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It Should Go Away


Eric096

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Eric096 Newbie

I have been diagnosed celiac for 4 months now and my bones always hurt shouldn't they be getting better now?

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eatmeat4good Enthusiast

Have you had your vitamin levels checked?

Are you supplementing calcium and vitamin D?

Other vitamin deficiencies can contribute to the bone pain too.

And cross contamination can too.

even if you are doing everything right it can still take a long time to heal.

but I will say that when I started supplementing vitamins, I felt better in a couple of months.

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Eric096 Newbie

I started eating more vitamins and it helped a bit but im still having bone pain.

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IrishHeart Veteran

Sorry, hon, but everyone heals at their own pace. My excruciating bone/joint/muscle pain is still with me---only it is LESS intense.

I am gluten-free over a year.

If you are younger, it may take you less time.

Some people report 10 months for it to go away, some 3 years.

There is no set-in-stone time frame that I know of --believe me, I have looked.

Hang in there. Your body is healing and in time, you will feel better and better. :)

Eat well, take your vitamins and probiotics and try not to stress about it.

IH

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BeckyGoNecky Newbie

Everyone is different. For my cousin it took 3 months, For my other cousin it took almost 2 years.

But make sure you keep track of how you feel and your symptoms because it can be more severe than you think. My symptoms have never gone away and recently they have gotten worse. I was diagnosed with celiac disease 3 years ago so it was confusing. I am very careful with my gluten free food. I ended up in the hospital for 2 months and the doctors were all confused. so they sent me to a larger hospital that knows about celiac disease. They tested me for other auto immune diseases that MIMIC celiac disease. There are a few other disease out there that have the same exact symptoms as celiac disease but dont heal with just eating gluten free, it takes actual medication. I actually was diagnosed with Refractory Celiac Disease where my body is not responding to the gluten free diet. I hope this helps!! Good luck!!

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    • trents
      Keep in mind, Hannah, that of you are on a gluten free diet and want to get tested for celiac disease, any testing would be invalid until you were back on generous amounts of gluten for weeks/months.
    • Hannah2907
      Hi, the test I did was an online one with list of positive feedback. I initially did the test as I thought I may be lactose intolerant but with the results showing high sensitivity to gluten as well as dairy I thought I’d just ask for foods that may benefit me and my symptoms as well as follow these results up with a blood test with my doctors. It doesn’t specify coeliac, it just showed a very high sensitivity to gluten
    • Scott Adams
      Also, I've not heard of any legitimate allergy tests which use hair samples, certainly there is no test for celiac disease which uses a hair sample. Are you sure your tests are legitimate?
    • trents
      Welcome to the forum community, @Hannah2907! I know this is going to be all very confusing, Hannah, but the first thing to realize is that celiac disease is not an allergy and it cannot be diagnosed by allergy testing. It is an autoimmune disorder characterized by an inflammatory reaction to the ingestion of the protein "gluten" which is found in wheat, barley and rye.  Autoimmune disorders speak to diseases where the body's immunes system attacks the body's own cells. In the case of celiac disease, when food containing gluten is ingested, it triggers an attack in the villous lining of the small bowel. This causes inflammation in the villous lining and produces characteristic antibodies that can be detected in the blood through certain lab tests. This inflammation often (but not always) causes discomfort and other GI distress and always wears down the villous lining. This "wearing down" of the villous lining over time causes increasing inefficiency of nutrient absorption and can cause serious vitamin and mineral deficiency related medical problems. The villous lining of the small bowel is essentially where all the nutrition in our food is absorbed. The damage done to the villous lining can also be detected through an upper GI scoping ("endoscopy") with a biopsy. The endoscopy/biopsy is typically used as confirmation when the antibody blood testing is positive for celiac disease. Celiac disease may also be referred to as "gluten intolerance".  There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity). NCGS is also known simply as "gluten sensitivity" but, unfortunately, many people use the terms "gluten intolerance" "gluten sensitivity" interchangeably. NCGS is 10x more common than celiac disease and shares many of the same symptoms with celiac disease. The main difference is that celiac disease damages the villous lining of the small bowel whereas NCGS does not. There is no test for NCGS. Celiac disease must first be ruled out. Both require complete abstinence from gluten. Some experts believe that NCGS can be a precursor to celiac disease. The immune system pathway of NCGS is not well understood though, like celiac disease, it is not an allergy. My point in all of this is to help you understand that the testing you have undergone for allergies is not effective for diagnosing gluten disorders. You need to get blood antibody testing done that is specifically designed to detect celiac disease. Many people with gluten disorders also must avoid dairy and sometimes oats, even gluten-free oats. 
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