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The past month or so I've been getting tingling and numbness in my hands, they also get very cold and my legs turn weird colors in the shower. I've also had thrombophelbitis this past month--never had it before

My Dr thinks its Raynauds. Is it usual for this to show up after being gluten free for almost 6 months? I would get the tingling before at the grocery store when my hands would get cold but now it happens more often.

My cardiologist put me on a calcium channel blocker for my irregular heart rate and said this would help with the tingling as well but I'm wondering if I need to be evaluated for another AI issue?

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It very well could be Reynaud's as those are symptoms of it.  Do your hands/fingers become blanched (turn white) when exposed to cold? When the circulation comes back, they turn brick red.  That was my biggest symptom.  However, after a while on the gluten-free diet, it calmed down and barely bothers me anymore......except when I do winter sports in the cold.  I find that when I get my heart rate up from exercise, the blood gets flowing and everything improves dramatically.  There is no test for Reynaud's (that I know of) so its mainly diagnosed via symptoms.

 

You know, Lori, all of your symptoms are most likely from Celiac and you need to give the diet more time.  I am sorry the doctor wanted you on meds because irregular heartbeat is a well known problem with gluten issues.  Your weight is an issue also and can cause that.  Trust me, I was a mess also at diagnosis and for awhile beyond that but it all got better after a couple of years on the diet.  Once you gain some weight and are gluten-free for a set time, it should all be better...you must believe that.  Be wary of doctors who symptom treat because you don't need meds interfering with your recovery.  Keep eating good quality protein and eat often. Your heart is a muscle and needs protein for nourishment. Do not go long periods of time without food. It makes a difference. It took me a total of 3 years before all my symptoms went away so keep that in mind.

 

Another thing I did was drink Pedialyte, for the electrolyte balance. Gatorade sucks, as far as I am concerned, and the Pedialyte was far more palatable. You need to do this because your weight is too low. 

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I've been making protein smoothies with full fat yogurt, pb, banana, whole milk, and gluten-free oats. I'm really trying! My GP doesn't want me on meds either, he wants me to include salt in my diet as well. But, at my stress test appointment my hr was 140 before even stepping on the treadmill and that's why the cardiologist put me on the calcium blocker. They said I was having a fib. I go back this Friday for follow up so we will see if the meds were just a temporary fix to get the hr down.

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Have you had your B12 levels checked? Low levels can cause numbness and tingling in the hands and feet.

Did this start around the same time you started the smoothies? If so you may not tolerate gluten-free oats and that may be causing the symptoms.

I have livedo reticularis which is what it sounds like is going on with your legs. In myself inflammation, gluten especially, will make the weird colors and patterns really noticeable on my arms and legs. Perhaps the inflammation from the thrombophelbitis is contributing to the coloration? Don't know but you might want to do a picture search for livedo and see if the discoloration fits what you are seeing.

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I know it can be difficult to gain weight.  I went 6 months before gaining any noticeable amount and it was only noticeable to me when I pulled my pants on and they were getting tight.  ;)   Eat whatever you want that agrees with you and is gluten free.  Is dairy OK for you.....like milk?  A banana split might be good for weight gain.  :D

 

A fib is highly connected to Celiac and many people go off meds once you start to recover.  I doubt you will be on meds for long. These are all issues I have seen many times before and most people get complete resolution to them, if they follow a strict gluten-free diet.  I am sure you are doing that so hang in there and think positive. 

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Have you had your B12 levels checked? Low levels can cause numbness and tingling in the hands and feet.

Did this start around the same time you started the smoothies? If so you may not tolerate gluten-free oats and that may be causing the symptoms.

I have livedo reticularis which is what it sounds like is going on with your legs. In myself inflammation, gluten especially, will make the weird colors and patterns really noticeable on my arms and legs. Perhaps the inflammation from the thrombophelbitis is contributing to the coloration? Don't know but you might want to do a picture search for livedo and see if the discoloration fits what you are seeing.

I will take a look.

 

I just started the smoothies and only had 2 so far with oats. The tingling started a month ago and it did come around the time of the thromobophelbitis. Before all this I would get bruising showing up for no reason then it went away for months and then out of the blue came the thrombophelbitits. Can't seem to figure it all out!

 

I had B12 checked at diagnosis and it wasn't low according to Kaiser lab, I have new insurance now so maybe I can ask to get them checked again.

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I know it can be difficult to gain weight.  I went 6 months before gaining any noticeable amount and it was only noticeable to me when I pulled my pants on and they were getting tight.  ;)   Eat whatever you want that agrees with you and is gluten free.  Is dairy OK for you.....like milk?  A banana split might be good for weight gain.  :D

 

A fib is highly connected to Celiac and many people go off meds once you start to recover.  I doubt you will be on meds for long. These are all issues I have seen many times before and most people get complete resolution to them, if they follow a strict gluten-free diet.  I am sure you are doing that so hang in there and think positive. 

well that is good news! I don't think they will keep me on meds for long, especially since these meds lower BP and mine is usually low or normal. It does tend to get high sometimes

 

I seem to tolerate whole dairy just fine. I had issues at diagnosis and switched to lactose free but since I feed my kids whole dairy (they are both very thin too) I didn't want the extra expense so I gave it a try and now tolerate it. I get the gurgles more with the low fat dairy, especially frozen yogurt :unsure:

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Lori.......you may want to read this article on Sjogren's Syndrome, particularly #5.  I also have Sjogren's but do not have the more rare symptoms.  You might want to have a blood draw and have your doctor test you for this because some of the symptoms match your complaints.  I am not sure if dry eye/mouth is one of your problems but as Sjogren's appears with Celiac for many, it might be good to be tested.  However, the antibody blood test is not always reliable. Like Celiac, you can have Sjogren's and test negative for it.

 

http://arthritis.about.com/od/sjogrens/a/sjogrens_facts.htm

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Lori.......you may want to read this article on Sjogren's Syndrome, particularly #5. I also have Sjogren's but do not have the more rare symptoms. You might want to have a blood draw and have your doctor test you for this because some of the symptoms match your complaints. I am not sure if dry eye/mouth is one of your problems but as Sjogren's appears with Celiac for many, it might be good to be tested. However, the antibody blood test is not always reliable. Like Celiac, you can have Sjogren's and test negative for it.

http://arthritis.about.com/od/sjogrens/a/sjogrens_facts.htm

That is interesting. I do get dry mouth but always thought it was dehydration. Not sure if I mentioned yet but my blood eosphonils are 11% which is high, they shouldn't be over 5%. I asked my dr about it and he said its due to allergies and asthma but at my worst asthma months they were only at 7%. Everything I read says 7% is normal with asthma and allergies but anything over is considered eosphonilla

I think something is going on with my immune system but getting Drs to listen is like pulling teeth!

In the last 2 months I've had kidney stones with infection, thrombophelbitis, increased blood eosphonils, tingling hands, and dizziness. When will they put it all together!

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That is interesting. I do get dry mouth but always thought it was dehydration. Not sure if I mentioned yet but my blood eosphonils are 11% which is high, they shouldn't be over 5%. I asked my dr about it and he said its due to allergies and asthma but at my worst asthma months they were only at 7%. Everything I read says 7% is normal with asthma and allergies but anything over is considered eosphonilla

I think something is going on with my immune system but getting Drs to listen is like pulling teeth!

In the last 2 months I've had kidney stones with infection, thrombophelbitis, increased blood eosphonils, tingling hands, and dizziness. When will they put it all together!

They won't put it all together.  They are symptom treating you.  All of your symptoms and medical woes are from inflammation.  I think I've said that about 10 times.  Don't worry about your blood work because it's perfectly normal to have elevated numbers with Celiac Disease or multiple autoimmune issues.  It means your immune system is overactive.

I have elevated numbers. Some have come down, some haven't. I don't give them a moments thought because I feel good and all my AI issues have calmed down and I have them under control....without many meds.  Except for the Restasis eye drops I use for dry eye and my thyroid hormone, I take nothing but vitamins.  I had horrible symptoms, like yourself, and they all went away after 2-3 years on the gluten-free diet. You are getting overly worried when all you need to do is be patient and heal. But don't expect the doctors to

explain all your symptoms and problems because, unless they know a lot about Celiac and don't treat your body like everything is a separate entity, they will remain clueless and keep putting you on meds. It's all they know.  When it comes to food related illnesses, they are in the dark ages.

 

You should be screened for the AI issues that are common to Celiac, which you have some symptoms for.  That would be a good start!

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