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Twin Cities Dermatologist

MNBeth

By MNBeth
in Doctors

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MNBeth Explorer
MNBeth
Posted

Hi all,

I'm new here, not yet diagnosed, and think I have DH. I'd like to have my rash biopsied, but really don't want to waste my time with a lab where they don't have much experience with DH. (I've spent enough time with doctors who don't have much experience with celiac!)

Anyone had DH diagnosed in the Twin Cities area? North side is ideal, but I'll take what I can get!

Thanks,

Beth

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GFhopeful Rookie
GFhopeful
Posted

I know it's a bit of a drive but I would consider just driving down to Mayo Clinic. They have a Celiac expert in the GI department who can hook you up with all you will need if it is DH and make you feel confident in the diagnosis. I am on the north side (WHite Bear Lake) and it only took an hour and 15 minutes to drive down there. It's not as far as you might think and they are one of the best for diagnosis and information on Celiac and I think they would be great for a DH diagnosis as well.

MNBeth Explorer
MNBeth
Posted
  • Author
I know it's a bit of a drive but I would consider just driving down to Mayo Clinic. ...

I won't mind the drive one bit if they'll take me! I actually decided yesterday that I should try to get in there, and I've been trying to screw up my courage to make the call. I hate making phone calls, and I've heard people say that they couldn't get in without sending in biopsy results, etc., which I don't have, so that makes me all nervous. I'm such a sissy. ;)

But I'm gonna call! Might even try to talk them into seeing my son, too, while we're at it.

Thanks for the input,

Beth

p.s. We're up on the Coon Rapids/Andover border, fyi.

MNBeth Explorer
MNBeth
Posted
  • Author

Mayo is a no-go for now. The appointment secretary said they'll only consider seeing you if you've already had a positive biopsy and can send them the information. Of course, if I had a positive biopsy, why would I need to go?!

Argh. Back to the drawing board.

GFhopeful Rookie
GFhopeful
Posted

sorry to hear that - that's silly. so you have to waste your time 1st and then they'll take you, huh? that's annoying. i did have to send slides and paperwork for them to take me but i thought that was because i was questioning the diagnosis and it would be a second opinion. i didn't know they wouldn't take you otherwise. i'll keep me ears open about a demotologist but don't know one to refer you to right now.

Queener Newbie
Queener
Posted

I don't get it. If you have Celiac Disease, I assume you are gluten-free. If you are truly gluten-free, I don't see why you would have a rash - if it is in fact DH. The treatment for DH is gluten-free diet.......

I had only the DH symptoms and read enough to know that if I had DH, I was Celiac. I contacted Dr. Joseph Murray at Mayo to see if he would see me and he did - his secretary was the one who set up my appt and biopsy with the dermatoligist (Dr. Dragge).

MNBeth Explorer
MNBeth
Posted
  • Author

I am not a diagnosed celiac. I am hoping to *get* diagnosed, and am tired of wasting my time w/doctors who aren't up to date on celiac issues, so I was hoping someone could recommend a dermatologist who was clearly well-versed in DH.

I've since made an appointment with a dermatology office that seems informed about this condition. I don't know what the deal is with the celiac clinic at Mayo. It almost seems like it just depends on who answers the phone when you call. Or maybe you just need the right #. I called the appointment desk, not having access to Dr.Murray directly.

Anyway, I think I'll just go w/the local dermatologist and see if I can get my diagnosis that way. I'll be really, really surprised if that isn't what it is.

I was gluten-free for only three weeks; when the pathologist at the dermatology office didn't feel confident that being gluten-free wouldn't affect the outcome of my biopsy, I decided to go back to gluten for the remaining three weeks before the test. After that, I'm pretty sure I'm done with gluten for good. Even then, from what I've read, it may well take a long time for the rash to clear up.

I'm glad you got in at Mayo, though; it's so nice to be dealing with doctors who know this condition!

I don't get it. If you have Celiac Disease, I assume you are gluten-free. If you are truly gluten-free, I don't see why you would have a rash - if it is in fact DH. The treatment for DH is gluten-free diet.......

I had only the DH symptoms and read enough to know that if I had DH, I was Celiac. I contacted Dr. Joseph Murray at Mayo to see if he would see me and he did - his secretary was the one who set up my appt and biopsy with the dermatoligist (Dr. Dragge).

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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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