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Pictures Of My Rash


Sam81

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glutengirl42 Rookie

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?


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ravenwoodglass Mentor

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

Skylark Collaborator

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??

You are NOT a head case. I really hope the diet helps you.

glutengirl42 Rookie

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

WoW... it's so frustrating that the label laws don't require full disclosure of ingredients. Very good to know. Continue to keep me informed :)

Sam81 Apprentice

And you aren't a head case.

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to wheat... All because I stamped my feet. They now think I'm mental...

pricklypear1971 Community Regular

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to

wheat... All because I stamped my feet. They now think I'm mental...

I know this is incredibly frustrating.

Good news is they are looking at Lupus, which is on the autoimmune spectrum. Any chance they are sending you to a rheumatologist? Good chance a Rheumy will listen to you about Celiac and order the tests.

And that doc must be on the pipe because chronic hives can do all sorts of things, including staying around for more than 24 hours.... Open Original Shared Link

This is a side note - I used to be obsessed with classifying my rash and upset because my dermatologist wouldn't give it a name - he said it was "caused by an autoimmune response" - which quite frankly was the BEST thing he could have said because I started looking for the autoimmune condition.

I obsessed over it being dermatitis, hives, psoriasis....he said it didn't matter because the goal was to relieve the

symptoms and NOTHING HE DID RELIEVED THE SYMPTOMS (furthermore Tge treatments were harming my adrenals). So, I had to find the cause. Perhaps having them look into Lupus is the first step to finding the cause for you.

Good luck and keep on going.

lub2bmom Apprentice

have you tried going gluten free to see if it helps?


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Sam81 Apprentice

have you tried going gluten free to see if it helps?

Everytime I plan and attempt it I get a glimmer of hope that dr's may test for it so I don't start it! I haven't a clue were to buy stuff in UK so it's taking a lot of time planning - I don't want to be eating salad forever. I'm also vegetarian so that's adds complications in terms of protein or lack of it as all vege stuff is loaded with gluten and wheat. I'm being referred to an immunologist for akllergy to wheat. I'm going to ask for a rhematologist - even if i play on the behcets angle... ...been a while since they checked me out anyway...

I just feel like bechets and lupos are not real - you can only manage them - not cure them... Does that make sense to anyone?

I certainly dont mean to offend anyone by that statement - My family can't accept them. They laughed when I told them.

Natally Newbie

I would say that you are like many of us who suffer from DH--you simply CANNOT tolerate iodine. Now that you've seen the result of iodine ingestion, you'll need to try everything you can to eliminate any and all iodine in your diet. This may be why the blisters have not disappeared after six weeks of being gluten free. Don't eat seafood, iodized salt, salty foods, processed foods, or dairy (unless it's organic). For me, NO healing began without eliminating iodine...and then the healing was fast.

By the way, others on this forum have mentioned that Dapsone did not resolve their DH.

Thank you for the information about iodine. I am new to this site and suspect I have a problem with gluten and I also suspect with dairy and yeast as well. So much information I need to give myself some time to take it all in.

  • 1 year later...
Mefellows Newbie

Quick background to this is I was diagnosed with bechets at 16 at put on dapsone tablets - 50-100mg daily. Left to manage it on my own. I stopped taking it 2 years ago when I was pregnant and havent taken it since due to breastfeeding. Slowly symptoms of my body/stomach not liking something have come along and I also get this rash when I eat certain things. Im tired, irritable, constant stomach aches/pain, migraines, urgency for toilet and messy when I go, dizziness and bad memory. Dr's so far have put most of these symptoms down to stress and having children. But I feel different, my head is always foggy and I hate this anger that comes from no where. Rash has been treated over the years as Psoriasis, impetigo and one dr said it was because i must of left mess on me when I'd been to the toilet! Dr has done "celiac Blood test" which he says is negative but refuses to give me the actual result. From what I can tell he has only tested the "Anti-tissue Transglutonase" level? So here are some pictures of the rash I get on my face (purple marks that can be itchy but usually painfull and take months to go), bottom - (intensely itchy and burning - note the scratch marks!) and legs - these look more like hives I think. I havent included all the pictures of the rash on my beind as it's very embarassing - just imagine the last 2 pictures all over!! Everything else seems mild at the moment.

Any opinions, thoughts etc are welcome. Ive just had a colonoscopy (as Dr wants to do the cheapest procedure first) and it was clear. I have a dermatology app in 3 weeks and am seeing stomach people for first time in October.

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OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?
ciamarie Rookie

OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?

For some of us, yes. I also had to cut out MSG and all the msg 'alias' ingredients I didn't know about, as well as sulfites. Some folks on here had to go with low salicylates, so we're all a bit different. If or when you go low iodine, don't cut it out for more than maybe a couple of months? I'm not an expert... but it is a necessary mineral. As we heal, our body can process it better too.

I'd start with the gluten-free and possibly low iodine, then keep a food diary to see what sorts of other things may cause an issue for you. Then you can come back here with questions or for some research. Hope you stop itching soon!

Edited to add: If you want a diagnosis, don't start a gluten-free diet until you get a DH biopsy done or blood tests done or whatever testing your doctor agrees to do. Sorry, I should have put that up front.

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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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