Celiac Belly Or Just Fat?
Posted 07 September 2010 - 05:13 PM
I'm just curious as to your opinion as to the nature of my abdominal discomfort/bloat/visible distension.
Age: 29 years old
Weight: 173 lbs
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
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.
I've put a few links to pictures of my gut and a little video if you care to look.
Posted 08 September 2010 - 12:26 AM
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.
Posted 08 September 2010 - 02:27 AM
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.
"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)
Posted 08 September 2010 - 03:43 AM
Posted 08 September 2010 - 05:37 AM
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.
Posted 08 September 2010 - 08:49 AM
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).
Posted 09 September 2010 - 04:46 AM
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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