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Before I begin the summary, I'm happy to tell you that my doctor called with the pathology report from the biopsies from my scope last Friday. He said although to the naked eye my small bowel still doesn't look normal, my villi look great! So I guess my diligence with my gluten-free diet for the past 2 1/2 years is paying off after all -- even though I'm 53 years old!! So I'm not as worried as I was when I posted my question last week.
Once again, I'd like to thank you all for your wonderful input! I received a ton of responses to my question. I am going to summarize the best I can. I want to thank each and every one of you. I am so very grateful to have this outlet to share information!
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Check out this article:
http://dogtorj.net/id16.html
Also now called the "Gut Absorption Recovery Diet"
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It is not unusual not to have complete recovery even at 5 years. http://www.ncbi.nlm.nih.gov/pubmed/12219789
Yes, you can become damaged beyond repair.
***** I recently had a follow up endoscopy performed by Dr. Anthony Baratta. The results came back as “focal villous blunting and chronic inflammation”. This result surprised me after being gluten free for 7 years with frequent normal blood antibody testing but Dr. Baratta assured me that this was normal for celiac patients. Having a healthy level of paranoia as required by most celiacs I did a little research and was very surprised by the results of the study at the following link: http://www.ncbi.nlm.nih.gov/pubmed/12556782?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed
As you can see, after an average of 8-1/2 years only 21% were normal. I would certainly believe that this could be the cause of so many food sensitivities, what appear to be “gluten reactions” or the fact that some don’t feel well for many years. If it takes this long for the intestines to heal imagine how long recovery from Neuropathy or Gluten Ataxia(as is my case) would take. I thought this would assure people that are not responding quickly to be patient and don’t give up on the gluten free diet.
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I have no info other than my experience--I continue to heal, and I have been gf since June of 2000. I see improvements almost yearly. 2008 was the first year my ferritin was truly normal. (I nearly died of anemia in 1999 and that was what led to my eventual cd dx. I had to have an emergency hysterectomy and subsequent blood transfusions till a dx was found, as I was intolerant of iron injections or pills.) I had gluten problems as a child (parents thought I outgrew it) and was ill my entire life with minor digestive and major other complaints, but was not dxed with celiac disease till I was 49. (I am now 57, which is close to your age, if you fast forward to the length of time I have been gf. ;) ) I still do have significant small bowel damage, yet, even as many of my health problems have resolved--osteoporosis, excruciating fatigue, other food intolerance.... I was surprised to read a news release explaining the new celiac
peptide pill which is in trials. It made a comment in it that 30% of celiacs continue to have problems and lack total healing from the gf diet and that is why a drug is important to address this. Here is the news release:
http://www.medicalnewstoday.com/articles/124585.php
So, I suspect due to your being undxed celiac for so long, you are correct that this IS why you are not seeing as quick a response to the diet. But this said, if you continue being gf, I would be hopeful that you will see more improvement over time. Some years it is hard for me to see the improvements and even some years I did regress occasionally (this was expecially true the first 3 or 4 years). I hope this calms
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