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

1desperateladysaved

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1desperateladysaved Proficient
1desperateladysaved
Posted

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
mommida
Posted

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
bartfull
Posted

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
GFinDC
Posted

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
love2travel
Posted

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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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