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Anyone Suffer From Neurological Symptoms?


Maddi

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Maddi Community Regular

You guys... this really means a lot to me. I usually eat a banana a day, if not half. But I will definitely eat at least one a day now! I knew bananas were good but didn't know they we that good for the digestive system. And I'm juicing carrots, an apple, and celery in the mornings. At least that way I'll get nutrients somehow especially since now I have Epstein's Barr. /: I was complaining about my night vision and I started jucing carrots 4 days ago and I can see so much better at night!!!!! Honestly if someone told me that I wouldn't believe them! And my gastro a while back told me about pureeing my food if I was really worried about my weightloss. That way it'll be easy to digest. I might do that until I get rid of this virus. Apparently my neuro symptoms could be related to the Epstein's Barr virus! Hopefully I can kick this virus' butt quickly!


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bartfull Rising Star

Sounds like you are on the right path, Maddi, and taking control. I predict that you are going to be feeling better very soon and gaining weight too. :)

Maddi Community Regular

Thanks for your positive vibes!!! And know I'm sending some your way too! (: I'm trying to stay positive through allll this tiredness that I'm feeling at the moment!!!

MomBTired Newbie

Hey, I actually have some answers for some of you. My son has Celiac, horrible pain, muscle spasams and twitches like crazy, went through 14 crazy doctor years with him and it took that one neurologist who said, of course he's a mess, more than 60% of people with Celiac disease have small fiber neuropathy. His nerve/skin biopsy came back positive. Celiac and neuropathy DO go together. This doctor told me if you have Celiac, it's not Fibromyalgia, it's this form of neuropathy. Years ago, he had a colonic manometry which showed the nerves were not functioning in his colon, so it eventually was removed. No one tried to figure out why. All this is rare in pediatrics. How rare? We didn't know he had Celiac until he dermatitis herpetiformis showed up. Pediatric derm never treated it before, gave him methemaglobinemia. Switched his meds then tore up what was left of his gastro system. Switched hospitals for derm and told her creams only. I had enough.

 

So after it all, my son has Vit D deficiency, iron deficiency, Celiac, DH, asthma, GERD, Small Fiber Neuropathy, recently positive for autonomic dysfunction (autonomic Neuropathy), Hashimoto's disease, POTS, sleep apnea, PTSD (not sure why, dorks!), throw in a little anxiety problems. All found positive in tests. Now with the gastro issues, my son has had more scopes than an average 80 yr old. He didn't come up positive with Celiac until almost 3 years ago. That was around 10 years with negative results. Now he's so extremely sensitive he breaks out with the blisters.

lol Newbie

I discovered I had a gluten intolerance (sensitivity?) after suffering neurological symptoms, mainly tingling of my extremities and finally my face.  (I'm 66 years old.) With the help of a naturopathic doctor, three months off gluten and all symptoms disappeared.  My GI doc wanted to biopsy for celiac disease, so I went back on gluten for 3 months.  All my symptoms returned, but the biopsy was negative.  I hadn't had any digestive issues, so I was sure the test would be negative.  I had already been off dairy for a year due to respiratory symptoms.  Now, nearly 2 years later I continue to do well--but have developed GERD symptoms that are primarily shortness of breath--not heartburn!  Just saw some of these issues in these postings, so thought I'd put in my 2 cents!  I certainly feel fortunate to have such a mild problem compared to everyone here!

Maddi Community Regular

MomBTired: Wow your son seems to have a lot of issues which who knows if they were caused by a delayed diagnosis! /: That's what I'm afraid of. My problems have gotten worse. They started to be gastrointestinal and now they're neurological. I now have a virus which I know is bc of my low immune system. Hopefully your son now is doing better. I plan on seeing a new gastro and after I get over this virus I might try the gluten challenge again. My dad is going tomorrow to get tested. I'm also going to encourage my grandmother to get tested (she has hypothyroid and "ibs"). You've given me hope that I'll eventually get a diagnosis after 2 1/2 years. Thanks so much. It helps me to know I'm not the only one who has struggled to get a diagnosis.

Maddi Community Regular

Lol: Thanks for your response. I guess it's something to think about since glutem intolerance has a lot of the same symptoms as Celiac. Unfortunately my symptoms are are over the place and honestly I really think it's Celiac only bc of my weight loss and pretty bad immune system. Last year I got so many infections and now I have Epstein's Barr. /: I'm glad your symptoms disappeared and I hope with time mine do too with a strict gluten-free diet. (:


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    • trents
      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.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      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
      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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