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New Diagnosis: Dh Without Celiacs, After Being Diagnosed With Both For 20 Years

33 in Ca Celiacs and DH

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33 in Ca Celiacs and DH Rookie
33 in Ca Celiacs and DH
Posted

Does anyone else have DH and negative for Celiacs? I was diagnosed With Celiacs and DH for the last 20 years.. Although I do have the bloating, constipation, achy joints, iron deficient.. I am not/have not been gluten-free since 2000 (for 6 months).

A new Dr recently suggested that I have the blood work to see if I truly do have Celiacs, and to our suprise, the test came back negative.

I do, however, absolutely have DH. I take 100 mg of Dapsone daily and if I miss a dose by just a few hours, I get blisters on my face, shoulders and under my butt. :(

I am having a gastro-intestinal biopsy Monday.

Does anyone else have DH but not Celiacs? My Dr said it is possible but that goes against everything any other Dr. Has told me?!?!

Please help clarify... Deeply confused!

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Jestgar Rising Star
Jestgar
Posted

DH IS a diagnoses of celiac disease. Your doctor is misinformed.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I have Celiac and my blood test was negative. My diagnoses was done via biopsy, just as yours was diagnosed by your DH. The thought that you can eat gluten is very harmful! :o

sreese68 Enthusiast
sreese68
Posted

Unfortunately, the false negative rate for bloodwork is much higher than what a lot of doctors think. My own GI said it had an accuracy rate of 98%! (which is quite wrong! And he was wrong about other details of celiac.) Good thing my neurologist said that he sees false negatives all the time and to pursue things further. Anyway, I had negative bloodwork, but I definitely have celiacs.

eatmeat4good Enthusiast
eatmeat4good
Posted

Peter Green wrote Celiac A Hidden Epidemic and in it he says DH patients often test negative for Celiac, however they are often the most sensitive to cross contamination and have a higher incidence of lymphomas and other cancers secondary to Celiac. I wouldn't believe your Dr. on that one. A negative blood test does not mean you don't have Celiac. A diagnosis of DH DOES mean that you have Celiac.

Roda Rising Star
Roda
Posted

I agree with the other posters. If you have a diagnosis of DH then it is a diagnosis of celiac.

JoshB Apprentice
JoshB
Posted

"Accurate" isn't very well defined. Let's say the "blood test" in this case maybe EMA-IgG is very specific but not very sensitive. If it says you have celiac then you have it. Unfortunately there's a 10% or so chance that if you have celiac disease it might not tell you about it.

In any case, it's all the same in the end, right? You can't eat gluten. What's the point in arguing with your doc? Is there something riding on the celiac disease diagnosis over the DH diagnosis?

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kareng Grand Master
kareng
Posted

Have you thought about eating gluten-free to clear the DH up? It usually gets rid of the DH. No reason to take that medicine. Seems irresponsible of the docs to keep prescribing medication all these years.

33 in Ca Celiacs and DH Rookie
33 in Ca Celiacs and DH
Posted
  • Author

Thank you for all of the insight.. I was hopeful that I didn't have Celiacs as I have never been very good about sticking to the diet and more importantly, it seems there is so much more at risk with Celiacs (specifically Cancer, miscarriages (I've had 1) and/or fertility). I am not symptomatic other than bloated belly/gas and constipation. I do get blisters within 30 minutes of not taking Dapsone at my normal time... So it seems it's a no- brainer that I have DH.

I was thinking (probably not smart), that there was a possibility that I wouldn't have to watch what I eat as long as I continue to take the dapsone.

On another note, does anyone else take Dapsone for DH? I haven't found much research on the risk/harm that Dapsone causes after long periods of time. Any insight on this would be great!

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  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • 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!
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