Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


Beste28

Recommended Posts

Beste28 Newbie

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 🌸


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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.

Beste28 Newbie
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!

knitty kitty Grand Master

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

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,996
    • Most Online (within 30 mins)
      7,748

    Naner4
    Newest Member
    Naner4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.