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Do They Know What They're Doing?

gabrielle

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gabrielle Contributor
gabrielle
Posted

I have lost 20 pounds since last year and my doctors assumed that perhaps i had a gluten intolerance. Since December '04 i've had multiple blood test, that no one will explain to me- all they told me was that a test came back positive and i should condsider a gluten-free lifestyle. I finally went to a GI dr. and he gave me a sprue panel test, and i am awaiting the results. I really do not want to get the biopsy done, is that really necessary??? I am finding that I feel better on a gluten-free diet, but is it all in my mind? I'm worried that they diagnosed me with Celiac Disease, and it may not be the case. I do not understand how you can have a Gluten intolerance but not be celiac.... Can someone please explain this to me..... Please!! I'm desperate.

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Some people can have allergies to gluten or wheat and some people can have Celiac Disease where the villi in the intestines are damaged by eating gluten.

You do not have to have the biopsy if you have positive blood tests and feel good with the diet. I never had the biopsy but my brother did (he wanted more proof). It's up to you.

If you feel like your doctors are giving you a headache demand answers or get a a new doctor who can explan things to you and make you happy.

gabrielle Contributor
gabrielle
Posted
  • Author

thank you very much for responding. i really appreciate it.

KaitiUSA Enthusiast
KaitiUSA
Posted

You have on your signature 3 months gluten-free...if your doctor just took blood then they would come back negative because you have been gluten-free. Also I never had a biopsy because my blood tests were proof enough for my doctor, GI doctor, and me. We also request copies of blood tests...you need to be firm with the doctor and demand them explain it to you if you do not understand what is going on. Good luck :D

gabrielle Contributor
gabrielle
Posted
  • Author

Thank you for the replies. But the reason I am so confused is because my family doctor gave me a blood test (ANA screen?) and that came back positive- with that he said that I had Celiac disease. I had no idea what it was or what i had to do- so they told me to be on a gluten-free diet until i could see a GI doctor- This was in January. I just got my Sprue panel yesterday and I am worried since i have been gluten-free that it will be negative- and they will want the biopsy.... but im scared! :( Will the blood test def. be negative after roughly 3 months?

KaitiUSA Enthusiast
KaitiUSA
Posted

Yep the blood test would be back negative if you were gluten free for 3 months. That's how they monitor compliance of some people because going gluten free brings the levels down.

I never had a biopsy but some people opt to. My doctor and I found the blood test to be more than enough evidence that I had it.

Your biopsy may come back negative as well. If you had minor damage to begin with and have been gluten free that could have healed. They recommend you being on gluten for about 3 months straight with a gluten filled diet when testing.

If you didn't want to do that check out an Enterolab..they do not require you to get back on gluten. Open Original Shared Link This is their website and it might help you out a bit with questions you have.

If you were told you have celiac and had positive effects from the diet then why do you need more testing?

tarnalberry Community Regular
tarnalberry
Posted

I would encourage you to go back to your doctor and get the results from him/her. (You can have the office mail you the records if you're worried about getting them from him/her in person.) Then you can better understand the information that your doctor is working with. Feeling better on the gluten-free diet is a test in and of itself though, and it's always good to listen to your body!

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judy05 Apprentice
judy05
Posted

Gabrielle,

I'm glad thet I had the Endoscopy done even though my biopsy was negative and the villi was normal. The doctor found severe esophagitis which was causing a lot of the acid reflux problem. It has to be checked every year because it can lead to Cancer. I'm glad that I had the whole tract checked, it is better to be aware of the problems instead of wondering all the time what "might" be.

I have Gluten Intolerance, not Celiac because I don't carry the"gene" for Celiac. There's supposedly a few of us who do not have the gene but yet can be diagnosed with it. I don't have damage to my villi but maybe would have developed it by staying on a gluten diet. My DR. is very good but insists that I don't have celiac. I also cannot tolerate casein/dairy.

Ask your Dr for the gene test then you will know for sure. Hope this helps... :)

KaitiUSA Enthusiast
KaitiUSA
Posted

The problem with the gene test is 2% of celiacs do not have it and 30% of people who don't have it also have the gene. It is a good bet though considering 98% of celiacs have the gene but its not a sure bet.

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