The best of times, the worst of times.

[AmericanaMama]

When I first went gluten free, my joint pain symptoms went down about 50%. I still have residual neuropathy and muscle stiffness. I am also basically on a gluten-free-Paleo allergy elimination type of diet. The last few days my nerve pain has kicked up. Also I feel like a joint pain wants to come back. Does this whole journey sort of wax and wane? Do you have good days and not-so-good days?

I'm normally a very hopeful person but I started getting nervous yesterday that maybe it isn't just celiac. Maybe it is also stupid Sjogren's I have.

My seasoned fellow celiacs, might you offer me any insight or strategies in this journey? I have been gluten free for a little more than two months. I wondered if having two drinks over the weekend affected my neuropathy as well? I guess alcohol is just not an option. Also, I have started walking again everyday for about two to three miles.

[Scott Adams]

I've had some bad years! Although my recovery seemed to be dramatic, that was just in comparison to how sick I had been before going gluten-free. There was an ~10-15 year period in my life afterwards where I have chronic stiff necks, major knots in my shoulders and neck, and around once per month I would wake up with such a bad stiff neck I could not turn my head for a couple of days. 

I did not associate these issues with celiac disease, or nutrient deficiencies, which I now believe was probably the major cause. I attributed it to working long hours in front of a computer, pillow issues, ergonomic issues, etc., but after properly supplementing for the last 10 years most of my neck issues have finally gone away (I'm still working to much at a computer with mostly the same ergonomic setup--I did switch to a thumb trackball mouse and bamboo pillow, both of which did help).

So it can take time to figure out the various issues that may or may not be related to celiac disease.

[AmericanaMama]

1 hour ago, Scott Adams said:

I've had some bad years! Although my recovery seemed to be dramatic, that was just in comparison to how sick I had been before going gluten-free. There was an ~10-15 year period in my life afterwards where I have chronic stiff necks, major knots in my shoulders and neck, and around once per month I would wake up with such a bad stiff neck I could not turn my head for a couple of days. 

I did not associate these issues with celiac disease, or nutrient deficiencies, which I now believe was probably the major cause. I attributed it to working long hours in front of a computer, pillow issues, ergonomic issues, etc., but after properly supplementing for the last 10 years most of my neck issues have finally gone away (I'm still working to much at a computer with mostly the same ergonomic setup--I did switch to a thumb trackball mouse and bamboo pillow, both of which did help).

So it can take time to figure out the various issues that may or may not be related to celiac disease.

Thanks for your thoughts. What is a recovery time frame for folks? Months, years? Thanks

 

[Scott Adams]

The average time is 2 years, and it could probably be faster if people knew about things like hidden gluten in food additives, cosmetics, etc., and if they took dietary supplementation seriously and tested for vitamin & mineral deficiencies. 

In my case I think it was a combination of not supplementing right away, and working at a desk too much, but I now look at this period of my life as a point where I hadn't fully dealt with celiac disease.

[AmericanaMama]

10 hours ago, Scott Adams said:

The average time is 2 years, and it could probably be faster if people knew about things like hidden gluten in food additives, cosmetics, etc., and if they took dietary supplementation seriously and tested for vitamin & mineral deficiencies. 

In my case I think it was a combination of not supplementing right away, and working at a desk too much, but I now look at this period of my life as a point where I hadn't fully dealt with celiac disease.

The one descriptor on food packaging that kills me is the one that says spices. What the heck are "spices"? Isn't that a subjective term? LOL! One man's cinnamon could be another man's dryer lint, LOL.

Could you tell me what vitamins and minerals I should be tested for? Is there a list here on the site? I have seen some lists and they are quite involved. I think it would probably take me a couple weeks to do because I have anemia, LOL. Are there a list of what I would consider the "biggies"? I recently had a lipid particle test done in lieu of standard cholesterol panel. I was billed for it because my insurance wouldn't cover it. It was $47, which isn't the end of the world but if I'm doing 15 to 20 blood panels, and insurance doesn't cover, that could really add up.

Thank you again for your time and your thoughts.

[Scott Adams]

These would be a good place to start:

• Vitamin A deficiency
• Vitamin B1 deficiency
• Vitamin B6 deficiency
• Vitamin B12 deficiency
• Vitamin D deficiency
• Vitamin K deficiency
• Magnesium deficiency
• Zinc deficiency

[Scott Adams]

PS - I believe that in the USA "Spices" cannot contain gluten, and all wheat must be declared on the allergen statement.

[AmericanaMama]

3 hours ago, Scott Adams said:

These would be a good place to start:

• Vitamin A deficiency
• Vitamin B1 deficiency
• Vitamin B6 deficiency
• Vitamin B12 deficiency
• Vitamin D deficiency
• Vitamin K deficiency
• Magnesium deficiency
• Zinc deficiency

Thank you. I think I read once that the magnesium level that is preferred is a Magnesium-RBC. I will talk to my doc about this.

[Scott Adams]

I left out Iron…check your iron levels as well.

[Wheatwacked]

Vitamin C . B5, folate and choline are also affected but rarely adressed. Here's a good article: Appropriate nutrient supplementation in celiac disease (tandfonline.com) https://www.tandfonline.com/doi/pdf/10.3109/07853890.2013.849383 "celiac disease patients on a GFD for at least 10 years with neither evidence of histological damage nor positive serological markers...in this population, 20% had low folate levels...gluten-free cereal products, including breads and pastas, contain lower amounts of folate compared to their gluten-containing counterparts"

[AlwaysLearning]

Ongoing neuropathies immediately made me think B12 deficiency. If you haven't been tested for deficiencies, you should probably do so immediately. You've been malnourished for years, so you have to presume you have some.

Once you get tested and know which ones you should be supplementing, make sure to research everything about what supplements you're taking to make sure they are gluten free, are the most accessible form, are the correct dosage, are as close to bio identical as possible, and don't conflict with any other medications you're taking.

Many supplements have their own symptoms or dangers so you want to be as informed as possible before you start popping pills. 

But you can have hope. Supplementing deficiencies often has a pretty quick effect so you should be feeling better soon.

[AmericanaMama]

Thank you. Thank you for taking the time. At least in the past, my B12 and B vitamins have been at a normal level. But what is normal? LOL!

[AlwaysLearning]

I'm really sorry that you're having a tough time of it. That totally sucks. I wish I could say something to help reassure you or to help make you feel better, but I will admit that I don't have any experience with ongoing symptoms. 

Alcohol can be problematic in a number of different ways. I have had gluten-free friends who claim that because their alcohol of choice is distilled, it "should" be gluten free, but I personally don't think that anything made in a contaminated facility, processing ingredients that originally contained gluten, can end up 100% gluten free.

But even wine can be problematic for completely different reasons. Some people react to sulfates, but we might all react to the histamines. The way histamines work is that your body produces some and you can also get them from what you eat, but you won't start to have reactions until you cross a threshold of having too many in your system (a cup being filled has no symptoms, but the cup overflowing does). Even if you don't have allergies, you can have allergic-type reactions to a food simply because your body has built up too many histamines. But that wouldn't be joint pain or neuropathies.

I do know that back when I was still consuming gluten, that I had problems with other autoimmune diseases as well, as if having one that was actively acting up sent out invitations for others to come join the party. But after going gluten-free, all of the others went home, not even one crashed on the couch. So I think you can have hope for the sjorgren's to calm down if you're super careful about gluten.

Anyway, I hope you feel better soon.