What's Wrong With Me?
Posted 17 July 2009 - 02:07 PM
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)
Posted 17 July 2009 - 04:14 PM
Have you ever eliminated all dairy? You may have an issue with casien instead of lactose.
You may want to consider seeing an allergist who can guide you in an elimination diet where you start out with 5 foods that the doctor picks to make sure you get adaquate nutrition and calories and then add back in one food in pure form at a time for week and see if you react. That might pinpoint if you have other intolerances.
Also are you on any meds or supplements and have you checked them to make sure they are gluten free? Did you get a lot of crosscontamination during the time you were gluten free? You may have been getting enough gluten to keep the bloat going from CC in 'processed in the same facilty' and eating out in restaurants that aren't as gluten savvy as we would like.
"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 17 July 2009 - 04:36 PM
Posted 17 July 2009 - 05:21 PM
Some people don't have any symptoms. That doesn't mean you shouldn't be gluten free. It canall be internal that you cannot see. You are damaging your insides by not continuing to be gluten free.
I agree with you though from reading studies on the risks of developing other problems, the relative increase is pretty tiny (e.g. the risk of intestinal lymphoma might be 3 times higher in untreated celiac disease, but the actual risk is miniscule to begin with... (the stats supporting such a relative risk are pretty risque as well))
I'm only concerned with what's certain and real as opposed to what's abstract and extremely unlikely. Keep in mind that the incidence of these other issues might appear higher here because generally only people with more serious celiac disease frequent forums like this (i.e. a biased population).
Posted 17 July 2009 - 09:47 PM
Gluten for a celiac is like eating poison. It causes the body to attack itself and makes for a high probability of leaky gut situation which then lead to poor absorption of basic minerals and vitamins that your body needs in order to avoid various degenerative diseases as well as auto immune responses like fibromyalgia, arthritis etc. If you know you have celiac disease from tests, you know you have it pretty bad whether you are conscious of the effects or not. Its kind of like playing Russian Roulette with your health.
I understand there is an article about celiac in Scientific America that you might want to look at. Maybe in the future we all can get away with eating gluten without ill effect; but it is at least 20 years before there is a "cure--if the scientists get lucky. At least now the blood tests for it are getting better.
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