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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,957
    • Most Online (within 30 mins)
      7,748

    Dogdad21
    Newest Member
    Dogdad21
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.