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How long to clear gluten?


busymama7
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I have posted about my 8 year olds chronic canker sores before.  She had three a couple weeks ago and I finally decided gluten was the next thing to try to eliminate. She went down to one last week but now has 7. We have been careful. My good friend has a daughter that is GF so I was already familiar with a lot of what I looks like and she's been helping me. I have not however eliminated it from the house or been super careful about cross contamination.  It's been almost 3 weeks.  I planned to hold out for a few months to see if it really made a difference because other things have seemed to work for a time but then she will break out again.  I also figured it would take time to get out of her system. But it's so hard to stick it out when instead of seeing any improvement or even staying the same she's gotten much worse. 

I have found (another!) doctor that I'm going to try this week or next and probably ask for an actual celiac test (I know she has to be eating gluten before the test).  I'm at such a loss and desperate to find an answer for her. This has been going on for two years and no one has taken me seriously.  She hardly ever is free from them completely now where a year ago she would sometimes goes weeks between them.  Sometimes she has as many as 8 at a time.

so stick it out with the GF? Wait for more testing? What to do?!?! 

 

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took me four weeks - many years ago.

 

now - I react not to gluten - but to the yeast/molds in breads. doesn't take much to make me react to those, but I can have gluten without reacting. (re: pasta).  but it again - took me several weeks to get it all out of my system when I went back to avoiding yeast breads.

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It takes 6-8 weeks for it to be fully out of your body assuming you are not receiving more via cross-contamination, etc.

IF you want to do Celiac testing, she will have to go on gluten for a few weeks at least or the result will not be accurate. 

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3 hours ago, Indigo Blue said:

I'm not sure how long it takes for gluten to clear your system, but I, too, have been a life-long sufferer of those terrible mouth sores. Four years ago, I decided to eliminate gluten (down to celiac levels so I could be sure), and within one week, I had no new mouth ulcers starting to appear. I have messed up several times and gotten glutened, and each time another sore or two or three pops out. These aren't as bad or as painful as the ones I had before going gluten free. They also don't last as long and are smaller. After an accidental glutening, everything is okay with three or four days. 

My two cents...I think it's a good idea to get tested, but just remember it's sometimes hard to get an accurate positive. If your daughter clears up off gluten, of course, she should still be gluten free even with a negative celiac test.

I'm sorry your daughter has these. They are so very painful. I once read an article about them that said that these types of ulcers (ones relating to celiac or sensitivity) are a different type than the regular ones people get from time to time. I wish I knew the link, but I don't. It said these were larger, longer lasting, and more painful. 

Anyway, I hope you find the answer even if leaving out gluten doesn't help. But be sure to completely eliminate all gluten so you will know for certain!! I think you would see a difference In within a week, if that is the problem, even though the gluten may not have cleared from her system completely. This has been my experience, anyway.

In the meantime, know that toothpaste containing sodium lauryl sulfate is extremely irritating to an existing sore, so if you can find some toothpaste without that, it would make her more comfortable when she has to brush her teeth. Bee propolis spray also helps, but it contains alcohol and will sting like crazy for about 20 seconds after applying. If she can withstand the pain, this stuff really makes them feel better so much faster. There used to be a prescription for these ulcers that very few knew about (even my doctor had to look it up) but it has been taken off the market. I don't know why. It worked great, but not even as great as the propolis spray. When I could no longer get the prescription (I begged my doc to let me have lots and lots of refills because there was always a sore in my mouth in those days) I was so relieved to discover that bee propolis spray actually works even better. I've tried everything out there, and by far, the propolis actually helps better than anything else you can buy right now.

This one doesn't have alcohol: https://www.amazon.com/gp/product/B013MHLXKS/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

And this one does:  https://www.amazon.com/Canker-Rid®-Immediate-Restore-Quality-GUARANTEED/dp/B003AS74JO/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1528384175&sr=1-2&keywords=durham's+canker+rid

I've tried both and the Durham's works better, but is SO painful to apply. If she can bear 20 seconds of agony, that sore will begin to lose it's sting within 24 hours.

If I were you, I would let her go gf for two weeks (completely gf). If this helps, then I would go to the doctor to see what tests she needs. If going gf doesn't make any difference, then you can start over and go from there. The spray and toothpaste will make life more bearable for her until you can find an answer.

Hope this helps!!

 

Editing to add: I found some information about the different types of sores I was talking about.

https://www.medicalnewstoday.com/articles/303311.php

/

 

 

 

Thank you! This is some really helpful info. We had already put her on an SLS free toothpaste a year or so ago.  I will try the spray without the alcohol as she won't do it if it stings. We have found alum to work well for ours but she only did it once and won't again because of the sting ?

I fear I have not been careful enough to know for sure. She has shared our toaster and once out of desperation I peeled off the cookie part of an ice cream sandwich and let her eat the ice cream. Oh and she had sacrament bread at church. ?. She is struggling a lot with not eating gluten and complaining daily/all day long about it so I was starting to waver and considering letting her go back on especially as I want to push for a celiac test anyways and she'd need to be eating it for the test. Ugh. I feel for her. These things are so hard and food is EVERYWHERE. 

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2 hours ago, busymama7 said:

 

I fear I have not been careful enough to know for sure. She has shared our toaster and once out of desperation I peeled off the cookie part of an ice cream sandwich and let her eat the ice cream. Oh and she had sacrament bread at church. ?. She is struggling a lot with not eating gluten and complaining daily/all day long about it so I was starting to waver and considering letting her go back on especially as I want to push for a celiac test anyways and she'd need to be eating it for the test. Ugh. I feel for her. These things are so hard and food is EVERYWHERE. 

 

I'm sorry to say--you are right--she was re-exposed each of those times.

I know she's not very old, but maybe it would be helpful to talk this through with her. To test for Celiac, she will at least at first have to eat gluten for awhile, and then pursue the blood testing. The gold standard is the endoscopy.  There are some serious repercussions if she has Celiac. I hear people say--don't bother with the testing--it can be inaccurate. That is true sometimes. However, going on a completely gluten-free, Celiac-safe diet is a very serious undertaking, and something she will have to do for the rest of her life.  IF she does have Celiac, the potential risks for her continuing on gluten are huge. Growth issues, digestive issues, lack of proper nutrition due to blunted villi, etc.  

So this is one of those things where you could do a Celiac level diet without the testing, but you need to consider if one day she might want the testing, or if you would wonder if all the efforts to avoid cross-contamination are truly necessary.  Some people are gluten-sensitive and cannot eat gluten without problems but they might be able to tolerate sharing a toaster, etc. It just depends.  

 

 

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Yes I know that she was being re exposed in those situations but I was hoping that it would still show enough of an improvement that I would know we were on the right track. I had a ped refuse to do the celiac test because she has no GI symptoms. I think I have a lead on another better doctor so will be following up on the ASAP. (Her brother had to have surgery this week for a broken arm so we've been swamped with that this week)

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My DH is Celiac and will get those sores in his mouth as one of his symptoms.  Are you sure you're not using the same knife to cut butter, breads, same peanut butter and jelly jars etc.. that has been contaminated? Careful with dressing and sauces, gum, mints and certain candies.  Processed meats, soups and broth?  Just trying to think of anything that's easy to forget or overlook.

Hope you find answers soon.  

ETA: DH can not have the communion bread at church either.

ETA: DH had a false negative blood test.  You really can't just cut back with gluten.  It needs to be 100% out of your diet or you're basically starting over every time you take a bite.  

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23 minutes ago, 1GirlTwinBoys said:

My DH is Celiac and will get those sores in his mouth as one of his symptoms.  Are you sure you're not using the same knife to cut butter, breads, same peanut butter and jelly jars etc.. that has been contaminated? Careful with dressing and sauces, gum, mints and certain candies.  Processed meats, soups and broth?  Just trying to think of anything that's easy to forget or overlook.

Hope you find answers soon.  

ETA: DH can not have the communion bread at church either.

ETA: DH had a false negative blood test.  You really can't just cut back with gluten.  It needs to be 100% out of your diet or you're basically starting over every time you take a bite.  

No I have not been careful not to cross contaminate. I know how important it is for celiac but it was an experiment and I was wrongly hopeful it would still show an improvement if it was going to.  I really hope we can get a definative answer with a blood test as this is a royal pain. I can't imagine doing this forever and I have a hard time thinking I will stick to it without knowing its needed.  But since we are in this far I will eliminate all cords contaminations and such and see if that helps. She has six right now. Or maybe I should wait to get strict until after a blood test? 

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7 hours ago, busymama7 said:

No I have not been careful not to cross contaminate. I know how important it is for celiac but it was an experiment and I was wrongly hopeful it would still show an improvement if it was going to.  I really hope we can get a definative answer with a blood test as this is a royal pain. I can't imagine doing this forever and I have a hard time thinking I will stick to it without knowing its needed.  But since we are in this far I will eliminate all cords contaminations and such and see if that helps. She has six right now. Or maybe I should wait to get strict until after a blood test? 

You don't want to be eliminating gluten at all of you're going to do any kind of testing.  She needs to be on it for weeks before you do that.  Also, the blood test are very often false negatives so please don't assume she is not Celiac, or doesn't have a gluten intolerance based on a blood test.  My husband's test was wrong and I also had one of my twin boys tested recently and it came back negative.  Based on family history, I went ahead and put him on a gluten free diet and his behavior and attitude changed drastically.  I have posted about it here if you'd like to look that up and read about it.  

I'm not gluten free and neither is my 15 year old daughter, or his identical twin brother. It's not fun or easy trying to manage this but it can be done.  It will take a lot of research and just being careful.  And a lot of planning!  You can't just pull in somewhere and get food like before.  Their options are limited to say the least.  

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I really feel for her, poor thing! I used to have a lot of canker sores when I was younger but only once in a while over the last 35 years. All of a sudden my mouth erupted with 6 - 7 sores at once 4 weeks ago. I was miserable and could barely talk. I never had so many at once. I tried everything but nothing seemed to help much. They disappeared as suddenly as they appeared, so I'm thinking it was maybe viral or autoimmune. (I currently have 2 autoimmune diseases.) I am gluten-free but not to celiac level - I know I am constantly exposed in our house. I hope your daughter gets relief!!

ETA: When I started my current diet, which eliminated gluten, dairy, eggs, soy, etc. I would react strongly if exposed to a few of the items I eliminated, where I never noticed a reaction previously. For example, I never noticed any reaction from eating eggs, but after eliminating them I react strongly when I am exposed to them now. If your daughter is reacting to gluten, she may have had the increase in canker sores from an exposure after eliminating it.

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13 hours ago, busymama7 said:

I had a ped refuse to do the celiac test because she has no GI symptoms. I think I have a lead on another better doctor so will be following up on the ASAP. 

 

Please do. I brought up issues with my son for years before I was listened to. His first symptoms were only the growth issue. Finally things got really bad and he was having the stomach problems and he started losing weight. Sometimes you have to fight for the right diagnosis.

Here is my take on the "trial off gluten" thing. I would not be able to do it as a parent.  You are going to have her off gluten entirely for eight weeks before you can even be sure of how she will respond. What if she is totally better? Are you really going to want to put her back on the gluten to do the blood testing then? I wouldn't want to.  I hear a lot of stories about this--I took my kid off of gluten and I don't want to put him back on for the testing--he/she feels so much better! Again, the trouble with this is, you don't know if the child has Celiac or not, so you don't know how careful you need to be, and neither does the child. When the child is in high school and surrounded by pizza, will he/she be as careful if he/she doesn't know for sure they have Celiac?  My vote is, let her get her gluten in now (she's already contaminated), let her have her fave gluten foods now, go get that blood testing done in the next two weeks or so, and see if they want an endoscopy. In the meantime, start researching gluten-free food alternatives for her.  

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I get mouth sores as a celiac symptom. However, just throwing this out there for something to try, and it's easier than eliminating gluten, but it may be baking soda in toothpaste. I was still getting sores on a regular basis even when not gluten related. My dentist and I finally figured out that I have a bad reaction to baking soda in my mouth. The dentist office uses a baking soda spray to clean teeth plus many kinds of toothpaste contain baking soda. I stopped using toothpaste with baking soda (and the dentist doesn't use the cleaning solution on me anymore) and my sores went away. The dentist said she has several other patients who get sores from baking soda. Some people are really sensitive to the pH change. So it would be an easy thing to try for your dd while waiting for everything else. 

Oh, I can eat products cooked/baked with baking soda. I just can't put baking soda directly into my mouth.  

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I get mouth sores as a reaction to gluten. I had them chronically from childhood until three weeks after I went gf 6.5 years ago. They start forming again within a few hours of exposure to gluten (which doesn’t happen often, as I’m very careful). 

I do not know if I have celiac’s. I went gf for my (then) nursing baby and felt so much better so quickly that I never could go back on gluten to have the year done. 

Your daughter has definitely not been gf during this trial period, I’m sorry to say. I’d have sores from that ice cream sandwich, or the communion bread (as well as many other symptoms: brain fog, severe muscle pain, joint pain, exhaustion, mood challenges). I cook my toast in the oven so I’m not exposed to any wheat in the toaster. 

I wish you the best as you work through this for your daughter. I will say, as someone who can now look back and see how much my undiagnosed food allergies/sensitivities affected my health and happiness even as a child, it’s completely and totally worth the effort I have to put in every single day to help my allergic/sensitive kids avoid their problem foods so they never feel like I felt all the time. And, yes, it’s hard and a lot of work. But it gets easier. You get good at it.

And a child who remembers how they used to feel (once you get them to healthy) is often their own best advocate. My middle guy never, ever pushes for food that he reacts to. He knows how bad he feels if exposed. And my youngest recently decided (at 4) to quit dairy because it was inflaming his eczema. In the three months since he quit, he has never wavered. He was so tired of his skin hurting and loves that the eczema is gone. Three months is a long time when you are 4. ? 

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18 minutes ago, BooksandBoys said:

Your daughter has definitely not been gf during this trial period, I’m sorry to say. I’d have sores from that ice cream sandwich, or the communion bread (as well as many other symptoms: brain fog, severe muscle pain, joint pain, exhaustion, mood challenges). I cook my toast in the oven so I’m not exposed to any wheat in the toaster. 

 

THIS is my DH exactly!  And I have to cook his and my son's toast in the oven instead of the toaster.

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10 hours ago, Mom-ninja. said:

I get mouth sores as a celiac symptom. However, just throwing this out there for something to try, and it's easier than eliminating gluten, but it may be baking soda in toothpaste. I was still getting sores on a regular basis even when not gluten related. My dentist and I finally figured out that I have a bad reaction to baking soda in my mouth. The dentist office uses a baking soda spray to clean teeth plus many kinds of toothpaste contain baking soda. I stopped using toothpaste with baking soda (and the dentist doesn't use the cleaning solution on me anymore) and my sores went away. The dentist said she has several other patients who get sores from baking soda. Some people are really sensitive to the pH change. So it would be an easy thing to try for your dd while waiting for everything else. 

Oh, I can eat products cooked/baked with baking soda. I just can't put baking soda directly into my mouth.  

 

Mom-ninja, did you always have these or did they show up at a specific time of your life? My mom has been getting mouth sores and I wonder if she should look into this.

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8 hours ago, 1GirlTwinBoys said:

THIS is my DH exactly!  And I have to cook his and my son's toast in the oven instead of the toaster.

 

We did this until there was one of those killer Kohl's sales at Black Friday when I got a griddle, a toaster and a rice cooker for $12.  So now that toaster and griddle are dedicated gluten-free.

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On 6/9/2018 at 8:29 AM, cintinative said:

 

Mom-ninja, did you always have these or did they show up at a specific time of your life? My mom has been getting mouth sores and I wonder if she should look into this.

Just showed up a few years ago. The dentist and my allergist said, "People can develop such sensitivities at any time. We don't know why. Just happens." 

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