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Please Help! Could This Be Cd?

Jocelyn357

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Jocelyn357 Rookie
Jocelyn357
Posted

Hi everyone. I am so glad to have found this board, and after a week of just reading, I've decided to seek some advice. So I appreciate any help you can give me. I know there are over 200 symptoms to celiac, and intolerance. I've done alot of reading on here already, but just wanted to see if my particular "set" of symptoms is typical.

-I have pretty much been constipated my WHOLE life (26 yrs). I have a BM maybe every 2 to 3 days, occasionally longer. Sometimes it makes me feel sick, other times no pain. Maybe because it's all I know. When I do finally go, sometimes it presents itself with stomach pains or diarhea. Not all the time. If it is a stomach ache, though, I almost feel like I'll pass out it hurts SOOO BAD.

-I have been chronically fatigued since childhood. I cannot EVER remember ONE DAY when I was not tired from beginning to end. Not in my whole life. It has always made it hard to hold a job/school, even socialize. I can go out for a bit, but am always the first to leave because I just need to lay down. I have learned every excuse in the book to tell people why I need to leave a get together, or why I cannot participate in something.

-Low immune system. If it's out there, I get it. When I get sick, I get REALLY sick. Usually end up in the ER. I never get just a "little" cold. I pretty much never feel good, so if I get sick, it's bad.

-Diagnosed sever panic disorder at 18, but had it since childhood. Taken med's for 8 years and don't suffer from "panic" often, but live with generalized anxiety pretty much all the time.

-Was always very thin until I turned 17, then WHAM! Overweight. Have lost significant weight twice, but unable to keep it off. Now at the "low end" of obese.

-Can't eat much bread. Gives me SEVERE heartburn/acid reflux. Sometimes feels like my esophegus is burning off.

-Suffered from 3 seperate long episodes of a skin rash when I was younger. Very itchy "pimple like" on legs, knees, hands. Doc thought I was allergic to flee bites so we got rid of cat. Rash came back several years later. Haven't had it in a long time.

-ADD like symptoms. Score with high IQ, always told I'm very intelligent, but never been able to make it through school. VERY hard for me to sit and listen to a lecture, plus fatigue sets in.

-Neurological issues- severe blurred vision, when I was 18 I had SEVERE episodes of dizziness where I would stand up and fall down, sometimes black out. Doc thought seizures but EEG normal.

Sorry this is so long. I'm sure I have more to share, but these are my really bad symptoms. I pretty much live with this crap all the time. Sometimes it's better, sometimes worse. I guess I just thought I would always have to live with it, till a friend with celiac said some people in her support group have similar experiences. I'm tired of making up excuses as to why I can't be with friends, have a life, etc. Does this sound like celiac to you? I started gluten-free diet right away, because that's how desperate I am. Insurance is all messed up right now, but would be willing to do Enterolab. Is it worth it/accurate? Help!

Thanks,

JOCELYN

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Jocelyn357 Rookie
Jocelyn357
Posted
  • Author

Also forgot to mention gas and ALWAYS bloated.....YUCK!

Guest kmmolina
Guest kmmolina
Posted

Hi Jocelyn...also glad you found this board. It has been a world of help to me and as I read through all the threads...it looks as if it has been helpful to everyone else. I'm not a medical professional but if it were me I would ask to have the blood work for Celiac done to see if you have the antibodies. Just in case you have not already read this...don't go off gluten until after the tests are done; that could give you a false reading. Good luck...Kathleen

SueC Explorer
SueC
Posted

Hi Jocelyn,

Welcome!

Yep..... ALL your symptoms sound like celiac disease!! :( If nothing else your skin rash is concerning. It sounds like DH but of course can't be sure without a biopsy. I had DH for years while doc after doc told me it was exzema........

If you don't have the money for testing try the diet. If it works and makes you feel better that's all you need. If you do decide to do Enterolab make sure you go back to eating gluten!!!

Good Luck!

KaitiUSA Enthusiast
KaitiUSA
Posted

I hear great things about Enterolabs.

Obviously since you are gluten free testing should not be done because you need to be on gluten for that.

How long have you been gluten free? Any improvements?

I think it sounds like a possibility of celiac

Jocelyn357 Rookie
Jocelyn357
Posted
  • Author

Thanks for the quick responses! I have only been gluten free for 4 days. Just in the 4 days, I've had no gas problems or acid reflux which is amazing. We are in ministry and I don't have the money to pay for Doctor stuff, but may be able to swing enterolab work. BTW, my rash was not much like ecsema, but more like bug bites all over. But they happened multiple times over years. 2nd day on gluten-free diet, I had a bit of a stomach ache and diarrhea. 3rd day, had another BM, no pain. 2 days in a row BM? Amazing.

SueC Explorer
SueC
Posted

A positive dietary response is a big indicator for celiac. I say keep on with the diet but if you want a positive diagnosis via Enterolab you need to be back on gluten for a couple of months.

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Rachel--24 Collaborator
Rachel--24
Posted

Jocelyn,

I just got my Enterolab results only 2 days ago and I can tell you it was worth every penny. I've had so many tests done over the past 2 1/2 years with everything coming back normal yet my whole world was falling part. I did figure out in the last year that something in my diet was making me sick...just didn't know exactly what until now. The Enterolab was the first test to come back positive. I did get dramatically better after taking gluten out of my diet but just wasnt aware of all the places where gluten can hide so I continued to get sick. I feel very bad for you since you've been feeling this way all your life. I've only been sick for 2 1/2 years so I can't imagine all you've gone through. I do know how it feels to not be able to hang out with friends because of feeling too exhausted and depressed. I could never make plans anymore because I would always end up breaking them anyways and after awhile people just don't ask anymore. I couldn't understand why I couldn't even eat a meal or drink a beer without feeling totally spaced out and sick. I also had severe blurred vision and dry eyes...went to the eye specialist several times but like everything else they couldnt find anything wrong. I'm sure now that gluten was/is the cause of most if not all of my symptoms. I was also probably borderline suicidal a few moths back when I was eating normally. I was miserable EVERY day but when I changed my diet the depression was completely gone in only a few days...it was a very dramatic change back to my happy self. I know my physical symptoms will take longer to go away but they are much much better than when I couldnt even get out of bed. I felt like I lost my mind before I stopped eating gluten...I couldn't focus on anything and I had trouble with my memory. I was in a daze all the time and even though all my life I was a quick learner I all of a sudden couldn't seem to grasp anything. Thankfully, I dont have these problems anymore. I hope you experience the same results from taking gluten out of your diet...remember to check the unexpected places like lotions and stuff like that. Those are the things that were making me sick when I thought I was gluten-free. I do highly recommend Enterolab but if you don't want to spend the $$ just yet...see how the diet works first. You don't have to be eating gluten to do the test so there is no rush. Hope you feel better soon :)

Smaddenil Newbie
Smaddenil
Posted

Well, at first I was diagnosed with Irritable Bowel Syndrome and my GYN said to take a stool softener every day. At first, I didn't but later I did. Now I never miss the stoof softener. I realize a lot of people here have diahrhea (sp!) but I am usually constipated with bouts of the other. My doctor said to try a gluten free diet or get the tests, but they are not pleasant so keep to the gluten-free. I am intending to go with the Specific Carbohydrate Diet after our trip the next two weeks, but I will still stay gluten free. I don't want to spend a trip to Europe writhing on the bed! Stay happy! There are such worse things to happen!

Suzanne

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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