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

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:

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




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
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,656
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined