<<Disclaimer: Verify this information before applying it to your situation.>> Healing I just had a similar experience. I had a repeat biopsy two and a half years after going GF. The repeat biopsy showed good improvement over the original one, but still showed damage consistent with Celiac Sprue. I was pretty upset because I have been very conscientious and have felt quite well. I sent both sets of biopsy slides to Dr. Peter Green at Columbia University Celiac Center and he assured me that for an adult, my slides were pretty much the norm. He said that an adult might never show completely normal villi and that the most important thing to monitor was the blood. He said that if I kept the blood tests in the negative ranges, I should forget about any additional biopsies. That is what I am going to do. ------------------- I don't think there is one timetable that fits all celiacs. Some people heal faster; some people take longer to heal; that's how you get averages. In my case, after diagnosis at age 54, I had a second biopsy after 1 year on a strict GF diet; the results were similar to yours after 18 months. However, when I had a third biopsy, at 18 months, I was completely healed. So, maybe it just will take longer for your body to complete the healing process. Don't get discouraged, though, the diet is helping you and you are well along the road to recovery. ------------------------------ You are fine. I was dx in Sep of 99 and went TOTALLY gf. I am still a strictly gf person......never intentionally ingested gluten since dx. I went for a follow up endoscopy in august of 00. I was EXTREMELY discouraged to read the pathology report that said "severe atophy of intestinal lining and blunted villi". Both my gastrointestinologist (I see a doctor at Northwestern in Chicago, only the best for me!) and I were discouraged so much we asked the pathologist to compare the two slides side by side and the new report said "slight" improvement. I had the same concerns as you regarding my healing as I had heard so many celiacs talk about no signs of sprue if they had been gf for a month or so.....anyway, I e-mailed Dr. Joseph Murray, a celiac specialist at Mayo Clinic in Minnesota and believe it or not, he answered me the next day. He said that if the symptoms have subsided, I should have no concerns and it could take 3-5 years for healing depending on the severity of the damage before diagnosis. So there you are. Keep watching your food, checking with those manufacturers, and have faith you're healing. I will not even ask for another endoscopy unless I have continous symptoms again. My iron levels are up, my calcium levels are up, my brain fog is gone, as far as I'm concerned, my gut is getting better too, if it hasn't already. ----------------------------- My guess is that you have completely removed gluten from you diet, but that your small intestine just hasn't healed completely. After 40 years of type 1 diabetes, I wouldn't be surprised at a slow healing rate. I think I read somewhere that adults who are diagnosed relatively late in life may never have 100% healing of the small intestine. What about your symptoms? Did you have symptoms before you were diagnosed? If so, are they still occurring, or have they disappeared? How do you feel now compared to the way you felt before diagnosis? MY 15 year old son was diagnosed one month after you were. His main symptoms were growth failure and stomach aches. After 5-6 months on a gf diet, his growth rate returned to normal. His stomach aches are 85% gone. However, he still can't tolerate regular milk, which indicates to me that his small intestine is not completely healed, even though his major symptoms are gone. I think it would be a good idea for you to speak with a very experienced Celiac doctor about your follow up biopsy. Do you have an "expert" physician you can contact? How much do you value the opinoin of your doctor who ordered the followup biopsy? What does he (she) say about it? If you don't feel 100% confident with your physician, can you get a recommendation from your local support group for a doctor you can consult with? If you're really stuck, contact me and I'll provide you with the names of a few doctors who specialize in CD. Maybe one of them will reply to an email from you. ------------------------ A few weeks ago I had a follow-up biopsy to see if things were healing. The results came back that I had "mildly blunted villi, consistent with partially treated celiac sprue". Ah ha! Another "mildly blunted" club member. I had my biopsy 4 years ago. I had been GF about 3 months, then did a 1-week challenge. Could barely keep the food in me, so the challenge was not as wheat-filled as it should have been. And I came back blunted villi, all heads bent at right angles and in 'crop circle' patterns. My GI guy says it was the weirdest colon he's ever seen - - he's been circulating my biopsy bits ever since and no one has a clue. --------- 1. If you were not having symptoms and your yearly blood test is negative yoiu should not have had another invasive biopsy....so says Dr. Fasano..and I totally agree. It is only a money maker for the md and a risk for you. 2. You have had celiac disease all your life....just mnot diagnosed..so if you are better now that you are GF ..you are still getting better. Takes 18-24 mos..so I was told at another celiac conference. 3. THUS no symptoms = no biopsy.you should be able to tell by GI symptoms if you ar e ingesting gluten by now. And if you feel better no more invasive procedures. -------- Many people take a year or two to heal. And some never heal completely and remain lactose intolerant for life. ---------- I just got an upper GI last friday and haven't got the results yet. It was terrible in my case I ahd an insulin reaction right at lunc h time. In hind sight I should ahve made them do it earlier. I have T-1 diabetes (1971) DH (1992) CD (1996) and psoriasis in 2000. ------------------------ DOESN'T SOUND LIKE YOURS WILL HEAL COMPLETELY , MINE DIDN'T AFTER 16 YRS GLUTEN FREE ---------------------- I have been very careful with my diet since July 1998...I have to get my follow up biopcies done soon...I wonder what I will get... But it took 3 years for me to feel getting better...I had terrible rash which did not go away until last year. I found out that I was intolerant to casein and when stoped getting any form of cow milk stoped my rash too.. I wonder if you have another hidden intolerances other than gluten? ---------------------------------- It really varies from person to person, and especially the time to heal will vary depending on the degree of damage at diagnosis. You never really said how much damage you had suffered, but the more damage the longer it would take to heal. Good luck and keep the faith you will get better eventually. ---------------------------------- Here is an email message I recently received from Ron Hoggan, a Celiac and author of a new book called Dangerous Grains. I had asked him a similar question.... There are, of course, many possible explanations for the return of the bloating and gas. I'd like to suggest two of the possibilities that are common : 1. You may be continuing to eat traces of gluten. During the first weeks of the diet, dramatic reductions in gluten intake may result in substantial recovery from symptoms. However, it is common to become increasingly more sensitive to gluten during the first year or two, forcing increasing levels of vigilance to remain symptom free. It was quite an annoyance during my first year, but it was also very valuable. Now, I seem to be les s sensitive, but I am in the habit of strictly complying with the diet. For instance, I don't eat toast out of a toaster used for gluten-containing bread. I won't use butter that has been used by people buttering regular bread or toast. I probably don't need to be that fussy anymore, but it is a habit that keeps me well, so I am reluctant to change any part of it. 2. It is also possible that you also developed some other food allergies. During the years when gluten was causing increased intestinal permeability, you were probably leaking a variety of food proteins into your bloodstream. Your immune system is likely sensitized to several. You might consider getting ELISA testing for common food allergies. Hope that helps. --------------------------- 1-2 years is my understanding for the villi to heal. Do not know about impact of diabetes on healing. -------------------------- I underwent an endoscopy and colonscopy to determine why I was having continuing, severe diarrhea inspite of following a careful gf diet for 3 years. As it turned out, my problem is microscopic colitis, which is being successfully treated with Asacol. My gastro also stated that, while my blood tests were negative for the first time since diagnosis, my small intestines showed continued signs of damage, which will probably never heal. I was suprised, I thought a careful diet led to complete healing. Evidently not. My gastroenterologist is very experienced with celiac (his son has celiac disease), and states that long-term damage may result in incomplete healing, regardless of the maintenance of a careful diet. If you are continuing to have problems, consider other posssibilities, and remember it can take a number of years to recover enough to actually feel right again. Hope this helps. By the way, microscopic colitis does not lead to cancer or ulceration, which might require surgical excission, so I'm actually feeling pretty lucky at this point! Be well and trust your own highly trained judgement when it comes to food ---------------------------- I was diagnosed with celiac last November and when I had my endoscopy my doctor told me it could take up to 2 years for your dueoduem to heal and for your villi to start working. --------------------- It usually takes about a year for the gut to heal completely, so maybe, as you said, your diabetes has something to do with it. You could also ask your doctor for some advice. ----------------------- I can only tell you that I had a biopsy done 7 years into the GF diet. I am always extremely careful and it was not fully healed at that time. I was told by my doctor who is a celiac researcher that he expects to still see some damage when celiac has been present for a long time--untreated prior to diagnosis. He said that children heal very much more completely and did not feel my diet was to blame. A few years ago it was slightly better. These two biopsies were done because of weight loss, and other symptoms to rule out any lymphomas. I do not eat processed food or eat out very often. These are strong possibilities if you/your doctor feel your diet is to blame. Also you might recheck any meds, vitamins, etc. that you take--these formulations do change. I felt recently that I was having problems with a medication that the company assured me was GF. It was changed and I now feel better. May have been gluten or something else. *Please provide references to back up claims of a product being GF or not GF*