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3+ Weeks Of Flare-ups And Counting


splash

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splash Rookie

I have been gluten free for 1.5 years and haven't had any major DH symptoms since I started the diet - until now. When I was a teenager I had the worst rashes on my hands, and at the time we thought it was "seasonal" (that seems hilarious now). It would mainly show up on my palms and between my fingers, itchy blisters either like heat blisters or deep below the skin that would dry up and crust leaving raw skin.

Just in the past month, after almost no blisters for 1.5 years, I am having flare ups almost daily again on my hands, even now that I've spent two weeks not eating out, not taking any chances. Have others experienced that the blisters keep popping up weeks after a reaction? I can't have had a very significant amount of gluten - the most that I can think of is that the guy I was dating at the time drank beer before kissing me, and now thinking back I do remember noticing the beer on his breath. And by the way, can I state for the record that this possibility is so disturbing to me - what an annoying thing to have to tell someone when you're first dating!


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YoloGx Rookie

I don't get DH however I have gotten glutened several times from kissing guys I have dated. Each time I got a major reaction. And yes its often been beer or supposedly safe whiskey. (no, I don't drink alcohol...)

I agree it really is socially inconvenient to put it mildly. You just have to be clear on this however. I am now imagining an invisible chastity belt on my lips! Honestly it makes me less than enthusiastic to kiss someone unless I absolutely know it isn't a problem for him to brush and rinse his teeth and that he gets it that I need him to do it. Not exactly first date material, however for us I suppose it does separate the good from the bad so to speak. The thoughtful from the jerks more likely. Some guys even find it kind of sexy that they are not allowed to kiss... So I turn my head and they kiss my neck. Makes me think of the old vampire myth honestly...

An old boyfriend came to visit and brushed his teeth but didn't rinse afterwards!! It didn't occur to me I needed to ask since I had explained why I needed him to brush his teeth. Just four hours after we kissed I developed the flu/sinus infection that was worse and lasted much longer than anyone else I know who got it. My ex boyfriend felt bad but interestingly didn't apologize. I have been told by many I shouldn't be mad at him. It was a simple mistake. I suppose it was however it does indicate in part why he is my ex. The flake factor since I had explained why I needed him to brush his teeth.

Beside a virulent sinus infection I got many of my usual gluten exposure symptoms. Since then I have had to be even more careful of what I eat due to damaged villi. Am finally over it completely as of today, a little over a month later!!

All of the above however does make me a little less than enthusiastic to get out there and date right now. What it does for me is tell me that I have got to be more careful... and more specific even with this. To make a joke of it I am now saying not only do I need to avoid junk foods, I also need to avoid junk dates! Despite thinking I have been selective it seems I haven't been selective enough...For now however I have decided to focus more on other things like my art, work and friends etc.

I don't know if this helps you at all but it is what I have been going through.

Bea

happygirl Collaborator

Open Original Shared Link

"Q: What triggers DH?

The simple answer is ingested gluten. But iodine (potassium iodide, iodized salt, kelp), some anti-inflammatories and stress can exacerbate the disease. An area of controversy is whether or not gluten can be absorbed through the skin. Most medical experts say no, only dietary gluten is of concern.

DH can be "exquistely sensitive" to gluten. Since the skin may not be rid of the IgA deposits for 2+ years after starting a gluten-free diet, flare-ups may continue to occur. The skin response is much slower compared to the healing of the intestinal mucosa. In particular, outbreaks of facial and scalp lesions while on otherwise adequate treatment is not uncommon."

splash Rookie

Okay that is helpful - so if it takes 2 yrs for the gluten to get out of my system (and my skin) I don't need to start thinking something wacky is going on for at least another 6 months. Somehow that actually is comforting. It still does seem crazy, though, that new blisters keep appearing every day or so for several weeks on end. I just figured a "flare up" meant that you have an incident one day, maybe triggered by stress or a bored immune systems or a bf's beer-lips or whatever it is, and then it goes away. Where are these new blisters coming from? But I take it I need to have patience.

And thanks, by the way, to Yola - glad I'm not alone. I can think of men who have been in my life who would be much more understanding that the most recent one ;-) Not that he's a jerk, I think he just couldn't wrap his lazy head around the idea that the sensitivity could be that high.

YoloGx Rookie

Hi Splash. Um, yes, guys...

Anyway about the DH--others I have advised here who do have DH have found that taking liver detox herbs really helps assuming they aren't infused in alcohol or immune stimulants. The reason being is that the liver gets overloaded downriver of the villi getting flattened when we get exposed to gluten due to undigested proteins then crossing over into the bloodstream. Thus dandelion root or milk thistle (silymarin) caps can be really helpful. Meanwhile marshmallow root caps help calm down the villi.

Eating lots of parsley and other green veggies can help too plus exercise, saunas. Mud packs on the hands and feet (bentonite or green clay mixed with a little water to make a paste with a tablespoon of apple cider vinegar) for 20 minutes at a time is excellent...

Actually apple cider vinegar with water is excellent all by itself. Helps the body detox, digest food better and get to the right ph... Bragg's is best.

I used to have all kinds of skin conditions but they have gone away for the most part except for a nagging problem with yeast overgrowth in my nethers. I used to get tiny pimples all the way down my back to my buttocks as well as in my scalp and on my necks around the nodes and the sides of my face and my chest. This was not as a teenager but rather in my twenties. This changed after I went off gluten for the most part in my thirties and was doing detoxing all the time, including things like yellow dock or Oregon grape root plus started eating a mostly cave man diet since back then what else was there to eat?? The main thing here is that not only diet helped but also the herbs... Never had it on my hands however so I don't know if it was clinical DH.

My mother does have it however. She got a recurrence starting two years ago when she was 92. She says it itches terribly. She still cheats when she can however since she is unconvinced and honestly lonely and thus a little depressed. Her first episode was as a child of four. She was treated for celiac sprue til she was twenty. Then off it since she thought she outgrew it plus she never really appreciated having to be so "different" and thus did not tell us we needed to be eating differently too...

Bea

ChemistMama Contributor

Yolo-

Happy Girl is right, there are other things which trigger the reaction. If you've been accidentally glutened, even slightly, then also have taken an anti-imflammatory like advil or naproxen, the reaction is greater.

Are you watching your iodine intake? I'm taking iodine-free multivitamins and, for awhile now, am watching my intake of shellfish and seaweed, two things rich in iodine. I was on vacation (still on gluten, before I was disgnosed) and had a cold, so I took a full dose of multi-vitamin (300 mcg iodine) also containing seaweed extracts, and I broke out something fierce. I was supposed to go on a 'gluten challenge' since my biopsies were negative and my bloodwork was incomplete, but after having 3 oz of beer I was in pain for over a week, and it's still bad. No more gluten challenges for me, I don't care if I"m officially diagnosed or not!!!

I heard about the "gluten kiss" from the Gluten Free Girl's blog, she made a comment about having her then boyfriend brush his teeth before they kissed...and when I went gluten-free I reminded my husband of this too, so how a kiss on the cheek is par for the course after he's had a beer. ;)

YoloGx Rookie
Yolo-

Happy Girl is right, there are other things which trigger the reaction. If you've been accidentally glutened, even slightly, then also have taken an anti-imflammatory like advil or naproxen, the reaction is greater.

Are you watching your iodine intake? I'm taking iodine-free multivitamins and, for awhile now, am watching my intake of shellfish and seaweed, two things rich in iodine. I was on vacation (still on gluten, before I was disgnosed) and had a cold, so I took a full dose of multi-vitamin (300 mcg iodine) also containing seaweed extracts, and I broke out something fierce. I was supposed to go on a 'gluten challenge' since my biopsies were negative and my bloodwork was incomplete, but after having 3 oz of beer I was in pain for over a week, and it's still bad. No more gluten challenges for me, I don't care if I"m officially diagnosed or not!!!

I heard about the "gluten kiss" from the Gluten Free Girl's blog, she made a comment about having her then boyfriend brush his teeth before they kissed...and when I went gluten-free I reminded my husband of this too, so how a kiss on the cheek is par for the course after he's had a beer. ;)

I don't get DH anymore if that is what I used to have (I have out and out celiac) but my mother does. I'll make sure she doesn't take ibuprofin etc.! Do you know if aspirin OK or not? My sis is having my mom take a little every day...

Bea


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  • 6 years later...
asafk Newbie

Hi. Very informative site!

wanted to share that spirulina+aloevera+water(or colloidal silver if you got any) are a great combo for the rush. in general start with aloevera add a tea spoon of spiruling and abit of water or CS. mix well and make sure its not too watery. experiment with that....

 

apply large amount all over the rush. massage it, that all the area will be green. Try do it fast because it will dry quite fast. now, you need to wait for 10 minutes for it to dry on your skin. when its dry you can saftly wear cloths over it. I found it very helpful all around  :)

Asaf

squirmingitch Veteran

Just to let you know this thread is over 6 years old. I haven't seen any of these posters on here in years & years.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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