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Anxiety


kemper3

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kemper3 Newbie

I am new to this forum. I have been living gluten free for approx 5 months. I became a type 1 diabetic prior to being diagnosed as a celiac. Only after my sister had become diagnosed with celiac, I decided to be tested. All my prior doctors had just figured I had a "nervous stomach". I should eat better, exercise..... I had been living with symptoms of celiac for almost 15yrs before I finally was diagnosed. I do think I feel better although my symptoms have not gone away completely. I am still new at the diet and I sometimes miss gluten in the product's ingredient list. God Bless Redbridge Beer.

Previous to my diagnosis I developed some severe social anxiety issues due to my fear of not being able to find a bathroom. Now that I am off of glueten my anxiety has seemed to have gotten worse. Has anybody else had any anxiety related experiences. I am currently seeing both a psychologist and psychiatrist. I have been through Wellbutrin, Zoloft, Lexapro. I am now on some SNRI's trying to find something that will work for me.

Am I alone or do any others out there suffer from anxiety related issues they feel are directly attributed to Celiac?


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YoloGx Rookie

Welcome to the Forum!

All my anxiety left after I went off all trace gluten. This meant also avoiding cross contamination (CC) from a variety of sources as well as changing my soaps, detergents, shampoos, toothpaste etc. plus making sure I wasn't getting glutened from building materials (like Fixall, pre mixed plaster and the like). I also had to make a habit of always washing my hands before eating. And change lipstick (this for your wife or girlfriend) and lip gloss etc. It also meant throwing out my old wooden utensils and chopping boards and buying a new fry pan etc.

Eventually I have also had to go off all grains since I one of those really sensitive people with celiac and thus have gone a specific carbohydrate diet (scd) in addition to being off all gluten. But that's another story. The anxiety left long before I did that...

Bea

darlindeb25 Collaborator

I'm not sure about others, I know I always had to know where the bathroom was in any given scenerio. If I didn't know where there was a bathroom, or was in a place with no restrooms facilities, then my anticipatory anxiety kicked in. Gluten messes with our heads, just as much as with our tummies. It's an equal opportunity poison! ;)

Before I was gluten free, it was worse, yet, even after, the memory of the years before always made me search for the bathroom, just in case. We still worry at any time, we could still NEED the bathroom. I have been gltuen free for 9 years, and I still have this anxiety sometimes. It comes from years of having to deal with these situations.

I was on Xanax first, then Paxil for years. Paxil I was able to wean off within my first year of being gluten free. Three years ago, I was put on Celexa, just to even out my anxiety, which I felt didn't do anything, and now, I am on Wellbutrin, my neuro feels I have too much anxiety, causing tense muscles in my neck and shoulders, in turn causing my constant headaches.

You will slowly get better. There will be more good days than bad. I had to learn to try and talk myself out of the anxiety. I also have a wonderful sweetheart who can talk me out of panic/anxiety. For some of us, it becomes a part of our personality. We have anxiety, maybe not because of our tummies anymore, yet, that is the first thing we worry about, out of habit.

Korwyn Explorer
I am new to this forum. I have been living gluten free for approx 5 months. I became a type 1 diabetic prior to being diagnosed as a celiac. Only after my sister had become diagnosed with celiac, I decided to be tested. All my prior doctors had just figured I had a "nervous stomach". I should eat better, exercise..... I had been living with symptoms of celiac for almost 15yrs before I finally was diagnosed. I do think I feel better although my symptoms have not gone away completely. I am still new at the diet and I sometimes miss gluten in the product's ingredient list. God Bless Redbridge Beer.

Previous to my diagnosis I developed some severe social anxiety issues due to my fear of not being able to find a bathroom. Now that I am off of glueten my anxiety has seemed to have gotten worse. Has anybody else had any anxiety related experiences. I am currently seeing both a psychologist and psychiatrist. I have been through Wellbutrin, Zoloft, Lexapro. I am now on some SNRI's trying to find something that will work for me.

Am I alone or do any others out there suffer from anxiety related issues they feel are directly attributed to Celiac?

It wasn't until I removed both soy and dairy from my diet that my anxiety and panic attacks began to subside. I too got worse with these after going gluten-free, and it was because the proportion of soy suddenly quintupled as I replaced dairy with soy milk, and soy flour in my baking. For me the soy will trigger extreme anxiety and panic, myoclonus, and hot flashes within 3-4 hours of ingesting it. There is some research linking dairy with psychological issues, but I haven't been able to find anything specifically about soy. However I know two other people personally (in RL) who have similar reactions. One is gluten-intolerant, no celiac disease diagnosis but carries the DQ3, and the other is DQ2,DQ3 and has celiac disease diagnosis via biopsy. Curiously I'm DQ8/DQ3. I'd be interested to see a study to see if there was a correlation there.

Korwyn Explorer

On a followup note, I have been taken off all my anti-stress, anxiety meds as well. !!! :) No more lexapro or wellbutrin. Which is good because I hate taking meds. And, I forgot to mention that I consider myself to be a 'super-sensitive' due to some issues with CC in products that were produced in a 'facility which also processes products containing wheat,' as well as a number of other incidents which cause me to prefer to go hungry rather than risk getting either gluten or soy in any amount. My last episode took me two weeks to recover from.

kemper3 Newbie

That is reassuring. My shrink and I are experiementing with different drugs to level me out. So far we have had nothing but strikes. I am sure we will find something that will work.

I'm not sure about others, I know I always had to know where the bathroom was in any given scenerio. If I didn't know where there was a bathroom, or was in a place with no restrooms facilities, then my anticipatory anxiety kicked in. Gluten messes with our heads, just as much as with our tummies. It's an equal opportunity poison! ;)

Before I was gluten free, it was worse, yet, even after, the memory of the years before always made me search for the bathroom, just in case. We still worry at any time, we could still NEED the bathroom. I have been gltuen free for 9 years, and I still have this anxiety sometimes. It comes from years of having to deal with these situations.

I was on Xanax first, then Paxil for years. Paxil I was able to wean off within my first year of being gluten free. Three years ago, I was put on Celexa, just to even out my anxiety, which I felt didn't do anything, and now, I am on Wellbutrin, my neuro feels I have too much anxiety, causing tense muscles in my neck and shoulders, in turn causing my constant headaches.

You will slowly get better. There will be more good days than bad. I had to learn to try and talk myself out of the anxiety. I also have a wonderful sweetheart who can talk me out of panic/anxiety. For some of us, it becomes a part of our personality. We have anxiety, maybe not because of our tummies anymore, yet, that is the first thing we worry about, out of habit.

utdan Apprentice
I am new to this forum. I have been living gluten free for approx 5 months. I became a type 1 diabetic prior to being diagnosed as a celiac. Only after my sister had become diagnosed with celiac, I decided to be tested. All my prior doctors had just figured I had a "nervous stomach". I should eat better, exercise..... I had been living with symptoms of celiac for almost 15yrs before I finally was diagnosed. I do think I feel better although my symptoms have not gone away completely. I am still new at the diet and I sometimes miss gluten in the product's ingredient list. God Bless Redbridge Beer.

Previous to my diagnosis I developed some severe social anxiety issues due to my fear of not being able to find a bathroom. Now that I am off of glueten my anxiety has seemed to have gotten worse. Has anybody else had any anxiety related experiences. I am currently seeing both a psychologist and psychiatrist. I have been through Wellbutrin, Zoloft, Lexapro. I am now on some SNRI's trying to find something that will work for me.

Am I alone or do any others out there suffer from anxiety related issues they feel are directly attributed to Celiac?

I can say that I am one that suffers with severe anxiety issues which definitely get a lot worse with any gluten contamination in my food. It doesn't occur only with gluten but with generally all allergic reactions or getting the flu or with any type of immune-system-connected issue that I experience.

I've tried everything under the sun including 8 different medications by psychiatrists and nothing has helped except in eating healthy and in going to bed early and getting up early. I'm not sure exactly what type of social anxiety you have but mine is the basic social anxiety disorder that is not readily dectectable to any except to those whom I tell.


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climbmtwhitney Apprentice

Kemper3,

Have you ever checked your adrenals? Adrenal fatigue or the more extreme adrenal exhaustion have a link to Celiac. I, myself, suffered from complete adrenal exhaustion a couple of years before diagnosis. During that time of napping 3 hours a day :o my anxiety was through the roof. It was only after my adrenals were balanced with cortisol and supplements that my anxiety disappeared. Just a thought.

Wish you the best and hope you figure out something that helps soon!

Jillian

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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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