Severity Of Attacks Worse After gluten-free?

[henny]

I'm 5 weeks gluten free with no formal diagnosis other than my entire family having celiac including my mom.

I had an almost immediate reaction to the diet - no more headaches, vastly improved GI and mental clarity.

I have had two 'attacks' in the 5 weeks gluten free where my GI pain, gas, D, nausea, etc. all came back suddenly for a day or so. I am sorry to report that the actual 'attacks' are even more intense than they were when I used to have them almost every day before going gluten-free.

I also have not been able to pinpoint a 'smoking gun' food that caused these two 'attacks' - if it was gluten it was trace amounts, and I don't appear to be reacting to soy or any of the other classics.

On the other hand, I did eat a glutinous cracker and some Ovaltine malt as an experiment and my reaction was very mild in comparison to these two attacks. I had one today and I literally lost consciousness from the pain, which is very low in the abdomen so not galbladder.

So, what do you think of all this? I am not sure if there is something else going on or is this something that happens with gluten intolerance? Severity increasing as frequency decreases.....unknown sources causing huge reactions while knowns causing mild ones.....

The good news is that most of the time I feel like a million bucks due to the gluten-free diet! It's amazing what a difference it made

I just need to figure out what is causing these attacks....is there another cause I should investigate?

[mhb]

I have heard a number of times that reactions can be stronger once going off gluten. In my case I even have different symptoms, getting slightly nauseous which was never a symptom before. I think I might also have experienced what you describe as having stronger reactions to small amounts of exposure with larger reactions to less exposure, or vice versa, depending on the alignment of the planets and stars. I'll be interested to hear if others have experienced this also. It's quite an odyssey for many of us!

[henny]

Indeed! This is quite a roller coaster ride! Luckily for me there have been far more ups than downs, but the downs are quite spectacular!

[Prudence]

I was diagnosed this past August with Gluten Intolerance (the blood test for Celiac being inconclusive). Anyway, since I have been on the diet change, I have been doing much better. Its been a major adjustment for me to avoid eating gluten, and sometimes I mess up. When I have eaten Gluten, I usually pay for it for the next 24 hours with the usual symptoms. What worries me though, is that I have been having these "attacks" since my diagnosis, which are much more severe that the usual symptoms of Celiac. It seems to come and go, and doesn't happen everytime I eat gluten. When I have these episodes, the bathroom visits are much more severe, like water, and I am nauses until I vomit violently, lightheaded to the point of almost passing out... its really odd. The next day I'm fine. I have had 3 seperate episodes over the past 6 weeks. I thought it might just be a bug, but now I am starting to think otherwise... Does this sound like what you are experiencing as well?

[henny]

YES! yes yes yes!

That sounds exactly what I have been experiencing. 3 times in 5 weeks this has happened.

sorry to hear you're having it also

[happygirl]

From

Fasano A, Troncone R, Branski D (eds): Frontiers in Celiac Disease. Pediatr Adolesc Med. Basel, Karger, 2008, vol 12, pp 172

[Prudence]

Thank you for the post Happygirl. Its sort of a relief to know that these espisodes are related to the Celiac, and not some other condition I'd have to worry about. Its also depressing. I guess I have been trying to figure out a way to cheat now and then, but its just not possible. Its also a huge relief to know that I'm not the only one that this has been happening to. Thank you for the original post Henny.

[dilettantesteph]

My gluten reactions were also much worse after going gluten free after the first month or so. Also there were more symptoms all at once. So bad that I felt like killing myself several times. I never passed out though. Sorry you experienced that. Of course you are concerned. After about a year they are much better. I don't know if it is just because I am better at avoiding gluten now. My son, diagnosed at the same time also seemed to follow the same pattern. You have something to look forward to.

[mhb]

Do most people have the same symptomatic reaction to gluten each time they are glutened? It seems like sometimes I get a headache, sometimes loose stools, sometimes very bloated, but not usually all three.

[Prudence]

Do most people have the same symptomatic reaction to gluten each time they are glutened? It seems like sometimes I get a headache, sometimes loose stools, sometimes very bloated, but not usually all three.

I know what you mean. Most of the time that I accidently eat Gluten, I will have at least D. But not always the violent reaction I mentioned before, which is why it was bugging me. I'm just glad to know that other people have had similar reactions, albeit not every time they eat gluten. I hope this helps.