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How Can Getting Glutened Once Cause Months Worth Of Symptoms?

srthomas21

By srthomas21
in Coping with Celiac Disease

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srthomas21 Explorer
srthomas21
Posted

I've read these forums quite a bit and there seems to be quite a few posters on here that say if they get glutened once they can have symptoms that persist for months. I'm not saying it's not true but I'm just wondering how this is even possible since the inflammation is caused by eating gluten, once the body has gotten rid of it shouldn't the immune response go away?

I'm just trying to understand the physiological reasons behind months worth of symptoms from one glutening.

For those that suffer from prolonged symptoms are they primarily gastro related or other things? The reason I ask is I have been gluten free for 6 months and I still have brain fog, headaches, light sensitivity, neuropathy etc. I feel like I've been very strict with my diet but my one weakness is eating out at lunch. I've picked places that understand Celiac and assure me they know how to deal with cross contamination but who knows, maybe I am still getting gluten somewhere.

I want to feel better, tired of not feeling good ever. It would be nice to wake up one morning and not think about why I don't feel good, why I'm tired all the time, why I have pressure in my head, why my night vision sucks and why I see light rays from nearly any light source. THIS DISEASE SUCKS!

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cbear6301 Explorer
cbear6301
Posted

I wish I knew. I got glutened over christmas and am still having gastro issues , I took the advice of everyone here and changed my diet to bland and gentle foods but still I suffer from the gastro stuff. I went to the dr yesterday and she said the glutening can really mess you up, especially if its from a wheat source and not just cross contamination.

mindwiped Rookie
mindwiped
Posted

As I understand it, you have symptoms due to the damage that gluten causes you. Intestinal villi and damaged nerve endings do not heal as quickly as your system vacates the gluten. Also, someone on here once posted about the psychological addiction that one can have to gluten. Personally, eating out at lunch would be given up, as even when they act like they understand, they don't always. Give yourself a month or two truly gluten free, without eating out, and see if things are improving. The neuro symptoms won't be perfect, as it takes a LONG time for nerves to heal, if they can at all, but a solid month should allow your intestinal villi to heal, and the GI symptoms to subside some. Also, if you're now to the disease, you might try lo/no dairy. The part of the villi that absorb dairy is the part that gluten destroys, so if it can't get digested, sometimes the dairy just causes trouble. Also, write down exactly what all symptoms you are struggling with, in as much detail as you can, and review the list in a month. If there are things that were on the list that are no longer giving you trouble, there's a visible sign of healing.

lovegrov Collaborator
lovegrov
Posted

People who say they have weeks or months of symptoms after one glutening are a VERY, VERY tiny percentage of people who have celiac. Although I obviously can't prove it, I suspect those folks are either getting gluten they don't know about or they have something else going on that exacerbates celiac symptoms.

richard

dilettantesteph Collaborator
dilettantesteph
Posted

I agree with Richard. I think that glutenings resolve completely within 2 weeks. Ongoing symptoms are a sign of lack of complete healing, or ongoing gluten consumption.

Initially my glutenings seemed to last a long time, but I think it was because I was still healing. I remember one glutening that seemed to last a month. Now, after 2 years gluten free, most of the symptoms go away in one day, though there are minor symptoms that can last as long as a week.

I don't eat in restaurants at all.

Jestgar Rising Star
Jestgar
Posted

I could see it. The effects of the glutening might be over in a few weeks, but then a person could swing between diarrhea and constipation as their intestine tries to recover. Diarrhea could cause electrolyte imbalances which could lead someone to crave salt, or have neuro issues or whatever. Constipation might lead a person to drastically change their eating pattern, or supplements to try to get their bowel back under control, which could lead to other issues. Healing in the person could be slowed, which prolongs any effects.

Every body is different.

tarnalberry Community Regular
tarnalberry
Posted

People who say they have weeks or months of symptoms after one glutening are a VERY, VERY tiny percentage of people who have celiac. Although I obviously can't prove it, I suspect those folks are either getting gluten they don't know about or they have something else going on that exacerbates celiac symptoms.

richard

Ditto this. The celiac autoimmune reaction can be self-sustaining for two weeks, so, I can honestly see two or three weeks for someone sensitive, but months leads me to believe that there is an underlying complication.

However, your post implies something a little different. You are talking about only having ever been gluten free for six months, minus any mistakes made at the beginning, and minus every time you eat out for lunch when you're not certain they have avoided contamination. Do you actually know that you're completely gluten free? (I would probably avoid restaurants until you can be quite confident of that.) Additionally, if there has been damage from the years and years you were not gluten free, but your body needed you to be (which is a guess, but with an average 10 years until diagnosis in the US, a guess I feel fairly safe with ;) ), until that is repaired, it's going to be hard to see a whole heck of a lot of improvement. Everything you've mentioned can be caused by or exacerbated by vitamin deficiencies, which are quite common when relatively recently diagnosed with celiac, and sometimes take more than just a single multi-vitamin to "correct". (Of course, there can be other issues - I have fibromyalgia and chronic migraines, the first which developed after I was gluten free, the second seems unconnected as it hasn't changed (until I got out of my old job, and pregnant ;) ). Both of these also leave me sensitive to light a fair amount of the time.)

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Kathleen Smith Contributor
Kathleen Smith
Posted

I first went gluten free April 2009. I honetly thought I was eating gluten free for the first four months. But I wasnt. I had some hidden gluten in my dressing, my rice cakes, my seasonings. I didnt know it then. I think your first few months are a serious learning curve. I was feeling so much better than previous I really thought I was doing a good job. Then in August, I fell into the tramp of cheating about once a week while going out with my friends. I did that all of August. I was so sick everyday in September and August. I went back to doctor told her I cheated in August and at first she didnt think that could be what was causing my nausea symptoms (severe) nausea. She ran all these additional tests and they were all normal. She then said to me she tought it was from my cheating in August. It is amazing. It really stunk being so sick those two months but to be honest it was the best thing that ever happened to me because it made me realize Celiacs cannot cheat. You just cant do it. Over those two months I became more educated on hidden gluten (with the help of this site)and now I can say since that two month of being sick episode everything has been just getting better. Good luck to you

srthomas21 Explorer
srthomas21
Posted
  • Author

My problem is I don't have gastro symptoms so its hard to know if I'm getting gluten or if I have something else going on. All my symptoms are weird so it's just hard to tell what is going on.

I'm very careful with the diet. My mom has Celiac so I knew what it was all about before I had to go gluten free. I guess I'm going to cut out restaraunts for awhile and see if that helps.

Thanks for the replies

srthomas21 Explorer
srthomas21
Posted
  • Author

Oh, I forgot to add that I also have Ulcerative Colits which I had my colon removed 10 years ago. As I was going through the diagnosis for UC they also checked for Celiac pretty thoroughly and at that time 10 years ago I did not have it.

All my crappy neuro symptoms came about 1 year ago so I guess I could have had celiac a few years before that but up until 1 year ago I felt great.

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