Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

question? are my symptoms alike ?


Rebeccaj

Recommended Posts

Rebeccaj Rookie

I have been diagnosed from celiac disease 4 years ago . when around flour cooking its hard to breathe also having to overdose on fexofenadine and inhaler and coffee also body goes into shock with allergies to foreign bodies. my symptoms are swollen tongue , swollen oesophagus , difficulty breathing, and chest pain along with bloating , and shock, rumination ,anxiety and obsessive compulsive disorder along with panic and then gluten ataxia ,vertigo, dizzy ,pins and needles and loss of speech, unable hear completely deaf, and almost suffocation unless fexofenadine and inhaler , haven't been diagnosed with epi pen as I would of been on ground from when had flour so fexofenadine has saved me once again and orange juice and water and rest .

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Welcome to the forum,

Sounds like you may be having an allergic reaction to wheat.  Some people can have a wheat allergy as well as Celiac Disease, producing swollen tongue and esophagus, and difficulty breathing.  

After gluten exposure, I got gluten ataxia, panic disorder, vertigo, pins and needles (parathesia), loss of speech and hearing.  I found taking B Complex vitamins helped tremendously.

Before diagnosis, malabsorption due to intestinal damage and inflammation from celiac disease can cause deficiencies in the eight essential B vitamins, Vitamin D, and important minerals like magnesium and zinc.  Changing to a gluten free diet can also result in vitamin and mineral deficiencies because the gluten free diet can be low in vitamins and minerals, in addition to the ongoing malabsorption.  

I took vitamin and mineral supplements to boost my absorption of these essential nutrients.  

Vitamin D helped my vertigo, but extra Thiamine Vitamin B 1 really improved my vertigo, panic attacks, and corrected my hearing loss and speech.  Thiamine also improves asthma.  Other B vitamins, Cobalamine B12, Pyridoxine B 6, Folate B 9, helped with the pins and needles.  

The brain uses lots of Thiamine.  Hearing loss, vertigo, and speech problems are symptoms of a Thiamine deficiency disorder.  I took 500 - 1500 mg of Thiamine in the forms called Allithiamine (TTFD) and Benfotiamine.  These are safe, nontoxic forms of Thiamine that increase brain function (goodbye ataxia) and promote healing. 

Supplementing with vitamins and minerals is beneficial since nutritional deficiencies go hand in hand with celiac disease.  Discuss supplementation with your doctor and nutritionist.  

Hope this helps!

Link to comment
Share on other sites
plumbago Experienced

Check with your doctor - sounds like your allergies are life-threatening and you should be prescribed an epi pen. (I didn't understand the sentence you wrote with "epi" in it, fyi.)

Link to comment
Share on other sites
Rebeccaj Rookie
16 minutes ago, plumbago said:

Check with your doctor - sounds like your allergies are life-threatening and you should be prescribed an epi pen. (I didn't understand the sentence you wrote with "epi" in it, fyi.)

Thank you I have had allergies test on skin and come back fine that was the skin not Airbourne or actually near flour . But like epi pen isn't prescribed because it's a disease not allergy but wheat and flour and gluten is derived from one and Airbourne is a reaction so Airbourne avoid all together for 12 hours . Are you a celiac ?

Link to comment
Share on other sites
Rebeccaj Rookie
1 hour ago, knitty kitty said:

Welcome to the forum,

Sounds like you may be having an allergic reaction to wheat.  Some people can have a wheat allergy as well as Celiac Disease, producing swollen tongue and esophagus, and difficulty breathing.  

After gluten exposure, I got gluten ataxia, panic disorder, vertigo, pins and needles (parathesia), loss of speech and hearing.  I found taking B Complex vitamins helped tremendously.

Before diagnosis, malabsorption due to intestinal damage and inflammation from celiac disease can cause deficiencies in the eight essential B vitamins, Vitamin D, and important minerals like magnesium and zinc.  Changing to a gluten free diet can also result in vitamin and mineral deficiencies because the gluten free diet can be low in vitamins and minerals, in addition to the ongoing malabsorption.  

I took vitamin and mineral supplements to boost my absorption of these essential nutrients.  

Vitamin D helped my vertigo, but extra Thiamine Vitamin B 1 really improved my vertigo, panic attacks, and corrected my hearing loss and speech.  Thiamine also improves asthma.  Other B vitamins, Cobalamine B12, Pyridoxine B 6, Folate B 9, helped with the pins and needles.  

The brain uses lots of Thiamine.  Hearing loss, vertigo, and speech problems are symptoms of a Thiamine deficiency disorder.  I took 500 - 1500 mg of Thiamine in the forms called Allithiamine (TTFD) and Benfotiamine.  These are safe, nontoxic forms of Thiamine that increase brain function (goodbye ataxia) and promote healing. 

Supplementing with vitamins and minerals is beneficial since nutritional deficiencies go hand in hand with celiac disease.  Discuss supplementation with your doctor and nutritionist.  

Hope this helps!

Have you ever stopped breathing like what's the worst your attack has been also are you in environment with flour as we are to avoid all together.

Link to comment
Share on other sites
plumbago Experienced
1 hour ago, Rebeccaj said:

Are you a celiac ?

Yes.

Link to comment
Share on other sites
knitty kitty Grand Master
1 hour ago, Rebeccaj said:

Have you ever stopped breathing like what's the worst your attack has been also are you in environment with flour as we are to avoid all together.

No, I've never stopped breathing.  I don't have asthma.  I'm a lifelong Celiac.  My symptoms when exposed are throat tightening, difficulty breathing, feeling faint.  Feels like I'm drowning, can't get enough air even if forcefully inhaling.  It's scary, I agree.  

I can react to airborne gluten while walking past the bakery aisle at the grocery store or near restaurants. 

I also react to highly scented things like air freshener, scented candles, even someone wearing clothes with scented fabric softeners and perfumes.  These may not have gluten in them, but they do contain Sulfites, and I have Hypersensitivity Type Four to Sulfites.  So I also avoid the laundry detergent/cleaning products aisles.

Part of the immune response to allergens and gluten is the release of histamine.  In the lungs, histamine release contributes to asthma and accumulation of fluid in the lungs.  

Our body can make histamine (it's an important neurotransmitter that causes alertness).  We also ingest histamine in our food.  Some foods contain higher histamine levels (fermented, aged, and processed foods and alcohol). 

Following a low histamine diet for several weeks allowed my body time to clear excess histamine.  Vitamins like Cobalamine B12, Pyridoxine B 6, Folate B 9, Riboflavin B 2, and Thiamine B 1 are needed to get rid of histamine.  Supplementing with all eight essential B vitamins (in a B Complex plus extra Thiamine in the form Benfotiamine) is beneficial in healing the intestines and lowering histamine levels.

Thiamine is important in oxygenation of the blood.  Thiamine is needed for red blood cells to carry oxygen around the body.  When I was low in vitamins, I had more severe scary reactions where I couldn't breathe well.  My body's thiamine demands increased when I was exposed to airborne gluten and Sulfites.  Since increasing my intake of Thiamine as Benfotiamine and the B Complex vitamins, I don't react as severely, although I still avoid the bakery and cleaning products aisles. 

Thiamine is important to brain function.  Our brains can use as much Thiamine just thinking as our muscles use running a marathon.  Thiamine insufficiency can result in ataxia, anxiety and panic disorders.  Obsessive-compulsive disorder happens in Thiamine and Pyridoxine B 6 insufficiencies.  Dysphagia (difficulty swallowing) and voice problems (hoarseness and mutism), hearing problems and deafness can also occur in Thiamine insufficiency.  

@Beverage has asthma.  Perhaps she will join us.  Thiamine has helped her asthma.  

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master
8 hours ago, Rebeccaj said:

Thank you I have had allergies test on skin and come back fine that was the skin not Airbourne or actually near flour . But like epi pen isn't prescribed because it's a disease not allergy but wheat and flour and gluten is derived from one and Airbourne is a reaction so Airbourne avoid all together for 12 hours . Are you a celiac ?

You can have both celiac disease (autoimmune disease) and a severe wheat allergy at the same time, which might fit your description. I recommend that your doctor run some allergy tests on you so that you can get the allergies diagnosed, along with getting an epi pen prescription.

 

Link to comment
Share on other sites
Rebeccaj Rookie

Yes.

Link to comment
Share on other sites

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
      125,785
    • Most Online (within 30 mins)
      7,748

    bjboudreau
    Newest Member
    bjboudreau
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      68.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @sh00148 I am so glad that your son is going to have a blood test next week.    If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest.  However, one thing you may wish to change in the short term instead/as well is to stop him consuming dairy products.  If he is a coeliac, he may have become temporarily dairy intolerant.  The tips of the villi, which line the gut and are damaged in coeliacs, produce lactase, an enzyme essential for the digestion of dairy.  If they are damaged it can contribute to diarrhea and gas.  I had this some months after my own coeliac diagnosis, and it improved no end when I gave up dairy for a while.  Once on a gluten free diet they heal, and most coeliacs can return to consuming dairy. I would have thought that with those bowel issues in a young child what is happening to him is entirely normal.    
    • Scott Adams
      It’s understandable to feel frustrated, especially when you’re managing celiac well but still experiencing new, unexplained symptoms. Many people with celiac notice sensations around the neck and jaw area, even without visible swelling. Sometimes, lymph node sensitivity or a tight feeling in the throat can linger as part of the body’s inflammatory response, even if your thyroid and other tests come back normal. It sounds like you’ve been thorough with testing and have seen multiple specialists, which is great. A few things might be worth considering: for some people with celiac, there can be lingering sensitivities to trace gluten, cross-reactive foods, or even certain environmental factors that can cause persistent inflammation. Since you’ve tried antihistamines and a humidifier, you might want to discuss options like different allergy medications or seeing an ENT specialist if you haven’t already. Some find that supplements (like anti-inflammatory options or probiotics) help support overall inflammation reduction, though you should always check with your doctor first. It’s frustrating when you feel the symptoms without an obvious cause, but trust your instincts—hopefully, with persistence, you’ll find answers and some relief soon.
    • Scott Adams
      It sounds like you’re really going through it—accidental gluten exposure can definitely take a toll, and when it happens twice close together, it can feel like it drags on even longer. Many people find that each glutening is a bit unpredictable in terms of recovery, and it could take a little extra time if your body hasn’t fully cleared out the first exposure before the second one hit. Staying hydrated, avoiding other potential irritants (like alcohol and spicy foods), and resting can help ease the symptoms as your gut heals. Hopefully, things start to settle soon! In the meantime, it could be helpful to communicate with friends about specific brands to look out for, even when it’s hard to ask in the moment. Hang in there—hope you’re feeling much better soon! This article, and the comments below it, may be helpful:    
    • Scott Adams
      @Therockfrog, it sounds like you’ve been through so much, and managing these symptoms must be incredibly challenging. Tingling in your feet and scalp, especially after eating specific foods, can sometimes be related to histamine intolerance or even a sensitivity to certain food proteins, as you’ve suggested. Since you’ve already noticed patterns with gluten, nuts, and dairy, it might be worth looking into a histamine intolerance or mast cell activation syndrome (MCAS), where the body has an exaggerated response to histamine and other triggers, which can cause itching, tingling, and even high cortisol levels. This would explain why your symptoms change with seasonal pollen too. If you’re considering eating some of these trigger foods before seeing the allergist, it could help with identifying specific IgE reactions. However, since this can worsen symptoms, you might consider working with your doctor to approach this slowly, maybe introducing one trigger at a time. It’s great you’ve tracked your symptoms so closely—that detailed information will help the allergist a lot. In the meantime, perhaps continue with antihistamines, as sometimes trying different types (H1 and H2 blockers, for example) under guidance can make a difference. Hang in there! It sounds like you’re very close to finding the root of these reactions.
    • Scott Adams
      Please see this article:  
×
×
  • Create New...