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

Scared To Death
0

22 posts in this topic

Hi all,

 

I was diagnosed with Celiac back in the summer of 2011 (my symptoms were mostly neuro), and I had been doing pretty decently on the gluten-free diet. Over the past 9 months or so, however, I have had more issues. I've done a couple of posts about them if you want to read further (didn't want to make this one that long). Basically, I have been having large, urgent bowel movements every morning, where it feels like i'm crapping everything out I ate the day before. My stomach has been almost always upset, and I have also been having neuro issues. For example, I was having a lot of dizziness late summer last year, but that seemed to subside. More recently, I have had tremors / weakness that seem to get worse right after my morning BM(s), and only really occur when using the muscles involved. They seem to be worse on my right side. I went to see a chiropractor recently that specializes in functional neurology that told me "Well, I don't think you have a brain tumor", and didn't seem super concerned.

I have played with my diet a lot over the past several months, removing all grains and dairy, and then getting frustrated thinking they weren't working, so adding them back in. (I'm now again going grain-free dairy-free day 5). Anyways, I guess my main question is, has anyone had any neurological issues that have come along with other food intolerances? I'm really hoping this is what it is, but I'm also starting to freak out thinking it may be a tumor or something. Also, has any one had a positive experience with "functional neurology"? I want to believe it's going to help me, but I'm skeptical because nothing has yet.

Thanks in advance for any help that can be provided!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi all,

 

I was diagnosed with Celiac back in the summer of 2011 (my symptoms were mostly neuro), and I had been doing pretty decently on the gluten-free diet. Over the past 9 months or so, however, I have had more issues. I've done a couple of posts about them if you want to read further (didn't want to make this one that long). Basically, I have been having large, urgent bowel movements every morning, where it feels like i'm crapping everything out I ate the day before. My stomach has been almost always upset, and I have also been having neuro issues. For example, I was having a lot of dizziness late summer last year, but that seemed to subside. More recently, I have had tremors / weakness that seem to get worse right after my morning BM(s), and only really occur when using the muscles involved. They seem to be worse on my right side. I went to see a chiropractor recently that specializes in functional neurology that told me "Well, I don't think you have a brain tumor", and didn't seem super concerned.

I have played with my diet a lot over the past several months, removing all grains and dairy, and then getting frustrated thinking they weren't working, so adding them back in. (I'm now again going grain-free dairy-free day 5). Anyways, I guess my main question is, has anyone had any neurological issues that have come along with other food intolerances? I'm really hoping this is what it is, but I'm also starting to freak out thinking it may be a tumor or something. Also, has any one had a positive experience with "functional neurology"? I want to believe it's going to help me, but I'm skeptical because nothing has yet.

Thanks in advance for any help that can be provided!

 

Not sure you really want to know what I think about this newest "sub-specialty of chiropractors"...

and I would hardly leave any diagnosis about my brain or neurological system to a chiropractor who is "guessing what may be going on". Please, go see a neurologist. Chiropractors are not medical doctors and should not be diagnosing people. (and my own chiropractor agrees with this statement)

 

http://www.sciencebasedmedicine.org/chiropractic-neurology/

0

Share this post


Link to post
Share on other sites

 I guess my main question is, has anyone had any neurological issues that have come along with other food intolerances?!

Most of my reactions to ingesting soy  are neurological

0

Share this post


Link to post
Share on other sites

IrishHeart - Thank you, I will look into seeing a neurologist. I did fail to mention that I had a CT scan done last summer, when I started feeling "off" (dizziness, fogginess), and it came up clear. Something would've shown up at that point since I was symptomatic, right?

achill - I've been soy-free for about 2 months now

0

Share this post


Link to post
Share on other sites

IrishHeart - Thank you, I will look into seeing a neurologist. I did fail to mention that I had a CT scan done last summer, when I started feeling "off" (dizziness, fogginess), and it came up clear. Something would've shown up at that point since I was symptomatic, right?

achill - I've been soy-free for about 2 months now

 

Hon. I'd get a second opinion, if your symptoms are worse and you are sure you are entirely G F

0

Share this post


Link to post
Share on other sites




Hon. I'd get a second opinion, if your symptoms are worse and you are sure you are entirely G F

Yup, my antibodies were completely within normal range. I will definitely look into a second opinion. It just seems that everything is linked to my gastro symptoms - direct correlation between those and other neuro symptoms. I've also had bouts of itchy skin and some flushing going on, which makes me think it has to be something dietary causing all of this.

0

Share this post


Link to post
Share on other sites

Yup, my antibodies were completely within normal range. I will definitely look into a second opinion. It just seems that everything is linked to my gastro symptoms - direct correlation between those and other neuro symptoms. I've also had bouts of itchy skin and some flushing going on, which makes me think it has to be something dietary causing all of this.

 

 

well, it is interesting that I have responded to this thread, because Itchy skin and flushing and neuro symptoms....may mean this (read the link)

(But I am not a doctor, remember...) and if going grain free and dairy free did not help, it could very well be another  intolerance (like  histamine intolerance )or something called MCAS..read this, please

 

http://www.celiac.com/gluten-free/topic/105835-mast-cell-activation-syndrome-mcas/

0

Share this post


Link to post
Share on other sites

Hello  

this  could  be  almost  anything  so  don't  put the  cart  before the horse......breathe !!!!  Have  you  had  some  very  recent  blood work  done? I have  a friend  who had  similar  things  going on  &  it  was  pre-diabetes  &  other  foods  causing  the issues.... plus  for  some it  takes  years  before  they  finally  see  their  intestines  calming  down... For instance  some  foods    don't  bother me  eating them  alone  but if  I add  another food  with it  I'm ill.......

I do  agree that  a  chiropractor  isn't  a  doctor --------- who  should  be  dx'ing a  brain tumor!  That is  insane.....

I  do know  corn, soy, msg, sulphites   can play havoc  ... also  are  you staying  away from  the  gluten-free processed  foods?  GMO"S?????  These  all  seem  to  do more  harm  than good  for us....

1

Share this post


Link to post
Share on other sites

Hi! I actually am experiencing something similar. For the last 3 weeks, I have been having alot of nausea (it wouldn't come out either end). However, the nausea would attach itself to the second week adding light headed/dizziness. Then the 3rd week my joints have been feeling really week. My doctor has tested me for the HRO virus (I believe its called) she said its from meat. Its a stomach virus that also weakens your immune system sometimes. She also tested me with aNa which is for joints I believe. These symptoms she told me can be due to inflammation or an autoimmune disease like lupus or it can be arthritis. End of last week my legs have been hurting so when I Go to the dr Thursday to get my test results if they come back negative then I will ask her about Fibromaylagia. When I looked online I had alot of those symptoms. Maybe you can ask your doctor about it too. I know that having to go gluten free can cause or trigger revelations of autoimmune diseases to appear in our system. When this all started to happen to me I assumed it was from dairy since I had increased my dairy now I can say it isn't. However, I think being gluten-free we automatically assume it must have to be food related but it may not be. 

Hi all,

 

I was diagnosed with Celiac back in the summer of 2011 (my symptoms were mostly neuro), and I had been doing pretty decently on the gluten-free diet. Over the past 9 months or so, however, I have had more issues. I've done a couple of posts about them if you want to read further (didn't want to make this one that long). Basically, I have been having large, urgent bowel movements every morning, where it feels like i'm crapping everything out I ate the day before. My stomach has been almost always upset, and I have also been having neuro issues. For example, I was having a lot of dizziness late summer last year, but that seemed to subside. More recently, I have had tremors / weakness that seem to get worse right after my morning BM(s), and only really occur when using the muscles involved. They seem to be worse on my right side. I went to see a chiropractor recently that specializes in functional neurology that told me "Well, I don't think you have a brain tumor", and didn't seem super concerned.

I have played with my diet a lot over the past several months, removing all grains and dairy, and then getting frustrated thinking they weren't working, so adding them back in. (I'm now again going grain-free dairy-free day 5). Anyways, I guess my main question is, has anyone had any neurological issues that have come along with other food intolerances? I'm really hoping this is what it is, but I'm also starting to freak out thinking it may be a tumor or something. Also, has any one had a positive experience with "functional neurology"? I want to believe it's going to help me, but I'm skeptical because nothing has yet.

Thanks in advance for any help that can be provided!

0

Share this post


Link to post
Share on other sites

IrishHeart - Very interesting, indeed. thank you, I will check this out. I've actually had several people mention this to me, and I have about 8 of the 12 symptoms listed there. I will say that grain-free seems to alleviate the itching a good deal, and makes me a bit less foggy in general. Thing is, I was grain-free for about a month or so before (still eating quinoa), and it seemed to help at first but then things didn't keep improving. I've heard that ppl. are supposed to cut things out for 3 months. could it really take that long to get back to normal bms and feeling healthy?

Mamaw - thank you for the support. the chiro actually said he didn't think it was a tumor after doing a bunch of neuro tests on me. I'm just upset because nothing seems to be working, and I'm tired of jumping from doctor to doctor wondering if they can actually help me. I've cut out pretty much all of what you mention at this point (although, had some mango with sulfites last few days).

 

itsmebiancap - thanks for response, I don't think it's a virus b/c i've been dealing with this for about 8 or 9 months now. I will certainly look into the possibility of other autoimmune disease. It just seems like when I'm pooping more (sorry no other way to put it haha) the other symptoms (itching, dizziness, neuro) are worse, which leads me to think it's something i'm eating, especially because some days are better than others, and some symptoms go away and then come back... although I'm sick pretty much all of the time now, ugh.

0

Share this post


Link to post
Share on other sites

Oy, this sounds familiarish. I had a terrible time trying to figure out what was causing my dizziness/nausea a couple years ago, convinced it was something up with my inner ear, did a slew of tests with the ENT which all came back normal. His conclusion: "There's nothing wrong with your ear.... Maybe you should see a neurologist." Great.

So I looked at diet. I cut back on salt, cut dairy completely, and eventually had to cut soy as well. I get bad neuro symptoms with soy. Dizzy, achy, tingly, not to mention the anxiety. No fun at all. I also have trouble with too much of some things (brown rice, beans, quinoa, lentils, etc etc etc)

I'd reccomend getting bloodtests done to make sure you're not low on anything like iron, Vitamin B12 (which I've been taking more regularly and is helping a lot!), etc. I also take a lot of ginger for the nausea, and there does seem to be a point where it stops working and just gives you heartburn instead (I still swear by it). Digestive enzymes and probiotics might also help

Can't offer any advice about the itching.

 

In any case, hope you can figure it out and feel better. Nausea SUCKS! Though I always say, that for someone who feels nauseous most of the time, I've got a pretty strong stomach.

 

Good luck!

0

Share this post


Link to post
Share on other sites

Just  another  thought... Read the book Grain Brain......very interesting......feel better  soon... I understand  how  annoying  this all is....it  can drive one crazy.. Eleven years  ago I was  D'xd  with  ALS (A death  sentence)  a Few  weeks  later  I went  gluten free...... I'm still here! So  I'm  not  sure  if  I would be  the oldest  living  survivor  of ALS  or  I  don't  have  it!!!  I'm okay being  gluten-free   so I never look  back.....yes, light  at the  end  of the tunnel....

I know  this  may  sound  strange  but get  checked  for H-Pylori

0

Share this post


Link to post
Share on other sites

I have neurological problems but from diabetes. But... Some of my food intolerances are weird ones. Mint for example. Makes my teeth sensitive and gives me stomach pains. Cloves and oats make me itchy. Dairy causes big D and if I continue to eat it, sinus and ear infections. But eggs? They rip me up so much inside, coupled with big D that I wish I were dead! If I were you I would get tested for food allergies and intolerances. Can be tough to find someone to do the testing though. You might also run your food intake through something like the Cron-O-Meter. And look at you supplements. I was lacking in some things but taking far too much of some B vitamins, making the neuropathy worse.

0

Share this post


Link to post
Share on other sites

Thanks all for support. I will look into grain brain, although I am very skeptical of those books, there are a million of them and they all claim to support the "right" diet. As of now, I am grain-free (including quinoa) and dairy-free. I have had a food intolerance test done, called the Mediator Release Test. I am very skeptical of this too. Anyone heard of it? Nothing seems to be working! I had a huge BM again this morning and my right side feels weak and weird, which is where my tremor seems to be dominant. I've thought about it a lot ever since it was noticed at the chiro appointment, and it's really starting to freak me out.

0

Share this post


Link to post
Share on other sites

Thanks all for support. I will look into grain brain, although I am very skeptical of those books, there are a million of them and they all claim to support the "right" diet. As of now, I am grain-free (including quinoa) and dairy-free. I have had a food intolerance test done, called the Mediator Release Test. I am very skeptical of this too. Anyone heard of it? Nothing seems to be working! I had a huge BM again this morning and my right side feels weak and weird, which is where my tremor seems to be dominant. I've thought about it a lot ever since it was noticed at the chiro appointment, and it's really starting to freak me out.

 

 

a "mediator release test" is not going to diagnose anything, hon, Sorry.

 

There are NO valid tests for food intolerances.

 

http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/allergytests.html

 

And from the the American Academy of Allergy, Asthma and Immunology (AAAAI) Practice Paper, Current approach to the diagnosis and management of adverse reactions to foods [PDF]:

http://www.sciencebasedmedicine.org/igg-food-intolerance-tests-what-does-the-science-say/

 

From the European Academy of Allergy and Clinical Immunology [4.2.2.9. Nonstandardized and Unproven Procedures; Guideline 12:

 

The (Expert Panel) recommends not using any of the following nonstandardized tests for the routine evaluation of IgE-mediated (food allergy):

  • Basophil histamine release/activation
  • Lymphocyte stimulation
  • Facial thermography
  • Gastric juice analysis
  • Endoscopic allergen provocation
  • Hair analysis
  • Applied kinesiology
  • Provocation neutralization
  • Allergen-specific IgG4
  • Cytotoxicity assays
  • Electrodermal test (Vega)
  • Mediator release assay (LEAP diet)

 

Read the science, hon and stop wasting your money on unproven tests. IMHO

0

Share this post


Link to post
Share on other sites

a "mediator release test" is not going to diagnose anything, hon, Sorry.

 

There are NO valid tests for food intolerances.

 

http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/allergytests.html

 

And from the the American Academy of Allergy, Asthma and Immunology (AAAAI) Practice Paper, Current approach to the diagnosis and management of adverse reactions to foods [PDF]:

http://www.sciencebasedmedicine.org/igg-food-intolerance-tests-what-does-the-science-say/

 

From the European Academy of Allergy and Clinical Immunology [4.2.2.9. Nonstandardized and Unproven Procedures; Guideline 12:

 

The (Expert Panel) recommends not using any of the following nonstandardized tests for the routine evaluation of IgE-mediated (food allergy):

  • Basophil histamine release/activation
  • Lymphocyte stimulation
  • Facial thermography
  • Gastric juice analysis
  • Endoscopic allergen provocation
  • Hair analysis
  • Applied kinesiology
  • Provocation neutralization
  • Allergen-specific IgG4
  • Cytotoxicity assays
  • Electrodermal test (Vega)
  • Mediator release assay (LEAP diet)

 

Read the science, hon and stop wasting your money on unproven tests. IMHO

Thank you for this. I did the electrodermal test a few weeks ago, and I remember feeling pretty ripped-off / duped. I regret paying for the damn mediator release test now too. All of it seems to be a scam, with false science, sadly. I felt desperate at the time and just wanted an answer, but it's clear that it wasn't the answer. I guess I just don't know who to see or where to go at this point. I have a physician's appt. in three weeks, and I'm going to see this chiropractor again next week. I guess I should see a neurologist, but I really think the problem lies in my gut. (at the same time, my current neuro symptoms are so very distressful). I feel like I have to come up with all of the answers myself, and I can't afford to keep setting aside months to try different diets hoping they will work, as I am not even healthy enough to work right now. Damnit why is this so hard??

0

Share this post


Link to post
Share on other sites

I actually think the opposite of most of the post. Sometimes in order to diagnose yourself you must do an elimination diet. But to eliminate everything from your body consistently is not always helpful. The way the body works is that it needs a certain percentage of everything. However, some bodies think those "things" are attacking it even though it isn't and fights back. Thats where intolerances and allergies come from. However, by eliminating all of these ingredients without knowing for sure can possibly weaken your immune system and hurt your body more so.  Then when your body gets some of that stuff it may automatically fight it because its not used to it and cannot overcome.

 

Instead of removing all of the foods you eat, why don't you take an allergy test. There is a problem however, if you haven't eaten it for about 6-8 weeks it may come back as negative on the results. But if you haven't been 100% faithful than it may show up. Those testings are usually very expensive but alot of hospitals/clinics offer a sliding fee scale where they base it off of income or other measurements to where you pay a lower percentage of the testing/visit then normal.

 

The other thing is that being one with Celiac disease means your guts lining is messed up. So even though you eat normal or large portions it comes out until it is repaired (this may take a while depending on your body). But it doesn't necessarily mean you have another food intolerance. Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too.

 

MY body wanted gluten however I removed it so I was just eating massive portions of food and it was just coming out every day. I was losing weight excessively no matter how good/bad I ate.  Maybe after a month or so it stabilized. The way your body and mind works is a little tricky. See your body thinks as soon as something is removed that it is "in danger" and goes into survival mode. Your mind thinks "I don't need this but I want it" and then it combats each other. Thats why diets are hard to do because emotions are battling truth and anxiety kicks in to where you just give up. However, after 3-4 weeks your mind and body unite and realize I can do this. I don't need it. See I am okay and then its "normal" or a habit to do whatever you were trying to do before then. However during the beginning stages you feel anxious like "I have to fix this" or "maybe something else is wrong" and we start eliminating or resolving but really we should just be waiting. 

 

I would say to try to slowly add things back into your diet maybe one spoon at first, then a few spoons, then a half portion, full portion and see if it really is something you are allergic. If it is eliminate, if not include it here and there. As the years pass, all these eliminations will be hard to reintroduce and to live by because it is so limiting that it may cause stress and anxiety unnecessarily.

 

Switching doctors may never end because in my experience doctors don't know to much about gluten intolerance/celiac unless they have first hand witnessed it they treat it very lightly and don't understand the side effects it can cause or autoimmune diseases it can trigger. If they did none of us would be using celiac.com because we would have all the answers. But the truth is this is a whole new industry that is now gaining popularity and hitting mainstream so until then we are kind of all just in suspense to see if the latest news will help us individually. 

 

I hope this helps and wasn't rude or repetitive. I am just thinking about past experience, studies and research I done to see if it is beneficial for you. Best of luck! I go to the dr today to see if they can help me. If I am diagnosed with something I will let you know since some of your symptoms I been experiencing lately.

 

 

0

Share this post


Link to post
Share on other sites

I actually think the opposite of most of the post. Sometimes in order to diagnose yourself you must do an elimination diet. But to eliminate everything from your body consistently is not always helpful. The way the body works is that it needs a certain percentage of everything. However, some bodies think those "things" are attacking it even though it isn't and fights back. Thats where intolerances and allergies come from. However, by eliminating all of these ingredients without knowing for sure can possibly weaken your immune system and hurt your body more so.  Then when your body gets some of that stuff it may automatically fight it because its not used to it and cannot overcome.

 

Instead of removing all of the foods you eat, why don't you take an allergy test. There is a problem however, if you haven't eaten it for about 6-8 weeks it may come back as negative on the results. But if you haven't been 100% faithful than it may show up. Those testings are usually very expensive but alot of hospitals/clinics offer a sliding fee scale where they base it off of income or other measurements to where you pay a lower percentage of the testing/visit then normal.

 

The other thing is that being one with Celiac disease means your guts lining is messed up. So even though you eat normal or large portions it comes out until it is repaired (this may take a while depending on your body). But it doesn't necessarily mean you have another food intolerance. Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too.

 

MY body wanted gluten however I removed it so I was just eating massive portions of food and it was just coming out every day. I was losing weight excessively no matter how good/bad I ate.  Maybe after a month or so it stabilized. The way your body and mind works is a little tricky. See your body thinks as soon as something is removed that it is "in danger" and goes into survival mode. Your mind thinks "I don't need this but I want it" and then it combats each other. Thats why diets are hard to do because emotions are battling truth and anxiety kicks in to where you just give up. However, after 3-4 weeks your mind and body unite and realize I can do this. I don't need it. See I am okay and then its "normal" or a habit to do whatever you were trying to do before then. However during the beginning stages you feel anxious like "I have to fix this" or "maybe something else is wrong" and we start eliminating or resolving but really we should just be waiting. 

 

I would say to try to slowly add things back into your diet maybe one spoon at first, then a few spoons, then a half portion, full portion and see if it really is something you are allergic. If it is eliminate, if not include it here and there. As the years pass, all these eliminations will be hard to reintroduce and to live by because it is so limiting that it may cause stress and anxiety unnecessarily.

 

Switching doctors may never end because in my experience doctors don't know to much about gluten intolerance/celiac unless they have first hand witnessed it they treat it very lightly and don't understand the side effects it can cause or autoimmune diseases it can trigger. If they did none of us would be using celiac.com because we would have all the answers. But the truth is this is a whole new industry that is now gaining popularity and hitting mainstream so until then we are kind of all just in suspense to see if the latest news will help us individually. 

 

I hope this helps and wasn't rude or repetitive. I am just thinking about past experience, studies and research I done to see if it is beneficial for you. Best of luck! I go to the dr today to see if they can help me. If I am diagnosed with something I will let you know since some of your symptoms I been experiencing lately.

 

Thx man, I'm going to see what this doc says just b/c he was recommended to me by a couple of people who have celiac disease. But overall, you're right, they don't know jack, and it's pretty damn frustrating to be told again and again that you are a headcase. Makes one feel like an idiot, so in some ways you become worse off than you were going in to the doc. It's great that we have this online community, but I guess I get confused sometimes because everyone seems to say do this, or that, and I can't decide what I should be doing with my diet. Even if I do decide, you have to be on that diet for quite some time for it to really work right? Which sucks for me right now, because I'm not even well enough to work or anything ahhhh. I just want to move on with my life! I think i'm going to continue grain-free for a while... I was grain free for about a month or so before, although with dairy. I improved a little bit, but then stopped doing so, so I gave up. I can definitely tell that I'm less foggy and itchy without the grains, so that's something right? I'm not going to add grains or dairy back in for quite some time. Definitely let me know what ends up happening with your doc! Appreciate the input.

0

Share this post


Link to post
Share on other sites

I actually think the opposite of most of the post. Sometimes in order to diagnose yourself you must do an elimination diet. But to eliminate everything from your body consistently is not always helpful. The way the body works is that it needs a certain percentage of everything. However, some bodies think those "things" are attacking it even though it isn't and fights back. Thats where intolerances and allergies come from. However, by eliminating all of these ingredients without knowing for sure can possibly weaken your immune system and hurt your body more so.  Then when your body gets some of that stuff it may automatically fight it because its not used to it and cannot overcome.

 

Instead of removing all of the foods you eat, why don't you take an allergy test. There is a problem however, if you haven't eaten it for about 6-8 weeks it may come back as negative on the results. But if you haven't been 100% faithful than it may show up. Those testings are usually very expensive but alot of hospitals/clinics offer a sliding fee scale where they base it off of income or other measurements to where you pay a lower percentage of the testing/visit then normal.

 

The other thing is that being one with Celiac disease means your guts lining is messed up. So even though you eat normal or large portions it comes out until it is repaired (this may take a while depending on your body). But it doesn't necessarily mean you have another food intolerance. Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too.

 

MY body wanted gluten however I removed it so I was just eating massive portions of food and it was just coming out every day. I was losing weight excessively no matter how good/bad I ate.  Maybe after a month or so it stabilized. The way your body and mind works is a little tricky. See your body thinks as soon as something is removed that it is "in danger" and goes into survival mode. Your mind thinks "I don't need this but I want it" and then it combats each other. Thats why diets are hard to do because emotions are battling truth and anxiety kicks in to where you just give up. However, after 3-4 weeks your mind and body unite and realize I can do this. I don't need it. See I am okay and then its "normal" or a habit to do whatever you were trying to do before then. However during the beginning stages you feel anxious like "I have to fix this" or "maybe something else is wrong" and we start eliminating or resolving but really we should just be waiting. 

 

I would say to try to slowly add things back into your diet maybe one spoon at first, then a few spoons, then a half portion, full portion and see if it really is something you are allergic. If it is eliminate, if not include it here and there. As the years pass, all these eliminations will be hard to reintroduce and to live by because it is so limiting that it may cause stress and anxiety unnecessarily.

 

Switching doctors may never end because in my experience doctors don't know to much about gluten intolerance/celiac unless they have first hand witnessed it they treat it very lightly and don't understand the side effects it can cause or autoimmune diseases it can trigger. If they did none of us would be using celiac.com because we would have all the answers. But the truth is this is a whole new industry that is now gaining popularity and hitting mainstream so until then we are kind of all just in suspense to see if the latest news will help us individually. 

 

I hope this helps and wasn't rude or repetitive. I am just thinking about past experience, studies and research I done to see if it is beneficial for you. Best of luck! I go to the dr today to see if they can help me. If I am diagnosed with something I will let you know since some of your symptoms I been experiencing lately.

 

 

Honestly...I have read your post repeatedly and I am not really sure what your point is. Sorry.

 

Just one example that is very confusing:

 

Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too.

Edited by IrishHeart
0

Share this post


Link to post
Share on other sites

I actually think the opposite of most of the post. Sometimes in order to diagnose yourself you must do an elimination diet. But to eliminate everything from your body consistently is not always helpful. The way the body works is that it needs a certain percentage of everything. However, some bodies think those "things" are attacking it even though it isn't and fights back. Thats where intolerances and allergies come from. However, by eliminating all of these ingredients without knowing for sure can possibly weaken your immune system and hurt your body more so.  Then when your body gets some of that stuff it may automatically fight it because its not used to it and cannot overcome.

 

Instead of removing all of the foods you eat, why don't you take an allergy test. There is a problem however, if you haven't eaten it for about 6-8 weeks it may come back as negative on the results. But if you haven't been 100% faithful than it may show up. Those testings are usually very expensive but alot of hospitals/clinics offer a sliding fee scale where they base it off of income or other measurements to where you pay a lower percentage of the testing/visit then normal.

 

The other thing is that being one with Celiac disease means your guts lining is messed up. So even though you eat normal or large portions it comes out until it is repaired (this may take a while depending on your body). But it doesn't necessarily mean you have another food intolerance. Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too.

 

MY body wanted gluten however I removed it so I was just eating massive portions of food and it was just coming out every day. I was losing weight excessively no matter how good/bad I ate.  Maybe after a month or so it stabilized. The way your body and mind works is a little tricky. See your body thinks as soon as something is removed that it is "in danger" and goes into survival mode. Your mind thinks "I don't need this but I want it" and then it combats each other. Thats why diets are hard to do because emotions are battling truth and anxiety kicks in to where you just give up. However, after 3-4 weeks your mind and body unite and realize I can do this. I don't need it. See I am okay and then its "normal" or a habit to do whatever you were trying to do before then. However during the beginning stages you feel anxious like "I have to fix this" or "maybe something else is wrong" and we start eliminating or resolving but really we should just be waiting. 

 

I would say to try to slowly add things back into your diet maybe one spoon at first, then a few spoons, then a half portion, full portion and see if it really is something you are allergic. If it is eliminate, if not include it here and there. As the years pass, all these eliminations will be hard to reintroduce and to live by because it is so limiting that it may cause stress and anxiety unnecessarily.

 

Switching doctors may never end because in my experience doctors don't know to much about gluten intolerance/celiac unless they have first hand witnessed it they treat it very lightly and don't understand the side effects it can cause or autoimmune diseases it can trigger. If they did none of us would be using celiac.com because we would have all the answers. But the truth is this is a whole new industry that is now gaining popularity and hitting mainstream so until then we are kind of all just in suspense to see if the latest news will help us individually. 

 

I hope this helps and wasn't rude or repetitive. I am just thinking about past experience, studies and research I done to see if it is beneficial for you. Best of luck! I go to the dr today to see if they can help me. If I am diagnosed with something I will let you know since some of your symptoms I been experiencing lately.

I think this is a bit confusing, too. I am going to address this part that I think I understand what you are claiming:

"Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too."

I only eat watermelon in the summer when it it good. You seem to be saying that when I stop eating watermelon, my body tries to replace watermelon with something else? And it doesn't like the new fruit so it " disposes" of it? How does that make sense? That is the normal way for humans to eat.

0

Share this post


Link to post
Share on other sites

I think this is a bit confusing, too. I am going to address this part that I think I understand what you are claiming:

"Whenever you remove something from your diet, your body panics and it tries to replace it with something else. However that something else is something different then what your body wants so it just disposes of it. This happened to me too."

I only eat watermelon in the summer when it it good. You seem to be saying that when I stop eating watermelon, my body tries to replace watermelon with something else? And it doesn't like the new fruit so it " disposes" of it? How does that make sense? That is the normal way for humans to eat.

Yeah, I didn't quite understand what he was going for there either. I only agree with it in that my body seems to want to dispose of everything!

1

Share this post


Link to post
Share on other sites

my body seems to want to dispose of everything also! LOL ... Yea i'm on the same page as most everyone eles. It makes no sense ... Believe me I have been doing the elimination diet :)  helps with the disposing of everything  :) If ya know what I mean! :) 

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)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,655
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined