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

Celiacs & Stress: Is Recovery Possible?

RGB

By RGB
in Coping with Celiac Disease

Recommended Posts

RGB Newbie
RGB
Posted

I was diagnosed with Celiacs about 2 years ago after suffering for a few years with severe stomach pain, nausea, vomiting, fatigue, muscle weakness, brain fog, dizziness, skin problems and a number of other symptoms. I have faithfully adhered to the gluten-free diet to the best of my knowledge and don't battle with the stomach pain and nausea 24/7 as I used to, but I do still constantly struggle with fatigue and muscle weakness to the point that I can barely walk and have to hold on to walls and walk extremely slow to get around. At times I'm even nervous to drive as a result.

This seems to be my normal for over a year or more. I'll have about 2-3 good days followed by 3-4 days of feeling extremely weak, and back around this cycle over and over. It gets worse when I work long hours and long work weeks.

I heard that stress is often a trigger for celiacs. What if one's job has a tendancy to be very stressful...how is one to recover and find a heathly balance with celiacs? I tend to still battle with extreme fatigue, muscle weakness, brain fog, and skin problems more days than not which is really affecting my productivity and overall outlook. I'm even worried about it affecting my current or future employment oppotunitites. The doctors' only solution to all this is to put me on an anti-depressant; however I disagree.

Does anyone else deal with stress still triggering celiac symptoms while on a gluten-free diet? Any advice on how to cope in a stressful environment and still regain full health and vitality without anti-depressants? Could I be making any common mistakes somewhere that could also be triggering these symptoms?

Help...I've pretty much given up on doctors at this point.

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Stress can present all kinds of issues...As I'm sure you already know when one gets an autoimmune disorder then others can crop up... Have you had bloodwork to address other causes? B-12, iron, thyroid,glucose,adrenal fatigue,CFS.These are just a few things I would check out ...A good routine physical also...

Takala Enthusiast
Takala
Posted
.... "muscle weakness.... brain fog.... skin problems"

You may want to start by getting another doctor, as anti- depressants will NOT fix your celiac symptoms, but may further alter the function of your gut in a negative way. Your symptoms are those of classic auto immune disease attacks. To suggest a mood altering drug with side effects for this is incompetence. You are either getting cross contaminated with gluten, and/or you have something else going on, such as auto - immune thyroid disease, which regular thyroid hormone test levels won't pick up - you have to get the test for the thyroid antibodies, which some doctors will not do, and then tell you your test results were "normal."

I have sero negative arthritis in addition to the gluten intolerance, and have had that up and down cycle most of my life, I have to force myself to do PT exercises for going on 2 decades now to maintain what appears to be normal function, because I also have c- spine damage from bone loss - but I "look" normal and my body is actually athletic, so I get blown off all the time by doctors unless I carry documentation - and I've even had more than one doctor ignore that, and tell me they couldn't "do a thing for me" when I was having horrible symptoms and needed surgery or emergency care (which is why I will not willingly go into an HMO system again so some dimwhit at the bottom of his class can tell me to "live a healthy lifestyle.")

If I get glutened I get ataxia, (loss of balance) which is a very big motivation for me to not get glutened because it is a sign of ongoing possible brain and nerve damage. I have worked too hard and regained too much to screw myself up deliberately.

You may also want to start looking for another job now, while you are employed, which makes you much more hire- able, which has less stress, if you feel like you cannot handle the long hours of this one.

Also, whatever you do, be sure to 1) wash your hands before eating, with a safe soap, and rinse well, and 2) don't eat common cafeteria food !

RGB Newbie
RGB
Posted
  • Author

Thank you mamaw and Takala for your advice.

I have had blood work done, iron checked several times, and just had my physical/blood work. I've received conflicting information from different doctors...some saying I'm anemic and others saying my iron is normal. I'm also already on a low thyroid med as well as a low hormone replacement...and again another doctor disagreeing with that too. I don't know what doctor to actually go to any more...PCP, GI, OBGYN, Dietician, Naturalist, Hemotologist, endocronologist, etc. I've been to all of them and think I may have to start playing "ring around the rosy" with all specialists again. ;(

I don't know if I have had my adrenals checked...should I do that through a PCP or GI? I've also been asking for specific tests to be done as the doctors don't seem to openly offer them. Only through research and talking with my mom (who is a nurse) have I discovered some of the tests to ask for. Have you run into this issue too?

After reading your responses I probably do need to take simple extra precautions like washing my hands more and such, so I will concentrate on those efforts more.

As far as my employment...I feel like my condition may appear as "mellow dramatic," but it's definitely very real. I also get so frustrated with myself because I'm used to being highly energetic and an extreme multitasker...yet I now struggle with focusing on how to do the simplest tasks. Is this also related to celiacs? It strongly hinders me from trying and wanting to pursue new things.

Thanks for listening and offering your advice...I really appreciate it.

pricklypear1971 Community Regular
pricklypear1971
Posted

1) an additional food intolerance or unknowingly having gluten exposure

2) you need a different thyroid med and someone to address the full circle of thyroid - supplaments, meds, adrenals, hormones

3) another ai disease?

4) you need a good functional medicine doctor like an ND. A good one. They're hard hard to find. Check the licensing board in your state. Then talk to people, read about them, find one that specializes in endocrinology.

mamaw Community Regular
mamaw
Posted

If you are planning on having your adrenals checked I suggest going through the Canary Club for there test. Mainstream doctors just don't get the full adrenal test...This one checks four times am, noon, pm, night... I'm not sure but I don't think insurance will pay for it...

Thyroid is aother problem as again maiinstream doctors(endos) only treat with T-4 or the majority...Yahoo has several sites that give wonderful info about the thyroid. Thyroidless group, Iodine group, & phoenix (sp?)

mamaw Community Regular
mamaw
Posted
Open Original Shared Link
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Open Original Shared Link

Good one. Also Open Original Shared Link

AVR1962 Collaborator
AVR1962
Posted

Yes, I too was doing that 2 steps fwd, 1 step back. I too had the fatigue, muscle weakness, off-balance, brain fog. Definately get the thyroid checked but also really make sure of your diet.....no gluten in anything. I had to really do a thorough clean up with my kitchen and all the products I was using. My balance came back when I really cleaned up my gluten diet and my kitchen. Strength came back slowly, I really had to work on the nutrition. I was having alot of aches in my bones and joints, took some extra D for a short term but put actual boiled chicken broth in about everything I ate to get more gelatin for the joints it made a diffeence for me, I know that sounds strange but there is alot to be said about actual chicken broth (not just bought).

In my case, eventhough I was feeling better I was still having issues that would rise and docs could not give me answers. I finally went to a no grain, no sugar diet and well, that was the answer for me. Something to think about. Raw foods, leans meats and nuts. I can eat aged cheese without issues but I take in no dairy products.

Do make sure of your vits, very important!

India Contributor
India
Posted

Regarding stress and work - my advice would be to remember that you come first and your health is more important than your job. It's also crucial to make sure you have a good work/life balance - you need those hours away from work to recover and recharge. And try to find ways to leave the stress behind when you leave at the end of the day.

Good advice but hard to follow, I know - I struggle with the same problems. But stress does make my coeliac disease worse and I know it's important to try to give life as much priority as work.

RGB Newbie
RGB
Posted
  • Author

Thank you all so much for your advice.

I actually went to see a new GI a couple days ago and walked out in tears. For some reason some doctors (not all as there are some GREAT doctors out there) have a way of making a patient feel so stupid and illiterate regarding their symptoms, as well as marginalizing the realization and seriousness of their symptoms. SO FRUSTRATING!!! I'm debating if I even want to try an Endocrinologist at this point, or just throw in the towel on healthcare system.

I just received information on a good ND near me that I will contact for a consultation. My friends are going to him regularily and experiencing some great results (though they are not celiacs). Hopefully he can help me regain my strength & energy again.

Thanks again for all the advice. I've been checking out the web links and trying the suggestions you've made. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.