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

Trying to be patient

PA Painter
 Share

Recommended Posts

PA Painter Apprentice
PA Painter
Posted

Hello everyone! Reading some experiences here has been so helpful I feel responsible to share my own so far. I am pretty sure I have been having mild gluten and food related reactions my whole life. I could never figure out what was happening, didn't know what they were, didn't know what caused them, didn't know why I sporadically felt like poop for 3-5 days, and I didn't know how to make it stop. It was/is a miserable existence. The main symptom was always mind bending migraines. There is not an opiate on Earth that can touch this headache. The pain can be dulled slightly with heavy pain meds but proves pointless ultimately. The only relief I could find was in a hot shower. I lived in the shower many days. This is after tired of being told by doctors to take Sudafed to alleviate my "sinus headaches". lol...

This progressed until I started getting GERD which was manageable with prilosec but continued having random reactions with headaches and the eventually extreme arthritis. 

 

The GERD progressed to the point of breaking through the prilosec treatment. I continued on like this for some time and now have problems swallowing due to waiting so long to address it. Everything I ate gave me violent acid reflux. Out of desperation I gave up gluten. I did not expect the gluten to be my problem. I noticed major relief on day two. I continued to refine my diet and found many things that directly affected my arthritis and headaches. I have eliminated a lot of food that does bad things to me. I have not been fully diagnosed because I had gluten eliminated before going to the doctor and; therefore, do not have gluten antibodies. I do have one of the genes that indicates celiac. I am having a clonoscopy/endoscopy Friday. In a way I am upset for not being able to ID this issue sooner. I feel like damage has been done. In another way, I am so relieved because now I can finally start to recover from whatever IT is.

 

Coffee zaps the CRAP out of me, At times it directly caused major neuropathy pain in both middle toes on both feet and both pinky fingers. It doesn't take long to kick in. I know it is the coffee. This never happened until 8-10 weeks after eliminating gluten. It was an excruciating burning and stabbing pain in the middle of the knuckle joints. IDK if it's the coffee or caffeine. This effect seems to be waning the longer I stay gluten free. I regrettably continued to drink coffee factoring other possibilities out first. Ultimately after eliminating coffee the neuropathy pain stopped almost completely in one day with very mild discomfort since.

 

With all of this, it is difficult not to speculate. I have a endoscopy/clonoscopy tomorrow. 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

How did your tests go? It seems you've been gluten-free for a while now, so hopefully you understand that, just like the blood tests, your endoscopy (if for celiac disease), will likely be negative for celiac disease, because you've been gluten-free for so long. To be screened for celiac disease you would need to be eating gluten daily for weeks, which, given your symptoms, it sounds like you might not want to endure.

PA Painter Apprentice
PA Painter
Posted
  • Author

The endoscopy was due to the GERD. They said my esophagus is eroded, my stomach is fine, no polyps, and 6 sample were taken from my colon for celiac biopsy. I had reached a plateau and would not get batter despite being gluten free. I had to give up dairy and begrudgingly coffee. The coffee was messing my nerves up seriously bad. It has been quite an adjustment but I am feeling better and better each day again. Giving up coffee is so difficult. 

  • 2 weeks later...
PA Painter Apprentice
PA Painter
Posted
  • Author

They said no celiac. I still can't eat gluten it messes me up. I am having severe neuropathy. I tried whey protein isolate again after the results and got a nasty neuropathy flare that is now on day 5 from a fourth of a serving. My doctor refuses to acknowledge gluten sensitivity or it's symptoms. He asserts that I am healthy. I don't understand why whey protien set off neuropathy so bad. He referred me to some nerve test. I am so sensitive that "gluten free" frozen diners give me tension headaches. I have been 100% vigilant on this ridiculous diet because of the incredible headaches, joint aches, brain fog etc. I love spaghetti. This is crazy my doc doesn't care that 20% of my life has been literal misery. If I go have a slice of pizza I will have to take off work, yet nothing is wrong with me accordi g to this guy what the heck?

Scott Adams Grand Master
Scott Adams
Posted

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

I had gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

PA Painter Apprentice
PA Painter
Posted
  • Author

Right now the only symptom I have is peripheral neuropathy and extreme fatigue. I am on an extra vigilant no bs chicken and veggies diet and feel fantastic except I can get enough sleep have stabbing/burning pains in my feet/toes. My doctor said it's impossible to have neuropathy from NCGS. He is an intern.

Scott Adams Grand Master
Scott Adams
Posted

It is not impossible to get neuropathy as a symptom from having non-celiac gluten sensitivity (NCGS). While celiac disease is more commonly associated with neurological complications such as neuropathy, there is evidence that non-celiac gluten sensitivity can also be linked to similar neurological symptoms.

Studies have reported that some individuals with non-celiac gluten sensitivity experience neurological symptoms, including neuropathy. These symptoms can occur even in the absence of the typical gastrointestinal manifestations of gluten sensitivity. The exact mechanisms are not fully understood, but it is believed that immune-mediated responses to gluten may play a role. Research has shown that patients with NCGS can have elevated levels of certain antibodies and inflammatory markers that might contribute to neurological symptoms.

In clinical practice, some patients with NCGS have reported symptoms such as tingling, numbness, and pain in the extremities, which are indicative of neuropathy. These symptoms often improve when the patients adhere to a gluten-free diet. 

The real issue is that not enough research has been done on NCGS, but here is an example of a study on NCGS which found "In addition, a high prevalence of neuropsychiatric symptoms including headache (54%), anxiety (39%), 'foggy mind' (38%), and arm/leg numbness (32%) were recorded."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053283/

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


PA Painter Apprentice
PA Painter
Posted
  • Author

Thank you for being so informative. Hopefully we get some good research soon. The NIH should be all over this, among other things.

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

  • 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. PixieSticks
      - PixieSticks replied to PixieSticks's topic in Super Sensitive People
      2

      Working in a kitchen with gluten?

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply.
    2. BoiseNic
      - BoiseNic replied to BoiseNic's topic in Dermatitis Herpetiformis
      11

      Skinesa

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It...
    3. knitty kitty
      - knitty kitty replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches. Really works well without hurting the digestive tract. Riboflavin B2 also helps with migraines. Most newly diagnosed people have vitamin and mineral deficiencies. Check with your doctor and nutritionist. If you follow the updated...
    4. Scott Adams
      - Scott Adams replied to Brianne03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Advantages vs. Disadvantages of having an official Celiac diagnosis

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    5. Scott Adams
      - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,530
    • Most Online (within 30 mins)
      7,748
    AnnmarieR
    Newest Member
    AnnmarieR
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
    • BoiseNic
      Skinesa

      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      Advantages vs. Disadvantages of having an official Celiac diagnosis

      By Scott Adams · Posted

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
×
×
  • Create New...