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Itching


tinstar

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tinstar Newbie

Hi

I recently have gotten very sick. I have a rash all over my body that the Dr thought was scabies. (I work with the nursing homes) they took skin biopsy and it is not. They do not have any idea about what it could be so I decided to research it my self. About 3 yrs ago I thought that maybe I had an allergy but they came back with primary billary chorsis. I also have Graves and Hashimotos for years since I was in my 20's. I am now 58. I cannot stand this itching. It started after a diet I have been on. It is lots of soy and protien and I get a shot of B12+ some other stuff every week. The itching started on the bottom of my feet and palms of my hands. I also could not breath standing up I felt like I had to bend over or sit down then I felt better. My body felt shaky inside but my Dr gave me all kinds of tests and said the heart and lungs and 02 stats were just fine. I was looking at rashes on the internet and saw this DH and it looks like mine. They wanted to send me to a dermatoligst but I do not have insurance that will pay. Any ideas for me? I should ask her for a blood test but what do I call it? Thanks for help

  • 2 weeks later...

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ang1e0251 Contributor

if you think it's DH, it can be biopsied for a celiac DX. Check out the article (accessed from the homepage) that outlines the proper way to do the test. Take your pictures into the dr with you so you can show why you believe it's DH. A picture is worth a thousand words! I think I would approach my family dr first as you may need a referral.

Good luck!

SGWhiskers Collaborator

I don't know much about DH. I do know that Primary Billiary Cirrosis is highly associated with Celiac. Open Original Shared Link You need to have your doc test your blood for Celiac, especially since you think you have DH. I hope the Cirrosis is progressing slowly for you.

Serologic Tests

EMA (Immunoglobulin A anti-endomysium antibodies)

AGA (IgA anti-gliadin antibodies)

AGG (IgG anti-gliadin antibodies)

tTGA (IgA anti-tissue transglutaminase)

Total IGA should also be tested because 2-3% of Celiacs are negative for IGA, and it can cause false negatives.

Take care.

ZsaZsa Newbie

I have been Hightly allergic to Soy (Any form of soy)......for over a decade!.......I discovered the soy allergy long before I even figured out the Celiac problem......AND the Soy CAUSED SEVERE ITCHING!!! Soy is in practically everything in one form or another.....so, If it's the culprit......you'll have to be even more vigilant in trying to avoid not only Gluten.....but soy forms also! I had the Dh rash for years on my legs......and After deleting the soy, the rash started going away, layer by layer..........then ONLY after deleting Gluten from my diet........the rash I'd had for years, and years......gradually dissapated. Anytime I come in contact with soy, my head fingers and face will severely itch and become inflamed! ........Just my 2 cents worth.

  • 3 weeks later...
mrmachinist Newbie

I would agree with the recomendation to get away from soy, the media "kool-aid" drinkers try to tell you soy is a miracle food, but the truth is it is one of the worst things you can eat.

mushroom Proficient

Add me to the list of soy itchers. It drove me cracy.

MyMississippi Enthusiast

A diet with "lots of soy" is not a healthy diet. In fact, " lots of " anything tends to make us sick. We need variety and MODERATION in our diets---- mostly vegs and lean protein (not from soy).

My two cents worth.


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    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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