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
      104,110
    • Total Posts
      919,434
  • Topics

  • Posts

    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,148
    • Most Online
      1,763

    Newest Member
    MichaelDG
    Joined