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Neurological Damage

beachbel

By beachbel
in Related Issues & Disorders

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beachbel Apprentice
beachbel
Posted

Hello. I want to pose a question. Does anyone have any experience with nerve damage caused by celiac disease? Would anyone recommend seeing a neurologist? I was diagnosed with celiac disease 18mo ago and have been very carefully living on a gluten free diet. I have had a dietician and a person who runs our local support group go through my food, make up, etc to check for gluten and found nothing. I have found that gluten free products that are manufactured in the same plant as wheat are completely out for me as I seem to be very sensitive to cross contamination. I keep my dishes, food, etc separate from my family and wash my hands and surfaces after fixing their food. Anyhow, I am still testing positive for Celiac disease. My Ttg was 16 at last check if that means anything to anybody. I have also been diagnosed with gastroparesis, Raynaud's syndrome, and now have killer headaches from a nerve in my head. My headache started after I tried a new product that I didn't notice was manufactured in the same plant as wheat. I can no longer take any meds for the gastroparesis because I had a bad reaction to the only two available. So I am now living on a liquid diet. I never have the typical celiac symptoms. Does anyone have any ideas? I am wondering if my immune system is in overdrive. Oh, and my thyroid just tested low and my iron levels have dropped dramatically. I would appreciate any help. Thanks.

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veggienft Rookie
veggienft
Posted

Try cutting out sugar.

Open Original Shared Link

The theory is, you get a fungal overgrowth which includes fungus cells which mimic gluten protein. First you react to the fungus, and then to the gluten. You've cut out the gluten, but you haven't removed the fungus.

Gut fungus thrives on sugar. Try not eating it for a few weeks.

Good luck. Tell us how it comes out.

..

dana.naomi Newbie
dana.naomi
Posted

Yipes that sounds rough. The only thing I can say is, there's no harm in seeing a neurologist. Why not? Can you get a reccomendation from your GI?

ShayFL Enthusiast
ShayFL
Posted

Low thyroid and low iron both can cause neurological symptoms. You need to find a doctor who understands how to treat low thyroid and isnt afraid to try different meds until you find the right one(s) for you. A Osteopath or MD that leans toward holistic is best. And you will need to get that iron up for the thyroid meds to work effectively.

You are on the right track, you just have to work on a few other things.

Blessings Explorer
Blessings
Posted

Here is info on Celiac Neuropathy. Very Interesting

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

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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