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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Celiac Belly Or Just Fat?
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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

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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.

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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.

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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.

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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.

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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).

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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

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I had a belly that was bloated and full of gas for years.  The belly in those photos looks like mine did even when young.   Bread I tended to avoid because it caused abdominal distress.  I am in the VA system which can be slow.  It was not until about 6 years ago that it was discoved that I had a 'low grade' form of Celiac disease.  What that is I am not sure.  The VA system can come up with interesting terms.   Wheat, Barley and rye are what upset my system.  Removing them from my diet caused me the lose the belly.  Even when I have a little weight on my chest and back, I still don't really have a belly when I stay gluten free.

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One of the things that I noticed en-route to getting diagnosed was that I had to loosen my belt whilst driving or even changing to looser trousers due to the discomfort. Has almost (not 100%) gone back to "normal" since going gluten-free. 

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