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Curt

How Long Before Symptom Free?

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HI,

Just wondering how long it took for everyone to feel better? I have been on a gluten, dairy and egg free diet now for 10 months and not much better. Thanks.

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"I have been on a gluten, dairy and egg free diet now for 10 months and not much better. "

IMHO Ten months is long enough to see some improvement from the gluten free diet. Have you looked into other food sensitivities ... Like soy and corn ? Shellfish ? Nuts ? MSG?

Is it your digestive tract that is still bothering you ? Have you tried probiotics ?

Some issues take longer. After 16 months, I am still tired most of the time and still have trouble with brain fog. But I'm still getting glutenned by mistake too.

What has gotten better for you ? Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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"I have been on a gluten, dairy and egg free diet now for 10 months and not much better. "

IMHO Ten months is long enough to see some improvement from the gluten free diet. Have you looked into other food sensitivities ... Like soy and corn ? Shellfish ? Nuts ? MSG?

Is it your digestive tract that is still bothering you ? Have you tried probiotics ?

Some issues take longer. After 16 months, I am still tired most of the time and still have trouble with brain fog. But I'm still getting glutenned by mistake too.

What has gotten better for you ? Marcia

I've tried so many things it would take pages to list them all. I have good periods but more bad than good though. I was just wondering if people out there had to go a long time before they finally got better mostly with digestive problems. It's one thing to follow this diet if you feel good but I'm ready to give it a few more months and then the heck with it if it doesn't make any difference anyway. But if it takes well over a year than I'll hang in there.

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Just a thought ...

You can always take a gluten challenge and see how you do. I would only eat a little though ...

Some people have problems with foods that are labelled gluten free too. Bob's and Amy's are known to cause problems. I have a thread I am working on about completely gluten free companies you can check out ...

Did you go on the elimination diet ? The trick to that diet is to stay with foods you know are safe before moving on to new foods. You digestive tract needs to heal and can't if it's torn up all the time ... You many need digestive enzymes and probiotics here too ... I ate papaya, mangos, and pineapple and drank Helios plain kefir ...

You can expect new foods to be a problem so eat only 1 tablespoon the first time and progress from there. Back off that food if it is just too much ... It took me several months and about 10 attempts to get tomatoes, garlic and citrus back into my diet.

I'm working on adding leafy greens back in now. I think I introduced them too quickly ... and I knew better :P

Hope this helps ... marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Curt...just a thought...why don't you post here a couple of day's eating so we can see what sorts of things you eat. That might provide some clues...


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Thanks for the replies. I've had problems for over 10 years and have done the elimination diets and allergy testing, etc. I know what I am eating now is okay and I eat EXACTLY the same foods every day. I did this to eliminate variables when I went on the gluten free diet. I can go for a couple of weeks and do fine and then it's bad again for weeks. So I'm done with the food elimination deal I just thought that maybe the damage done to my intestines can take a long time to heal, that is why I was curious if anyone out there took a long time to finally feel better.

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Hi Curt,

I know everyone is different but it helps to hear other people's experiences. I started the gluten free diet on July 1st and limited my dairy. After about 6 days, the diahrrea stopped. Then about a week later, I would have another bout of D. I went crazy, trying to figure out what I had eaten that could cause this. In September I went completely dairy free as well. And as before, I would have weeks where I would feel some improvement and then go back down again. It has been somewhat of a roller coaster. So after all these months, I actually have weeks where I feel phenominal. But then I have a bad week again. IMHO, I don't think it's necessarily because I am eating something I am intolerant of. While certain foods do irritate my poor intestines (acidic, spicy, etc), I believe the roller coaster effect is in fact caused by the healing process. Sometimes we need to feel worse before we feel better. Case in point, when I started using a very good probiotic, after about a week some of my symptoms came back. At first I was so discouraged and tried to figure out what the heck was wrong with me. I did not change my diet just to see what would happen. Then a week later, things went back to normal and I was doing much better. Probiotics can cause the body to detox and bad bacteria to die off. The healing process does the same thing. As your body heals, it will get rid of toxins and bad bacteria. While this is going on, you might feel worse or at the least, not see any improvement.

I know there have been others on this forum who have had similar experiences. I have stopped freaking out everytime I feel worse and I no longer drive myself crazy trying to figure out what I could have eaten that is causing me to feel that way. I stick to the gluten/casein free diet completely, avoid irritating foods, and for the rest, am just going to give my body time to heal. Afterall, I figure it took me 40 years to get like this, it's going to take some time before I am completely healed.

Marlene

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Being fairly recently diagnosed with gluten intolerance and going a gluten free diet, it is such a relief to know that other people go through the same types of ups and downs that I am experiencing.

It does get discouraging, but it does help to remember that it will take time to heal as it did take a long time to get this way as well.

Lisa

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