Hi Tex,
Wow I am so sorry to see those results for you! You are a Veteran at this! Well at least this teach all of us another lesson against the war on MC.....ALWAYS watch what we put into our mouths at all times and this is a life long journey.
Have you had any other signs or symptoms other than aches and pains in your joints?
Love Robin
Good News And Bad News
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I've had some unexplained muscle pain, too, at times, but I haven't had any explosive, high-volume D, except for that incident before Christmas, that I posted about, when I was glutened at a restaurant. Apparently, most of the time, I'm not getting enough gluten to cause a full-fledged flare, and I seem to be asymptomatic to casein - at least I don't get D from it.Robin wrote:Have you had any other signs or symptoms other than aches and pains in your joints?
Love,
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex
i make pancakes using my original receipe i have had since i was a child
I use a good quality GF flour blend
i use a GF/DF/SF spread as the butter replacement,
as the milk replacement i use half water and half coconut milk.
for sugar in my receipes I use organic brown sugar or palm sugar.
only took a couple of go's to tweak the amounts of the ingredients to get close to perfect pancake
as part of my 'remove any risk of contamination' cupboard clean out about 18 months ago, i gave away all my cake cooking tins to friends and only use cooking pans and tins purchased post MC diganosis.
the events and the results you have shared is a great reminder that an MC'er has to be vigilant and on guard at all times...
**Sigh**
i make pancakes using my original receipe i have had since i was a child
I use a good quality GF flour blend
i use a GF/DF/SF spread as the butter replacement,
as the milk replacement i use half water and half coconut milk.
for sugar in my receipes I use organic brown sugar or palm sugar.
only took a couple of go's to tweak the amounts of the ingredients to get close to perfect pancake
as part of my 'remove any risk of contamination' cupboard clean out about 18 months ago, i gave away all my cake cooking tins to friends and only use cooking pans and tins purchased post MC diganosis.
the events and the results you have shared is a great reminder that an MC'er has to be vigilant and on guard at all times...
**Sigh**
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes,
Thanks for the tips.
Tex
Thanks for the tips.
Yep, MC is a life-long project, once it begins. It's easy to become complacent, when things seem to be going OK, but if we let down our guard, it comes back to bite us in the butt.Gabes wrote:the events and the results you have shared is a great reminder that an MC'er has to be vigilant and on guard at all times...
**Sigh**
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.
Tex,
Using your logic, it would seem to be nearly impossible to be completely GF in a household where others are not GF.
When I emptied the dishwasher today, I noticed a wheat-based noodle sticking to a spoon. Then I looked at a frying pan DH put in the dishwasher after dinner, and it still had a wheat noodle in it. I've asked DH to rinse off all of his dishes and pans before putting them in the dishwasher, but apparently he forgets. We need separate dishwashers. LOL
Gloria
Using your logic, it would seem to be nearly impossible to be completely GF in a household where others are not GF.
When I emptied the dishwasher today, I noticed a wheat-based noodle sticking to a spoon. Then I looked at a frying pan DH put in the dishwasher after dinner, and it still had a wheat noodle in it. I've asked DH to rinse off all of his dishes and pans before putting them in the dishwasher, but apparently he forgets. We need separate dishwashers. LOL
Gloria
You never know what you can do until you have to do it.
WOW, Tex!
This is so interesting!!! I think you hit the nail on the head when you said you need to do all of your own cooking. When I had my first Enterolab gluten antibody test it was around 45. I immediately went GF, using alternate flours and supposedly GF processed foods. A year later, my level was slightly higher when Enterolab re-tested it. That's when I realized that I was highly sensitive to gluten and needed to have very strict control over everything I put in my mouth. I became suspicious of any processed food and really cut back, and this was long before we realized the value of the caveman diet. I really thought I had been eating GF that first year, so it was quite a shock.
Another piece of "good" news related to your results........perhaps this is the cause of some of your lingering health problems, especially since you seem to be very sensitive to neurological effects (TIA-like stuff, reflex abnormality, neuropathy, balance, etc.). And, I know you have heard me say before that my muscle and joint aches/pains were more related to dairy than to gluten.
Yes, you are proof that the leaky gut/food sensitivity issues that go along with MC occur in the small intestine. The large intestine (colon) is mainly concerned with water absorption - not major nutritents. Now here is the million dollar question - how do we get the GI community to recognize that small bowel problems are an integral part of the large bowel (colitis) problems????
Did you have any other foods tested by Enterolab this time? Do you think it might be wise to do this?
Love,
Polly
This is so interesting!!! I think you hit the nail on the head when you said you need to do all of your own cooking. When I had my first Enterolab gluten antibody test it was around 45. I immediately went GF, using alternate flours and supposedly GF processed foods. A year later, my level was slightly higher when Enterolab re-tested it. That's when I realized that I was highly sensitive to gluten and needed to have very strict control over everything I put in my mouth. I became suspicious of any processed food and really cut back, and this was long before we realized the value of the caveman diet. I really thought I had been eating GF that first year, so it was quite a shock.
Another piece of "good" news related to your results........perhaps this is the cause of some of your lingering health problems, especially since you seem to be very sensitive to neurological effects (TIA-like stuff, reflex abnormality, neuropathy, balance, etc.). And, I know you have heard me say before that my muscle and joint aches/pains were more related to dairy than to gluten.
Yes, you are proof that the leaky gut/food sensitivity issues that go along with MC occur in the small intestine. The large intestine (colon) is mainly concerned with water absorption - not major nutritents. Now here is the million dollar question - how do we get the GI community to recognize that small bowel problems are an integral part of the large bowel (colitis) problems????
Did you have any other foods tested by Enterolab this time? Do you think it might be wise to do this?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Tex,
I made my first loaf of bread using Pamela's bread mix, and it was hands down the BEST GF bread I've ever had, perhaps the best bread among gluten breads too!! Yellow-ish, spongy, moist, slightly sweet like egg/challah bread. Simply amazing, and very easy to make!! You only add oil and eggs. I just bought the pancake mix but haven't tried it. I prefer Pamela's flour to King Arthur, so stick with your pancake mix and sub the milk! I sub coconut milk and Earth's Best for milk and butter. Or better yet, make french toast with Pamela's bread.
I made my first loaf of bread using Pamela's bread mix, and it was hands down the BEST GF bread I've ever had, perhaps the best bread among gluten breads too!! Yellow-ish, spongy, moist, slightly sweet like egg/challah bread. Simply amazing, and very easy to make!! You only add oil and eggs. I just bought the pancake mix but haven't tried it. I prefer Pamela's flour to King Arthur, so stick with your pancake mix and sub the milk! I sub coconut milk and Earth's Best for milk and butter. Or better yet, make french toast with Pamela's bread.
Gloria wrote:When I emptied the dishwasher today, I noticed a wheat-based noodle sticking to a spoon. Then I looked at a frying pan DH put in the dishwasher after dinner, and it still had a wheat noodle in it. I've asked DH to rinse off all of his dishes and pans before putting them in the dishwasher, but apparently he forgets. We need separate dishwashers. LOL
That's one more reason why I feel that it can't be done on a long-term basis.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.
I believe that once our sensitivity sort of matures, it takes very little gluten to keep the IgA antibodies at a relatively high level in the gut. In fact, I wonder if extremely small amounts may be sufficient to keep that IgA level elevated. Specifically, what I'm suggesting is that amounts below the threshold normally considered to be quite safe for celiacs, (IOW, below 20 ppm), might still perpetuate the production of IgA antibodies in the gut. Remember that Dr. Fasano's trials that established that supposedly-safe number, were all based on blood tests, not stool tests, (and we all know how inaccurate they are).Polly wrote:A year later, my level was slightly higher when Enterolab re-tested it. That's when I realized that I was highly sensitive to gluten and needed to have very strict control over everything I put in my mouth. I became suspicious of any processed food and really cut back, and this was long before we realized the value of the caveman diet. I really thought I had been eating GF that first year, so it was quite a shock.
Additionally, the endoscopy criteria that they normally use for such determinations are based on a Marsh score, of 2, 3, or 4, (based on biopsy samples taken from the small intestine). IOW, anything below a Marsh score of 2 is not considered to be a celiac reaction, bescause it does not show any villus damage. That means that a Marsh score of 1 would be considered to be a non-reactive level, as far as celiac disease is concerned. On the other hand, we know that a Marsh score of 1 is quite common with MC, and the criterion for a Marsh score of 1, is an elevated T-cell count, (over 20 lymphocytes per 100 enterocytes), exactly the same as the criterion used to determine a diagnosis of LC, based on the analysis of biopsy samples taken from the colon.
Therefore, the typical celiac standards ignore the lymphocytic changes in the gut, and allow the proliferation of a T-cell reaction, so long as it does not cause physical damage, (atrophy), to the villi of the small intestine, and so long as negative serology exists. This makes me pretty suspicious that once we are gluten-sensitive, we may never be able to show an anti-gliadin antibody stool test, (based on IgA), below the threshold for a negative result. IOW, I'm suggesting that we will always test over 10, simply because it is impossible to find food with zero amounts of gluten, and even just a few ppm of gluten may cause continued antibody production at a level that will preclude ever achieving a negative result on an IgA stool test. This implies that we might be asymptomatic, but still show an elevated IgA stool test result, because of miniscule levels of gluten contamination. Do you see what I' saying?
The 64 dollar question is, "Has anyone who is gluten-sensitive, ever been able to receive a negative stool test result, regardless of how long they have been on the diet?"
Regarding the gastroenterologists, I believe that I have enough scientific evidence in my manuscript to convince a significant percentage of them to rethink their position on a lot of things, but the trick is to get them to read it. That might happen if I could convince you to co-author, or at least endorse the book, in order to give it some medical credentials.
I had Enterolab tests for eggs, soy, and yeast, 6 years ago - all results were clearly negative. Do you suspect that those results might no longer be valid? I never considered that possibility.
Love,
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.
The reason why I can't do that is because the mix contains cultured buttermilk. All I add is egg, a little olive oil, water, (and a dash of vanilla extract, which isn't part of the listed recipe).Zizzle wrote:so stick with your pancake mix and sub the milk!
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.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Tex,
After seeing your results, I too am worried that it's impossible to live with anyone who's not GF and be completely GF yourself. I was talking about your results last night with my family (you're a popular topic of conversation!), and suggesting to them that it might be necessary for me to change the cookware and utensils I use and the way we wash them. DH in particular was skeptical about the teflon-coated pans not being safe, but from what I've read, they're not. I am also beginning to eye my loaf pans and muffin tins with suspicion. Good grief, where does it end?? Elizabeth Hasselbeck even calls into question the silverware drawer, which can collect crumbs from the counter. I did ask my family not to use a knife to get butter for their bread, spread it, and go back for more, thereby contaminating the butter dish. You should have seen the looks I got for that one--"Mom has finally gone completely mental!"
When you publish your book, I'm buying a copy of it for my (former) GI, and also copies for my friends in the medical profession. It's really hard to argue with your position, since you are a living, breathing example of so many of the "theories" we subscribe to here. I feel so fortunate to have discovered my gluten sensitivity early, before it could have the devastating effect on my health that it has had on yours. By rights, I should have gone another 10 years or so complaining of increasingly troublesome symptoms and hearing that I had IBS before figuring out what was REALLY wrong with me. Every day I get up without stomach pain, D, nausea, fatigue and depression is miraculous! I can't believe I settled for that life before. I can't believe I thought that was normal for me, the best I could expect to feel. Thank you for taking the time to write about your experiences! You are such an intelligent, articulate, well-read gentleman, I'm proud to have you representing the Potty People to the rest of the world.
After seeing your results, I too am worried that it's impossible to live with anyone who's not GF and be completely GF yourself. I was talking about your results last night with my family (you're a popular topic of conversation!), and suggesting to them that it might be necessary for me to change the cookware and utensils I use and the way we wash them. DH in particular was skeptical about the teflon-coated pans not being safe, but from what I've read, they're not. I am also beginning to eye my loaf pans and muffin tins with suspicion. Good grief, where does it end?? Elizabeth Hasselbeck even calls into question the silverware drawer, which can collect crumbs from the counter. I did ask my family not to use a knife to get butter for their bread, spread it, and go back for more, thereby contaminating the butter dish. You should have seen the looks I got for that one--"Mom has finally gone completely mental!"
When you publish your book, I'm buying a copy of it for my (former) GI, and also copies for my friends in the medical profession. It's really hard to argue with your position, since you are a living, breathing example of so many of the "theories" we subscribe to here. I feel so fortunate to have discovered my gluten sensitivity early, before it could have the devastating effect on my health that it has had on yours. By rights, I should have gone another 10 years or so complaining of increasingly troublesome symptoms and hearing that I had IBS before figuring out what was REALLY wrong with me. Every day I get up without stomach pain, D, nausea, fatigue and depression is miraculous! I can't believe I settled for that life before. I can't believe I thought that was normal for me, the best I could expect to feel. Thank you for taking the time to write about your experiences! You are such an intelligent, articulate, well-read gentleman, I'm proud to have you representing the Potty People to the rest of the world.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Wow, Tex, I'm sorry you had those results, but glad that you have an explanation for your symptoms.
It does seem like depressing news for those of us not as far down the MC recovery path as you. Is it going to be impossible to be truly gluten-free? Or other intolerance-free? I guess we may have to accept that we will have some level of damage, and do the best that we can to keep the symptoms under control.
Love,
Martha
It does seem like depressing news for those of us not as far down the MC recovery path as you. Is it going to be impossible to be truly gluten-free? Or other intolerance-free? I guess we may have to accept that we will have some level of damage, and do the best that we can to keep the symptoms under control.
Love,
Martha
Martha
WOW! Tex, sorry for your results but knowing them may help you to resolve your other health issues. Your recent incident with restaurant food just clarifies for me to eat only the food I make. However, I still have family members that eat gluten so will always have gluten "floating" around.
I am with Polly:
Tex get that book done..............I have 3 GI's I would like to purchase a copy for their learning experience!
Love, G
I am with Polly:
I recently had a CT contrast scan of the small intestines and will find out the results tomorrow, but over the phone he indicated nothing unexpected and still believes that the colon is the main problem since the 2nd colonoscopy, as he put it, "was ugly". But, yet I could bet that a lot of my problems start with the SI. How frustrating! Oh, and I am willing to bet he wants to do another colonoscopy since it has been 2 1/2 years.how do we get the GI community to recognize that small bowel problems are an integral part of the large bowel (colitis) problems????
Tex get that book done..............I have 3 GI's I would like to purchase a copy for their learning experience!
Love, G
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Cynthia, I can remember thinking all those things about Tex within just a few days of coming here. The wealth of information is unbelievable.draperygoddess wrote:Tex,
You are such an intelligent, articulate, well-read gentleman, I'm proud to have you representing the Potty People to the rest of the world.
Tex, thank you for sharing all of your accumulated knowledge. The results from your tests were surprising. The comment you made to Polly about an experience she had with having high test results, and then going on the diet, and then getting higher (even slightly) results later from Enterolab is interesting and very likely from the way you explained it. I hope that made sense. In my "normal" world I do not have a real difficult time explaining myself. It is different here because as each day passes I realize how very little I do know. I hope you'll be able to turn this around in a short period of time.
Love,
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Remember that I'm just guessing at what is happening - I have no proof.Cynthia wrote:After seeing your results, I too am worried that it's impossible to live with anyone who's not GF and be completely GF yourself.
I sincerely appreciate the kind words, but you must have me mixed up with someone who actually knows what he or she is talking about.Cynthia and Paula wrote:You are such an intelligent, articulate, well-read gentleman, I'm proud to have you representing the Potty People to the rest of the world.
I feel exactly the same way. The more I learn about the disease, the more I realize that I/we actually know so very little about it.Paula wrote:It is different here because as each day passes I realize how very little I do know.
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.