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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Severe Chronic Constipation

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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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I have suffered from constipation for over two decades while going to different gastroenterologist who would perform tests and then tell me they were normal.  I started having other severe problems including weight gain, muscle and joint pain, and stomach pain so severe I would lay down and cry.  After meeting with the gastroenterologist's PA who told me she too suffered from constipation and if she had the answer to my question (why) then she would be wealthy.  So, I stopped going to the gastroenterologist.  I know.  But, I was so frustrated with the way I was treated, and I was tired of hearing that everything was normal.  Instead, I went to a rheumatologist thinking I would concentrate first of the other symptoms of muscle and join pain,... .  She ordered a series of tests that were repeated several times and diagnosed me with Lupus, Sjogren's, and a gluten intolerance.  I have not been tested for Celiac, but I have most of the symptoms.  I fear having to return to a regular diet prior to the necessary testing for the diagnosis.  I started researching autoimmune disorders and diseases and realized that this was the new me -- conventional medicine didn't offer a cure.  So, I researched what might -- holistic medicine and cellular regenerative medicine to repair the damage.  I have just started down this path... I first had weekly colonic therapy for six weeks to clean / remove toxins from my digestive system.  I then had six days of eight hour IV NAD infusions at an out-of-state clinic.  After the first day all of my pain went away, but slowly over the course of three weeks it all returned.  One thing I didn't expect was that it cured my constipation.   I eliminate two - three times daily, and this has much improved my quality of life and as long as I stay on a gluten-free diet I do not suffer the severe stomach pain I was experiencing.  I am still researching for my cure as I refuse to accept that this is the new me -- a life of pain and exhaustion.  (I need to add that I am a somewhat demanding patient in that I refuse prescription drugs.  I want a cure -- not, a drug.)

 

Edited by Denise Jones

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57 minutes ago, Denise Jones said:

I have suffered from constipation for over two decades while going to different gastroenterologist who would perform tests and then tell me they were normal.  I started having other severe problems including weight gain, muscle and joint pain, and stomach pain so severe I would lay down and cry.  After meeting with the gastroenterologist's PA who told me she too suffered from constipation and if she had the answer to my question (why) then she would be wealthy.  So, I stopped going to the gastroenterologist.  I know.  But, I was so frustrated with the way I was treated, and I was tired of hearing that everything was normal.  Instead, I went to a rheumatologist thinking I would concentrate first of the other symptoms of muscle and join pain,... .  She ordered a series of tests that were repeated several times and diagnosed me with Lupus, Sjogren's, and a gluten intolerance.  I have not been tested for Celiac, but I have most of the symptoms.  I fear having to return to a regular diet prior to the necessary testing for the diagnosis.  I started researching autoimmune disorders and diseases and realized that this was the new me -- conventional medicine didn't offer a cure.  So, I researched what might -- holistic medicine and cellular regenerative medicine to repair the damage.  I have just started down this path... I first had weekly colonic therapy for six weeks to clean / remove toxins from my digestive system.  I then had six days of eight hour IV NAD infusions at an out-of-state clinic.  After the first day all of my pain went away, but slowly over the course of three weeks it all returned.  One thing I didn't expect was that it cured my constipation.   I eliminate two - three times daily, and this has much improved my quality of life and as long as I stay on a gluten-free diet I do not suffer the severe stomach pain I was experiencing.  I am still researching for my cure as I refuse to accept that this is the new me -- a life of pain and exhaustion.  (I need to add that I am a somewhat demanding patient in that I refuse prescription drugs.  I want a cure -- not, a drug.)

 

Welcome Denise!

Since you are already gluten free, consider reviewing our Newbie 101 thread located at top of the “Coping” section of the forum.  Browse through old threads and read the many articles that celiac.com has to offer.  They are a great resource.  Make sure you avoid cross contamination and that may mean not eating out until you have seen improvement.  

Keep in mind that celiac disease is systemic.  Besides damaging the small intestine it creates a lot of collateral damage (e.g. anemia, osteoporosis, joint pain, etc.) which often overlaps with many Autoimmune issues (you can have more than one 😟).  It take TIME to heal.  Most around here take a year or longer.  Be patient.  

Gluten intolerance?  A diagnosis?  I would really recommend getting and maintaining all your medical files.  I would be curious what the results were.  

Questions?  We can help.  

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1 hour ago, Denise Jones said:

I have suffered from constipation for over two decades while going to different gastroenterologist who would perform tests and then tell me they were normal.  I started having other severe problems including weight gain, muscle and joint pain, and stomach pain so severe I would lay down and cry.  After meeting with the gastroenterologist's PA who told me she too suffered from constipation and if she had the answer to my question (why) then she would be wealthy.  So, I stopped going to the gastroenterologist.  I know.  But, I was so frustrated with the way I was treated, and I was tired of hearing that everything was normal.  Instead, I went to a rheumatologist thinking I would concentrate first of the other symptoms of muscle and join pain,... .  She ordered a series of tests that were repeated several times and diagnosed me with Lupus, Sjogren's, and a gluten intolerance.  I have not been tested for Celiac, but I have most of the symptoms.  I fear having to return to a regular diet prior to the necessary testing for the diagnosis.  I started researching autoimmune disorders and diseases and realized that this was the new me -- conventional medicine didn't offer a cure.  So, I researched what might -- holistic medicine and cellular regenerative medicine to repair the damage.  I have just started down this path... I first had weekly colonic therapy for six weeks to clean / remove toxins from my digestive system.  I then had six days of eight hour IV NAD infusions at an out-of-state clinic.  After the first day all of my pain went away, but slowly over the course of three weeks it all returned.  One thing I didn't expect was that it cured my constipation.   I eliminate two - three times daily, and this has much improved my quality of life and as long as I stay on a gluten-free diet I do not suffer the severe stomach pain I was experiencing.  I am still researching for my cure as I refuse to accept that this is the new me -- a life of pain and exhaustion.  (I need to add that I am a somewhat demanding patient in that I refuse prescription drugs.  I want a cure -- not, a drug.)

 

Celiac might be your issue, but I can say I also have been dealing with severe constipation most of my life. I thought the days of not going and sometimes lasting up to 11 days was normal. I found it to be one of my celiac symptoms, and seems to be compounded by ulcerative colitis damage.  I can tell you what I use to manage it, for the constipation the main thing  with the aches and everything related is a magnesium deficiency. Supplementing with Magnesium Citrate from Natural Vitality as proven to be the main course I take to correct it. Start off small, 1/4 tsp dose 2-3 times a day slowly up the dose to the full dose of 2tsp 2-3times a day. I find a warm beverage (tea/juice) works best. You might need more, you find your optimal level when you can have nice easy BM within the day. (my dose is 3x the recommended dose). If you get a loose stool you either upped the dose too much or shocked your system upping it too fast.
Other tips, try doing core exercises, I do 100jumpking jacks and crutches before a meal to get my gut moving. I also take 8oz of hot aloe vera juice 60mins before breakfast to jump start my system moving. 
Low carb high fat diets help, keto with TONS of seeds, nut butters seems wot work for me, pumpkin seeds really help get me moving, flax, chia, etc are other options.

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