Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Belly Or Just Fat?
0

7 posts in this topic

Hi Everyone,

I'm just curious as to your opinion as to the nature of my abdominal discomfort/bloat/visible distension.

Basis stats

Age: 29 years old

Height: 6'2''

Weight: 173 lbs

Celiac History

1) Experienced abdominal discomfort/bloat/visible distension & constipation for years until via high antibodies and biopsy confirmed celiac disease at age 25

2) Went on a strict gluten free diet for 2 years. Only my constipation moderately decreased which never really bothered me. I ultimately completely lost my appetite from being gluten-free and went off the gluten free diet a few months later after losing lots of weight (I understand there's an increased risk of cancer, etc. when going back to gluten, but that doesn't really concern me actually).

3) I take miralax everyday which largely treats the constipation but doesn't really affect the abdominal discomfort/bloat/visible distension which bothers me very much. As a result of this distension, even though everyone thinks I'm very thin, I can't really wear a belt tight at all and need to wear loose clothing all the time or I would indeed get much more constipated and uncomfortable.

4) I also have some degree of urinary incontinence which I think is related to some element of muscle weakness from this bloating/distension as it's difficult to really empty my bladder

My questions

1) Do other celiacs out there have a symptom pattern like this?

2) Do others think this is just fat?

3) If it were just fat, would it really be that uncomfortable to wear even a slightly tight belt? (I can't imagine fat people are in extreme discomfort most of their waking hours when wearing a belt)

I know many will likely respond with "you really should be gluten free" and/or "you weren't gluten free enough". All I know is that being gluten free made me feel worse and that I researched the contents of everything I put in my mouth for 2 years which largely meant I didn't out at restaurants except those which specifically catered to celiacs. If I would need to be stricter than that, I'd just as soon need to wear a respirator outside for fear of inhaling a tiny gluten particle when walking near a bakery. That's not a life, it's a recipe for depression.

thanks guys

I've put a few links to pictures of my gut and a little video if you care to look.

Pics:

imgur.com/2WC1k.jpg

imgur.com/ccj87.jpg

imgur.com/k8FrA.jpg

imgur.com/ulZJr.jpg

Video:

vimeo.com/11252511

0

Share this post


Link to post
Share on other sites


Ads by Google:

So gluten-free didn't help with the bloating one way or the other? Were you tested for lactose intolerance? It could also be fructose malabsorption.

Funny you say the gluten-free diet is a recipe for depression. Gluten makes me depressed! I do think you need to do a little more research about untreated celiac before you decide to go back to consuming gluten.

0

Share this post


Link to post
Share on other sites

You really need to get back on the diet. IMHO yes you have the 'celiac' belly. It is easier now than ever to eat gluten free. Many restaurants are getting into gluten free menus. What were you eating for the 2 years you were gluten free? Fresh whole foods are going to be safest. If you don't know how to cook and that was a downfall, as it was for my son, learn to cook. Some stuff is really easy like tossing a chicken in the oven with a couple potatoes, steak and potatoes and rice is easy. Most rice cookers and crock pots come with recipes and if you need help we are here to give it to you.

Do you live near a Wegmans? If you do all their gluten-free food is labeled with a circle G.

Your not doing yourself any favors by going off the diet. You incontinence issues could be a sign that your nervous system and brain are being effected. You are young and this damage could be repaired but you really don't want the incontinence issues to end up so bad it also effects the bowels. Wearing a diaper at a young age is not going to be fun. Your also risking damage to your other organs like your gallbladder, liver and brain.

We are here to give you any support you may need. Please get back on the diet as celiac is nothing to ignore. Ignoreing it can even be deadly.

0

Share this post


Link to post
Share on other sites

In my case gluten caused a lot of bloating. When I went on the gluten free diet I was able to wear smaller sizes without losing any weight. My belly became a lot smaller. Things that were in my closet from long ago fit again. Also I could wear tighter things without it bothering me. Gluten can also cause urinary incontinence. With me, the longer I was on gluten the greater my reaction to it became and the sicker I got. In my case, the symptoms are so bad that I would not consider eating gluten again. When I get glutened accidentally it is ugly. The longer you are back on gluten the more likely it is that will happen to you. In my mind pooping all over the place now is worse than possible cancer in the future. I do wish that I could eat out sometimes. I have found it to not be worth the risk.

0

Share this post


Link to post
Share on other sites

Almost immediately- or so it seemed- after going gluten free- everyone started commenting on how much weight I was losing. I was still too tired to exercise- so it wasn't really weight I was losing- it was the bloat. I am able to wear clothes that previously felt like I was being suffocated whilst wearing.

Even my face is thinner. My rings aren't so tight. The sleeves of my sweaters hang loose. I was bloated everywhere.

I hope you will at least consider going gluten free again. The long term effects are really unpleasant and can be seriously debilitating. Everything from losing friends, jobs, the ability to walk or think clearly, etc. The list goes on and on.

Best of luck to you.

0

Share this post


Link to post
Share on other sites




2 thoughts. I lost a full shoe size after going gluten free due to the bloat. (At the same time, I gained 20 lbs and people kept commenting on how thin I was looking). Also, I too experienced mild urinary incontinence that was getting worse. It stopped almost immediately after going gluten free. I'm guessing it was muscle weakness and more importantly, nerve damage. The hernia that occurred from muscle weakness didn't repair itself :( Prior to diagnosis, I was 5'7" and 120 lbs, a size 6-8 and someone stopped me to congratulate me on my pregnancy. Nope, not pregnant, just bloated. I didn't feel gassy though.

If you were getting cross contamination before, that could have made you feel worse. I also suspect that if you continue eating gluten, there will come a year that you will feel so crummy that you discover you feel better gluten free. Hopefully, you won't have permanant damage done by that point. I still slur my words and have word finding issues at least 6 times a day. That is pretty embarrasing for a medical professional. I'm always afraid someone is going to think I'm drunk. Especially because my balance is bad now too.

I wonder if you could also have an additional autoimmune disease which is still undiagnosed causing you to feel bad even though you were gluten free. I also wonder if a doc could give you an appetite stimulant to help keep the weight on when gluten free.

I think it is hardest on teens and twenties being gluten free because of all the social implications. If you are not forced into it sooner, you may want to try strict gluten free again in a few years when you become old, married, and boring ;) (No, I'm not giving you permission to eat gluten now, but rather encouragement to keep an open mind about gluten free).

0

Share this post


Link to post
Share on other sites

I'll help you with 2 perspectives. Before diagnosis, my daughter 11 at time, looked like she came from a 3rd world country. Twiggy arms and legs and a big bloated belly, couldn't stand anything tight.

Me on the other hand not Celiac, but lets just say rather on the "fluffy" side. Tight belts don't bother me a bit,just gives me incentive to try and suck it in a bit hoping to look less fluffy!LOL

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,419
    • Total Posts
      917,669
  • Topics

  • Posts

    • Formal dinner suggestions
      Hi people. I'd just like some ideas for what I can take for V to a formal family dinner. Unfortunately the restaurant has stated there is no gluten-free safe option so I have to take his meal and dessert.  I can make him gluten-free chocolate cake so thats fine.  But its a three course dinner, and I need to transport it there. Hopefully they will be happy to heat it if needed.  Something really nice and special would be good because everyone else will be eating really  nice meals.  
    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,551
    • Most Online
      1,763

    Newest Member
    Cwilson2345
    Joined