New To The Forum My Story

[truman]

Hi I have not been formally diagnosed with celiac disease but I am almost positive I have it or at the very least gluten sensetivity.  It all started when I was in public school when a typical day consisted of gassing up all day to the point of buckling over stomach pains then when I got home from school sitting on the toilet with the big D until I got some relief then laying on my bed stomach down to try to get rid of the rest of the gas every visit to the doctor I was told I must have an alergy to milk but removing milk never helped anything.   I always had fight or flight panic attacks where I had to get outside before I could calm down.  In my teens I had what seemed like heart palpatations and asthma type symptoms.  I was very active in school ran track and all that stuff.  As an adult my stomach has not been to bad in the gas department but I have extreme fatigue as well as achy joints and hips that get stiff and painful despite mri saying nothing wrong,  I did have a positive titter for RA many years ago but it has not shown up again in any other blood test, again still painful joints no visible swelling,  I also get frequent headaches as well some turn into migrains where I have to go to a dark quiet room to get rid of.  I pretty much have the symtoms others describe on the forum like brain fog as well as some others I can't think of right now.  I have been chasing my tail long enough my doctor doesn't seem to be up to date on testing for celiac as she thinks the only true measure is a biopsy but says I should just stop eating gluten if it makes me feel better.  I found out I feel better off gluten by mistake as I went on a very low carb diet that inadvertantly removed gluten as well, I was on this diet for three months and felt fantastic.  when I stopped the diet I went back to my old eating habits and felt horrible again so I started it again yoyoing on and off for a while which proved to me that it must be gluten that is making me feel sick.  Sorry for going on and on but I needed to talk about this.  I have been what I think is gluten free for three weeks now seem to be sleeping better and brain fog has improved but joint pain seems to still be here I wonder how long until I will get relief from that?  By the way I am 39 years old and live in Canada don't know if that is relevant or not.

 

thank you

 

Rob

[1desperateladysaved]

I am glad to know that you are on your way to better health.  You have had it rough for a very long time.  I hope you will soon be surprised what symptoms go away with time and without gluten.

 

I need to recount my undeniable celiac years with the article about tooth enamel this morning.  I went from age 17-48 with symptoms of celiac.  At 43 I was dying, but an awesome supplement program revived me.  In the summer of 2010 I realized that in spite of the supplements every tissue in my body felt irritated and I started to really drag.  My chiropractor asked me a couple of times if I still ate gluten.  I looked it up, decided that would answer a few whys if I had that, and tried gluten free.  I have had a rocky trip with many twists and turns.  Now, I have a clear mind, and some energy most of the time. It is worth the struggle.  Keep on,

 

D

[truman]

I really hope gluten free takes the joint pain away that is my worst issue right now and thank you for the support

[nvsmom]

Welcome to the board.

 

Joint pain is usually one of the last symptoms to go it seems; that and issues related to your neurological system appear slow to heal. I used to get periods of joint pain where the pain flares and the joint gets weak (difficult to carry a bag or use scissors) but then it would subside to an achy stiffness. That happened for years to me to the point where I asked for a referral to a rheumatologist. I live in Alberta, so getting into a rheumy took close to a year, and by time I got in to see them I had been gluten-free for close to a year and my joint pain was pretty much gone. The rheumy figured it was celiac and since my pain keeps fading away, I think she was right.

 

Some people's pain goes away within a month or so but unfortunately, they seem to be the minority. It usually takes many months up to a few years.  

 

I'm about 14 months gluten-free now and most of my pain is gone and my headaches are greatly reduced. My fatigue is lessened a great deal too, but part of that was finally treating my thyroid adequately (hypothyroidism is quite common amoung celiacs).

 

If you plan on getting tested, you will need to be eating gluten in order for the tests to be accurate. Serum antibody levels can remain high for some time in some people once they have gone gluten-free (mine are still abnormal after a year) but most people's antibody levels start falling once they are gluten-free. If you plan to get tested you should do it soon and resume eating gluten immediately. The longer you are gluten-free, the longer of a gluten trial will be required for adequate testing. for those already gluten-free, they must resume eating gluten (about 2 slices of bread per day) for two months... Ouch!

 

In Alberta, they only offer the tTG IgA, EMA IgA and Immunoglobulin A (a control test). Other provinces offer the DGP IgA and IgG tests, but my doctor hadn't even heard of it yet. The tTG IgG test is a good one to try to get as well.

 

Good luck with the gluten-free diet or with testing. Hope you feel well soon.

 

Editted to add that you might want to get your nutrient levels checked. Low mineral and nutrien levels can contribute to joint pain. Celiacs are often low in: Ca, K, Fe, B's, D, A, ferritin, zinc and sometimes Mg.