Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Say That Someone Has Experienced This!

rutland

Recommended Posts

rutland Enthusiast
rutland
Posted

I went gluten free about a month ago. I noticed improvements in the way I feel but I swear there are days that I feel worse on the gluten-free diet. Im wondering if this is a detoxification effect. Heres what Im experiencing... I wake up in the morning from a good nights sleep and feel like a ton of bricks, it takes me forever to venture out from the sheets. As the day goes on my legs feel so weak and heavy and every movement is an effort, like Im walking in quicksand. My muscles feel like jelly at some points of the day and others they feel fine. I get tingling sensations in my extremities and last night my hand went numb. I fear it could be MS.

Does anyone else get muscle weakness and tingling sensations? It seems that these symptoms appeared when I went gluten-free. Although other symptoms are clearing up since gluten-free.

Has anyone experienced a worsening of symptoms after implementing a gluten-free diet? Is this a detoxification process?

Steph

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lorka150 Collaborator
lorka150
Posted

It could be MS, yes.

I am quite MS savvy, as I've grown up with it with three immediate family members of mine having it (I don't). However, my whole life I have had neurological symptoms (including what you've described), and had numerous MRIs, and so forth. I don't have MS (yet! ha), but my symptoms mimic a lot of them. It wouldn't hurt to get tested for it.

Guest ~jules~
Guest ~jules~
Posted

I have no clue what this is, but yes my hands tingle and itch like crazy sometimes when I am sleeping. My legs also cramp up to the point that its very painful, and the muscles lock. Sometimes I have the cramps so bad the next day my legs actually hurt. I'm thinking its all realted to this disease, alot of the symptoms I have had I just wrote off, but now I can see that they are related to what I have. Hope you start feeling better :) Julie

RiceGuy Collaborator
RiceGuy
Posted

I also have been experiencing such symptoms, but recently I discovered a definite link to nightshade foods, and eliminating those is helping tremendously. It has been a few weeks since then, and the recovery continues - generally a bit better day-by-day. Here's a link on the subject I highly recommend: Open Original Shared Link

TriticusToxicum Explorer
TriticusToxicum
Posted

I'm no expert, but I'll throw my 2 cents in anyway. Have you had any bloodwork done recently? It could be something as simple as an electrolyte imbalance. Your nervous system depends on a balance of electrolytes to function properly. If your intestines were severely damaged you may not be absorbing the vitamins and minerals that you need to maintain this balance.

I know when I was first diagnosed I would be exercising and about 1/2 hr into it my feet would feellike they were asleep and I would start to feel crampy in my calves and I'd feel sort of "heavy" all over for some time afterwards. I checked with my doc and he whe he got the results of my bloodwork he confirmed that my vitamins & minerals were low. If i remember right calcium and b vitamins are fat soluble, and with celiac the body doesn't process fat as it should leaving us deficient of some crucial vitamins and minerals.

MS is always a possibility, but I think you should check out your bloodwork before making the leap to MS.

KaitiUSA Enthusiast
KaitiUSA
Posted

I felt worse before I got better. It took me a long time to finally get back to normal. For some people it takes a while so hang in there. Make sure your products like makeup are also gluten free because even the smallest bit you ingest can cause you alot of misery. Also, maybe you should get a full celiac panel done because blood tests are used to monitor compliance with the diet and if it is still high then maybe that should tell you somehow you are still getting gluten and that may be prohibiting you from getting better quicker.

plantime Contributor
plantime
Posted

If you are taking any statin drugs, it could be side effects from it. It could also be vitamin/mineral deficiencies. Have you had your levels checked recently?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


rutland Enthusiast
rutland
Posted
  • Author
I'm no expert, but I'll throw my 2 cents in anyway. Have you had any bloodwork done recently? It could be something as simple as an electrolyte imbalance. Your nervous system depends on a balance of electrolytes to function properly. If your intestines were severely damaged you may not be absorbing the vitamins and minerals that you need to maintain this balance.

I know when I was first diagnosed I would be exercising and about 1/2 hr into it my feet would feellike they were asleep and I would start to feel crampy in my calves and I'd feel sort of "heavy" all over for some time afterwards. I checked with my doc and he whe he got the results of my bloodwork he confirmed that my vitamins & minerals were low. If i remember right calcium and b vitamins are fat soluble, and with celiac the body doesn't process fat as it should leaving us deficient of some crucial vitamins and minerals.

MS is always a possibility, but I think you should check out your bloodwork before making the leap to MS.

Im sure your right. I dont think Im absorbing enough nutrients to support nervous system function. I guess its just a matter of time that I do. I know that I get heart palpitations a clear sign of electrolyte imbalacne. Thanks for the insight. :)

Kaiti, do you know of any lipsticks that are gluten free. So far Ive heard that Avon, lancome, OPI, and bennefit, do you know of any others?

tarnalberry Community Regular
tarnalberry
Posted

The first thing that comes to mind is a nutritional problem - vitamins/minerals that you may be missing. Are you taking a good multivit, getting a well-balanced diet full of produce and b-vits? Have you been tested for nutritional deficiencies? It could be other things, but it's most useful to go after the most common first.

jerseyangel Proficient
jerseyangel
Posted

A lot of Neutrogena lip products are gluten-free. I use the Moisture Shine Lip Gloss.

KaitiUSA Enthusiast
KaitiUSA
Posted

I use alot of CoverGirl lipstick and Bare Escentuals too

hineini Enthusiast
hineini
Posted

I have many of those symptoms, too - Neurological exams have ruled out MS. I have been told I have Fibromyalgia (FMS), Allodynia and Migratory Parasthesias. I wouldn't be shocked to find out that some of the numbness and tingling were due to malabsorption problems (I've never been tested for B12 deficiency but plan on asking to be tested soon since it's common in both celiac disease and FMS) or due to Celiac Disease... But I haven't been diagnosed with celiac disease yet so I don't know.

The nervous system is whacky - That's the one thing that being sick for 6 years with all kinds of neurological dysfunction and pain has taught me. I would highly recommend seeing a GP and asking for a referral to a neurologist, to screen out MS and also investigate FMS and other neurological issues.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jay Heying
      - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    2. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    3. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    5. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,885
    • Most Online (within 30 mins)
      7,748
    KateFC
    Newest Member
    KateFC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jay Heying
      Celiac friendly probiotics

      By Jay Heying · Posted

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.