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Reaction = Breathing/anxiety Issues


anti-soprano

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anti-soprano Apprentice

Hello All-

I am a newly diagnosed Celiac who has been gluten-free for about a month. I had my first (and surely not my last) glutening a few days ago. Reading several posts, it seems as though most people experience GI symptoms; stomach pain, D, bloating, etc. I was wondering if there was anyone else out there that had a similar reaction to mine, which is difficulty breathing and an overall feeling of anxiety and just-plain-wrongness, as well as tightness in the back of my throat. My abdomen is bloated, but that's the only real GI symptom and I also wonder if it contributes to me not being able to get a full breath. The symptoms (minus the breathing thing) remind me very much of when I would have bad reactions to allergy shots as a kid- not anaphylaxis, but major swelling of my arm. Although I fully understand that everyone's reaction is personal, I'm beginning to wonder if my reaction is normal or not in the grand scheme of things.


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LauraB0927 Apprentice

Welcome to the forum! Although I dont get anxious after a glutening, I definitely experience mood symptoms and I'm not my usual happy self. I become angry, snippy, and short with people and my fiance can tell by the look on my face that I've been glutened. Like you said, things feel "off" or "wrong" and I have an overwhelming feeling of dread and want to isolate myself until its all over. If you read more posts, you'll see that a lot of other people on here definitely experience anxiety after being glutened. Just know and remember that it will pass and you'll come out of it. Sure, it feels terrible at the time but the good thing is that with us, its not a permanent thing. Best wishes!!

Keshavdas Apprentice

I experienced this a lot when I first went gluten free. I've seen some scholarly articles about how in essence gluten molecules attach themselves to endorphins and lessen their effect on mood. It's kind of like kicking dope for a while. I had terrible depression as well. It takes time but it does get better the longer you stay off gluten. I'm not completely free of it after more than two months but I get more and more "normal" days; also more and more days with good energy. Hang in there. Someone here suggested Iron and I did find by doing a smoothie in the morning with a couple of fistfuls of frozen spinach in the mix really helped to stabilize my mood. Turns out many folks with celiac have bad iron deficiency. None of this gets better overnight - takes a bit of time and patience.

Bubba's Mom Enthusiast

Iron is the first thing that comes to my mind. A glutening can knock down the tips of the villi enough that you aren't absorbing iron and other nutrients as well as usual? It happens to me.

When my anemia is bad it's like I can't take in a good deep breath and the anxiety is so bad I can't sleep.

Have you had your iron levels tested? If they were low, you may need to increase your iron intake for a bit?

Persei V. Enthusiast

Oh, I think I know how you feel. Especially the tightness in the back of the throat. Sucks :(

But I always thought it was because I spent 9 years of life sick all the time so I basically hate feeling anything "funny" on my stomach. I also panic a bit. I didn't think it anemia related... Funny, my iron levels were cool the last time I was checked, but then again, when it happened I've been sucessfully gluten-free for some time.

So spinach it is.

kwylee Apprentice

I went through a frightening period a number of months ago, this after being strictly gluten/dairy/soy free for 2 years. I was doing fine and one day I started getting the feeling that I couldn't take in a deep enough breath. I underwent many, many tests (most of which happened during the very time I was having the symptom) to make sure there wasn't an underlying cause but all they proved was that I was healthy as a horse. That's not bad news, but I still was having the breathing symptom. Not all day, just in the first part of the day; thinking back, that should have been a clue. One day I ran out of the gluten-free/DF/SF, no nitrate bacon I had been eating for awhile. The symptom subsided. After a week I ate it again and started with the breathing problem again.

You are totally correct, that everyone is different. But for me, the feeling like I couldn't suck in enough air was a simple food intolerance. I removed that item from my diet and the symptom has stayed away since. I usually suspect cross-contamination when I react but my typical immediate symptom is dizziness and that's not what was happening. I haven't tried another bacon brand since, but my best takeaway from that experience is that just because it is gluten-free/DF/SF, it doesn't mean your particular body chemistry will tolerate it without problems. And a food intolerance can absolutely cause that breathing symptom for some.

kittty Contributor

Anxiety can cause what feels like shallow or restricted breathing and a tight feeling in the throat, so it could all be part of the anxiety kicking in. It's especially bad during an anxiety attack. Anxiety is my worst symptom, and disrupts my life more than anything else. After a recent glutening I had to get a prescription for Xanax, which I hadn't taken in well over a year. Pretty sure the anxiety gets worse, or at least feels worse, after the body is no longer used to be poisoned regularly with gluten.


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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