Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Super Sensitive. Or
0

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,332
    • Total Posts
      920,431
  • Topics

  • Posts

    • I would like to ask if anyone has eaten puffed rice from Arrowhead Mills.  My daughter, who has celiac, wants to eat it and I am looking for advice.  The only ingredient is rice, but they do not test the product so do not label it gluten free.  I called the company and they say they clean all their equipment between each product, but since they don't test it cannot label it as gluten free.  Would you allow your daughter to eat this product?
    • He might have celiac disease (or just the start of it).  He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it.  He might have other food intolerances (milk, dyes, etc.).  You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.).  Trialing a diet is fine, even a gluten free diet, when you ruled out everything.  But you have that quirky TTG result.  I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation.  An allergist is not a celiac expert nor is primary care doctor.  You should get a referral to a Ped GI.  If she/he suggests a gluten-free diet, then fine.  Because if he improves then, the GI will give you a diagnosis.  By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy.  This case is not clear and that is a bummer.   The cure is the diet.  But he will be going to school and a diagnosis will pave the way for accommodations all the way to college.  And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing.   This is his life and yours.  You must do what is best for your family.  I wish you well and we are here to support you.  I care.  I am mom.  
    • This just published: Highlights   • Kernel-based gluten contamination in oats skews gluten analysis results. • Grinding inadequately disperses gluten to allow a single accurate analysis. • Lognormal distribution of the test results renders a single test unrepresentative.   Abstract Oats are easily contaminated with gluten-rich kernels of wheat, rye and barley. These contaminants are like gluten ‘pills’, shown here to skew gluten analysis results. Using R-Biopharm R5 ELISA, we quantified gluten in gluten-free oatmeal servings from an in-market survey. For samples with a 5–20 ppm reading on a first test, replicate analyses provided results ranging <5 ppm to >160 ppm. This suggests sample grinding may inadequately disperse gluten to allow a single accurate gluten assessment. To ascertain this, and characterize the distribution of 0.25-g gluten test results for kernel contaminated oats, twelve 50 g samples of pure oats, each spiked with a wheat kernel, showed that 0.25 g test results followed log-normal-like distributions. With this, we estimate probabilities of mis-assessment for a ‘single measure/sample’ relative to the <20 ppm regulatory threshold, and derive an equation relating the probability of mis-assessment to sample average gluten content.   The full article can be accessed at Gluten Free Watchdog if are a subscriber.
    • If I may say something right now, the suggestions, advice, and information provided to you in this forum is just that: suggestions, advice, and information.  What has been provided can be used as tools to help figure out what is going on.  Please don't go away disgruntled or too frustrated.  There have been times myself when advice and suggestions was given to me, and I was not sure what to do about all the information.  I had to think and pray on it before I could act on it because my brain was functioning enough to do something about it right away.  It was on survival mode.  Forgive me if I am wrong, but I believe this is where you are at right now.  You are not sure where to go or what to do, so your body is just doing what it can to function day in, day out.  If this assumption is correct, I GET IT!  It is not fun, neither is it easy. Don't give up.  Things will get better.  Take all of this information and go to your primary doctor to see if you both can put your heads together and figure this out.  The answer may not come right away, but be patient.  it could be everything coming at you at once that making your body go into hypersentive mode.  I don't know, because I am not in your situation.  Until you go to the doctor, do what you know to do and God will take care of the rest.  There is something that has kept me sane through this past year: It will be okay because God is in control.  He knows what is happening to you and your future is going to be.  When you have a good day, enjoy those moments.  When you have a bad day, bring back to memory those good days and see if you can do something for another person.  I have found this year that if I focus on someone else through the bad times especially things don't seem as grim. I will be praying for you.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,387
    • Most Online
      1,763

    Newest Member
    Jaimesmile
    Joined