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Gi Symptoms And Canker Sores After Going Gluten Free
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I was diagnosed by "accident" with Celiac. One of my sons had a test for Celiac disease during a routine screening for growth and development issues. When he was diagnosed, we were all tested. I, and one other child, came back positive. None of us had any symptoms, at least the "classic" GI symptoms.

Now, for years, I had canker sores, off and on, some years worse than others. But, I remember a particularly bad year when I had them maybe 4 times, probably after my 2nd son was born. My dentist told me it was a virus and prescribed Valtrex. Nothing seemed to work until I stopped using flouride toothpaste. Why this worked was a mystery to me since I also used a flouride mouth rinse with no issues. The theory that is was some sort of additive in the toothpaste.

Then, years later (recently), when I was looking into the symptoms of celiac and saw that canker sores were a symptom, I thought I had found the answer.

Well, I've been gluten-free for just over 3 weeks. Like others I've seen on the board, I experiences a few days of withdrawal symptoms, when I felt tired and had migraine-type headaches. But, after about 4-5 days, I felt better and the bonus was that I no longer felt tired when I woke up in the mornings. No longer did I feel like I hadn't slept a wink when I supposedly had gotten 8 hours of sleep. This, if anything, was probably my only noticeable celiac symptom (that I'm aware of so far).

About a week and a half ago, I ran out of my toothpaste and started using one we had around the house. Within a few days, I got three canker sores. I finally put two and two together and realized that it could be the toothpaste. I stopped using it, finally got my old brand back, but the canker sores just are not going away!

Also, like I said above, before going gluten free, I didn't have any noticeable GI symptoms. But, now, even though I don't have diarrhea, I have VERY loose stools. Sorry to be so gross. But, there is just no form at all. Why would this be? Is it from some other issue? Like before, eating gluten made me slightly constipated, but not really, enough to have more solid BMs, and now that I'm off, some other issue I have is causing them to be the opposite?

Sorry to be so gross.

But, I feel like I have reverse celiac or something. Like, I had no symptoms before going gluten-free (other than a positive blood test, confirmed biopsy, and maybe feeling tired). And, now that I'm off of gluten, the symptoms are all starting to appear. What gives?

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I was diagnosed by "accident" with Celiac. One of my sons had a test for Celiac disease during a routine screening for growth and development issues. When he was diagnosed, we were all tested. I, and one other child, came back positive. None of us had any symptoms, at least the "classic" GI symptoms.

Now, for years, I had canker sores, off and on, some years worse than others. But, I remember a particularly bad year when I had them maybe 4 times, probably after my 2nd son was born. My dentist told me it was a virus and prescribed Valtrex. Nothing seemed to work until I stopped using flouride toothpaste. Why this worked was a mystery to me since I also used a flouride mouth rinse with no issues. The theory that is was some sort of additive in the toothpaste.

Then, years later (recently), when I was looking into the symptoms of celiac and saw that canker sores were a symptom, I thought I had found the answer.

Well, I've been gluten-free for just over 3 weeks. Like others I've seen on the board, I experiences a few days of withdrawal symptoms, when I felt tired and had migraine-type headaches. But, after about 4-5 days, I felt better and the bonus was that I no longer felt tired when I woke up in the mornings. No longer did I feel like I hadn't slept a wink when I supposedly had gotten 8 hours of sleep. This, if anything, was probably my only noticeable celiac symptom (that I'm aware of so far).

About a week and a half ago, I ran out of my toothpaste and started using one we had around the house. Within a few days, I got three canker sores. I finally put two and two together and realized that it could be the toothpaste. I stopped using it, finally got my old brand back, but the canker sores just are not going away!

Also, like I said above, before going gluten free, I didn't have any noticeable GI symptoms. But, now, even though I don't have diarrhea, I have VERY loose stools. Sorry to be so gross. But, there is just no form at all. Why would this be? Is it from some other issue? Like before, eating gluten made me slightly constipated, but not really, enough to have more solid BMs, and now that I'm off, some other issue I have is causing them to be the opposite?

Sorry to be so gross.

But, I feel like I have reverse celiac or something. Like, I had no symptoms before going gluten-free (other than a positive blood test, confirmed biopsy, and maybe feeling tired). And, now that I'm off of gluten, the symptoms are all starting to appear. What gives?

It was the same for me, have not really understood it myself. There were a few things that as I look back now I can relate but nothing was just obvious and evident. I was not the typical case that is printed in textbook with all the issues with the stomach. I was having issues for the last 3 years but they were mild, I was not losing weight, if anything I was gaining. Docs had no clue.

I had become so tired, sleeping 10+ hours a night and I finally decided to do a liver cleanse to see if maybe I could raise my metabolism. And that when my system went nuts. Docs felt I had reacted to the herbs but what was uncovered was my under-lying health issues. So the way I make since of this is it is like a pressure cooker in your body. We can hold this in our system and it can be inactive for a long long time but when it decides to flame you then finally have issues. I think for me, stress finally was the trigger.

It's been a year for me now since I got real sick, have been on a gluten-free diet for 10 months and while alot has gotten better, I am still putting out fires in my body, waiting for the day when this all settles and I can hopefully live without the constant attacks.

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What's weird is -- I eat pretty clean. A lot of protein (chicken and egg whites), veggies, salads, and I try to steer clear of gluten-free "substitutes" except in moderation. But, last night, I indulged on some gluten-free pretzels (about 20?), and my system was more normal today. You would think it would be the opposite. That my body would react differently if I ate a lot of the "bad for you" gluten-free junk.

Also, even though I had switched to non flouride toothpast, I was using a mint kind. Last night, I broke down and opened my normal cinammon one, also flouride-free. And, wouldn't you know? Today, I woke up and the canker sores were 80% gone!

Weird!!!

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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. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • 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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