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Hello everyone,
I read the forum almost every day but rarely post. Lately, I have experienced increasingly strange issues which make me think that what I have been doing to manage my cc is no longer enough and that I may need a new game plan.
I have been gluten free for about a year and while things are not normal, they have been very manageable. I also cut out artificial sweeteners. I do very little to control cross contamination and since I cook for my gluten eating family, I am sure that I am ingesting some gluten. I accidentally ate a communion wafer about the size of an oyster cracker and had a strong reaction during Easter. I can't understand why I would react so strongly to such a small amount of gluten when I am exposed to gluten everyday. Any thoughts?
I mentioned that I have an IGA deficiency in a previous post and Polly told me that the enterolab tests may not be accurate for me so I have not been tested to find out what my other intolerances are.
My primary concerns right now are not with my digestive issues. I have been experiencing strange sensations in my feet and lower legs for a while now. They feel similar to the descriptions I have seen for RLS, but probably on the mild end of the RLS spectrum. My heels are also sore and my feet feel very stiff. I also have a twitch beneath my left eye and a slight tremor in my right pinkie finger.
I have read some posts and I am wondering if it could be a B12 or magnesium deficiency. Could it be reactions to dairy or something unrelated to cc?
One thing that is odd about me is that I have gained a lot of weight since developing cc. That seems to be the opposite of what most people experience...I'm not sure what that means if anything.
Like many of the members here, I do not have doctors who recognize that cc can cause any symptoms other than diarrhea. They also do not believe that diet plays a role in this condition so I am on my own except for the great information that I get here. So, a big thank you to everyone! You really are making a difference in people's lives.
What is happening to me?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I am one of the ones that weight gain post MC dx has been an issue.
i dont think it is directly caused by MC, moreso by other health issues to do with hormones etc. Albeit the changes i have made for the MC and histamine management plan would be the main reason for weight gain.
now that i have most of those things 'under control' and my energy levels are improving, weight loss is the next 'mission'
regarding your reaction to the communion wafer, it could be for three reasons
a) the small amounts of possible cross contamination may have reached their limit and the communion wafer set off the reaction or
b) the heightened sensitivity to gluten may be due to another trigger being active, ie dairy or soy.
c) double check the labels of the products you use to make sure there has not been an ingredient change.
the best suggestion for confirming if it is a or b - if you can spend a couple of weeks with no gluten contamination and see if that makes a difference, if things are no different then try elminating dairy for a few weeks and see if there is any change, if not, then eliminate soy and see if that makes a difference.
i figured out my intolerance of Yeast, Caesin, Soy etc via this elmination method.
hope this helps
i dont think it is directly caused by MC, moreso by other health issues to do with hormones etc. Albeit the changes i have made for the MC and histamine management plan would be the main reason for weight gain.
now that i have most of those things 'under control' and my energy levels are improving, weight loss is the next 'mission'
regarding your reaction to the communion wafer, it could be for three reasons
a) the small amounts of possible cross contamination may have reached their limit and the communion wafer set off the reaction or
b) the heightened sensitivity to gluten may be due to another trigger being active, ie dairy or soy.
c) double check the labels of the products you use to make sure there has not been an ingredient change.
the best suggestion for confirming if it is a or b - if you can spend a couple of weeks with no gluten contamination and see if that makes a difference, if things are no different then try elminating dairy for a few weeks and see if there is any change, if not, then eliminate soy and see if that makes a difference.
i figured out my intolerance of Yeast, Caesin, Soy etc via this elmination method.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Lucky,
I suspect that Gabes' explanation of your reaction to the communion wafer is right on target. If you can cook for your family, using wheat flour, and not get as sick as a dog virtually every day, you have a relatively high tolerance level for gluten, (probably well up in the hundreds of parts per million range). That stuff ends up everywhere, and you are probably ingesting a lot more than you realize. Something the size of a communion wafer is a very substantial dose. Most of us would react to roughly one-tenth of that amount, and some of us would react to one-hundredth of that amount, or less.
To add to what Gabes said, another possibility for the weight gain is hypothyroidism. MC is often associated with other autoimmune diseases, and we are roughly 7 times as likely to develop hypothyroidism, as someone in the general population. Your doctor can rule that out, (or confirm it), with a few simple blood tests.
Your peripheral symptoms could be due to a deficiency of the items that you suggested, (B-12 and/or magnesium), or even a potassium deficiency. There's also the possibility that you might be developing peripheral neuropathy. If you happen to have diabetes, peripheral neuropathy is often associated with the disease. However, (though most neurologists are unaware of it), some of us also develop peripheral neuropathy from gluten-sensitivity. I'm an example of that.
One of the problems with continuing to ingest even small amounts of gluten, (even though we may not actually be having clinical symptoms every day), is that we can continue to generate internal damage, such as peripheral neuropathy. In fact for some people, their primary symptoms are neurological, and for a small percentage of individuals, GI symptoms never even develop, but their neurological issues continue to increase. Dr. Hadjivassiliou is one of the few neurologists who actually understand this problem. He's been researching it for over 10 years, and has published many articles about it.
http://jnnp.bmj.com/content/72/5/560.full
Tex
I suspect that Gabes' explanation of your reaction to the communion wafer is right on target. If you can cook for your family, using wheat flour, and not get as sick as a dog virtually every day, you have a relatively high tolerance level for gluten, (probably well up in the hundreds of parts per million range). That stuff ends up everywhere, and you are probably ingesting a lot more than you realize. Something the size of a communion wafer is a very substantial dose. Most of us would react to roughly one-tenth of that amount, and some of us would react to one-hundredth of that amount, or less.
To add to what Gabes said, another possibility for the weight gain is hypothyroidism. MC is often associated with other autoimmune diseases, and we are roughly 7 times as likely to develop hypothyroidism, as someone in the general population. Your doctor can rule that out, (or confirm it), with a few simple blood tests.
Your peripheral symptoms could be due to a deficiency of the items that you suggested, (B-12 and/or magnesium), or even a potassium deficiency. There's also the possibility that you might be developing peripheral neuropathy. If you happen to have diabetes, peripheral neuropathy is often associated with the disease. However, (though most neurologists are unaware of it), some of us also develop peripheral neuropathy from gluten-sensitivity. I'm an example of that.
One of the problems with continuing to ingest even small amounts of gluten, (even though we may not actually be having clinical symptoms every day), is that we can continue to generate internal damage, such as peripheral neuropathy. In fact for some people, their primary symptoms are neurological, and for a small percentage of individuals, GI symptoms never even develop, but their neurological issues continue to increase. Dr. Hadjivassiliou is one of the few neurologists who actually understand this problem. He's been researching it for over 10 years, and has published many articles about it.
http://jnnp.bmj.com/content/72/5/560.full
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 Lucky! I also have Selective IgA deficiency, but didn't find out until AFTER i paid to have the Enterolab tests done. Don't bother with the tests. They won't be able to pick up IgA levels. Mine were so low on the test, they were lower than normal! (You also can not be tested for celiac ). I'm not sure if MRT can be done with people like us. I do know that my blood allergy tests ( IgE) all came back negative even though I KNOW i am allergic to shellfish.
Tex has a good idea with the hypothyroidism ( I have it - and it has a simple solution), but you also may want to talk to your doc about sending you to an endocrinologist to test your cortisol levels ( adrenal gland function). When I was talking to the nurse at Enterolab, she said that those of us who have an IgA deficiency may have a cortisol issue also. I actually have an apptn. with an endo this Wednesday. If you have the time, look up cortisol/adrenal glands and see what the symptoms are. I Believe one of the symptoms of either too much or too little cortisol production is weight gain.
On the food issue, I think the best way for us to find out what we are intolerant to is plain old elimination - like Gabes said.
Leah
Tex has a good idea with the hypothyroidism ( I have it - and it has a simple solution), but you also may want to talk to your doc about sending you to an endocrinologist to test your cortisol levels ( adrenal gland function). When I was talking to the nurse at Enterolab, she said that those of us who have an IgA deficiency may have a cortisol issue also. I actually have an apptn. with an endo this Wednesday. If you have the time, look up cortisol/adrenal glands and see what the symptoms are. I Believe one of the symptoms of either too much or too little cortisol production is weight gain.
On the food issue, I think the best way for us to find out what we are intolerant to is plain old elimination - like Gabes said.
Leah
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Lucky,
I, too, am surrounded by non-GF people at home, and it's almost impossible to avoid it altogether, but I do try to be very careful about cross-contamination and have educated my family about this. I have been able to make many of our favorite recipes GF--they don't notice the difference and it means I get to eat what everyone else is eating! Do be aware that some of the non-digestive symptoms could certainly be related to gluten intolerance. We tend to assume that "no D" is normal, without assessing other symptoms we might be having, like joint and muscle pain, skin irritation, fatigue, depression or anxiety, irritability, etc. So even though you haven't been running to the bathroom all this time, you might still be reacting to the low levels of gluten you're exposed to. I tested positive with Enterolab for gluten sensitivity, but it seems to be the underlying factor and not the main cause of my symptoms. I have much more noticeable reactions to my other food sensitivities. That said, I know I am much better since I went GF, because I can actually tell when I'm reacting to something, as opposed to being in a constant state of reaction!
I, too, am surrounded by non-GF people at home, and it's almost impossible to avoid it altogether, but I do try to be very careful about cross-contamination and have educated my family about this. I have been able to make many of our favorite recipes GF--they don't notice the difference and it means I get to eat what everyone else is eating! Do be aware that some of the non-digestive symptoms could certainly be related to gluten intolerance. We tend to assume that "no D" is normal, without assessing other symptoms we might be having, like joint and muscle pain, skin irritation, fatigue, depression or anxiety, irritability, etc. So even though you haven't been running to the bathroom all this time, you might still be reacting to the low levels of gluten you're exposed to. I tested positive with Enterolab for gluten sensitivity, but it seems to be the underlying factor and not the main cause of my symptoms. I have much more noticeable reactions to my other food sensitivities. That said, I know I am much better since I went GF, because I can actually tell when I'm reacting to something, as opposed to being in a constant state of reaction!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder