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

Still Feeling Sick
0

29 posts in this topic

I was diagnosed in January of this year with Celiac, it's really bad, my lining is completely flat.  I recently had routine blood work to see where are my blood levels now compared to my first diagnose.  Needless to say, it's the same (nothings changed).  I have changed my diet to a Gluten Free diet (or so I thought), however I've been feeling really bloated and a lot of inflammation in my body, even though I eat gluten free ( can someone tell me why?)  Also, I just read that someone with Celiac should NOT eat soy!  could this be the reason? some of the things that I have bought that are gluten-free contains soy.

 

Please help!!! 

0

Share this post


Link to post
Share on other sites


Ads by Google:

If your blood tests were super high, they can be more than they can measure. For instance, one of mine was >100. It could be 102 or 1002. So mine didn't seem like it went down very far after a few months because , who knows how high it was. Also, it can take a long time to get to normal.

Soy bothers some people with Celiac or without. Soy if fine for anyone it doesn't bother. I have no issues with it. Even if you can't tolerate soy, it wouldn't cause Celiac damage. Only gluten can do that.

Check out the newbie thread and see if anything there is new to you.

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

0

Share this post


Link to post
Share on other sites

There are a few other things that can cause damage to villii though this is not my bailiwick.

Here are some old threads of people asking the same question that might help.

http://www.celiac.com/gluten-free/topic/95368-what-else-can-cause-celiac-damage-to-villi/

http://www.celiac.com/gluten-free/topic/65748-other-causes-of-damaged-villi/

0

Share this post


Link to post
Share on other sites

If your blood tests were super high, they can be more than they can measure. For instance, one of mine was >100. It could be 102 or 1002. So mine didn't seem like it went down very far after a few months because , who knows how high it was. Also, it can take a long time to get to normal.

Soy bothers some people with Celiac or without. Soy if fine for anyone it doesn't bother. I have no issues with it. Even if you can't tolerate soy, it wouldn't cause Celiac damage. Only gluten can do that.

Check out the newbie thread and see if anything there is new to you.

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Thanks, I'll check out the link.  My normal weight it 145-148, since all this inflammation I am weighing 153.  It might not be much of a difference for some, but now I can't get into my cloths and I wake up with so much pain, it's so upsetting.  (not the weight so much, but inflammation).  I get pain on jaw, neck, shoulder, wrist and fingers.  

0

Share this post


Link to post
Share on other sites

I would not automatically assume that your villi are still flat because of some "other medical condition" just yet.

 

You are still healing. Any number of things can cause bloating. Do you eat dairy foods for example? how much processed G F foods are you eating?

maybe it's too much for you right now. 

 

Try just one week with no grains or dairy and see what happens?.

 

As Karen pointed out, not every celiac has a problem with soy or dairy or corn for that matter. 

 

Have you had your sed rate, C-reactive protein levels checked? Those show levels of inflammation in the body. These could rule out arthritis and joint issues.

0

Share this post


Link to post
Share on other sites




You may be eating gluten accidentally.  An experienced celiac dietician could help you with that.  It's a good idea to check your numbers as Kareng said.  If those two things are ruled out then you can consider that a small fraction of celiacs react to lower levels of gluten and were found to do better on a special diet as in this study: http://www.biomedcentral.com/1471-230X/13/40

Another possibility is that around 10% of celiacs have their immune response initiated by oats.  I don't think that would show up in an antiglianin antibody blood test though. 

 

I hope you feel better soon.

0

Share this post


Link to post
Share on other sites

I got diagnosed at the end of April and I'm still feeling sick as well. Mostly nauseous and very exhausted. I can not do normal things and I feel like I'm going to collapse. I cut my work day in half and even that is challenging. How long does it take to get better???

0

Share this post


Link to post
Share on other sites

The problem is that everyone is different, so you can not put a time on healing. (I think you know that already.) My main symptom was anemia, but between my blood test and biopsy, I ate a loaf of bread a day (plus other goodies) as a final farewell gesture. Then I got the tummy symptoms. Took me about six weeks to feel an improvement. Took me over six months to a year to really feel good (heal fractures, eliminate anemia, etc.). And I had the benefit already knowing the gluten-free drill since my husband has been gluten-free for 13 years. So, the learning curve for this new diet was very short for me!

I would stress whole foods. At the beginning, I was baking gluten-free goodies and buying processed gluten-free stuff for both me and my husband, except he was healed and could handle that junk and I could not. At the end of a year, I was feeling pretty good (enough to get back on my bike, run and swim).

So, be patient. Take care of yourself. I gave up most of my volunteer work, etc. for the year. Hubby has taken all the work load off me. I am only now getting into it again (we are self-employed).

Hang in there! You are not alone!

Oh, be sure to read the newbie section located under coping!

0

Share this post


Link to post
Share on other sites

I know no matter how many times people tell me to stick to whole foods right now while I heal, I have a hard time doing it every day.  After years of misdiagnosis, most of us are so sick it takes a long time to heal.  I know if I have too many different foods right now, I get sick.  If I have too much sugar, I get sick.  Can't have too many raw veggies, if any at all some days.

 

It seems like I am blowing smoke right now since I can't even follow my own advise. But it is so hard after all we have to give up so many foods and  to not even be able to have the gluten-free version because it is processed and our guts just can't handle that.  I was also wondering if you are eating a different variety of foods that are tested down to 20ppm, are you actually getting a significant amount from eating too many in one day? 

0

Share this post


Link to post
Share on other sites

I know no matter how many times people tell me to stick to whole foods right now while I heal, I have a hard time doing it every day.  After years of misdiagnosis, most of us are so sick it takes a long time to heal.  I know if I have too many different foods right now, I get sick.  If I have too much sugar, I get sick.  Can't have too many raw veggies, if any at all some days.

try keeping a food journal and make notes on how certain foods are being digested/agreeing with your gut and which are giving you trouble.  it's easier to find the 'culprit' and then just skip it for awhile.  i couldn't eat (ie) peppers for a long while but have been able to add them back in.  i am one of the ones who have trouble with soy (nothing to do with being celiac, but the celiac 'disguised' my intolerance) so, i try to avoid it.  (now, my gelato has soy in it, so i trade off now and again lolz) if i make a whole meal, and i have indigestion, i'll try each item separately and figure out what is bugging me.  as you heal, you will more than likely get to add foods back in.  give your gut a minute to get healing :)  if you have significant villi damage, your body isn't producing the enzyme that digests dairy products.  it is produced on the tips of your villi, so, if they're damaged, you won't be able to eat/drink dairy for awhile.  i think i skipped dairy for 6 months.  i have it back, now, no problem.

 

also, using probiotics and digestive enzymes has helped a lot for me.  the enzymes are especially helpful (STILL) to help digest raw stuff like salads and veggies.  i played around with different combinations and here's what works for me:  culturelle at night, enzymes before meals, and i have a probiotic/enzyme combination i take with lunch or big snack in the afternoon.  

0

Share this post


Link to post
Share on other sites

You may be eating gluten accidentally.  An experienced celiac dietician could help you with that.  It's a good idea to check your numbers as Kareng said.  If those two things are ruled out then you can consider that a small fraction of celiacs react to lower levels of gluten and were found to do better on a special diet as in this study: http://www.biomedcentral.com/1471-230X/13/40

Another possibility is that around 10% of celiacs have their immune response initiated by oats.  I don't think that would show up in an antiglianin antibody blood test though. 

 

I hope you feel better soon.

This is all new to me and no matter how much I try to not eating anything thats not gluten-free, I still feel pain and discomfort.  I also read that a Celiac's, should not eat soy! I just recently stopped eating that.  I do not eat processed gluten-free food, I have everything grilled (meats and veggies), I eat all plant based food, so I'm hoping that my problem was with soy, I have been soy free for 1 week now.  I will be meeting with a certified Celiac Nutritionist in 2 weeks, I think this will help me a lot. 

0

Share this post


Link to post
Share on other sites

I got diagnosed at the end of April and I'm still feeling sick as well. Mostly nauseous and very exhausted. I can not do normal things and I feel like I'm going to collapse. I cut my work day in half and even that is challenging. How long does it take to get better???

are you anemic? I was very Anemic and had to have 3 sessions of IV infusions.  It help me to get back to my normal life, however 1 month later I was diagnosed with Celiac.   

0

Share this post


Link to post
Share on other sites

try keeping a food journal and make notes on how certain foods are being digested/agreeing with your gut and which are giving you trouble.  it's easier to find the 'culprit' and then just skip it for awhile.  i couldn't eat (ie) peppers for a long while but have been able to add them back in.  i am one of the ones who have trouble with soy (nothing to do with being celiac, but the celiac 'disguised' my intolerance) so, i try to avoid it.  (now, my gelato has soy in it, so i trade off now and again lolz) if i make a whole meal, and i have indigestion, i'll try each item separately and figure out what is bugging me.  as you heal, you will more than likely get to add foods back in.  give your gut a minute to get healing :)  if you have significant villi damage, your body isn't producing the enzyme that digests dairy products.  it is produced on the tips of your villi, so, if they're damaged, you won't be able to eat/drink dairy for awhile.  i think i skipped dairy for 6 months.  i have it back, now, no problem.

 

also, using probiotics and digestive enzymes has helped a lot for me.  the enzymes are especially helpful (STILL) to help digest raw stuff like salads and veggies.  i played around with different combinations and here's what works for me:  culturelle at night, enzymes before meals, and i have a probiotic/enzyme combination i take with lunch or big snack in the afternoon.  

I just recently found out that I can't have soy!!!! everything I ate had soy  :angry:, I'll be going to see a nutritionist soon, god willing I'll get some good advice and I would be able to live a happy gluten-free life  :D

0

Share this post


Link to post
Share on other sites

I know no matter how many times people tell me to stick to whole foods right now while I heal, I have a hard time doing it every day.  After years of misdiagnosis, most of us are so sick it takes a long time to heal.  I know if I have too many different foods right now, I get sick.  If I have too much sugar, I get sick.  Can't have too many raw veggies, if any at all some days.

 

It seems like I am blowing smoke right now since I can't even follow my own advise. But it is so hard after all we have to give up so many foods and  to not even be able to have the gluten-free version because it is processed and our guts just can't handle that.  I was also wondering if you are eating a different variety of foods that are tested down to 20ppm, are you actually getting a significant amount from eating too many in one day? 

I saw on a website that Celiac's should not have SOY! I've been still sick since finding out that I was Celiac and living gluten-free, nothings changed, however since finding out about soy and removing from my diet i have been feeling a little better.  I still have joint pain and inflammation, however my stomach feels better.  I used to drink, Green Tea with lemon and honey and when I scanned the bar code (an app for my iPhone called shopwell) it came up that it has soy  :o, so now I drink just plain ole Green Tea.  I am also upset because I am a huge fan of Nutella and rice cakes....Nutella has SOY!  :rolleyes: I'll be seeing a Celiac Certified Nutritionist in 2 weeks, I'll be more than happy to share with everyone what she say.

0

Share this post


Link to post
Share on other sites

I saw on a website that Celiac's should not have SOY! I've been still sick since finding out that I was Celiac and living gluten-free, nothings changed, however since finding out about soy and removing from my diet i have been feeling a little better.  I still have joint pain and inflammation, however my stomach feels better.  I used to drink, Green Tea with lemon and honey and when I scanned the bar code (an app for my iPhone called shopwell) it came up that it has soy  :o, so now I drink just plain ole Green Tea.  I am also upset because I am a huge fan of Nutella and rice cakes....Nutella has SOY!  :rolleyes: I'll be seeing a Celiac Certified Nutritionist in 2 weeks, I'll be more than happy to share with everyone what she say.

 

 

There are no reputable Celiac centers or associations that I  am aware of that say that   Celiacs cannot have soy.  If you have a legitimate source, please post it.  

 

Like I said before, there are people, Celiac or not Celiac, who have issues with soy.  

0

Share this post


Link to post
Share on other sites

There are no reputable Celiac centers or associations that I  am aware of that say that   Celiacs cannot have soy.  If you have a legitimate source, please post it.  

 

Like I said before, there are people, Celiac or not Celiac, who have issues with soy.  

I got this information online, however, I will be meeting with a Celiac Nutritionist in 2 weeks, I should get better information then and I'll share it with everyone.  I have noticed that since removing soy from my diet, I haven't had any stomach issues (but still have joint and inflammation).  Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy.

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

0

Share this post


Link to post
Share on other sites

I got this information online, however, I will be meeting with a Celiac Nutritionist in 2 weeks, I should get better information then and I'll share it with everyone. I have noticed that since removing soy from my diet, I haven't had any stomach issues (but still have joint and inflammation). Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy.

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

Many Celiacs don't use dairy because the damaged villi are the part that makes the enzyme to digest lactose.

Please provide reliable, scientific sources for these theories of yours. Manufacturers aren't having to take gluten-free off soy products that are gluten-free. We just want to help you and give you accurate info. You might want to read the University of Chicago Celiac Center website.

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

Just want to add - your liver doesn't care about gluten. It doesn't get gluten. The celiac reaction is in the small intestine. Please read some reliable info. Maybe look at a good explanation of how the digestive system works. I think someone is giving you some odd info.

Edited by kareng
0

Share this post


Link to post
Share on other sites

I got this information online, however, I will be meeting with a Celiac Nutritionist in 2 weeks, I should get better information then and I'll share it with everyone.  I have noticed that since removing soy from my diet, I haven't had any stomach issues (but still have joint and inflammation).  Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy.

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

lolz !  who perpetuates this crap ?  sorry, maria, you are being duped :(  soy and gluten are completely different things and cows are not giving soy milk from eating soybeans.....

 

as karen said, if you want to make statements like this, you must provide legitimate scientific documentation.  

 

i have issues (separate from my celiac) with soy and guess what they are:  INFLAMMATION especially joint inflammation. maybe you have a separate issue with soy, but it has nothing to do with gluten.  (soy lecithin will still cause a person with soy issues to have inflammation)  also, celiac might *affect* your liver (because celiac is systemic), but it's not where it manifests.  it's possible to have many intolerances.  please consult with legitimate sources of information.  good luck! :)  

0

Share this post


Link to post
Share on other sites

Many Celiacs don't use dairy because the damaged villi are the part that makes the enzyme to digest lactose.

Please provide reliable, scientific sources for these theories of yours. Manufacturers aren't having to take gluten-free off soy products that are gluten-free. We just want to help you and give you accurate info. You might want to read the University of Chicago Celiac Center website.

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

Just want to add - your liver doesn't care about gluten. It doesn't get gluten. The celiac reaction is in the small intestine. Please read some reliable info. Maybe look at a good explanation of how the digestive system works. I think someone is giving you some odd info.

This is all new to me, I will get the right information from my Nutritionist when I see her in 2 weeks.  I came to this site to get information, the information that I just posted was something that I read from someone on this site as well.  Everyone has their own opinion and everyone has very different symptoms.  Some have problems with Lactose and some with Soy, but we are all fighting the same illness "Celiac".  I will be more than happy to share my findings after meeting with my Celiac Nutritionist, it took some time to find the right person b/c not all Nutritionist or Dietitians understand Celiac. 

0

Share this post


Link to post
Share on other sites

This is all new to me, I will get the right information from my Nutritionist when I see her in 2 weeks.  I came to this site to get information, the information that I just posted was something that I read from someone on this site as well.  Everyone has their own opinion and everyone has very different symptoms.  Some have problems with Lactose and some with Soy, but we are all fighting the same illness "Celiac".  I will be more than happy to share my findings after meeting with my Celiac Nutritionist, it took some time to find the right person b/c not all Nutritionist or Dietitians understand Celiac. 

 

 

What I am trying to say is - don't go by "opinions" go by some scientific/medical data.  Hopefully, you have found someone who can help you, not just try to sell you supplements.

0

Share this post


Link to post
Share on other sites

Maria,

 

You mentioned that 

" Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy."

 

Soy may very well be causing you some symptoms or it is any number of other ingredients in a packaged product. The only way to tell is to just eat

soy--all by itself. Eat a big hunk of tofu or some soybeans. PLAIN...and see what happens.

 

As for this claim:

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

 

 

well, I did a quick search on here and that statement came from someone who was quoting her "PhD' doctor --i.e. her psychologist perhaps--

and the thread is a giant train wreck of speculation and misinformation from 2007--which is why it was locked down. Hardly any of those people are even contributing members anymore.

 

That poster gave other nuggets of misinformation like this one:

 

 my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

 

 

There is no "0305 celiac gene" and there aren't any specific food lists for 'celiac genes" anyway. She claims the doctor said certain celiacs will react to soy like it is gluten because of the "gene they carry". Hogwash.

 

I can assure you, this is absolutely unverified nonsense and wild speculation. ( some of us long time members  would like to see threads like this one you are quoting from deleted permanently)

 

 

http://www.celiac.com/gluten-free/topic/28935-please-read-no-celiacs-can-have-soy/page-7

 

If you want valid information read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This is a public forum and we have all seen some pretty wild stuff posted here. We try to make sure new people get valid information. You will have to choose wisely when reading things, okay? ;)

 

Best wishes to you. 

0

Share this post


Link to post
Share on other sites

Soy can be contaminated with gluten.  http://www.glutenfreedietitian.com/newsletter/contamination-of-naturally-guten-free-grains/

That doesn't mean that all soy is contaminated or that celiacs shouldn't eat soy.

There is still a lot of unknowns with celiac disease and a lot of speculation online and in the offices of various health professionals.  You need to look carefully at the source of your information.  You need to see if there is any scientific evidence behind what someone is proposing.  It is easy to make mistakes when you look at what might have made you sick in a day's food consumption.

All the speculation makes navigating this condition more difficult. 

0

Share this post


Link to post
Share on other sites

That study also states;

 

"sampling was not large enough to make any assessment on the overall percentage of contaminated product.

Sampling also was not large enough to make any inferences on the specific grains, flours, and seeds more or less likely to be contaminated."

 

 

 

Note: bold lettering is theirs, not mine

Edited by IrishHeart
0

Share this post


Link to post
Share on other sites

Maria,

 

You mentioned that 

" Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy."

 

Soy may very well be causing you some symptoms or it is any number of other ingredients in a packaged product. The only way to tell is to just eat

soy--all by itself. Eat a big hunk of tofu or some soybeans. PLAIN...and see what happens.

 

As for this claim:

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

 

 

well, I did a quick search on here and that statement came from someone who was quoting her "PhD' doctor --i.e. her psychologist perhaps--

and the thread is a giant train wreck of speculation and misinformation from 2007--which is why it was locked down. Hardly any of those people are even contributing members anymore.

 

That poster gave other nuggets of misinformation like this one:

 

 my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

 

 

There is no "0305 celiac gene" and there aren't any specific food lists for 'celiac genes" anyway. She claims the doctor said certain celiacs will react to soy like it is gluten because of the "gene they carry". Hogwash.

 

I can assure you, this is absolutely unverified nonsense and wild speculation. ( some of us long time members  would like to see threads like this one you are quoting from deleted permanently)

 

 

http://www.celiac.com/gluten-free/topic/28935-please-read-no-celiacs-can-have-soy/page-7

 

If you want valid information read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This is a public forum and we have all seen some pretty wild stuff posted here. We try to make sure new people get valid information. You will have to choose wisely when reading things, okay? ;)

 

Best wishes to you. 

I didn't think about it, but Yes....I will try eating a soy bean on its own to see my reaction.  Thanks for the info, I've never used a Forum or Blog before, so reading everyone's post can become very overwhelming.  Some people seem as though they know what they're talking about, but then you get a response from someone else saying"No..thats not right". 

0

Share this post


Link to post
Share on other sites

Soy can be contaminated with gluten.  http://www.glutenfreedietitian.com/newsletter/contamination-of-naturally-guten-free-grains/

That doesn't mean that all soy is contaminated or that celiacs shouldn't eat soy.

There is still a lot of unknowns with celiac disease and a lot of speculation online and in the offices of various health professionals.  You need to look carefully at the source of your information.  You need to see if there is any scientific evidence behind what someone is proposing.  It is easy to make mistakes when you look at what might have made you sick in a day's food consumption.

All the speculation makes navigating this condition more difficult. 

Thanks, Yes...I see now that I really need to check my resources.  I do have to say though, that I removed "some" soy from my daily intake and have become "regular" I do not feel the discomfort of constipation.  So I may be one of those Celiac's that can not have soy ;/ It's become a process of elimination to find whats best for me. 

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
      103,885
    • Total Posts
      919,480
  • Topics

  • Posts

    • Eeek confused! Positive biopsy, negative blood test???
      Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy
    • Potato Crusted Quiche Breakfast Casserole (Gluten-Free)
      Here is the Potato Crusted Quiche Breakfast Casserole that my Significant Other came up with. View the full article
    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
    • newbie diagnosed mom - testing 8 yr old now
      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,929
    • Most Online
      1,763

    Newest Member
    Robyn08
    Joined