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Celiac And Constipation


alihawk

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alihawk Rookie

Hi just wondering how many people suffered with constipation from Celiac before being diagnosed. I believe the more common is diarrhea but what about constipation how common is that.

Once being diagnosed and removing gluten from your diet did the constipation finally resolve?

Alison


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nvsmom Community Regular

It is starting to look like C is just as common as D. I think it just doesn't get talked about as much because it doesn't disrupt life as.... suddenly.  ;)

 

I had C for about 38 years.  It took close to a year on the gluten-free diet, and the proper thyroid meds, before it finally resolved.  To be honest, I thought normal was D when it first started to change.  LOL

 

For most it seems to resolve in the first year. I think most people see improvements within the first 3 months.

mamaw Community Regular

constipation is VERY common in celiac maybe even more then the BIG D.......I've been gluten-free twelve years & still have major constipation issues......

HappyMom623 Proficient

I was ALWAYS constipated. I would only go once in 7 days? Even from when I was kid. My mom always says now "I bet you had it even when you were small"

 

I've been gluten-free for several years now and still have issues with it, although not as bad as before.

alihawk Rookie

Wow that's two totally different answers! I am hoping I fall into the constipation going away category but I have battled SEVERE constipation for 20 years so I'm not real sure.

I also seem to be gaining wait even though I'm eating much healthy and better, not sure what that is about.

I have always been about 110-111lbs. I work out 4 times a week and so the only thing that has really changed is my food intake. I have always been a healthy eater but I love chocolate but now that I'm allergic to dairy that's out so why in the world am I gaining weight?

Any thoughts are appreciated.

I'm still hoping this constipation becomes a thing of the past!!!

I can dream can't I?

Alison

cyclinglady Grand Master

Have you recently had your thyroid checked? That can account for slight weight gain or constipation. Or.....your intestines are healing and you are finally absorbing everything!

Oh, my dark certified gluten-free chocolate contains no dairy!

mamaw Community Regular

You may  be  gaining  weight  because  you now  are  absorbing  the  nutrients  from the  food  you eat or   being  gluten free  doesn't always  mean  you are  eating  healthy  foods... The  gluten-free  diet  lacks  protein,  & fiber  plus  some  vitamins....the  gluten-free  diet  contains  lots  of  starches  ie:  cornstarch,  tapioca  starch,  potato  starch,  gums...not  healthy nourishing    foods.....

As  for the  constipation  issues , I too  have  had  problems  years  &  years ago...I've  tried  it  all  & done  it all & still do  but  still have  the problem.....it never  goes  away ....The  doc  calls it  chronic  constipation  without  reason.....


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alihawk Rookie

Thanks cyclinglady I have had my thyroid checked many times all good.

As for eating I have always eaten good whole foods fruits veggie meat etc so the only dietary change has been eliminating gluten soy and dairy which affect me also. In terms of caloric intake that hasn't changed either.

I work out hard always have so not sure of the weight thing.

I have had chronic constipation like I said for years so bad it turned into colonic inertia over a period of 8 years, where I would go once every 20 days. I do have slow gastric emptying also. Long story very short I had surgery to remove my entire large intestine about 2003 and still struggle with constipation, crazy I know.

Anyway can't figure out this weight gaining thing.

Thank you everyone for your thoughts and insight I appreciate every single word.

By the way this is all new just diagnosed Jan 6

Alison

cyclinglady Grand Master

Well, you could have been eating healthy, but not really absorbing it well. That was me! Ate well and ran, swam or biked six days of the week. Until my anemia was knocking me down. That was when I was diagnosed with celiac disease. A few months later I had some vertabrae fractures doing NOTHING! Yep, bones were compromised!

Try not to worry about your weight. Focus on getting well. Everything will get back to normal eventually. I am back on my bike, running and swimming again after a year of nurturing myself.

caro7 Newbie

I suffered with constipation, I still do once in a while. When I am constipated I feel very unwell.  I have to say it is less often now that I am gluten free.....Maybe it will get better after you have been gluten free a little longer, it takes a while for things to get more normal. Hope it happens soon for you.

w8in4dave Community Regular

I have also been having problems with "C" but I have also been Dx'd Fibromyalgia and that can cause "C", I have been trying to eat alot of fresh vegetables, and fruit. Nothing boxed or canned unless it's beans. I make my own tomato sauce and have been staying away from alot of starch. Seems like it goes back and forth from "D" to "C". Think theres always gunna be something!

alihawk Rookie

Thanks for everyone's thoughts and advice. I hope once things heal inside that the constipation will at least decrease.

For those that still suffer with constipation what is your fix or remedy to help.

I have been through many over the years, from chamomile tea, heating pad on stomach, eating liquids only, triphala, Miralax etc. what helps gets you through a bout of bad constipation?

bartfull Rising Star

A large serving of nuts, twice a day.

nvsmom Community Regular

Ditto. Nuts are a big help.

cap6 Enthusiast

I have been constipated since I was an infant (according to my mother!).  They called me the Constipation Kid.  Great nickname! lol  That said, my C became worse after I went g.f. and the dr was unable to explain that.  At almost 5 years I still suffer bouts of it from time to time especially if I eat much in the way of processed food.  If it's in a package then it doesn't work for me.  What keeps me going (no pun) is a daily breakfast that includes sauteed greens, kale, chard or spinach.   If I really get off track then a night or two of Smooth Move organic tea will help get things back on track. 

Chibiehotaru Newbie

Sorry to hear of your contipation. Before diagnosis I suffered from both D and C. Mine was very odd... I would go a few weeks severe D and then up to 10 days without having a bowel movement and I would cry because it was so painful. Like rocks, or something trying to come out. :( I have been gluten free nearly 8 months and with the exception of a few accidental glutens I have felt much bettee and have had almost no constipation. If anything I still have loose stool which is super annoying. I hope you feel better. I just try and take it one day at a time. :)

alihawk Rookie

Yes greens spinach sometimes apples may get things moving. I think it all depends on how backed up I am cause sometimes even the Miralax does nothing for me.

I appreciate all your remedies keep them coming. You never know when I or you may need a new one to try.

Alison

alihawk Rookie

Thank you all for your great posts and your remedies for constipation. I appreciate all your input and help.

Alison

w8in4dave Community Regular

I also have bouts of C. I try and eat Nuts and a lot of green leafy vegetables

powerofpositivethinking Community Regular

I was a big C sufferer, and when people ask me what led me to get tested for celiac it was because of the C and bloating.  For reference I'm a 29 year old female.  I was always regular and then that started changing.  My Mom tried to convince me everything was fine, but I knew something wasn't right.  It's one thing if you've been irregular all your life, but I hadn't been and I knew I needed to get it checked out.

 

I consider myself the queen of laxatives and C remedies :D   Before I knew gluten was poison to my body, I loaded up on fiber products like Fiber One and boatloads of water but nothing moved and I felt huge.  I dabbled in Dulcolax, smooth move tea, Exlax, but I knew I didn't want to take those for the long term so I kept searching.  My GP prescribed Miralax, but I knew I didn't want to take that long term either and it didn't even help me anyways.  My GP and GI kept saying more fiber, exercise and water, but it wasn't helping.  Hands down the best relief I've found is magnesium and liquid glycerin.  

 

My GI agreed to test me for celiac and I tested positive and removed gluten from my diet.  After some other tests I was diagnosed with fat malabsorption and exocrine pancreatic insufficiency, but thankfully I took Creon, and I've lost both those diagnoses.  The best C remedy I've found is magnesium.  My C got better after the celiac diagnosis, but since my pancreas was out of whack I still had bloating and occasional C problems.  I used to have to take a whole lot of magnesium to feel relief because fat malabsorption also causes you to lose magnesium.  Magnesium is important in so many bodily functions.  I take Super Magnesium from GNC.  I don't recommend anything with magnesium oxide because it's harder for your body to absorb.  

 

My vote is for magnesium and liquid glycerin.  I no longer use either of those on a regular basis.  I can't even remember the last time I used the liquid glycerin.  I will say that when I get super stressed from work around concert time, I teach elementary music, that makes the C reappear, but I take one dose of magnesium and it levels me out quickly.  The trick is to find the right dose of magnesium for you because if you take too much it causes D.  Hope this helps!

Valerie2622 Apprentice

I've had to do (in various combinations throughout the past 22 months:

 

Miralax

Dulcolax

Exlax
Fibercon
Suppositories 

 

...and I still haven't gotten an x-ray that has told me I"m all clear. Yet. 

HOWEVER:

Yoga has helped me quite a bit with getting things moving.
Massaging my belly sometimes works.

Eating breakfast helps me "go" earlier in the morning.
Try to relax your muscles while sitting on the toilet

Sit on the toilet for at least ten minutes because sometimes that tenth minute actually makes all the difference
I love dried apricots- so tasty

Fresh plums are yummy too

(I tested positive for celiac disease blood test and I have my endoscopy in two weeks)

  • 2 weeks later...
MomBTired Newbie

I have the extreme case to share. My son's constipation was so bad, he had impactions that put him in the hospital around 2 to 3 times a month for clean outs. He had a colonic manometry which showed the nerves were not functioning in his colon, so the large intestine was removed. That was 7th grade for him, he's almost 20 now and we just found out that the reason his nerves were not functioning was because he has autonomic small fiber neuropathy which can be found in people with celiac. SO, which came first? We do not know

  • 2 weeks later...
sreese68 Enthusiast

If you're still having problems with C, you may want to look into an elimination diet.  Gluten causes mild C for me (my reactions are neurological), but other foods cause it much more so.  Brown rice gives me horrible stomach pain and worst C ever.  Too much fructose and dairy causes C for me, too.  Interestingly, other foods cause D, like things in the sorbitol family.

 

I did the FODMAP elimination diet, but I had to figure out the brown rice thing on my own.  Also, brown rice didn't cause such a large reaction until I had been gluten-free a few months.

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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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