is 21:1 and sweet potatoes 17:1. 

 

 

 

 

 

Thanks for all the information! I'll try to do my best to start fixing my deficiencies. I didn't consider all the potential things my intestines may not be taking in properly. My iron levels, b12 and calcium came back normal on the blood test but I did notice that my vitamin D was slightly deficient at a number of about 60, and it seems like there is many things they dont test deficiencies for that could be the culprit.

I guess I am also curious, given my TTG level of 49. How long do you figure being gluten free will take until I'm back to normal levels and start feeling more normal again? How long did it take you after going gluten free to start feeling normal again?

Thank you. 

[Azazello]

3 hours ago, Raquel2021 said:

I also experienced joint pain. For me it only went away when I completely changed my diet. 5 to 6 cups of vegetables a day (leafy  greens,  berries, mushrooms, kale etc.  I do green smoothies.  Eliminated most processed foods. I also eat lean meat and fish. I am also in Canada and all they tell you is go gluten free. That is not enough.  Following a clean diet like the AIP diet can help  great deal. Also check for vitamins deficiencies iron and  b12 are too big ones for celiacs 

Thank you. I'll have a look at the AIP diet. I didn't know something like that was an option

[cristiana]

Hello again, @Azazello!

"I guess I am also curious, given my TTG level of 49. How long do you figure being gluten free will take until I'm back to normal levels and start feeling more normal again? How long did it take you after going gluten free to start feeling normal again?"

Good question.  I've read this forum ever since I was first diagnosed in the spring of 2013, and if there is one thing I have noticed it is that everyone's story is different. 

I have been guilty of "recovery envy" reading all the accounts (and there are many!) of people's quick recoveries.  Coeliacs who feel much better after a few days of going gluten free, with their TTG levels descending back to normal levels really rapidly, etc etc.  However, my own recovery was incredibly slow.

I was initially very poorly when they first tested me so my theory is my TTG numbers were stratospheric at the time of diagnosis (the cut-off for labs is 100 in many UK testing centres, all I know is I hit that number). 

In 2017/18 that it was discovered my consultant (who is wonderful, I think this must have been a very uncharacteristic slip-up) had forgotten to order a TTG with my annual blood tests, and when they were tested, I was still at 87!  I felt so upset as I felt I was following my diet much more strictly than my local coeliac friends.  Anyway, I redoubled my efforts at keeping my part of the kitchen clean, stopped eating out etc etc and finally, in September 2021, I reached normal levels!  Eight years!

(I don't want to sound conceited 😉 but I suspect I might hold the record on this forum for taking the longest for my TTG numbers to recover on a gluten free diet!)

But in all seriousness, I suspect you will find if you are really strict with the diet, avoiding eating out at least initially, your numbers should fall quite a lot quicker than mine.  

And yes... I still have the odd aches and pains, but the sort of rib pain that used to leave me breathless in the middle of the night and took me to ER in case it was a heart attack has not come back to that level since my numbers were normal. 

Try not to worry, just take one day at a time.  You may find you feel better long before your numbers are back to normal levels, anyway.😊

 

Edited May 16, 2023 by cristiana

[Wheatwacked]

I assune that vitamin D 60 is in nmol/ L.  Same as 27 ng/ml. That's like 27 workers in a factory built for 100.

I have to take 250 mcg (10,000 IU) a day to stay at 180 nmol/L.  That is my homeostasis point. If I stop, my level goes down much quicker than it goes back up. It has never gone above 193 nmol/L.  Doctor agrees.

 

[Beverage]

Ahhhh it's awful. You get your hopes up that now that you've identified the culprit, if you just eat gluten free, all your problems will start going away.  But like others have said, sometimes it's worse before it gets better. For me, within days of going gluten free, I felt like I was hit by a truck. I could barely stand up from a chair, weak, aches and pains like a very bad flu, but no flu. I had also tested high for candida.  My doc said a lot of inflammation is leaving your body, also some candida die off.  Look up Herxheimer reaction.  Advice was to drink tons of water, try to move to help lymph system and help it get out, and eat good food of meat and veggies.  For me it lasted about 2 weeks, dropped 30 lbs of weight I didn't have extra to lose.  Then in about 3 months I was gaining back weight and muscle, yay.  Review everything around you and make sure you're not still getting exposed to gluten.  My early glutenings were from things I hadn't considered at first, not from eating, but inhaling (doc said eyes ears nose and mouth all lead to the same place)... dust from a home improvement project cutting into old wall board, also feeding my neighbor's chickens while they were on vacation, there's grain in their feed.

[Wheatwacked]

On 5/24/2023 at 1:46 PM, Beverage said:

feeding my neighbor's chickens while they were on vacation

Where do chickens go for vacation? 🐔

[Azazello]

On 5/24/2023 at 10:46 AM, Beverage said:

Ahhhh it's awful. You get your hopes up that now that you've identified the culprit, if you just eat gluten free, all your problems will start going away.  But like others have said, sometimes it's worse before it gets better. For me, within days of going gluten free, I felt like I was hit by a truck. I could barely stand up from a chair, weak, aches and pains like a very bad flu, but no flu. I had also tested high for candida.  My doc said a lot of inflammation is leaving your body, also some candida die off.  Look up Herxheimer reaction.  Advice was to drink tons of water, try to move to help lymph system and help it get out, and eat good food of meat and veggies.  For me it lasted about 2 weeks, dropped 30 lbs of weight I didn't have extra to lose.  Then in about 3 months I was gaining back weight and muscle, yay.  Review everything around you and make sure you're not still getting exposed to gluten.  My early glutenings were from things I hadn't considered at first, not from eating, but inhaling (doc said eyes ears nose and mouth all lead to the same place)... dust from a home improvement project cutting into old wall board, also feeding my neighbor's chickens while they were on vacation, there's grain in their feed.

I hope its just something like Hexheimer reaction. Now that I have been off gluten for 21 days I feel almost back to normal energy levels. My brain concentration, levels of nausea, energy levels, awaresness etc are all back to normal. But unfortunately I'm now at about 37 days of joint pain that has slowly gotten worse over that time. I'm very concerned.

[Azazello]

On 5/16/2023 at 6:21 AM, Wheatwacked said:

I assune that vitamin D 60 is in nmol/ L.  Same as 27 ng/ml. That's like 27 workers in a factory built for 100.

I have to take 250 mcg (10,000 IU) a day to stay at 180 nmol/L.  That is my homeostasis point. If I stop, my level goes down much quicker than it goes back up. It has never gone above 193 nmol/L.  Doctor agrees.

 

I've been taking 2000 IU a day for the last two and a half weeks or so now. Moving up to 3000 IU a day now. I guess one question I just thought of is if this were due to a nutrient defeciency wouldn't I be experiencing joint pain in more places than specifically the progression I have been seeing in my hands over the last 37 days or so? It just seems so strange. 

[Azazello]

Just wanted to update anyone so far who ends up reading this in the present or future with a similar set of symtoms so that it may help you. I did officially just get confirmation from the biopsy that I am celiac two days ago. So now I definetly know that all the nausea, fatigue, anxiety, lack of concentration, confusion, dizziness, etc was due to my celiac. I felt fully back to my normal self I would say about 2 and a half weeks off gluten. Also interestingly enough the redness I previously mentioned I had been experiencing over my knuckles has visually appeared lesser than before I started going gluten free - at least to a certain degree. Though if this is instead due to my reynauds disease it could be because the summer weather and hotter temperatures have finally reached my city. Unfortunately the pain has continued to get worse over the last 37 days in my hand joints, and I'd say over the last week and a half I have started feeling moments of it in a few of my toe joints though not to the same extent - all despite the fact I have been gluten free about 21 days now. I'm still awaiting the rheumatologist appointment sometime in the next 2 months. I will update this when I find out either anything else, or if I do in fact have something like rheumatoid arthritis. But until then, I will try my best to be gluten zero and have as full a count of vitamins and minerals as I can in my diet.

I read a post of a guy on this forum who seemed to have a similar case as me in 2017 I have now messaged, its too bad he never added in the end whether or not it was rheumatoid arthritis or celiac he was experiencing. And he hasn't visited the site since 2018. Hopefully he messages back if the message notifies him in his e-mail or something. 

[cristiana]

Thanks so much for the update.  It is always good to hear how people are progressing, so please do keep us posted.  I hope that your rheumatologist appointment is helpful.

Cristiana

[DALTE04]

You may be sensitive to other food chemicals like oxalates or lectins. Keep in mind that gluten is technically a lectin. Seeing how gluten causes inflammation and intestinal damage, it increases the likelihood of leaky gut and other food sensitivities. You may benefit from researching some of Sally K. Norton’s work on oxalates and Dr. Gundry’s work on lectins. Personally, I believe that those of use who have had a wide range of celiac symptoms will benefit from eliminating or reducing most plant defense chemicals.

[Wheatwacked]

You may want to get tested for adrenal insufficiency.  It you are not making enough cortisol. 

Keep increasing your vitamin D intake.  The magic level is 200 nmol/L (80 ng/ml).

Reynaulds and rheumetoid arthritis are also autoimmune diseases and as such requires lots of vitamin D to modulate them and also do the other myriod of things it needs to for us to remain healthy.  Vitamin D and inflammatory diseases

Finally, the western diet has way too much omega 6 and not enough omega 3. It is as high as 20:1 where it should be 1:1 to reduce inflammation. Some bad information for example is to eat sweet potato insteat of white, but sweet potato has a omega 6:3 ratio of 17:1, whereas white potato contain around 37 mg of omega 3 and 127 mg of omega 6 fatty acids. 127 / 37 = 3.4:1.  Omega 6 promotes inflamation. Omega 3 soothes inflamation.

That advice only serves to sell more Omega XL and other fish oils. Good for them, not for us.

Vegetables: Contents of Omega – 3 and Omega – 6