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sbatson1958

DH? Maybe...Questions...Rash is driving me nuts...

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Hi All,

I just joined here hoping to get some answers and/or pointers in the right direction. My youngest daughter, late twenties is confirmed Celiac. My Oldest has pretty severe Gluten Sensitivity, she's also late twenties. My youngest gets severe stomach issues with the slightest exposure to gluten including cross contamination. My Oldest also has stomach issues but has had a rash that took a year of extreme avoidance of anything Gluten to clear up. I had a rash the looks like photos I've seen of DH and my oldest said it looked like the famous "Gluten Rash". I had a biopsy done, results did not indicate DH. The Dr just indicated a non-specific type of Allergic reaction. 

Two things.

1) In my mind, regardless of if the rash is DH, it would seem to me that given that Gluten Sensitivity and Celiac can cause all sorts of health problems, it seems reasonable to me that my Rash could still be a result caused by gluten sensitivity even if not specifically DH. I don't have any stomach issues or other symptoms of Celiac or Gluten Sensitivity that I'm aware of. And to be honest, when I eat products that are certified Gluten Free to replace similar foods that would normal be wheat based, I get gassy and/or bloated at times. Any comments on this?

2) I'm about ready to go out of my mind with this Rash. I'm still learning, following advice of my celiac daughter to completely eliminate Gluten from my diet. The rash started to clear up and then returned and appearing in new areas. I have been avoiding Gluten as best I can for months. I'm also trying to avoid any personal care, laundry soaps, etc. that would contain Gluten. When I go out to eat (which I've started to do much less), I try to avoid gluten as best I can. I suppose I could be getting some cross contamination. 

As far as getting this rash under control and getting some relief, I'd read that Dapsone has been used to get DH under control for server cases, but that it takes a long course as well as continuing to remain gluten free. My Dr says that Dapsone is a very harsh Antibiotic and has lots of side effects and does not recommend it.  I'm going to be visiting my doctor again to see what can be done about the rash. I intend to stay gluten free, but I've got to find something that will help and also explore the possibility that the rash is not necessarily related to gluten.

I've tried several different types of lotions on it and get anywhere from no effect to the rash gets worse. Afraid to put anything on it at this point but the skin gets dry and itchy. As far as tests, I'm not going to go through hassle and expense of getting tested for Celiac or Gluten Sensitivity since the only treatment for that really is to get off the gluten which I'm already doing. So to get to the bottom line here, does anyone have recommendations of lotions or other treatments for the "Gluten Rash" (assuming it's what I even have) that if nothing else can help ease the itching and hopefully shrink it up and/or stop the spreading? And yes, I know that some lotions have gluten in them so I'm avoiding those too. 

Help! :o

 

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sbatson1958,

See this post that talks about someone else who has had similar problems with a DH like rash.

I think it will answer most of your questions.

Where it occurs can be a clue.  DH rashes and/or rashes that occur when someone is low in Niacin causing hive like reactions in the skin usually occur quoting Knitty Kitty from the link discussion thread "The rash appears on the skin where it is exposed to sunlight" and (my words) where clothes bind or where ie the skin is experiencing a stressor.

I think this link/thread will explain most questions you might have.

I hope this is helpful.

Good luck on your journey.

Posterboy,

 

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1 hour ago, Posterboy said:

sbatson1958,

See this post that talks about someone else who has had similar problems with a DH like rash.

I think it will answer most of your questions.

Where it occurs can be a clue.  DH rashes and/or rashes that occur when someone is low in Niacin causing hive like reactions in the skin usually occur quoting Knitty Kitty from the link discussion thread "The rash appears on the skin where it is exposed to sunlight" and (my words) where clothes bind or where ie the skin is experiencing a stressor.

I think this link/thread will explain most questions you might have.

I hope this is helpful.

Good luck on your journey.

Posterboy,

 

The rash started on my Leg about a year ago. I've gone though a number of different treatments recommended by my doctor and also had some success with avoiding Gluten but that isn't helping a lot right now. It's appearing on different parts of my body right now. Lower right leg is where it's started, it's pretty big area there. Then some small patches on both legs on my thighs. I have patch on my right wrist and on my right hand. Also my chest is getting itchy and some small bumps popping up there. One very small area near my right eye. The worse parts get itchy, flare up and sometimes blister, then get tender/slightly painful for a while. All of these some to come and go.

 

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Are you avoiding iodine? Both in supplements and food? Iodine can keep the antibodies active in the skin.

Also the words 'as best I can' really can't be part of a celiacs vocabulary. Every time you get glutened the antibodies are going to flare and you will have an outbreak. You have to be strict with the diet. This is also vital for your children that have celiac. Read the Newbie thread at the top of the Coping section and ask any more questions you need to ask. Clearing the antibodies out of the skin takes time but it can be done.

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11 hours ago, emma6 said:

other than the dh biopsy, have you been tested for celiac? it is possible to have it without any classic symptoms

My Doctor did a blood test and said it was negative but that it's also often inaccurate. I am meeting with my doctor again this week, but I don't plan to pursue further Celiac testing since the treatment will go back to living Gluten Free. I see no reason to continue expensive, time consuming testing along with other test related issues for them to confirm and say eliminate all gluten. Celiac or not, I'm going to live like I am since I have so many blood relatives having gluten issues.

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8 hours ago, ravenwoodglass said:

Are you avoiding iodine? Both in supplements and food? Iodine can keep the antibodies active in the skin.

Also the words 'as best I can' really can't be part of a celiacs vocabulary. Every time you get glutened the antibodies are going to flare and you will have an outbreak. You have to be strict with the diet. This is also vital for your children that have celiac. Read the Newbie thread at the top of the Coping section and ask any more questions you need to ask. Clearing the antibodies out of the skin takes time but it can be done.

Until I read info here, I didn't know that Iodine could be an issue...I will look at my supplements and food and investigate further. 

As to my "best I can" comment and your response. Let's just be clear, when I make that statement, it's meant in the light that I'm doing what I know to do at this point. It doesn't mean I'm taking a haphazard approach. I realize that there is a wide range of ways to get glutened and I need to avoid it all costs. Realistically, none of us can control or know every single possibility of where it could happen, we can only avoid it based on what we know. Even if buying a product or eating someplace that takes all the precautions, there's still a chance we can get zapped. Not even the expert Celiac can control it 100%. That's what I mean by "best I can". That said, I'm doing everything possible to avoid it and if/when I find areas of concern, I change it.

My daughters are both adults in their late twenties and have it well under control and they have a lot of knowledge and experience. I'm following their suggestions and continuing to do my own research as well. Main reason for this post was to get some good advice about dealing with the rash.

As I move forward, I am doing everything I know to live gluten free and adjusting as I go if/when I find things I need to do to avoid it.  While my rash may be caused by Gluten Sensitivity, it's always possible that it's being caused by an allergic reaction to something else not gluten related at all. I plan to permantly live like a Celiac even if I'm not. I'm going to work with my doctor and get a referral to an allergist to find out if there's any other things not gluten related that could be causing the rash as I don't think it's reasonable to have tunnel vision with my health involved. I really appreciate the feedback from you and others in this forum and will continue to work hard to learn and just to improve my health.

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13 hours ago, ravenwoodglass said:

Are you avoiding iodine? Both in supplements and food? Iodine can keep the antibodies active in the skin.

 

I wanted to reply specifically to this in this post. Iodine is something that we need. So two questions.

1) Can provide a link or links that backup your suggestion?

2) How much are you saying is too much. If we were to stop it from our diet, there's a whole host of issues that can occur with an iodine deficiency. There's tons of info about that out there.

 

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Hi sbatson, here is info. on iodine & dh.

https://celiac.org/blog/2015/10/dermatitis-herpetiformis-and-iodine-exposure/

https://www.cureceliacdisease.org/wp-content/uploads/0111_CeliacNewsletter_Final.pdf  - the last paragraph in the first column on page 1.

We don't recommend one stops all iodine forever. I'm sure Raven was in a rush or she would have told you that - it just slipped through the cracks. We tell people to reduce the iodine for 2 weeks, maybe a month. You can find a low iodine diet here (just leave off the gluten items also):

http://www.thyca.org/pap-fol/lowiodinediet/

Also, NSAID's tend to aggravate the rash so if you have to take something Tylenol is preferred. You want links for that?

https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/06/Sansaricq_Nov_12.pdf

In this link, look under Standard Therapies - Treatments:

https://rarediseases.org/rare-diseases/dermatitis-herpetiformis/

 

Oral steroids can work great to relieve the itching & lesions but there's a catch..... the second you quit taking them there is a backlash of the rash that makes what you had been dealing with seem like a walk in the park. Steroid creams can be of some help sometimes.

Here is a thread for what to do to cope:

You may also be interested in this:

Dh is sensitive to the tiniest amount of gluten exposure -- the tiniest! Also, there are many of us with dh who can not tolerate even purity protocol grown gluten-free oats. 

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3 hours ago, sbatson1958 said:

I wanted to reply specifically to this in this post. Iodine is something that we need. So two questions.

1) Can provide a link or links that backup your suggestion?

2) How much are you saying is too much. If we were to stop it from our diet, there's a whole host of issues that can occur with an iodine deficiency. There's tons of info about that out there.

 

Iodine is a legitimate cause or source for DH flare-ups.  It does not cause Dh, but aggravates it.  

https://celiac.org/blog/2015/10/dermatitis-herpetiformis-and-iodine-exposure/

Consider reading the DH section of the forum for tips on how to survive DH (besides the obvious at avoiding gluten at all costs!!!)

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On 11/1/2016 at 6:29 PM, cyclinglady said:

Iodine is a legitimate cause or source for DH flare-ups.  It does not cause Dh, but aggravates it.  

https://celiac.org/blog/2015/10/dermatitis-herpetiformis-and-iodine-exposure/

Consider reading the DH section of the forum for tips on how to survive DH (besides the obvious at avoiding gluten at all costs!!!)

That article suggests NOT doing a Iodine Free Diet but recommends seeing a dermatologist. My initial test from a Dermatologist was done right from what I have read by doing the biopsy in an area close to the rash but not on the rash came back negative for DH. 

I met with my Dr today and get referrals to both an Allergist and a different Dermatologist. He doesn't think it's Gluten related, but I'm still going to stay Gluten Free. I've also stopped using some dryer sheets that could be skin irritants and switching my body wash and shampoo to some gentler gluten free products even though the the current products showed up on gluten free lists. I washed all of my clothes without dryer sheets just to insure nothing left in my closet and drawers have dryer sheet residuals. My laundry soap gluten free and clear and free type with no fragrances, etc. 

Aside from those changes, I'm waiting to see what the Allergist and Dermatologist find and recommend.

 

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8 hours ago, sbatson1958 said:

That article suggests NOT doing a Iodine Free Diet but recommends seeing a dermatologist. My initial test from a Dermatologist was done right from what I have read by doing the biopsy in an area close to the rash but not on the rash came back negative for DH. 

I met with my Dr today and get referrals to both an Allergist and a different Dermatologist. He doesn't think it's Gluten related, but I'm still going to stay Gluten Free. I've also stopped using some dryer sheets that could be skin irritants and switching my body wash and shampoo to some gentler gluten free products even though the the current products showed up on gluten free lists. I washed all of my clothes without dryer sheets just to insure nothing left in my closet and drawers have dryer sheet residuals. My laundry soap gluten free and clear and free type with no fragrances, etc. 

Aside from those changes, I'm waiting to see what the Allergist and Dermatologist find and recommend.

 

Good grief!  The link I provided you was just the start of some research related to iodine and the impact it can have on some DH patients.   Google the topic and you will find more information about it.    No one has suggested that you eliminate iodine from your diet, but a reduction might be beneficial if you actually had DH.     How are we to know what you how much iodine you currently consuming on a daily basis?  

I only suggested that you read through the threads of our DH Section for advice and tips from those who are struggling with DH.  We are not doctors here.  Just folks who are willing to help each other based on common sense and experience.  

Honestly, it sounds like you have tested negative to celiac disease (blood and skin biopsies).  Maybe your doctors are not celiac-savvy?   Maybe celiac disease is not your problem?

I hope your new doctors are able to figure it out.  

I wish you well.  

 

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10 hours ago, sbatson1958 said:

That article suggests NOT doing a Iodine Free Diet but recommends seeing a dermatologist. My initial test from a Dermatologist was done right from what I have read by doing the biopsy in an area close to the rash but not on the rash came back negative for DH. 

I met with my Dr today and get referrals to both an Allergist and a different Dermatologist. He doesn't think it's Gluten related, but I'm still going to stay Gluten Free. I've also stopped using some dryer sheets that could be skin irritants and switching my body wash and shampoo to some gentler gluten free products even though the the current products showed up on gluten free lists. I washed all of my clothes without dryer sheets just to insure nothing left in my closet and drawers have dryer sheet residuals. My laundry soap gluten free and clear and free type with no fragrances, etc. 

Aside from those changes, I'm waiting to see what the Allergist and Dermatologist find and recommend.

 

You know, you came on here asking for help & advice but you have taken issue with every little thing we said and nit picked to the inth degree.

You said you had a negative dh biopsy. Then why did you post in the dh section? If you're negative then you're negative. See, I can nit pick too.

You act like you believe everything your doctors say yet on the other hand, you aren't following their advice. They say your problems are not gluten related but you are going to eat gluten free anyway. That flies in the face of what your doctors told you, not to mention that the medical professionals say it's dangerous to eat gluten free when you don't have to.  Have I nit picked enough?

I could go on but I think you get the point.

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sbatson1958,

I want to add to what cycylinglady said when she said  "We are not doctors here.  Just folks who are willing to help each other based on common sense and experience."

Even doctor's get it wrong I want to say sometimes . . . . but I think it is more often than we give them credit for sometimes.

Readers of the well section in the  new york times are familiar the feature "think like a doctor" where often seemingly complex and serious diseases are often very simple in their origin.

Take this article on someone who had a thyroid problem http://www.nytimes.com/2016/09/02/well/live/think-like-a-doctor-the-sick-traveler-solved.html?rref=collection%2Fsectioncollection%2Fwell&action=click&contentCollection=well&region=rank&module=package&version=highlights&contentPlacement=2&pgtype=sectionfront

In the article "the sick traveler solved" from the solution which took 2 months for doctor's (expert in their field) misdiagnosed this problem while her family physician in one afternoon correctly diagnosed her issues as thyroid related.

 Quoting concerning the cure "The usual symptoms of hyperthyroidism are pretty apparent: The heart races; patients are sweaty, shaky, itchy and sometimes feverish. The appetite increases, but because the entire body is revved up, there is often weight loss. Bowel movements become more frequent and sleep harder to come by. Frequent and uncontrolled vomiting is less common but has been reported. This patient had all of these symptoms."

Taking the bolded issues/symptoms if we think gluten is our trigger the we might be like sbatson1958  conclude gluten is a problem for her.  Though I think her main concern is the rashes.

Itchy rashes are not always DH.  It could be a thyroid problem (though I did not know this until today).

See this link http://hypothyroidmom.com/skin-signs-of-thyroid-disease/ that shows rashes that occur with a thyroid diagnosis.

And why I mention it now.  cycylinglady said maybe gluten is not your problem if your tests are negative.

So what else could it be?  Searching Celiac.com I came across another thread about DH rashes and included it my initial reply but didn't call out people's experience with DH and what they did for symptom relief thinking people would read the whole thread/link.

But want to quote here now Knitty Kitty's experience with DH rashes and her subsequent recovery/improvement from it.

Quoting Knitty Kitty

On 3/3/2016 at 2:21 PM, knitty kitty said:

Hello. I have Celiac Disease and developed Pellagra.  

Pellagra is a vitamin deficiency disease caused by a deficiency of niacin.  Symptoms include rashes on the shins and arms and around the neck, basically where the skin is exposed to the sun.  Another symptom is brain fog. If untreated, dementia sets in.  

The small intestine absorbs niacin, other B vitamins, and fat soluble vitamins. When damaged by gluten, the small intestine can no longer absorb these. Even if you don't have diagnosed Celiac Disease, processed foods are under fortified with niacin. Many processed gluten free foods are not fortified at all.  

I had the typical Celiac experience where doctors only treated the symptoms without finding the cause. I took their medicines and only got worse.  I deteriorated physically and mentally.  When I pointed out the rash around my neck, one doctor gave me a test for syphilis (because one goes crazy in the last stages). I felt humiliated.  Fed up, I did my own research.  Causal's necklace, as the rash is called when around the neck, appears in both diseases. That was my first clue. I've found a better doctor who confirmed it was pellagra. 

 The rash appears on the skin where it is exposed to sunlight.  Your rash appeared on your legs during the summer. Were you wearing shorts?  

My arms, especially the one that sits in the car window, gets the rash.  It has scales and blisters both, so it looks like eczema and DH blisters.  It's on my feet where my sandals don't cover, on my lower legs, and will form where there is pressure, like under my waistband and bra.  

I'm taking niacin in the form of nicotinic acid and am feeling much better. My rash improved significantly within four days of starting the niacin supplements.  My brain fog is clearing. 

Please try niacin. Once deficient, it is very difficult to get enough from one's diet to make up that deficiency.  I truly believe niacin deficiency is one of the causes of the brain fog when glutened. 

Hope we all feel better.

I like the way she says it.  I had Celiac disease and I developed Pellagra.

Quoting Knitty Kitty in another response in the thread

"Niacin definitely helped me with the itching!!!"

On 3/3/2016 at 4:15 PM, knitty kitty said:

Niacin definitely helped me with the itching!!!  It has also helped me regain blood sugar control after years of being type two diabetic.  My peripheral neuropathy is going away.  My rashes have cleared.  It's amazed me to feel the difference.  I would be sceptical if I hadn't lived through it myself.  

You might want to consider going dairy free, too.  Gluten and dairy resemble each other to the immune system, so the body may react to both.  One of Niacin's functions is to break down histamine (better than Benadryl).  Another function has to do with nerve health. 

You said you had been diagnosed with depression.  I was, too.  My vitamin D level was extremely low.  After supplementing, the depression lifted.  Again, vitamin D is absorbed in the same part of the small intestine damaged by Celiac Disease.  

Trying to get a diagnosis is frustrating.  I didn't get one for years. I found it more constructive to focus on eating whole fresh foods and avoiding gluten, because that's what you will need to do with a diagnosis. ;)

Hope all this helps!

If it helps one person with DH it (Niacin) should help others with it too!

I would recommend who is dealing with the Celiac rash to read the whole thread.

I am including it here again for easy reference.

At this point I need to summarize some important things to know about Vitamin B-3 Niacin.  These points are in the "at wits end with this rash" thread linked above but in case you don't want to follow the link I will summarize some key points that are primary to a good understanding of how Niacin works in the body.

Quoting the posterboy "Most people do not know there is actually two types of Vitamin B3.  Niacin and the Amide version (non flushing) Niacinamide.  B vitamins often help with stress.  Vitamin B3 helps regulate histamine (think what cause's us to itch) release's in the body and why people flush with the Niacin form but do not with the amide Niacinamide form."

And why I typically recommend the Niacinamide form if I am helping my friends with acne for example because it is the form most commonly found in creams and lotions.

It is the Niacin form that is best for this use because it triggers your histamine stores to flood (flush) out of your skin.

Quoting again from the at wits end thread with this rash " Interesting enough if under a lot of stress Niacin will not flush if your stress is high enough to need that amount of Niacin.  So the flush/hives is actually a natural healthy response but the Niacinamide form does not cause this affect but all the benefits of Vitamin B3 is maintained such as the help with the rash you are experiencing after only a short time (3 to 4 months) using Niacin.

I just wanted you to know to expect it (flushing when using Niacin) so as to not think  you are "allergic" to the vitamin as some people describe it as when they take Niacin in higher dosages not knowing this can happen."

This "allergic reaction" people experience when taking higher dosages 250mg+ is actually your body emptying itself of that dreaded histamine in this case that is causing the crazy itching associated with the rash.

Niacin is widely available in larger doses  but at higher levels can cause the irritating (but natural) flushing (Hives) for the first two to three days of taking higher dose Niacin.

Doctor's tell people at higher dosages (the 250 or 500mg) widely available to take it at night when going to bed and sometimes with Vitamin C I think to limit the flushing affect.

But if  you are careful to titrate it (step up in smaller doses) to 250 mg Niacin either using 100mg or 50 mg dosages.  Doubling with each additional dose. Then the flushing is manageable and in smaller doses (100mg) or less considered pleasant by some and preferable if taking as part of work out program.

that flushing is opening your capillaries allowing more blood flow in (again a natural reaction) and when working out that extra oxygen delivered can help body builders build more muscle and lift more.

But for us  (those who have) DH it (Niacin) over two to three days depletes the stored histamine in the skin eliminating the intense itching like Knitty Kitty found out using Niacin to effectively control her DH itching.

Remember As I often say **************************  this is not medical advice – just one (former) sufferer sharing his experience with other sufferer’s who might not have found as Knitty Kitty quoted in her response to tracym007 the truth about "Niacin, the real story" by Drs. Hoffer, Saul, and Foster,

Linked here again for your reference

On 3/15/2016 at 11:54 AM, knitty kitty said:

I take 250mg with each meal and snacks.  I read a book "Niacin, the real story" by Drs. Hoffer, Saul, and Foster, which advocates high doses.  I started small and am increasing my dosage.  I'm often sceptical of "cure-all," fad diet, latest health craze books, but this one confirms the research I did prior to stumbling across this book.  I have experienced health improvement since beginning to take niacin.  I can't express how big a difference niacin has made to me.  Pellagra is scary. It progresses very subtlely.  I strongly believe that the brain fog we suffer when glutened is due to a drop in niacin. Niacin is instrumental in breaking down and clearing gluten and histamine from our bodies.  

I hope this helpful and as Knitty Kitty said "I hope we all feel better" soon I might add.

And I believe if you are a Celiac that developed Pellagra (as Knitty Kitty said) then it (Niacin) will help you the way it did Knitty Kitty with her rash and it did me with my cross contamination and flareups when eating outside my home.

If you want to know more about my experience with Niacinamide search for the posterboy on Celiac.com and read either my blog in my celiac.com profile or visit the wordpress website in my profile.

But be mindful if you use Niacin in higher doses that Its (flushing/hives) is a normal natural response the same way some one itches (except it is happening all at once) . . .  but it should go away in two to three days when your histamine reserves are depleted and then the crazy itching should stop soon after. 

If you are a Celiac who has developed Pellagra then Niacin will help.  You will only know if you try it.

Interesting tidbit about Pellagra is that the name itself means rough/sour skin in Italian and I think this knowledge is now lost on doctor's today!

As Celiac's know quoting Knitty Kitty one more time "Trying to get a diagnosis is frustrating.  I didn't get one for years."

Even doctor's of medicine teach Pellagra is not a "Disease of Today" http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ so when they see (rashes etc, dementia (brain fog knitty kitty mentioned) etc it too often is not recognized in a clinical setting.

I say it is time for a Time for a Vitamin Reformation and admit the war on Pellagra is not over as Dr. Heaney suggested.  It has just gone underground.

It should be noted with B-Vitamins as Knitty Kitty takes Niacin more frequent is better.  Beeing water soluble B vitamins should be taking through out the the day for best affect.   With meals and snacks as Knitty Kitty does works best.

2/day works twice as fast. 3/day works 3 times as fast once a day.  You get the idea.

I hope this is helpful.

*** this is not medical advice just my own personal experience like Knitty Kitty from research and having tried it myself.  I tell those who will listen.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”

Posterboy,

 

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You know guys, I know  you aren't doctors and I'm not disagreeing with everything that is said. I've also done a lot of Google Searches before and since I came on here. I'm sorry, but in this day and age, I trust Doctors for some things, and I feel I have question and suggest other things because they are so scared these days that they'll get sued or that the Insurance won't pay for it. And for things like Gluten Sensitivity and Celiac, many seem to be clueless though they try to act like they aren't. That aside, Several here have suggested different things, and each promoted it as if its was THE answer. Yes, you are right...you aren't Doctors and I'm asking questions here that Google doesn't necessarily find, but it is my health and I need to research and question things here too. Many of the things pointed out did come up as risky and not recommended in some situations, even at the links pointed to here. 

As far as the DH coming out Negative, that doesn't necessarily mean it's no DH. There is a thing called a False Negative. Also, I don't know how well they did the lab test. I've been pursing the Gluten issue since my daughters and other relatives are having gluten issues and I could have the same Genes. 

I'll go do my research elsewhere since everyone gets their panties in a bunch being questioned or disagreed with. 

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