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Any One Here Have Foot Pain When They Eat Gluten?

Lynayah

By Lynayah
in Coping with Celiac Disease

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ang1e0251 Contributor
ang1e0251
Posted

You'll find the thread under "Other Food Intolerance and Leaky Gut Issues". It's called Specific Carbohydrate Diet (SCD). If you read parts of it, they do recommend web sites and books. I haven't read the books yet but have looked at some of the sites. It's good. I'll defer to the SCD experts on that thread.

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Lynayah Enthusiast
Lynayah
Posted
  • Author
You'll find the thread under "Other Food Intolerance and Leaky Gut Issues". It's called Specific Carbohydrate Diet (SCD). If you read parts of it, they do recommend web sites and books. I haven't read the books yet but have looked at some of the sites. It's good. I'll defer to the SCD experts on that thread.

THANK YOU, THANK YOU!

Hugs,

Lyn

Penny-M Newbie
Penny-M
Posted

I have suffered from foot pain for many years and I was diagnosed with Tendonitis in both my feet. GEE tendonitis--Inflammatory condition. I do believe it's connected with all the other inflammatory issues I have. Everything I have tried so far hasn't helped, I wear rubber soled shoes, I have found earth shoes to be the best, the ones from Walmart are pretty good as well. The selection stinks though. Planet earth has some nice soft soled shoes. I am hoping this new anti-inflammatory lifestyle I am adventuring into will help. Everyone tells you to exercise--I wish I could, but no matter what I try my feet kill me, even walking is a challenge, I am glad I have a desk job. I have a wonderful husband who massages me feet everynight before I shower or bath--He's the greatest!!!! :D

Lynayah Enthusiast
Lynayah
Posted
  • Author

I'm still healing -- only gluten free for a few weeks now with a couple set backs.

Last week I was glutened and the neurological twinges in my feet and ankles were strong. It's weird, in addition to the tops of my feet hurting and ankles swelling, I'll get a kink that comes and goes -- when it is present, it feels as though I have a light sprain in my ankle, and it can stop me cold. Sometimes it lasts for days, other times it comes and goes over the course of hours. During my gluten challenge, it became stronger over time.

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    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      "Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies should remain in your system and you don't have to eat gluten (i.e., blood test last year). Hence my posting on finding a good doctor.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would tell you that you must avoid gluten and given the test results you already have, the logical conclusion is NCGS. As I said, an NCGS diagnosis is arrived at by first ruling out celiac disease, which seems to have been done. Then you could go back to that doctor with the other evidence component (improvement of symptoms with gluten-free eating) and ask if he/she would now be willing to declare an official dx of NCGS and give you a note. Or, you could book an appointment with another doctor who could look at your test results online, together with symptom improvement after going gluten-free, who might be more cooperative. I would seek out a younger practitioner as they are more likely to not be operating on outdated info about gluten disorders. By the way, NCGS is about 10x more common than celiac disease. 
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      Thank you for clarifying the terminology. Based on what my doctor told me, I understand that I do not have celiac disease, but that I’m “likely gluten sensitive.” From what I’ve researched, that places me in the category of Non-Celiac Gluten Sensitivity (NCGS)—as you mentioned, the key difference is that with NCGS there are no damaged villi and no positive celiac-specific antibodies. Either way, my treatment is the same: follow a gluten-free diet to avoid feeling sick. My understanding is that there are three main issues related to gluten: 1. Celiac Disease (produces specific antibodies and damages the small bowel) 2. Wheat Allergy (an immune response to wheat proteins) 3. Non-Celiac Gluten Sensitivity (negative celiac tests but still symptomatic from gluten) Regarding tax breaks or workplace accommodations, I came across a statement from celiac.org (https://celiac.org/gluten-free-living/federal-benefits/tax-deductions/) indicating that having any formal diagnosis—celiac disease or non-celiac gluten sensitivity—plus a prescription from a physician is typically required to qualify. In my case, my goal is to avoid feeling sick and secure documentation for both work and potential tax benefits. If I do pursue further tests or get more detailed lab results, I’ll share those here to confirm whether the doctor is suggesting celiac disease or truly NCGS. But as of now, the doctor’s comments lead me to believe I fall under NCGS.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what you mean when you say your doctor told you that your are likely "gluten sensitive". The actual medical terms for these two gluten disorders are: "celiac disease" and "Non Celiac Gluten Sensitivity" or NCGS for short. The test you had run by the GI doc are intended to check for celiac disease. There is no test for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out.  Because these terms are used by many people interchangeably I'm not sure that your doctor, after running the tests, was intending for you to understand that he believes you have celiac disease or NCGS. So, to clear up the confusion, can you post the results of your blood test, not just the test scores but the reference ranges used by the lab analyzing the blood sample to determine negative/positive or normal/high? The difference between celiac disease and NCGS is that celiac disease damages the lining of the small bowel over time whereas NCGS does not. However, they may share many of the same gastro intestinal symptoms. Both need to be addressed with a gluten free diet but the tax breaks and work place accommodations you speak of would likely only accrue from an official celiac disease diagnosis. So, can you post the blood test results along with the reference ranges and also the endoscopy report. We can help you decipher whether or not the doc was suggesting you may have celiac disease or NCGS if you will do that.
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      I recently had an upper gastrointestinal endoscopy and blood tests, and my gastroenterologist concluded that I’m “likely gluten sensitive.” However, they wouldn’t provide a prescription or a formal doctor’s note—just a test result saying I’m likely gluten sensitive, along with the advice to avoid gluten. I’m frustrated because I know that proper documentation could help with tax breaks for gluten-free foods and even workplace accommodations. I’m also not willing to go through another gluten challenge—it was rough! Does anyone have recommendations for a doctor (U.S. based preferably Texas) who is more understanding and willing to provide the necessary documentation for gluten sensitivity? I’d really appreciate any suggestions!
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