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Cervical Spine Lesion Caused By Celiac, Ms, Lyme, What?

rachelgp

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rachelgp Newbie
rachelgp
Posted

Hi, I'm new.

I'm having neurologic symptoms, no stomach symptoms. MRIs show 1 (maybe 2) lesion on cervical spine, 2-5 small non MS lesions on brain, Spinal fluid negative for olligoclonal bands. Bloodwork returned one celiac test as barely elevated.

Historically I have eaten LOTS of processed whole wheat bread, which always has extra gluten added to it.

No EGD done because 1. I am nursing and 2. I have concern with being put under anesthesia, when we do not know what is wrong with my CNS.

Question 1: Can eating too much gluten give you an elevated blood level?

Q2. Besides an EGD, what other tests are done?

Q3. What are the best three cookbooks or other resources for how to go gluten free?

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

There are quite a few celiacs around here who had no digestive issues at all.  Neuropathies, ataxia, anxiety, anemia, are among a pretty big list of symptoms that a celiac can have.  I've seen a few with MS like brain lesions too (search the forum for that). I had some stomach issues but headaches, fatigue, arthralgias, and fatigue were some of my worst symptoms.  I'm impressed that you, or your doctor, thought of celiac disease as the cause - not many make that connection to the foods we eat.

 

As for your questions:

 

Question 1: Can eating too much gluten give you an elevated blood level?

A celiac needs to be eating gluten to have a positive blood test.  Gluten is the trigger that causes elevated levels of autoantibodies.  Once a celiac is gluten-free for a time (weeks months or years) their blood work will return to normal - that;s when you know you are truly healing.  

As a general rule, a positive blood test means that you have celiac disease, even if it is just slightly elevated.  Think of it like a pregnancy test, a weak positive is still a positive.  That being said, a weak positive tTG IgA can, in a small minority (<5%) of cases, be caused by thyroiditis, diabetes, chronic liver disease, crohn's, colitis, or a serious infection, but 95% of the time it is caused by celiac disease.

 

This reposrt shows the stats on page 12: Open Original Shared Link

 

Q2. Besides an EGD, what other tests are done?

Celiac can be discovered by an endoscopic biopsy or by blood test.  The blood tests can miss people (up to 25% of celiacs) so it is a good idea to have a bunch of tests done... Actually, the endoscopy misses up to 20% of celiacs too so ensure at least 6 samples are taken.  Anyway, the full celiac panel is:

  • ttG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA  (control test)
  • AGA IgA and AGA IgG (older and less reliable tests)

You need to be eating 1-2 slices of bread, or the equivalent, in the 8-12 weeks prior to the blood tests, and 2-4 prior to the biopsy.

 

Q3. What are the best three cookbooks or other resources for how to go gluten free? 
I really liked Dr Greens book, The Silent Epidemic.  Many people like Celiac for Dummies, Dr Fasano's books, and Esposito's My Way are also popular books.  For recipes, I like Google and this forum, and the occasional book from the library.
 
Best wishes to you. I hope you find answers soon.
SMRI Collaborator
SMRI
Posted

What tests were done and what were your results?

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you may  have gluten ataxia where the antibodies attack the nervous system. The brain lesions may be UBO's which are similiar to MS lesions and associated with celiac. Unfortunately most neurologists are not aware of this. Mine wasn't and it delayed my diagnosis by years. After you are done with all celiac related testing do go strictly gluten free keeping in mind that it can take a long time for the neuro symptoms to resolve. 

If you do a search on UBOs the NIH has some good articles about them that you can share with your neurologist. 

rachelgp Newbie
rachelgp
Posted
  • Author

Thanks All for the great info!

I stopped eating gluten on Saturday. I had some gluten on Tuesday because I was SO hungry and haven't prepared my cupboards very well for gluten free. On Wednesday, my right leg was tingly and numbish, so I stopped gluten again. Today leg is fine, but what is the most interesting to me is: my scalp has been a little numb constantly for over 2 years. Wednesday it started to get itchy and I am starting to feel pain on my scalp again!

Do people respond this quickly from going off of gluten and from adding it in?

ravenwoodglass Mentor
ravenwoodglass
Posted

Please don't stop eating gluten until all celiac related testing is finished. An endo would be the next step. If you could post the tests you have had, as another poster requested, that would help us help you better.

Have you had your B12 levels checked? Deficiencies are pretty common for us and low levels can cause that tingling. What type of neuro symptoms are you having other than the pins and needles?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
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