Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Celiac Belly Or Just Fat?


  • Please log in to reply

6 replies to this topic

#1 Bookie53463

 
Bookie53463

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 07 September 2010 - 05:13 PM

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

Celiac.com Sponsor:

#2 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 08 September 2010 - 12:26 AM

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

#3 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,769 posts
 

Posted 08 September 2010 - 02:27 AM

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
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 08 September 2010 - 03:43 AM

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

#5 Charlie's Girl

 
Charlie's Girl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 84 posts
 

Posted 08 September 2010 - 05:37 AM

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

#6 SGWhiskers

 
SGWhiskers

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 588 posts
 

Posted 08 September 2010 - 08:49 AM

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

#7 my3monkees

 
my3monkees

    Community Member

  • Advanced Members
  • PipPipPip
  • 39 posts
 

Posted 09 September 2010 - 04:46 AM

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




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: