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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do You Become More Or Less Sensitive To Gluten Over Time?
0

16 posts in this topic

My daughter and I have celiac, diagnosed 6-7 months ago. I recently visited family for the first time since we went gluten-free. It seems to me that I am more sensitive to gluten now than I was before diagnosis. My daughter, too, appears to react to tiny amounts of gluten (she is working at a camp and they were giving her gluten-free lunches but didn't understand about cross contact with wheat foods, things are better now that we have talked to them). Family members are trying hard but can't really believe that using a cutting board previously used for wheat foods could be a problem. They ask questions with the unspoken comment, how can you be so fussy? I can deal with this since it is a life-long issue but I wonder: will we become less reactive over time when we are fully healed? Despite all my efforts I did get some gluten while away.

0

Share this post


Link to post
Share on other sites


Ads by Google:
My daughter and I have celiac, diagnosed 6-7 months ago. I recently visited family for the first time since we went gluten-free. It seems to me that I am more sensitive to gluten now than I was before diagnosis. My daughter, too, appears to react to tiny amounts of gluten (she is working at a camp and they were giving her gluten-free lunches but didn't understand about cross contact with wheat foods, things are better now that we have talked to them). Family members are trying hard but can't really believe that using a cutting board previously used for wheat foods could be a problem. They ask questions with the unspoken comment, how can you be so fussy? I can deal with this since it is a life-long issue but I wonder: will we become less reactive over time when we are fully healed? Despite all my efforts I did get some gluten while away.

I think this is a good question, since I've met other people with celiac disease who have had different experiences in this regard. But after thinking about it, experiencing it, and reading what experts seem to have to say I have come to this conclusion:

The glutening symptoms get worse the longer you go without gluten. This is presumably because we lose the antibodies that our bodies had been using to deal with the experience in the past. Some people report that they can tolerate a little more, like 100 ppm rather than 2ppm after a long rest away from gluten.

I have two theories for this: a) their digestive tract has healed and they have become asymptomatic, although they still suffer damage EVERY time they get gluttened, or B) the disease sometimes goes into remission, as in, it can go away completely for a period of time, but it always comes back, and you can never predict when.

I've been gluten free for about 3 months now, and I definitely have worse symptoms now than ever before. It's very frustrating to say the least, but it keeps me on my toes.

I hope that helps, and I look forward to reading what others have to say.

0

Share this post


Link to post
Share on other sites

You definitely get more sensitive over time. Just because you don't feel any symptoms, it doesn't mean you aren't having silent damage.

0

Share this post


Link to post
Share on other sites

Also, sometimes the reactions change, absolutely does not mean better. I have been gluten free for 9 years, and I react to the tiniest bit of gluten, and the reaction lasts at least 3 weeks. Last year, I had a reaction that lasted 3 months, and I lost 24#.

I used to have diarrhea all the time, before gluten free. Once I was gluten free, if I got gluten by accident, I would get diarrhea. Over the years, my reaction has become more neurological...severe headache, anxiety, nausea, dizziness, blood pressure shoots up, then the brain fog hits for several hours. Then I will have an overall "not feeling well" for days, even weeks.

0

Share this post


Link to post
Share on other sites

I can only speak for myself. My reactions are worse as time goes on. I react to smaller amounts of gluten that I might not have noticed in the first couple of months gluten-free.

0

Share this post


Link to post
Share on other sites




I tend to be one of those "silent" celiacs. Currently the only noticeable symptoms I get are diahrrea and gas, which can show up as quickly as twenty minutes after eating gluten. Also over time I will lose weight -- quite a bit of it.

Ed in MD

0

Share this post


Link to post
Share on other sites

Me, too (more sensitive now than before diagnosis). God help me if I get accidentally glutened at a restaurant or at someone's house. It is swift and fierce (and painful), with added bloating, swollen, lingering things that take days to normalize.

I saw the GI doc about 7 months after diagnosed by blood work and when she said she wanted to do an endoscopy I almost started crying, stating that there's no way I can go back on gluten for the endo. She said I didn't have to. Must have know that there'd be plenty of damage (almost no villi, very sporadic) since I'm in my 50s and probably had it most my life.

It's not been a year yet (gluten free, that is) and the longer I go the more it nails me when encountered.

0

Share this post


Link to post
Share on other sites

I've been off of it for over 6 years and am finally getting more sensitive, and I'm not the type that reacts as badly as some of you - well, I react, but it's a lot differently.

I feel sort of bad reading about some of these reactions sometimes.

Then I think, well, maybe nobody would like my reactions, either. :rolleyes:

0

Share this post


Link to post
Share on other sites

I've been gluten-free for about a month now, and I had my first gluten accident last Friday. It was awful for about 4 hours, and then it was moderate for a day, and now I'm back to what I only recently realized is normal. Since that is the worst I've ever felt, I definitely buy into the theory that the longer you go without gluten, the worse the reaction is. I shudder to think what it will be like if I make a similar mistake a couple years down the road.

On the plus side, it gave me definite proof that I have gluten problems (Celiac runs in my family, but I don't have a doctor's diagnosis -- just a good chunk of the symptoms).

0

Share this post


Link to post
Share on other sites

Besides being much more sensitive my symptoms are far different. Like I ate something that had gluten when I was at the movies and it felt like the whole room was spinning and I never had that before. My heart beat increases right away and I start to feel like I am going to pass out. I still have all my other symptoms from before, now just more.

0

Share this post


Link to post
Share on other sites

I actually just turned on my computer to search for this very topic. My reactions are definitely getting worse and honestly, lately I have just felt like throwing a big ol' temper tantrum about the whole thing!! I had my worst reaction about a week and a half ago and yesterday I was feeling a little bit better and went to a friends house for dinner. The minute we finished it hit and I was in the bathroom. It was horrible - never had such an instant reaction or a reaction while I was out - not pleasant. Then during the night I got up and had a bowl of cereal and again the minute I was done the big "D" hit again. It then dawned on me that I had ice cream with my dessert and then the milk on my cereal.

I have seen information about lactose intolerance and celiac disease - but why would it happen now after 7 months? Could it be related to the reaction I had last week? Is this all a part of becoming more sensitive?

Anyone have any insight? I have four books on celiac disease and not one of them deals with actual "reactions" or it just says you will have GI issues. They all only discuss the big symptoms that get you diagnosed or what celiac disease can turn into. In the beginning that is all very useful but not so much here in the day to day....

Any info. is appreciated!

Jenna - Buffalo, NY

0

Share this post


Link to post
Share on other sites
I actually just turned on my computer to search for this very topic. My reactions are definitely getting worse and honestly, lately I have just felt like throwing a big ol' temper tantrum about the whole thing!! I had my worst reaction about a week and a half ago and yesterday I was feeling a little bit better and went to a friends house for dinner. The minute we finished it hit and I was in the bathroom. It was horrible - never had such an instant reaction or a reaction while I was out - not pleasant. Then during the night I got up and had a bowl of cereal and again the minute I was done the big "D" hit again. It then dawned on me that I had ice cream with my dessert and then the milk on my cereal.

I have seen information about lactose intolerance and celiac disease - but why would it happen now after 7 months? Could it be related to the reaction I had last week? Is this all a part of becoming more sensitive?

Anyone have any insight? I have four books on celiac disease and not one of them deals with actual "reactions" or it just says you will have GI issues. They all only discuss the big symptoms that get you diagnosed or what celiac disease can turn into. In the beginning that is all very useful but not so much here in the day to day....

Any info. is appreciated!

Jenna - Buffalo, NY

The tips of the villi are where the enzyme is produced that processes dairy. Damaged villi cannot digest the sugars in milk, hence many celiacs are lactose intolerant. It can be a sign that you have celiac. If I had known this when I first became lactose intolerant, my celiac would have been caught years earlier. Once you are totally gluten free, your villi can recover and you may be able to digest dairy with no issues. I went though a good period a couple of months ago when I had no issues with dairy. However, I have had multiple small glutenings in the last two months and am now taking lactaid whenever I have a dairy product. No issues with yogurt for me, something about the fermenting altering the sugars. I have found that eating as though I had had an instestinal problem for a few days after a glutening is helpful..BRAT diet, bananas, rice, apples, tea. I mean to do that, anyway!

0

Share this post


Link to post
Share on other sites
I have seen information about lactose intolerance and celiac disease - but why would it happen now after 7 months? Could it be related to the reaction I had last week? Is this all a part of becoming more sensitive?

Anyone have any insight?

Jenna - Buffalo, NY

Hello Jennalin, You may want to read a bit about leaky gut. Some celiacs are able to digest lactose once the villi heal but for others ......... I developed allergies to dairy protein, soy, carrots, celery, and sweet potatoes over a very short period of time. These were foods I had been eating frequently when I became ill. My "allergic reaction" to dairy and soy are nearly the same as being lactose intolerant, cramps and D, but are not helped by taking lactaid before eating. These allergies were diagnosed by skin test and I have tested myself on the dairy once since then with a small amount of butter. My reaction wasn't as horrible as it used to be but it did take me several days to get back to normal.

Hope this helps, RA

0

Share this post


Link to post
Share on other sites

Thank you both for the information. It does seem like this glutening I got a week or so ago may be what triggered this. Oh, and yes, I do have Celiacs with endoscopy and blood work backing up the diagnosis. I am keeping my fingers crossed that hopefully once I get back to "normal" and my villi spring back into action again I will be able to handle the lactose again too.

I know it is great that we don't have to take any medications and that in terms of illnesses we are pretty lucky to just have to change our diets in order to stay well - but sometimes I feel like people think that it is just a simple diet change. It really isn't as easy as one would think. Although, it could also be that I am moody right now! :)

0

Share this post


Link to post
Share on other sites
Thank you both for the information. It does seem like this glutening I got a week or so ago may be what triggered this. Oh, and yes, I do have Celiacs with endoscopy and blood work backing up the diagnosis. I am keeping my fingers crossed that hopefully once I get back to "normal" and my villi spring back into action again I will be able to handle the lactose again too.

I know it is great that we don't have to take any medications and that in terms of illnesses we are pretty lucky to just have to change our diets in order to stay well - but sometimes I feel like people think that it is just a simple diet change. It really isn't as easy as one would think. Although, it could also be that I am moody right now! :)

I know what you mean...yesterday I was talking about how being celiac is affecting my daughter's decisions about where to apply to college and the well-meaning person I was talking to said 'oh, I was just reading how if you have celiac, all you have to do is just eat rice, fruits and vegetables and you will be fine'. Easy as pie, right? We have both gotten sick a lot this summer and usually is very small things (like a vitamin, or a container, or some random contact with wheat) that did it...

0

Share this post


Link to post
Share on other sites
d 'oh, I was just reading how if you have celiac, all you have to do is just eat rice, fruits and vegetables and you will be fine'. Easy as pie, right?

yep...easy as pie.... :mellow:

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
      103,355
    • Total Posts
      917,445
  • Topics

  • Posts

    • celiac disease is psychosomatic
      I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.
    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
    • celiac disease is psychosomatic
      Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?
    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.   I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by celiac disease, another medical condition or it just turns out to be a stand alone problem, one book that I would recommend that really helped me understand anxiety is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
    • celiac disease is psychosomatic
      Unfortunately I feel this may be common.  For 6 years I was told I was fine.  Lungs fine, chest fine, just anxiety.  It was not until I pressed the anemia issue that I got a blood test.  Now I am a bit of a squeaky wheel to my doctor.  She referred me to Mayo Clinic in Rochester MN which has a celiac center.  I will meet with Dr. Murray (who is a leader in celiac research) next Friday.  If nothing else, you could always come to Mayo Clinic.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,486
    • Most Online
      1,763

    Newest Member
    Trace66
    Joined