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

New Symptoms - Need Help Analyzing


Gentleheart

Recommended Posts

Gentleheart Enthusiast

I was thoroughly enterolab diagnosed about 9 months ago. Symptoms mostly neurological; anxiety, heart palpitations, dizziness and ataxia. Only gastro symptoms were chronic constipation and bloating.

After gluten, dairy, egg and soy free for awhile, experienced unusual gastro symptoms. Got constant D on top of everything else, which was new for me and lasted many months. I was told that it was because my body was trying to adjust to life without those foods after a lifetime with them. Made sense. D finally went away.

But my anxiety, heart palps, dizziness and ataxia have not gone away yet. And in the last couple weeks I have added more symptoms that I'm very unacquainted with. I am burping frequently (seems to be just air), I sometimes have difficulty swallowing (seems to be anxiety) but the main thing is that immediately after swallowing, my food is coming back up at the base of my throat, just a little. I don't even get any burning or the horrible taste. It's like it is just sitting there for awhile. Is that what GERD feels like or how it begins?

It's a funny thing. I have more symptoms since I went gluten free than I did before. Anybody have any theories on that?

I'm hanging in there hoping that I feel better soon and all of this is just a beat up body adjusting to a very new dietary lifestyle. But these most recent symptoms are brand new and really confusing me. I would have thought my digestion would be improving, not getting worse.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

I am sorry you are feeling worse again. Unfortunately, it sounds like you may be dealing with intolerances other than the identified ones.

Legumes (especially peanuts) make me burp like that, and rice (another grain) will give me almost identical symptoms to gluten. Check out the link in my signature on lectins, and see if they may all be a problem.

Heart palpitations, anxiety and dizziness could also be symptoms of adrenal fatigue, a thyroid problem or both.

Since taking desiccated adrenal my heart palpitations have finally gone away.

Gentleheart Enthusiast

May I ask which dessicated adrenal you use? The one I tried to use seemed to make my palps worse. I assume they contained something I can't have. Thanks.

Ursa Major Collaborator
May I ask which dessicated adrenal you use? The one I tried to use seemed to make my palps worse. I assume they contained something I can't have. Thanks.

I am taking 3 a day of AOR classic series ADRENAL, lyophilized active glandular 250 mg. They guarantee that it doesn't contain wheat, gluten, corn, nuts, dairy, soy, eggs, fish or shellfish.

Gentleheart Enthusiast

Thanks so much! I will look it up on the web. If I could just get those abominable heart palps to stop, I'd be a happy camper and endure all the rest!

jayhawkmom Enthusiast
but the main thing is that immediately after swallowing, my food is coming back up at the base of my throat, just a little. I don't even get any burning or the horrible taste. It's like it is just sitting there for awhile. Is that what GERD feels like or how it begins?

Yep, that's what GERD feels like. It's unpleasant as heck. I have "silent reflux" in that I don't get heartburn or the burning throat associated with it. I simply feel like food gets stuck, constantly.

I've had an endoscopy - and the GERD has caused erosion in my esophagus. I didn't even know that I *had* it. I've been taking Prevacid to help heal the erosions. More recently than my endoscopy was a barrium swallow. They noticed no reflux at all after a few months on Prevacid. So, going gluten-free has helped that particular issue, for me, as well.

Nevadan Contributor

Gentleheart, have you had your thyroid function tested? Your symptoms of heart palpitations, anxiety, etc could be due to an overactive thyroid (hyperthyroidism). If your thyroid has been tested, or if you have it tested, be sure that the "Free T3 and Free T4" levels are measured and not just the usual TSH level.

Of course there are lots of other possible causes of your symptoms; this is just one possibility.


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



Celiac.com Sponsor (A8-M):



Gentleheart Enthusiast
Yep, that's what GERD feels like. It's unpleasant as heck. I have "silent reflux" in that I don't get heartburn or the burning throat associated with it. I simply feel like food gets stuck, constantly.

I've had an endoscopy - and the GERD has caused erosion in my esophagus. I didn't even know that I *had* it. I've been taking Prevacid to help heal the erosions. More recently than my endoscopy was a barrium swallow. They noticed no reflux at all after a few months on Prevacid. So, going gluten-free has helped that particular issue, for me, as well.

I really don't want to take drugs if I can avoid it and I sure was hoping to not have to endure an endoscopy for any reason either. I wonder if just remaining gluten free long enough will allow natural healing without all those invasive procedures. I'll certainly do what's necessary. But it just seems funny that the reflux has only emerged AFTER going gluten free for many months. Hope it isn't getting worse for some reason. Silent Reflux. I'll have to investigate that possibility. Thanks.

Has anyone ever tried digestive aid supplements for reflux? Did they work?

Gentleheart Enthusiast
Gentleheart, have you had your thyroid function tested? Your symptoms of heart palpitations, anxiety, etc could be due to an overactive thyroid (hyperthyroidism). If your thyroid has been tested, or if you have it tested, be sure that the "Free T3 and Free T4" levels are measured and not just the usual TSH level.

Of course there are lots of other possible causes of your symptoms; this is just one possibility.

Yes. I have been thoroughly tested for thyroid issues many times. Nothing ever showed even slightly abnormal. Thanks for the suggestion, though.

Nancym Enthusiast

Trouble swallowing is also a thyroid symptoms but it is also a symptom of EE as well: Open Original Shared Link

chrissy Collaborator

gentleheart---and endoscopy is nothing that you have to "endure"----i just had one recently and didn't remember a thing once they put me out. it doesn't leave any side effects, except maybe a slightly sore throat. i was out driving early in the afternoon after my procedure. i have reflux, two of my celiac girls have reflux, and my 3 year old had reflux so bad that she required surgery before she was 10 months old. untreated reflux can lead to esophageal cancer, so it is nothing to mess around with. i have trouble swallowing food and have had trouble in the past with it getting stuck and totally blocking off my esophagus----really painful. i am considering surgry myself because i don't want to take expensive meds for the rest of my life. don't know that this is helpful to you, but it's just a little more info for you to consider.

  • 1 year later...
mhb Apprentice
I really don't want to take drugs if I can avoid it and I sure was hoping to not have to endure an endoscopy for any reason either. I wonder if just remaining gluten free long enough will allow natural healing without all those invasive procedures. I'll certainly do what's necessary. But it just seems funny that the reflux has only emerged AFTER going gluten free for many months. Hope it isn't getting worse for some reason. Silent Reflux. I'll have to investigate that possibility. Thanks.

Gentleheart, How are you doing with this? I went GFDF in early June 08, and over the last month or so (Nov) I'm getting your exact problem. Like you, never had it before. Bummer. Has yours resolved? I have not had an endoscopy. Now there's research saying caffeine and chocolate are not the problem. Don't know what to believe and what to eliminate. I'm off gluten, dairy, soy, corn, beans, eggplant and potatoes. 2x tea a day, one piece dark chocolate some afternoons. Eggs and tomatoes don't seem to bother me that I'm aware of. How long after eating a GERD food does the symptom last if no other triggers come to play?

AliB Enthusiast

I see this all the time. Those who get better then get worse and start to develop weird reactions and intolerances to foods that were fine before, especially carbs.

Carbs are the biggest factor. Many of us with gut damage cannot digest them properly and undigested carbs are bacteria heaven! Hence the gas and bloating - they are kicking up a shindig in there! If you get gas, you know you have eaten something that is feeding the little beggars! Its all down to fermentation - what causes fermentation? Bacteria - yeast-based Candida being one of the biggest culprits.

The gas and bloating causes the top of the stomach to force up through the diaphragm creating a hernia. Food can't get down properly and gas can't get up. Often it creates a pocket at the top that traps the gas and creates a lot of pain. Mine used to cause pain right up into my throat. gluten-free settled it down initially but I quickly realised that it was down to more than just gluten and I was going backwards again.

Because gluten-free foods are much higher in carbs than gluten foods, we can end up eventually being worse off when we replace gluten with gluten-free. The beasties will end up travelling around the body in search of food, causing mayhem on the way in the form of other seemingly unrelated health issues that we have not experienced before.

An initial recovery may well simply be due to that in withdrawing their food source, namely the gluten, they die back somewhat, but then we start to introduce all this yummy high carb gluten-free stuff and they just pick themselves up, regroup, adapt to the new food source and come back with a vengeance.

The only real way of getting the better of them is to a)remove all forms of long-chain carbs and sugar from the diet for some time and b)prevent them getting a hold again by rebuilding the gut flora with good probiotics.

Quite a few of us on here have joined the large throng of those who have gained huge benefit from the Specific Carbohydrate Diet (SCD) that cuts out the offending foods and encourages probio replenishment, and are gradually healing properly. There is an SCD thread on the 'Other Food Intolerances and Leaky Gut Syndrome' section if you would like to know more. 'Breaking the Vicious cycle' and 'Pecanbread' are two very informative sites, too.

ShayFL Enthusiast

I had good success when I had a bout of GERD with "CeaseFire" by Vitamin Research Labs.

Open Original Shared Link

At first the the taste was kind of strong to me. But I grew to like it even. But it really did get rid of the reflux for me.

Mtndog Collaborator
Yep, that's what GERD feels like. It's unpleasant as heck. I have "silent reflux" in that I don't get heartburn or the burning throat associated with it. I simply feel like food gets stuck, constantly.

I've had an endoscopy - and the GERD has caused erosion in my esophagus. I didn't even know that I *had* it. I've been taking Prevacid to help heal the erosions. More recently than my endoscopy was a barrium swallow. They noticed no reflux at all after a few months on Prevacid. So, going gluten-free has helped that particular issue, for me, as well.

I have GERD as well and am taking Prevacid. I feel like there's a chip stuck in my throat when I swallow. I've noticed it's worse with dry foods.

After my upper endoscopy last year, my GI told me I had a narrow esophagus and it could cause that sensation from time to time. It can also be related to nerve pain.

You should definitely get it checked out- especially since it's a new symptom for you.

spunky Contributor

I haven't had the chance to read all of the replies, but would just like to add my experience in case it's helpful at all...

I went gluten free in Feb of 06... by the summer of 06, began having these symptoms... felt like the sphincter of my esophagus was messed up or something... like felt like it wouldn't open up to let swallowed food in, and wouldn't open right to allow burping, which was beginning to increase in me also at that time, but seemed the sphincter would open up too much later and allow stomach acids to flush up, etc.

I have a habit of keeping symptoms to myself when they confuse or scare me, which I think is why I let celiac symptoms go on for years before I fianlly addressed them... so with this symptom, I shoved it under the rug and struggled through it... but it seemed to be some temporary thing that happened quite a bit during the first months gluten free, and has come and gone to a much lesser extent for maybe a couple of weeks at a time since then. Now I'm getting close to 3 years gluten free, and have not experienced this for quite a while...

Since I don't do doctors, I don't know what it was or what caused it... just know it was something that happened to me after my first few months gluten free, and now seems to have stopped happening... so... it's possible it's some weird adjustment or reactiveness to foods that happens during healing ... also, I should add that during that time I discovered I had to stop eating soy, eggs, and a few others things that seemed to have begun bothering me out of the blue... now I've added back the eggs... I am doing better with small amounts of soy infrequently.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748

    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.