This is my first post to this board. I just ordered "Tex"s book and should receive it later this week. But, from what I understand from this forum, part of helping control symptoms of my MC would be going gluten and dairy free, correct?
I had an edoscopy at the same time as my colonoscopy (where my MC was diagnosed). I did not have celiac and I had previously had a blood test that said I was not gluten intolerant.
Question 1. Is it still necessary for me to go gluten free?
Also, I am lactose intolerant and I am sure that lactose affects my MC.
Question 2.
Can I still have hard cheeses, lactaid milk and soy?
I know beans affect my MC very badly. But i don't know about other vegetables.
Question 3. Are there other vegetables/fruits that should be avoided?
I know I should probably just wait until I get the book, but I thought I would throw this out there if anyone has any thoughts.
Welcome to our internet family. Here is the problem with your doctor's claim that you are not gluten-sensitive: The mainstream medical community has absolutely no way to test for gluten sensitivity. The blood tests that they offer will only detect fully-developed celiac disease. Those tests are so insensitive that they virtually never detect the early stages of celiac disease or the type of gluten-sensitivity that most of us have (non-celiac gluten sensitivity). Except for those of us who also have fully-developed celiac disease, those tests always show a negative result for us, even though we are just as sensitive to gluten as the average celiac.
Before those blood tests will show a positive result for celiac disease, there must be at least enough damage to the villi of the small intestine to score at a Marsh 3 level of damage or above. Unfortunately it takes years for that much damage to accrue. That's why the average length of time from the onset of symptoms to an official diagnosis of celiac disease still averages about 9.7 years in this country. Sadly, they simply don't have any official way to diagnose the disease any sooner, so most celiacs have to suffer for many years, before receiving an official diagnosis.
The reason why they don't have an acceptable way to diagnose gluten-sensitivity is because they are too hard-headed to officially accept and endorse the stool tests that were developed by EnteroLab almost 15 years ago. Because of professional snobbery, they choose to do without the benefits of those tests. Most mainstream doctors choose to boycott the lab because the lab chose early on to offer the tests direct to patients, over the internet, and that upsets most doctors (they prefer a try to maintain a monopoly on testing decisions). And they can afford to ignore the tests. After all, it's no hide off their butts — it's their poor patients who have to suffer because of their childish behavior.
Anyway, the point is, if you want to find out whether or not you are actually sensitive to gluten (or other foods), the only accurate and reliable way to do that is to order a test kit from EnteroLab in Dallas, TX, that will allow you to collect and send in a stool sample to be tested.
The other option is to simply avoid all possible inflammatory foods until you achieve remission from your symptoms (by following what's called an exclusion diet), and then test the various suspect foods, one at a time, to determine by trial and error whether or not you are sensitive to them. Either method can be used, it's just much simpler and faster to use the lab tests, because those test results are almost always accurate and definitive. An exception occurs for people who have selective IgA deficiency, because anyone who does not produce a normal amount of immunoglobulin A, will always show false negative results on any ELISA tests (that applies to the blood tests used by doctors, also, by the way).
I would guess that approximately 98 % of us here are sensitive to gluten, and about 70 % (more or less) are sensitive to casein (the primary protein in all dairy products). Almost that many are sensitive to soy and most legumes. Probably less than half of us are sensitive to eggs, and some members also have various other food sensitivities.
Everyone is lactose intolerant when they have enteritis (intestinal inflammation), because the small intestine cannot produce digestive enzymes in adequate amounts when it is inflamed. The first enzyme to be lost is always lactase, and as our intestines heal, it is the last enzyme for which production resumes.
Most fruits have to be avoided, because we can't digest sugars very well until we heal, and fructose is especially difficult to digest. When sugars are not completely digested, they sit in the colon while they are fermented by bacteria, resulting in gas, bloating, cramps, and diarrhea.
Many vegetables also have to be avoided until we heal, because fiber is so irritating that it can perpetuate the inflammation. Many of us can tolerate small amounts of overcooked veggies, but they should be peeled (to reduce the fiber content) and overcooked, to make them easier to digest. Things such as squash, carrots, sweet potatoes, and green beans are options for many of us, but we each have our own specific food sensitivities, so everyone has to fine-tune their diet to suit their own personal situation.
I have no idea how long it will take for the book to arrive, but if you would like to get a head start on reading it, and you happen to have a digital reading device, I'll be happy to email you a digital copy that you can read while you are waiting for the printed version. Just let me know which type of device you have, because they all require differently-formatted digital files.
Also, would you like for me to convert that photo to an avatar for you ? It would make a good avatar.
Again, welcome to the board, and please feel free to ask anything.
Tex (Wayne)
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.
I couldn't figure out how to message you outside of the forum? But, I would love a digital version to get started reading! I have a kindle. I am not sure how you get that to my kindle?
Also, feel free to use my picture as an avatar (I assume that means your picture next to your comments?)!
I was diagnosed through a colonoscopy/biopsy about three months ago. I went through two months of Entocort and finished that a week ago. I am feeling pretty good, but am scared the symptoms will come back. I had a severe virus...actually probably Ecoli where I had non stop diarrhea for 10 days. Things were never quite the same after that. Then after my back went out a couple months later, I took TONS of Advil for a few weeks and all my symptoms came back full force. Hindsight is 20/20.
I have never had trouble with gluten before (gas, diarrhea) but I have also never had MC before. I have always had problems with lactose (not sure about casein?) so I am trying to go off of lactose. Maybe I should go off of ALL dairy?
Will the EnteroLab test for casein as well as gluten? Are the tests expensive?
Once again...thank you SO much. I am glad to have you, your book and this forum.
You'll be able to see the buttons that link to email addresses and personal messages to other members after you write a few more posts. That's a security feature built into the code to help prevent spammers from joining and collecting contact information from members here.
The food sensitivities (especially the gluten sensitivity) catch virtually everyone by surprise. According to research, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity and other food sensitivities are also triggered at the same time.
I'll send you a digital file that you should be able to open on your Kindle. I'll attach it to an email that I'll send to the address that you used when you registered your membership on this board. I don't have a Kindle so I'm not sure how you would load the file from your computer into your Kindle. I have a Nook, and for it I can just transfer a file to it through a USB connection, and the nook automatically recognizes it as a book and makes it available for reading. It could probably also be done through a wifi connection, but I've never even tried that. I do use my smartphone as a mobile hotspot to provide an internet connection for the Nook, by means of a wifi connection, but I've never tried transferring files to the Nook through a wifi connection from a PC.
If you have a problem getting the file into your Kindle, maybe another member here who has a Kindle can offer some guidance. If worse comes to worse, you have the option of downloading a PC version of the Kindle reader that will allow you to read a Kindle file on a PC. Or if you prefer, I can email you a PDF file that you can read on your PC by means of Adobe Reader. Personally, I prefer reading PDF files with Adobe, over the PC version of a Kindle reader, but I'll do whatever you prefer.
In fact, I'll just send you both files attached to the same email, and if you can't get the Kindle file to load into your Kindle, you can read the PDF file on your PC.
If you have any problems using these files, or if that email doesn't show up in your mailbox the next time your email client checks for mail, please let me know.
Here's a link to information on the tests offered by EnteroLab, so that you can see what tests are offered as panels (at a discounted price), or as individual tests.
You're very welcome. I hope that you soon have your life back.
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.
Is there a link to a study about the gluten genes being triggered when the MC genes are triggered? I think I may need it for my GI now. I think she just puts things I print for her in my file.
DISCLAIMER: I am not a doctor and don't play one on TV.
If you go to that link, the information I cited is found in the last couple of sentences of the 3rd paragraph on the page:
What is the cause of Microscopic Colitis?
Extensive data from animals (mainly rodents) suggest that any form of colitis is the result of the body's immune system setting up an unusual attack on the bacteria living in the colon. What makes the body suddenly recognize these bacteria as harmful and worthy of this attack is not fully understood but there are several clues based on my research. First, it is known that aspirin and other non-steroidal antiinflammatory drugs (NSAID's) can cause this reaction. Also, if the balance of less immune stimulating bacteria (we will call "good bacteria") and more immunostimulatory bacteria ("bad bacteria") favors the latter, inflammation can result. This can occur from use of antibiotics and probably from chronic consumption of certain foods that favor growth of bad bacteria. The role of yeast (for example Candida) in this process is unstudied and therefore unknown. However, whatever tips the scale toward this reaction, it appears that there is an underlying gene responsible for the predisposition to have this form of colitis. In fact, my recent studies have revealed in most cases, the gene is the same as the one known to cause celiac sprue and gluten sensitivity (explaining why some patients get both syndromes). Furthermore, it appears that colitis can cause the immune system to begin recognizing gluten as immunostimulatory and vice versa, gluten sensitivity can lead to colitis.
I believe that he did publish this finding in a medical journal, but I'm not sure if I have a link to it in my bookmarks or not, I'll take a look, but I have zillions of such bookmarks, so it may take a while to find it.
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.
OK, that information is probably in the article described in the abstract at the link below. I don't have access to the full article in the American Journal of Gasteroenterology, but your doctor should be able to access it if she is inclined to do so:
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.
I'm certain she believed me at one time because she called another MC patient to tell him or her about gluten. Maybe, it just all the rest of my intolerances, I just don't know.
I took your book with me but felt she would not be receptive at all. I did read the Entocort info on the back from Polly and stated she was a doctor etc.
I wish I'd said she was the one who had no evidence of MC on her biopsy after finding and giving up her intolerances.
I'm sure I'm the most difficult patient she has.
DISCLAIMER: I am not a doctor and don't play one on TV.
Joan wrote:I'm sure I'm the most difficult patient she has.
Yep, most patients just "learn to live with it".
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.
Hi Tex,
I googled EnteroLab yesterday and got onto their site. It was the same price as was on the link you sent me ($269.00) for panel A. How do I go about getting your discounted price?
Thanks!
Marty
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.
I think she just puts things I print for her in my file. 
