New And Questioning Things

[MartialArtist]

I was diagnosed all of YESTERDAY with celiac and have been doing everything I can to gain as much information as fast as I can. I've been aware of celiac disease for quite some time, so it's not a "baptism by fire" exactly, but the thing that has blown my mind the most is the talk of "cross contamination". Is it really that serious a concern for everyone with celiac disease that you might ingest a speck of wheat because you and your non-celiac child used the same peanut butter jar? Or is this specific to each person's sensitivity level? And how am I to know what my sensitivity level is -- does the level of severity of the villous atrophy or the range of the numbers from the celiac panel blood test help me know how sensitive I am likely to be?

Also, my celiac disease was discovered b/c I had pretty bad anemia that didn't improve after almost a year of oral iron supplements. I have some gassiness every few days and get acid reflux once a week or so, but in terms of just feeling sick or even particularly drained/fatigued, I have not experienced too much of that (unless I've experienced it for so long that I don't know what I should feel like). So I'm not sure how to expect to feel once I've gotten and stayed gluten-free for a while.

And I'm not sure how I'd know if I accidentally got some traces of gluten down the line (or even what the consequence would be if I threw all caution to the wind once in a blue moon and ate a donut from the local bakery!!). I do understand that if you are gluten free for a while and re-introduce gluten purposely (such as if you haven't actually had a diagnosis and you decide you want to confirm the disease), you have to be gluten-consuming for a while before the tests will reflect gluten issues. So does that mean that once my body is "healed" from the damage of the gluten, it won't make a huge difference if there's a slip-up now and then? Don't get me wrong -- I'm not really planning personal sabotage or "accidental" gluten ingestion, and I'm not deluding myself into thinking it's not a serious thing. I'm just curious how all this works in the bigger picture.

Can someone help me understand this info?

[The Glutenator]

First of all, I am sorry to hear about your new diagnosis. But, as frustrating as it can be at the outset, once you are on the diet for a little while you will begin to feel magnitudes better and it will be worth all the adjustments you have to make. It is interesting to hear that you do not feel very symptomatic, and after a couple months gluten-free you just might feel like a whole new person. It took 2 - 3 months for the full benefits of the diet to kick in for me, so hang in there and don't expect miracles in a night, but it will happen.

As far as cross contamination, I would recommend being super vigilant off the bat to set your self up well for the long run. It may sound extreme now to buy a new toaster, new butter, new peanut butter...etc but you really must do it. At the beginning of the gluten-free diet, you probably wouldn't notice if you shared spreads or a cutting surface, but after a couple months your body will probably give you some pretty clear signs that some crumbs got into you somehow. If I accidentally eat gluten (like hidden in an assumed safe salad dressing) the symptoms are fairly extreme and even to the point of losing bowel control. If I get glutenated through cross-contamination (like eating fruit that has been handled by someone who just touched bread) I get bloated, headache, exhausted, and more frequent bathroom trips which lasts a few days. It seems as though everyone has a different set of symptoms from being glutenated, but your body will most likely find a way to let you know.

Oh, and if you have a hankering for a donut, try kinnikinnick donuts. The cinnamon sugar are amazing and with some ice-cream you will be saying "who needs gluten anyway". You will most likely have to try a few brands of gluten-free products before you find substitutes for gluten in your diet, but there are pretty good replacements for most things. In a few months you will be feeling so much better and will have found new gluten-free indulgences and all will seem right in your body again.

Good luck!

[Jestgar]

Think of a cut on your arm. Every time you lightly scratch it (CC) you slow down or reverse the healing. Every time you open the cut completely (a donut) you are back to where you started.

If you keep damaging yourself you may never heal.

[GFinDC]

...

I do understand that if you are gluten free for a while and re-introduce gluten purposely (such as if you haven't actually had a diagnosis and you decide you want to confirm the disease), you have to be gluten-consuming for a while before the tests will reflect gluten issues. So does that mean that once my body is "healed" from the damage of the gluten, it won't make a huge difference if there's a slip-up now and then? Don't get me wrong -- I'm not really planning personal sabotage or "accidental" gluten ingestion, and I'm not deluding myself into thinking it's not a serious thing. I'm just curious how all this works in the bigger picture.

Can someone help me understand this info?

Hi,

That actually is a real good question. It seems like if you eat gluten the antibodies would show up in the bloodstream pretty quick if there was a problem right? But the thing is, the antibodies don't just randomly wander around any old where in the body.

Ok, I am getting out my Wiki degree. The way I understand it is, the antibodies are not randomly distributed around the body. Iga is focused on mucosal areas, like the gut lining. So that's where the majority of it naturally appears. It actually makes sense. The invader, gluten (gliaden) has sneaked into in your gut somehow, and your body makes a bunch of antibodies in your gut to fight it. That's where the action is so the soldiers go to the front, not all over the body randomly. So, the appearance of antibodies in the bloodstream isn't large, since that isn't the problem area. I didn't figure this out, there was an article by Dr. Kenneth Fine (Enterlobs) that explained it.

There is thing called leaky gut, where they say the gliaden fragments can get through the villi and into the bloodstream. That would lead to antibodies in the bloodstream to fight the invader there or whereever the bloodstream carried the gliaden in the body. But the main fight is in the intestines for celiacs. For gluten sensitivity, it could be in other parts of the body.

There is a long wiki article on antibodies here.

Open Original Shared Link

A small section of an article by Dr. Kenneth Fine:

Open Original Shared Link

...

An important conclusion can be drawn from these results, as these researchers and myself have done: gluten sensitive individuals who do not have villous atrophy (the mass of the iceberg), will only have evidence of their immunologic reaction to gluten by a test that assesses for antigliadin IgA antibodies where that foodstuff is located, inside the intestinal tract, not the blood. This makes sense anyway, because the immune system of the intestine, when fighting an antigen or infection inside the intestine, wages the fight right in that location in an attempt to neutralize the invading antigen, thereby preventing its penetration into the body. It does this with T cells on the surface of the epithelium, the intraepithelial lymphocytes, and with secretory IgA made with a special component called secretory piece that allows its secretion into the intestine.

...

...

In these non-celiac, gluten sensitive individuals, the brunt of the immune reaction either affects the function of the intestine, causing symptoms without structural damage, affects other tissues of the body (and virtually all tissues have been affected in different individuals), or both. This is important because the commonly used diagnostic tests of clinically important gluten sensitivity (blood tests for certain antibodies and intestinal biopsies) are only positive when villous atrophy of the small intestine is present.

...

As mentioned above, the main test used for primary (before symptoms develop) and secondary (after symptoms develop) screening for celiac disease, blood tests for antigliadin and antiendomysial/antitissue transglutaminase antibodies, are only routinely positive after damage to intestinal villi is extensive.

...

End of article quotes

So, it seems to me that the antibodies appear in the intestine first, and then after some damage is done they go out into the bloodstream pursuing the gliaden allergen.

But for gluten sensitivity vs celiac, they go out in the bloodstream earlier perhaps? that seems logical, but I am not sure of it.

[allisons]

I think the truth is, even medical science doesn't know the answer to this question. Why celiac's happens at all is a mystery. Different people end up more and less sensitive, and if I understand what my nutritionist said, early in the gluten-free process your sensitivity is a bit volatile. The best thing to do is be 100% gluten-free if you can, let your intestines heal and then see where you're at.

My dad's doctor (dad got diagnosed like a month before me - mine was found 'cause they told him to tell his kids to get tested) said that you actually can get *more* sensitive than you were when you were eating gluten. Your body is treating gluten like it's poison and having it all the time weakens it - it getting healthier may mean it does a better job attacking the poison, which means attacking your intestines. It's actually possible that you'll develop intestinal symptoms that you don't have now.

Great, right?

We who have fewer outward symptoms are in a bit of a bind - we're just as much at risk for the complications as anyone else but without the good feedback loop smacking us when we're bad. On the other hand, the problem with the gluten-induced damage is its chronic nature. Little bits all the time add up to serious damage. Once in awhile, if it doesn't physically hurt, probably isn't a problem.

They say it takes about 6 months for your little hairy-hairs to grow back (the villi that vastly increase the surface area of your small intestines, creating many more opportunities for the chemical reactions that lead to absorption of nutrients). My suggestion would be to be vigilant for 6 months. Pull the peanut butter out of the jar and on to the plate with a different utensil than the one you use to spread it. (Or get separate peanut butters - I like creamy, my husband likes crunchy, so really it worked out well). After that, try a single donut. See what happens. You might immediately throw up.

The reason I don't think I could do that is when I had my single donut and I inevitably had no symptoms, I would fall completely and 100% off the wagon. So, I don't know what kind of person you are - could you have a donut once a year and call it good?

[proud-armywife]

OH MY GOSH!!! I specifically came on the board today to see if anyone had any ideas about this topic!!! I have also been newly diagnosed. Found through unexplained anemia! I Thank you for your post! I wanted to add, that I thought also that I had no symptoms or latent celiac the doctor said. But I have been able to identify a few things recently that have happened all along and I accepted them to be "normal". You may or may not have that reaction. I do not know enough about this disease. I feel like I have read a million different things but where do I begin if I can't even tell I am eating it? I didn't even read the other responses I was so happy to see someone going through this like me. I had very stong positive blood tests and biopsies, did yours come back positive too? And I also wonder how strict you have to be..... I am trying to do this. It is so hard! My hubby came home with subway- my favorite sandwiches. He got it for him and the kids-and I ate it! I have been trying not to eat gluten but I could not resist! I feel like a drug addict! I hope we can find our way through this. I went into whole foods and trader joes yesterday and left out of complete frustaration. I was so overwhelmed- I could have cried. You have certainly given me some hope for today.I will be looking for your posts.I am sending happy thoughts your way and good luck.

[Jestgar]

He got it for him and the kids-and I ate it! I have been trying not to eat gluten but I could not resist! I feel like a drug addict!

If this is such an issue for you, you have got to find substitutes for things. I don't think it's possible to live when you have to deny yourself, but if you can have something that is very similar, but won't poison you, it's much easier to deal with things.

Set yourself a challenge to come up with the perfect subway substitute. It will be fun to do, and when you figure it out you can post your recipe for all the other 'addicts' on the board.

[MartialArtist]

@proud-armywife - I first got diagnosed through an endoscopy looking for a possible bleed that was causing my anemia b/c there was at least some evidence of bleeding (that ultimately didn't pan out). The word from that was "severe villous atrophy consistent with celiac disease" but the nurse didn't explain it well on the phone so I dismissed her out of hand. However, the doc wanted to follow up with the blood tests, so I did, figuring we'd be able to dismiss this and move on to the real problem! My blood tests came back ALL 4 positive (none even "weak positive") and the TTG IgA was ">100" (where <4 constitutes a negative test!). That was harder to refute!! LOL! So it sounds like you and I are basically in the same boat.

As I think about it, I'm starting to believe that I have more digestive distress than I ever thought about b/c I rarely have double-over cramping or vomiting. But I am very rumbly and do have acid reflux on a reasonably frequent basis. But I'm a high-strung individual, so I mostly chalked it all up to stress. It'll be interesting if this fixes all those symptoms (not the high-strung part -- that's just me!).

I've jumped in with both feet and am not letting myself cheat at all, but the hardest part is the hidden gluten. But let me tell you -- Udi's gluten-free bagels are really good and their whole grain bread made for a reasonably good sandwich. I bought a cookbook that I haven't tried yet that had bunches of recipes for gluten-free breads including some that can be made like sandwich rolls (like Subway, I suppose). When I try them and find out what works, I'll let you know. The WOW brand cookies (I bought peanut butter) are AWESOME! I'd eat those if I weren't dealing with this!

My grocery run this week took much longer than normal, but I had my phone to google gluten free on things I was unsure about and I have bought the ingredients to make some of my family's regular meals with as few modifications as necessary to make them gluten-free. It's reassuring to find out that the McCormick's taco seasoning I've always used is gluten-free so there are no mods required for that meal if we use crunch shells!

It's not gonna be an easy transition, but I'm going to do it full on. Join me, Proud-armywife! We can do this!

[JNBunnie1]

If this is such an issue for you, you have got to find substitutes for things. I don't think it's possible to live when you have to deny yourself, but if you can have something that is very similar, but won't poison you, it's much easier to deal with things.

Set yourself a challenge to come up with the perfect subway substitute. It will be fun to do, and when you figure it out you can post your recipe for all the other 'addicts' on the board.

I agree with this. Also, if you live near me, I will happily take you through both groceries and show you what's good and what's not. Where you at?

[Korwyn]

I was diagnosed all of YESTERDAY with celiac and have been doing everything I can to gain as much information as fast as I can. I've been aware of celiac disease for quite some time, so it's not a "baptism by fire" exactly, but the thing that has blown my mind the most is the talk of "cross contamination". Is it really that serious a concern for everyone with celiac disease that you might ingest a speck of wheat because you and your non-celiac child used the same peanut butter jar? Or is this specific to each person's sensitivity level? And how am I to know what my sensitivity level is -- does the level of severity of the villous atrophy or the range of the numbers from the celiac panel blood test help me know how sensitive I am likely to be?

Also, my celiac disease was discovered b/c I had pretty bad anemia that didn't improve after almost a year of oral iron supplements. I have some gassiness every few days and get acid reflux once a week or so, but in terms of just feeling sick or even particularly drained/fatigued, I have not experienced too much of that (unless I've experienced it for so long that I don't know what I should feel like). So I'm not sure how to expect to feel once I've gotten and stayed gluten-free for a while.

And I'm not sure how I'd know if I accidentally got some traces of gluten down the line (or even what the consequence would be if I threw all caution to the wind once in a blue moon and ate a donut from the local bakery!!). I do understand that if you are gluten free for a while and re-introduce gluten purposely (such as if you haven't actually had a diagnosis and you decide you want to confirm the disease), you have to be gluten-consuming for a while before the tests will reflect gluten issues. So does that mean that once my body is "healed" from the damage of the gluten, it won't make a huge difference if there's a slip-up now and then? Don't get me wrong -- I'm not really planning personal sabotage or "accidental" gluten ingestion, and I'm not deluding myself into thinking it's not a serious thing. I'm just curious how all this works in the bigger picture.

Can someone help me understand this info?

Hi MA!

Yes, I can attest that it is indeed an issue. In fact I got quite sick while our daughter was visiting for a week with our 3 month old grand-daughter. The formula contained wheat and she spilled some on the counter. My wife and daughter prepared a pork roast that afternoon and I was sick for four days even though they cleaned up the counter pretty well.

As far as what your personal symptoms will be if you get glutened, that will come from experience. And your symptoms may change over time.

On another note, what style(s) of martial arts do you study? I've studied Shim-Pu-Ren (an offshoot of Butokukan) for a number of years, with a brief stint studying Tae-Kwon-Do.

[MartialArtist]

On another note, what style(s) of martial arts do you study? I've studied Shim-Pu-Ren (an offshoot of Butokukan) for a number of years, with a brief stint studying Tae-Kwon-Do.

I study a mixed martial art program with its roots in Tae-Kwon-Do. (It originated as a Tae-Kwo-Do school but the founder expanded the curriculum over time to incorporated techniques from multiple arts including some small-circle ju jitsu, some escrima stick fighting, some elements from American boxing, some from Thai kick boxing, etc.) I've been doing it for almost a year and a half. It's great fun and great exercise!

[proud-armywife]

In light of finding your post yesterday I started the task of cleaning out a cabinet that I will stock all the good foods you have suggested. I am moving onto the fridge today where I will claim a few shelves. I also made an appointment with the nutritionist a few weeks ago. So maybe I can come back with some good info I can share.

Yes the rumbling!!!LOL That is one of my side affects too! And nausea which I thought the anemia caused. I got a 1700mg infusion to get my blood levels back to a somewhat normal state-it worked great. All the other infusions only worked like a patch dropping away quickly. Anyways, that is when I felt the real tiredness of the disease and realized something else was really wrong. Thank you again for your response I am writing down your suggestions. My family comes from a line of chefs and when I figure this all out-I will have to share some Gluten free recipes with you all! Have a great day!