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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Kissing Reaction
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16 posts in this topic

Crazy question I know but does anybody here think that they have a reaction from kissing their partner when they have eaten gluten?  How long do you leave and what do you do to deal with this threat?

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Yes, I think I have.  Tooth brushing should help.  If you are extremely sensitive, you may want you partner to be gluten free.  My daughter's boyfriend did that.  He's a really sweet guy.  He's more careful than my husband was.

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I can't say for sure that I have or not, but I've been pretty careful. If we're out for dinner or a beer or something, its no kisses until teeth are brushed. If he had some several hours before (assuming lips are pretty clean by then), then a little peck seems to be ok. No making out until guaranteed clean, though. So far so good, as far as I can tell.

It's a precaution, but a necessary one, and one your partner has to be willing to comply with and let you know when they've been eating/drinking gluteny things. I would never make my partner go completely gluten free (outside my house, at least), just like he doesn't expect me to become a vegetarian, but most nights together I cook and he brings wine, so it works out.

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i did in the beginning (i could not believe it!) and it set me back.  since then, if we are home, he eats mostly gluten free.  he likes his beer, though, so he has to brush up.  (i even bought those little 'wisp' disposable toothbrushes)  easy enough and no worries :)

 

just in case it was my 'magination, i would like to test it out again, but i am chicken.  i don't think he will do it, anyway, just in case......

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Phew, I am so relieved!  I thought it was all in my head.  I always felt slightly under par when my boyfriend was round.  We aren't seeing each other any more, but it will explain why I just wasn't quite right.  He got fed up of the rules for gluten free etc!  Nice.  Guess it's better to find out now than later huh?!

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Three days after he went I had lost all the puffiness and off colouredness that I had developed... Same as when I eat say dairy, I put on two pounds of water!

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it's kind of a dealbreaker, right??!!  i'm glad you're not wasting your time on somebody who doesn't care if they are making you ill  :) 

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This condition does let you know which people in your life care more about their own stomachs than your health.

 

My daughter did not ask her boyfriend to go gluten free.  He did it on his own when he found out how sensitive she was.  That was before they even kissed.  He seems like a really caring individual.

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Well, that wasn't going to work out, then. If your (potential) significant other can't deal with your life-long condition, then screw that.

 

When you find the right guy, he'll be willing to bend-over backwards to keep you from getting sick, which really just means keeping a toothbrush around and not bringing bread into the house. And never feel that telling someone about your situation from the get-go will turn them off or something, because if they aren't willing to compromise from the beginning, then it's not worth the bother.

 

Glad to hear you're feeling better!

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It takes both partners to work on this issue!  No beer or gluten kisses.  A kiss is ok but a KISS is not!!!!!

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I think I stupidly really didn't pay much attention to this and then wondered, whenever he was round, why I felt worse!  I did actually say to him that I thought I was allergic to him... he wasn't impressed but I don't think the message sank in for either of us.  In future I will be stating my condition up front and hopefully that will sort the wheat (haha! pardon the pun) from the Chaff - It's an english saying!!

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This thread made me smile. My wife is great but she enjoys her gluten. I'm a very sensitive celiac with quick intensive neuropathy if poisoned. When it's time for bed, I know things might go my way if she brushes her teeth. If no teeth brushing, oh well...

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I'm pretty sure I got glutened by kissing my husband after he ate a roll one day.  He's careful now to wipe his mouth off before kissing me, but I do worry about what lurks in his beard!

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My ex was terrible about this. He hated the fact that I had Celiac Disease and called me paranoid when I told him that he shouldn't french kiss me after eating Frosted Flakes. He had the worst attitude, and it got to the point that I was afraid to say the word "gluten" around him for fear of him getting angry. I'm glad he reacted that way because it showed me what kind of person he really was (he was very selfish about other things, too) and what a future together would be like. We had dated for almost three years, and I'm so glad I didn't marry him. The fact is that if someone can't support you now when it's easy, they would never be able to support you if you developed a secondary condition associated with long term complications of Celiac. 

 

My current boyfriend realized on his own that he needed to brush his teeth (I got a smart one!). So he either brushes or eats gluten-free with me when we're out. He also bought a separate pan and cooking utensil for his place, and he watches out for CC whenever we're out. He's the sweetest, and I'm incredibly grateful to have met such an empathetic man. Forgive me, but I can't stop bragging about him!  :D

 

Advice from my doctor - "If he can't do something as easy as brush his teeth so that you don't get sick....it's time to start looking for another boyfriend..."

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My ex was terrible about this. He hated the fact that I had Celiac Disease and called me paranoid when I told him that he shouldn't french kiss me after eating Frosted Flakes. He had the worst attitude, and it got to the point that I was afraid to say the word "gluten" around him for fear of him getting angry. I'm glad he reacted that way because it showed me what kind of person he really was (he was very selfish about other things, too) and what a future together would be like. We had dated for almost three years, and I'm so glad I didn't marry him. The fact is that if someone can't support you now when it's easy, they would never be able to support you if you developed a secondary condition associated with long term complications of Celiac. 

 

My current boyfriend realized on his own that he needed to brush his teeth (I got a smart one!). So he either brushes or eats gluten-free with me when we're out. He also bought a separate pan and cooking utensil for his place, and he watches out for CC whenever we're out. He's the sweetest, and I'm incredibly grateful to have met such an empathetic man. Forgive me, but I can't stop bragging about him!  :D

 

Advice from my doctor - "If he can't do something as easy as brush his teeth so that you don't get sick....it's time to start looking for another boyfriend..."

 

You are so right about all of this.  It is when you are facing adversity together that you get a real measure of a person.  Good for you to not settle for someone who was not a good person for you.  A person who is not willing to take measures to keep you from being sick is not a person with whom it is worth spending a life together.

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. 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If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
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