• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Help Please
0

9 posts in this topic

I am confused and hoping someone can help me understand what is going on.

I was diagnosed and undiagnosed several times 2 years ago; tested due to stomach, malnutrion, BRAIN FOG, etc... issues. In September of 2011 I went gluten free and stayed that way for a full year. I worked hard to be careful, but felt I was constantly getting accidentally contaminated because stomach symptoms would occur. I can't remember how my brain fog was affected (heavy sigh).

One day my stomach issues resolved. I can remember the moment it happened, the nauseau just went away after about 9 months. I continued to be gluten free until October of 2012. For some reason, I decided to go back to eating gluten and was not suffering stomach issues, which were my most debilitating symptom. This indicated to me that I didn't have Celiac. I then started having very severe brain fog and my nose started running that day and has never stopped. The brain fog this time was intense and impacting all areas of my life. I decided to go gluten free to see if that has an affect. Brain fog has improved dramatically, but I am dealing with all kinds of new symptoms now that I am gluten free like: rashes, huge blisters in my mouth, acne, and weak immune system.

My question is why now am I getting all these weird side effects? Is it because my system is clean and getting guttened causes this? Is it because I'm detoxing from going gluten free? I am so confused. I am not sure if gluten free is the correct course of action with all the side effects. Any experience in this area would be so appreciated.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Question 1 - your post is confusing. Were you diagnosed as a celiac by a medical doctor, or as gluten intolerant by a medical doctor ? How, exactly, does one get "undiagnosed" unless by medical incompetence ?

Then, after a year of sucessful gluten free, you decided to go back to eating gluten in October 2012. :ph34r: You didn't have stomach issues, so you thought you weren't celiac. But your brain re-fuzzed. :o

You've gone back to gluten free eating :) but, you're now getting all the skin issues. :(

My question is why now am I getting all these weird side effects?

What you have done is known as a "gluten challenge." If you really do have a "gluten problem" and go off of it for more than a few days, then resume eating gluten, the auto immune reactions to the gluten, over time, become stronger and stronger. The neurological form of gluten intolerance/celiac, which is notorious for brain fog, and the kind where your skin goes crazy if you accidentally eat gluten are linked, in my experience - even in my late fifties, often the first sign something went wrong in "That Restaurant Waiter Thinks This Customer Is A Fussy Eater Land" is that my face starts to break out like a teenager's the day after. :blink::angry:<_<

Even though you may not have eaten gluten for a while, when you hit the trip- wire Big Time on one of these auto- immune triggers, by eating lots of gluten for months, the episode can take much longer to resolve than a day or two. And what is worse, these auto immune flares send your who body into "Search and Destroy" any sort of odd thing it now thinks is "the enemy" in your leaky digestive track, and that, in turn, can give you at least a temporary reaction to things that you were eating before, and that you thought that you got along well with. :(

So, now that you have proven to yourself you do have a "gluten problem" (sorry about that, but look at the bright side, you'll never want to eat the stuff again after having a bad skin reaction) you can help yourself by eating more simply, plain whole foods only, and trying to avoid processed foods as much as possible. You may also have to avoid a few other types of foods, for at least a while, until you get better, then you can trying adding them back in, one at a time, cautiously, and see what happens. For instance, not many people realize that iodized salt now tends to have a grain based carrier for the iodine, and both can trigger skin flare ups during one of these attacks, so you may want to switch to un-iodized salt. If you have an indoors pet that jumps up on furniture, you may also want to get the pet on gluten free foods and accessories. Check your soaps, shampoos, conditioners, and lotions, also, in case you're in the group that reacts to not only wheat, but oats.

0

Share this post


Link to post
Share on other sites

I had foggy mind issues when I was eating gluten, and when I was withdrawing from gluten. I also had them when I was repeat- eating foods I was intolerant to. By repeat -eating I mean more than once every four days. At first when I got glutened the brain fog returned. Now, I get diarrhea instead. Come to think of it I had brain fog when I was constipated recently. I think I would rather have the diarrhea than the brain fog if I had my choice.

In other words:

My brain fog cleared when:

I quit drinking 100% juice fruit juice.

I cut out all empty sweets. I minimized fruit too.

I ate a balanced to protein to carb diet with small amounts of fat.

I took supplements for my deficiencies.

I cut out all gluten.

I cut out all grain.

I followed a rotational diet. (4 days after that the fog cleared and has not been back)

It took time.

This can get complicated. Now, I wouldn't expect you to put all of these into action in your life right away. However, I would suggest you consider all of them as you go. Don't give up until you have exhausted all of these angles. Probably don't even give up then. Everyone has a different set of circumstances.

Don't give up and I hope you will feel better soon.

Diana

0

Share this post


Link to post
Share on other sites

I personally felt really poor the first few weeks gluten free. Really poor. I think it was a withdrawl of sorts. It took awhile before I felt good. Hang in there. Many folks around here didn't feel better for months, or even years, depending on how their body heals. Patience seems to be a big factor when dealing with recovery,

Best wishes.

0

Share this post


Link to post
Share on other sites

Thanks everyone for replying, it really helped. I'm sorry my post was confusing, guess the brain fog has not completely cleared. Lol!!

As for being diagnosed and I diagnosed:blood test results would come back both ways so it was inconclusive. I had an endocrin. And gastro. Test me. Had biopsy and scope that indicated I was not celiac, but I had stopped eating gluten for over 6 months at the time. :).

I guess my test results are inconclusive, but my Brain Fog is the proof. I wish I didn't have the stomach sensitivity return when going back to gluten free, but I guess it's a swap for having a clear brain. :)

Best wishes to you all. Stay Healthy!

0

Share this post


Link to post
Share on other sites
Ads by Google:


It is my understanding that the blood tests are rarely wrong when they are positive, but I'm less familiar with them than some. I'm a weirdo who had multiple negative blood tests, but a positive biopsy. I guess it is great news that your biopsy was clean at 6 months! Keep at it, it's a journey not a just a sprint across a finish line. Don't let the new suckiness get you down, we all have our own suckiness to deal with but that is no reason to let this thing win. :D And hey, isn't it awesome being able to think your way out of a wet paper sack?

0

Share this post


Link to post
Share on other sites

It is my understanding that the blood tests are rarely wrong when they are positive, but I'm less familiar with them than some. I'm a weirdo who had multiple negative blood tests, but a positive biopsy. I guess it is great news that your biopsy was clean at 6 months! Keep at it, it's a journey not a just a sprint across a finish line. Don't let the new suckiness get you down, we all have our own suckiness to deal with but that is no reason to let this thing win. :D And hey, isn't it awesome being able to think your way out of a wet paper sack?

You are sure right about what you said. I mourned for the loss of gluten food a couple years ago; luckily I don't feel the need to do that again. Just working to stay the course. Everyone has their cross to bare, grateful God went easy on me, compared to others. :) Good luck in your journey, too!

0

Share this post


Link to post
Share on other sites

The only time you felt good in your life was when you were gluten free. Being gluten free is the correct course of action. You may also find you have issues with other foods too.

Celiac disease is multifaceted and while most people know it as the intestinal damage disease (including doctors) there can be skin immune reactions and neurological immune reactions and of course a plethora of symptoms that go with all those things.

Seeing as you aren't symptomless, I would take a positive blood test as a sign that your immune system reacts to gluten. Even if you were symptomless, and had 2 blood tests, one positive and one negative, the chances are that the negative one was the false one.

Don't feel dumb about what you did though, eating gluten again. I mean, it is something you shouldn't do and you're suffering the consequences now, but without proper information what you did was logical. In fact, when celiac disease was first diagnosed it was thought that it just went away for many people after awhile being gluten free, because just like what happened to you, they would try eating gluten again and their symptoms didn't return right away. We now know that that doesn't happen. Once you have it, you have it for life.

0

Share this post


Link to post
Share on other sites

The only time you felt good in your life was when you were gluten free. Being gluten free is the correct course of action. You may also find you have issues with other foods too.

Celiac disease is multifaceted and while most people know it as the intestinal damage disease (including doctors) there can be skin immune reactions and neurological immune reactions and of course a plethora of symptoms that go with all those things.

Seeing as you aren't symptomless, I would take a positive blood test as a sign that your immune system reacts to gluten. Even if you were symptomless, and had 2 blood tests, one positive and one negative, the chances are that the negative one was the false one.

Don't feel dumb about what you did though, eating gluten again. I mean, it is something you shouldn't do and you're suffering the consequences now, but without proper information what you did was logical. In fact, when celiac disease was first diagnosed it was thought that it just went away for many people after awhile being gluten free, because just like what happened to you, they would try eating gluten again and their symptoms didn't return right away. We now know that that doesn't happen. Once you have it, you have it for life.

Thank you, for saying it was Ok for me to make the dumb mistake. Just having someone understand where I was coming from, means so much to me, truly. Thank you. :)

I know that gluten free is the best for my health and I intend to stay that way. I accepted it before, so accepting it now is easy, especially when the consequences are so ugly. Thank you again for your kind words and logic. I wish I would have gone on here and got some advice, before I made that brilliant move. <_< Lesson learned.

Stay healthy!

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
      106,751
    • Total Posts
      932,195
  • Member Statistics

    • Total Members
      64,213
    • Most Online
      3,093

    Newest Member
    rrwalter25
    Joined
  • Popular Now

  • Topics

  • Posts

    • I wish they didn't use " gluten" as a headline.  People abuse and starve children for a variety of " reasons".  gluten-free was just one they picked, it could have been paleo or kosher or whatever... 
    • Ugh!  This again..... first ...it was one person...not a study... just someone's speculation. if I am remembering correctly - no one actually tested the retainer. The kid was a 12-16 yr old an drew could have gotten caught eating gluten, etc, etc, etc.   And then those internet folks who love to spread " bad news" or  use that stuff to further their purpose, jumped on it.  And then let's talk to a chemist or plastic scientist - if the plastic leaches our actual proteins, like gluten, wouldn't the plastic piece break down after a while? welcome to the world of Celiac internet myths.   adding - none of the Celiac Centers, Associations, etc have warned people not to use a retainers.
    • Ok, so, here goes. Today I had my teeth cleaned, and this was my first time there since I've been diagnosed. I double checked that their tooth polish is gluten free, and they told me it's safe. I feel fine. Tonight I was at Walmart looking at buying some mouth wash (I was scolded, as per usual), and I Googled gluten free mouth wash. I stumbled upon an article about gluten free products and dental stuff. The person mentioned a study that was released stating that a child's retainer was making her sick because it contained gluten - in the plastic. I had braces when I was a teenager and had them out about 12 years ago. I got one of those old school retainers. The kind with the plastic part for the roof of your mouth and the metal wire that goes around the front. It's cuuuuute. Let me tell you. Anyway, I decided to delve into this more, because I don't know if my retainer is safe now. I found an old thread on here where it looks like people were debating this, and for the most part, seasoned Celiac's agree that it's a bunch of bunk.  Do people have opinions? I know that many of you do a great deal of research into Celiac and that you may have some information. I'm looking for real science - not fear tactics. I wear my retainer religiously, My mom paid almost $5,000 for my teeth to look like they do, and I'm not about to let them get shnaggled again. I'm 29, but they still move if I don't wear my retainer. I've been debating getting a new one - one of the plastic ones that you can't really see, but I don't want to shell out the dough for that until I have to. I'm shocked mine has held up as long as it has.  When I was diagnosed back in November my TTG was >100. Two months later it was 12. So I assume that my little retainer isn't causing much damage, as that's pretty significant. I have to go back in July to have my blood tested again. In the meantime, is this something to stew over? I have no idea where my retainer was made, or who made it. It was a long time ago and I bet if I called my orthodontist to find out who the manufacturer was they wouldn't be able to tell me. Maybe I'm wrong. It was 2004 or 2005, so I'm assuming they won't know at this point. But I could check if people think I should. I feel fine, for the most part. But I was a silent Celiac when I was diagnosed so I don't trust my body to not tell me if I'm being glutened. I'll just say that.  Thanks!
    • They are awesome! But they are not available at Starbucks at some places--like hospitals. Pity!
    • Howdy, No stranger to forums as I've found them to be a great tool for my interests in motorcycles and old trucks but now find myself needing to educate myself in dealing with Celiac Disease. I'm a male in my fifties now and have had to deal with eczema since I was about six years old that was mostly contained to my feet and legs and outgrew it for the most part in my teens. I would have occasional flare ups but about three months ago my elbows and upper torso broke out in blisters and itched like no tomorrow. I hoped it would go away and used Cortisone for relief but finally made an appointment with the Dermatologist. As I'm sure most do, I began researching the internet since this outbreak seemed different than my eczema as a child, and wondered if DH was the culprit. When I showed the Doc and expressed my concern he said, "I have dozens come in that think they are Celiac and are not...but you, most likely are". He did two biopsy's, one for a local lab and the other he sent to the Mayo Clinic and a week later it was confirmed. At the time of the biopsy results I had been gluten-free for two weeks but to my surprise they told me to start eating gluten again as they wanted to do a upper GI scope and needed some lesions to biopsy. I took full advantage and formed a bucket list that ended with pancakes the night before the scope. Still waiting for those results that should come any day and started Dapsone the day after. They have me doing blood work weekly to start and I hope to be off that stuff within a year. My wife has been gluten-free for the better part of ten years as gluten and dairy just don't agree with her. This has been helpful to me since she knows what the good stuff is and we both do the weekly shopping together and so I've learned a lot already, I am somewhat concerned about hidden gluten though, so I still have much to learn. Looking forward to meeting other members of the forum.
  • Upcoming Events