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

Am I going crazy after Celiac disease confirmed?


Kathouse

Recommended Posts

Kathouse Rookie

Hi all

I am Kathy, 47 in Michigan. Celiac disease is confirmed within the last 2 months both via the bloodwork and endoscopy/colonoscopy. After the Endoscopy, I had severe stomach pains so the GI doc ordered a capsule endoscopy which I had Friday 3/31/17. The prep/cleanse is similar to that of the colonoscopy but less intense. Anyway, each time, a day or two after the prep I went into severe anxiety and depression. I have this anyway but it's way worse. I went to ER the other day to rule out anything physiological and they couldn''t find anything from bloodwork, ekg, etc. so they sent me to a psychiatric network. From there I will be going through intensive crisis outpatient counseling. I don't feel well. I feel uneasy, anxious, tired, sad with dark negative thoughts. WTF??????  I have been gluten free for about 6 weeks. This morning I had an "episode".  Woke up normal, drank 2 cups coffee. Ate a few hours later; gluten-free oatmeal with brown sugar, almond milk, gluten-free bread with peanut butter. Within an hour later I began heart palps, thumping heart, and had diarrhea. Of course my anxiety kicked in too. I had to take a Clonopin to calm down. Please write if anyone has a similar experience. TYIA


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Welcome to the forum Kathouse! :)

I gotta tell you that 6 weeks is early on in the recovery from celiac disease damage to our guts.  It can take quite a few months or years to get back to normalcy.  But that doesn't mean you won't have improvements along the way.

You may have a problem with oats.  Some 10% or so of celiacs react to oats like they do wheat, rye and barley.  So it's good to skip all oats for 6 months or so and then try  them.

Our guts make more serotonin than our brains.  So the gut can potentially have some rather unexpected affects on mood.  Plus there are lots of nerves in the gut as it is a complex organ.

The best way to start the gluten-free diet is to skip 95% of the processed foods and eat whole meats, veggies, nuts, eggs.  No dairy no carbs, no sugary foods.  Also it can help to take some probiotics.  Sometimes digestive enzymes can be helpful.

A good multivitamin may help also.

Kathouse Rookie

Thanks GFinDC!

I put a call in to the GI's nurse. She was ambilvalent about it. I felt like yelling, "Hey b****, I'm going outta my mind here, WTF?" I will try to skip oats for a while...but the sudden heart palps, pulse increase and diarrhea is strange and anxiety inducing. I HATE this right now. Good thing I'm on Spring Break and not working. 

 

So for now I am eating whole foods mostly, for example, making gluten-free crockpot chicken and dumplings. Also eating fruits and vegies, lots of 'em. And I have a good probiotic.

 

Thanks again

ravenwoodglass Mentor

If this happened both times a day or two after the prep and procedure I am wondering if you could have been reacting to something either in the prep or in a medication that you were given. Do mention this to your doctor if you should need another scope in the future.

You are very early into healing and the celiac lifestyle. Be sure to read the Newbie 101 thread at the top of the Coping section. Unfortunately there is a lot we have to be careful of to avoid cross contamination and there is a lot of info there to help you learn what you need to do to keep from being glutened.

Do drop the oats for now. Wait until you are well healed before you add them back.  It is a good idea to also drop dairy. When you add it back in start with hard cheeses like cheddar and yogurt.

It takes time to heal try to be patient with yourself. It's a big adjustment but it is so worth it to get your health back.

Washingtonmama Contributor

Your post really caught my attention. I have had anxiety all of my life. My earliest memories are of anxious (but normal to every average child) childhood events. I know anxiety. This is a life changing diagnosis, it's no surprise your anxiety would be off the charts! And you had a procedure done, with medications you aren't used to. All new and all anxiety provoking. You could also be reacting to the oats and/or the medications that were used during your endoscopy as a previous poster said. AND you are just starting to heal. AND you are still adjusting to the new way of life, learning how to eat gluten-free and learning about Celiac disease. That is stressful! I would be surprised if even an average person who didn't have previous anxiety wasn't really affected by all of this. I have read many times on this board that many people have new neurological symptoms show up that go away as they heal. I can't say for sure but I think since you have had issues with anxiety before, this is all caused by anxiety. It doesn't make it any less miserable, but it might be comforting to know you are ok (esp after the normal bloodwork that came back from the ER visit). I know a lot of people with anxiety and its very common to have our anxiety symptoms change as soon as we figure out what they are. Like maybe you would feel dizzy, and you figured out that only happens when you are feeling anxious. Then, of course, our brains are over-imaginative, so a new symptom appears. Now you have ringing in your ears. Anxiety says its a brain tumour! It's exhausting. Hopefully, this has helped. I am trying to put a positive spin on the Celiac diagnosis. I am now forced to eat healthier. My body will be healthier! I'm hoping my anxiety and Bipolar symptoms will be reduced, or maybe even GO AWAY! I know soon I will have more energy. The testing and shock of the diagnosis is over, time to get a move on and get this taken care of so I can start feeling better. HUGS to you.

Kathouse Rookie

Ravenwoodglass: The most recent intense anxiety/depression/can't get out of bed episode happened the day after the prep for the capsule endoscopy. I called the GI doc and he said it is common for mental health issues to be exacerbated by Celiac and to follow up with both my PCP and my Psychiatrist. He had not yet read the capsule study so I'm waiting to hear on that.

I am reacting to foods differently at times. I usually drink white wine with no problem. Last night I had a glass before dinner and got all flushed skin from neck to scalp, hot and itchy. Any other night no problems. Ugh!!  I am increasingly sensitive to salt too--just a dash too much and I'm up in the middle of the night.  Made gluten-free chicken & dumplings in the crockpot for dinner. The dumplings were gross--will need to modify that recipe from Pinterest!! 

Washingtonmama: Anxiety is a b****!!! I have been more sad and crying easily, focusing on negative things both past and present. I'm thinking, "Oh my God, get over it! Just snap out of it and stop this s*** now!" It doesn't work. It's beyond my control. All of this has been since I cut out Gluten. I will be patient and wait for my body to adjust. In the meantime I am forcing myself to get out and do things rather than hanging around the house and obsessing about Gluten stuff online.

Today I have an ultrasound to look for ovarian cysts and labs including hormonal and a1c requested by my obgyn. I may be all jacked up inside there too, or starting Menopause. (cries inside).

Thanks for all the replies and input so far. It helps.

Kat

Washingtonmama Contributor

Kathouse, some people need time to grieve. I think its great you are forcing yourself to go out. I never had any luck with that, so glad you can!

 


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



Celiac.com Sponsor (A8-M):



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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,408
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.