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Can Dh Come And Go?


Terri-Anne

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Terri-Anne Apprentice

Mydaughter often breaks out in a bumpy "rash" on the back of her neck in the hairline. This rash comes and goes. It could be absent for weeks, then suddenly appear, staying for 3 or 4 days, then disappear as suddenly as it came. The rash on her neck does itch. To me it looks more like small pus filled pimples, than little blisters. The contents appear whitish, not clear.

She also wears "Good night Pull ups" at bedtime, and also has a nasty bumpy "rash" that comes and goes on her buttocks. Again, it could appear one day, last for a few days, and then recede for a few days to weeks before reappearing. My sister suggested maybe this was a sort of heat rash, related to wearing the pull-ups and being sweaty in them, but the rash is only on her buttocks, not in the front areas at all. Daughter says the bumps on her behind hurt rather than itch.

Third symptom that has me wondering, is cracks near the corner of her mouth. I know that true "angular cheilitis" which can be related to celiac is right in the corner of the mouth where the lips meet. Daughter's crack(s) are very near the corner, but not exactly at the junction. These cracks appear more rarely than the rashes, like maybe only once every other month, but she is the only one of my children who gets them. She can feel them coming on, as she tells me when one is starting. She thinks they are cold sores, like her older sister gets, but I know they are not. They are very different from the blistering, crusting herpes cold sore my oldest daughter is prone to.

She is currently on a mainstream gluten filled diet! I hate to appear alarmist and bark up the wrong tree completely, especially when I know how difficult it is to convince physicians that celiac is real and present. If I am going to have to get into "bull dog" mode in pursuing a diagnosis, I want to have my facts straight first, so that my confidence won't be shaken by a patronizing doctor.

SOooooo do her symptoms sound like Dermatitis Herpetiformis/Celiac disease, or should I be looking elsewhere for a reason for her "rashes"?


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lovegrov Collaborator

All I do is comment from my own experience. It does not sound like the DH I had.

richard

KaitiUSA Enthusiast

When I have accidentally have gluten I get itchy on my elbows and around my knees. I will get bumps there and it will be itchy for a while and then the bumps will go away. My diet normally controls it. I don't get it as much now. Before I was diagnosed it would happen very frequently. This may not happen in everyone this was just my personal experience.

Good luck :D

lbsteenwyk Explorer

My 3 yo daughter has had a rash on her bottom that sounds similar to your child's. The Ped said it was eczema and gave her elidel (sp?) cream. My understanding is that celiac kids are also more prone to eczema. She also had a dry bumpy itchy rash all over her body (really I couldn't see it, but could feel it). The elidel did seem to help; but what I found to be most helpful was to slather her with Eucerin every night before bed. She's really improved and rarely scratches anymore. I don't know if her rash was related to her celiac disease or not.

Terri-Anne Apprentice
;) Thanks for your responses!
cdford Contributor

Hi! Your daughter's rash around the neck and hairline seem exactly like mine and my daughter's.

That is the first place I break out. If your daughter thinks about it, she may realize that she senses these coming on as well, though that area is not as sensitive. DH can come in different places on different people. Mine starts in my hairline, then my chin and ears, then shows up on my shoulders, arms, and backside. Those on my backside are tender like boils. Not sure why they feel different. I can sense the ones on my face before they ever get that light red look then break out into the pus pocket things. My daughter gets them in her hairline, but never in her ears, always on her lower legs first. She rarely gets them around her hips and rear. In both our cases, the bumps were first diagnosed as other things like eczema. It was not until the celiac disease diagnosis that it was determined to be DH.

The only way to be sure is to test them, but you can probably get a pretty good idea by keeping a food diary.

  • 1 month later...
Thangalin Newbie

hey,

noticed that you mentioned your daughter gets icky cold sores. you've probably done some research on the topic, but in case you haven't, there are some tips and details at:

Open Original Shared Link

ciao!

N


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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. 
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      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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