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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.

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5 posts in this topic

I have been grain free for 3 months and gluten free about 5. I am experiencing what seems to be reactions to being near gluten flour, barley grass, airborne mini donuts... I get frequent rashes.

I keep hearing that people are more careful when they first begin.

Do people keep have reactions at the same level as they continue healing? Is more caution necessary in the beginning? Are people careless is time goes by or is there a slackening of symptoms. Is there a lessoning of susceptibility? Or do reactions increase in severity as the immune system recovers? Earlier for me that sure seemed to be the case. Now, I am not sure. We are doing better at keeping things away.

If I just keep consuming other allergens will I heal anyway? If gluten seems to be the main root, do I need to try to figure it out or will things work out in the end? Or will failure to omit all intolerated foods from the diet result in failure to heal all together?

Maybe nobody can answer these, but I decided to go ahead and post them anyway.

DT.

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I seemed to get sensitive to lower levels of gluten as time went on. I kept having to learn more and more about where it might be. Keeping a record of what I eat and how I feel has been very helpful. It can take awhile to figure it all out.

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I am still relatively early in the healing process, but here are a couple of things I have heard from others.

While you may not necessarily become more sensitive to gluten in regards to physical intollerance, the further removed you are from consuming gluten and the consequences that go with that, the less normal it feels to be sick. There is a certain level of discomfort that you have likely become unconscious of because it is simply "the way things are"... every day. As you heal and that stops being the way things are, you become more aware of it when small amounts of gluten make you sick. I honestly don't know of the actual intollerance level changes.

Also, I am not sure if consuming other foods that you are intolerant to will altogether hinder the healing process, but it seems a significant risk. Those foods may cause serious inflammation. And I certainly can't imagine that helping the healing process. Going with the assumption that eliminating all those other intolerances will "help my digestive system heal," I am making that sacrifice for the time being. I figure it's worth it. And if some of those foods become options for me in the future (like dairy after my villi recover), I will probably just appreciate them that much more after a time without.

My husband and I have just started a program called the "Whole 30" that has done wonders for other Celiacs (including my dad; it also did wonders for his non-celiac wife, for that matter). No dairy. No grains. No sugars. No legumes. No processed foods. Whole, unprocessed foods are actually really good anyway. :)

So, that's my two cents. Most things aren't worth the risks and the little sacrifices tend to pay off in the end.

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Thanks, I am muddlin through. Today I am feeling great, but what if anything did I do different????

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Do people keep have reactions at the same level as they continue healing?

It seems to be somewhat individual. I have a few Celiacs in my family, so I got to see a range of reactions, so to speak. My brother's reactions got a little bit worse over the span of a few months on the gluten-free diet. My father's reactions got worse over the span of about 5 years on the gluten-free diet. Enough that he went from being a Celiac who cheated periodically to one who does not anymore, due to the increased discomfort.

My daughter had a sudden jump in the severity of her reactions right around the 6 month mark of her gluten-free diet. And I start reacting much more severely within days. My daughter and my reactions have remained at this heightened severity for over 2 years now, and according to my last endoscopy, I'm fully healed. So at least for me, healing did not improve the severity of my reactions. :-(

Although I should mention that most of my reaction is neurological - I get no real gut symptoms that I can tell. So that might make a difference.

Is more caution necessary in the beginning?

I don't believe so, no, but I don't know if that applies for everyone or not. For myself and the other Celiacs in my family, that hasn't been the case.

Are people careless is time goes by or is there a slackening of symptoms.

Depends on the person. Some people start off very, very careful and then slowly relax until they find their safe zone, where they know they are not reacting. Some of us have to do the opposite and become more careful because we can't seem to get well - a lot of us super sensitive folks end up in that category.

I have also heard, historically, that sometimes, Celiac children would heal and after a period of time, when they ate gluten again they would have no symptoms at all. Sadly, they were still taking damage, their symptoms just disappeared. So doctors used to think that you could outgrow Celiac Disease and these kids were given gluten again. Years later - around now - many of these adults are now very ill because they've been damaged all these years. :-(

So I guess the moral to that story is that symptoms don't always equate with damage.

Is there a lessoning of susceptibility? Or do reactions increase in severity as the immune system recovers?

As far as I know, there's no known answer to that. For me, it has been the latter. Not only for Celiac Disease, but also to allergies/intolerances that I wasn't even aware I had. I started reacting like gang busters once I went off the gluten, like my immune system finally had enough nutrients to work and was making up for lost time!

If I just keep consuming other allergens will I heal anyway? If gluten seems to be the main root, do I need to try to figure it out or will things work out in the end? Or will failure to omit all intolerated foods from the diet result in failure to heal all together?

According to my GI doc, many of his patients' healing was hampered if they consumed other allergens while they were trying to heal from Celiac Disease. I think I recall a small study on refractory Celiac Disease that found that a percentage of patients who were diagnosed with Refractory Celiac Disease actually had a food intolerance or allergy instead, so I assume that means that it is possible that a major food allergy or intolerance might prevent healing.

I know a lot of people focus on the gluten at first, because that is a lot of work to figure out and it can be overwhelming to work on that AND other foods at the same time. But some of us couldn't get better until we found everything that we reacted to, so we tried both.

One thing that helped me a lot was keeping a food journal. I recorded what I ate, when, how much, and how I felt afterward. It helped me narrow down a few reactions.

One thing that I noticed while doing this was that if I reacted to one brand of a food but not another, there was usually a contaminant involved. The same applied for produce from different farms, or conventional vs. organic foods (they often contain foods processed with different chemicals, or different ingredients entirely). If I reacted to all varieties and brands of something, then it was usually the food itself that was the issue.

Good luck!

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