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99.999% Sure I Have Celiac

WesternMA12

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WesternMA12 Newbie
WesternMA12
Posted

Hello everyone, a friend of mine recently sent me an article/video about Celiac disease because she believed I had it. All my life I have been someone who just as "an overly sensitive stomach." When I was younger we used to joke that I'd thrown up in every restaurant in my hometown because when I was younger I used to vomit a lot, mostly after going out to eat. I have always just thought that I just had a sensitive stomach, and that was that.

However, it appears as if symptoms of those with celiac describe me to a perfect T.

-Upset stomach nearly every time I eat and sometimes nausea (regularly)

-Diarrhea everyday, constipation on few days i don't have diarhea

-bloating, gas

-rash on my wrists/elbows

-I was anemic when I was younger and I fluctuate now. I could not give blood the other day.

-Often feeling weak and dizzy

-fatigue even though I sleep about 9 hours a night

Any help here? I am away at school and cannot go to the doctor for another week, but I am becoming very nervous. Thank you!!!!

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Skylark Collaborator
Skylark
Posted

That could definitely be celiac. Don't be nervous. If you're celiac, you change your diet around and the lifetime of stomach problems disappears in a few months! Figuring out I was celiac changed my life. I had a "nervous" stomach, IBS, gastritis, and would spend days curled up with a heating pad. That's all gone. My stomach is "cast iron" now as long as I don't eat gluten. It's really nice to have a normal digestive system.

Good luck at the doctor, and do try the diet once you've had the testing done. There are a lot of false negatives and people with gluten intolerance that doesn't show on the tests.

ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like you belong here. If the rash you speak if is blistery, very itchy and leaves long lasting purplish scars you may have DH. You could see a knowledgeable dermatologist and tell them you suspect DH, the skin form of celiac, and request a biopsy for it. Just make sure that they biopsy the skin next to your lesions not the rash itself. It also wouldn't be a bad idea to ask for a celiac blood panel. Do be aware there are false negatives with testing so a strict trial of the diet is needed no matter what the results.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Thank you guys for the replies! I have a question about the rash, I have gotten this rash in between my elbows every year for about the past 5 as long as I can remember. This is the first year I have gotten it on my wrists as well. This summer I got it REALLY bad on my wrists. I worked at a cafe as well as an ice cream shop and I had to call out from work a lot because you wouldn't want anyone serving you with that kind of rash!

So could it still be celiac related even if it comes and goes? I've had it consistently since summer, but in spurts it gets worse and better although right now it is flaring up.

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

Thank you guys for the replies, i appreciate it!

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you guys for the replies! I have a question about the rash, I have gotten this rash in between my elbows every year for about the past 5 as long as I can remember. This is the first year I have gotten it on my wrists as well. This summer I got it REALLY bad on my wrists. I worked at a cafe as well as an ice cream shop and I had to call out from work a lot because you wouldn't want anyone serving you with that kind of rash!

So could it still be celiac related even if it comes and goes? I've had it consistently since summer, but in spurts it gets worse and better although right now it is flaring up.

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

Thank you guys for the replies, i appreciate it!

The DH rash can come and go. It depends on the person. I was covered with it as a child but by my teens it went down a bit but then flared again in adulthood.

Don't be nervous about asking your doctor for testing. They should IMHO be testing everyone in the country like they do in some European countries. You doctor really should have already offered to test you. Your doctor works for you don't let him or her intimidate you.

You also have the option of just going gluten free, very strictly, and seeing if it helps. You don't need a doctors permission to go on the gluten-free diet. That said if you do go gluten free and decide later you want to be tested you would have to challenge gluten by eating it daily for up to three months and you still might get a false negative on the tests.

Skylark Collaborator
Skylark
Posted

I am nervous about going to the doctor because it seems lately that being gluten-free is "trendy" which has good and bad implications for celiac people. I'm nervous I will be written off!

The diet does not require a prescription or even a doctor's agreement. B)

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Very true! Unfortunately, because I am a student at a university I eat at the dining commons and in order to be accommodated for I need a form from my doctor.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Very true! Unfortunately, because I am a student at a university I eat at the dining commons and in order to be accommodated for I need a form from my doctor.

All the more reason to bite the bullet and get the testing done.

shopgirl Contributor
shopgirl
Posted

Wouldn't you rather know so you can start getting healthy? The anxiety you feel could be part of the Celiac itself. Anxiety was a huge symptom for me. It's not always easy being gluten-free but it's better then being sick all the time. Get tested so you can move on. You'll always get plenty of help here. :)

WesternMA12 Newbie
WesternMA12
Posted
  • Author

I know this is probably TMI but I forgot to mention that I have mucus in my stools often. The symptoms just keep coming! Ugh. However, I am worried that it may not be celiac because I am not underweight. I am a very healthy weight.

ravenwoodglass Mentor
ravenwoodglass
Posted

I know this is probably TMI but I forgot to mention that I have mucus in my stools often. The symptoms just keep coming! Ugh. However, I am worried that it may not be celiac because I am not underweight. I am a very healthy weight.

Not all celiacs are underweight. Some are quite overweight, some are close to average and some are under. I think the mucous is your system trying to protect itself from the gluten. You should mention it to your doctor along with everything else. Make sure that if your tummy wakes you in pain at night that you tell the doctor. That lets them know that you don't just have IBS because IBS doesn't do that.

WesternMA12 Newbie
WesternMA12
Posted
  • Author

Alright I was confused if being underweight was a major symptom of celiac. I have diarrhea so often I am confused as to how my body is absorbing anything.

After posting the photo of my rash in the DH thread and doing some more research I am sure I have celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

Alright I was confused if being underweight was a major symptom of celiac. I have diarrhea so often I am confused as to how my body is absorbing anything.

After posting the photo of my rash in the DH thread and doing some more research I am sure I have celiac.

Yea I couldn't figure that out either since I was the heaviest I ever was the last few years before diagnosis and my D was basically constant 24/7. I am naturally a slender person and went back down to my normal weight fairly quickly after diagnosis.

shopgirl Contributor
shopgirl
Posted

I read once that, in some people, if you're not absorbing vitamins and nutrients right, your body goes into a survival mode where it clings to everything you put in it

chasbari Apprentice
chasbari
Posted

I read once that, in some people, if you're not absorbing vitamins and nutrients right, your body goes into a survival mode where it clings to everything you put in it

shopgirl Contributor
shopgirl
Posted

Very much my experience as well. Nobody thought I was ill because I looked "healthy" (ie: overweight!)

Me, too. That's why I was so elated to find that information. The weight fell off when I went gluten-free but the theory certainly makes sense. If I didn't know when I'd be able to get food again, I'd start hoarding it too. I was kind of pleased with my body's (misguided) resourcefulness.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
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      By barb simkin · Posted

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    • barb simkin
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