A Miracle?!? - Change In My Reaction To Gluten
Posted 05 November 2011 - 07:27 PM
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.
Posted 06 November 2011 - 06:19 AM
In their opinion, gluten intolerance symptoms are transient and do not cause permanent damage. I am gluten intolerant, not celiac—I do not have either one of the celiac genes. However, I would consider my long-term peripheral neuropathy and vitiligo to probably be permanent. They also state that “persons with a wheat allergy or gluten-intolerance usually do not have severe intestinal damage, and therefore are not at risk for these nutritional deficiencies” caused by malabsorption. I would suggest that my severe osteoporosis contradicts this.
Just wondering what the rest of you think. Can I expect my neuropathy, vitiligo and osteoporosis resolve now that I am gluten free?
I agree with what TAKALA has posted above and will add my two cents.
I am both a realist and a raging optimist (yes, that is possible!) who thinks that many of the symptoms I have as a result of gluten will either reverse, subside or at least, be more tolerable. I have dozens, some debilitating, yet I have had many diminish and I keep in mind that it may take YEARS for my body to "right itself" as I went undiagnosed for so long. That is not easy to do when every day is a struggle, but I keep my eyes on the prize.
There are many on this board who have had nearly all of their symptoms disappear and this is what I hang my hope on. So many gracious people who have told me their stories and who encourage others to stay focused and patient. My doctor also urges me to be patient. He says some neuropathy may not resolve, but then again, many report that it does. Mine has LESSENED after 10 months, and I was in burning hell, so I remain optimistic.
I find the wording in many sources of information about the "gluten sensitivity spectrum" to be somewhat "fuzzy" (some would use the word contradictory ) when it comes to symptom resolution.
Whom do we believe? Not sure myself.
The truth is, there is so much they still do not know about this "thing".
IMHO, gluten --whether you have a sensitivty, an intolerance or celiac--can wreak havoc. I think the inflammatory response from gluten intolerance is the underlying cause for many of the autoimmune diseases and "-itises" we all develop from it. (gastritis, thyroiditis, arthritis, vagninitis, chostochondritis, pancreatitis, sinusitus, blepharitis, etc...)
As far as the "celiac genes" go, the jury is still out on those.
Many people have diagnosed celiac and they have neither the DQ2 or DQ8 gene. There are several on this board, in fact-- and my doctor was stunned when one of his patients had celiac with neither of those genes. So, even THAT is not reliable as a tool for "excluding celiac".
The research that is ongoing tells us more and more. Dr. Fasano and colleagues published a report last Spring proving that gluten sensitivity causes many symptoms once attributed solely to celiac and intestinal damage. I think he's the man who seems to be on the right track for figuring this puppy out !
Whether those symptoms are transient or permanent may vary from person to person.
Depending upon was CAUSED the symptoms will determine what reverses or resolves. If the neuropathy was caused by a B-12 deficiency for example, and the deficiency is addressed, the neuropathy should clear. Several factors contribute to osteoporosis (as you probably know) and so, those issues need to be addressed IN ADDITION to removing the offending gluten. Many claim that osteoporosis can be reversed or at least halted with proper diet, cal/mag supplementation and exercise or in severe cases, with medication. I had a rapid decline in bone density myself in just one year, so I am hopeful that will stop.
While gluten sensitivity is a contributing factor in many of these symptoms, there may be other reasons why they develop as well. Eliminating gluten is part of the solution to resolving health problems, but addressing the other factors is also necessary. I took out gluten, and yes, that stopped the autoimmune attack, but I had multiple vitamin/mineral deficiencies and B-12 and Folate anemias that needed to be supplemented.
Just FYI RE: vitiglio....I read this interview with Dr. Fasano that mentions vitiglio if you are interested. The interviewer has it herself and tells him that hers is resolving on a gluten-free diet.
And most importantly....
You will notice the wording from that article excerpt you posted above uses the word "USUALLY" ....as in "usually does not cause" intestinal damage ?? This must mean that SOMETIMES it does. This type of careful wording is used in publications because quite frankly, it seems no one really knows for sure what the hell is going on with gluten!! I know this, it is not the healthy grain humans once thought it was because it has been modified and tinkered with so many times.
That's a long answer to your question (sorry) but IMHO, I think that IN TIME, many symptoms CAN reverse. Many "success stories" on here are far more encouraging than any of the doomsday "literature" that circulates on the internet.
Personally, I choose to believe that in time, I can resume a healthy life once more. But in my case, I would never, ever put that poison in my body again, regardless of what "they" say about celiac being "cured". To fully understand the nightmare this has caused me, you would have to have walked (or should I say staggered) in my shoes and suffered the drastic consequences of celiac to understand why I doubt this concept.
Best wishes to you!
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love."
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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