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Lots of Symptoms and could it be Celiac or Gluten Intolerance?

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Hello everyone, thank you for accepting me!

I am 28 year old woman from Turkey. I have been having lots of symptoms since 2010. I feel like my body is fallen into thousand pieces. In 2010 I got diagnosed GAD with severe insomnia. I had to took SSRIs for years. Later on I started to get intermittent bladder issues like feeling the need of going to loo all the time. Then I developed tinnitus which is I assume from benzo withdrawal. Then I got dx with IBS(constipation) out of blue. Two years ago I got a burning feeling on the left top of my scalp then on my tongue and they eventually went away. I also have facial and body twitching(especially my fingers and my left side eyelid), chonic GERD issues, adult acne(not so bad), brain fog, sciatica pain, etc. Ten days ago I started to have a burning sensation in my toe on the left foot and it has spread to my left arm till my ear and left side of my back. I also have tons of twitching in the affected feet and numbness in my fingers which comes and goes. I did a bit of experiment on my own and went for gluten free for a day and the burning subsided a bit. I don't know if it is placebo related. I have started to think that I might have celiac disease but doctors here won't care about it actually. 

So, I want to start a strict gluten-free diet but I don't know where to start. I don't even know if all this is related to celiac but doctors couldn't find any reasons. Some says one should avoid consuming grains too. I do not have vitamin B12 deficiency(It is 250) but my vitamin d levels are very low. I don't know if the diet will be good for me. I need your help 😔

Thank you 🌸

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Celiac.com Sponsor (A8):

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Welcome to the board. If at all possible do try and get at least a celiac blood screening done. The reason I say this is because if you do go gluten free and it helps then you decide to test you will need to do a gluten challenge. A challenge after being gluten free for a time can make symptoms even more severe than they were before.

As to your B12 levels they are at the very bottom of the scale. It may be helpful to take a form of B12 that dissoves under the tongue. You want the sublingual because if you do have active celiac your body is not able to absorb it from a swallowed vitamin tablet. Don't be alarmed by the high dosage as your body will excrete any it doesn't need.

To learn what you need to do to correctly start a gluten free diet go to the top of the Coping section and read through the 'Newbie 101' thread. It has a lot of good info. Do feel free to ask any other questions you need.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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1 hour ago, ravenwoodglass said:

Welcome to the board. If at all possible do try and get at least a celiac blood screening done. The reason I say this is because if you do go gluten free and it helps then you decide to test you will need to do a gluten challenge. A challenge after being gluten free for a time can make symptoms even more severe than they were before.

As to your B12 levels they are at the very bottom of the scale. It may be helpful to take a form of B12 that dissoves under the tongue. You want the sublingual because if you do have active celiac your body is not able to absorb it from a swallowed vitamin tablet. Don't be alarmed by the high dosage as your body will excrete any it doesn't need.

To learn what you need to do to correctly start a gluten free diet go to the top of the Coping section and read through the 'Newbie 101' thread. It has a lot of good info. Do feel free to ask any other questions you need.

Thank you so much for your answer. I feel like I have a lot to learn from you guys.

Right I am coming back from my doc'd office. My MRs for disc and sciatica all came back negative. I once again told him about my feet symptoms and he thought it is all due to neurogical and I should seek help from a neurologist. But I am pretty sure I am completely fine. I got a brain scan last year and it was fine. He gave me b12 shots for a year and d vitamin in liquid form for 3 months. I yet again couldn't ask him about celiac because I am sick and tired of doctors laughing at my face when I suspect of anything. I made gluten-free grocery shop and on my way to home. I hope for writing my success story six months later!

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Beste28,

You may be low in thiamine, vitamin B 1.  The anxiety, insomnia, bladder weakness, constipation, Gerd, acne, tinnitus, tingling, twitching, ascending burning feeling, and all the rest can be attributed to deficiencies in thiamine and the other B vitamins and minerals thiamine works with.  I had many of the same symptoms.  

SSRIs and many other medicines can cause low thiamine or thiamine deficiency.  

Thiamine is needed to turn carbohydrates into energy.  Without enough thiamine and energy, the nerves in your body don't work right, so the feelings of pain can move around and there can be seemingly unrelated symptoms.  

You may have felt better not eating gluten because your body didn't use as much thiamine that you had available.  

The Erythrocyte transketolase test can identify thiamine deficiency.  Ask your doctor for this test.

Thiamine needs other vitamins, like niacin and pyridoxine, magnesium and vitamin C to work properly.  You should be tested for other vitamin and mineral deficiencies as well.  

Celiac Disease causes malabsorption of vitamins and minerals, but other things, like SSRIs can cause low thiamine, too.  

Here's an article you might find helpful. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

Please keep us posted on your progress!

Hope this helps!

Knitty Kitty

 

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