Oh, one more question: has anyone here who is gluten intolerant only been to a "celiac" support group and found it to be helpful? I'm considering this for myself. Not sure we have a gluten intolerance support group. Heard those are hard to come by anyway. <_<
Thank you and God Bless!
Celiacs and the gluten intolerant share a common "enemy" and we have people at our group that weren't biopsy diagnosed or have been diagnosed as gluten intolerant or even just have a wheat allergy.
After spending a little over a year on this board and reading many people's responses - some scientific, most just relating experiences, it is my personal opinion that all who react to gluten are Gluten Intolerant, even though there are many contributing factors that result in this condition.
Those who have been diagnosed with villi damage (with the associated malabsorbtion issues) or DH and/or have certain genes are labeled as Celiac. Those without intestinal damage, no detectible malabsorbtion and certain other genes are labeled Gluten Intolerant. Both conditions can contribute to other autoimmune diseases and/or neurological and psychological problems. Each individual's body handles gluten in a different way with varying results.
I feel fairly certain that after some more years of research that it will all be listed under the same condition with subclassifications. However, whatever the label, the treatment for all is the same - gluten-free for life.
Valda Enterolab results: ...two genes for gluten intolerance ...casein intolerance other sensitivities: corn, eggs, soy, potato, tapioca Hypoglycemic Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer) Living a healthier, happier life. ------------------------------------------------------------------------------------------------------------------- If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10
Oh, one more question: has anyone here who is gluten intolerant only been to a "celiac" support group and found it to be helpful? I'm considering this for myself. Not sure we have a gluten intolerance support group. Heard those are hard to come by anyway. Thank you and God Bless!
So here is my input for something a little different... I have a wheat allergy. It has been "medically confirmed" that i do not have celiac. But I post on this board & talk to some people in the Dallas Area celiac group as they are much more in tune with my experiences than others you will find on general allergy boards.
That being said, I have no different a view on gluten than anyone else here does. Just b/c you have no seen symptoms does not mean you are not doing harm to your body. Even if my allergy magically "goes away" (which hardly seems possible) I will continue to not eat wheat. IMO once gluten intolerant, always gluten intolerant. Wheat & grains are not all they are cracked up to be. It is very tough @ first & I still have moments of weakness but in the end I feel like an entirely new person now that I am gluten-free. And I would like to stay that person too!
Jessica Negative for Celiac Confirmed Wheat Allergy May 5, 2007 Gluten-Free since May 7, 2007! Other allergies: Dust Mites, Bananas, Fish, Shellfish, Chocolate, Feathers, Penicillin, 3 kinds of grasses, 4 kinds of trees & shrubs, 3 kinds of mold, & Cockroaches!
I would strongly recommend committing to the diet. Here's what happened to my grandmother:
She was diagnosed with some kind of wheat problem in her 20s, just like me. This was the 1940s, so the tests weren't advanced enough to distinguish between celiac, non-celiac gluten intolerance, etc. She went on a strict diet for a few years. They told her she grew out of it because he insides did heal. At that time I'm sure they thought she did grow out of it. By the time she died at 85, she had about half the problems listed in books about untreated celiac disease, including diabetes (and eventually carpal tunnels), one autoimmune disease (scleroderma), arthritis from a young age, trouble conceiving and keeping babies, and eventually liver failure from a lifetime of all the drugs needed to compensate for her various conditions.
I'm leaving out a lot of things on the list because I can't find it right now. My point is that I have no trouble keeping to the diet after seeing what 85 years of eating gluten can do to a person who shouldn't have gluten.
Gluten free since Feb 2006, Dairy and Soy free since 2009
Anemic off and on since 2003
Negative tTG Ab, IgA, Gliadin Ab IgA, wheat allergy (IgE) blood tests (Feb 2006)
Positive wheat allergy skin test(Apr 2006)and dietary response (Feb 2006)
Celiac grandmother (Dx in 1940s, "grew out of it")
Training for my first triathlon to support the Crohn's and Colitis Foundation of America.
I'm gluten intolerant (non-Celiac). At this point I have no reason to believe that this is indeed a life-long situation for me.
I'm working with some great Dr.'s and its definately possible for some people to lose this intolerance with treatment of underlying issues and healing.
Everyone is different...I'm told I will have to wait until I'm well to determine whether or not gluten will continue to be a problem for me.
For now...I am being treated for the things which have led to the gluten intolerance in the first place.
If I chose not to address these underlying issues...then YES...I most certainly would need to avoid gluten for life. It would be a life-long situation because the circumstances which have caused my body to no longer tolerate gluten (as well as a long list of other foods) would remain unchanged.
I dont think its accurate to state that ALL cases of non-celiac gluten intolerance require life-long dietary restrictions. It really depends on the actual *cause* of the individual's gluten intolerance. If its not Celiac...then what is it??
There are many *treatable* conditions that can lead to a gluten intolerance.
If some people are not looking into underlying issues that may be contributing....they *may* remain at risk for many of the same conditions they are trying avoid by not consuming gluten.
Alot of those who have non-celiac gluten intolerance are not well even while following the diet...this is a good reason to dig a little deeper for answers.
Yes, I agree with Rachel 100%. In fact, I am an example of it.
People like Munchkinette's grandmother are undiagnosed celiacs and need a lifetime of eating gluten-free.
However, my own gluten intolerance, which was very severe, I was sensitive to even the smallest crumb, is completely gone! I have Lyme Disease and had heavy metal toxcity. With both of those being treated, my intolerance to gluten has now gone away completely.
It has taken a couple months for me to be sure, but I am sure, it is gone.
I was one of those who got sicker when I ate gluten or got any kind of contamination, but never got completely well on a gluten-free diet. I tried cutting out soy, corn and dairy for 6 months as well, but no improvement over the intitial improvement I had upon starting to eat gluten-free.
I am not implying that everyone who is non-celiac gluten intolerant will get better and be able to eat gluten again. I think some people truly have gluten problems and have negative celiac tests. Obviously there is much to be learned about this.
I also find it interesting that the ONLY sensitivity to food I had was to gluten. This happened to my daughter as well. Once her Lyme and heavy metals were treated, she was no longer sensitive to gluten at all. This is the same daughter who was begging to end a gluten challenge after only three days back in December.
For those who are curious, my Enterolab score was IgA 60. I also was over 30 on my casein score, but never had any changes dairy-free for six months. I was obviously having a very strong immune reaction, but I think that was from my leaky gut and my overactive immune system due to the Lyme Disease. My celiac blood tests were negative and I am negative for celiac genes.
I still eat gluten-free at home because I think it's a healthy lifestyle ... and I mostly eat gluten-free out, but I don't worry about ingredients like I used to. I believe that gluten is not very healthy for many reasons.
Is it possible that those who are gluten intolerant and find that they can eat gluten again don't have the celiac genes DQ2 or DQ8 ?
It would explain why some can eat gluten again and others can't ... And goes along with what someone else said about only people with those genes getting celiac.
Yes...Celiac is genetic....so those who do not carry these genes do not necessarily require a life-long gluten-free diet.
If they can identify and resolve what might be causing their gluten intolerance...it may be something that they can overcome with proper treatment.
I do not carry Celiac genes.
My concern is that in saying that EVERY person with gluten intolerance requires a life-long diet.....it may lead them to believe that gluten is the sole cause for their symptoms/suffering....when often there are underlying issues that end up getting ignored.
If other health problems are left undiagnosed....the consequences may be just as damaging as continuing to consume gluten (while intolerant).
BTW. Did either of you have problems with gluten as a child ?
I had no health problems until 5 years ago (at age 31).
I was healthy as a child and never had any problems with any foods. I was never sick and I had never experienced sensitivities to environmental allergens, chemicals or foods until 5 years ago. I got hit with it all at once.
All of my sensitivities/symptoms came on after some dental work. I was exposed to more mercury than my body was able to handle and all heck broke loose after that.
I didn't have a gluten problem as a child, though I did have some stomach issues, which run in my family. I'm not talking about anything major, just stomach aches. I was exposed to Lyme when I was 9.
Many of my stomach issues seem to have come from one of the tick-born infections (Bartonella) and from bacterial dysbiosis.
Anytime I had a Lyme flare-up of symptoms, stomach issues were always involved ... in fact, stomach issues always came first before other symptoms, which is why we thought it was celiac, especially when I had such improvement on the gluten-free diet.
I think part of it has to do with the Lyme bacteria attacking the weakest system the most ... with my family history of GI problems, it hit there first.
The reason I was asking about problems as a child is that I was wondering how many DQ2's or DQ8's have nuerological problems without digestive problems early on and if that's a clue that they should avoid gluten for life.
I believe my childhood nuerological problems were from gluten. And if we'd known that I was a DQ2 and I'd avoided gluten, it could have saved me from getting so sick back in 1990.
I'm sorry if you've discussed this somewhere and I missed it, but how do you know your gluten intolerance is from mercury or Lyme ?
Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)
2004 - Digestive pain all the time.
May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)
No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.
Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.
June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.
August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.
June 19, 2007 - Positive DQ2, Dx Celiac
October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues
Nov 2007 - Started Paleo diet for chronic hypoglycemia
April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.
May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.