Severe Chronic Fatigue, Muscle Pain And Ulcers

[Uta]

Hi!

Im new here to the site which I found as I am researching this disease for my sister in law who recently was diagnosed as a sufferer. Apparently she has been diagnosed extremely late into the illness as she was also suffering from Lymes disease so all symptoms of Celiac were blamed on the other ailment. By now her intenstines are very poor indead and her doctor has informed her that it can take up to 12-18 months for her to really feel better.

What does worry me is that she is gradually feeling WORSE despite now being 100% gluten free for 2 months. She has severe muscle pain in her arms and legs, causing her to even limp at times. Her only respite is having extremely hot baths. She has mouth, throat and lung ulcers which are very painful and she has absolutely no energy at all. After being up 1 hour she needs to lie down again. After 2 months of the diet she is feeling worse than before

Is this normal? Do you feel worse before it gets better? What else can she do to help herself? She and my brother have a 2 year old child, are very happy and would love to have another kid. That is not an option right now. Is there anywhere I can go to to find help for them?

Any feedback is very much appreciated.

Many thanks

Uta

[wolfie]

Welcome Uta!!! Sorry to hear that your SIL is so sick. It does take time after being on a gluten free diet to start feeling better. Some people start feeling better right away, others can take 6 mons to 2 years. It may be possible that she is suffering from other food intolerances in addition to gluten. A lot of Celiacs can't tolerate dairy in the beginning, so if she is still consuming dairy, she may want to go off of that for a while.

I hope that she starts to feel better soon!

[trents]

You mention she has these ulcers in stomach, mouth and lungs. Has anyone checked her for yeast infections? Doctors now know that the vast majority of stomach ulcers are caused by yeast infections (H. Pylori) and mouth sores can be the result of yeast infections as well. Coupled with that, the leaky gut syndrome that is so common with Celiacs provides an entry pathway for yeast microbes into the blood stream and the rest of the body. Has she been on antibiotics lately? Yeast infections are common during and after extensive antibiotic courses as the antibiotic knocks down the immune system and allows opportunistic infections such as yeasts to take hold. I read that some celiacs whose guts aren't healing well benefit from a steriod regimine.

Steve

[lindalee]

Hi!

Im new here to the site which I found as I am researching this disease for my sister in law who recently was diagnosed as a sufferer. Apparently she has been diagnosed extremely late into the illness as she was also suffering from Lymes disease so all symptoms of Celiac were blamed on the other ailment. By now her intenstines are very poor indead and her doctor has informed her that it can take up to 12-18 months for her to really feel better.

What does worry me is that she is gradually feeling WORSE despite now being 100% gluten free for 2 months. She has severe muscle pain in her arms and legs, causing her to even limp at times. Her only respite is having extremely hot baths. She has mouth, throat and lung ulcers which are very painful and she has absolutely no energy at all. After being up 1 hour she needs to lie down again. After 2 months of the diet she is feeling worse than before

Is this normal? Do you feel worse before it gets better? What else can she do to help herself? She and my brother have a 2 year old child, are very happy and would love to have another kid. That is not an option right now. Is there anywhere I can go to to find help for them?

Any feedback is very much appreciated.

Whethanks

Uta

Went off cholesterol meds- made my muscles and body ache. Tired but working to be gluten-free. LindaLee

[nikki-uk]

Sounds alot like my husband when he was found to have celiac disease.

After starting the G.F diet,-he actually seemed to be getting worse!

Severe fatigue and muscle aches-that had him bedridden most days (he also found a hot bath helped-but he had to use a bath lift to get in and out he was so weak)

You mentioned your sil was limping-it wasn't until my hubbie went G.F that we noticed that he was very unsteady on his feet (he kind of staggered like he was drunk) and he used to limp.

I believe he was experiencing the neurological effects of celiac disease (periphial neuropathy).

I don't know if my hubbie had ulcers,but he had great difficulty in swallowing and everthing he ate or drank burnt on the way down.

You don't mention if your sil is under a G.I doc still?

My husband was still under the docs care-and a further biopsy of the bowel after being strictly G.F showed that his bowel wasn't healing,probably due to extensive damage after being undiagnosed for so long.

This prompted the docs to put him on a course of steroids for a couple of months.

The change in him was pretty fantastic.

His sore throat disappeared immediatley-the aching muscles went and for the first time in years he could actually stay awake all day!

He's now off the steroids-and still has a way to go,but is much,much better.Slowly but surely.

For some people if the damage is bad-it can actually take up to 5 years for the bowel to recover.

I suppose it took around 8 months before he actually started to feel better.Hubbies been G.F for nearly 2years now and physically is in better shape than he's been for many years.

Can your sil see the G.I that diagnosed her?

For some they feel immediatley better on a G.F diet,unfortunately for my hubbie it took a bit longer.

Hang in there!

Good Luck and I hope your Sister-in Law feels a bit better soon .