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gastroscopy
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gastroscopy
Hello after quite a long time, since I last wrote I am almost afraid to say I am doing pretty well reduced the endocort from 9mg for nearly a year down to 6mg and all seems fine so I plan to reduce again after 6 weeks to 3mg and see what happens. I talked to my GI last week and she was very interested to hear that if I eat any gluten the D. comes back with a vengance, she had preveously done a blood thet for ceolac disease with of course negative results, but at this meeting she sugessted a gastroscopy to see if she could see any signs, I have been off gluten fot over 6 months and she said that there may not be obvious damage but she would take biopsys, what do you guys think, should I bother as I know I cant eat gluten, she isnt trying to milk my insurance as it is all done free of charge anyway but to go through any procedure without it being needed makes me wonder, on the other hand she has been so very good with me that I feel I want to help her understanding of this condition so she can advise new patients,what would you do? One other thing I have learned which would only be of use to ladies is that after such a long time of D. I found that even without D, when I needed to go to the toilet the urgency was too much and I sometimes had accidents, I felt this was due to my rectal muscls becoming unused so I bought an Athena pelvic floor toner, the one I got has also a rectal toner setting and boy has this helped, I use it on the mixed setting so benifit both parts, the one I got is battery operated.Any opinions welcome on the gastroscopy, Beni
Hi Beni,
It's good to read that you're doing so well - it's always a pleasure to read success stories.
Whether or not to agree to an upper endoscopy exam is an interesting question. On the one hand, it will provide no benefit to you, since you already know that you are gluten-sensitive. On the other hand, it might help to increase the knowledge base of gluten-sensitivity and/or celiac disease, and it will certainly allow your doctor to learn something about microscopic colitis, and gluten-sensitivity.
IMO, the big question is whether or not you have a celiac gene. If you do, then even after 6 months on the GF diet, your small intestinal biopsies will still show significant villus damage, if you do indeed have celiac disease. IOW, you should still show a level of damage in the Marsh 2 or Marsh 3 range. Research shows that kids' intestines recover very quickly, but adults are very slow to heal from the damage done to the small intestine, by gluten. For adults, it typically takes 3 to 5 years to heal, and some of us never completely heal. So, IMO, it's not too late to look for small intestinal damage, in your case.
On the other hand, if you do not have a celiac gene, then it would be almost impossible, (IMO), for your Marsh score to exceed a level of 1. A Marsh score of 1, involves an elevated lymphocyte count, but no physical damage. Those of us with MC, who do not have a celiac gene, and who have small intestinal involvement as part of the MC inflammation, will typically show a Marsh 1 score, but it will almost never be any higher. Those who have a celiac gene, (but who receive a negative blood test result), will usually show a Marsh score of 1 or 2, and occasionally 3. Those with a celiac gene, who test positive to the blood test, will always have at least a Marsh score of 3, and it will often be 4.
Of course, it's strictly your decision, and frankly, I'm not sure what I would do, if I were in your position. It's a noble gesture, to volunteer to help to advance medical knowledge, but on the other hand, endoscopy exams are not much fun, especially when we won't benefit from them. There is one possible outcome that might make it all worthwhile, and that is the possibility that you may still show a Marsh 3 or 4 level of damage. If that happens, (and it's certainly a reasonable possibility), it would be further proof that the celiac blood tests are so insensitive as to be virtually worthless. That can only happen, though, if you have at least one of the celiac genes.
Thanks for posting an update. I hope your plan for reducing your Entocort dose continues to go smoothly. Please let us know if you decide to go through with this, and update us on the results.
Tex
It's good to read that you're doing so well - it's always a pleasure to read success stories.
Whether or not to agree to an upper endoscopy exam is an interesting question. On the one hand, it will provide no benefit to you, since you already know that you are gluten-sensitive. On the other hand, it might help to increase the knowledge base of gluten-sensitivity and/or celiac disease, and it will certainly allow your doctor to learn something about microscopic colitis, and gluten-sensitivity.
IMO, the big question is whether or not you have a celiac gene. If you do, then even after 6 months on the GF diet, your small intestinal biopsies will still show significant villus damage, if you do indeed have celiac disease. IOW, you should still show a level of damage in the Marsh 2 or Marsh 3 range. Research shows that kids' intestines recover very quickly, but adults are very slow to heal from the damage done to the small intestine, by gluten. For adults, it typically takes 3 to 5 years to heal, and some of us never completely heal. So, IMO, it's not too late to look for small intestinal damage, in your case.
On the other hand, if you do not have a celiac gene, then it would be almost impossible, (IMO), for your Marsh score to exceed a level of 1. A Marsh score of 1, involves an elevated lymphocyte count, but no physical damage. Those of us with MC, who do not have a celiac gene, and who have small intestinal involvement as part of the MC inflammation, will typically show a Marsh 1 score, but it will almost never be any higher. Those who have a celiac gene, (but who receive a negative blood test result), will usually show a Marsh score of 1 or 2, and occasionally 3. Those with a celiac gene, who test positive to the blood test, will always have at least a Marsh score of 3, and it will often be 4.
Of course, it's strictly your decision, and frankly, I'm not sure what I would do, if I were in your position. It's a noble gesture, to volunteer to help to advance medical knowledge, but on the other hand, endoscopy exams are not much fun, especially when we won't benefit from them. There is one possible outcome that might make it all worthwhile, and that is the possibility that you may still show a Marsh 3 or 4 level of damage. If that happens, (and it's certainly a reasonable possibility), it would be further proof that the celiac blood tests are so insensitive as to be virtually worthless. That can only happen, though, if you have at least one of the celiac genes.
Thanks for posting an update. I hope your plan for reducing your Entocort dose continues to go smoothly. Please let us know if you decide to go through with this, and update us on the results.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.