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All The Symptoms But Negative Blood Work...

~TheFanny~

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~TheFanny~ Newbie
~TheFanny~
Posted

Hello everyone, I am a 29 years old Female, and not getting any younger OR healthier. I actually started having all sorts of symptoms when I was 23. The doctor just said that I had IBS... Typical I know.

Long story short is that I was super healthy, looked great in a bikini, and now, 4 yrs later, the weight gain slowly started, I couldn't lose it, I had what I thought was bad IBS-A, and thought that was the problem. Well now I have gained a total of 92 lbs (I'm 5' 11") and all sorts of symptoms.

-diarrhea, headaches, back aches, major knee joint pain, fingers are sore, feels like my whole body aches, numb shoulders, hands and feet, stomache pain after I eat certain foods, bad brain fog, super SUPER tired all the time but can't sleep at night, anxiety and depression, stomache bloated to look 5 months pregnant... I can't think of anything else at the moment...

But a few people including my husband got worried because my health was bad and I gained so much weight and even when I dieted and exercised I didn't lose anything. So my husband was worried. I got to doing some research and kind of self diagnosed myself. So I talked to a lady I know who has celiac disease and she gave me a lot of tips and advice.

Well, since I didn't have health ins. I decided to just go off gluten and see if it helped... Well after a few days I noticed some change... I didn't have to run to the bathroom after 5-30 mins after I ate! So, once I got ins. I went to my Dr. For a checkup and told him what I had done. He said it sounds like I have at least a gluten intollefance and he wanted to try a blood test... I said I was off gluten for 3 weeks and the blood work will most likely come back negative.... He said he wanted to try anyway. So we did and I was right. Heathen asked if I wanted to do the scope and I said no.... Mainly because I don't want to start eating gluten just to get the best results... I would like to know but at the same time, I have tohavesome sort of allergy to it or I wouldnthavebeenfeeling a bit. Better already...

I guess I am wondering,should I still do the scope even though I have been off gluten for 3 weeks?

Anything helps! :)

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nvsmom Community Regular
nvsmom
Posted

As long as you don't need an "official" diagnosis, then I would just keep doing what you are doing. If you feel you would need results for something in the future, you might want to do it now; it sounds like going back on gluten after being off it makes reactions so much worse!

Best wishes to you!

IrishHeart Veteran
IrishHeart
Posted

If you want a Celiac diagnosis, you will have to go back on gluten for a few months and have a biopsy.

Just doing a "scope" is not a diagnostic tool. You need a biopsy.

Celiac is not an allergy. That is a misnomer.

It is an autoimmune disease.

You can have a wheat allergy, but that is a different mechanism.

Your symptoms are significant, so it is worth checking out.

You could also have NCGI.

squirmingitch Veteran
squirmingitch
Posted

The scope & biopsy won't be any good just like the blood tests b/c you have been gluten free. So, like IrishHeart says, you would have to go back to eating gluten.

Do you intend to have children? Do you have children? Children would be the only reason I personally would want an official dx. And the reason for that is to help get your children dx'd IF they turn up with celiac disease also. And you would want a dx for children b/c it makes a big difference in school, college & the military as far as them being protected b/c they would have an official dx.

Pac Apprentice
Pac
Posted

If you can get the scope (+biopsy) done soon, then I would do it, even on gluten-free diet. Negative results don't mean you cannot continue eating gluten-free. Intestine healing might take up to two years so after a month gluten-free you still have some chance, especially if your doctor seems to be aware that you might get false negative results due to being alreagy gluten-free.

I only got scoped 6 week or so after going gluten-free and there was still some minimal damage visible. I got diagnosed with celiac based on that and my reaction to gluten-free diet.

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