Chronic Fatigue Disease+cd

[chronic]

I have been house bound for more than 10 years and discovered the gluten problem about a year and a half ago. Being Gluten free during this time has relieved some symptoms such as not having diarrhea and my swollen knee is now nearly perfect in size as well as experiencing less pain. However the mouth sores are terrible as is the extreme tiredness. Do any of you also have chronic fatigue syndrom and gluten problems also? Will any of the problems ever go away?

chronic

[JUDI42MIL]

Chronic- I have both plus others

I find forcing myself to exercise helps..... And I take lots of cat naps.

[tredart]

Hi. I've been Glutin Free for 5 years and have also suffered with Chronic Fatigue. It seemed to take two years before my energy slowly began to return, and now I am feeling almost "normal." I've learned to pace myself, giving myself breaks when my body says relax. I watch my stress level. Of course, it's impossible to Avoid Stress. I've learned ways to control my reaction to stress, because for me, stress is a huge trigger for fatigue. Also, moderate exercise helps. I started with short walks and then worked my way up to a couple of miles a day. I've recently started Pilates, which is hard work, but very relaxing. Oh, and watch the caffiene. It's my main addiction, but I find if I drink too much, my fatigue gets worse and I crash.

Basically, keep being glutin free and give it time. Go for short walks, even just around the block is great. Learn proper breathing, which will combat the adrenalin over load from stress. And don't give up hope. It is possible to be well.

[cdford]

My symptoms "began" in earnest 9 yrs ago with chronic fatigue and multiple rounds of EBV. Then came the fibromyalgia, hypothyroidism, and the neurological problems. Finally, the celiac disease/DH diagnosis came almost two years ago. If I had known then what I know now, I could have done so much to prevent the damage!

The CFS/FMS symptoms will gradually get better. It takes a long time to see real changes. If your damage is significant, it may never go completely away.

The good news is this: if you remain gluten-free long term, you can control the symptoms enough to get back to some semblance of normality. Until this last accidental ingestion, I was driving to my son's ball games again and managing to go shopping a few times. I was actually making it through some days without multiple naps. Even the neurological problems were mediating.

I plan to get back there. Here is what the docs have me doing:

Warm water exercise (I have a hot tub--tax deductible with a doc's note) but soaking in a regular tub then stretching your muscles is more than nothing.

A mix of B vitamins. I take them using an insulin needle twice a week. Makes a world of difference in fatigue levels.

Limit the caffeine.

Do stretching exercises regularly. I cannot do aerobics, but stretching helps.

Try to stay awake during the day if possible and sleep longer at night. "Yeah, right" is what I told them. I am trying anyway.

Hope this helps.

[YankeeDB]

My energy level didn't improve adequately until I got tested for other food allergies (via York lab online) and eliminated all dairy, yeast, soy, eggs and a few other foods.

I think celiac disease causes a "leaky gut" and while it is healing, problem chemicals are still entering the bloodstream so the immune system is still on overdrive. We all know how the flu and colds have fatigue as a symptom; I think its because of antibodies "instigating" the need for us to rest so they can do their work. Something like that.

Good luck!

[mela14]

I'm reading the responses to this post and hope that things will get better with time. I am only gluten-free about 3 months and gluten has been sneaking in there regularly.....most of the time in unsuspecting medications. Then it usually sets me back for days. Between the fibro, chronic fatigue, celiac disease, IBS it's very hard to get a good day in. I keep trying and pray that it will pay off in the end for all of us!

There have been times when things seemed like they calm down for a while....hopefully those periods of time will last longer.

I agree with stress mkaing things worse and exercise helping......now to get some balance between the two. I also agree that the celiac disease probably caused a leakiy gut and other food intolerances.

[chronic]

Thanks to all of you for the informative replies. I am not able to exeercise at this time but do try when symptoms let up a bit. Definitely will get back to hot tubbing again. Really having a downturn again with no defineable reason. By the way the Denver chapter has a glluten free shopping list that is wonderful in that it is a manageable size as easy to use. I have the a ddress if any one is interested. Only $7.

Chronic

[Maggie1956]

I also have chronic fatigue, fibromyalgia, hypothyroid. I also had a histerectomy three years ago, partly because of endometriosis.

So far, my energy level hasn't changed, but I've only been avoiding gluten for around two months. So it's early days yet.

I hope you're feeling better soon.

[cdford]

Two months, three months, you guys are just getting started. Let your bodies heal. This stuff did not do its damage in a month or two and it won't heal up that quickly.

The information about getting tested for other allergies is really good. I did not see significant changes in my neurological symptoms until I stopped all soy as well. We initially stopped almost everything and went to a bland, simple diet for a few weeks. No dairy, no eggs, little plain spices. Absolutely no pepper unless we milled it ourselves. The allergy testing can get expensive but is also well worth it. You will probably find that over time you react to less and less other than the gluten as your immune system stabilizes.

I know it sounds awful to limit yourself so, but it will cut your healing time significantly and you can get back to a more normal way of eating just sans the gluten and other major allergens. Absolutely NO GLUTEN of any kind. Be far more careful than you think you need to be. Become a fanatic. It will change your life in the long run.

A year or so from now you will not believe the difference in your life.

Go for it. It is worth it.

[mela14]

Hi Donna,

Thanks for your sincere reply. You are right ...maybe it is too soon. I just get very discouraged when these slip-ups happen and then it sets me back emotionally and physically. I am tired of feeling so poorly but what choice do we have. I will try harder to avoid gluten and become more fanatical as you say. Hopefully things will start to simmer down.

I see that you also have fibro and alot of the same ailments as me. I was recently diagnosed with osteoporosis. I had a 10% bone loss in the hips and spine in the past 2 years since my hysteretomy. I tired actonel but it destroyed my gut. I am finally on estrogen and hope that with time it will help the osteo as I was not given it for 2 years.

As for the other food intolerances...did yours get better with time? or are you sitll avoiding them? I did the York test and it confirmed the food I was reacting to so I am not having them.

If the damage was bad enough do you think doing a biopsy would help even if I've been attempting gluten-free for the past 3 months? I guess it will just serve to rule anything else out? or....maybe it will still show some damage. Not sure but I won't go back on gluten for the test.

What are your thoughts on that?

[cdford]

Those of us who are celiac disease in my family have been able to very gradually add back many of the things we reacted to initially. We did have to be overly careful for the first few months. Each of us still reacts to some little something but it is different for each person (soy for me, shellfish for my daughter, etc.)

You have to make the decision on the gluten challenge for the test. I have mixed emotions. I did it once and would not do it again. Others need to have that confirmation. Some doctors are frustratingly strong willed about it. There is an entire post going on the issue and the thoughts range dramatically. Carefully consider your situation and your doctor's advice and make a decision that you can live with comfortably.

Life will get better with time. Do what you need to do to allow your body to heal and look forward to that time.

[mela14]

Hi Donna,

I see that people do have different views on the gluten issue for the biopsy. There is no way I would have gluten for the test! I will do the biopsy anyway next month, after my move, just to rule anything else out. If the damage is still visible then it's an added bonus. If not, I will continue to eat gluten-free. Yesterday was a better day with my gut. It is starting to heal from the gluten slip-ups and I've started to become much more aware and "fanatical" of everything I eat....especially medication which seems to have been the culprit this last time.

I am also not eating dairy, eggs, soy & peanuts. Eating out is a challenge and you never really know how the food is prepared .... even when I order plain foods. Often times they say that is is "fresh" and winds up being loaded wth presevatives..that's the killer. But I am starting to get better with that. Recently while out with my sister and family for lunch, to keep it safe I ordered a sald with olive oil on the side. By the time I got home I was famished! I guess it was better than eating anything bad for me.

So, I guess I just have to give it more time and continue along this path. Thanks for your help. Take care,