I hear you about aussie summers!! once the mango's and stone fruits appear in the stores and I can smell them my mouth waters!! (even after 10 years)
sadly i have never tolerated bananas (been allergic since childhood)
I also struggle with almond meal. I can only do baked items about 1- 2 serves a week max
I have never been an eggplant fan taste wise. the only way to know is to try, start really small serve at first (no more than 1/4 - 1/3 cup)
I was living in brissie when I was diagnosed, I then moved to Toowoomba for a couple of years before returning to the Hunter Valley in 2014.
Newbie and unsure if I have MC
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Gabes-Apg
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Re: Newbie and unsure if I have MC
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Newbie and unsure if I have MC
Tex, I forgot to mention in my original update that I did introduce those foods (yoghurt, oats etc) over 2-3 days each, hence why I deemed them safe, as I didn't have reactions in that time. The first reaction was after the blueberries in the crumble, with the almost raw oats. Do you think it could just be the fibre in the oats rather than the avenin, seeing as I'd been eating them all week well-cooked and blended and had had no issues?
Re: Newbie and unsure if I have MC
Alice,
If oats truly don't affect you, you might not have MC. Or you might just need to eat them for a longer period of time. Let me share a a story from probably 10 or 12 years ago,
I decided to do an oat challenge, as I hadn't eaten them in at least 5 years. I posted about it at the time, so it can probably be found in the archives. Anyway, I ate certified gluten-free oats for breakfast every third morning, The reason I skipped 2 days each time was because some allergists claim that a rotation diet with that pattern will prevent food sensitivity problems from developing. I continued the challenge for 6 weeks, at which point I developed watery diarrhea about three hours after eating oats one morning (which is the way I normally react to gluten). I stopped eating the oats and the diarrhea continued daily for about 6 more weeks. At that point I tried the oats again, and was rewarded with diarrhea about 3 hours later. So I've never touched oats again, since.
Tex
If oats truly don't affect you, you might not have MC. Or you might just need to eat them for a longer period of time. Let me share a a story from probably 10 or 12 years ago,
I decided to do an oat challenge, as I hadn't eaten them in at least 5 years. I posted about it at the time, so it can probably be found in the archives. Anyway, I ate certified gluten-free oats for breakfast every third morning, The reason I skipped 2 days each time was because some allergists claim that a rotation diet with that pattern will prevent food sensitivity problems from developing. I continued the challenge for 6 weeks, at which point I developed watery diarrhea about three hours after eating oats one morning (which is the way I normally react to gluten). I stopped eating the oats and the diarrhea continued daily for about 6 more weeks. At that point I tried the oats again, and was rewarded with diarrhea about 3 hours later. So I've never touched oats again, since.
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.
Re: Newbie and unsure if I have MC
Hmmm, that's interesting. I was wondering if it might be an accumulative thing. That is what it is like with me and gluten. A bit doesn't give me symptoms, but a few days straight will (note, I am obviously not consuming it at all now).
Re having or not having MC, I am seeing a specialist next week, so will see what he says. I definitely have increased lymphocytes in my colon and symptoms, but whether or not that is MC, I don't know. If it isn't, then what is it? Who knows. Perhaps any inflammation in the area causes similar symptoms.
Regarding your comment about MC and oats, are the majority of people with MC intolerant to oats? I've always been fine with them in the past.
Re having or not having MC, I am seeing a specialist next week, so will see what he says. I definitely have increased lymphocytes in my colon and symptoms, but whether or not that is MC, I don't know. If it isn't, then what is it? Who knows. Perhaps any inflammation in the area causes similar symptoms.
Regarding your comment about MC and oats, are the majority of people with MC intolerant to oats? I've always been fine with them in the past.
Re: Newbie and unsure if I have MC
If you have increased lymphocytes in the epithelia of your colon, You have MC (whether your doctors choose to call it that or not). They have a few other names for it, but it's basically MC in one form or another (there are at least a dozen different types that I'm aware of.)
Tex
Yes, based on posts of experiences here. A handful of members claim to be able to eat oats without symptoms, but I have a hunch that they probably hadn't been eating it long enough when they wrote those posts. Oats were fine for almost 60 years for me, until I began to have symptoms. When leaky gut develops, it makes big (permanent) changes in our immune systems.Alice wrote:Regarding your comment about MC and oats, are the majority of people with MC intolerant to oats? I've always been fine with them in the past.
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.
Re: Newbie and unsure if I have MC
That's what I have been assuming re the lymphocytes Tex. On the biopsy report they called it "colonic lymphocytosis". It will be interesting to see what the specialist says next week. Though I am concerned he is just going to try and throw steroids at me.
Regarding oats, my dad apparently reacts to oats, so who knows. I've honestly never eaten them as much as I did the other week. Whoops.
I'm wondering something regarding flours and more processed food. Because I can eat white rice, is it safe to say I'll be ok with white rice flour, or does the fact it is processed affect it? What if I were to mill it myself? The same goes re rice cakes made with only puffed white rice? And green banana flour?
Generally I stick to unprocessed whole foods, but I am keen to try and make some crackers one day and bread and am wondering how I may go. My sister was also telling me a book she has read about processed food (not the obvious highly processed stuff, but things we still seem healthy like plain brown rice crackers etc) and how our body doesn't recognise it as real food and therefore can't get the nutrients out of it and it becomes "anti-food" (I am totally paraphrasing here) which actually upsets our systems. What do you think about this?
Also, I thought that I was ok with plain yoghurt, as it didn't cause any pain or change in BMs, though yesterday I noticed I was really bloated and had been the day before too (I'd had some yoghurt both days). Now this could be hormonal, so I'll need to experiment more, but I am wondering if lactose/casein can do that without affecting BMs or causing pain? I used to get the same with milk 20yrs ago, so stopped drinking it then, but was ok again 10yrs later for a few years.
Regarding oats, my dad apparently reacts to oats, so who knows. I've honestly never eaten them as much as I did the other week. Whoops.
I'm wondering something regarding flours and more processed food. Because I can eat white rice, is it safe to say I'll be ok with white rice flour, or does the fact it is processed affect it? What if I were to mill it myself? The same goes re rice cakes made with only puffed white rice? And green banana flour?
Generally I stick to unprocessed whole foods, but I am keen to try and make some crackers one day and bread and am wondering how I may go. My sister was also telling me a book she has read about processed food (not the obvious highly processed stuff, but things we still seem healthy like plain brown rice crackers etc) and how our body doesn't recognise it as real food and therefore can't get the nutrients out of it and it becomes "anti-food" (I am totally paraphrasing here) which actually upsets our systems. What do you think about this?
Also, I thought that I was ok with plain yoghurt, as it didn't cause any pain or change in BMs, though yesterday I noticed I was really bloated and had been the day before too (I'd had some yoghurt both days). Now this could be hormonal, so I'll need to experiment more, but I am wondering if lactose/casein can do that without affecting BMs or causing pain? I used to get the same with milk 20yrs ago, so stopped drinking it then, but was ok again 10yrs later for a few years.
Re: Newbie and unsure if I have MC
If rice is safe, then rice flour should be safe, preferably white rice, because it has much less fiber than brown rice.
My book, Understanding Microscopic Colitis, has several pages describing some of the antinutrients that may cause issues for MC patients. I tried to copy it here, but it's a bit long, and has too many references to try to coordinate here. So I'll just just list some, without describing them, and how thy might affect us. Some examples are lectins, chitins, sprouted grains, benzoxazinoids, and amylase trypsin inhibitors. Basically, they can cause leaky gut, which is what causes all food sensitivities.
Sure, certain food sensitivities can cause bloating, without causing diarrhea. Beef causes me to react that way. But it also causes a headache the next day, and upper back pain. Casein (in all dairy products) causes osteoarthritis for me, but no digestive issues,even though I produce antibodies against casein. So I have to avoid it.
Tex
My book, Understanding Microscopic Colitis, has several pages describing some of the antinutrients that may cause issues for MC patients. I tried to copy it here, but it's a bit long, and has too many references to try to coordinate here. So I'll just just list some, without describing them, and how thy might affect us. Some examples are lectins, chitins, sprouted grains, benzoxazinoids, and amylase trypsin inhibitors. Basically, they can cause leaky gut, which is what causes all food sensitivities.
Sure, certain food sensitivities can cause bloating, without causing diarrhea. Beef causes me to react that way. But it also causes a headache the next day, and upper back pain. Casein (in all dairy products) causes osteoarthritis for me, but no digestive issues,even though I produce antibodies against casein. So I have to avoid 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.
Re: Newbie and unsure if I have MC
Thank you Wayne, I must get a copy of your book.
In relation to a food causing bloating, is that an indication that one is reacting to it and should avoid it then?
So, today I had my appointment (over the phone due to their offices being inaccessible today, which meant it was free - bonus!) with the gastroenterologist and he is convinced I have coeliacs and that the colonic lymphocytosis is as a result of untreated coeliacs. The reason he believes this is because the endoscopy I had in July 2019 showed increased white blood cells in my duodenum and then prior to the colonoscopy I had in July 2020, I was iron deficient. He said MC was rare/unlikely at my age (39) (I know from here that that isn't entirely true) and that it is more likely from coeliacs. Though at one point he said, yes I did have MC (based on the biopsy report saying "colonic lymphocytosis"), but then he said there was a crossover between the two and that because of coeliacs, nutrients aren't absorbed/digested properly in the small intestine and therefore food moves undigested into the colon where it ferments and causes issues, also drawing water into the area and causing D. I don't know....I'm not so convinced. I feel like the main reason he thinks it is Coeliacs over MS is because I told him that with diet alone I had become symptom free and he said that wouldn't happen with MC
as the "treatment" for MC was Budesonide and it wasn't caused or healed by diet. That the fact that I had become symptom free with diet alone and by going GF, would suggest it is coeliacs. Sigh. He also said that it was more likely coeliacs causing increased white blood cells in the small intestine than MC causing it. I am confused though about the sudden onset of the D I was experiencing. Is that something that could happen with CD? I was under the impression it couldn't. I have had a couple of flares this year prior to this, but they only lasted a week or so and were never D, rather just loose BMs. I put them down to IBS/stress. I've also reacted to high fibre with D in the past.
He wants to do another Coeliac test, which I don't really know why, as I told him I haven't had any gluten at all, so it'll be negative and he said he knew that, but still wanted to do it (perhaps to see for himself). I also told him I had a test done in July this year and it was negative. I also told him that I'd attempted the gluten challenge, but that after just a few days I had joint pain and my ross river symptoms had flared up (though they are all similar, so it could've been MC, Coeliac or RRV symptoms). He agreed I shouldn't do a gluten challenge and that it wasn't necessary. I asked him about the coeliac gene test and he agreed to do that, at least to exclude it. If I don't have the gene, he agreed it must then be just MC and he'd have "egg on his face". He wants me to see their dietician and then he wants to see me again in 2mths. Also, I've been tested for CD three times, but each time I've barely been having any gluten, so of course each time the test came back negative. The first one I did was in 2014 and I had only recently reduced gluten, but it was still negative. There was a slightly raised anitbody (I can't remember which one), but it was still within the "normal" range. This also led the GI to believe I may have CD.
So, I am a little confused, as I kind of wanted a confirmed diagnosis, but then again, I guess it doesn't really matter. Once I do the blood test I'll at least be able to exclude coeliacs if I don't have the gene and if I have it (likely as my mum is English and my dad is French Mauritian and he said the gene comes from Northern Europe), well I'll be avoiding gluten anyway due to the MC. Regarding seeing the dietician, I don't think I really want to, as if they believe I have coeliacs over MC, then they may try and convince me to eat things that I can't yet it. For now what I am doing is working, so I think I should just stick to that.
Regarding healing, despite feeling well and having few symptoms, I'm not really introducing many new foods yet due to my first few bad experiences and I'm ok with that most of the time, but sometimes I do worry that I will never be able to eat more freely/varied again. A friend's brother has MC and he has just stuck to a very limited diet for years and years and stories like that scare me.
I just checked the referral from the GI doc for the blood tests and he is requesting: CBE, H.Pylori serology, E/LFTs, Coeliac gene test, Iron Studies, Amylase, TFTs, CRP and Lipase.
I've just had most of these, but the Lipase and Amylase concern me, as I've read here that they can go funny during a flare anyway and I don't want him to start treating me for something else separately. :(
In relation to a food causing bloating, is that an indication that one is reacting to it and should avoid it then?
So, today I had my appointment (over the phone due to their offices being inaccessible today, which meant it was free - bonus!) with the gastroenterologist and he is convinced I have coeliacs and that the colonic lymphocytosis is as a result of untreated coeliacs. The reason he believes this is because the endoscopy I had in July 2019 showed increased white blood cells in my duodenum and then prior to the colonoscopy I had in July 2020, I was iron deficient. He said MC was rare/unlikely at my age (39) (I know from here that that isn't entirely true) and that it is more likely from coeliacs. Though at one point he said, yes I did have MC (based on the biopsy report saying "colonic lymphocytosis"), but then he said there was a crossover between the two and that because of coeliacs, nutrients aren't absorbed/digested properly in the small intestine and therefore food moves undigested into the colon where it ferments and causes issues, also drawing water into the area and causing D. I don't know....I'm not so convinced. I feel like the main reason he thinks it is Coeliacs over MS is because I told him that with diet alone I had become symptom free and he said that wouldn't happen with MC
as the "treatment" for MC was Budesonide and it wasn't caused or healed by diet. That the fact that I had become symptom free with diet alone and by going GF, would suggest it is coeliacs. Sigh. He also said that it was more likely coeliacs causing increased white blood cells in the small intestine than MC causing it. I am confused though about the sudden onset of the D I was experiencing. Is that something that could happen with CD? I was under the impression it couldn't. I have had a couple of flares this year prior to this, but they only lasted a week or so and were never D, rather just loose BMs. I put them down to IBS/stress. I've also reacted to high fibre with D in the past. He wants to do another Coeliac test, which I don't really know why, as I told him I haven't had any gluten at all, so it'll be negative and he said he knew that, but still wanted to do it (perhaps to see for himself). I also told him I had a test done in July this year and it was negative. I also told him that I'd attempted the gluten challenge, but that after just a few days I had joint pain and my ross river symptoms had flared up (though they are all similar, so it could've been MC, Coeliac or RRV symptoms). He agreed I shouldn't do a gluten challenge and that it wasn't necessary. I asked him about the coeliac gene test and he agreed to do that, at least to exclude it. If I don't have the gene, he agreed it must then be just MC and he'd have "egg on his face". He wants me to see their dietician and then he wants to see me again in 2mths. Also, I've been tested for CD three times, but each time I've barely been having any gluten, so of course each time the test came back negative. The first one I did was in 2014 and I had only recently reduced gluten, but it was still negative. There was a slightly raised anitbody (I can't remember which one), but it was still within the "normal" range. This also led the GI to believe I may have CD.
So, I am a little confused, as I kind of wanted a confirmed diagnosis, but then again, I guess it doesn't really matter. Once I do the blood test I'll at least be able to exclude coeliacs if I don't have the gene and if I have it (likely as my mum is English and my dad is French Mauritian and he said the gene comes from Northern Europe), well I'll be avoiding gluten anyway due to the MC. Regarding seeing the dietician, I don't think I really want to, as if they believe I have coeliacs over MC, then they may try and convince me to eat things that I can't yet it. For now what I am doing is working, so I think I should just stick to that.
Regarding healing, despite feeling well and having few symptoms, I'm not really introducing many new foods yet due to my first few bad experiences and I'm ok with that most of the time, but sometimes I do worry that I will never be able to eat more freely/varied again. A friend's brother has MC and he has just stuck to a very limited diet for years and years and stories like that scare me.
I just checked the referral from the GI doc for the blood tests and he is requesting: CBE, H.Pylori serology, E/LFTs, Coeliac gene test, Iron Studies, Amylase, TFTs, CRP and Lipase.
I've just had most of these, but the Lipase and Amylase concern me, as I've read here that they can go funny during a flare anyway and I don't want him to start treating me for something else separately. :(
Re: Newbie and unsure if I have MC
This study would indicate that I am actually at higher risk of having CD and MC (as I am almost 40 and female):
https://onlinelibrary.wiley.com/doi/pdf ... 11.04666.x
https://onlinelibrary.wiley.com/doi/pdf ... 11.04666.x
Re: Newbie and unsure if I have MC
Hi Alice,
Your gastroenterologist sounds as though he is head and shoulders above about 99 % of his peers, regarding his familiarity with MC. Especially in his recognizing that having you do a gluten challenge would be pointless. Kudos to him. Most GI docs in the world prefer to punish their patients anyway, despite the fact that it would be pointless for the patients to do a gluten challenge. He may be right (that you're a coeliac), because there's a big overlap between coeliac disease and MC. If you have a copy of the HLA-DQ2 or the HLA-DQ8 gene, you almost surely are a coeliac. If you don't have either of those genes, then the odds of you being a coeliac are very low.
The primary differences between coeliac disease and MC are:
I hope this helps.
Tex
Your gastroenterologist sounds as though he is head and shoulders above about 99 % of his peers, regarding his familiarity with MC. Especially in his recognizing that having you do a gluten challenge would be pointless. Kudos to him. Most GI docs in the world prefer to punish their patients anyway, despite the fact that it would be pointless for the patients to do a gluten challenge. He may be right (that you're a coeliac), because there's a big overlap between coeliac disease and MC. If you have a copy of the HLA-DQ2 or the HLA-DQ8 gene, you almost surely are a coeliac. If you don't have either of those genes, then the odds of you being a coeliac are very low.
The primary differences between coeliac disease and MC are:
- With coeliac disease, the extent of the damage to the villa of the small intestine is greater. On a Marsh scale, that damage due to coeliac disease can go up to a IV, whereas, with MC it almost always stops at I
With coeliac disease, gluten is the only food sensitivity, MC usually has multiple food sensitives
If you have MC, the fact that you might also have coeliac disease is a moot point, because the dietary treatment for MC will also resolve coeliac disease
There may be other, trivial differences, but these are the main points
Bloating is a result of the gas generated by bacteria as they decompose (spoil) food in the digestive system, due to that food being only partially digested. It's a result of a reaction, but not necessarily a reaction due to that particular food. Reactions trigger reduced enzyme production (in the small intestine), and that often causes incomplete digestion of certain carbohydrates (especially grains).Alice wrote:In relation to a food causing bloating, is that an indication that one is reacting to it and should avoid it then?
I hope this helps.
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.
Re: Newbie and unsure if I have MC
"Your gastroenterologist sounds as though he is head and shoulders above about 99 % of his peers, regarding his familiarity with MC."
Well, that's good to hear. Yes, he said that I am obviously reacting to it, so definitely don't try it, though I think that is because he believes I have coeliac and not MC. You can get increased white blood cells in the small intestines due to MC too right? He also said that even it I don't have CD, I'm definitely sensitive to gluten, which is obvious for me, but even only just a few years ago Drs wouldn't say that. Gluten sensitivity has recently officially been recognised as a real condition here in Australia though amongst GI docs, which is great.
I bought some goat's yogurt to try over the normal yoghurt.
Do you think it is worth my while seeing the dietician?
Well, that's good to hear. Yes, he said that I am obviously reacting to it, so definitely don't try it, though I think that is because he believes I have coeliac and not MC. You can get increased white blood cells in the small intestines due to MC too right? He also said that even it I don't have CD, I'm definitely sensitive to gluten, which is obvious for me, but even only just a few years ago Drs wouldn't say that. Gluten sensitivity has recently officially been recognised as a real condition here in Australia though amongst GI docs, which is great.
I bought some goat's yogurt to try over the normal yoghurt.
Do you think it is worth my while seeing the dietician?
Re: Newbie and unsure if I have MC
Yes, that's correct. There are many medical research articles that verify small intestinal inflammation for most MC patients.Alice wrote:You can get increased white blood cells in the small intestines due to MC too right?
U. S. gastroenterologists are not quite ready to admit the existence of non-celiac gluten sensitivity, even though some of them are aware that Australian researchers proved that several years ago.
I would be very surprised if the dietician's advice would be beneficial, unless she/he is fully on board with all the possible food sensitivities for MC. In the U. S., I'm aware of only one dietician who actually understands MC, and that's because she has MC and she's a member of this board. Unfortunately though, she retired from being a dietician several years ago and decided to become a marriage counselor because it pays so much better. So she no longer posts.
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.
Re: Newbie and unsure if I have MC
Hi there.
I've just posted a separate message, so sorry if there is an overlap, but I'm just feeling quite down by this all at the moment. It seems that every time I introduce new foods (slowly and in a safe way), I am fine for the three day period and even longer, but then a few days after that I start getting abdominal pain and tiredness, achiness. It has happened with almost everything I've tried and so I end up back on my safe foods (carrot, sweet potato, red potato, purple potato, pumpkin, white rice, beef, pork, chicken, lamb, white fish, stewed apple, banana, almond milk, peppermint tea, rooibos tea and a night tea blend, oh and bone broth, which I keep forgetting to eat).
I've been on the diet now for 8 weeks and I responded to it within days. I started introducing new foods at around 4wks. So far, only cooked egg, pineapple (strangely enough) and broccolini are now safe too (oh and one small square of a dairy free, soy free, gluten free dark chocolate that I can have ocassionally). I've tried purple sweet potato and have been fine, but this morning I've got quite a bit of pain and had some semi-formed BM at the end of a formed BM, so think it may be the purple sweet potato, or that I ate too much of it. I've also been ok with cherries, but again, due to this morning I am now not so sure, or perhaps it is again a quantity thing. I've also tried peeled zucchini and didn't react in 3 days, but again, due to recent pain I am now not sure. How can I know what is triggering me if nothing triggers me in the three day trial period? If I introduce 3 foods over the course of 10 days and then have symptoms on day 12, for example, what has caused it?! Or is it something beside food? For instance, yesterday I suddenly got a flare up of Ross River Virus, with pain in a joint in my back. I've also been very tired and stressed with all three kids at home every day, while I try to fit in my work and with my husband working a lot too. With so many variables, I just get overwhelmed. How do I know what has caused what. Should I spread it out to only one new food every 7 days?
The constant back and forth, which feels like a very slow game of snakes and ladders, with more snakes than ladders, is really getting me down. Also, when I read here of people still only on safe foods years later (and a friend's brother is still only on safe foods 10yrs on) I get really scared and down at the prospect of never being able to eat a varied diet again. I know that my diet is much more varied than many, but I'd really like to be able to have more vegetables, particularly of the green, less-starchy variety, as I am a bit concerned about consuming such a high-starch diet. A few more fruits would be lovely too.
Am I just expecting too much too soon? I suppose that because the D improved so quickly once I started Loperamide and then the diet brought on perfect Normans within days, I assumed that I'd be able to move through this quite quickly, but it doesn't seem to be the case. I also feel like my family and friends think that this is all in my head and I'm being a hypochondriac, "creating" a complicated diet to heal something that only I think I have (because the GI wasn't clear cut about it). They also keep saying I should be seeking the help of medical practitioners rather than following the advice of people on a "forum", which really annoys me, as I know the advice I'm getting here far exceeds what I'd get from a dietician or GI doc.
On another note, I have the gene for Coeliac, though I'm not sure which one, or if both, as I haven't seen the actual report yet. Though I have been told (and have read) that this doesn't mean that I definitely have coeliacs. The GI doc did say though that he'd be inclined to diagnose me as such if I did have the gene, based on the damage I have to my duodenum and colon.
Alice
I've just posted a separate message, so sorry if there is an overlap, but I'm just feeling quite down by this all at the moment. It seems that every time I introduce new foods (slowly and in a safe way), I am fine for the three day period and even longer, but then a few days after that I start getting abdominal pain and tiredness, achiness. It has happened with almost everything I've tried and so I end up back on my safe foods (carrot, sweet potato, red potato, purple potato, pumpkin, white rice, beef, pork, chicken, lamb, white fish, stewed apple, banana, almond milk, peppermint tea, rooibos tea and a night tea blend, oh and bone broth, which I keep forgetting to eat).
I've been on the diet now for 8 weeks and I responded to it within days. I started introducing new foods at around 4wks. So far, only cooked egg, pineapple (strangely enough) and broccolini are now safe too (oh and one small square of a dairy free, soy free, gluten free dark chocolate that I can have ocassionally). I've tried purple sweet potato and have been fine, but this morning I've got quite a bit of pain and had some semi-formed BM at the end of a formed BM, so think it may be the purple sweet potato, or that I ate too much of it. I've also been ok with cherries, but again, due to this morning I am now not so sure, or perhaps it is again a quantity thing. I've also tried peeled zucchini and didn't react in 3 days, but again, due to recent pain I am now not sure. How can I know what is triggering me if nothing triggers me in the three day trial period? If I introduce 3 foods over the course of 10 days and then have symptoms on day 12, for example, what has caused it?! Or is it something beside food? For instance, yesterday I suddenly got a flare up of Ross River Virus, with pain in a joint in my back. I've also been very tired and stressed with all three kids at home every day, while I try to fit in my work and with my husband working a lot too. With so many variables, I just get overwhelmed. How do I know what has caused what. Should I spread it out to only one new food every 7 days?
The constant back and forth, which feels like a very slow game of snakes and ladders, with more snakes than ladders, is really getting me down. Also, when I read here of people still only on safe foods years later (and a friend's brother is still only on safe foods 10yrs on) I get really scared and down at the prospect of never being able to eat a varied diet again. I know that my diet is much more varied than many, but I'd really like to be able to have more vegetables, particularly of the green, less-starchy variety, as I am a bit concerned about consuming such a high-starch diet. A few more fruits would be lovely too.
Am I just expecting too much too soon? I suppose that because the D improved so quickly once I started Loperamide and then the diet brought on perfect Normans within days, I assumed that I'd be able to move through this quite quickly, but it doesn't seem to be the case. I also feel like my family and friends think that this is all in my head and I'm being a hypochondriac, "creating" a complicated diet to heal something that only I think I have (because the GI wasn't clear cut about it). They also keep saying I should be seeking the help of medical practitioners rather than following the advice of people on a "forum", which really annoys me, as I know the advice I'm getting here far exceeds what I'd get from a dietician or GI doc.
On another note, I have the gene for Coeliac, though I'm not sure which one, or if both, as I haven't seen the actual report yet. Though I have been told (and have read) that this doesn't mean that I definitely have coeliacs. The GI doc did say though that he'd be inclined to diagnose me as such if I did have the gene, based on the damage I have to my duodenum and colon.
Alice
Re: Newbie and unsure if I have MC
Hello Alice,
Successfully controlling this disease requires a lot of patience and perseverance. Since most of us are type "A" overachievers, you're not alone in finding MC to be cruel and unforgiving. But we really don't have a choice — if we want to get our lives back, we have to do what we have to do. The alternative is to learn to live with the symptoms, which is not very appealing to most of us.
I get the impression that you're trying to add foods way too soon. After my GI doc told me that there was nothing more that he could do for me, I decided to cut out gluten, and keep a journal as I experimented to discover which foods were causing me to react. It took me a year-and-a-half to reach remission. Then it took me another year-and-a-half before I managed to successfully begin adding a few foods to my diet. I had no one to guide me back then (so I had no rules to follow). I kept trying to add a food every few months, and when I would fail, I'd wait a few more months before trying again.
Your GI doctor sounds refreshingly candid and open-minded. Over here, most gastroenterologists go strictly by the book, and they rarely volunteer any information such as your's did, to the patient.
Tex
Successfully controlling this disease requires a lot of patience and perseverance. Since most of us are type "A" overachievers, you're not alone in finding MC to be cruel and unforgiving. But we really don't have a choice — if we want to get our lives back, we have to do what we have to do. The alternative is to learn to live with the symptoms, which is not very appealing to most of us.
I get the impression that you're trying to add foods way too soon. After my GI doc told me that there was nothing more that he could do for me, I decided to cut out gluten, and keep a journal as I experimented to discover which foods were causing me to react. It took me a year-and-a-half to reach remission. Then it took me another year-and-a-half before I managed to successfully begin adding a few foods to my diet. I had no one to guide me back then (so I had no rules to follow). I kept trying to add a food every few months, and when I would fail, I'd wait a few more months before trying again.
Your GI doctor sounds refreshingly candid and open-minded. Over here, most gastroenterologists go strictly by the book, and they rarely volunteer any information such as your's did, to the patient.
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.