Your Recovery Story

[danielakadaniel]

I've been personally struggling with celiac disease for about a year now, it's really put my life on hold and is challenging to live with. I've been strictly gluten-free for five months and have not achieved one iota of symptom relief. Despite my TTG levels coming down close to normal, I still have severe and extremely limiting joint pain. I never realized how long recovery could take when I first received my diagnosis.

 

I was wondering if anyone could share their recovery story to give hope for those of us who still have a ways to go, that there is an end to this thing and our hard work will eventually pay off. It'd be nice to hear from people who have started to get symptom relief. The posts on this forum from people who are still struggling to recover after years of dieting are pretty depressing to read.

[cyclinglady]

I am sorry that you are struggling! First, it is really hard actually going gluten free! The learning curve is steep!

I went gluten free in April 2013. I fractured a couple of vertebrae a few months later due to undiagnosed celiac disease. It took about six months to feel any relief, but my main celiac disease symptom was anemia (fatigue and shortness of breath). I already knew about my food allergies and intolerances for years (never suspected gluten). At a year all nutrtional deficiencies were resolved. I am coming up to two years now am am feeling great!

My learning curve was less steep because my husband has been gluten free for 14 years. So, I knew he drill! Plus, I have complete support from him and my daughter. We have a gluten free house. It is just easier on me -- on all of us.

Many others on this forum have had other issues to deal with (like SIBO, etc.). I just did not have celiac disease, but I went through menopause, have Hashimto's Thyroiditis, diabetes and osteoporosis. Things have calmed down and I am thankful.

Let's face it, most folks who have been in this forum get well and move on with their lives. Those that are well and have stuck around like helping people and like the friendship.

I think you just need more time. You can get better!

[nvsmom]

Yes, hang in there.  It will get better.

 

I am pretty sure I had undiagnosed celiac disease my entire life.  My childhood had a lit of C and stomach aches, and the beginnings of joint pain (which they called growing pains). In my teens I started getting migraines and developed an autoimmune bleeding disorder.  In my 20's, hypothyroidism showed up but was undiagnosed and my arthritis began, all at once, with a fever, swelling and I suddenly moved like an 80 year old.  The joint pain would continue to come and go, becoming more frequent and of longer duration, until I usually had pan.

 

I finally figured it out in my late 30's and had them recheck my thyroid, and my labs finally abnormal enough for them to agree it was off.  I went gluten-free about two and half years ago.

 

My first two month gluten-free had a lot of improvements. Bloating was reduced and my migraines went away (after the withdrawal mother of all migraines).  I didn't get stomach aches everytime I ate and my hair started to thicken up.  I even lost about 10 lbs.

 

Then at about two or three months gluten-free, and shortly after thyroid treatment had begun, I had a really bad return of my arthritis, fatigue, and hair loss.  I was convince I must have lupus because I had a hard time accepting that it was caused by the celiac disease still.  I started to recover after a few months, and since then my episodes of sudden (autoimmune) arthritis have become much less frequent and severe. I do still have joint pain, and my hips are quite a problem, but it is a steady pain that I doubt is caused by an immune issue... Just plain old arthritis from playing too hard in my youth.  

 

My ttG IgA levels were almost normal after about 9 or 10 months gluten-free, and I have no idea what they are now.  I do still have problems that I attribute to celiac disease but Hashi's symptoms are almost the same so I doubt I'll ever feel really good.  My hair still goes through periods of thinning, I still get run down and some migraines.  I do still have some stomach issues, but they are much better than before.  I never did get completely better but I am much better than I was.  I think we celiacs have to strive for "as improved as possible" but I don't think it is unusual to not feel "better".  I was sick for almost 40 years, so I doubt I'll ever get to 100%, but I am very much improved - and those improvements continued over the first couple of years.  It does take a long long time.  You'll get there.  

[bartfull]

I felt a lot better after about three weeks, then got worse again. I developed serveral other intolerances (corn, soy, almonds, blueberries, among others).

 

It took three and a half years before I could add those foods back and feel really better. I still have to keep my potato consumption down because I get achey joints if I eat too many. Nightshades (potatoes, tomatoes, peppers and eggplant) can do that.

 

Now the only problem I have is low energy. I've been supplementing like crazy but I'm still pretty tired all the time. It may be something to do with thyroid which is fairly common among celiacs. I don't have insurance so I haven't gotten checked for that but I may have to soon.  But then again, it might just be my age.