Just Back To gluten-free Living

[nix's gfgf]

Hi everyone.

This is my first time here. I am looking for some help. First, forgive if I start rambling. I'm just starting to get into living my gluten-free lifestyle again and could really use some help in a few areas. I was first diagnosed as having celiac disease when I was an infant. I was on a pretty strict diet all the way up through my pre-teens. It is still a mystery to me but I think this disease went into a dormancy period because all through my teens I was able to eat gluten everyday and not have any of my classic symptoms. No bloating, cramps, gas, etc. As I'm sure most of you know, no need to go into details there. I never felt better, thought less and less of the old way I did things, 21 came and with it a lot of beer drinking. The first few years were fine and then worst pain ever started after only having 1 beer. Sometimes I could get away with drinking all night. Sometimes anything seemed to set these symptoms in motion. I also began to have severe nerve pain on my lower left side of my back. I went to plenty of doctors, had x-rays, ultrasounds, you name it. No one could figure out why my back was freaking out. The pain would keep me up all night with spasms and vomiting. The only thing to give me comfort was a hot shower. I couldn't keep medication down and loss of appetite was so great that I would go for days at a time without eating anything. The closest I ever got to a diagnosis was Shingles. I thought hey I've been so stressed over all of this that I probably did that to myself! Beer was by far the biggest trigger to my misery. I stopped drinking it completely and I have improved somewhat. I was still getting mild stomach aches, gas but only periodically. For the last few weeks I have been eating less and less of anything gluten and I think I can tell a difference. I screwed up a few days ago and had a small amount of a flour tortilla and I was sick for two days. That's when I came here in hope for some advice. Any experience would be helpful. I'm pushing 30 and need some help getting back into the swing of things.

Should I go to doctor to get blood work done? From what I have read you need to have ingested wheat/gluten in order to get accurate results. Is there anything they can tell if I've been of a gluten-free diet for a week? Best way of finding one in the missoula MT area?

Has anyone experienced nerve pain like I described? Could the celiac disease and this be related?

Has anyone come across anything that eases these symptoms?

Please, anything would help. I look forward to getting to know this site and everyone more. I'm going to crunch on a rice cake. Have a good night everyone. Thank you so much

[YoloGx]

My understanding is that once you have celiac you have it for life. Like for you it can go underground and then resurface, however damage is still being done internally during those underground years.

I too was diagosed as an infant. Unlike you however I was put back onto gluten at age four. They thought I literally grew out of it since a big symptom for me was that I had stopped growing. However it continued to undermine my general health. Unfortunately no one told me about what had been diagnosed for me as an infant until last year. I am now approaching 60. So you see, you are luckier than I.

Meanwhile however I too got into drinking beer and wine as a young adult. I even made the stuff. However it soon hurt my kidneys which I was starting to lose. Fortunately I figured out diet helped immeasurably. Eventually I figured out I shouldn't eat wheat, rye, oats or barley, though I thought it was just an allergy. A severe one, but still I ate oats and barley once in a great while and sometimes had a giant oatmeal cookie as a weekly treat.

Again my health went down and I developed a severe fungal infection and was generally out of it. Over the years I have fought my way back to health. Before I figured it all out (with little help from Kaiser or Naturopaths by the way) and found out what "failure to thrive" as an infant meant, I started noticing even more severe nerve pain. I had tests done and discovered the myelin sheath on my nerves was down to 50%! By taking co-enzyme B vitamins I have been able to turn that around a great deal. Recently I also started to do this Aryuvedic oil flush which seems to be helping my nerves. I am finally able to sleep a lot better without necessarily having to do my yoga. Yoga is still a good idea, however in the past I was twitching all night unable to sleep. By going off all the trace gluten a year ago in November I noticed that the nerve pain I was having in my neck and elbows went away. Plus my old low back injury only flares up if my sacrum goes out, whereas before it was a common event. I have discovered that celiac often creates

[ravenwoodglass]

If you were diagnosed with celiac as a child you are still celiac. It used to be thought that celiac was just a childs disease and that they outgrew it. We now know that is not the case. Doctors call the period you went through in your teens the 'honeymoon' period. You were not symptomatic but it was still doing damage. You asked in another post if you should get blood tested, if memory serves me correctly, when I answered I did not realize you had been diagnosed previously. In your case I would just go back to the diet as you were already diagnosed.

[nix's gfgf]

Thanks for the great tips bea! It's so comforting to know that there are others out there that know what's going on. I'm going to go to the vitamin store armed with new knowledge. Thanks so much!

Traci

My understanding is that once you have celiac you have it for life. Like for you it can go underground and then resurface, however damage is still being done internally during those underground years.

I too was diagosed as an infant. Unlike you however I was put back onto gluten at age four. They thought I literally grew out of it since a big symptom for me was that I had stopped growing. However it continued to undermine my general health. Unfortunately no one told me about what had been diagnosed for me as an infant until last year. I am now approaching 60. So you see, you are luckier than I.

Meanwhile however I too got into drinking beer and wine as a young adult. I even made the stuff. However it soon hurt my kidneys which I was starting to lose. Fortunately I figured out diet helped immeasurably. Eventually I figured out I shouldn't eat wheat, rye, oats or barley, though I thought it was just an allergy. A severe one, but still I ate oats and barley once in a great while and sometimes had a giant oatmeal cookie as a weekly treat.

Again my health went down and I developed a severe fungal infection and was generally out of it. Over the years I have fought my way back to health. Before I figured it all out (with little help from Kaiser or Naturopaths by the way) and found out what "failure to thrive" as an infant meant, I started noticing even more severe nerve pain. I had tests done and discovered the myelin sheath on my nerves was down to 50%! By taking co-enzyme B vitamins I have been able to turn that around a great deal. Recently I also started to do this Aryuvedic oil flush which seems to be helping my nerves. I am finally able to sleep a lot better without necessarily having to do my yoga. Yoga is still a good idea, however in the past I was twitching all night unable to sleep. By going off all the trace gluten a year ago in November I noticed that the nerve pain I was having in my neck and elbows went away. Plus my old low back injury only flares up if my sacrum goes out, whereas before it was a common event. I have discovered that celiac often creates

[YoloGx]

Hi Traci,

You are quite welcome! I like to help others when I can since I wish I hadn't had to learn the hard way. However I am very greatful for this site--this last year I have learned a lot just looking at celiac.com as well as several books and other things online.

Meanwhile, just remember to look up what each vitamin does and how much is generally recommended. With celiac you may need a bit more than the general populace but still its best not to overdo it either. You will need more at first and less later on more than likely.

If you take things like slippery elm and marshmallow root for instance on a regular basis it will go a long way towards healing your gut and thus making you better able to absorb more nutrients.

I have also found taking apple cider vinegar with my minerals really helps me digest and absorb them better.

Some plant enzymes wouldn't go to waste either plus some acidophilus. If you can't afford it, then just eat plain, unsweetened, organic, nonfat yogurt frequently. You can sweeten it yourself with say stevia (to avoid sugar) and say gluten-free vanilla or some such...

Bea