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

[NYCCeliacMom]

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.

[Sulevismom]

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 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.

[Generic]

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.

[darlindeb25]

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.

[ang1e0251]

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.

[Ed-G]

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

[LDJofDenver]

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.

[Takala]

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.

[Mskedi]

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).

[shendler]

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.

[jennalin]

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

[NYCCeliacMom]

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!

[OptimisticMom42]

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

[jennalin]

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!

[NYCCeliacMom]

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...

[Jestgar]

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....