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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Is Everyone Doing On Their Diet These Days?
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14 posts in this topic

Just thought it might be nice for folks here to share how they are doing in Super-sensitivity land!

How is your diet working for you these days? Do you feel like you have it figured out, don't get glutened anymore, or are you still struggling? Any other issues that you've discovered since you started searching for answers, or is gluten the main problem you have to contend with? Does it feel like things are going in the right direction, at least, or not so much?

And...guess I'll start it off. :)

I'm feeling pretty good, overall. My weight is fairly stable now and I am very close to a nutritionally complete diet, finally, woo hoo! I still have to be extremely careful to source my food, but so far, it's keeping me healthy.

My few food allergies are still present, but easy to avoid at this point, now that I know where they are used as ingredients.

My super-sensitivity is still kicking around, but I'm happy to say that the serious reactions are nearly a thing of the past. The first year gluten-free, they were monthly if not more often. This week, however, it will have been a year since I had a very serious gluten reaction! Low level ones still happen occasionally, but no serious, scary ones, and that makes me SO happy!

The sulfite sensitivity I discovered a few months back is confirmed as confirmed can be, although as mine involves naturally high sulfur foods and sulfates as well. This is frustrating in terms of figuring out why a reaction is happening, because it's quite similar to a gluten reaction to low levels of gluten (lots of neurological stuff).

It's also fairly common to have substances that are sulfited used in the same place as substances that are gluten derived/ cc'd, too. So figuring out whether a reaction is to gluten cc, to sulfites, or to potentially both is a real pain in the petutie. Slowly learning more and more, though.

Re: avoiding gluten, I've said before that I could never say for sure that all my reactions were to gluten, that I might find out someday that I'm avoiding something else when I'm avoiding the most minute traces of gluten.

Turns out, sometimes that 'something else' is sulfites and sulfur, like avoiding sulfur-containing soaps that are being used on organic greens as pest control aids. I kind of wish that it was sulfites only and NOT super-sensitivity to gluten, but so far, that doesn't tracked when I investigate it.

However, this whole thing has just cemented how I felt when I was first diagnosed with Celiac Disease after 20 years: we as patients need to trust ourselves.

If we do something and it makes us feel better or worse, we can investigate it, research it, analyze it, listen to opinions on it and whatever else gets us more information. But in the end, I truly believe that we need to trust ourselves and what our bodies are telling us more than doctors' opinions that we are 'healthy' when we feel sick, more than what we should be able to do or how we should react or even what seems reasonable to other people.

We're all different and we're all searching for answers and sometimes, we can find the solutions before we know exactly why those solutions even work. They may seem really weird to other people who aren't in the same place, but that doesn't mean they aren't the right solution for us, personally.

Or to quote one of those great Murphy's War Laws: if it's stupid but it works, it isn't stupid. :)

I hope that where ever anyone is at, in their diet, it is at least slowly getting better. Hope you are managing to react less frequently, feel better, and find more safe and tasty food all the time! :D

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Hey Shauna, good to see your post.

I'm not doing that well, but have had a new development. (Lupus.) But I'm doing better than I did before, and that's all I ever really wanted. I know I won't be like I was before in the Glory Days. (Yay Bruce Springstein!) I still have lots of piss and vinegar left in me (No malt vinegar though.).

xxx

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I'm not doing that well either. I get to feeling pretty good and then I will try something "gluten free" and I get zapped. It's happened several times over the last few months. I have to stay 99% unprocessed food or I will get zapped. It's hard and i'm so weary from intestinal pain, cramps and bloating. :(

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I'm not doing that well, but have had a new development. (Lupus.) But I'm doing better than I did before, and that's all I ever really wanted.

I'm so sorry to hear about the Lupus, Marilyn. Crud. As if Celiac wasn't enough. I'm really glad that you're feeling better, though. And that at least you know what's going on so you can figure out a battle plan for coping with it, yes? Better to be filled with piss and vinegar for this type of battle than sugar and spice! ;-)

Have you found a good support group for the Lupus, by any chance? I'm hoping your area has one that really works for you.

I'm not doing that well either. I get to feeling pretty good and then I will try something "gluten free" and I get zapped.

Darn it - I was hoping that you might be doing a bit better. Do you at least have enough foods to give you all your vitamins/nutrients now? Or are you still searching for more foods?

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I'm so sorry to hear about the Lupus, Marilyn. Crud. As if Celiac wasn't enough. I'm really glad that you're feeling better, though. And that at least you know what's going on so you can figure out a battle plan for coping with it, yes? Better to be filled with piss and vinegar for this type of battle than sugar and spice! ;-)

Have you found a good support group for the Lupus, by any chance? I'm hoping your area has one that really works for you.

Darn it - I was hoping that you might be doing a bit better. Do you at least have enough foods to give you all your vitamins/nutrients now? Or are you still searching for more foods?

Thanks, I am ok with food. as long as I stick with meat, fruit and veg, I am good to go. It's the packaged stuff that zaps me.

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Hello Shauna. Good to see you.

Like the others, it's strictly veggies, fruit, seeds and occasionally fish for me. Anything else and especially the processed products labeled 'gluten free' give me huge reactions. I've eliminated meat more for ethical reasons but I'm also not missing it.

The neuro I see also suggested eliminating all forms of msg, soy, caffeine, nuts and about ten other ingredients that are found in processed food and in some vegetables/fruit. He suspects that I also might have migraine associated vertigo (without the migraines) and these foods trigger the vertigo. I've been doing this for about a month now and I'm having no set backs. I haven't felt this good in about seven years and am looking at going back to work.

Life is great, again. Who would have thought possible in the those darkest hours where you can hardly drag yourself out of the house, to the bathroom, or anywhere else?

:)

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Not too well. Still trying to figure out what is bothering me and every time I discover something that causes problems I seem to get more sensitive. I think I've developed severe depression but whether gluten sensitivity is the ultimate cause or I just have it because I've been miserable for 4 years is hard to say, though some foods definitely seem to affect my mood in a negative way. I've stopped losing weight which is good. I'm 125 lbs which is the skinniest I've ever been (before I got sick I was at about 148) but I'm not particularly worried since I haven't dropped any weight in months and I've tried to add some more fat (mostly via olive oil) in my diet.

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Not too well. Still trying to figure out what is bothering me and every time I discover something that causes problems I seem to get more sensitive. I think I've developed severe depression but whether gluten sensitivity is the ultimate cause or I just have it because I've been miserable for 4 years is hard to say, though some foods definitely seem to affect my mood in a negative way. I've stopped losing weight which is good. I'm 125 lbs which is the skinniest I've ever been (before I got sick I was at about 148) but I'm not particularly worried since I haven't dropped any weight in months and I've tried to add some more fat (mostly via olive oil) in my diet.

I know that depression, Joe. I send you warm thoughts and big hugs and want to tell you that even though figuring it all out is damn hard, you'll get there in the end. It will be alright.

Kamma

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Gluten makes me very depressed. In it, I think that it is because this life is so difficult. After I get out, I realize that it was the gluten talking. I hope you can get out of it.

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Not too well. Still trying to figure out what is bothering me and every time I discover something that causes problems I seem to get more sensitive. I think I've developed severe depression but whether gluten sensitivity is the ultimate cause or I just have it because I've been miserable for 4 years is hard to say, though some foods definitely seem to affect my mood in a negative way. I've stopped losing weight which is good. I'm 125 lbs which is the skinniest I've ever been (before I got sick I was at about 148) but I'm not particularly worried since I haven't dropped any weight in months and I've tried to add some more fat (mostly via olive oil) in my diet.

Hang in there Joe. I'm starting to come out of a similar bad spell, though my depression tends to be more mild to moderate. If you haven't eliminated all processed foods yet, give that a try. For me it takes about 2-3 weeks on that type of diet to get over reactions caused by a lapses of discipline in which I try processed gluten free foods. The reverse also seems to apply. When I'm feeling good, I tend to dabble for a while without reacting but it eventually triggers a reaction over time as it adds up. The non-processed diet is a real pain and labor intensive but it sure feels worth it when the clouds start to clear and I feel better. I'm in the middle of a mild reaction now. Been trying some single ingredient processed foods like tahini and potato starch to help in recipies. Also been trying some cheddar cheese. So what caused the reaction? All of them? One of them? Two out of three? It can drive you nuts. I know I can be more scientific about introducing new items one at a time, but that really gets old after a while. Wanting to cut loose and just enjoy food like everyone else and then getting slammed when you just loosen up a little can be depressing in itself.

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I've been trying the SCD diet (although struggling with eliminating sugar). In general it seems to be helping but I'm at the beginning stages of the diet so can't eat much variety. I'm trying to introduce new foods but have had some issues with that (can't tolerate avocados or almond flour yet). I don't know what else to try so will continue with this diet. Also started taking a liquid multivitamin in hopes that I can digest it better. The first time I took it I felt like running around the house, so I take that as a good sign.

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The non-processed diet is a real pain and labor intensive but it sure feels worth it when the clouds start to clear and I feel better. I'm in the middle of a mild reaction now. Been trying some single ingredient processed foods like tahini and potato starch to help in recipies. Also been trying some cheddar cheese. So what caused the reaction? All of them? One of them? Two out of three? It can drive you nuts. I know I can be more scientific about introducing new items one at a time, but that really gets old after a while. Wanting to cut loose and just enjoy food like everyone else and then getting slammed when you just loosen up a little can be depressing in itself.

I know just what you mean. The limited diet can really grind you down, yeah? At times, it's to the point where I just feel like I can't stand it anymore, where I just want to 'loosen up a little' and I start thinking maybe all those times I reacted were just additive reactions or flukes or before I knew how to call up companies properly and it won't be so bad now if I try a couple new things.

And then I react and just wanna smack myself because the reaction is crummy and it's depressing to realize that no, you really couldn't loosen up like you were hoping. So, empathy hug. :-)

Oh, one thing that might help on testing the potato starch, though. Found a website a while back on how to make your own potato starch. It's actually really easy. We do it now whenever we make things with grated potatoes: http://homeschoolblogger.com/armoorefam/47426/

At least it might help you figure out if the starch bothers you in an of itself, or if that particular brand was the issue, yeah?

Some days, I wish we had those little tricorders they have in Star Trek that would just analyze every substance in something so we wouldn't have to do this by the 'eat and see if you're okay' method, you know?

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I'm not doing that well either. I get to feeling pretty good and then I will try something "gluten free" and I get zapped. It's happened several times over the last few months. I have to stay 99% unprocessed food or I will get zapped. It's hard and i'm so weary from intestinal pain, cramps and bloating. :(

I am having exactly the same problem. Currently, I've had a bad run which I am nearly certain is Post Cocoa Pebbles; the box has a big "gluten free" banner across the top, and the company says that there is no way that gluten can be in it, but it is the only new thing I've tried in weeks. It seems as though it builds up a bit before I have a reaction. I'm in my third day of misery. Has anyone else found a cumulative effect from a food -- finally having a major reaction over the course of three days or so?

Thanks,

Susan

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I am having exactly the same problem. Currently, I've had a bad run which I am nearly certain is Post Cocoa Pebbles; the box has a big "gluten free" banner across the top, and the company says that there is no way that gluten can be in it, but it is the only new thing I've tried in weeks. It seems as though it builds up a bit before I have a reaction. I'm in my third day of misery. Has anyone else found a cumulative effect from a food -- finally having a major reaction over the course of three days or so?

Thanks,

Susan

I have positively found a cumulative effect from food. It builds up and then causes a big reaction. I have reacted to Cocoa Pebbles too. Same with Chex. I am currently going through days of misery myself from Hershey's Cocoa Powder. - Never touching anything Hershey's again!

I hope you feel better soon. :)

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