Non Reaction To Gluten?

[Gonbad]

Ok was diagnosed in Feb 2007. I had a positive antibody test and positive biopsy and I also have a family history with celiac. Have been on diet for over a year and a half. Prior to diagnosis I had bloating, constipation regularly and occasional loose stools with sever cramps, maybe twice a year. I have never been as sick as many on this board. After the start of the diet I had the expected hightened sensitivity to Gluten. My last accidental gluten was in September 2007 which resulted in loose stools, bloating and incredible bone aches. I have been 100% symptom free since then and had a antibody test done in the late spring that was near normal.

My son's first b'day was earlier this month and I told my wife that I would have cake and plan on going out to eat real pizza after the party. So that is what we did. I ate cake, not very good and in hindsight, pizza and a pitcher of beer. What happened after that and since is absolutely nothing. I have not continued to eat gluten and I am still on the diet. I don't plan on going off either, but I may occasionaly go eat something I really miss once or twice a year.

My father had been gluten free for over 10 years and then went completely off the diet and had been off over 4 years when he passed away from lung cancer after years of a 4 pack-a-day habbit. He too was symptom free over this time.

I have read about silent celiacs which I suppose I was one. I have also read about studies on celiac patients going off the diet and remaining symptom free.

Has anyone else had these experiences?

[ShayFL]

Have you ever cut into an apple that looked perfectly delicious on the outside, but was rotten on the inside? No symptoms does not mean no damage. Just so you know. Consider the home builder who decides he will use untreated 2x4's just here and there...the rest of the house will use pressure treated wood. The house might stand for awhile and look great, but the damage is being done as the termites are eating those untreated timbers. Hope this helps!

[Mtndog]

I can see how it would be REALLY hard not to indulge once in awhile if you don't have a horrid reaction, but Shay's right. You could be doing damage. I am pretty sue, in hindsight, that my mom was a silent celiac- her mom had it and both of them died of a rare type of cancer at the junction of the stomach and intestines. I'm not trying to scare you, just tell you my experiences.

[kimis]

If you can go without it...than why even bother cheating once or twice a year? We all love and miss pizza, cake and beer, but the gluten free versions of these foods can be awsome too! Is it a matter of not knowing how to prepare these foods, or where to get them? I have no common celiac symptoms either, but when I think about the silent damage that could be happening inside my body....I won't even chance it. Food is just food...it's not worth it. But hey man, it's your body....Let's just hope that pizza had a stuffed crust!

[Lisa]

I am one that does not react anymore. I have stayed on the diet for over three years. I certainly have been exposed to cross contamination over these past two years, yet I don't react.

I believe that I have healed to the point that an occasional glutening will not cause me issues. I do not eat gluten intentially. It would take repetitive glutenings over an unknown period of time, to create the level of damage for me to be symptomatic.

There is a great deal of research that needs to be studied post gluten free diet. I don't think we have all the answers yet.

[Gonbad]

I am one that does not react anymore. I have stayed on the diet for over three years. I certainly have been exposed to cross contamination over these past two years, yet I don't react.

I believe that I have healed to the point that an occasional glutening will not cause me issues. I do not eat gluten intentially. It would take repetitive glutenings over an unknown period of time, to create the level of damage for me to be symptomatic.

There is a great deal of research that needs to be studied post gluten free diet. I don't think we have all the answers yet.

I agree completely. I feel that I have probably healed to the point of no longer reacting. However I feel that it would be only a matter of time until the damaged resumed. Therefore I will remain on the diet. However on the day my daughter gets married I will eat cake at her wedding. I think in my situation it will do me no long term harm to eat what I really want to on a very rare occasion.

I have not found any pizza dough recipe, product or prepared that is even close to Star Pizza - Deep Dish Chicago sorry its the truth. The Redbridge beer tastes like well not like beer. The Belgium gluten free ales are pretty good but at $6.00 or more a bottle they are a little pricey.

I have been able to replace many things from my previous diet. Many things I think taste better in gluten free form this is very true of fried foods as they are often crispier.

[YoloGx]

My mother went off diet as a young adult after being diagnosed when she was four. She thought she had no more symptoms and had "outgrown sprue"--what they used to call celiac. However it did mess with her short term memory and made her more subject to getting the flu. It gave her low thyroid (though just on the edge so finally her docs stopped treating her for it during the 1950's when it fell out of "fashion") and low blood sugar plus mild depression. This made her irrascible in temperment and difficult and unhappy as a mother. She had to "run on adrenaline" and get her self pumped up to do anything--which she used anger to do it with. It affected her joints as well, she easily got ganglions etc. and strained "tendons" and frozen shoulders etc. Eventually it also affected her eyesight so she has had to take drops etc. to constantly ward off glaucoma. Now as an advanced elderly person, she finally developed beginnings of dementia as well as dermititus herpetiformis. Thing is, nothing she has had is really awful, however it was such that it made her life unpleasant not only for her but also for others around her. I know for myself that I too used to be similarly irrascible--which went away when I went off most gluten (I didn't know about the trace glutens until last year) plus I too have had the joint problems etc. which also have gone away plus getting flu and colds etc. and weak eyes. Ditto with my short term memory which is improving by leaps and bounds.

Now its kind of late for my mom, however this last year I took her off all gluten (or most since she still will sneak it when she can) and her skin is improving slowly plus her memory loss is also slowed down. She is also no longer getting colds and flu. Its unfortunate in my opinion that she is having to experience this memory loss to the extent that she is since it could have been very preventable if she had not gone back on gluten at all or had at least quit 15 years ago when she was retested and found to still have celiac. Ditto with the eye problems. The docs should have insisted that she stay off of gluten but I guess 15 years ago no one really was very aware of its ravages here in the old USA despite her family history. And yes, my mom is 93 and comparatively doing well for her age. But my point is she could have been doing even better...

Bea

[Lisa]

Bea,

I appreciate your story about your mother. It's nice that you have a history with/of your mother, mine unfortunately died when I was a toddler. I have no history with her or about her.

I am the first, to my knowledge, to be diagnosed with Celiac Disease or associated afflictions. History begins with me.

It is well known, that undiagnosed Celiac Disease, can develop into some fatal concerns. Once diagnosed, the diet is for life. But, all roads do not lead to or follow Celiac. Celiac Disease is one small aspect in the whole physiology of life and aging. Perhaps, if your mother followed a strict gluten free diet, she may live well into her 100's. Surviving into the 90's, to me, is a job well done.

[ShayFL]

Yes, "surviving" into the 90's is quite impressive....but for me...the last 12 years of my life I felt like I was merely "surviving".....I want to be "living" into my 90's!! So while she may "survive" just as long with or without gluten....like you said....she wasnt "living" fully.

That is what staying gluten-free is about.....having a life now and "living" to enjoy it through old age.

[Lisa]

Yes, "surviving" into the 90's is quite impressive....but for me...the last 12 years of my life I felt like I was merely "surviving".....I want to be "living" into my 90's!! So while she may "survive" just as long with or without gluten....like you said....she wasnt "living" fully.

That is what staying gluten-free is about.....having a life now and "living" to enjoy it through old age.

Thank you Shay for your imput.

[YoloGx]

That's what I am saying. Whereas she is basically very strong her life wasn't what it would have been if she had avoided the gluten. I am convinced it made her dysfunctional emotionally as well as short term memory etc. etc. It had disastrous effects on her family for her to not be emotionally available and instead be depressed and ratty. I notice now the marked difference in her temperment off gluten for instance and when she cheats (i.e., she reverts). She could have gone and really acheived something in her life as she was set to do as a young person in anthropology but her physiology due to celiac got in the way. etc. etc.

The other thing I want to include here is that if celiac doesn't kill you, it often goes with having a very long life. This appears to be relatively common... Something to do with the old Norse where the strong lived and the weak died due to harsh weather conditions. Its just what kind of life do you want to live even if you do have a basic strong constitution?? Miserable or shining?

Bea

[Hummingbird4]

I don't seem to react either. I've been very strictly gluten-free for 3 months and was accidentally glutened (for the first time, I think) last night at dinner at my sister's house. She is gluten intolerant, so she made an effort to serve gluten-free foods. For dessert we had some ice cream topped with sauce and nuts. Turns out the "nut topping" had wheat starch in it. I noticed the ingredient list on the can about an hour after I ate it. Figures, the one item I didn't check the label before I ate it, contained gluten.

But I've had no reaction whatsoever. She said she had some D this morning, so it apparently bothered her.