Gluten Challenge

[GFinAus]

I have a question about a gluten challenge. I am celiac assumed (positive DNA, symptoms on gluten diet and positive response to gluten-free diet). I didn't have the biopsy as I started on the diet, saw a response and my GE said there was no point if I was feeling better and just to assume I had celiac and remain gluten-free. He did say I could do a gluten challenge but didn't see the point as my symptoms had disappeared.

Now, I am the curious type, and while I know that even if I had a negative biopsy nothing would change, I feel better off gluten so I would continue to eat gluten-free, sometimes my mind just asks what if? So tonight, after being 100 percent gluten-free for 4 months I ate a slice of bread to see if I would have any response. I expected nausea, stomach ache, basically all the things I had when I was eating gluten before. However nothing. It's been a a couple of hours and not even one cramp.

My question is, for those of you who are celiac confirmed via biopsy, do you always have a negative response to gluten? How sensitive are you guys? And is it the same for everyone? I know I won't go back to eating a gluten diet again, however sometimes I wish I had a biopsy for confirmation.

Thanks in advance

[ravenwoodglass]

It can take time for a reaction to occur. I did an elimination diet, doctor guided, as part of my diagnosis process. It takes me 3 days for the digestive issues to show up and the doctor said it can take up to a week to have a reaction. If you are determined to do a challenge then eat gluten at at least a couple meals a day for at least a week before you assume you are not reacting. Also keep in mind that in some, usually younger folks, there can be some time before a reaction happens. Reactions can show up a fatigue, irritability, headaches, balance issues, sore muscles and joints etc before digestive becomes evident. If you are looking for a doctor derived diagnosis through blood work and biopsy you may need a lenghty challenge before the antibodies are in large enough numbers to show up in the blood. Some of us will have negative blood work even on a full gluten diet.

[Celiac Mindwarp]

Took me about five days to a week to respond when I was accidentally given wheat bread rolls, then took me out for a couple of weeks, and 2 more to fully recover.

I have been trying to work out if I have been really good at avoiding gluten, or I am not super sensitive. I don't have a spare month or so to find out.

Good luck whatever you decide.

(Self diagnosed, failed to last gluten challenge)

[gatita]

I'm not biopsy diagnosed but wanted to add my two cents anyway . I'm in kind of a similar boat... "assumed celiac," as you put it, by my doc, since I couldn't have a biopsy at the time (also negative ttg but high anti-gliadin IgA).

I did a mini-gluten challenge two weeks ago because we wanted see how my glutening symptoms might be differing from other possible food issues. I ate gluten at one meal only and was surprised (and a little scared) by an allergy-like reaction less than an hour later.... but THEN my standard gluten intolerance (in the gut) kicked in a day or two later... lasted most of these two weeks! So yes, it can take a while to kick in... how are you feeling now?

[peeptoad]

I am in the same boat you are... no biopsy done beacuse I was already gluten-free, positive response to diet, etc.

I am also curious and did a challenge last year: it took 3-4 days for my symptoms to show up and the first thing that happened was a rash (hives) on the inside of my knees and thighs. It took another 48 hours for the GI stuff to start and I was also extrememly depressed by the end of the week (after about 6 days eating gluten). That was enough for me... still no biopsy and I am off the stuff for good.

[love2travel]

I am a diagnosed celiac. I was off gluten for four months and then had my biopsies done so started my gluten challenge. I actually made a list of the things I wanted to enjoy one last time (I believe there were 87 things on the list - many, in retrospect, are now in my gluten free repetoire). So, I literally pigged out on gluten for three entire months. To be honest I enjoyed it very much. I did not get sick even once. I felt no different whatsoever. BUT after my biopsy results came back I went gluten free strictly and have been doing so now for about 20 months. Sometimes I still wonder, too. But I will not stray because I know the damage it gluten can cause inside, even if I did not get sick. (Who knows? Maybe now I would.) Anyway, I keep thinking of my future. I do not want other diseases or illnesses as a result of consuming gluten.

I DO get sick from eating soft cheeses and milk so I drink lactose-free milk and no longer eat soft cheeses. Sometimes I wonder whether the villi damage was due to that instead... It does bother me from time to time to be honest.

[GFinAus]

I am a diagnosed celiac. I was off gluten for four months and then had my biopsies done so started my gluten challenge. I actually made a list of the things I wanted to enjoy one last time (I believe there were 87 things on the list - many, in retrospect, are now in my gluten free repetoire). So, I literally pigged out on gluten for three entire months. To be honest I enjoyed it very much. I did not get sick even once. I felt no different whatsoever. BUT after my biopsy results came back I went gluten free strictly and have been doing so now for about 20 months. Sometimes I still wonder, too. But I will not stray because I know the damage it gluten can cause inside, even if I did not get sick. (Who knows? Maybe now I would.) Anyway, I keep thinking of my future. I do not want other diseases or illnesses as a result of consuming gluten.

I DO get sick from eating soft cheeses and milk so I drink lactose-free milk and no longer eat soft cheeses. Sometimes I wonder whether the villi damage was due to that instead... It does bother me from time to time to be honest.

Hi love2travel, from my understanding the only thing that causes villi damage is ingesting gluten, then lactose intolerance as well as fructose intolerance (I have this) can occur. It's in-tact villi that are needed for these sugars to be broken down. Once the villi heal you can go back to enjoying those things again, but sometimes the healing may not be 100 percent so you would need to be careful with lactose and other sugars more permanently.

I never had lactose intolerance until this year, when all my symptoms became magnified (when I believed my celiac started). Now one serve of milk sends me running..

Thanks to the other responses, I was of the impression that I needed to be violently ill for eating one slice of bread. It obviously isn't that simple, and as someone said above (I'm not quite sure how to directly reply to more than one post) I would need to eat gluten for an extended period of time. Which when I was, before going gluten-free, I was unwell everyday.

[love2travel]

Hi love2travel, from my understanding the only thing that causes villi damage is ingesting gluten, then lactose intolerance as well as fructose intolerance (I have this) can occur. It's in-tact villi that are needed for these sugars to be broken down. Once the villi heal you can go back to enjoying those things again, but sometimes the healing may not be 100 percent so you would need to be careful with lactose and other sugars more permanently.

I never had lactose intolerance until this year, when all my symptoms became magnified (when I believed my celiac started). Now one serve of milk sends me running..

Thanks to the other responses, I was of the impression that I needed to be violently ill for eating one slice of bread. It obviously isn't that simple, and as someone said above (I'm not quite sure how to directly reply to more than one post) I would need to eat gluten for an extended period of time. Which when I was, before going gluten-free, I was unwell everyday.

That is my understanding, too. However, I have read that lactose can actually cause villi damage but have no clue where I have read that (here??). Either way, I am definitely not willing to eat gluten, especially now! One serving of milk would make me run, too. I finally found a great brand of lactose-free milk - the others have been too sweet. Just wait a sec - let me run to the fridge to see what it is called. OK - I'm back. It's called Natrel.

Celiac is a wild and crazy game. It is so individual and extreme! I believe a few of my family members have it as they exhibit many symptoms but they are nervous to get tested. Actually, they did get bloodwork done but it was all negative. And that was a year ago. I try to explain the high negative rates but they are satisfied they must not have it. They just do not *want* to have it and are in denial.

It is true that it is recommended that a gluten challenge should be three months for adults. Some would become so violently ill that the thought of a challenge would be absolutely mortifying. Now that I know more than I first did it would make me feel that way, too, even if I did not get sick.