Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Newly Diagnosed with Celiac / New Peripheral Neuropathy Symptoms / Will they go away?

ChantalTG
 Share

Recommended Posts

ChantalTG Rookie
ChantalTG
Posted

Started having peripheral neuropathy type symptoms in my hands in late January along with dizziness and exhaustion. I thought I was dying. After 3 weeks went to the ER. Dr suggested that it might be anxiety. I realized he was right. A lot of the symptoms went away including the feeling in my hands. I did all the things I could think of for anxiety. Got a therapist, naturopath, meditation, massage, etc. Couldn't quite get it under control. Then after a month I got hit with crazy pelvic pain. Right as this happened I first started having some classic symptoms like pale bm's, diarrhea, constipation. The pain threw me over the edge, every said it was all anxiety induced and I agreed to starting and SSRI Lexapro. It has somewhat helped flatten out my anxiety but has made me feel very lethargic. Got a celiac diagnosis 9 days ago and have been gluten free since. Pelvic pain started to let up after a week. BUT! Just started having discomfort in my hands a few days ago. At first it felt like I was about to break out in a rash, now it is cold, achy, itchy and pin prickles. Feels like my forearms are cold and achy as well. What is going on? Is this normal to start up within the first week of going gluten free? What are peoples experiences with this? Will this get better or worse? I am not sure what to do. Love some advice. 

I know B 12 effect this. My B12 was fine in January. Just got it checked again today and waiting for results. I can't imagine it has crashed since then. Any other deficiencies to look into? 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

It definitely sounds like you have some nutrient deficiencies caused by probably caused by malabsorption due to flattened villi in your intestines. You may need to take a good multi-vitamin/mineral supplement, and Kirkland makes a decent one sold at Costco, and there is also One A Day brand. Talk to your doctor about this, but also have a look at the article on this topic below.

It sounds like you may also have dermatitis herpetiformis, which is the skin condition associated with celiac disease. 

Hopefully you understand the gluten-free diet, and have been 100% gluten-free. This article may help:

 

trents Grand Master
trents
Posted

Have you been checked for anemia? You should probably be on a B-complex, Magnesium glycinate, D3 and zinc. Make sure all vitamins and supplements are gluten free.

ChantalTG Rookie
ChantalTG
Posted
  • Author

 

I am confident that I have been 100% gluten free in the past 9 days. 

My hands feel itchy but I don't have a rash. I am not anemic because my hemoglobin is good. But I am waiting for an up to date iron results. My iron could be very low regardless of my hemoglobin. 

So are you folks suggesting that deficiencies are the most logical culprit causing the PN symptoms?

Do these symptoms often clear up as you go longer and longer gluten free? 

I am feeling really scared. 

Scott Adams Grand Master
Scott Adams
Posted

I think you may want to read through that article and see if some of the symptoms of certain deficiencies match yours, and perhaps ask your doctor to test you for various nutrient deficiencies. In general, taking a good multi-vitamin/mineral supplement is often recommended to celiacs, especially when newly diagnosed.

ChantalTG Rookie
ChantalTG
Posted
  • Author

Hi Scott. Thank you. I really appreciate your time. You are amazing for being such a rock on this forum. I will read through the article. It is just so far it seems my levels are within range. Again we will see what the newest results come in at. Maybe 'within range' isn't always good enough and I need to up them regardless. It is easy to feel doomed when you are being hit with so many symptoms. I would love to know if others had this peripheral neuropathy type symptoms come at the beginning and go as they got further down the road. 

trents Grand Master
trents
Posted

PN is a common spinoff for celiacs and also for some with NCGS. It may be the result of nutrient deficiencies or some more direct toxic effect of gluten in the nervous system. We don't really know what the connection is in many cases. There is a lot we don't know about the negative impact mechanisms of gluten on our systems if we have intolerance/sensitivity to it. Another example is elevated liver enzymes that occur in about 20% of celiacs. We don't know why. But we know is that gluten-related neuropathy is a common collateral condition in the gluten intolerant/sensitive population. On a strict gluten-free diet it can be entirely corrected but for some it isn't entirely corrected, perhaps because damage has been going on for too long.

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

Celiac.com Sponsor (A8-M):


Sonja McC Newbie
Sonja McC
Posted
1 hour ago, ChantalTG said:

 

I am confident that I have been 100% gluten free in the past 9 days. 

My hands feel itchy but I don't have a rash. I am not anemic because my hemoglobin is good. But I am waiting for an up to date iron results. My iron could be very low regardless of my hemoglobin. 

So are you folks suggesting that deficiencies are the most logical culprit causing the PN symptoms?

Do these symptoms often clear up as you go longer and longer gluten free? 

I am feeling really scared. 

If only 9 days gluten free, it may take awhile longer.   Ensure all your food items are gluten-free.  Gluten hides and you maybe sensitive to cross contamination .  Don’t  share toasters, use your own cutting board etc … Try and not eat out for awhile and perhaps stay away from processed food.   Your body is adjusting .. don’t  be scared and allow yourself to rest 💜

ChantalTG Rookie
ChantalTG
Posted
  • Author

Results are in. So it looks like all my iron and b 12 levels are normal. I don't know where that leaves me with the PN symptoms. I am hoping that getting some supplements going and time gluten free will resolve it. 

Russ H Community Regular
Russ H
Posted
25 minutes ago, ChantalTG said:

Results are in. So it looks like all my iron and b 12 levels are normal. I don't know where that leaves me with the PN symptoms. I am hoping that getting some supplements going and time gluten free will resolve it. 

A good multivitamin and mineral tablet everyday for the first year. That said, the evidence points to gluten induced neuropathy being caused by a direct immunological attack rather than vitamin deficiency. Stick with a strict gluten-free diet. As your antibody levels fall, your symptoms should improve.

Vicrob Apprentice
Vicrob
Posted

Hi. I’ve been gluten-free 10 months. I have gluten ataxia. My PN had gone away but it’s back. I’ve an appt today with neurologist. My muscles are spasming and weak. My vision is blurry and I feeL like I’m fading. I’m hoping it’s vitamin deficiency. I will update after todays appt. I feel very low as I was doing so well. I haven’t been taking supplements but I will from now on. I didn’t know gluten ataxia affected absorption but it does. I’m very scared too Incase it’s another immune disease. I have changes in my cellebrum which account for my balance issues. I feel like I’ve been poorly forever (10 years) until diagnosed. I’m U.K. and it’s so hard to even speak to a doctor - 3 week wait for a call back. 

trents Grand Master
trents
Posted
3 minutes ago, Vicrob said:

 I didn’t know gluten ataxia affected absorption but it does. I’m very scared too Incase it’s another immune disease. 

Can you document that? I think if anything it's the other way around.

Vicrob Apprentice
Vicrob
Posted

Hi I’m not sure what you are asking? An ataxia nurse spoke to me last week - she works at the ataxia centre where I was diagnosed. I suggested my vitamins could be low and she said yes, gluten ataxia patients often have low vits. I’ve been low on vit D before and felt much like this - but this time I have peripheral neuropathy. 

trents Grand Master
trents
Posted
8 hours ago, Vicrob said:

Hi I’m not sure what you are asking? An ataxia nurse spoke to me last week - she works at the ataxia centre where I was diagnosed. I suggested my vitamins could be low and she said yes, gluten ataxia patients often have low vits. I’ve been low on vit D before and felt much like this - but this time I have peripheral neuropathy. 

My point is, you said "I didn't know gluten ataxia affected absorption', implying that the symptom (ataxia) was a contributing cause to the underlying disease (malabsorption of nutrients) when it would seem to be the other way around.

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
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,040
    • Most Online (within 30 mins)
      7,748
    Nola TammyB
    Newest Member
    Nola TammyB
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
×
×
  • Create New...