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DutchGirl

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DutchGirl Apprentice

Sorry, did you think you were chatting with someone who is/was sane? B)

With time comes experience. I have not brought any gluten into the house, except pet food. (fish food) It is handled like poison.

My daughter was diagnosed with Eosinophilic Esophagitus (related to Celiac, but an utter mystery). One of the common theories to the mystery is to blame a too clean environment. (don't get all freaked out and crazy but vaccines are a possible suspect for not allowing kids to get sick with "childhood viruses")

So I have become more relaxed about cleaning. Maybe too relaxed. <_<

Wow, how scary about your daughter! I hate the whole vaccine thing, I feel like I'm scared to vaccinate and I'm scared not to. The H1N1 Vaccine killed more people than the H1N1 virus itself.


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DutchGirl Apprentice

One of the best books to read is Celiac Disease: A Hidden Epidemic by Dr. Peter Green. He is one the leading researchers/physicians specializing in Celiac Disease and his advice is spot on. It's also a great tutorial on how this disease works and if you don't learn that, you'll never get the diet right. I highly recommend it.

One of the things talked about in this book is DH and how skin contact with gluten containing foods or products will not cause a DH outbreak. DH is the skin version of Celiac and works the same.....you have to ingest gluten for an outbreak to occur. However, most people with DH have very sensitive skin to begin with and other ingredients in products can irritate your skin or you may have an additional skin allergy to wheat or another ingredient in products. Not every outbreak or reaction is gluten based. You can choose to use gluten-free products if that is more comfortable for you but it may not be entirely necessary all of the time.

I could see where it might be easier to just stick to all gluten-free products if you do have DH.

Read the book....it's very interesting and you'll learn a lot of useful information.

I will definitely pick up the book!! Thank you for the recommendation! I have DH on my scalp and I worry that the gluten will do harm by entering in through the sores?! I also have a itchy gross rash in and between my eyebrows but since I've stopped wearing my makeup that contains gluten, it's getting better. So maybe I have an allergy as well as celiac.

DutchGirl Apprentice

I almost died when I had chickenpox. I was three years old but I remember it as if it were yesterday. So weak, such a high fever, and so much pain. Plus, those who have had chickenpox are at much greater risk of shingles in adulthood.

 

I agree that kids are overvaccinated these days, but chickenpox is one that I think is good. Measles too. That's another one that has killed quite a few kids.

That's so scary! Chickenpox seems so harmless until you hear stories like these! My step Mom had Mumps as a child and it left her deaf in one ear.

mushroom Proficient

That's so scary! Chickenpox seems so harmless until you hear stories like these! My step Mom had Mumps as a child and it left her deaf in one ear.

My sister and I had measles together.  I missed two months my first year in high school.  My sister was hilarious - she had delirium and we used to have the wildest conversations :lol:  - couldn't ever talk to her about them later though :rolleyes:

Gemini Experienced

I will definitely pick up the book!! Thank you for the recommendation! I have DH on my scalp and I worry that the gluten will do harm by entering in through the sores?! I also have a itchy gross rash in and between my eyebrows but since I've stopped wearing my makeup that contains gluten, it's getting better. So maybe I have an allergy as well as celiac.

DH takes a long time to go away, unfortunately. It is explained in the book, better than I can do. I think if your scalp and skin are that irritated, it might be a good idea to use a very gentle shampoo and cleanser that is gluten-free, something without perfumes/scent.  Keep it simple until the DH is under control. Sorry to hear you are having such a hard time but with patience, you will get this under control.

Gemini Experienced

I almost died when I had chickenpox. I was three years old but I remember it as if it were yesterday. So weak, such a high fever, and so much pain. Plus, those who have had chickenpox are at much greater risk of shingles in adulthood.

 

I agree that kids are overvaccinated these days, but chickenpox is one that I think is good. Measles too. That's another one that has killed quite a few kids.

         I think the number of kids that die from chicken pox today is pretty low. That's extremely rare and we have better medicine to help if things get out of control.

 

I had them and it was just another childhood illness.  I also had shingles once but I knew what it was, went immediately to the walk in clinic and was put on anti-virals right away and it was not that bad.  Nearly dying of Celiac was far worse.  Not everyone develops shingles either...that medical scare is overblown, like everything else.  Kids get way too many vaccines today....they need to pick and chose the ones that apply to each situation.  It just seems odd that with all the vaccines, kids are sicker today than when I was young.  No one had food allergies when I was in school and diabetes was rare.  It makes you wonder if the assault on a kids immune system today does something bad in the long run.

mommida Enthusiast

From the case files of some of the chickenpox deaths, its seems there was extreme OVERmedication.  The patient was given more drugs that need to processed by the liver, when the liver is needed to process the virus.  So the patient "died from chickenpox"  but IMO the patient died because of liver failure.  My opinion was partly formed from Reye's syndrome.


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mommida Enthusiast

Eosinophilic Esophagitus is the modern medical mystery.  (I am a bit bitter paying for specialist that can only say "just don't know".  *Something* just triggers the production of eosinophils to be produced and the nasty white blood cells just damage everything.  Fortunately we have narrowed down some of the food triggers (have suspects for the airborne triggers as there is a seasonal "flare".)  Gluten is the "trigger" for some patients, so we have quite a few EE patients here.  The connection was finally noticed by the medical community and newly diagnosed EE patients should be screened for Celiac.

bartfull Rising Star

I think one of the reasons kids get sick more often today is that they don't play in the dirt. They are using anti-bacterial soaps. They are living in a more sterile environment and their immune systems don't get to build up strength. I know that is why you believe we should let our kids get these childhood diseases, but I guess it depends on the individual child. I was born sick and almost died several times. I had pneumonia several times as an infant and more as a child. (I even had it a few times when I was in my 20's - one time so bad that I needed to be hospitalized.) Mom said measles almost killed me too but I don't remember measles. I had croup, I got bronchitis at least twice each winter, I had scarlet fever, I was a mess!

 

I grew up to be pretty healthy though except for celiac and a touch of asthma. :)

  • 2 years later...
Rosalind Newbie

where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.

cyclinglady Grand Master
1 hour ago, Rosalind said:

where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.

Most toiletry products are fine even if they have wheat/gluten in them.  The main issue is not to ingest them!  Many folks with celiac disease are careful with shampoo, conditioner, soap, lotion, lipstick, lip gloss, hair products,  and sunscreen because they could be accidentally swallowed (if you chew on your nails, etc.).  

I have used Crystal Deodorant for 20 years now.  It can last for years!  Seriously!  It is pretty effective but not as effective for a teenager.   My entire family uses it, but my teen uses regular antiperspirant too.  You can find it at Whole Foods, Sprouts, healthfood stores, and even a "roll" on version at CVS.  Of course, Amazon carries it too and the price is comparable to the stores.   I found some mini travel versions at Marshalls (but that is hit or miss).  I like the solid crystal option the best. 

I really like Gabriel Lipstick found at Sprouts.  I buy it on sale.  It is certified gluten-free, so I never have to worry!  I hear that Red Apple (sold online) is very good too and is certified.  

I hope this helps!  

kareng Grand Master
1 hour ago, Rosalind said:

where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.

I never worry about deodorant.  The only things you really need to worry about are things that might get in your mouth.  I get shampoo in my mouth so I read the ingredients.  They will say if they have wheat germ oil in them. 

 

Open Original Shared Link

 

"Gluten must be ingested to be cause for concern for someone with celiac disease.

We still recommend those with celiac disease avoid contact with gluten, especially with products that have the potential to be ingested. Small amounts of gluten can be found in many cosmetics, lotions and shampoos. Avoid product ingredients that literally say “wheat,” “rye,” “malt” or “barley.”  "

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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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    • tiffanygosci
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