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Bookie53463 added a topic in Celiac Disease - Coping WithCeliac Belly Or Just Fat?Hi Everyone,
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.
- 6 replies
- 7,043 views
Bookie53463 added a topic in Celiac Disease - Coping WithWhat's Wrong With Me?Hi Everyone,
I'd first like to say how nice it is to have such a large kind community of contributors in such a context.
I'm curious if I'm missing something in my treatment and interpretation of my problems because, at this point, it seems as though there's nothing I can do to get any real relief...
A number of years ago, I started to have constipation and both bloating and visible distension.
-constipation for me defined as having a very hard stool every other day or so
-bloating/visible distension being defined as having a large bulbous stomach when standing, minimal amount of "pinchable" fat, a general sense of discomfort; having to wear pretty loose pants such as to not be in extreme discomfort (e.g. I'm 6'2'' and 175lb wearing a 36 inch waist pants while having a body fat of around 13-15%) -- i find the bloating/distension bothers me least if i eat/drink absolutely nothing (as such, I've only had a minimal appetite for years and have to remind myself to eat otherwise I have other problems from being too thin)
I was diagnosed with Celiac via blood tests and biopsy.
Immediately afterward, I adopted a gluten-free diet (pretty carefully, I doubt I had much exposure to gluten). I followed this diet for a year (during which point my blood work decreased from 180 to 80 (where over 30 is positive)). At the end of that year, my constipation was somewhat improved but my bloating/distension did not improve at all.
Also, during that year, I spent a period of time (3 weeks) having a virtually complete elimination diet (elemental diet) though it did not help my bloating/distension (no soy, sugars, etc.).
After the year, I decided it wasn't worth it to continue the diet since it didn't help my primary symptom of bloating (I've since started taking miralax which has solved the constipation problem). My celiac bloodwork is now back up high but I feel no different than I did during the year that I deprived myself of gluten. I also have very little lactose in my diet (that makes me feel worse) though I do have a little low lactose cheese (ie hard cheeses).
My questions are...
Is there anyone here who's been able to solve their bloating problem?
-How long did it take?
-Did it seem to relate to your bloodwork?
-Does anyone here understand the underlying mechanism for bloating in celiac? (I don't seem to pass much gas)
-If it's inflammatory -- would/has prednisone helped anyone?
-I've been trying low-dose naltrexone but it hasn't done anything for me
Could this just be IBS?
Do I just have to learn to live with being uncomfortable for the rest of my life?
Thanks guys (and gals)
- 4 replies
- 657 views
Bookie53463 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Ttg Results And Symptoms Relationship?Hi everyone,
I was just wondering what people's experiences have been regarding their tTG results and their symptoms after they have become gluten free...
Before going gluten-free, I had a tTG score of about 180 (where a high positive is > 30)
1.5 years later, my tTG is only 70, so still a strong positive but not as positive
My primary symptom of a [essentially constant] bloated/distended/uncomfortable gassy stomach did not change at all over that 1.5 years (i.e. I'm 6'2'', 170 lbs, and still wear pants with a 36 inch waist despite being a muscular guy).
My symptoms are the above mentioned bloated stomach and moderate constipation/sense of incomplete evacuation (the latter which is helped by miralax but alleviating the constipation has done little to help the other more concerning symptom).
--> Have other people had these symptoms and had a high tTG?
--> Will I have to wait until my tTG is much lower to experience any improvement?
- 2 replies
- 1,830 views
Bookie53463 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Has Anyone Had Any Success With Tso/whipworm And/or Hookworm Therapy?Hi everyone,
I was just wondering if anyone here has tried TSO/Whipworm and/or Hookworm therapy for their Celiac disease. It seems potentially helpful (granted there doesn't appear to be a tremendous amount of research on it). While trying out different diets might ultimately help me, fixing my immune system so I can live a comparatively normal life is far more appealing...
- 20 replies
- 5,574 views
Bookie53463 added a topic in Celiac Disease - Coping WithDoes This Sound Like Celiac? Any Advice?Hi Everyone,
I'd first like to thank everyone for spending so much time and research into putting together such a high quality forum.
I've been feeling uncomfortable for years and have only found some relief in one thing -- fasting or just eating very little which is unfortunately pretty unsustainable...
Since my early 20's I gradually developed symptoms of bloating and distension along with moderate constipation. Having a bowel movement or passing gas seems to reduce the pressure to some extent but it's virtually always there (morning/afternoon/night -- doesn't seem to matter). I've been taking miralax for a few months which seems to help the constipation but does little to help the bloating/distension (i.e. I'm 6'2'' at 170 lbs, 12% body fat and have to wear 36" waist pants to avoid putting any unbearable pressure on my abdomen).
In trying to figure out what's going on with me, I was tested for Celiac disease and had sky high serology (i.e. ~170 on a tTG blood test where 30+ was a strong positive) and positive pathology (Marsh II). After my endoscopy, I was very strictly gluten-free for a year and I felt absolutely no different even though my tTG dropped gradually to around a 40 on the same exact test kit. Since I felt no better after a year of being very strict (barely ever ate out except at restaurants which specifically cater to celiacs and ate salads the rest of the time out or prepared my own food), I gave up on the diet. Since I started eating bread again, I really feel no different than I did that year. I essentially thought -- if I'm going to feel miserable, I might as well not deny myself something which seems to have no impact on me. My serology is now high again (I had it tested out of curiosity) though I feel no different.
I've tried zelnorm, amitiza, prilosec, activated charcoal, variety of enzymes, tons of exercise (aerobics, pilates), lactose free, soy free, a variety of antibiotics and even a 3 week vivonex diet for possible overgrowth.
--> Is there something I'm missing here?
--> Is this symptom of a relatively constant bloating sensation with distension common for celiacs? Is it a function of constant inflammation or more just my abdominal muscles having been retrained as a function of my gut generally being pretty gassy?
--> Is my only real option to go gluten-free again and hope for the best? (not sure I can handle that again unless I had some real confidence it would help me)
- 4 replies
- 597 views