Vegan, new diagnosis and feeling overwhelmed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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christine08003
- Posts: 2
- Joined: Tue Mar 20, 2018 10:12 am
- Location: NJ
Vegan, new diagnosis and feeling overwhelmed
I'm trying to find dietary info that might be helpful for me as I was just diagnosed with CC. My gastro just called with my biopsy results and told me to take Peptobismal as that may help but that was it as far as info. He did say that I don't have celiac. My mother had celiac from birth so I'm wondering if I am still gluten sensitive. I don't want to be gluten sensitive! The other thing is I am vegan and everything I am reading says that I have to eat low fiber BUT my diet is very high fiber, I eat a lot of beans and soy. What the hell?! I want to incorporate dietary changes immediately to see if I can get this under control. I maybe need a vegan dietician to help, I just don't know. Is there a site that can help me figure out my diet? Any guidance would be greatly appreciated!
Be Kind Be Vegan <3
Hi Christine,
Welcome to the group. I can understand your quandary. This disease is not very kind to anyone, and it is especially unkind to vegans. Here's why:
Extra protein is needed in order to heal the damage caused by the inflammation associated with the disease. When the genes that predispose to MC/CL/LC are triggered, the genes that predisposed to gluten sensitivity are also triggered, That causes intestinal permeability (leaky gut), which opens the door to all sorts of additional food sensitivities. As a result, most of us not everyone) are also sensitive to soy. And sensitivity to soy usually includes sensitivity to most or all legumes, leaving vegans without a practical source option for protein.
So how in the world does your doctor know that you don't have celiac disease? Physicians only have the ability to diagnose a percentage of mature cases (cases that have been developing for many years). Did you know that according to research, from the first onset of symptoms, it still takes an average of over 9 years to get a celiac diagnosis in the U.S. Physicians have no approved tests available for detecting celiac disease before the small intestinal damage is severe (a Marsh 3 level of damage). Consequently, they can diagnose celiac disease, but when a test result is negative they cannot honestly say that the negative result rules out celiac disease. And they have no tests available to allow them to rule out non-celiac gluten sensitivity.
The bad news is that virtually all of us here are gluten sensitive. We don't like it either, but we don't have any say-so in the matter. It is what it is.
Unfortunately, if there are any dietitians who understand CC/LC/MC, we haven't been able to find them, and doctors don't understand it either, so we are on our own. That's why we're here. We can't get the help we need from the medical profession so we share information on what works and what doesn't. We have many, many members who are or were vegans or vegetarians. We'll try to help you with your diet in any way we can, but if it turns out that you are sensitive to soy, the protein options will almost surely be a problem.
At any rate, we're here to help. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I can understand your quandary. This disease is not very kind to anyone, and it is especially unkind to vegans. Here's why:
Extra protein is needed in order to heal the damage caused by the inflammation associated with the disease. When the genes that predispose to MC/CL/LC are triggered, the genes that predisposed to gluten sensitivity are also triggered, That causes intestinal permeability (leaky gut), which opens the door to all sorts of additional food sensitivities. As a result, most of us not everyone) are also sensitive to soy. And sensitivity to soy usually includes sensitivity to most or all legumes, leaving vegans without a practical source option for protein.
So how in the world does your doctor know that you don't have celiac disease? Physicians only have the ability to diagnose a percentage of mature cases (cases that have been developing for many years). Did you know that according to research, from the first onset of symptoms, it still takes an average of over 9 years to get a celiac diagnosis in the U.S. Physicians have no approved tests available for detecting celiac disease before the small intestinal damage is severe (a Marsh 3 level of damage). Consequently, they can diagnose celiac disease, but when a test result is negative they cannot honestly say that the negative result rules out celiac disease. And they have no tests available to allow them to rule out non-celiac gluten sensitivity.
The bad news is that virtually all of us here are gluten sensitive. We don't like it either, but we don't have any say-so in the matter. It is what it is.
Unfortunately, if there are any dietitians who understand CC/LC/MC, we haven't been able to find them, and doctors don't understand it either, so we are on our own. That's why we're here. We can't get the help we need from the medical profession so we share information on what works and what doesn't. We have many, many members who are or were vegans or vegetarians. We'll try to help you with your diet in any way we can, but if it turns out that you are sensitive to soy, the protein options will almost surely be a problem.
At any rate, we're here to help. Again, welcome aboard, and please feel free to ask anything.
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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christine08003
- Posts: 2
- Joined: Tue Mar 20, 2018 10:12 am
- Location: NJ
Hi Tex, thank you for your response!
My doctor did a biopsy and said it came back as negative for celiac.
I'm vegan for ethical reasons as well as for my health. It has truly changed my life as I've had 4 heart attacks and open heart surgery but being vegan has changed my cholesterol and made my heart happy.
Ill have to work it out. How do I find out if I am allergic to soy? I found some info on this site about having a test: Panel A2: Gluten/Antigenic Food Sensitivity Stool/Gene Panel - $369
Tests for immunologic reaction to the four primary individual food antigens
(Gluten, Milk, Egg, Soy) and includes a discounted gene test for understanding genetic
predisposition to gluten sensitivity and celiac disease
Its a pricey test!
Is there a name to the diet that one should try to follow when being diagnosed with this disease?
My doctor did a biopsy and said it came back as negative for celiac.
I'm vegan for ethical reasons as well as for my health. It has truly changed my life as I've had 4 heart attacks and open heart surgery but being vegan has changed my cholesterol and made my heart happy.
Ill have to work it out. How do I find out if I am allergic to soy? I found some info on this site about having a test: Panel A2: Gluten/Antigenic Food Sensitivity Stool/Gene Panel - $369
Tests for immunologic reaction to the four primary individual food antigens
(Gluten, Milk, Egg, Soy) and includes a discounted gene test for understanding genetic
predisposition to gluten sensitivity and celiac disease
Its a pricey test!
Is there a name to the diet that one should try to follow when being diagnosed with this disease?
Be Kind Be Vegan <3
Hi Christine,
I hear you about the cholesterol. I had a stroke almost a year ago. Avorstatin knocked my LDL level from 168 to 72 in 78 days (without any diet changes).
Consider the A2 test panel to be probably the most important investment in your health that you will be making anytime soon. It will resolve any questions about whether or not you are sensitive to those foods. Most of us consider the money we spend on our EnteroLab tests to be some of the best investments we will ever make.
With a small intestinal biopsy, you might not qualify for a celiac diagnosis today, but 3 months from now the diagnosis might be positive. The gene test will tell you whether or not you have a celiac gene. Without a celiac gene you cannot have celiac disease. With a celiac gene and CC, you are about 50 times as likely to develop celiac disease as someone in the general population. But that's kind of a moot point anyway, because with a CC diagnosis, the treatment covers gluten-free. Treating celiac disease is a walk in the park compared with treating CC.
Most of us follow a modified paleo diet, but everyone has to design their own diet to meet their specific needs. We have to avoid most of the fruit and fiber, and all of the raw vegetables that are commonly included in a paleo diet.
Tex
I hear you about the cholesterol. I had a stroke almost a year ago. Avorstatin knocked my LDL level from 168 to 72 in 78 days (without any diet changes).
Consider the A2 test panel to be probably the most important investment in your health that you will be making anytime soon. It will resolve any questions about whether or not you are sensitive to those foods. Most of us consider the money we spend on our EnteroLab tests to be some of the best investments we will ever make.
With a small intestinal biopsy, you might not qualify for a celiac diagnosis today, but 3 months from now the diagnosis might be positive. The gene test will tell you whether or not you have a celiac gene. Without a celiac gene you cannot have celiac disease. With a celiac gene and CC, you are about 50 times as likely to develop celiac disease as someone in the general population. But that's kind of a moot point anyway, because with a CC diagnosis, the treatment covers gluten-free. Treating celiac disease is a walk in the park compared with treating CC.
Most of us follow a modified paleo diet, but everyone has to design their own diet to meet their specific needs. We have to avoid most of the fruit and fiber, and all of the raw vegetables that are commonly included in a paleo diet.
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 Mel,
As you probably know, if you followed a vegan diet for very many years you may need to take a B-12 supplement because plants do not contain a usable form of B-12. But outside of that difference, as far as I am aware you have about the same probabilities of being sensitive to any particular food as anyone not following a vegan diet.
Based on a random sampling of test results for members (who did not have selective IgA deficiency), the probabilities of being sensitive to gluten, casein, soy, and eggs are approximately 100 %, 81%, 81 %, and 72 %, respectively. Sensitivity to the other grains varies all over the place, with corn sensitivity being the second most common (but way less than wheat), and sensitivity to rice being uncommon.
I hope this is helpful.
Tex
As you probably know, if you followed a vegan diet for very many years you may need to take a B-12 supplement because plants do not contain a usable form of B-12. But outside of that difference, as far as I am aware you have about the same probabilities of being sensitive to any particular food as anyone not following a vegan diet.
Based on a random sampling of test results for members (who did not have selective IgA deficiency), the probabilities of being sensitive to gluten, casein, soy, and eggs are approximately 100 %, 81%, 81 %, and 72 %, respectively. Sensitivity to the other grains varies all over the place, with corn sensitivity being the second most common (but way less than wheat), and sensitivity to rice being uncommon.
I hope this is helpful.
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.