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

Celiac and anxiety


EmilyZ
Go to solution Solved by trents,

Recommended Posts

EmilyZ Newbie

I am really struggling with a recent diagnosis of Celiac Disease.  I spent most of my life (37 years) being told my symptoms were just stress and IBS related.  Realizing how my issues effect my ability to be there for my kids made me upset and I finally insisted on a referral to a GI doctor and was diagnosed with Celiac Disease.  I have been gluten free for about a month and a half now and I feel more miserable than before.  I think the need to be so hyper vigilant to everything is sending my anxiety into a tailspin which amplifies my tummy symptoms and leaves me a basket case.  I just don't feel well ever and I feel so scared.  I think it would help to know if this was a normal thing for other people too.  I am planning on checking for other food intolerances soon to hopefully eliminate/reduce other things that could be aggravating my system.  Any thoughts?  Does this get better?  

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Solution
trents Grand Master
Posted (edited)

Welcome to the forum, @EmilyZ! Yes, it does get better. In time you will develop a sixth sense of what you should avoid and you won't have to think so much about it. 

Are you getting good support and understanding from family and friends or a lot of opposition?

Also, after many years of being misdiagnosed you are probably suffering from nutritional deficiencies. For celiacs, gluten consumption causes inflammation that damages the villous lining of the small bowel where all of our nutrition is absorbed. It takes time to rebuild that after going gluten free - typically two year or more. Until then, absorption of vitamins and minerals is compromised. This can be offset by taking some high potency vitamins and minerals, making sure they are all gluten free products. We commonly recommend this to newly diagnosed members of the forum. You should look at an adult multivitamin, a high potency B coplex, D3, magnesium glycinate and zinc. Vitamin and mineral deficiencies can certainly have a negative impact on mental health and contribute to anxiety.

Costco is a good place to shop for supplements. Their Kirkland Signature and Nature Made product lines are generally gluten free and if so, will state such in the label.

Edited by trents
Link to comment
Share on other sites
Scott Adams Grand Master

It does get better, and I'm sorry to hear that you're so stressed out. It's hard to see the bright side sometimes, but in your case you've finally figured out the source of many years of misery. I went through a similar ordeal and it took me years of going to doctors before I finally figured it out. 

You main focus now should be staying 100% gluten-free. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

Link to comment
Share on other sites
Awol cast iron stomach Experienced
On 4/26/2024 at 3:39 PM, EmilyZ said:

I am really struggling with a recent diagnosis of Celiac Disease.  I spent most of my life (37 years) being told my symptoms were just stress and IBS related.  Realizing how my issues effect my ability to be there for my kids made me upset and I finally insisted on a referral to a GI doctor and was diagnosed with Celiac Disease.  I have been gluten free for about a month and a half now and I feel more miserable than before.  I think the need to be so hyper vigilant to everything is sending my anxiety into a tailspin which amplifies my tummy symptoms and leaves me a basket case.  I just don't feel well ever and I feel so scared.  I think it would help to know if this was a normal thing for other people too.  I am planning on checking for other food intolerances soon to hopefully eliminate/reduce other things that could be aggravating my system.  Any thoughts?  Does this get better?  

Oh Ms. Emily this quote is straight from my history too.

"...being told my symptoms were just stress and IBS related.."

It does get better both Scott and Trent have given excellent advice. I had 13 intolerances after diagnosis . I now have it down to gluten, and corn. I only recently got milk back. I still use nut milk, but do enjoy cheese or ice cream as milk. I still predominantly use nut and coconut milks. 

It will get better. There is the stress of learning while also embracing the lifestyle and  navigating  society  in your new "role".

Much of society/social can be based around food. Even if someone enjoyed cooking and baking , you must now work with new flours that have different properties, chemistry, and taste. All while parenting, and realizing you may have given this potential health burden to your children. It can be overwhelming indeed.

Be gentle with yourself. Give yourself grace with the errors or mistakes you may make. Also on a side note I found acupuncture a tool that helped me on my journey to recovery post diagnosis if you are open to alternative health paths.  

Best wishes. 

Link to comment
Share on other sites
Suzi374 Rookie

Hi Emily. I have had a history of weird stomach issues but not typical celiac symptoms I don’t think. Constipation, reflux, heartburn, feeling like I can’t get enough air when eating some foods, panic attacks, anaemia (veg though) and I’ve had so many tests that have shown nothing. So needdd neurologist for numbness and tingling in feet and he asked if celiac. He ordered a lot of blood tests that hopefully I’ll get back Tuesday. I kind of thought let’s just go off gluten, because I started to link all the weird symptoms up that I’ve been having for around nearly 4 years. Now 8 days off gluten and have had two nasty panic attacks, one making me call an ambulance (humiliating) as I felt like I was going to die. I felt like something was wrong, then can’t get my breath, then my heart takes off. I’m hoping this is withdrawal or something that will start to improve. I do get those attacks but now I’ve had two full on ones and many smaller ones this last week. On the positive, no longer constipated!!! Yay. Can bend down - knees didn’t seem to want to bend which started a couple of years ago, I’m not napping during the day which is strange as I get exhausted. I have more energy and when I’m not having a panic attack, I feel clear in my head. No more buzzing. I have heard there’s some detox effects. I’m hoping that’s true and not just weirdos saying that there’s detox effects lol. Is anything better for you at all?  I did read that for some people it can be quite nasty to detox, due to something the gliadin does. Again I’m wary but I think they mentioned gliamorphine. Just maybe Google that. Your not alone though ❤️. I’m hanging in there hoping that this is an answer to a fairly rough time. 

Link to comment
Share on other sites
Suzi374 Rookie

Emily I also have a friend who is celiac along with two sisters. One of those sisters was almost crazy until she was supplemented with B12. Now she’s so much better. I was also just reading a scientific report that stated that blind studies showed marked improvement in some pts with psychiatric illnesses. So not just someone saying something random, but actual peer reviewed studies. 

Link to comment
Share on other sites
  • 2 weeks later...
CindyLF Newbie

With a strict gluten free diet, you will eventually get better and the anxiety will definitely lessen. I was so sick, physically and mentally, that I could barely function. The worst part for me was the anxiety and depression.  I learned that gluten not only affects the digestive system, but causes inflammation throughout the body, including the brain. Continue the gluten free diet and as others have said, take supplements. Magnesium and potassium were helpful for me besides a multi vitamin. Stay the course and realize it will take time to heal.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jean Shifrin replied to Jean Shifrin's topic in Related Issues & Disorders
      16

      Severe joint swelling from Celiac

    2. - Beverage replied to Jean Shifrin's topic in Related Issues & Disorders
      16

      Severe joint swelling from Celiac

    3. - knitty kitty replied to jmiller93's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      What do my test results mean?

    4. - trents replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confused with test results

    5. - Dhruv replied to Dhruv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confused with test results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,745
    • Most Online (within 30 mins)
      7,748

    Nightowl2024
    Newest Member
    Nightowl2024
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jean Shifrin
      Thank you so much for this info. I won't know my levels of anything until my next appointment, but I am saving this info and will contact you if I'd like to get more detail. I'm so happy you found some real help!
    • Beverage
      I also did not have the so-called typical Celiac symptoms, my main complaint was always getting sick, asthma, loss of sense of smell, and kidneys were failing. My GFR was in 40's - 50's and docs saying "Kidneys don't get better, we can only slow the decline" also "We don't do anything for kidneys until you are ready for dialysis." I was blown away, so decided to go to a naturopath who diagnosed me with Celiacs rather quickly. After the Celiac diagnosis and lots of improvement overall on gluten-free diet, kidneys came back a little, but not great like I'd hoped.  I had improvement in asthma and other issues with benfotiamine (b1), metylcobalamin (b12), and flush niacin (b3), but kidney improvement remained elusive. Ok so I'll admit I became an internet doctor and searched and read everything to get kidney function up. I happened across someone on Twitter who touts natural immunity and supplements for healing. So I tried what she recommended for CKD:  Nettle seed extract, silymarin (milk thistle), and Cordyceps mushrooms. I started at the end of April of this year, and got my kidneys checked in mid-September. In 4 1/2 months, GFR went up to 70!  All other numbers looked fantastic. I can't say it will help you, but worth investigating. I believe dosage amounts are important, so let me know if you want more information.  
    • knitty kitty
      There's different reasons why one may be seronegative. Some Seronegative Celiacs may be genetically encoded to be IgA deficient.  But, they may still make IgG antibodies, hence both IgA and IgG antibodies are tested for in the full Celiac Panel of blood tests.  Instead of IgA and IgG antibodies, some Seronegative Celiacs may make other types of antibodies, like IgM antibodies, which aren't usually tested.  Some may make antibodies, not against Gliadin, but other immunogenic peptides in wheat, barley and rye.   The immune system can respond to gluten by sending in different types of protective immune cells, which don't result in IgA production, but result in changes in the types of immune cells in the intestinal tissues may be seen.  There's also the possibility that in some seronegative Celiacs the production of antibodies in the gastrointestinal tract is so poor and limited in number that sufficient antibodies don't get into the bloodstream where they can be measured.  Chronic Inflammation and Villous Atrophy may result in anemia and thiamine deficiency that can result in poor antibody production.  However, healing of the intestinal lining and villi may restore the ability to produce IgA and IgG antibodies.  They may test positive on serology at a future time. I believe I'm of the last group.  I know at one point my doctor said I had high antibody levels, but the doctor refused to do further testing for specific antibodies found in Celiac Disease.  He laughed at me for suggesting Celiac because I was not the "Classic Celiac", all skin and bones, wasting away from malnutrition.  I was obese, bloated, and prediabetic, all symptomatic of Thiamine deficiency (High Calorie Malnutrition), and also Celiac Disease.  By the time I found a new doctor who would test for Celiac antibodies, my health was so poor from nutritional deficiencies and intestinal damage, I wasn't producing antibodies.  I was seronegative.  I was dismissed as being a hypochondriac, a mental case.  They did not connect my mental health issues with nutritional deficiencies (Wernicke's Encephalopathy, Pellagra, B12 Deficiency Dementia, Scurvy).  Will I undergo a gluten challenge to test for tTg IgA antibodies?  Absolutely not.  I have two genes for Celiac Disease and improvement on a gluten free diet.  That's plenty enough for me.   Interesting Reading: Seronegative Celiac Disease and Immunoglobulin Deficiency: Where to Look in the Submerged Iceberg? https://pmc.ncbi.nlm.nih.gov/articles/PMC4586545/ Clinical profile of patients with seronegative celiac disease https://pmc.ncbi.nlm.nih.gov/articles/PMC10404820/
    • trents
      In the UK and some other nations there is an increasing tendency for doctors to forego the endoscopy/biopsy if the ttg(IGA) is 10x normal range or greater. Your son's score easily exceeds that. There is only a 5% chance that his elevated ttg(IGA) levels are caused by something other than celiac disease and not more than a 10% chance that his elevated ttg(igg) score is caused by something else. Please consider these odds.   Then there is the elevated liver enzyme issue which is found in about 20% of those with celiac disease.  I think there is sufficient evidence to conclude that your son has celiac disease and I would talk to his physician about opting out of the endoscopy/biopsy. On the other hand, if you or your son demand more evidence, then pursue the endoscopy/biopsy.
    • Dhruv
      Ok, so reference range for labcorp for (tTG) IgA Reference Interval: 0-3, Unit: U/mL( for my son it's  >100) Transglutaminase (tTG) IgG Reference Interval: 0-5, Unit: U/mL( for my son is 57)   Thank you, I will ask doctor to order the correct test. Since he is on gluten due to unawakened will investigate throughly. 
×
×
  • Create New...