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Newbie - Learning The Ropes

bunnybaby

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bunnybaby Newbie
bunnybaby
Posted

Hi I am new to this forum and to my condition. I was looking for help and info and stumbled on this forum and first I want to say

A HUGE thanks to all of you as I have learned so much reading these posts already and I still have loads to read.

Also sorry if I ask any silly questions along the way.

I do not know if I am celiac or wheat intolerant. I had given up wheat for 6 weeks when I had my blood test done and no way could I go back to eating it for another test it just makes me too ill. It has now been 9 weeks since I gave it up and I am still making loads of mistakes but I feel so so much better.

Right I am off to get reading again! :rolleyes:

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mushroom Proficient
mushroom
Posted
Hi I am new to this forum and to my condition. I was looking for help and info and stumbled on this forum and first I want to say

A HUGE thanks to all of you as I have learned so much reading these posts already and I still have loads to read.

Also sorry if I ask any silly questions along the way.

I do not know if I am celiac or wheat intolerant. I had given up wheat for 6 weeks when I had my blood test done and no way could I go back to eating it for another test it just makes me too ill. It has now been 9 weeks since I gave it up and I am still making loads of mistakes but I feel so so much better.

Right I am off to get reading again! :rolleyes:

Hello bunnybaby, and welcome to the forum.

You are right, there is waaay too much stuff here to be able to read it all! :rolleyes: Just pick and choose the most relevant topics for now, and happy reading. Pipe up with any questions as they arise.

MELINE Enthusiast
MELINE
Posted

Hello !!!! welcome to the forum! This is so good that you are already feeling so much better!! go on with your reading and come back with any "silly" :rolleyes: question you may have! we all did that and still keep doing it!!!!

B)

Meline

bunnybaby Newbie
bunnybaby
Posted
  • Author

:) Thank you both. I am learning so much but I am sure I will have things to ask.

Love Ruth

TearzaRose Explorer
TearzaRose
Posted

Hi, I am new here also! what a Godsend this place is! Just diagnosed two days ago...and February 21st was my first gluten-free day ever.

WOW!!! i felt great all day and again today. I hope it's not a non-related coincidence.

I'm going shopping today for lots of "specialty" items without gluten. I've already found a bunch of "normal" food that doesn't contain gluten, but some bread and crackers would be nice too!

  • 2 months later...
AlexMartin Newbie
AlexMartin
Posted

Hi! I'm new here too. I've had Celiacs for about 10 years now but its always nice to meet others. :rolleyes:

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  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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/
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
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      Water filters are a potential problem for Celiac Disease

      By Scott Adams · Posted

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      Water filters are a potential problem for Celiac Disease

      By Scott Adams · Posted

      Water does not contain gluten--bottled water included. This is an official warning that you'll receive a warning if you continue to push this idea. Gatorade is naturally gluten-free as well, and it's purified water does not include gluten. You can see all sort of junk on the Internet--that does not mean it is true.
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