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Jackyhy

Gone Gluten Free But Need Diagnosis?

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Hi all, just had a question and I'm not sure if my doc will know the answer. I have been feeling terrible for the past 2 years. Every since I got pregnant, I had 9 months of feeling like I had cancer and was going to die. Everyone kept saying it was just the pregnancy. My baby is now 15 months old and I am at my wits end. I have been to the doctor more this year than ever before. I feel horrible all the time. Migraines no energy, nausea, sick all the time. It can really beat a person down. After being sick on Christmas I had had enough. I know people that have been diagnosed with celiac disease after just generally feeling bad for a long time. I have not ever thought it might be celiac disease but my husband reminded me again what my diet has been like since having the baby. Cereal and bagels etc(nothing but gluten)anyway. I went gluten free three days ago and I feel great(I know that seems crazy and way too quick of a turn around but I feel human again). Everything tells you not to go gluten-free untill you see your Dr and get a diagnosis because after you go gluten-free it will be negative. I have a doctor that is pretty open to anything so I know he will order the lab for me but my real question is will the lab be negative even though I will have only been gluten-free for a few days to a week? Any input would be greatly appreciated!

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A lot of people on this board think that your positive results would be enough to stay off of gluten. Ultimately you have to decide how important a diagnosis is. The one thing I really regret is not waiting to go gluten free, but I had other pressing health problems that forced me to do it, so... OH WELL!

If you want a better chance of getting positive lab work, you will need to stay on gluten. Keep in mind, if you have negative blood work, that doesn't mean you don't have Celiac.

You could also look into Enterolab because they do stool testing and you don't have to be actively eating gluten for results. The only issue there is if you want a "Celiac" diagnosis, they cannot do that! The can tell you if you are reacting to gluten though.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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For what its worth I didn't have any symptoms of Celiac until I was pregnant, that was my trigger I guess. It took me 11 years to figure out what was wrong with me. I went gluten-free on my own too and felt far better (not 100% but 80% better maybe) after just a few days. I ended up doing an entrolab test and found out I have both of the main celiac genes. But honestly I didn't need that to go gluten-free I was feeling so much better.

But I know I have it I don't need a biopsy (I did have one for another reason but by that time I had been gluten-free for 2 years) because every single time I've goofed with gluten I get soooo sick. Unlike some people here that say they miss gluten items (bread, pizza) I don't... they make me so ill that there is no joy associated with them for me.

I do eat gluten-free pizza (Chebe) and make my own bread but very rarely I've pretty much lost a lot of desire for simple carbs. I still like rice and potatoes and I eat rice pasta from time to time but I don't crave carbs any more.

Good luck!

Susan

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I absolutely feel the same way. (I know its only been a few days) Someone brought a huge plate of cookies to work and I never gave it a second glance. I am an ablolute sweets addict but I feel so great, I could care less about what I am giving up. It's totally worth it to feel human again. I guess my biggest question was whether I would still test positive after a week of being gluten free or if that was enough to make it negative.((If I truly am celiac) sounds like you got a diagnosis after being gluten free for a while so I'll probably go ahead and try. I do really want to know for my son who does seem to have some intolerances,had a milk protein allergy from birth, bloody stools and all, and he still seems fairly lactose intolerant. For me it doesnt really matter because I feel so much better I will stay gluten free no matter what the results. My husband is already a huge fan of me on this diet, I havent complained about how bad I feel for a full four days( a record) Thanks so much for all your help! I almost forgot, can anyone tell me the exact labs to have drawn? I work at a hospital so I will just tell my doctor what to order and have it drawn at work! Thanks again!!!

Jackie

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