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Sucess Stories


momxyz

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momxyz Contributor

I thought I would start this topic because when people surf to a forum like this they are not only looking for answers and explanations, but also rays of hope, that it is possible to feel better. And its the experience and support found on this forum that is valued by so many!

This is for the newcomers to this forum, but also for those who may be in a tough place, for whom stories of positive outcomes could help keep them going.

The manifestations of Celiac and gluten intolerance are many and varied, but I am inviting everybody to share...

For me, today is exactly day 70 trying to stay gluten free. I came to this forum, looking for info to help my daughter... I didn't think I had a problem with gluten. A few weeks after my daughter went gluten free, I began to wonder if my persistent and very itchy rash - which started last fall and didn't seem to respond to any topicals I used - could be DH.

I did not seek an official diagnosis for this, but my rash had many of the hallmarks of DH... so I went gluten free.

Long story made short: my rash is now subsiding. The itching is almost entirely gone. Onlyl two new blister in the last two weeks and they are already going away. Ironically its the older spots that are taking longer to heal but their redness is now starting to fade. Even if the brown spots left behind take some time to go away, I will be very happy with just no more red!


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ravenwoodglass Mentor

For me the biggest success is I am still alive and in less pain than I ever remember in my entire life. I was very difficult to diagnose and very ill for a very long time. When I was diagnosed I only expected my GI issues to go away and I would have been happy for just that. My last 5 years undiagnosed I was up every night with gut wrenching pain and D in addition to not being able to leave the house during the day without heavy meds to prevent an accident. I was very surprised when within 6 months the horrible oozing burning sores that covered my back, face and spots on my arms and legs were gone, I was able to walk most of the time without falling over, my fibro was a thing of the past as was my migraines. My arthritis went into remission and I was able to use my hands and walk pain free. One of the best things was I was even able to read again, something I cherished throughout my whole life but had given up because I couldn't concentrate long enough to be able to remember anything I had just read long enough to follow even a simple story. The last few years before diagnosis the only thing that kept me alive was my children. If I hadn't had them I might have committed suicide to end the pain. I may never be able to fully regain some of thought processes I lost, I still get easily confused and have a few other issues but they are nothing compared to what I went through prediagnosis. The one thing I haven't recovered from is my distrust of doctors and anger at their unfailing reliance on those blood tests. If just one had suggested I try the diet, just one, life would have been so different for myself and my children. But I have come too far to spend my energy worrying about what might have been. I can now look forward to life and be thankful for what I have achieved healing wise. The diet is difficult at first but it is so worth it and all the trouble when the pain stops and the world begins to be a clearly more beautiful and painfree place to be.

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      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
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