Still Feeling Sick

[Maria B.]

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!!! 

[kareng]

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.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[NatureChick]

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.

https://www.celiac.com/forums/topic/95368-what-else-can-cause-celiac-damage-to-villi/

https://www.celiac.com/forums/topic/65748-other-causes-of-damaged-villi/

[Maria B.]

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.

https://www.celiac.com/forums/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.  

[IrishHeart]

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.

[dilettantesteph]

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: Open Original Shared Link

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.

[littleliffy]

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???

[cyclinglady]

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!

[beth01]

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? 

[notme]

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.  

[Maria B.]

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: Open Original Shared Link

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. 

[Maria B.]

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.   

[Maria B.]

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  , 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 

[Maria B.]

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  , 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!   I'll be seeing a Celiac Certified Nutritionist in 2 weeks, I'll be more than happy to share with everyone what she say.

[kareng]

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  , 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!   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.  

[Maria B.]

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.

[kareng]

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.

Open Original Shared Link

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.

[notme]

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!  

[Maria B.]

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.

Open Original Shared Link

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. 

[kareng]

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.

[IrishHeart]

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)

 

 

https://www.celiac.com/forums/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. 

[dilettantesteph]

Soy can be contaminated with gluten.  Open Original Shared Link

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. 

[IrishHeart]

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

[Maria B.]

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)

 

 

https://www.celiac.com/forums/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". 

[Maria B.]

Soy can be contaminated with gluten.  Open Original Shared Link

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.