Still Sick

[KProc]

Hi All,

I am new to the boards, even though I've been reading since I got diagnosed in January.

My major symptoms my whole life have always been fatigue, migraines, muscle and joint pain, and generally feeling awful - I never had any GI symptoms to speak of until a month before I was diagnosed and those were from colitis, not directly because of Celiac.

I went gluten-free 6 months ago and my daily diarrhea stopped, but none of my other symptoms have really improved...especially my nerve pain and headaches which my doctors really believe are associated with the Celiac.

My dietician, doctors and I have ruled out the possibility that I am getting gluten in my diet. I barely go out to eat...so the occassional cross-contamination is possible, but it's really unlikely that it is a consistent issue.

All of my bloodwork is totally normal, except that my Celiac serologies are still elevated. My doctor is not concerned about it though since I've only been gluten-free for 6 months and it will take awhile for them to come down.

I'm sick and tired of reading and hearing about how everyone feels so much better in a few days, a few weeks, 3 months. Is there anyone out there who has gone or is going through a much longer recovery process. I feel awful, I'm missing work and I really can't keep a normal schedule since I need to sleep about 12 hours a day just to feel OK.

I'd love to hear if anyone has had a similar experience and how they've dealt with it.

THANKS!

-Kelly

[fedora]

hi, I had immediate results in some areas-skin, moods, digestion, BUT

I still have muscle and joint problems too. I was diagnosed with a different problem for that, but I am not sure.

I am doing what I can to help my nerves, muscles, and joints recover.

I take a calcium, magnesium, vit D supplement.

I take a iron and vit Bs supplement.

I take glucosamine(for joints). I think it is helping.

I have a bunch of therapy I am trying to do: deep tissue massage, yoga, physical therapy, and chiropractor care.

I get headaches from allergies and my TMJ, not gluten.

I am still so tired and am hoping the iron will eventually help.

It takes time. Good luck.

[Lisa]

It took me a good six months to get a handle on the diet and to see a marked improvement. The digestive response is the first to show improvement, but the neurological ones can take up to a few years to totally improve, in my case due to malabsorption.

It does take some time for your body to recover, just as it took some time to get to your diagnosis.

Be patient and diligent.

[lizard00]

Did you doctor do any tests to see if you were anemic, or deficient in certain vitamins or minerals? In the beginning, I still had a lack of energy and started taking B12 and magnesium. They really helped a great deal. I had severe headaches, too. Mine did partially go away with the gluten-free diet, but I also have sinus issues that cause headaches.

Anyway, here's some research I found about magnesium and headaches... maybe it will help.

Open Original Shared Link

Open Original Shared Link

[KProc]

All of my bloodwork is fine. No anemia. B vitamins are fine. I've definitely still been taking a multivitamin and calcium everyday to keep that up.

It's good to hear other people talk about how long it can really take to start to feel better.

I guess you can't be sick for 23 years and expect to be better in a few months.

I think massage and yoga would be good to add to my "treatment" plan.

Thanks for the advice and encouragement!

PS my dad just mentioned the magnesium thing this weekend. Apparently that's what's up with my Aunt who gets migraines. I'm pretty sure my doc tested my levels about a week ago, but I didn't see the actual results so who knows!

[RiceGuy]

My advice would be to ignore nutrient level blood tests. There are numerous threads on the board about how supplements help a great deal even though the tests suggest those levels are "normal".

I too have had a long, slow recovery. It took six months for me to see ANY change whatsoever, and that's actually when the roller coaster of health began! It's been over 4 years now, and still I struggle with malabsorption. As you yourself said, you cannot expect a quick recovery after many years of suffering. I figure my digestive system has been severely damaged. Perhaps a relatively quick recovery can happen when the correct diagnosis is obtained in a short period of time, before a lot of damaged has occurred.

What I have found to be most helpful for fatigue, muscle/nerve weakness and pain, nutrient absorption, sleepiness, mood, and too many more symptoms to list, is magnesium, and a sublingual methylcobalamin (vitamin B12) supplement. These are also known to help with headaches. I also take glucosamine for TMJ, which has helped tremendously, and it seems to be helping other joints too. Many people find a B-complex to be helpful too. Coconut oil is also good for many things including energy, and the skin, hair, and nails.

Another thing I've found to help with absorption is to use a blender for as many foods as I can. The smaller the pieces of food are, the better the digestive system can break it down and derive the nutrients. I also found that my body didn't handle certain kinds of nutrients very well, such as proteins. So limiting them awhile really helped.

If you are consuming dairy, you might find it helpful to avoid that for now, and try adding it back once you are felling better.

Hope you get all the answers you need!

[Joon]

Did you doctor do any tests to see if you were anemic, or deficient in certain vitamins or minerals? In the beginning, I still had a lack of energy and started taking B12 and magnesium. They really helped a great deal. I had severe headaches, too. Mine did partially go away with the gluten-free diet, but I also have sinus issues that cause headaches.

Anyway, here's some research I found about magnesium and headaches... maybe it will help.

Open Original Shared Link

Open Original Shared Link

I am new to my GFD, but I do know about the magnesium and the migraines. I've been a chronic common migraine sufferer for four years and I know that magnesium is a huge part of it for more than 85% of common & classical migraine sufferers.

I'd recommend a cal-mag supplement (Jamieson is the best), but you must talk to your doctor because this can stress your heart. It also stresses your digestive system if you choose a poorly constructed brand. You must take calcium at the same time in a 2:1 ratio.

Chocolate milk or hot chocolate when you're starting to feel yucky can really help as well. (Really choocolately... I keep chocolate syrup on hand, or buy Natura chocolate soy drink.)

Hope this helps!

[home-based-mom]

You must take calcium at the same time in a 2:1 ratio.

Two parts calcium to one part magnesium?

Or two parts magnesium to one part calcium?

[ShayFL]

I am just shy of the 3 month mark gluten-free. I have not gotten a migraine since quitting the gluten. And my BM's are down from 5/6 to 2/3 a day. But I still have neuropathy and vertigo/ataxia symptoms. I accept that I have to be patient. It isnt easy. But I accept it.

I am also working on my Ferritin (Iron Stores) to get them up to snuff and my Vitamin D (which was deficient too). Did they check your Ferritin and Vitamin D levels?

Cal/Mag can also be taken 1:1 ratio just fine.