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sddave

Increased joint pain and new skin pain areas after diagnosis.

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Ever since being diagnosed almost 3 mo. ago I'm getting increased joint pain/tingling.   And I've also starting getting (on some days) pains in my eye, sore throats, and pain areas on my neck to the touch.  I will admit I've found out what I put in my mouth did contain gluten on 'some' occasions over the last 3 mo. after being diagnosed.  But I'm hardly eating any gluten compared to what I was eating over 3 mo ago.   But my joint issues, sore throat, and new skin pain areas have significantly increased or just started since my diagnosis.   I had some wrist pain prior to diagnosis and sometimes tingling in my finger tip and tip of my thumb.   I've had two EMG tests and they said it didn't show carpal tunnel.   The only other test would be ultrasound for detecting carpal tunnel.   I said forget it.   I think my issues are related to being celiac.  It seems the medical profession leaves it up to patients to figure out their own what diet and vitamin supplements that should/should not be taking after being diagnosed.   Since I don't know if it's stress, vitamin/mineral deficiency, nerve related I have taken it upon myself to call my primary and request a vitamin and mineral deficiency test.    I was taking a Centrum Men's multivitamin (gluten free) after diagnosis since I was concerned about getting enough vitamins on gluten free diet.   My primary said to stop taking the multivitamin for two weeks and then have my vitamin and mineral blood test taken.   Two weeks seems like too long of a time just to flush out the multivitamins.   Especially if I am deficient.  But that's what I'm doing.

I was wondering if anyone has had increased joint pain/tingling, increased sore throats, and skin pain areas to the touch, AFTER being on a gluten diet.  And were you able to find out the cause, and what helped with these issues.

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20 minutes ago, sddave said:

I will admit I've found out what I put in my mouth did contain gluten on 'some' occasions over the last 3 mo. after being diagnosed.  But I'm hardly eating any gluten compared to what I was eating over 3 mo ago.

With celiac you can't ingest gluten at all, ever, not even a smidge. It can take months to get better once you go completely gluten free. And it can take months to recover from accidental gluten ingestion. So you probably haven't started recovering yet. Going gluten free is not easy for many people so you're not alone in this.

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4 hours ago, sddave said:

But I'm hardly eating any gluten compared to what I was eating over 3 mo ago

Sorry, I stopped reading right here.

celiac means that you can't have just a little. You can't have any. At all. Then your healing will finally be able to start.

 

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I guess the "gradually going gluten free" tactic is not working for you.   I would recommend going 100% gluten free.  You should experience some relief in a few months.  Unfortunately, neurological damage tends to take longer to heal.

I can share that I was only anemic when diagnosed.  No GI issues at all.  Each accidental glutening has caused a different set of symptoms.  How do I know that gluten was the actual culprit?  My GI ordered follow-up antibodies testing.  Celiac disease is like a chameleon.  It is always changing.  It is never consistent.  Just a tiny amount can ramp up a huge flare-up that can take weeks or months to heal.  

 It is good that you are getting checked for nutritional deficiencies.  It might be contributing to your current symptoms, but I would wager that gluten is the real cause.    You also might consider getting your thyroid checked.  My brother has Hashimoto's like me, but his manifests as carpal tunnel syndrome.  Just something to consider.  

 

Edited by cyclinglady
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Let me make this clear.  I have not purposely eat gluten in the last 3 mo. since being diagnosed.  But had accidentally had medicine and some food that may of had because of cross contamination or not recognizing it on a food label.   Who hasn't.

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23 hours ago, sddave said:

But I'm hardly eating any gluten compared to what I was eating over 3 mo ago.   

 

You can see how we were confused.  Your earlier postings did indicate that you thought a slow withdrawal from gluten would be best for you.  Thanks for clarifying.  The learning curve for the diet is very steep.  It takes most people a while to recover for this very reason.  

It takes time to master the diet and to heal.  I hope you feel better soon.   

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2 hours ago, sddave said:

Let me make this clear.  I have not purposely eat gluten in the last 3 mo. since being diagnosed.  But had accidentally had medicine and some food that may of had because of cross contamination or not recognizing it on a food label.   Who hasn't.

Everyone slips up once in awhile and especially in the first few months on the diet. Don't beat yourself up over it, but do learn from them and try and nail all those potential slip ups. It's a good idea to eat as simply as possible and preparing at least some food yourself may help reduce the fail rate as you're not in control when ordering from a restaurant.  I don't want to sound like I'm lecturing, I'm certainly no expert, but this:

On 7/28/2017 at 6:56 PM, sddave said:

But I'm hardly eating any gluten compared to what I was eating over 3 mo ago.  

suggests that you're still thinking of gluten in terms of something that you need to not eat too much of rather than something you can't even have a crumb of. As I tried to tell you in your previous thread:

Quote

Its toxic to celiacs. It's generating an immune system response, even a tiny amount keeps that reaction going. So there's not really any benefit to cutting down and mean times the damage is continuing. 

I know you didn't like the rat poison analogy, but there was a reason behind my use of it. For diagnosed celiacs just slipping once per month is linked to increased morbidity rates. Every exposure slows your recovery and as your experiencing, your reaction will change over time as you're on the diet. The neuro symptoms are what get me first now and I find they're like an early warning that somethings amiss. 

If it makes you feel any better I woke up at 4 this morning with my quad muscle twitching like crazy. A sign I've probably slipped up somewhere or other and I will now spend the next few days studying all the food in my fridge with suspicion. It sucks, but you're not alone in thinking that.

All the best,

Matt

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17 hours ago, sddave said:

Let me make this clear.  I have not purposely eat gluten in the last 3 mo. since being diagnosed.  But had accidentally had medicine and some food that may of had because of cross contamination or not recognizing it on a food label.   Who hasn't.

I don't know of any who haven't. It takes time to learn to be rabid about checking everything until it becomes second nature to you. However, those accidents can keep your symptoms going & even make them worse than before you went gluten free. And as others have said..... it takes time to heal and neuro symptoms are the last to go.

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Right after going gluten Free in June I had many of the same things happen with pain in arms and legs as well as my back, eye pain comes and goes. Mine turned out to be because of b12 being low also because of my magnesium being low as well.  Good luck.

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