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

How To Deal With Celiac Before You Know You Have It!


1desperateladysaved

Recommended Posts

1desperateladysaved Proficient

I First I tried rest to overcome the fatigue.

I then tried strenous excercise to wake up my tired body.

I paid more attention to what people were saying about how to have a healthy diet. People think I am obsessed with it. What could I do?

I paid more attention to having a clean (green) enviroment at home.

I studied herbs and supplements and used them.

I kept trying to act as if nothing was wrong because I had no documented reason not to.

I would try something new, it would appear to work, but suddenly I realized that I was just as bad as ever.

I am not sure if I made it clear enough yet that I studied health topics intensly. I have books on nutrition, herbs, and natural healthcare. I don't let any tests the doctors give go by without understanding them. My doctor is afraid I will ask a question too hard for her, so she carries her hand held computer when she talks to me. Another doctor I talk to sits behind his laptop. I have noticed others on the forum too that have coped these same ways.

Is this how you coped with Celiac before you knew?


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Nope. I didn't eat before going out of the house. When my day was done, then i would eat and have debilatating "D" all night long. O h I survived out of the house for a full day by drinking mountain dew and smoking cigarettes to fight off the hunger. B)

bartfull Rising Star

Me neither. I KNEW I had it, but was in denial. Mom had it and I was very familiar with celiac. I knew the odds were against me but I was too lazy to give up my junk food. I kept telling myself it was just that I had damaged my gut with too much alcohol. Kept telling myself the psoriasis was just my bad luck. I kept telling myself the lack of energy and brain fog were because I was getting older, and that the insomnia was something I had had all my life because my circadian rhythums were different from everyone elses.

It was only when the psoriasis got so bad I couldn't play guitar without extreme pain that I finally admitted it. Then I came here and found out that every symptom I had WAS because of celiac.

GFinDC Veteran

Before I knew I had celiac

I had lactose intolerance and thought that was the problem. So I avoided dairy for the most part hoping that would fix the symptoms. I bought lactaid pills and anti-histamines every week. Lots of aspirin too. I figured my reactions to bread were because of the dairy content. Duh. I got scratch testing for my hayfever allergies and got shots for them. I had lots of trouble sleeping and a lot of pain in my gut. My joints hurt. I had a pale complexion. My feet and ankles were always very swollen. I thought I might have diabetes. I thought I might have thyroid problems, and indeed I do. I had gotten sick in Korea when I was in the military stationed over there and my digestion was never the same after that. So I figured my problems all stemmed from that sickness. Maybe they did, I don't know. Maybe that was my trigger for celiac. I went downhill and stayed down there for years. I just wasn't the same person I used to be. I couldn't do the things I used to do and wasn't interested in them anymore. Maybe I was just maturing. Nah, that can't be it! :)

I went to a doctor about my gut pain and he ran tests on my blood and poked and prodded my abdomen. I told him where it hurt. The blood test he ran showed nothing wrong except my cholesterol. They thought it was really high. They called me back a week later and said they made a mistake, my cholesterol was actually very good, excellent in fact. Better than most people, even athletes. Great news right? But they couldn't explain my gut pain and didn't try anymore. The test they ran showed no problems so I was fine. Wrong.

My older sister Pam figured out what my symptoms added up to, celiac disease. Life is better with sisters.

love2travel Mentor

My story is different. I had absolutely no idea I had anything wrong with me! My sister told me she was diagnosed as gluten intolerant so I thought I'd casually mention it to my doctor, knowing there was no way I had it. I wasn't sick at all. Food is top priority with me - always has been. Anyway, the doctor said my bloodwork was positive! Talk about stunned. I did not believe him so he made me see a GI who did scopes. My husband came to that appointment with me. The doctor said, "I have good news!" Man, was I thrilled. He said, "You don't have cancer. You have celiac." Sadly at that point I felt as though I were dealt a life sentence with no chance of parole. But I believed him. He showed me a video of my scopes and explained that my villi were completely flattened.

So, if my sister hadn't been dignosed I would never have known (until future problems popped up I would imagine). Sometimes I still wonder whether it is true but of course I know it is. So, I am strictly gluten free and feel no different. At first motivation was difficult. Why would I not eat gluten if it didn't make me sick? It didn't make sense. Until I came here and learned all about it. I am nearly 100% certain my Mom has it but she believes her negative bloodwork and that is that. She has about 50 symptoms and I am not exaggerating. It seems so obvious to me!

ETA: In retrospect there ARE symptoms I did not correlate with anything at the time (i.e. multiple miscarriages - I was unable to have children). Sensitive teeth as well.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      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
    • Jillian83
      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
      @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    
×
×
  • 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.