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The Savvy Celiac: Does Celiac Disease ever go away?

So I have heard occasionally from folks this question after a celiac diagnosis, "When will I feel better?" or "When will I be healed?"  And that’s a tough one to answer.  In fact, it turns out the older you are and the more damage that’s been done, the more difficult it is for your gut to heal.

The research: recovering after a celiac diagnosis
Research reported recently by celiac.com, discusses how adults may have a harder time healing the gut after their celiac diagnosis. They may be feeling better, but their gut still may be far from healed.  But it’s important to get the intestine healed by eating a gluten-free diet; thus, lowering your chances of additional health problems as a result of celiac disease. The research found:

"More than 80% of patients showed some clinical response to the gluten-free diet, but clinical response was not a reliable marker of mucosal recovery [healing of the intestinal lining]…"

"One of the most important findings from this study was that a large number of adults with celiac disease see no mucosal recovery, even after treatment with a GFD [gluten-free diet].  Compared to those patients who suffered persistent damage, patients who experienced confirmed mucosal recovery had lower rates of mortality independent of age and gender." – www.celiac.com


The research eventually suggested that intestinal biopsies may be in order to check on intestinal healing in adults.

Last year Nancy Lapid of About.com explored this issue when reporting another recent Mayo Clinic study.  What Dr. Alberto Rubio-Tapia told her about the Mayo Clinic study, didn’t leave me with an overwhelming sense of confidence in intestinal recovery on the gluten-free diet.  He said the study group was very good on the gluten-free diet during the testing but still had intestinal damage:

"I am not sure if [these patients] will never completely recover or if mucosal recovery may be obtainable but requires longer time,”… “In general, our patients are doing a good job with adherence to the gluten-free diet but it is possible that [hidden] gluten sources (difficult to identify without standard labeling for gluten-free foods) play a significant role." –About.com

He too, recommended follow up biopsies to know for sure if the intestine is healing.

Conclusion
The immediate answer to the initial question is — no one really knows when for sure your gut will heal. Experts say it may depend on your age and how long you’ve had flattened villi.  I am currently finishing up the book: Celiac Disease a Hidden Epidemic Revised and Updated, by Dr. Peter Green and in his book, he says,

"Not everyone gets well rapidly.  Some patients are simply slow responders and require months (or more) to see an improvement.  Medically the time frame hinges on the nature, severity and duration of symptoms prior to diagnosis."  Celiac Disease: A Hidden Epidemic

But this doesn’t take into account what the above studies are suggesting, that you may feel better but that your gut still needs to heal more.

And a reminder here that I am not a medical doctor — but here’s my best advice: 

Be extremely strict with your gluten-free diet.  The less cross contamination or cheating that goes on, the better your gut will heal.  Yes, it might take longer than it did with my 15-month-old (who visibly turned around in a week), but sneaking gluten or being careless with cross contamination will only make it take longer.

Celiac disease itself never goes away because it is an autoimmune disorder that is in your genetic makeup.  But with good skills in the gluten-free-eating department, you should be able to help your gut heal as best it can, hopefully reducing the chances of getting other health problems that can come along with celiac — like cancer, osteoporosis, infertility, and more.

This post was originally published by Amy Leger on The Savvy Celiac.

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Comments (2)

I have a sister and a brother who were both diagnosed in infancy. We were extremely strict with their diet for years. Eventually they were able to return to normal diets.

This is a confounding article. It makes it seem as though one can return to a gluten-laden diet eventually. Celiac patients are unable to process gluten, -it is literally toxic to their guts. I am also highly skeptical that more biopsies are needed to "be sure the guts have healed." When a dietary change is often all that is needed, the $$$ trail for doctors ends at that initial diagnosis. No drugs to sell, no additional office visits. This is one of the most wrongly/under-diagnosed diseases out there, and it very well could be because there is nothing to sell people after diagnosis, other than healthy, gluten-free foods. I am 8 years gluten free with no plans on returning to my former diet. Looking back to my teen years, I can now see the intolerance I had to gluten then, and how changing my diet was all that was needed. Food labeling could use some help when it comes to gluten-containing ingredients like "modified food starch." But label reading and whole, unprocessed foods make it feasible.