For Those Not So Sensitive Celiacs

[Roda]

I don't know if it is a blessing or a curse to not be an over sensitive celiac. If it had not been for the unexplained anemia, I probably would not have even considered celiac. On the one hand, at least minor amounts of gluten don't bother me, but I wonder if it "adds up". I'm usually very careful. At least if I had symptoms I would definately know what the culprit was. I'm glad though I don't get sick and feel for those who do.

I have been eating this genoa salami off and on for about two weeks. About three days ago I started having minor heartburn (before gluten free my only gi complaint or so I thought). I just figured it was from being tired, not drinking enough water and eating on the run. I have been eating it rolled up in a corn tortilla with swiss cheese and mustard. My husband doesn't think it is the salami, but I don't usually get heartburn any more since going gluten free. I did eat something back in Jan. that was either cross contaminated or had some gluten in the artificial flavoring. I had the worst hearburn and back and mid chest pain! I guess that is what I get for not double checking. I did check with the manufacture of the salami and they stated they did not add any gluten ingredients but could not verify the status of the ingredients they get from their suppliers. I just learned a valuable lesson not to let my guard down and take chances. It's weird that it took this long to bother me. Is there anyone else out there that is not over sensitive?

[Gentleheart]

Just a thought.

I have concluded after much reading that a person's sensitivity to gluten could be directly related to the strength of his or her individual immune system. And strong immune systems are usually considered the ultimate goal for good health. So one would always hope they didn't have a weak one.

I have been told that people who seem to have few or no symptoms related to their gluten sensitivity, are left with a handicap. The fact that they don't actually feel anything, doesn't necessarily mean it isn't doing anything. While decidedly unpleasant, those people who get nearly instant diarrhea or some other tangible symptom immediately after eating something with gluten in it have a huge advantage over those who don't.

I'm just not sure that there is such a thing as a "not very sensitive celiac". I think we just don't quite understand the full story about how this all works yet. Until we do, I would always live on the cautious side. I don't think it's ever OK for a celiac to eat gluten, even if they feel nothing.

[Roda]

I agree whole heartedly about not consuming gluten even if you don't have many outward signs. My biopsy showed partial villious atrophy, so even though my symptoms were minor compared to others, I know it is causing damage. I guess it just goes to show that you can never get too comfortable and let your guard down!

[Darn210]

I don't think heartburn necessarily mean something was cross-contaminated (although it could . . . how's that for wishy-washy ). I would say that my daughter is not a sensitive celiac. Her only outward symptom is acid reflux (to the point of spitting up . . . I call them liquid burps). There have been just a few times in two years that I wondered if something had been contaminated and there's really no way for me to know. She never actually spit up but said she felt "funny". However, in the last year or so, she has determined that too much ketchup bothers her . . . makes her feel "funny" . . . and has cut way back on consumption. We have had no more of those "I feel funny" moments since then, but it hasn't been too long.

Then in my personal experience (although I don't have Celiac), one of my favourite meals (which I make gluten free) ALWAYS gives me terrible heartburn and I don't get heartburn too often. It's also funny, even though I didn't tell my daughter this . . . A little is OK, but too much ketchup gives me heartburn, too.

[ang1e0251]

I don't know if your salami had nitrates/ites in it or not. I've found I'm sensitive to those so I switched to eating Hormel Naturals. I can't remember if they have a salami but they do have pepperoni so you could check your local grocery. I've seen these in all our large chain groceries.

[Roda]

I will agree that reflux/hearburn does not neccessarily mean something was cross-contaminated or contained gluten. I have had problems with red and green koolaid and It is gluten free. I also get it with salmon patties that I make with all safe ingredients. However, the salami is in question where everything else I have been eating at the same time is not. At one point before going gluten free I would even get heartburn after drinking water. The heartburn was the first symptom to go and I felt better from in within 1-2 weeks. So for me I at least consider it a possibility when introducing new products.

[Mtndog]

  Gentleheart said:

Just a thought.

A person's sensitivity to gluten is directly related to the strength of his or her individual immune system. And strong immune systems are the ultimate goal for good health. So one would always hope they didn't have a weak one.

Gentleheart- I'm curious about this- where did you read it?

[Gentleheart]

  Mtndog said:

Gentleheart- I'm curious about this- where did you read it?

It is a conclusion I personally came to after reading many gluten books, articles and research papers on the subject. I can't tell you exactly which ones. I read voraciously. But I have enjoyed studying nutrition for several decades and it has always been assumed by most scientists that a powerful immune system was generally an asset and the ultimate key to maintaining good health in the hostile modern environment in which we live. That's why so many supplements and dietary suggestions focus around building up the immune system. If celiac disease is a malfunction of the human immune system's reaction to a specific substance (gliadin) due to a faulty genetic code and subsequent cellular miscommunication, then it seemed logical to me that the individual capability of each person's immune system to react (strong or weak) might directly be seen in the severity of their glutening symptoms. Therefore, there might be no such thing as more sensitive or less sensitive gluten intolerance. It might be more about what shape your own personal immune system is currently in, either because of genetics or a wearing out from overuse.

I should have stated it as my own theory in my post instead of implying it was fact. I do apologize.

I recall one article I read somewhere that said historians thought celiacs as a group tended to survive plagues for some odd reason. I don't know how factual that article was. Perhaps there was no truth in it. But if it were true, then you would have some information to build a case upon that the immune systems of celiacs might be innately stronger or at the very least more vigilant than the general public. It's just interesting. Of course, after a lifetime of undiagnosed celiac and an immune system constantly on red alert, it would stand to reason that it might eventually begin to wear out and weaken as well.

The original intend of my posting on this thread was to encourage people to not assume they can eat gluten just because they don't actually feel anything or have any overt symptoms. My theory was that maybe their personal immune system is weakened and not reacting properly anymore. The lack of symptoms could be very deceiving.

Thanks, Mtndog. I think I will go back and edit my initial post to correct it for posterity.

[Puddy]

  Roda said:

I don't know if it is a blessing or a curse to not be an over sensitive celiac. If it had not been for the unexplained anemia, I probably would not have even considered celiac. On the one hand, at least minor amounts of gluten don't bother me, but I wonder if it "adds up". I'm usually very careful. At least if I had symptoms I would definately know what the culprit was. I'm glad though I don't get sick and feel for those who do.

I have been eating this genoa salami off and on for about two weeks. About three days ago I started having minor heartburn (before gluten free my only gi complaint or so I thought). I just figured it was from being tired, not drinking enough water and eating on the run. I have been eating it rolled up in a corn tortilla with swiss cheese and mustard. My husband doesn't think it is the salami, but I don't usually get heartburn any more since going gluten free. I did eat something back in Jan. that was either cross contaminated or had some gluten in the artificial flavoring. I had the worst hearburn and back and mid chest pain! I guess that is what I get for not double checking. I did check with the manufacture of the salami and they stated they did not add any gluten ingredients but could not verify the status of the ingredients they get from their suppliers. I just learned a valuable lesson not to let my guard down and take chances. It's weird that it took this long to bother me. Is there anyone else out there that is not over sensitive?

Hi Roda!

I also am not overly sensitive. I was diagnosed because of severe anemia, osteoporosis and lactose intolerance. I did have stomach 'problems' when I was younger, but haven't had any for 25 years. I had the Celiac panel redone after 6 months on the gluten-free diet and my numbers were all normal. I am very conscientious with the diet, but have eaten out and at other people's homes. So either I've never been CCd or do not have any symptoms when I do which worries me. Sometimes I wish I did have an obvious reaction but I, too, am very glad I don't get sick and feel for those who do.

[OptimisticMom42]

Hi Roda,

My first reaction is very mild itching on my elbows. I didn't even notice I was doing it until a co-worker with celiacs pointed it out. Second is a missed BM that extends to a week of missed BM's even with MiraLax. I didn't realize I was damaging my intestine until I could no longer digest dairy.

I'm so glad I don't get hives in my eyes like my co-worker but his hives told him what was going on before he lost his ability to digest dairy.

In reading the internet to educate myself about my celiacs, I kept seeing my 18yo son in the list of symptoms. He had his blood draw to be tested for celiacs today. Our conversation on the way home was about pizza. Better to substitute the crust now than give up the whole pizza latter.

Take care, OptimisticMom42

[sbj]

  Gentleheart said:

I recall one article I read somewhere that said historians thought celiacs as a group tended to survive plagues for some odd reason. I don't know how factual that article was. Perhaps there was no truth in it. But if it were true, then you would have some information to build a case upon that the immune systems of celiacs might be innately stronger

An interesting theory but I don't think it has relevance to the immune system; it has more to do with rats and stored grains. Stored grain tends to attract rats. Rats harbor fleas that transmit a certain bacteria. That bacteria causes the plague. So, it tends to reason, if celiacs in ancient times realized that grain was the cause of their intestinal problems, they might have removed all stored grains from their homes, and this in turn may have saved them from the plague:

"One of the most important customs of Passover . . . is the removal of grain, leavened bread, and even stray crumbs from the home. The replacement of bread with matzo, or unleavened bread, commemorates the haste with which the Israelites fled, so hurriedly that dough prepared for their journey had no time to rise. Martin Blaser, an infectious-diseases physician at Vanderbilt University, has a different idea about how the tradition arose. He thinks that the removal each spring of bread and grain from Israelite homes may have protected them from a rat-borne scourge: Yersinia pestis, the bacterial cause of the plague infamous in medieval Europe as the black death . . . As nomads took up agriculture, says Blaser, they would have become more vulnerable to plague. Stored grain attracts rats, which harbor fleas that transmit Y. pestis bacteria . . . But clearing grain from the home in the spring [the] peak period for plague, forces rodents to search elsewhere for food."

[Nantzie]

I'm relatively sensitive. Even though you are having possible reactions to larger amounts of gluten, I think my experience with smaller amounts might be helpful to you.

My big PITA product category is haircare products. There are products that others seem to have no problem with that I react to. But it can take a few days (I'm guessing the gluten builds up in my system?) to really feel the effects. I have found that it's really just a matter of trial and error. All you can do is stop eating it for a while and then add it back in and keep track of any symptoms you might have. If it makes you feel bad it might be gluten or it might not. Either way, you'll know that it doesn't agree with you. If you really feel like you want to know if it has gluten, you can always do one of those test kits. ??

You could always see if you can find a definite gluten free brand and see if you react the same. Or check the archives and see if other people have had reactions to the same brand you're having a problem with.

As far as being not very sensitive to gluten, I really believe that it builds up. My husband refuses to get tested for celiac and doesn't believe he has a problem with gluten, although he's supportive of having a gluten free house for me and the kids. When he's off gluten he definitely feels better and has more energy. If he goes away on a business trip for more than a few days (gluten-o-rama!) he comes back feeling like crud, acting like a jerk and exhausted. So just my observations with stupidly miniscule amounts of gluten for me, and seeing how business trips effect my husband, I think it totally makes sense.

Hope that helps.

Nancy

[Hummingbird4]

I am not sensitive. My diagnosis came after having about 6 weeks of stomach pain out of the blue, and I thought it was an ulcer. While I was waiting for my scheduled endoscopy, I took an OTC acid-reducer for a few weeks and the pain was completely gone by the time I had the procedure. So I was quite surprised at my diagnosis.

I've been completely gluten-free for about 8 months now and have not purposely eaten any gluten in that time. Found out that my daily yogurt is not considered gluten-free after I'd been eating it for a few months. I didn't have any reactions to it, though. One time, I ate a nut topping on my ice cream, and found out afterward that "wheat starch" was one of the ingredients. Early on, I also ate some salsa a few times that turned out to have "wheat gluten" in the ingredients. No reactions from any of those.

I agree with the others saying that your heartburn may not have been from CC. Occasionally I'll get gas, bloating, or heartburn -- but I don't immediately suspect gluten. It could be the spices in your salami, and they just don't agree with you. Since it doesn't agree with you, don't eat it anymore. But don't kick yourself for thinking you didn't read the label carefully enough or do your part to make sure your food was gluten-free.

[Roda]

Thanks everyone for the replies. I just think I'm going to give up salami for awhile. My husband who is a butcher and meat manager at one of our local stores, does not think its a problem. He really tries to look out for me and gets me product information. I probably just ate too much in one day. Of course I have been around a lot of people with the flu at work so who knows I might even be coming down with something.

[princesskill]

some people just get heart burt from weird things. for me? raw green peppers. i have no idea why but they give me THE WORST heart burn.

[Roda]

I just went back to eating the hormel naturals and I can buy them at walmart. I have been having some tummy trouble lateley and definately don't think it is gluten related. I believe it to be related to my recently discovered thyroid overmedication or I have been over doing it on dairy. I tolerate dairy to a point and if I get "too" much it bothers me.