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

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

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~

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

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

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

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

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
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

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

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

KaitiUSA Enthusiast

I use alot of CoverGirl lipstick and Bare Escentuals too

hineini Enthusiast

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,741
    • Most Online (within 30 mins)
      7,748

    Kaz 1
    Newest Member
    Kaz 1
    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

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.