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


1desperateladysaved

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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?


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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.

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    • asaT
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    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
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