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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
      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
    • Scott Adams
      I also want to mention that using prednisone would likely also make the endoscopy results invalid. This steroid will cause gut healing and could mask the damage caused by celiac disease. 
    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
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