Six Months Gluten Free--New Symptoms?

[Nicole Thomas]

I haven't posted since October, but a lot has changed since then. I was never formally diagnosed as my doctor told me to go gluten free for 2 weeks BEFORE getting tested. I didn't want to gluten myself again, and when many of my issues improved, I decided I was okay not knowing if I was celiac or just highly intolerant.

 

That said, the pain in my lower right abdomen has continued. I had 2 ultrasounds done. One showed I had gallstones but the surgeon said unless I was having back-to-back attacks, he didn't want to remove it. The second ultrasound showed a complex cyst on my right ovary.

 

I can handle both through diet and knowing that every month, I'll have stabbing pains from my cyst as I've been told I have endometriosis.

 

One thing I have noticed in the last 1-2 months is very weak, painful joints.

 

A few weks ago, I was opening a juice bottle. I was in the process of twisting the cap off when there was a pop in my wrist. There was no swelling, only pain. It's been having moments of weakness and pain ever since. I've tried following doctor's orders for the usual tendinitis cures such as rest, ice and muscle relaxers, but they haven't helped.

 

Even though I've been gluten free for close to six months, can it still cause weak joints? I've read here symptoms can appear and last 18-24 months later. I know my diet has changed drastically since going gluten free. I don't eat much meat aside from chicken as it's the only thing that doesn't make me sick.

 

Anyone else suffering from weak joints or tendinosis (degeneration of tendons)?

[Kathyl067]

I too have been having severe joint pain, not everyday but at least a couple times a week it seems to be getting worse. It shuts me down for half the day. The only thing that helps is heat. A lot of heat. I have had this going on about the same amount of time that I was diagnosed back in December . Finally got to go to my second opinion doctor at the university and she says that it is not very common for Celiacs to have such severe joint pain. She recommended that I give it a couple months and see if it goes away with my diet. If not she said to see my primary doctor for a recommendation to a arthritis specialist . It's in my knees elbows and hands bad. Just strange how it's hand in hand with the same time as the celiac. Other then this I have been feeling much better . Been gluten free since my diagnosis back in December . I wish we could find out if it's related to our Celiac.

Best of luck with yours.

[cyclinglady]

Is your gallbladder functioning? A HIDA scan is used to test functionality (emptying/squeezing). Mine reached 0% and became infected after having attacks for 30 years.

[Nicole Thomas]

I haven't had a hida scan as the tech and surgeon both felt it wasn't sever enough. They mentioned possible wall thickening, but the biggest stone was under 4 cm. I'm supposed to get another scan in June or July to see if things have gotten better or worse.

 

I don't have attacks much anymore since changing my diet from fatty foods and gluten, though it does happen occasionally if I'm not mindful. For example, I had one last Monday because when we cooked down our turkey to make stock, we didn't remove the skin. The broth that it made had more fat in it than I could handle (even from just one helping). I stopped eating it after that and have been fine since.

[gwynanne4life]

I haven't posted since October, but a lot has changed since then. I was never formally diagnosed as my doctor told me to go gluten free for 2 weeks BEFORE getting tested. I didn't want to gluten myself again, and when many of my issues improved, I decided I was okay not knowing if I was celiac or just highly intolerant.

 

That said, the pain in my lower right abdomen has continued. I had 2 ultrasounds done. One showed I had gallstones but the surgeon said unless I was having back-to-back attacks, he didn't want to remove it. The second ultrasound showed a complex cyst on my right ovary.

 

I can handle both through diet and knowing that every month, I'll have stabbing pains from my cyst as I've been told I have endometriosis.

 

One thing I have noticed in the last 1-2 months is very weak, painful joints.

 

A few weks ago, I was opening a juice bottle. I was in the process of twisting the cap off when there was a pop in my wrist. There was no swelling, only pain. It's been having moments of weakness and pain ever since. I've tried following doctor's orders for the usual tendinitis cures such as rest, ice and muscle relaxers, but they haven't helped.

 

Even though I've been gluten free for close to six months, can it still cause weak joints? I've read here symptoms can appear and last 18-24 months later. I know my diet has changed drastically since going gluten free. I don't eat much meat aside from chicken as it's the only thing that doesn't make me sick.

 

Anyone else suffering from weak joints or tendinosis (degeneration of tendons)?

Oh my goodness, I can totally relate. I was officially diagnosed with Celiac Disease last September through biopsies, and tested positive for the gene.  I am 58 years old, and can't say that I really ever had the typical symptoms of Celiac. But did suffer from allergies, and panic disorder, brain fog, and crashing fatigue.  I went immediately off of gluten.  The first few weeks were rough. I felt worse - I started having horrible neuropathy, tingling in my legs, and RLS.  I also felt exhausted and anxious.  Then, it subsided, and I thought I was making headway. Well, since my diagnose other weird symptoms that I never presented with before now plague me - every joint  from my neck, shoulders, wrists, knees, ankles are constantly popping. (I have never had that before),  I am taking D3 and Calcium along with Magnesium, B12, and B-Complex.   Also, now I've developed a shock like burning sensation in the ball of my right foot and two little toes. I woke up this morning thinking I had stepped on a tiny piece of glass, but it was this sensation I was having in my toe.  I now have all of these other issues that I'll have to see some specialists for. I go for my 1/2 year  follow up since my endoscopy with my gastro-enterologist later this month to see how I am doing. Truth is I don't know - and I feel very very afraid. 

[Nicole Thomas]

I am so sorry to hear about this! It is possible it could be something not related to Celiac, but I think we tend to look at everything as a possible symptom because of it.

I've never suffered weak joints until just recently. I did used to have tingling in my hands and feet which would go numb, but not this kind of pain which keeps me from doing my work.

[GottaSki]

Welcome Nicole, Kathy and Gwynann!

 

For me, when diagnosed my digestive symptoms improved, but my joint and muscle pain got worse.  If your pain continues, you should be tested for other autoimmune disorders, minimally for inflammation.

 

One very good tool is a food/symptom log.  Other foods can contribute to joint pain.  A log can often help reveal other food sensitivities.

 

The foods in the nightshade family (tomato, potato, eggplant, peppers) often contribute to joint pain. 

 

For some of us it simply takes a long time after complete gluten removal for the digestive system to heal.  Make sure there is no gluten in your diet...many of us become more sensitive to minute amounts of gluten from cross-contamination or eating gluten-free items at restaurants that are made along side gluten containing items, etc. 

 

Hang in there

[Nicole Thomas]

Thanks, Gottaski I've been keeping a foods, digestion and health log since October. I avoid nightshades as well as most fatty foods at all costs since I also suffer from gallstone attacks and I noticed how much indigestion I got from the nightshade family. I went to the doc again yesterday and this time was seen by a hand specialist. They believe it's tendinitis as well, so I'm asked to wear my brace for 4 weeks, 24/7 (aside from showers). If it doesn't improve after that, then they want to get an MRI and do more tests. I'll have the ask about auto-immune at that time if this pain continues.

[GFinDC]

Hi Nicole,

 

Some other things that can cause joint pain are soy and thyroid issues.

 

I am curious about your statement that only chicken works for your diet.  There is a disease spread by a tick that causes an allergic reaction to red meats.  I don't know what other symptoms the disease causes but it might be something to check out.

[NoGlutenCooties]

This may sound completely off the wall... and this is just me hypothesizing again because that's just how my mind works.  But do you think it's possible that the general inflammation that occurred because of the gluten ingestion could have been masking some of the joint pain?  (I know inflammation often causes joint pain.. so maybe this doesn't even make sense.)  I'm sort of picturing some mild inflammation sort of cushioning the joints and easing the pain.  But then when you go off gluten and the inflammation is no longer there, then the joint pain comes through.  So it could be an underlying issue that is unrelated to the Celiac, but that the gluten-reaction was actually helping to mask.

 

Does that sound at all possible?

[Nicole Thomas]

Noglutencooties, that also sounds like a possibility. I'm realizing months after going off gluten just how long I've had symptoms.

 

GFinDC, I don' think I'm necessarily allergic to red meats, they just have more fat (usually) and cause me to have gallstone attacks. I can still handle the rare pork, burger and such, but I'm so used to sticking with poultry and fish that it's esier for me to just drop most beef from my diet.

[luvrdeo]

I've had to go to a rheumatologist due to my joint pain - in the last year my wrists/hands have gotten so bad!  I live off of DoTerra's Deep Blue rub, because no x-rays or blood tests can explain why I'm hurting so bad. 

[NoGlutenCooties]

I found this interesting:  Open Original Shared Link

They suggest that if you are continuing to have joint pain to try cutting out the "gluten free" processed foods because they can still contain minute traces of gluten.

[GFinDC]

Noglutencooties, that also sounds like a possibility. I'm realizing months after going off gluten just how long I've had symptoms.

 

GFinDC, I don' think I'm necessarily allergic to red meats, they just have more fat (usually) and cause me to have gallstone attacks. I can still handle the rare pork, burger and such, but I'm so used to sticking with poultry and fish that it's easier for me to just drop most beef from my diet.

 

Well, that's better than a red meat allergy then!  Have you tried eliminating nightshades yet?  Peppers, potatoes, tomatoes and eggplant are the common food nightshades.  They contain alkaloids that some people can't process well.    I had joint pain pop up recently after taking rhodiola for a couple weeks.  I suspect the pills I had were contaminated with something, tho I don't know what.  I have taken rhodiola a few years ago and had no joint pain problems then.  So supplements can be another possible problem it seems.

[pr40]

Welcome Nicole, Kathy and Gwynann!

 

For me, when diagnosed my digestive symptoms improved, but my joint and muscle pain got worse.  If your pain continues, you should be tested for other autoimmune disorders, minimally for inflammation.

 

One very good tool is a food/symptom log.  Other foods can contribute to joint pain.  A log can often help reveal other food sensitivities.

 

The foods in the nightshade family (tomato, potato, eggplant, peppers) often contribute to joint pain. 

 

For some of us it simply takes a long time after complete gluten removal for the digestive system to heal.  Make sure there is no gluten in your diet...many of us become more sensitive to minute amounts of gluten from cross-contamination or eating gluten-free items at restaurants that are made along side gluten containing items, etc. 

 

Hang in there

I am with Lisa and want to add casein as a possible cause of your tendon and joint problems. only when I went off dairy and nightshades, as well as gluten free of course, did I see improvement. good luck