Do I Have Celiac Disease?

[kabons]

This is the first time I’ve ever written all of this out, which may end up being therapeutic for me.

 

I’m 20 years old. When I started university two and a half years ago I started to really struggle with stomach pain as well as extreme fatigue (I could sleep all day and not feel rested). I think I mostly ignored these symptoms until the end of my second year when I started to lose a lot of weight unintentionally and rapidly. I lost 20 pounds in four months and was starting to also notice I had less of an appetite. The tiredness was still an issue, I could never make it through a day without having at least one nap. I also started to struggle with frequent headaches and occasional numbness in my toes. It was around this time that my periods started to become pretty severely painful .

 

Five months ago (the beginning of this school year) I started to really struggle with a multitude of symptoms. Between the severe pain, nausea, fatigue etc. associated with my period and the digestive issues, headaches, toe numbness, chills, canker sores, loss of appetite, weight loss, and pelvic pain I was experiencing off my period- I was a constant mess. I had lost about 40 pounds at this point and was sick and tired of being sick and tired. So I started seeing a naturopath. Four months ago she started treating me at first for what she strongly suspected was endometriosis. She got me on a lot of supplements and had me start an anti-inflammatory diet. Among the things I needed to cut out was gluten.

 

It has been stressful to be a student trying to live on such a strict (and expensive) diet. But initially I saw a lot of my symptoms start to go away. About a week after I started the diet, though, I started to get intense joint pain in my legs. I asked my naturopath about it and she said it could be my body detoxing from foods that I was actually intolerant to. Over Christmas (three months after I started the diet), I tried really hard to be good but slipped a few times on the diet (ate some dairy and some wheat crackers). I found my body reacting a lot and the joint pain started again, as well as pounding headaches and stomach aches. I had diarrhea for a few days and the joint pain has lasted two whole weeks! I was encouraged that I thought I found out that gluten was the culprit for at least some of my symptoms, but now I just don’t know. Why is the joint pain so persistent even though I’ve been so good with the diet!? Did that one slip up do this?

 

Man, suffering with endo is enough without these constant, unexplainable digestive issues.  To be honest, it’s becoming quite depressing. I’ve lost so much weight I barely recognize myself, I feel sick virtually all the time, I deal with so much pain from my periods and now I have constant knee pain off my periods! It’s really just too much sometimes. I don’t like to complain, but it seems like every day I’m suffering with a new symptom. It’s not fun for me and it’s not fun for the people who love and care about me. Sometimes I just feel like a huge burden.

 

Could gluten still be the culprit? What steps should I take next? 

[kareng]

I'm just curious, why not see a doctor? Get tested for Celiac and other medical causes? see an OB/ GYN and see if you really have endometriosis and get help for that?

I guess my recommendation is to see an MD or two. I worry there is something wrong that you could get fixed.

[cyclinglady]

Ditto what Karen wrote.

[GFinDC]

I agree with seeing a real doctor.  But, since you have been eating gluten-free, the celiac testing may not work.  The celiac blood antibody tests are usually the first step in celiac diagnosis.  But if you start eating gluten-free, the antibodies levels in the blood start dropping and the tests won't show an accurate result.  You could go back on a gluten full diet and get tested for celiac after 3 months.  In the meantime your doctor can rule out other possible issues though and that's a good thing to do.

[nvsmom]

The others gave good advice, getting tested for celiac disease, if you can hack the needed 2-3 month gluten challenge, is a good idea. As a celiac, you would need to be 100% gluten-free (checking vitamins, lotions, sauces, spices, not sharing a toaster, etc) and many people aren't that careful unless they know they need to be.  Getting tested could be helpful.

 

The biopsy only require that you eat gluten for 2-4 weeks, and might be more doable than the 2-3 months needed for blood tests.

 

Joint pain was one of my most annoying symptoms before I was diagnosed. Unfortunately, arthritic pain, cognitive and nerve problems tend to take the longest to resolve - many months to a few years.    Like you, my joint problems became worse on the gluten-free diet before they got better. When I had been gluten-free for a couple of months it became quite bad to the point where buttons were difficult to handle and I could barely hold a grocery bag. It eventually improved and by 9 months it was getting better.  Now, at over 2 years gluten-free, my arthritic problems are much less frequent and severe.

 

If you do choose to stay (strictly) gluten-free without testing, my guess is that you'll have to give the diet more time before you see improvements. Sadly the gluten-free diet is not the quick fix that it is sometimes portrayed to be.

 

Best wishes.

[MitziG]

Alot of celiacs will react to dairy in the same way as gluten. The proteins look similar and our immune systems often think they are the same. Joint and body aches are really common with both.

[MitziG]

Alot of celiacs will react to dairy in the same way as gluten. The proteins look similar and our immune systems often think they are the same. Joint and body aches are really common with both.

[nvsmom]

That's partially true. Up to half of celiacs seem to have lactose intolerance because their damage intestinal villi can not produce the lactase needed to digest lactose, but that changes for some as the heal over the next few months.  A large minority of celiacs are affected by the milk protein, casein which causes inflammation although there is not evidence that it is the same autoimmune reaction because the "proteins look similar".  There is an inflammatory response, which can cause joint pain, but it is not the same autoimmune reaction.... As I understand it anyways.

 

This article discusses it somewhat: Open Original Shared Link