• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Severe Symptoms In Muscles And Nerves After Coming Off Gluten?
0

7 posts in this topic

Recommended Posts

Hi everyone! I'm new here and I'm trying to figure out this whole gluten sensitivity thing. I was diagnosed with IBS by my GI doctor. I was negative on the celiac and wheat allergy, however, I had put myself on a gluten free diet 2 weeks before tests were done which I hear will cause the tests to be negative. I just couldn't bring myself to eat any gluten for the tests because I had been so sick! The reason for the gluten free diet is because I have 3 sisters and one aunt with confirmed celiac and I thought maybe that was the problem....you know, grasping for straws. I have suffered since I was a child with stomach issues. I was adopted so my family history was a puzzle to me until recently. I now have been gluten free for 7 months and my stomach is so much better! Before my gluten-free diet had begun, my joints had been painful and my right pinky finger (weird place for this to happen) was getting very inflamed and twisted looking. Two weeks after going gluten-free the pinky finger stopped hurting and the inflamation started to get less and less. So at that point my stomach was doing great, my joint pain was going away....wow, I'm well! NOT!!! Now for the past 4 months I have been having stinging, shooting, creepy crawly feeling pain in my muscles mostly in my upper body and some even in my scalp. Some of the pain feels like I'm being stabbed with pins. I've even been to the hospital with it and I think the doctors have written me off as a lunatic. I really don't have the time or energy to be a lunatic!.... This is real pain. I just think this is strange to have pain like this after I've gone gluten-free. Someone said maybe I was detoxing. Is this common? If so, how long does it last? Or is it something else? I just want to get well. I'm so tired of the pain and not knowing what this is. I also have to worry about my grandson. He has the same problems as I do and he put himself on the diet. Very mature, I think, for an 11 year old to make that kind of decision! I just want to know as much as possible so we both can benefit. Help? Advice? Thanks!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I hope you will feel better soon.

Have you had your nutrient levels checked? Do you take supplements for any nutrient needs? Might you be taking in something with wheat in it? I have dealt with many of these in my own life. I don't have the pinprick feeling, but am numb. A doctor suggested that vitamin B12 might be short. I had blood tests and it showed I was short in B12. You might also see if you have any food intolerances causing issues for you.

Check the forum, because I have heard of odd stinging symptoms before.

Share this post


Link to post
Share on other sites

I do have my levels checked at least once a year and sometimes twice a year. I have had my vitamin D level low before and I take extra D. I also take vitamins that are supposed to be gluten free according to the label. How much to trust labels? My thyroid was borderline low at one point but it came back up. I go next week to my family doctor. I'll make sure all my levels for everything are checked. Thanks saaa-wheat<3 and 1desperateladysaved for replying! Maybe I'll find something out in my blood work. I'll let you both know what turns up. If my info could help someone else, all this wouldn't be in vain!

  • Upvote 1

Share this post


Link to post
Share on other sites

1desperateladysaved

I hope you will feel better soon.

Have you had your nutrient levels checked? Do you take supplements for any nutrient needs? Might you be taking in something with wheat in it? I have dealt with many of these in my own life. I don't have the pinprick feeling, but am numb. A doctor suggested that vitamin B12 might be short. I had blood tests and it showed I was short in B12. You might also see if you have any food intolerances causing issues for you.

Check the forum, because I have heard of odd stinging symptoms before.

I really hate the pinpricking/stinging and numbness! It drives me crazy. I'm an artist and my hands and arms are my living. If I can't use them I'm in trouble. I was thinking of having food allergy tests done but I'm not sure I want to know if there are other allergies. It's hard having to watch everything that you eat, I'm sure you know what I mean. It would mean having to add more things to the "can't have" list. I guess if I can't get this under control the way things are at present, I will have no choice but to get the testing done. But I promise it will be with much dread! I just keep telling myself "one day at a time". It gets hard though and my determination wears down when I'm tired from the pain. I will be looking at the forum for posts about the stinging. Thanks!

Share this post


Link to post
Share on other sites
Ads by Google:


ynot    0

Hi in the middle,

It's been a while since I've posted here, but I wanted to second the suggestion to consider vitamin b12. It sounds like you have a decent amount of nerve damage, which in many cases is a result of vitamin deficiencies.

I went gluten free nearly three years ago and saw about a 50% improvement in my symptoms. Over the last 6 months I've been taking B12 ( and a bunch of other vitamins ) and now I'm really beginning to feel normal. Hands no longer go numb and my overall energy is way up.

Nerves can heal. If I were you, I would order some Enzymatic Therapy B12 Infusion and take it for a month and see what happens. I named a particular brand, not because I have a monetary interest, but because when it comes to b12, brands matter and this one happens to work extremely well. I would also recommend you visit the Phoenix Rising Forums and take a look at the "Active B12 Protocol" thread.

Hope this helps.

Share this post


Link to post
Share on other sites

I had food allergy/intolerance tests done. I ended up doing what I so dreaded, namely going on a rotational diet. But it took about 4 days and my fogginess/fatigue left, I exchanged it for a calm after the storm feeling. When you focus on what you might miss, it is sad, and to be honest you will miss it. But all and all it can be such a cheerful exchange in the end! One step at a time and keep moving.

I am still numb, though. It might be improving.

Feel better soon,

Diana

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,883
    • Total Posts
      938,465
  • Member Statistics

    • Total Members
      65,788
    • Most Online
      3,093

    Newest Member
    KaitlinP
    Joined
  • Popular Now

  • Topics

  • Posts

    • Sorry to hear about the loss, bread is a pain for some, Canyon house makes one many swear by...I have 2 issues with it so I can not even try it. I been using Julian Bakery Bread for awhile, the seed one was wonderful even toast like gluten bread, while the coconut one made the most amazing french toast, and the almond one was great toasted with mashed avocado. I recent perfected a sandwich bread for my bakery, so will be making my own grain free, starch free, 1 net carb bread loafs for myself.
      NOW a bit more on this topic, I am currently converting it to a sugar free German chocolate cake loaf for testing this weekend (these are going to be bakery item only for my store)
    • Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either. Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before. If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers.   Thank you all, K
    • Thank you!   I see a Dietician early next month and figured I will need to be more strict early on.    There is so much to learn.  I am grateful for the apps available that allow me to scan UPC's to find out what is and is not gluten-free, but will be confirming by reading labels  too.   I cleared out quite a bit of space in my cupboard today.  It is only me in the house since I lost my husband earlier this year so it will be easier to control what is in the house.    He loved bread as much as me so it would have been much harder with the 2 of us here
    • Welcome to the board. Many of us keep safe gluten free snacks on hand for times when we are away from home.  In addition to what Karen mentioned fruits, nuts, hard boiled eggs etc. If it is a long trip a cooler can keep stuff fresh for you and they make ones that you can plug into your car. How were you diagnosed? Many folks carry the genes but don't develop celiac. You should have had a celiac panel blood test and an endoscopy. If you are new to the lifestyle then do check out the Newbie 101 threead at the top of the Coping section. it has a lot of info to keep you safe.
    • If you are super sensitive (or have become super sensitive) there is an oats purity protocol used by just a few companies. The fields do not grow gluten containing grains for 4-5 years before the oats are planted, the fields are walked several times a season for any plants not belonging to be pulled by hand, and all the equipment and facilities used to harvest are dedicated equipment. It's a bit pricey, but it produces the only oats that I don't react to (although I have not tried all certified gluten free oats).  There are a couple variations of magnesium. Some cause loose stools so check the source of magnesium (and make sure it's gluten-free). Calm I've used with no problem. If you are stressed, you will burn through magnesium faster.  Roommates create some complications. I had a shared kitchen for a vacation this past year, and I was constantly cleaning. I'm so used to my gluten-free kitchen I became very aware of sinks being used to pour pasta water in, bread crumbs left from a cut sandwich, and how much gluten a simple sponge can be exposed to. I kept my sponge to clean my area in a ziplock bag next to the sink. And if I was cleaning fruit or veggies, I filled a large bowl with water to use so I wouldn't have to always be cleaning the sink. If you have wooden utensils, make sure they aren't be accidentally used. A friend was getting cross-contaminated from shared condiments.  My celiac reactions for cross contamination are not gastro but neurological so I can't offer much with that. A proper glutening is the only thing that gives me gastro symptoms, and it is the most painful experience! In either case, I drink lots of water. I will drink a gallon on those days. Throw some Calm in there, but force fluids. I also use Ultima Replinisher (which I typically use after exercise) if I'm forcing fluids, and I drink mugs of warm broth if my gut is really not doing well.  Hang in there, C. Hope you feel better soon.     
  • Upcoming Events