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book-worm

Suspected Celiac, And Feeling Very Lost And Frustrated!

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Hi all.

I’m new hear, and very new to celiac and anything to do with it, so please forgive the long post.

I’m a 24 year old Uni student, I’ve never had any digestive problems that I can think of, unless you count never really putting on weight. About 8 months ago I had a really bad flue, took me weeks to get over it. Ever since then I’ve had diarrhea, nausea, stomach cramps and just generally feeling unwell.

The last 2 or 3 months I’ve started to get bone and muscle pain, headaches and just recently mouth ulcers. All these symptoms seem to get better and worse, but never go entirely. I’ve had a series of tests including ultrasound, CT scan, a range of blood tests including the blood test for celiac, and everything came back negative.

Haven’t had a biopsy done, no one thinks it’s necessary.

My doctor told me it was probably IBS, there was nothing more he could do and just to except it and learn to live with it.

I disagreed with him and went to see a new doctor about 2 months ago, and she said because I didn’t seem to have the usual IBS food trigger’s, (spicy food, coffee ect) I should try cutting out gluten even though the blood test was negative, and see what happened.

She said it could take a while to know if the gluten-free diet was working, I’ve been gluten free for about 5 weeks now, and I think it’s making a difference. but I can’t be shore, I’m still having good and bad days.

At this point I’m just slightly lost, confused and frustrated, I don't no weather to stick with it or if I'm waisting my time.

my doctor doesn’t seem to have answers, and none of my family have anything like this, so they all agree with the first doctor “it’s IBS, just learn to live with it” . Easy for them to say!

So, after that saga, (Smile.

What do you guys think, Does this sound like celiac? And should I be noticing improvement by now? Or is five weeks not long enough to know if the gluten-free diet will work.

Basic questions I know, but no one seems to be able to answer them, and numerous searches on Google has just left me even more confused!

Hi! you answered your own question! you dont want to waste your time ans probably money, and social life eating expensive stuff.. that no restaurant cooks and no one in your fam understands. so get the gene test, get the biopsy... call GI drs until you find one that will listen and do it... if Celiac is not found, then move on from there.. but at least exhaust the diagnosis All the rest of the drs will order andtidepressants, tell you its anxiety, or order a whole lotta other drugs and will spend years wondering ... so get it done... You have to take care of yourself...You know your own body.. Prayin for your strength and wisdom...

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If you have been gluten free for 5 weeks, the biopsy would not be a reliable test. You could get the Enterolabs test done, even after being off gluten for a while.

If you think the gluten-free diet is starting to help, that means something right? It is not an instant cure all though, It takes time for your body to heal. It also takes to time to learn to avoid all the hidden gluten in foods, drinks, medicines, vitamins etc.

A good way to start is to not eat any processed, package foods. Make all your own foods from scratch at home and use only single ingredient spices. Don't give up just because you didn't get better right away. It is not unusual for people to need 6 months or more to get better. You may also discover additional food intolerances as you go. Soy, nightshades, dairy are all common for intolerances us.

You can have gluten intolerance without having celiac disease. Gluten intolerance may not show up on tests, but it should still respond to the gluten-free diet.

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Hi book-worm. Well, what you described sounds almost exactly like what I have been going through as well. I had the same symptoms after some food poisoning a few months ago, and they just wouldn't go away. I too had a CT scan, ultrasound, even a colonoscopy. I just had the celiac blood test done last week which came back as negative, but I had also been on the diet for almost 6 weeks at the time so who knows.

The only difference for me is that the diet has made a huge improvement on my health. Huge improvement. I still don't feel completely "normal" but the difference is amazing. When I first started on it though I was still eating dairy and still felt sick more. Since taking dairy out(which is almost harder than the gluten for me)I have felt so much better too. Just try different things as GfinDC has mentioned to see if other things could be the problem. Good luck and keep us posted on how it goes.

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Thanks guys,

I had been feeling fairly reasonable for the last three weeks, but last night and today feel shocking! Shaky, Nausea and diarrhea, no headache and very little bone and muscle pain though, so that

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