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Worse Attack After Starting Diet And Being Exposed?
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First of all i do not know for sure im gluten intolerant or have celiac disease. I had a pain in my upper right rib area that felt like a tennis ball sitting in there. It was more like a constant pressure and wasn't a sever pain. I went to the Dr. and he suggested a gluten free diet and did some blood work that didn't show any other real issues.

I never really had any diarreah or really any other symptoms that i knew of until this right rib cage pressure/pain came along.

So i decideed to go gluten free and i did this for about two weeks. Whether it was mind games or not i found that even after one day i didn't really feel that pressure in my right rib so that makes me think he was on to something.

(let me add i am lactose intolerant if that ever factors into any of this)

But what i find weird is this. I went all this time and never really had any symptoms until this right rib cage pressure and started the gluten free diet. One day coming home from work i was so hungry i stopped at McDonalds and had two hamburgers and fries.Well i started feeling bad and but the symtpoms im getting NOW are not what i had ever had before.

I guess my question is this. Had i not gone gluten i am thinking the two hamburgers wouldnt have had as big a deal on my body. Dopes going gluten free even for a short time and THEN getting glutoned make symptoms worse? I have weakness in my hands when i type, i get some twithcing in mt lower calves, had some bad headaches that i think are like sinus headaches(i do have season allergies so maybe that's it),. Can it be worse trying to go free from gluten and then getting attacked? That doesn't make a lot of sense or maybe it makes a lot of sense i don't know.

I just find it real weird all the sudden i have weak muscles,twitching, maybe even a burning blood sensation, my right pinkie all the way down can go numbish and tingle as well. No diarreah, no real stomach pain, didn't even get that right rib cage pressure back i got something that felt like my body was being poisoned or attacked(of course it was).

So here i sit not knowing whether or not for sure i am anything yet this stuff is happening fast. I go from nothing at all(maybe some slight fatigue and that rib cage pain) to all the sudden i think i have serious nerve problems. My hope is that i am allergic to gluten and i can stay away from it and let my body heal properly. I just found it real weird to go from nothing to muscle fatige that fast and thinking had i NEVER started the gluten diet that may have not happened. maybe it would have but i kind of have afeeling it wuldnt of.

Hard to explain all this sorry for being all over the place.

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I can tell you that a lot of people report this effect- they try the diet, and then the

first time they have gluten, the symptoms are far worse than ever before. It's

certainly not universal, but is quite common. It's really very good proof that gluten

is no good for you, if it makes you sick this way.

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Oh absolutely! You can research this board and find many stories of people glutened for the first time after being gluten free for even just a few weeks. I had one bowl of soup (not even a piece of bread) and was bed ridden with joint pain, fatigue and a nasty DH rash for 3 weeks. It's very possible.

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I have only been gluten-free for 4 months, and I was only accidentally glutened in that first month. I didn't find my reaction to be much worse than it had been in the past when I wasnot gluten-free, but it was definitely much more noticeable than it had been. I attribute that to the fact that the inflammation and symptoms were starting from a low level... let's rate it as a 2 on a scale of 1-10 for symptoms. When I was glutened, I had a reaction of a 7; going from a 2 to a 7 was very noticeable. When I was eating gluten all the time my body was in a constant state of inflammation which I would rate at a 5; so when I ate gluten and got a reaction of a 7 it wasn't such a change in symptoms to go from a 5 to a 7....

Does that make sense? LOL

Perhaps when I've been gluten-free longer I'll notice more severity in my reaction to gluten, but for now I would have to say my reactions are not worse than when I was undiagnosed.... But that's just me. :)

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Yep, that does happen. Bunnie is right, if your body reacts badly to gluten you shouldn't eat it. Most people with celiac don't know they have it. Symptoms are often in places besides the gut. Symptoms in other parts of the body are sometimes misdiagnosed as some other condition. Some people are "silent celiacs" and have no obvious symptoms aslo.

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I had 4 days of pretty rough intestinal pain and cramping after 5 weeks gluten-free and then getting glutened. The following 4-7 days were lighter symptoms followed by the last day of a 2 week recovery where I actually felt good again, as if it hadn't happened. And I didn't have a cheeseburger or anything. Mine was just cross contamination.
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This reaction to eating gluten, after being off of it awhile, does not happen to normal people who are eating a glutenfree diet for awhile for other reasons, such as living in a gluten free home with family members.

So it is unique to the celiac and gluten intolerant. If you had not started the gluten free diet, you would have still developed those neurological symptom reactions, but the onset may have been gradual enough that you didn't feel it all at once - we should call it the boiled frog syndrome, where the frog gets put in a pot of tap water on the stove.... and doesn't notice that the water got really hot, until it is too late.

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amiglute, going gluten-free for sure made symptoms of glutening suddenly worse for me. It blows my mind that six months ago I was eating pasta and garlic bread and feeling noooo pain... but this week I did a mini-gluten challenge and had a super severe reaction!!

Who knows why our bodies just realize they don't want this stuff after we go gluten-free... and if any gluten sneaks back in, the body knows how to tell us loud and clear, "Oh hail no!"

OK that's my very scientific explanation of it lol...

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I had cramps and a D attack this Monday morning... And the different thing I ate was a bloody "gluten-free" mini pizza crust. Yeah, right...

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After my celiac diagnosis 1.5 years ago, I went gluten free. I was accidentally glutened once soon after and not again until a few weeks ago. Both times I had absolutely no reaction! Sometimes a little part of me wonders whether I truly do have celiac...but in my mind I know that I do. Weird. :blink:

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"Does going gluten free even for a short time and THEN getting glutoned make symptoms worse?"

It did me! I think it is too sick on full time gluten to let you know. But when it has a chance to recover even a bit, it will let you know! It is actually a very good thing. It is super motivating!

Diana

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I have been gluten free for six years, and YES, an accidental exposure to gluten brings a swift and extremely unpleasant reaction. And, 1desperateladysaved, it is a very strong motivator.

I have learned so much from you people on this site. I don't know how I would have ever gone from my original "I will never be able to eat anything" to "It's just routine" without y'all. Thanks a million times.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
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    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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