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Is This Really Celiac?

Chrisco

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Chrisco Apprentice
Chrisco
Posted

I was diagnosed with Celiac on Thursday however I still am not sure if I really have it. I have been have had chronic nausea since I was 14 years old (16 years now). I also suffer from terrible anxiety and deppression. I have seen tons of doctors and no one could ever figure anything out. I had my gallbladder removed 5 years ago because a test showed that it was not working properly however when they took it out it was not "sick". I finally found a doctor who listened to my symptoms. At my first visit with her she told me she was convinced that I had Celiac disease. I had the blood test done but it came back negative. I do have a Vitamin B12 deficiency which made her feel that even though the Celiac panel was negative I may still have it. So I had an endoscopy done, but the GI doctor was convinced that I didn't have Celiac and although my General Doctor referred me for the endoscopy to test for Celiac and I spoke with him about it at the consultation he did not test me for Celiac when he did the scope. So I basically had it done for nothing. Now my insurance won't cover another one for a while. My General Doctor was pretty annoyed that the GI Doctor dropped the ball but there's nothing we can do about that now. So she sent me to have another blood test to test for the Genetic Marker for Celiac. It turns out I do have the genetic marker. Based on that and my symptoms she made the diagnosis and has asked me to start a gluten free diet. I have a hard time with the diagnosis. Has anyone else tested negative on the Celiac panel blood tests? After researching Celiac it makes a lot of sense that this is what I have. I developed a skin rash when I was a teenager on my legs. They were little blister type sores that were very itchy. At that time I was told it was from shaving and I was not given medicine for it. It eventually cleared up after a few months. Then about 5 years ago I developed a rash again. This time it was tiny bumps and the itch was so intense. It started on my upper thighs and then I got it behind my knees. I was told it was eczema and was given a cream which cleared it up. I haven't had it since. I am wondering if either of these rashes were associated with Celiac. I also had a bout with cold sores in my mouth. I think I was about 16 when it happened. It was very painful. I broke out in cold sores throughout my mouth. Again the doctors had no idea what it was and it eventually cleared up. The mouth sores and rashes happened when my digestive symptoms were at its worse which makes me think this has to do with Celiac. I have suffered for so long and I just want to be sure that it is Celiac. I am bummed that I have to give up gluten because I am a carbohydrate junkie and live on crackers and bread but if that's what I have to do to feel better then I have no problem giving it up. I guess my problem is that because my blood tests came back negative for the Celiac antibodies I feel like I don't have Celiac and that my Doctor may just be telling me this to "shut me up". This may sound paranoid but I have had so many bad experiences with Doctors that I don't trust them. I would really appreciate it if anyone with a similar experience could share their story with me.

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tarnalberry Community Regular
tarnalberry
Posted

False negatives are common.

You can always try the diet for two or three months, and see if anything changes.

daniknik Apprentice
daniknik
Posted

My blood tests came back negative for Celiac twice...but when I had the stool testing done, they results were positive for anti-gliadin, anti-tissue transglutaminase, and andi-casein. I also carry the genetic markers for celiac DQ8 and non-celiac gluten sensitivy DQ6 and have been told by my primary doctor that I don't have Celiac (I'll see her again in two weeks to discuss the new results) but I know that all of my symptoms align with those typical for Celiac patients (and my grandfather was a diagnosed Celiac at 60yrs of age). I'd say, if you have the symptoms, and nothing else is helping...why not give the diet a try?

Here's another thought. The "cool" thing about Celiac is that you don't need to take drugs to make yourself feel better. All you need to do is watch what you put into and on your body. That's a whole helluva lot better than popping tons of pills that don't even fix the problems. Hang in there!

Reba32 Rookie
Reba32
Posted

you can be gluten intolerant, and not have Celiac disease. Gluten intolerance is not likely to show up in a blood test, and it won't show up on an intestinal biopsy.

Gluten intolerance is the precurser to Celiac disease. The only way to "cure" either one of them, is to go gluten free. Unfortunately for gluten intolerance without Celiac, the only real diagnosis is to go gluten free and see if you start to get better.

Chrisco Apprentice
Chrisco
Posted
  • Author

Thanks all for your replys. I started the gluten free diet yesterday and I'm already feeling better. I usually feel nauseaus and bloated immediately after I eat and since starting the diet I haven't had that problem. I'm hoping that my other symptoms will go away soon. I see the Doctor in 6 weeks for another blood test to check my B12 levels. I think I'm starting to accept the diagnosis. I guess I am in denial because for so long I was told I was making my symptoms up, I was making myself sick, and that it was all in my head. When you've been told that for so long you believe it. It sucks having to give up a lot of foods that I love but I'm glad that this can be treated with diet and I don't have to take any more medication. I am hoping that I will feel well enough to stop taking my medications soon.

mushroom Proficient
mushroom
Posted

Thanks all for your replys. I started the gluten free diet yesterday and I'm already feeling better. I usually feel nauseaus and bloated immediately after I eat and since starting the diet I haven't had that problem. I'm hoping that my other symptoms will go away soon. I see the Doctor in 6 weeks for another blood test to check my B12 levels. I think I'm starting to accept the diagnosis. I guess I am in denial because for so long I was told I was making my symptoms up, I was making myself sick, and that it was all in my head. When you've been told that for so long you believe it. It sucks having to give up a lot of foods that I love but I'm glad that this can be treated with diet and I don't have to take any more medication. I am hoping that I will feel well enough to stop taking my medications soon.

If you are gluten intolerant and not absorbing nutrients, you probably should have Vit. D, Ferritin, folate, calcium, magnesium. potassium, Vits. A, E & K checked too. All those can be deficient and lead to other problems like osteoporosis, fatigue, etc., ad nauseum. By the way, my PCP wanted to send me to a psychiatrist, too, and the only diagnoses she could come up with were IBS and fibromyalgia :( . (I was deficient in B12, folate, D)

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