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Still in pain after a year?

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Hello everyone I'm new to this site, I'm 21 years old female, and was diagnosed with celaic diease last year 2016. 


I had an endoscopy, this was a relief to me since I always had stomach pain everyday and been throwing up so much not knowing the reason.

Im strict on this gluten free diet started preparing my meals at home. If I do eat out I only eat at gluten free restaurants in my area. Which is rare.

I don't know what to do I have this lower stomach ache and back pain all the time I get nauseous everyday I wake up.  I've seen about 7 doctors so far and none of them know what to do.

im starting to get headaches and breaking out all over my arms. I feel this pressure in my stomach when I lay down. 

I have body aches and shivers. I'm scared this is something else separate from celaic diease.

Doctors want to put me on anti depressants but I think this is something else. Does depression make you feel this terrible?

i don't feel like eating anymore my doctor told me I lost a lot weight since last year but she's not concerned because it wasn't all at once.


im dropping a lot of pounds recently I just don't know what to do...does anyone else have similar pain?


thank you for reading I know this is a lot...

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Welcome. Have they rerun your celiac panel or done a repeat endo to see if you might have some gluten sneaking in somewhere? Are you eating oats or cereals like Cheerios, Lucky Charms etc? Many celiacs will react to oats the same as they do with the gluten in wheat.  Do you have a significant other who eats gluten? If so they need to brush their teeth before kissing as you can get glutened from kisses if they don't.

You say your arms are breaking out. Is this an intensely itchy rash? If so it might be the skin form of celiac, DH. Those of us with DH often find we are more sensitive than folks who don't have it.

Have you eliminated gluten in your toiletries like shapoos, conditioners, lotion and make-up (if you use)?

Some of us have other intolerances. For example soy protein or flour gives me intense stomach pain. If you do consume stuff with soy you may want to drop the items for a bit and then add back in when you feel better. The same applies to dairy products.

If you haven't already do read the Newbie 101 thread at the top of the coping section as it has a lot of good info.

I hope you can get to the bottom of what is causing you so much misery soon.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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So sorry you aren't feeling well.

Ravenwoodglass gave a really great list of things to check.

I just thought I'd add, in case it is at all reassuring, that depending on the person, nerve damage and skin symptoms can take longer than a year to heal; if the rashes are DH, it can take up to two years on a gluten free diet for your body to clear it - 



The treatment for DH is a lifelong gluten-free diet. This means you will have to remove all sources of gluten, which is found in wheat, barley and rye, from your diet. Some people may also be sensitive to oats.

The time it takes for the skin rash to improve varies between people. Skin symptoms tend to take longer to recover compared to the typical gut symptoms associated with coeliac disease. It can take an average of two years for a gluten-free diet to take full effect, and in some cases longer.

I hope you will find a way to feel better soon.

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