Tell it to me straight

Beth · Post by **Beth** » Mon Sep 05, 2011 9:48 pm

Hi all - you'd think after all of these years of managing (mostly) through diet, that I wouldn't need to ask this. But just tell it to me straight, anyway. After I've achieved a really strong remission from the flares for a good 6 months or a year, is it ever okay to knowingly eat gluten again? When I'm not in a flare, if I have just a little bit I have a very mild, almost unnoticeable reaction of cramping, no D. I'm asking because my husband's and my absolute favorite restaurant is a sushi place that I'm sure is a gluten minefield, even if I bring in gf soy sauce. To give up that restaurant would be really tough on both of us. I can always send him over there on his own, of course, but, well, it's just not the same.

Or, put another way, how strict do we really have to be? I didn't get any of the testing from EnteroLabs done - just stayed away from gluten since the difference without it was shocking after just three days off of it.

Thanks for your input . . .

Zizzle · Post by **Zizzle** » Mon Sep 05, 2011 10:17 pm

I'm struggling with the question of strictness. For the first year, I was so sensitive to gluten and casein, that I would bloat like a balloon minutes into the meal and be running to the bathroom within the hour. Now the D isn't so immediate, but the bloating is (I think), so I take that as my confirmation that I've eaten gluten or casein. That said, I've done OK at sushi restaurants (with GF soy sauce). This weekend I went to a pizza joint and had their GF pizza with no cheese - obviously a ripe opportunity for cross-contamination, but I was totally fine. Next up was a naked burrito at a taco joint - lots of no-nos in there, and again, I felt fine. I know I'm taking lots of chances that would be frowned upon by celiacs, but I assume I don't have celiac, which makes all this risk-taking OK, right?

There are lots of ways to rationalize all of this. I just choose to live my life as enjoyably as I can (within reason with the diet restrictions). We sacrifice so much when we take on this diet. We have willpower and determination that makes people think we are crazy. If we feel fine, is risk-taking such a big deal? I dunno.

Polly · Post by **Polly** » Tue Sep 06, 2011 8:29 am

Beth and Z,

For me, the answer is NO. Even though we don't have celiac, I had read some time ago that celiacs who continue to eat gluten run a higher risk of getting a small bowel lymphoma (cancer) in the future. So I worry that this could be the case with gluten sensitivity in general. Even if there is no higher risk for us, I would be concerned about knowingly continuing to expose my body to something that may eventually lead to numerous other autoimmune diseases. FWIW. That said, I do eat out fairly frequently. If I can't be sure how food will be prepared, I'll take my own, even a whole plate of food that I nuke before leaving the house.

Hugs,

Polly

sarkin · Post by **sarkin** » Tue Sep 06, 2011 8:30 am

I don't look at gut-rumbling and digestive symptoms as the whole picture. I now know that I was accumulating non-D symptoms and gluten-induced damage for many years, before nightmare D, and even if I never have D again, and am able to take risks, I would never intentionally eat a food that I *know for a fact* causes autoimmune problems for me. I have the Enterolab results, with the elevated anti-tissue transglutaminate levels, to remind me. Z, you have more reasons than I do (in the sense of more test-result evidence - and have you tried coconut aminos, btw?).

Beth, I think you could eat at that restaurant, and work out with the staff a few safe dishes. I have done that in lots of our local places, and have taken it on the road. It's a risk, but it's a lot safer than Russian roulette (putting a gluten bullet in the gun, pulling the trigger, and hoping you don't get explosive D, or neurological/joint/thyroid/etc. damage).

If "not having horrible diarrhea" is an acceptable health status to you, then you have already downgraded your expectations of health and life, IMO. And that's as bad a consequence of MC as any other, and in my opinion worse than not getting to eat the same crap that's making the rest of America sick in other ways.

I have a weird lump on my ankle, probably a ganglion cyst - and it is smaller and less painful than it used to be. I only remembered it because it was on my list of things to ask my doctor about. Dropping antigenic (to me) foods from my diet is the only reason I can think of why this would go away. I believe that for every positive outcome of the GF/*F diet that I can see, I may still be looking at unseen damage, not all of which is likely to be reversible at my age - but at least I can stop pouring fuel on the autoimmune, inflammatory fires.

But you knew I would say this, didn't you? Beth, I have to think this is what you wanted to hear, given the title of your post. So here it is - celiac/digestive stuff is *the tip of the iceberg* for gluten sensitivity. There are people who never present with digestive issues at all, who are suffering from multiple sclerosis, lupus, fibromyalgia, rheumatoid arthritis, thyroiditis, psychiatric illnesses, and many, many other health problems, known to be associated with celiac/gluten sensitivity.

Gluten is barely tolerated by many people who think they are tolerating it. We know that we aren't. Gluten is probably what sabotaged Venus Williams's career - I hope someone is telling her so.

BTW, Z, if anyone thinks I'm crazy for not eating like a fool, they are smart enough to keep it to themselves. If you have people in your life making you feel nuts for taking care of your health and not eating in a way you *know* is damaging, they need a little lesson in manners, and I'd be happy to come on down there. And also - didn't your doctor conclude 'celiac' was as reasonable a Dx for you? Where are you drawing the line between yourself and celiac? I'm not assuming that I do have celiac - I'm assuming the difference is irrelevant for me.

Stopping now... but ask me any time, I can go on at length, apparently

Be well,

Sara

mbeezie · Post by **mbeezie** » Tue Sep 06, 2011 9:25 am

I agree that we cannot go back to our gluten eating days. My reactions aren't as bad as they used to be either, but that's a reflection of some healing. I think if I went back to eating gluten it would only be a matter of time before all of the bad symptoms returned, and I have no interest in that.

Sara, I thought the same thing about Venus Williams. She's probably spending lots of money seeing "the best doctors" and it's quite likely that no one is mentioning diet to her.

Mary Beth

Kari · Post by **Kari** » Tue Sep 06, 2011 9:35 am

Hi Beth,

I discovered through Enterolab testing that I inherited a celiac gene from both my father and my mother, so I'm pretty resigned to never willingly putting any gluten into my body. My mother had colon cancer, and my 5 older sisters all suffer from major health issues (multiple strokes, heart attack, bone cancer, breast cancer, cervical cancer, and various other maladies). In addition to all of that, they all have some of the classic signs of gluten intolerance, such as extreme bloating, etc.

I feel so incredibly fortunate to have discovered the gluten connection before being hit by a major health calamity. My sisters all live in Norway, and I live in the US, but I have a feeling that even if I lived closer, I would still not be able to convince them to try dropping gluten - sigh. They listen to their doctors, and believe the blood test results, so my voice does not carry much weight. I have told them about my "discovery" about the genes, as well as how much better I feel sans gluten, and, unfortunately, that's about all I can do.

I used to eat out at least once a day when I lived in NYC (35 years), and have had to learn to prepare my own food over the last year, and now seldom eat out. So I do miss it a lot. No matter how hard I try, learning to enjoy my own kitchen is not coming to me easily :(. I have actually considered taking cooking courses to see if I can get a bit more enthused about it. I truly understand your dilemma about your favorite restaurant. However, with talking to the Chef, and explaining your issues, I have to believe that he can accommodate you? Many here find that using the "celiac" word get people's attention, so you might want to try that. Lots of luck with this.

Love,
Kari

P.S. Thanks for giving me the opportunity to "vent" a bit with your question

.

Beth · Post by **Beth** » Tue Sep 06, 2011 10:38 am

This is such an important discussion for me. Thanks, everyone, especially Sara, for adding in your comments. I think it can be really hard to feel that I have to be incredibly strict when I feel great! These days, even when I'm having D, it's usually only a couple of times a day, and my energy and mood is still fantastic. BUT, I was sick with crazy fatigue for more than ten years, which I attribute to an anti-depressant I was on, and during that time became quite ill with MC. So, I'm in no way interested in perpetuating poor health. I'm just trying to wrap my mind around just how strict I need to be. And we all know that the amount of food around us chock full of sickeners is quite staggering. For example, I went to a fair in Woodstock, CT this past weekend and was shocked at the hundreds of booths selling food-like products, all filled with gluten, deep fried and topped with cheese or powdered sugar. Of course, I brought my own food and left the fair grounds to eat in the car. That kind of thing isn't a big deal to me since even the thought of that kind of food makes me feel sick. It's the more lovely things that still hide gluten in them, like my favorite eel rolls, that I have a harder time avoiding, especially when I'm feeling great. Are there any other links you can point me to that confirm just how damaging gluten is? I'm sure there are a million, but I get annoyed with the hysterical voices out there. No hysteria, just facts, please.

And Polly, thanks for that little fact out lymphoma. I didn't know that. One more reason to be very careful.

Kari - thanks for adding your voice in here. I completely understand the need to vent! It looks like everyone around us can eat whatever they want and we have to change our lives for this thing. Good thing we have each other to remind ourselves that we're not alone. And cooking lessons sound like a great idea! Let us know what you discover . . .

Kari · Post by **Kari** » Tue Sep 06, 2011 10:52 am

Hi Beth,

http://www.holdthetoast.com/content/rev ... liam-davis

This was a link posted here recently that I particularly liked. The good information is in the second half of the blog, but it's worthwhile to read the whole article. I'm thinking of getting the book (Wheat Belly) - wish I could get it in Norwegian and send it to my sisters ..............

Love,
Kari

Polly · Post by **Polly** » Tue Sep 06, 2011 10:54 am

Me three, Sara and Mary Beth. I read the article this morning about Venus Williams' career being sabotaged by Sjogren's disease and had the same thought. She probably has undiagnosed gluten sensitivity.

Polly

Post by **tex** » Tue Sep 06, 2011 11:04 am

Hi Beth,

I have to agree with the responses you have already received. To add some substance to what Polly said, consider this quote from a blog, (which Joan recently posted a link to), by Dr. Hyman, titled Gluten: What You Don’t Know Might Kill You

This study looked at almost 30,000 patients from 1969 to 2008 and examined deaths in three groups: Those with full-blown celiac disease, those with inflammation of their intestine but not full-blown celiac disease, and those with latent celiac disease or gluten sensitivity (elevated gluten antibodies but negative intestinal biopsy).

The findings were dramatic. There was a 39 percent increased risk of death in those with celiac disease, 72 percent increased risk in those with gut inflammation related to gluten, and 35 percent increased risk in those with gluten sensitivity but no celiac disease.

This is ground-breaking research that proves you don’t have to have full-blown celiac disease with a positive intestinal biopsy (which is what conventional thinking tells us) to have serious health problems and complications–even death–from eating gluten.

That implies that if we don't properly address our gluten-sensitivity, our increased risk of mortality is approximately double that of celiacs. All of the red emphasis is mine, of course.

http://drhyman.com/gluten-what-you-dont ... ll-you-11/

Here's a link to the full study, if you want more detail:

http://jama.ama-assn.org/content/302/11/1171.full

And, I agree with Sara and Kari that the chefs at any decent restaurants will be more than happy to work with you, to insure that your meals there are safe. Since you're talking about frequent visits to a single restaurant, that makes it much easier - you will only have to collaborate with the chef once, and after that, you will only have to ask the waitperson to give your name to the chef, so that he or she is aware of who they are preparing the food for. Eventually, the waitstaff will all recognize you, and they will automatically make sure that your food is safe. Trust me, good restaurants don't want sick patrons - that's not good for business.

The bottom line is, a little gluten now and then is certainly not going to kill us on the spot, but we have no way of knowing how much damage it might be doing that might come back to haunt us someday. The risks include additional autoimmune diseases, and lowered life expectancy - topics that will be a lot more important as we get older, but at that point, unfortunately, we won't be able to turn back the clock, to undo any permanent damage that we may have accrued. Is it worth the risk? Well, probably not, since we know how to easily avoid the risk. In a case such as you've described, we can have our cake and eat it, too, simply by collaborating with the chef.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Tue Sep 06, 2011 2:17 pm

my 20 cents worth......

regardless of if you have an IBD or not, any foods or drinks that cause 'stress' on your body whether it be causing inflammation or damaging villi or a histamine reaction, these reactions are putting stress on your gut and other organs like liver or kidneys.

for me i look at it as a reaction is a reaction, and it is putting the body under stress.
I have worked really hard to repair the leaky gut and villi, so my digestion is healthy and able to absorb the maximum amount of nutrients from foods.
you may not have a noticeable reaction to things like Gluten or Dairy after abstaining for a long period, but there will be some sort of reaction

with all the 'additional' health issues that come with an IBD and auto immune condition, like the teeth, bones, thyroid, and a multitude of others, i believe we have to nurture our bodies and do everything we can minimise it being under stress.

Beth · Post by **Beth** » Tue Sep 06, 2011 6:43 pm

Excellent information. I'm convinced. And grateful to you all.

Have a good night!
Elizabeth

sarkin · Post by **sarkin** » Tue Sep 06, 2011 9:06 pm

Elizabeth,

I really appreciate the quality of your 'listening' in framing this thread in the way you did, and absorbing all the different viewpoints you received. And I truly believe (and hope) that this whole process just got easier for you. It did for me, at that moment of certainty or clarity or - being convinced. That probably didn't happen overnight, though it feels that way in retrospect. But I still hope you wake up "across the divide" (which is where my best friend says I dwell now - you know, that distant shore, from her point of view, where pastry isn't a food group...)

Be very well, and eat very well and joyfully,

S

Bifcus16 · Post by **Bifcus16** » Tue Sep 06, 2011 9:31 pm

Beth,

Have a read of this discussion of the relationship between gluten and Multiple Myeloma.

http://margaret.healthblogs.org/life-wi ... c-disease/

MM is a form of Non-Hodgkins Lymphoma. I already have some dodgy blood test results, and the risk of progression to MM ( or a closely related condition) is very real. I am absolutely convinced that GF is important to enhancing the likelihood that I will have a long healthy life.

That doesn't stop me sometimes making poor decisions, such as taking risks (never certainties) when eating out. Lets face it, I also make poor decisions (as well as good ones) in other areas of my diet and life in general. I missed the sainthood gene.

I can't life my life in fear. I cannot be constantly scared of gluten. The risk of contamination is all around me. But I am not going to intentionally consume the stuff. I actually think of it as poison. I figure that it is one of those situations where I just gradually keep on getting better. Hopefully that will be enough.

So, can you find a recipe for eel rolls?

Lyn

Gabes-Apg · Post by **Gabes-Apg** » Wed Sep 07, 2011 2:21 am

Sara
to add to your post, we all make the huge adjustments to our lives to live with MC, where we shop, our eating plans, interaction with family and friends, what clothes we wear, work, church etc etc in moments of tiredness it is easy to think, is it worth it?

as Lyn mentioned in her post, it is not good to live in fear, we have to find the 'happy medium' of management and control that works for each of us

before my recent scopes to had some bread to test what would happen. It wasnt the BM reaction that got me, it was the joint aches and heavy cloudy head that got me, it reminded me of how i felt pre diagnosis and finding this site and a key reminder of why i dont want it, IMO anything that causes your whole body to react is a poison.

and our 'particularness' regarding ingredients /foods and avoiding contamination is justified.