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New to this , need some info please

Feesa

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Feesa Apprentice
Feesa
Posted

Hello everyone or anyone,

I was just told a week ago that I am Celiac....Nice news  to find out because I thought I had been dying for about 8 months. Trips to the hospital with gas pain in chest and arms. Headaches and also major energy problems. How long should or could it take to start to feel better? I know It's going to take time however I have to take pills to keep me calm. I am finding that now when I eat that the gas is worse it now sits in my shoulders and back as well as my chest...Please tell me this has happened to other people...Any info would be amazing.

 

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Ennis-TX Grand Master
Ennis-TX
Posted

I hear you, I thought I was dying going crazy, and was running a bucketlist prior to dia. My issues were a mix of it effecting my brain, nervous system, guts, etc. My primary issues was the brain fog, confusion, brain damage, nerve damage, and bad gas and constipation lasting 8-10 days.

The worst of it will pass with the gas in 2-6 weeks, it can take 6 months and up to 2 years for significant damage to heal. The issues with the stress come from the inability to absorb certain nutrients. You will have to take a b-vitamin supplement  and probably a magnesium supplement to help with them. There are many others such as folate, iron, vitamin D, etc. I would read up on them and see if these are likely to be them. You can check the links below to see what I do to manage mine and my diet.

Welcome to the forums, this is great place to find out about many of the issues associated with this disease and get help. There is a huge learning curve to the diet and you will have to clean out your house, fridge, and change a lot of things out to go 100% gluten free without contamination issues. Things will get a tad worse before they get better, you might develop other food issues or find out you have some. But in the end you will prolong your life, and after some healing start to enjoy life more and more.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

Feesa Apprentice
Feesa
Posted
  • Author

Thank you so much for this info!! I have a place to start, Like most people I was told yes you are Celiac and then nothing..I get to see the Dr in July but have been running blind with this. I am happy to see this and know if I have questions I can ask, Someone may have ideas!!

 

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  Glad you found us.  It is nice to have access to people who are in the same boat.  Ennis has provided you with some good links.  Questions?  Just ask!  

Healing?  Takes time.  Everyone is different.  

 

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    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
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      By Jane02 · Posted

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      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
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