Medication-gluten Digesting Enzymes
Posted 15 October 2007 - 08:07 AM
DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/
Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.
Posted 15 October 2007 - 09:12 AM
It's in testing now.
I was surprised to find that they're measuring its effectiveness with a test for the extent of permeability in leaky-gut.
From what I've read, it's more a treatment for leaky-gut - both repair & prevention I believe - than something more directly related to celiac or gluten, tho I do think leaky-gut is directly related to celiac. Uh-oh, that doesn't make as much sense as I'd hoped it would.
Anyway, it may turn out to be a very helpful drug in recovery from celiac damage, but is probably at least a couple yrs away. I've seen mention of it as a potential "cure", but to me, that's highly misguided.
Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.
Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07
Posted 15 October 2007 - 10:08 AM
Posted 16 October 2007 - 11:20 AM
I just needed to vent!
Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.
Household mostly gluten free since 3/07
Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic
Posted 17 October 2007 - 02:43 AM
A pill to toterate gluten would be a miracle pill. I hope it would be more effective then the lactose enzyme pills that we lactose suffers have to take.
You may be sensitive to casein and not to lactose, in which case the lactose enzyme pills are not going to help at all. You may need to eliminate casein and not lactose, not easy I know cause I am there right now. There are lots of replacements for cheese and stuff that are lactose free but even a lot of stuff that says dairy free has casien.
As to the enzyme pill, my health food store has a product called something like glutenese digestive enzymes. It states clearly on the bottle that it is not for celaic. I don't take them but my DH does. He eats breakfast out almost every day and while he is knowledgeable about CC issues he does not like to mention the need for seperate cooking etc and just orders his eggs off the grill. He was getting CC constantly which effects him more neurologically than GI wise. He does not take it to be able to eat gluten but he does seem to be much less 'twitchy' from CC lately. He is on his second bottle and normally has to be really pushed to even take a vitamin so he must be noticing some difference himself.
"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 October 2007 - 08:41 AM
I sometimes cannot understand why, aside from the money aspect of it, people have such a hard time with going and staying gluten-free. There is just so much good food out there that can replace whatever you crave. I don't know about anyone else but even if there was a complete cure, the thought of eating fast food or a donut makes me want to barf. I was way too sick to ever want to eat that crappy food again! I can't even stand the smell of fast food.
Posted 04 November 2007 - 07:28 PM
I used to work with a little girl who was autistic, and her parents had her on a gluten-free casein-free diet, and I could definately see the difference in her when she was completely gluten-casein-free as opposed to when she ate anything with gluten or casein.
Her mom would buy an enzyme from http://www.houstonni.com/ that she would have before having any gluten or casein - such as when they ordered pizza and or went out to eat. She would keep as much gluten or casein out of her diet as possible, but these enzymes helped.
They didn't cure her, but I remember it helping.
I also found this site http://www.enzymestu...m/dietsgfcf.htm
Which seemed to have some pretty interesting information about studies and stuff.
Then this site: http://www.enzymestu...robiotics.htm#2
Which described the enzymes and probiotics.
I remember writing down the name of the exact enzyme she used, it's just a matter of finding that little piece of paper...
Mostly gluten-free since only 11/07
Diagnosed with Lupus and Fibromyalgia
(Gluten-free diet helps, so maybe a Celiac too?)
Posted 04 November 2007 - 07:37 PM
Has anyone been able to get the pills that are supposed to digest gluten ? I know about it from an article on this celiac.com website that I read about a year ago. Some medical place in the state Maryland was the one that mentioned it , and I'm sure it exists , but no one seems to want us to have it, or else it would have been offered to us all. I think it was brand new when it was mentioned last year. Maybe they have to test it or something. I wouldn't use it all the time like people think -I would use it occasionally when I eat pizza,pretzels,doughnuts,and Christmas bread stuffing,which isn't every every day,more like every two months. AND I wouldn't have to worry abouting eroding my small intestine and such.
Candy, from what I've read, it seems as though that pill is supposed to avoid reactions to cross-contamination; it's not a license to eat poison, not even every two months!
Unfortunately for us, there are studies that show that even eating a crumb a month is enough to cause visible villi damage in celiacs. That means that every time you cheat, you are triggering your immune system to destroy part of your body.
You can MAKE gluten-free pizza, doughnuts, and Christmas bread stuffing EASILY, and if you use the right recipes, it really does taste as good as the gluteny stuff. And Kinninkinnick makes gluten-free pretzels that taste exactly like--pretzels, and I have to fight my gluten-eating husband for them. Come to think of it, Kinnikinnick also makes really good chocolate doughnuts, too.
Posted 06 November 2007 - 03:25 AM
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users