Hi, I have never been in a support group for MC. In fact, I've never been in any support group before. I just wanted to introduce myself and tell you about some of my experiences with MC. I was diagnosed with MC when I was 19 (I am currently 23). It all started when I went to Russia and Europe in high school and got a horrible stomach virus. After that, everytime I would eat, I would have to immediately go to the bathroom. I went to the doctor and was tested for food allergies and had a stomach ultrasound to see if I had a parasite. The doctor couldn't find anything, so concluded that I had IBS. The problem eventually got better, but after my freshman year of college, it came back with a vengeance. I went to my Dad's gastroenterologist and she decided to do a colonoscopy and an endoscopy. The colonoscopy showed that I had MC. The doctor said that I had probably gotten an infection when I was in Russia and my body continued to fight it after it had already left my body. The doctor prescribed me Entocort, which I took three times a day. I took Entocort for about 4 months, but my roommates and friends noticed a change in my mood. I would start crying and not know why I was upset. It made me really depressed and moody, so I decided to stop taking it. I was frustrated, so my mom and I decided to go see a specialist at UCLA. That doctor reassured me that the first doctor had probably misdiagnosed me because MC is very hard to diagnose and I was too young to have it. After numerous more tests (stool, barium liquid tests, live ultrasounds, etc), the UCLA doctor finally determined that I did, in fact, have MC. This doctor prescribed Sulfasalazine, which suppresses the immune system, so that my body would stop fighting itself. It was frustrating because I had lost a lot of weight and people would always ask me how I did it and I would tell them that I had a stomach disease. Then they would tell me that they wish they had one, and this was hard for me because they didn't realize how bad my symptoms were.
The Entocort definitely helped, but I decided that I couldn't take it regularly and would only take it for flare-ups. I also stopped taking the sulfasalazine because my stomach problems got better. However, just this past December, my grandfather passed away and all the stress of work, my volunteer program, his death, and trying to help my family re-inflamed my MC. I got really sick, so I went to the doctor who prescribed more Entocort and Sulfasalazine. I'm now only taking Entocort on my bad days and am trying to take the Sulfasalazine as prescribed (2 pills 2 times a day). I haven't tried any sort of food diet because I love all foods. My best friend is allergic to wheat and her mom has tried to convince me to stop eating wheat for about three years now, but I'm afraid I won't know how to eat and will lose even more weight. As I was researching more about MC, I found this support group, so decided to look into it.
Would any of you suggest a gluten free diet? Or the easiest way to go about doing one? I really like beer, would it be cheating to drink beer but give up gluten found in food? Is there anyone in their 20's with this disease besides me?
PS I have a really good sense of humor, so that explains my user name (tiny dancer is my favorite song)
PSS I really want one of those cool The Potty People Shirts!
New Member Introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Tiny Pooper
- Posts: 1
- Joined: Wed Feb 03, 2010 8:20 pm
- Location: Los Angeles
New Member Introduction
Tiny Pooper
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome! this 'family' was my first ever support group, and i dont know where i would be right now without the invaluable plenthry of information and the wonderful friendship and support these people have given me.
What you do re diet is your choice. everyone has different levels of side effects to different foods. I was diagnosed late Dec 09 and havent had a drink yet. There are days when friends are drinking that I think, I would really really love a glass of wine, then the thought of having D for a few days is enough to wipe that thought. I value D free days moreso. and my friends are estatic as i am not drinking any alcohol, i am guarenteed to be driver!
I am currently Gluten Free, Yeast Free, Lactose Free and only having mild D issues once a week at most, and this is generally when i am trying out new ingredients type thing. I am not using Entocort.
If you are eating the right foods and your body is digesting them properly then you shouldnt loose weight
the main thing i have learnt from reading posts and discussions on here, is that it is a constant thing to manage. there are good days and bad days, what works now (medication/food regime) may not work in 6 months time and varying things such as stress, colds and flu etc can greatly impact on that.
Good luck with the adjustment what ever diet changes you decide
take care
Gabes
What you do re diet is your choice. everyone has different levels of side effects to different foods. I was diagnosed late Dec 09 and havent had a drink yet. There are days when friends are drinking that I think, I would really really love a glass of wine, then the thought of having D for a few days is enough to wipe that thought. I value D free days moreso. and my friends are estatic as i am not drinking any alcohol, i am guarenteed to be driver!
I am currently Gluten Free, Yeast Free, Lactose Free and only having mild D issues once a week at most, and this is generally when i am trying out new ingredients type thing. I am not using Entocort.
If you are eating the right foods and your body is digesting them properly then you shouldnt loose weight
the main thing i have learnt from reading posts and discussions on here, is that it is a constant thing to manage. there are good days and bad days, what works now (medication/food regime) may not work in 6 months time and varying things such as stress, colds and flu etc can greatly impact on that.
Good luck with the adjustment what ever diet changes you decide
take care
Gabes
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hello Tiny,
Sorry to hear you have had so many problems. Hope we can help you deal with this rotten condition.
Many of the people here have had testing from Enterolab to confirm food sensitivities.
Most of us are sensitive to gluten, a high percentage also to dairy foods, and about half of us can't handle soy. A small number of people have additional intolerances. Many people here are able to control their MC by diet alone, and it gets much easier with practice. Before I became ill I could not imagine life without wheat and dairy products, but it is amazing how easily you adjust to most of it (yes, there is always something that is hard).
Mostly gluten free just doesn't work. Sorry. Once we become intolerant of gluten we need to avoid it completely. You could become an expert on gluten free beers (they do exist), or drink cider or wine instead. Give a dry cider a try if you haven't done so. Hits the spot nicely on a hot day.
MC does mostly hit more mature folks, but we have had children with the problems so age is no barrier. You would also find a lot of people your own age on the various gluten free boards who can help with the issues of dealing with the diet, if you go that way.
It is just as easy to gain weight on a gluten free diet as a 'normal' diet. I wish it wasn't so.
Once again, Welcome, and please feel free to ask lots of questions.
Lyn
Sorry to hear you have had so many problems. Hope we can help you deal with this rotten condition.
Many of the people here have had testing from Enterolab to confirm food sensitivities.
Most of us are sensitive to gluten, a high percentage also to dairy foods, and about half of us can't handle soy. A small number of people have additional intolerances. Many people here are able to control their MC by diet alone, and it gets much easier with practice. Before I became ill I could not imagine life without wheat and dairy products, but it is amazing how easily you adjust to most of it (yes, there is always something that is hard).
Mostly gluten free just doesn't work. Sorry. Once we become intolerant of gluten we need to avoid it completely. You could become an expert on gluten free beers (they do exist), or drink cider or wine instead. Give a dry cider a try if you haven't done so. Hits the spot nicely on a hot day.
MC does mostly hit more mature folks, but we have had children with the problems so age is no barrier. You would also find a lot of people your own age on the various gluten free boards who can help with the issues of dealing with the diet, if you go that way.
It is just as easy to gain weight on a gluten free diet as a 'normal' diet. I wish it wasn't so.
Once again, Welcome, and please feel free to ask lots of questions.
Lyn
WELCOME TINY POOPER!! 
We usually let our board administrator give the "official" welcome, but unfortunately he is in the hospital.
I'm sorry that you had to find us, but be assured that this is the most comprehensive and informative website on microscopic colitis. You've come to the right place.
Your dad's gastroenterologist sounds like she's more familiar with MC. Truthfully, most of us don't know how or why we have gotten this disease. For most of us, it came about suddenly; for others, it was a progression.
We manage our MC one of three ways. Some of us rely exclusively on medication, some manage it by diet alone, and some use a combination of both diet and medication. Entocort is commonly prescribed by GIs because it usually works quickly and effectively, but some here have had side effects from it.
I have been taking Entocort for 2 1/2 years and haven't noticed any side effects, though I did have side effects from Prednisone. The difference between the two is that Entocort is encapsulated and doesn't release until it reaches the colon. Only about 15% of it reaches the rest of the body. I haven't heard of anyone else here reporting mood changes, but perhaps someone else will post a response.
Most of us find that we need to eliminate gluten from our diet. The next most common food intolerance we have is casein (dairy). After that, about 50% of us are also soy intolerant. If you don't want to use medication, I would suggest that you first eliminate all gluten from your diet. If you don't see any immediate change, then eliminate all dairy. Many members have seen immediate improvement once they've eliminated one or both of these. Beer contains barley malt, which is a gluten product.
I'm sure you're doing a lot of reading on this site. You will have many questions as you read. Feel free to ask us anything - we are not bashful about describing our symptoms.
You will get better and you will get your life back.
Gloria
We usually let our board administrator give the "official" welcome, but unfortunately he is in the hospital.
I'm sorry that you had to find us, but be assured that this is the most comprehensive and informative website on microscopic colitis. You've come to the right place.
Sigh. I'm so sorry that the UCLA doctor discounted the first doctor's opinion based upon two erroneous conclusions. MC isn't very hard to diagnose - a biopsy is the typical way to diagnose it. The doctors that don't do a biopsy will typically give a diagnosis of IBS because they can't find any other explanation. We have many members who are young and have MC. A couple of them have even been children under age 5. The reason that more young people haven't been diagnosed is because doctors mistakenly think this is an "old person's" disease and therefore don't do the biopsy. My own GI told me that he automatically does a biopsy for any woman over 50 years old who presents with diarrhea. He doesn't do one for younger persons - I assume he tells them they have IBS. We haven't had a lot of success with GIs on this board. We usually see them so that they'll prescribe our medications, but then turn to this board for advice.That doctor reassured me that the first doctor had probably misdiagnosed me because MC is very hard to diagnose and I was too young to have it. After numerous more tests (stool, barium liquid tests, live ultrasounds, etc), the UCLA doctor finally determined that I did, in fact, have MC.
Your dad's gastroenterologist sounds like she's more familiar with MC. Truthfully, most of us don't know how or why we have gotten this disease. For most of us, it came about suddenly; for others, it was a progression.
We manage our MC one of three ways. Some of us rely exclusively on medication, some manage it by diet alone, and some use a combination of both diet and medication. Entocort is commonly prescribed by GIs because it usually works quickly and effectively, but some here have had side effects from it.
I have been taking Entocort for 2 1/2 years and haven't noticed any side effects, though I did have side effects from Prednisone. The difference between the two is that Entocort is encapsulated and doesn't release until it reaches the colon. Only about 15% of it reaches the rest of the body. I haven't heard of anyone else here reporting mood changes, but perhaps someone else will post a response.
Most of us find that we need to eliminate gluten from our diet. The next most common food intolerance we have is casein (dairy). After that, about 50% of us are also soy intolerant. If you don't want to use medication, I would suggest that you first eliminate all gluten from your diet. If you don't see any immediate change, then eliminate all dairy. Many members have seen immediate improvement once they've eliminated one or both of these. Beer contains barley malt, which is a gluten product.
I'm sure you're doing a lot of reading on this site. You will have many questions as you read. Feel free to ask us anything - we are not bashful about describing our symptoms.
You will get better and you will get your life back.
Gloria
You never know what you can do until you have to do it.
Hi Tiny, and welcome to the forum. I was diagnosed with MC last June. At first I wasn't convinced that I has gluten sensitivity because my symptoms went away, at least temorarily, when I quit all my nutritional spplements......something in them was causing problems. I had already discovered that I was dairy sensitive about 5 years earlier, and in retrospect that was my first encounter with MC. However, what I learned on the Forum made me suspect that gluten might be a problem, so I got tested and found out I was positive for gluten sensitivity. At the time I was doing pretty good digestion-wise, but I decided that I might as well go gluten free and see what happened. Well, to my suprise a number of problems I'd had for years got better. I had been bothered with asthma and a hoarse voice, and within 2 weeks my asthma was so much better and my voice had improved dramatically. Also, leg and toe cramps at night were a problem and they went away too. And my chronic fatigue lifted and I now have much more energy. As many on this forum will testify, gluten sensitivity can affect much more than your gut.
Going gluten free can seem very hard, but the payoff is certainly worth it. I would encourage you to get tested at Enterolabs. That way, if you test positive, then you know what you need to do and will be motivated. And if you aren't positive, then you know that too. All of us who have gone gluten free have had to work at the beginning to educate ourselves, but we have found workable substitutes and eat just fine at home. Of course eating out presents problems, but most restaurants are aware of food sensitivites and usually there are a few menu items available. I can't drink beer, but have found that wine is just fine. And let's not forget all the interesting mixed drinks that would be OK on a gluten-free diet. It's all a matter of attitude, and most of us have gone through the "poor me" I can't have the beer.....ice cream.....pasta....etc.... and have made the mental change. Taking control of my health and feeling good again is soooooo worth it!
Rosie
Going gluten free can seem very hard, but the payoff is certainly worth it. I would encourage you to get tested at Enterolabs. That way, if you test positive, then you know what you need to do and will be motivated. And if you aren't positive, then you know that too. All of us who have gone gluten free have had to work at the beginning to educate ourselves, but we have found workable substitutes and eat just fine at home. Of course eating out presents problems, but most restaurants are aware of food sensitivites and usually there are a few menu items available. I can't drink beer, but have found that wine is just fine. And let's not forget all the interesting mixed drinks that would be OK on a gluten-free diet. It's all a matter of attitude, and most of us have gone through the "poor me" I can't have the beer.....ice cream.....pasta....etc.... and have made the mental change. Taking control of my health and feeling good again is soooooo worth it!
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hello and Welcome!
I don't post much, but I do get on her and check old posts and have learned a ton about this disease. Way more than my GI Doc has ever informed me of. In fact, when I was diagnosed last summer he actually spelled it out for me and laughed when he said that I would probably get on-line and find more information about MC. Well, I had to do SOMETHING, he has been nice, but appears to not have a clue.
I wish the medical profession would realize that MC can hit anyone and not consider this as something that "women over 50" get. That's what I was told.
I have also learned that we need to speak up and advocate for our own health.
I hear your frustration just considering going GF. I was hesitant at first, but figured it couldn't hurt anything. I'm not going to lie, it's been hard. It's been about a month, and I have no doubt that it's helping. I still don't feel 100%, but I was sick for so long that my poor gut may need some time to heal. I'm just doing the GF for now, but may start eliminating other things down the road. Will I ever feel normal again? I truly believe that if you give this diet a try that you will feel better (in more ways than one).
I'm with Gabes, there have been several times that I have wanted a glass, or two, of wine but just can't imagine the after effects. So not worth it! Maybe someday....
Good luck to you. You can do this.
-Rebecca
I wish the medical profession would realize that MC can hit anyone and not consider this as something that "women over 50" get. That's what I was told.
I have also learned that we need to speak up and advocate for our own health.
I hear your frustration just considering going GF. I was hesitant at first, but figured it couldn't hurt anything. I'm not going to lie, it's been hard. It's been about a month, and I have no doubt that it's helping. I still don't feel 100%, but I was sick for so long that my poor gut may need some time to heal. I'm just doing the GF for now, but may start eliminating other things down the road. Will I ever feel normal again? I truly believe that if you give this diet a try that you will feel better (in more ways than one).
I'm with Gabes, there have been several times that I have wanted a glass, or two, of wine but just can't imagine the after effects. So not worth it! Maybe someday....
Good luck to you. You can do this.
-Rebecca
Dear Tiny Pooper
Its a great name you have chosen!. You already have got tons of advice and best is keep reading the posts on this board.
I am GF, DF, SF, EF, and also avoid tomatoes and legumes....one of indulgence left is I drink wine (and occasionally vodka straight with ice - do not trust the sweeteners they put in the tonic!). I may have to give up wine, but hope not to since it makes me "normal" when socializing - and I like it too! A small thing I do when I go out is take a bag of tree nuts (not peanuts) and use them to snack on while having a drink with friends.
The great thing about this board is you can say what you like:
ask questions, complain about fate, bitch (politely of course) about medical practices, pontificate about theories, search for the truth..... we will be with you all the way.
Best wishes on your journey back to remission, Ant
Its a great name you have chosen!. You already have got tons of advice and best is keep reading the posts on this board. I am GF, DF, SF, EF, and also avoid tomatoes and legumes....one of indulgence left is I drink wine (and occasionally vodka straight with ice - do not trust the sweeteners they put in the tonic!). I may have to give up wine, but hope not to since it makes me "normal" when socializing - and I like it too! A small thing I do when I go out is take a bag of tree nuts (not peanuts) and use them to snack on while having a drink with friends.
The great thing about this board is you can say what you like:
ask questions, complain about fate, bitch (politely of course) about medical practices, pontificate about theories, search for the truth..... we will be with you all the way.Best wishes on your journey back to remission, Ant
Also welcome here, very glad you found is, sorry to hear you have this disease too. Others already provided you with a lot of very useful information. I have some things to add to this, first about the entocort. I am familiar with entocort side effect. Actually I use Budenofalk but that is almost 100% the same medications. In the end of September I started with two pills a day, with immediately side effects like headache nauseous, feeling chased, strange, nervous. I called it a combination of being drunk and having a hang over together. So even when only a low dose reach the blood circulation, side effects are possible. I solved it by changing the dose to 2 pills to 1 a day and ever since it works great. I have to admit at that time I was already eating gluten free for a couple of weeks. Have you ever considered of using entocort again but than on a lower doses. This might give you less or no side effects at all. It is the most effective medication against MC
I am still using it, for 5 months already and in combination with the diet it is improving every week.
I hope the reach total remission with the diet, but that takes time.
In the beginning for sure it is not easy when you start the diet. As others were already saying, it would advice you to do the enterolab testing first. Than at least you know what all your problems are and which foods you have to avoid. Is it easy in the beginning, no!!! But with this disease what are the other options?? Staying ill or take pills and whatever you take they are all rubbish (I mean they work, but not fun to take). In the beginning I called my entocort pills (well budenofalk) those rotpillen (is Dutch for horrible pills) but over time a changed my opinion about these pills.
There are a lot of alternatives for gluten containing products to replace things like bread, cake, pasta, cereals. I stopped eating them (the glutenfree stuff)because they gave my stomach pain. I can't stand corn either. Also there can be a lot of insovalble fibers in there, causing cramps and pain in your belly. For some food you will find alternatives, other you just have to skip and find other things instead.
The most difficult one to find replacement for was my cappuccino. But even for that (thanks this group!!!) I found a solution, caffeine free coffee with almond milk. And there is milk, soy, gluten free chocolate!!!
Where you stand now, I was only 4 months ago. In the beginning, all this information, how great, can be so much al together you don't where to start and where to end. Just take your time and you will get there step by step and sooner than you expect.
I hope you will feel much better soon!!!
again welcome
harma
I am still using it, for 5 months already and in combination with the diet it is improving every week.
I hope the reach total remission with the diet, but that takes time.
In the beginning for sure it is not easy when you start the diet. As others were already saying, it would advice you to do the enterolab testing first. Than at least you know what all your problems are and which foods you have to avoid. Is it easy in the beginning, no!!! But with this disease what are the other options?? Staying ill or take pills and whatever you take they are all rubbish (I mean they work, but not fun to take). In the beginning I called my entocort pills (well budenofalk) those rotpillen (is Dutch for horrible pills) but over time a changed my opinion about these pills.
There are a lot of alternatives for gluten containing products to replace things like bread, cake, pasta, cereals. I stopped eating them (the glutenfree stuff)because they gave my stomach pain. I can't stand corn either. Also there can be a lot of insovalble fibers in there, causing cramps and pain in your belly. For some food you will find alternatives, other you just have to skip and find other things instead.
The most difficult one to find replacement for was my cappuccino. But even for that (thanks this group!!!) I found a solution, caffeine free coffee with almond milk. And there is milk, soy, gluten free chocolate!!!
Where you stand now, I was only 4 months ago. In the beginning, all this information, how great, can be so much al together you don't where to start and where to end. Just take your time and you will get there step by step and sooner than you expect.
I hope you will feel much better soon!!!
again welcome
harma
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Tiny POOPER~~~~~~ luve the name--first thing I CAN say is that one is NEVER too YOUNG to be afflicted with this disease/or any other ailment--
I hate when the word *age* is used as a *solution*!!!!
Also----I doubt that an ULTRASOUND can detect PARASITES---There is a STOOL test that detects the little buggers that nestle in ya body!!! This I also had---and when told I had parasites--I thought how GROSS~~~~ BUT was informed that everybody has some sorta *uninvited* guests hanging in~~~~
I thought that statement was ridiculous but my nurse friend said *Believe it--appears to be a natural thing??? For this I took 4 pills to rid myself of this particular parasite~~~appears whatever type of *parasite* it be--there are different meds. to kill them off!!
In my case--(MCC)--I do believe that is was caused by an idiot of a doctor who insisted I had MitroValveProlapse--thus using penicillian --for a very long time--even though my testing (which were many) showed NO MVP---but then I obeyed the orders and didnt fight back for more definition of (why the big *D*) I was so stupid~~~~
To shorten a long story---I was directed to a GI --in New York City--who gave me back my LIFE and was furious when he heard some of my stories--
Read about what each one has posted---it will open your eyes--wider than U could ever imagine---and U WILL find your way to the *wellness road*
It is a lotta TRIAL and ERROR but the results will be yours!!!!
Many good wishes--
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
TP, we're glad you found us. This is the best place in the world for information and support. Read all you can here and at www.Enterolab.com It is overwhelming, I know.
to the doctor who said you were too young to have MC.DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome, Tinypooper,
I agree with everyone else here about being tested by Enterolab. I found this place shortly after being Dx w/MC (both types) in October, after 2 years of D that was apparently set off by antibiotics, although, in retrospect, my first episode was after a very traumatic event when I was 9. This seems to be fairly common, that stress is the trigger.
Being naturally suspicious of everything, I did a lot of reading about Enterolab before I sent in for the testing. If you get the cheek swab test only it is not prohibitively expensive. I did the full spectrum test. On advice of my ND I had stopped eating gluten in August - 3 months before my diagnosis of MC - but that alone had not stopped the D. A blood test for gluten was negative in Feb. '09, as is the case most of the time, as those tests are notoriously inaccurate. Still I had major evidence of a reaction to gluten in the stool test and I tested positive for two of the "lesser" genes that predispose for GS, which means that I got one gene from each parent and my children would each have at least one
Being the youngest of 10 children, who all have had problems with autoimmune disorders (which are most often indicators of a food allergy) and whose children do as well, it is likely that this has gone beyond MY generation, as one of my daughters has a similar history as you. She got a stomach virus after she graduated college and did work abroad in Ireland. You can buy antibiotics OTC in Europe apparently, so she took meds there and was never the same. When she came home she was Dx w/IBS. She now has major reactions to most antibiotics and pain meds. She has not been genetically tested but has been GF, DF, corn and rice free for over a year and all her skin and digestive issues have disappeared. She has taken no meds and she feels great. I am 60, and have been baking since I was a kid, nobody loves baked goods more than me, but giving up gluten has been a life saver and I am not even tempted anymore, even though I still bake for my catering business. Fortunately I have no other food intolerances.
I have avoided using steroids. My principal line of healing has been L-Glutamine powder, probiotics. Vit D3 and immodium as needed and it worked amazingly fast. Do your research, there is so much good information available here. Hopefully you will find your solution. Both Entocort and sulfasalazine are drugs that scare me, I know others have had success with them, but I wasn't willing to go that route unless I had to.
Being GF means doing it 100%, if I get glutened accidentally now, I know it within 15 minutes.
Good luck.
I agree with everyone else here about being tested by Enterolab. I found this place shortly after being Dx w/MC (both types) in October, after 2 years of D that was apparently set off by antibiotics, although, in retrospect, my first episode was after a very traumatic event when I was 9. This seems to be fairly common, that stress is the trigger.
Being naturally suspicious of everything, I did a lot of reading about Enterolab before I sent in for the testing. If you get the cheek swab test only it is not prohibitively expensive. I did the full spectrum test. On advice of my ND I had stopped eating gluten in August - 3 months before my diagnosis of MC - but that alone had not stopped the D. A blood test for gluten was negative in Feb. '09, as is the case most of the time, as those tests are notoriously inaccurate. Still I had major evidence of a reaction to gluten in the stool test and I tested positive for two of the "lesser" genes that predispose for GS, which means that I got one gene from each parent and my children would each have at least one
Being the youngest of 10 children, who all have had problems with autoimmune disorders (which are most often indicators of a food allergy) and whose children do as well, it is likely that this has gone beyond MY generation, as one of my daughters has a similar history as you. She got a stomach virus after she graduated college and did work abroad in Ireland. You can buy antibiotics OTC in Europe apparently, so she took meds there and was never the same. When she came home she was Dx w/IBS. She now has major reactions to most antibiotics and pain meds. She has not been genetically tested but has been GF, DF, corn and rice free for over a year and all her skin and digestive issues have disappeared. She has taken no meds and she feels great. I am 60, and have been baking since I was a kid, nobody loves baked goods more than me, but giving up gluten has been a life saver and I am not even tempted anymore, even though I still bake for my catering business. Fortunately I have no other food intolerances.
I have avoided using steroids. My principal line of healing has been L-Glutamine powder, probiotics. Vit D3 and immodium as needed and it worked amazingly fast. Do your research, there is so much good information available here. Hopefully you will find your solution. Both Entocort and sulfasalazine are drugs that scare me, I know others have had success with them, but I wasn't willing to go that route unless I had to.
Being GF means doing it 100%, if I get glutened accidentally now, I know it within 15 minutes.
Good luck.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Hi Tiny,
I just wanted to jump in here as someone who was also diagnosed in her twenties. I began having D symptoms when I was 21, and they got worse from there. I was finally diagnosed at 26, after a series of doctor visits that sound pretty similar to yours. Thinking back, I'd had some symptoms from the time I was in high school. I'm 28 now, and still working on getting things under control, although I have gotten a significantly better since going on the GF diet. I'm also CF, SF, EF, YF, corn free, and a variety of other "frees." I've had to cut out a lot of foods, but many people are able to get better with fewer limitations. Everyone's experience is different. You're in the best place to get the best information.
Courtney
I just wanted to jump in here as someone who was also diagnosed in her twenties. I began having D symptoms when I was 21, and they got worse from there. I was finally diagnosed at 26, after a series of doctor visits that sound pretty similar to yours. Thinking back, I'd had some symptoms from the time I was in high school. I'm 28 now, and still working on getting things under control, although I have gotten a significantly better since going on the GF diet. I'm also CF, SF, EF, YF, corn free, and a variety of other "frees." I've had to cut out a lot of foods, but many people are able to get better with fewer limitations. Everyone's experience is different. You're in the best place to get the best information.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08