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Janie10rg

New And Overwhelmed To The Gluten Free Diet

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About a month ago i had severe diarrhea all the time for about a week. I thought this was very abnormal. Also in the past i had the runs first thing in the morning or shortly after breakfast and this has been going on for a few years and i thought it was just lactose intolerance(but it didn't always happen if i had milk products).

I went to a walk in clinic since my pediatrician would take a long time to see me. So the doctor that i spoke to told me to go off milk for a week to see if i notice any difference and to take a blood test. They tested for many things.

The results from the blood work came back and I was quote surprised. I was told that something was wrong with my small intestine because I cant digest gluten. The doctor mentioned a bunch of tests to be able to confirm if i have celiac or gluten sensitivity but i cannot afford to do it right now. So for the time being the doctor told me to go on a meat and vegetable in soup form diet for a few days(im not sure why) and to avoid milk, bread, pasta, potatoes,lentils and processed foods. But this has made a huge difference. But now im allowed to eat fruit and not have food in soup form. The diarrhea has pretty much disappeared except i guess some thing that i didnt read the ingredients on has gluten in it. I also noticed the bloating i had went down too. And in a matter of a week i lost about 15 lbs. The doctor said I should expect to lose about 40. I was 165.Now 150.

I also have very low iron and vitamin B12. And as far as i know I have no idea where the gluten intolerance came from because i dont know of anyone in my family who has it. Diabetes is prevalent though.

I guess now i just want to know if i have celiac disease or gluten sensitivity and what the difference is? Because the intestine issue could be potentially serious and I do want to have kids one day.

I guess i'm just looking for other peoples opinions and experiences.

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It would be helpful to know what blood test they did. See if you can get a copy of your results. If it was a full celiac panel, and it came back positive, AND you are feeling better on the gluten free diet then it is likely that you have celiac disease.

Not having anyone in your family with it is not a big deal. Many, many celiacs go undiagnosed (or misdiagnosed), so it could be in your family - they just don't know it. A family history of other autoimmune disorders is also a red flag.

It is my understanding that gluten sensitivity and celiac disease are different in that celiac disease is an autoimmune disorder, where your body is creating antibodies that attack your small intestine. Gluten sensitivity just means that when you eat gluten, your body reacts with uncomfortable symptoms. For the most part, the symptoms are the same and the treatment is the same - DO NOT EAT GLUTEN. Some doctors think being gluten sensitive is the "early stages" of celiac disease . . . you body just hasn't had any measurable damage done yet.

If you are unable to continue with further testing (biopsy) at this time, I would continue on the diet and enjoy the results. I would behave as if I had been diagnosed with celiac disease - NO CHEATING.

Cara

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I'm new also and just want to say I know how you feel -- I've been wanting a definitive diagnosis too but can't really afford more tests.

I guess since the treatment is the same, it makes sense to just stick with the diet anyway, but I do understand your wanting to know exactly what it is. It sure seems that both celiac and gluten intolerance can sometimes be tricky to diagnose, though... my doctor thinks I should just accept that I'm doing better gluten-free and leave it at that.

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The beginning is overwhelming.

All we can do is make a decision, committ to it, and continue to peel the layers of gluten off.

No matter what!

; )

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....I guess now i just want to know if i have celiac disease or gluten sensitivity and what the difference is? Because the intestine issue could be potentially serious and I do want to have kids one day.

I guess i'm just looking for other peoples opinions and experiences.

Well, this Facebook link is working just the way I wanted. but the gist is that we don't know yet what NCGI does to a person or how to treat other than the gluten-free diet. It's from the University of Chicago Celiac Disease Center FB page.

https://www.facebook.com/CureCeliac

The medical and scientific communities still don't fully understand the mechanisms (pathogenesis) of gluten sensitivity. There's currently *no* scientifically/medically-approved screening test, but it's one of our research priorities to find a marker for it.

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