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Severe Chronic Constipation
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36 posts in this topic

Most doctors remain woefully undereducated with regard to Celiac Disease.  They were taught the "classic" list of symptoms -- Underweight, Diarrhea, Short Stature, Childhood Disease that many outgrow.  Sadly, many of the 300 symptoms associated with celiac disease are not on their radar.  

 

In my opinion, constipation not being a "classic" symptom of Celiac Disease is one of the primary reasons so many of us went undiagnosed for many years.  Bowel changes are the key.  Some of us have D, some C and some flip-flop back and forth -- really how many folks know exactly what a healthy bowel movement looks like if they have had abnormal movements their entire life? 

 

I was 43 and in the process of being diagnosed with Celiac Disease - speaking to one of the top Celiac doctors in the country when I had my very first frank discussion about my bowel movements.  No doctor of any specialty for over 25 years asked me the questions he did about my "poop" history.

 

I forget the actual figures, but I think the last ones I saw published were approximately 40% of those with celiac disease present with constipation -- not a "classic" symptom -- thankfully the wide array of celiac symptoms are beginning to trickle down to the medical community -- would be nice if we could assume someone trained in gastroenterology had a good understanding of our disease -- sadly this is not always the case.

 

Oops....hoping off my soapbox

 

I have been recovering for over four years and I still battle constipation regularly -- I have had improvement -- but the slow transit issue I developed over the years has yet to be completely resolved.  I am hopeful one day I will join the "regular" crowd.

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Have you heard of the specific carbohydrate diet? It's used to help heal digestive disease. I got on it and after 2 day I could notice a difference. I have a mild form of C and I'm in my 20's and I'm afraid it will get worse if I don't get it under control. I ran across this website http://pecanbread.com/p/how/coprotocol.htm . The diet she is referring to is based on Elaine Gottschall's book Breaking the Vicious Cycle and there is more information on scdlifestyle.com. I wish I knew more of what to tell you but sometimes it helps me to read people's testimonies of what worked for them and maybe it can work for someone else, too.

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Probiotics are the way to go.  I take Align once a day and my chronic constipation is cured - normal bms for the first time since I was in high school....I am 62 and was diagnosed (blood test and biopsy) with Celiac almost 2 1/2 years ago.  I buy Align  at Costco.  I am vegetarian - eating a plant-based diet other than salmon once a week and plain Greek yogurt every other day.  Much of my diet is raw.  Align has totally changed my life.

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I suffered from chronic constipation as a child but then switched to regular D as a teen and in my early 20s.

 

Over the past 2 years I've been sorting out my food intolerances (onion, garlic, peppers, sugars, casein/lactose & gluten) and when I would eat a big batch of something my body didn't like I'd get D for days - french onion soup was what tipped me off on the onions.

 

Since going gluten free 8 months ago I immediately became constipated. Initially I thought it was because I cut out all grains - but then after 5 months of terrible constipation (which seems worse to me than D) I realized that it was the gluten-free oats I was eating. I stopped eating oats and all of a sudden I was having perfect BMs.  Now, when I get accidentally 'glutened' I get constipated (along w/ all the other symptoms) -  and if I eat my 'other' intolerances, which happens much more often, I get D. 

 

For me, journaling and sorting out all the other food intolerances - including lots of healthy fruits and veg I was eating EVERY DAY - was the most important thing.

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Both my kids had to use miralax as c was their main symptom. Mour gastro told us a double or triple dose for 3 days to get everything out, then follow the dosing on the bottle for adults. It's tasteless so justbmix it in with water. If the adult dose isn't enough use a dose and a half for awhile, you can't really overdose on miralax, it's plant based, if you take too much you just get the runs, then you know you need to take a little less.

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Both my kids had to use miralax as c was their main symptom. Mour gastro told us a double or triple dose for 3 days to get everything out, then follow the dosing on the bottle for adults. It's tasteless so justbmix it in with water. If the adult dose isn't enough use a dose and a half for awhile, you can't really overdose on miralax, it's plant based, if you take too much you just get the runs, then you know you need to take a little less.

But with probiotics you can create a healthy colon environment rather than taking laxatives which does not help you other than to go to the bathroom.  I can't believe no one here takes probiotics!

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But with probiotics you can create a healthy colon environment rather than taking laxatives which does not help you other than to go to the bathroom. I can't believe no one here takes probiotics!

I took and still take them. But c due to gluten and thyroid disease can not be I cured by probiotics alone. If it could, I would have done it years ago.

My son has c. Probiotics don't fix him either. His gluten-free trial is coming....

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I too suffer with chronic C. I am not officially celiac because my doctor won't test me because I have been gluten free for over two years. I really get encouragement from your posts. My gastro doc has me taking Miralax and a drug called Amitiza. Neither work that well but after a day of bloating up from Miralax I will finally have a BM. Does anyone else get horrible bloating from taking Miralax? I get so depressed and frustrated until I go and then I get happy and feel normal until the downward spiral happens again. It's horrible. I think I am going to eat things with gluten and when I do it's worse! I do all the tricks, lemon water, magnesium and probiotics. I haven't found the magic bullet. Magnesium was my miracle cure - Milk of Magnesium and then it stopped working. Please let's keep sharing! I get helped by reading your posts. God bless us all!

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Mineral oil  3  tbsp.  daily or  at  night  before  bedtime.... They  really  don't  use  this  method  anymore  but  it works  but  can be dangerous  if  a person throws  it  up.... I still use  it  as  years ago  that  was the protocol  for babies....

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I have some sort of dysfunction where my lower colon muscles don't work. I take miralax and eat more soluable than insoluable fiber and this seems to help. I have done everything and now have just accepted it.

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I have suffered from constipation for most of my life. If it goes on for more than two days then I drink a small bottle of organic prune juice.

This works every time. I then have a normal bowel movement which is such a relief! This normally works for about two weeks and then I end up having to drink some again :))

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    • You already have an autoimmune condition which does put you at a higher likelihood of developing other conditions in the future, not necessarily celiac.  At any rate, I've been reading reports-- both research articles and anecdotal experiences from AI patients-- linking a gluten free diet with relief of symptoms, particularly a lessening of joint and muscle pain in those with RA, FMS, Lupus, and Chronic Fatigue.  So my point is, even if you don't have celiac disease, if being on a gluten free diet helps you, then stay on it.  As for the digestive issues, it may be worth seeing a GI for.  Lots of things can cause tummy troubles, not just celiac disease.
    • It is absolutely possible for non-Celiac gluten intolerance and/or gluten sensitivity to cause extreme symptoms. The difference between those and Celiac is that Celiac will cause actual small intestinal damage to the villi, while NCGI/gluten sensitivity can have extreme symptoms, there is no damage to the small intestine.  Other causes of bloating can be SIBO or small intestinal bacterial overgrowth.  The title pretty much says it all and you need antibiotics to help combat that. Basically, your small intestine's bacteria is out of whack and you have more bad bacteria than good. I know there is a test but have no experience with this. You may want to google it and read up on it and maybe ask a specialist about it too?  This is something they should be testing for anyway to figure out what is going on.  You could also have food allergies, as opposed to an intolerance like Celiac.  You can see why this is so hard to figure out sometimes! Are you sure you are completely gluten free?  This diet has a big learning curve and cross contamination is important.  Please take a look, if you already have not, at this link.  It was written by a previous member of the forum and although it is a bit lengthy, it is what you need to know about following the diet and living gluten free successfully. She did a very good job on it!  Even tiny amounts in your diet can still cause symptoms. http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ Have you been tested for vitamin deficiencies or anemia?  These could offer a clue to see whether you are malnourished or not. Many people with celiac have both deficiencies and anemia.  Between testing for these and genetic testing to see if you carry a Celiac gene might help you to rule it out if you cannot have a scope done.  But you do remember that you need to be eating gluten for the scope? 
    • Celiac disease is a tricky rascal. Just when you think you've got it under control, it sneaks up and manifests into new and often unexpected problems. At least, this is what we have found over the last decade. From contacts with others who have Celiac disease, we know we're not alone. I'm in my early thirties and find that sometimes my body acts more like that of an old man's. View the full article
    • Thank you, Gemini.   Is it possible for non-celiac gluten sensitivity or intolerance to have this severe symptoms?
      I'm on gluten free diet two weeks now and no change... What are other causes of these symptoms beside food?
    • I am trying to decipher the test and it looks to me like the Total IgA is fine.  Your number appears to be in the middle of the reference range, which would be sufficient IgA for testing.  I am in America so your country's testing is a bit different from here....I really hope I got that right!  If you have severe enough symptoms of a GI problem, some doctors here would move onto a biopsy even with negative blood results.  I think if you cannot get a full Celiac panel done, then a scope with biopsy should come next. Severe bloating has a cause and they need to rule out a food problem. There can be other causes but food is usually a big trigger. Yes, keep us updated!  We are here to help.
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