Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dh- Is A Biopsy A Must? & Other ?'s


Alternative mama

Recommended Posts

Alternative mama Apprentice

I have recently been officially diagnosed with celiac disease (after 8 yrs of searching for answers ) and have alot of ?'s. I have been gluten-free for 3-4yr but am now finding out I have gotten into Gluten inadvertently over that time. I'm now breaking out in a blistery itchy rash and am pretty sure it's DH. I'm working on finding all the names gluten goes by and getting rid of CC so do I HAVE to get a biopsy for the DH? Does DH cause other things I should know about or can I just assume this rash will go away once I get my diet even more cleaned up? I read somewhere that DH increases your chance of lymphoma. Would this just be the untreated celiac disease that increases your lymphoma rate or ?????

After 8 yrs of being let down by conventional medicine and dr.s I stay away from them as much as possible. I don't plan on getting my DH treated conventionally unless I find a specific medical reason to.

Has anyone tried any natural therapies to treat the itchiness during a breakout? Like maybe tea-tree oil or Himalayans sea salt baths??

I'm just looking for some natural options.

Any help would be greatly appreciated!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



YoloGx Rookie
I have recently been officially diagnosed with celiac disease (after 8 yrs of searching for answers ) and have alot of ?'s. I have been gluten-free for 3-4yr but am now finding out I have gotten into Gluten inadvertently over that time. I'm now breaking out in a blistery itchy rash and am pretty sure it's DH. I'm working on finding all the names gluten goes by and getting rid of CC so do I HAVE to get a biopsy for the DH? Does DH cause other things I should know about or can I just assume this rash will go away once I get my diet even more cleaned up? I read somewhere that DH increases your chance of lymphoma. Would this just be the untreated celiac disease that increases your lymphoma rate or ?????

After 8 yrs of being let down by conventional medicine and dr.s I stay away from them as much as possible. I don't plan on getting my DH treated conventionally unless I find a specific medical reason to.

Has anyone tried any natural therapies to treat the itchiness during a breakout? Like maybe tea-tree oil or Himalayans sea salt baths??

I'm just looking for some natural options.

Any help would be greatly appreciated!

Hi Alternative Mama!

I am into natural remedies as well. Its good to see someone else here who is too. I don't believe the general thing about nothing but diet helping. Diet is extremely powerful and it is essential to remove all gluten if you have DH and/or celiac. However I have found there are herbs that do help.

I too got into a non gluten diet years ago without knowing I had DH or celiac. I also had what were becoming severe problems with my kidneys and nervous system (which also affected my heart and brain). So over the years I came up with some remedies that are even better now that I am discovering through this site about how important it is to be strict at avoiding gluten even from hidden sources like old cutting boards etc.

And I agree--for me doing a gluten challenge for a long enough time to then get the standard test results would be too harmful for my health at this time as well as pointless. I have confirmed to myself through trial and error over the years and I know I am gluten intolerant. All I have to do is get exposed and very quickly I get my old DH back as well as a host of other symptoms, including problems with my kidneys. I just don't want to go there as you might well imagine! And yes the doctors haven't helped much at all, even the alternatives ones. Though I guess that is starting to change as they begin to acknowledge these conditions actually exist. However it is hard to take having had so many think one is a bit crazy along to way. Not to say we aren't its just that its hard to be denied ones truths and not respected for one's struggles.

As I have suggested elsewhere, I have read that taking vitamin B complex is essential for most of us since people with DH and/or celiac usually can't make or absorb B vitamins very well. I certainly have found that to be true for myself in spades!!

If you can handle yeast products, I suggest you get one that has brewers yeast in it. If not, however, like me you might need to take Co-enzyme B vitamins, best taken away from food. I like the caps rather than the sublingual ones with sorbitol though I think everyone is different. The B vitamins can be very important for your skin as well as nervous system and better micro-digestion. Vitamin D and minerals of course are very important too. I find for my skin etc. cod liver oil is best though I know not everyone can handle it.

I don't need to take HCL though many do. However I do take papain/bromelain enzymes with my food so I have less tendency to have inflamed skin as well as less inflammation in my gut and joints. I have hypermobile joints which no doubt willhelp keep me young, however they are easily stressed by gluten; I think of it now as being like Superman's kryptonite.

Besides no gluten, I have found eating a lot of vegetables and a modicum of meat is important as well as avoiding additives where possible. Ditto with sugar. Try stevia for sweetener instead. Potatoes are just fine if they are organic I have found. I also like teff, amaranth and quinoa as grains for pancakes. Fruit is nice but don't overdo. I personally like nonfat organic yogurt--must be related to all those northern nomadic peoples.

In fact I just read most people with DH and celiac apparently usually come from European Hunter Gatherer peoples who couldn't quite swing the shift to agricultural grains. Our forebears survived anyway since they had the advantage of being more resistant to parasites and bacterial infections than their more civilized cousins despite no doubt being miserable and not knowing quite why when they ate all those delectable breads.... No doubt many of the Shamans had this condition since it easily creates altered states! And of course all those crazy Vikings.

There are a number of herbs I could suggest and have elsewhere. I'll just list them here: for detox and better elimination: dandelion, oregon grape root or yellow dock root and burdock root (especially powerful for the skin); for soothing internal inflammation (which can also affect strange to say the skin): marshmallow root, slippery elm and bromelain/papain capsules; for helping against candida: pao de arco and barberry (this last very powerful--a little goes a long ways--and candida overgrowth can affect the skin).

Generally 1 heaped tablespoon of each herb per quart of water, boil 15 to 30 minutes. Can add licorish root for taste as well as to strengthen adrenals. Just be careful when boiling since it tends to make the mixture froth. Don't use if have high blood pressure--though I have found most celiac and DH have low blood pressure. Lavendar is nice too for soothing nervous system as is skullcap. Somehow the nerves and itchy skin seem closely related.

Slathering on comfrey root salve and/or aloe vera on the skin can help--and even licorice root powder as well as neem powder (though its dark and messy--if it itches maybe you don't care). I hear that chamomile and calendula can help too. Some of the homeopathic skin preparations work for people.

Hope this helps. I'd love to have us create a natural alternative line of discussion.

---Yolo

Alternative mama Apprentice

Yolo,

Thank you for that info!

I would love to see an alternative thread :)

I too have had lots of probs with my kidneys. I know I don't absorb my B vits well - and D too. I have been taking a multi vit but my nutritionist musles tested me with it and said my body doesn't like it. I'm thinking there's something in it ( no Gluten but something else). I also take digestive enzymes with every meal. I have also started replacing my coffee with pau de arco tea, though I have not tried adding the Barbarry and some of the other herbs. I know my gut is really a mess so I can't do alot of detoxing internally until I can strengthen it and fix some of the linging problems. But I have been doing alot of external detoxing through bentointe clay , baking soda & himaylan sea salt baths.

I have had alot of yeast problems so I'm working on that. I'm a sugar addick :( but I'm working on it. I do use stevia and xylitol.

I actually have been slowly moving toward a raw diet b/c I'm just obviously having too many problems and am starting to not trust ANY packaged foods. I'm still trying to learn all the "ingredients" to look out for but every day find new ones to watch. Like I had no idea that Vit E could be derived from Wheat! UG!

I'm not sure where yet, but I know I'm getting into gluten b/c of how I feel and this DH garbage seems to be getting worse :(

I have a question.....do the DH scars ever go away?? I have one or 2 that seem to have scarred and I'm really hoping they will eventually fade??? Anything in paticular that will work for the scarring? (other than not itching....that just isn't going to happen LOL!)

I don't know if you are a registered user on ebay but I sell on there (organic clothing) and I also lead an alternative health group . We currently have over 750 members. We have some very very knowledgable folks. Just not tons of celiacs so that's the reason I came here- looking for some new answers and help.

If you're interested in that group here is the info

Open Original Shared Link

I'm alllllways looking for any info on alternative health remedies for celiacs. Between my gut, kidneys, bones, anemia, parathyroid and skin my poor body could use some serious help! LOL!

Thanks!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,415
    • Most Online (within 30 mins)
      7,748

    KittyKatJill
    Newest Member
    KittyKatJill
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.