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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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tinpins

Dermatitis Herpetiformis ... My Journey

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Once I got a diagnosis of DH then right away I connected the osteoporosis to it ... what I found amazing with the osteoporosis diagnosis was that it was all negative ... the medical profession push drugs and scare you to death with facts like "just bending over to pick up a book can break your bones" and "don't fall, because if you break your hip .... " (that one doesn't need repeating). Scary stuff. But all the same no one could convince me to take a drug that didn't make sense to me after I did a bit of reading. I decided to use food and exercise to manage the condition. In retrospect it's amazing that I managed to stabilize my osteoporosis knowing now that all along I was celiac.  No one ever told me osteoporosis could be reversed yet the facts are here. That five year study (notes # 9) was published in 1999!

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Once I got a diagnosis of DH then right away I connected the osteoporosis to it ... what I found amazing with the osteoporosis diagnosis was that it was all negative ... the medical profession push drugs and scare you to death with facts like "just bending over to pick up a book can break your bones" and "don't fall, because if you break your hip .... " (that one doesn't need repeating). Scary stuff. But all the same no one could convince me to take a drug that didn't make sense to me after I did a bit of reading. I decided to use food and exercise to manage the condition. In retrospect it's amazing that I managed to stabilize my osteoporosis knowing now that all along I was celiac. No one ever told me osteoporosis could be reversed yet the facts are here. That five year study (notes # 9) was published in 1999!

I would say if the osteoporosis is caused by celiac it definitely may be reversible. I'm sure there are causes that may not be as responsive.

I'm glad you've found good news - we all need good news :).

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it wouldn't surprise me if a significant % of osteo was celiac related.

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It's sad isn't it that only in retrospect can we connect up all the dots. My osteo specialist did the right tests for celiac but mine came back negative ... no surprise now I know what I know! This paper from a seminar by Prof Peter Green points out the pitfalls in the diagnosis of coeliac disease on the fourth page.

 

http://www.ualberta.ca/~loewen/Medicine/GIM%20Residents%20Core%20Reading/MALNUTRITION,%20MALABSORBTION,%20ABSORBN%20TESTS/celiac%20lancet%20rev%202003.pdf

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I've never read so much in such a short time about a single subject! I'm almost to my one month anniversary without gluten and I'll update my progress after my appt with the dietitian on Monday.  I found these articles by Sayer Ji, worth reading ...

 

Part 1

http://www.greenmedinfo.com/page/opening-pandoras-bread-box-critical-role-wheat-lectin-human-disease

 

Part 2

http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji

 

 

and there's a facebook page that has lots of interesting links I stumbled upon today:

 

https://www.facebook.com/GlutenFreeSociety

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Hi all,

I finally figured out I had DH after 11 months of sleepless nights and thinking I might go crazy from the rash that covered my behind, back, stomach, space between my breasts, neck, and scalp and vaginal area. I do not have health insurance and am currently umeployed so I have been going to a free clinic and made two trips to the ER. I was prescribed many different things and offered several diagnosis all of which I just knew were wrong. I had eliminated any scented soaps and detergents plus double rinsed my laundry. Showered only twice a week in cool to cold water and used Eucerine non scented lotion only, no perfumes, no deodorant, no styling products (my bf loved this, lol), I even bought Neem soap to use. Nothing I did helped. Finally while searching the internet I found some pictures of someone's behind who had DH and I was, Wow, that could be me in that picture. I went back to the free clinic and didn't really receive any help they didn't confirm or deny that I was right and suggested I see a specialist, now if I could do that don't you think I would have been doing that all along. So 19 days ago I started a gluten free diet. The first three days I just made smoothies from fresh veggies and fruit then I started adding things I knew were safe like romaine lettuce topped with grilled chicken breast. The fist 14 days were really hard because I was still extremly itchy and missing my favorite foods. Then about four days ago I noticed I did not itch constantly and the rash seemed to be  healiing. I tried not to get too excited because it has appeared to be healiing before but then within a day or two comes back with a vengence, but I have had several days of continued progress and for the first time in 11 months I have HOPE!

After reading up on Celiac I realized that I have nearly all of the symptoms and have for years. Chronic diarrhea, bloating, fatigue, joint pain, headaches, foggy feeling, hair lose, and vomiting. I had my gallbladder removed seven years ago and had been told the loose stools and diarrhea was just a reaction to having it removed. It didn't make sense to me because that was one of my main complaints when I had a gallbladder.  Anyway I could go on and on but I am just relived I finally know what is going on and smiling because I have hope again that I can be "normal".

 

Jyn

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Hi Jyn & welcome to the board! :)

It's wonderful that you are getting some relief from the itchies. But I will warn you that it may not be permanent. Many, many of us begin getting almost instant (seemingly) relief when going gluten-free but then we get it back to varying degrees & this can last for 2 years or more until all the antibodies get out of our skin. When it flares, if it flares for you, try going low iodine & see if it makes a difference for you ~~~ it does for most of us. See http://www.thyca.org/rai.htm#diet for a low iodine diet.

 

 

Also, NSAID's make it flare so do your darndest to not take any of those. If you have to take something Tylenol seems to be the lesser offender but for me, even Tylenol makes me flare so I take it only as  a last resort.

 

Here are some other links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

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Like Jyn, today I too was smiling after seeing an excellent dietitian who assessed my diet and supplement intake.

 

It's only when you start to heal that you realize how sick you have been and how much the quality of your life has been affected. Today my smile started to return from the inside and was not a pasted on "coping" smile.

 

It's exactly four weeks ago that I started on my gluten-free-for-life journey and the change is remarkable. I was diagnosed with DH on May 16th (International Celiac Awareness Day!). Within a very short time of being gluten free the "suicide itch" started to lessen, and the constant headaches, fuzzy eyes, nose bleeds, tingling feet (and nose!), etc. simply all went away! The first few days I experienced nausea after eating but that slowly subsided. About 10 days into gluten free I ate buckwheat and that gave me grief, and a few days later rice did the same thing, with stomach ache and gut pain that lasted over night, so in desperation I turned to the SCD diet and it worked! I started with the phase 1 of the diet but added some safe foods from phase 3 or 4 (blueberries and raspberries in my morning smoothie). My supplements include Culterelle, Ortho-Bone, Vit D 4000 iu, Omega-3 - 2000 mg, L-glutamine and quercetin. My diet is simple with no processed foods at all ... just simply cooked chicken, fish or beef with vegies and lots of green vegies (all cooked) and lots of apple sauce and bananas. I will stay on the SCD and slowly start to incorporate grains like quinoa and chickpeas back into my diet if I can tolerate them. I have a lot of food allergies so my purpose of visiting a dietician was to ensure that I was providing my body with the proper nutrients for healing.

 

My dietitian confirmed the appropriateness of the diet and only wanted me to include foods that had more iron in them to increase my ferritin level (like pumpkin seeds) and to drink more water.

 

The books and dietitians she highly recommends are:

 

 

Shelley Case

http://glutenfreediet.ca

 

 

Alexandra Anca

http://www.alexandraanca.com/index.php

http://www.alexandraanca.com/articles.php

 

My journey back to good health is only just beginning and I still have to be checked for kidney function because it appears there is something not quite right there, but I am optimistic that now that I am not slowly poisoning myself to death, the damage can be reversed or at least halted. Osteoporosis is reversible (see my post # 75) and my dermetitis herpetiformis is slowly lessening in intensity so that I no longer look for ice-packs for relief. My healing journey has begun and I'm getting my life back  :) 

 

I'm so grateful for this community that helped me and pointed me in the right direction. Thanks to everyone here who is so supportive and encouraging.  :wub: 

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Well ladies and gents . . . the more I read today the more discouragement  I feel.  Food and Dapsone after 8 months has not cleared this horrific rash nor stopped new lesions, blisters, itching, stinging, etc.  

 

I really feel good that Tinpins has found relief with diet alone.  That is absolutely fantastic.  

 

I will renew my search for an answer for my rash.  It may be DH that is not responding to diet or Dapsone.  It may be something else that I don't want to speak into my life but . . . I have to have relief.  

 

I did go to the pool and I also hand a tanning booth session.  The pool was okay and the sun didn't cause the rash to be worse.  I used a tanning booth that was not to burn (? rays) and I didn't burn, seemed to dry my skin but none of the lesions have disappeared.  

 

I have been showering, applying peroxide (yes it burns) and applying Bacitracin Zinc Ointment trying to fight the infection (just started this week). Taking Benedryl and my new dosage of Dapsone.  I thought I felt relief but after the past 2 days. . .been terribly itchy and broke open many lesions on my side and buttocks.  Blood just flows out of these lesions.  I really feel I'm back to the first stages of my outbreak from February of 2012.  I may post some photos when my phone/camera is fixed.  Until then . . gluten-free and taking Dapsone.   :rolleyes:   I will call my Oncologist and ask for testing this week.

 

 

~ Lyn  

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Like Jyn, today I too was smiling after seeing an excellent dietitian who assessed my diet and supplement intake.

 

It's only when you start to heal that you realize how sick you have been and how much the quality of your life has been affected. Today my smile started to return from the inside and was not a pasted on "coping" smile.

 

It's exactly four weeks ago that I started on my gluten-free-for-life journey and the change is remarkable. I was diagnosed with DH on May 16th (International Celiac Awareness Day!). Within a very short time of being gluten free the "suicide itch" started to lessen, and the constant headaches, fuzzy eyes, nose bleeds, tingling feet (and nose!), etc. simply all went away! The first few days I experienced nausea after eating but that slowly subsided. About 10 days into gluten free I ate buckwheat and that gave me grief, and a few days later rice did the same thing, with stomach ache and gut pain that lasted over night, so in desperation I turned to the SCD diet and it worked! I started with the phase 1 of the diet but added some safe foods from phase 3 or 4 (blueberries and raspberries in my morning smoothie). My supplements include Culterelle, Ortho-Bone, Vit D 4000 iu, Omega-3 - 2000 mg, L-glutamine and quercetin. My diet is simple with no processed foods at all ... just simply cooked chicken, fish or beef with vegies and lots of green vegies (all cooked) and lots of apple sauce and bananas. I will stay on the SCD and slowly start to incorporate grains like quinoa and chickpeas back into my diet if I can tolerate them. I have a lot of food allergies so my purpose of visiting a dietician was to ensure that I was providing my body with the proper nutrients for healing.

 

My dietitian confirmed the appropriateness of the diet and only wanted me to include foods that had more iron in them to increase my ferritin level (like pumpkin seeds) and to drink more water.

 

The books and dietitians she highly recommends are:

 

 

Shelley Case

http://glutenfreediet.ca

 

 

Alexandra Anca

http://www.alexandraanca.com/index.php

http://www.alexandraanca.com/articles.php

 

My journey back to good health is only just beginning and I still have to be checked for kidney function because it appears there is something not quite right there, but I am optimistic that now that I am not slowly poisoning myself to death, the damage can be reversed or at least halted. Osteoporosis is reversible (see my post # 75) and my dermetitis herpetiformis is slowly lessening in intensity so that I no longer look for ice-packs for relief. My healing journey has begun and I'm getting my life back  :) 

 

I'm so grateful for this community that helped me and pointed me in the right direction. Thanks to everyone here who is so supportive and encouraging.  :wub: 

I also have had problems with waking up with a bloody nose and have noticed that my nasal allergies have almost disappeared, I didn't make the connection until I read your reply.

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Hi Jyn & welcome to the board! :)

It's wonderful that you are getting some relief from the itchies. But I will warn you that it may not be permanent. Many, many of us begin getting almost instant (seemingly) relief when going gluten-free but then we get it back to varying degrees & this can last for 2 years or more until all the antibodies get out of our skin. When it flares, if it flares for you, try going low iodine & see if it makes a difference for you ~~~ it does for most of us. See http://www.thyca.org/rai.htm#diet for a low iodine diet.

 

 

Also, NSAID's make it flare so do your darndest to not take any of those. If you have to take something Tylenol seems to be the lesser offender but for me, even Tylenol makes me flare so I take it only as  a last resort.

 

Here are some other links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

 

Thank you for your post. I've been reading non-stop for the past three weeks and have a feeling I will be reading a lot more in the future. I am a seriously picky eater so at first this felt like a death sentence. I love fruit so after I did the three days of only smoothies I stuck with a smoothie for breakfast. I vary it daily but always put in at least three vegetables usually spinach, kale, and carrots and three fruits plus a tablespoon of ground flax seed.

My bf is not taking the cross contamination threat seriously so I have to be extra careful in the kitchen and prewash all my cookware and utensils. He tried to kiss me today after taking a huge bite of cake. The look I gave him could have turned some to stone, lol. I think once he sees the improvements he will do better. I can't bad mouth him too much he has spent an enormous amount of money on food for me to go gluten free. :)

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Well ladies and gents . . . the more I read today the more discouragement  I feel.  Food and Dapsone after 8 months has not cleared this horrific rash nor stopped new lesions, blisters, itching, stinging, etc.  

 

I really feel good that Tinpins has found relief with diet alone.  That is absolutely fantastic.  

 

I will renew my search for an answer for my rash.  It may be DH that is not responding to diet or Dapsone.  It may be something else that I don't want to speak into my life but . . . I have to have relief.  

 

I did go to the pool and I also hand a tanning booth session.  The pool was okay and the sun didn't cause the rash to be worse.  I used a tanning booth that was not to burn (? rays) and I didn't burn, seemed to dry my skin but none of the lesions have disappeared.  

 

I have been showering, applying peroxide (yes it burns) and applying Bacitracin Zinc Ointment trying to fight the infection (just started this week). Taking Benedryl and my new dosage of Dapsone.  I thought I felt relief but after the past 2 days. . .been terribly itchy and broke open many lesions on my side and buttocks.  Blood just flows out of these lesions.  I really feel I'm back to the first stages of my outbreak from February of 2012.  I may post some photos when my phone/camera is fixed.  Until then . . gluten-free and taking Dapsone.   :rolleyes:   I will call my Oncologist and ask for testing this week.

 

 

~ Lyn  

Oh Lyn, I'm so sorry. Blood flowing out of sores sounds terrible. I had fluid coming out of mine, but never blood (though I did scratch them to the point of bleeding a few times). 

 

I hope you get into the doctor soon, and get some help. I do know how it is to suffer with a rash of unknown origins for years...and how defeating it feels when you can't find relief.

 

I know you're fearing the worst, and I hope there's another explanation and a solution.

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Oh dear. This is a wretched journey for you. I am still covered in lesions but they are not insanely itchy any more and they no longer bleed profusely. Your situation sounds so painful and unbearable ...  I too hope you can see your doctor really really soon. 

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Lyn, I'm so sorry you are going through this & I know the doubt & wondering is torturous in itself. One thing i want to point out is that Sanneke70 who responded to your post asking for experiences of those who had been on Dapsone stated that she had been on 100mg. to 125 mg. of Dapsone & then only came down to 50mg. Maybe you just need more.

I have searched the internet for photos of the non Hodgkins lymphoma rash & there are deuced few. I did come up with 2.

http://www.pulsetoday.co.uk/Pictures/web/l/h/g/rash__M.jpg

 

And on pg. 5 of this PDF:

http://www.fmshk.org/database/articles/hkspmnewsletter2008april1p13p17skinrashinaladywit.pdf

 

I also want to say that you may be experiencing increased itching, rash due to the swimming in the pool. The chlorine may be doing you harm. And somewhere I read in 2 separate papers that UV light will make the rash worsen --- you've been going to the tanning salon. I wish I could find those papers now & give you a link to them but I can not find them.

 

Get tested by your oncologist as you plan to do but try not to stress too much on this. Our minds can do some awful things to us & sometimes I think maybe we read too much. It's sort of like watching scary movies ~~~~ suddenly we are seeing monsters everywhere.

 

GREAT BIG ((((((((LYN))))))

 

Let us know what happens.

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I am now at the end of day 8 of gluten free. So far, I feel great and thanks to you tintin, I got started! Icould not wait for another outbreak. I nod my head over and over while reading these posts but I am still not in the "I know its DH " stage yet, as I have not truely seen any healing. (after 6 months, a very strong cortison finally started the healing)

 

I have had 2 episodes of wierdness though:

1. itchy hands (2 nights last week)-I have been eating jubejubes as a little treat because I know they are gluten free but I also just read they are high in iodine so maybe thats what caused the extreme itch on my hands? Farfetch? 

 

2. Massive indigestion on saturday night. I finally had to go to bed because it wouldnt go away. Dinner was nothing unusual (bbq chicken, asparagus and roasted potatoes)...the indigestion was a part of my daily life last summer and into the fall but seemed to subside through the winter. 

 

Lyn, I am glad to hear that you can go into the pool! Pools are questionable as to whether they trigger my massive outbreaks. I am scared to try now that my skin is finally starting to clear up. 

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I also have had problems with waking up with a bloody nose and have noticed that my nasal allergies have almost disappeared, I didn't make the connection until I read your reply.

 

It's amazing when you start to list all the symptoms ... it's quite shocking actually what we end up coping with all because we didn't know that we were poisoning ourselves!

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Thank you for your post. I've been reading non-stop for the past three weeks and have a feeling I will be reading a lot more in the future. I am a seriously picky eater so at first this felt like a death sentence. I love fruit so after I did the three days of only smoothies I stuck with a smoothie for breakfast. I vary it daily but always put in at least three vegetables usually spinach, kale, and carrots and three fruits plus a tablespoon of ground flax seed.

My bf is not taking the cross contamination threat seriously so I have to be extra careful in the kitchen and prewash all my cookware and utensils. He tried to kiss me today after taking a huge bite of cake. The look I gave him could have turned some to stone, lol. I think once he sees the improvements he will do better. I can't bad mouth him too much he has spent an enormous amount of money on food for me to go gluten free. :)

 

At my dietitian's visit today she reviewed closely my diet for the past week and praised my morning smoothie which sounds exactly the same as yours. I usually add kefir or yogourt to mine as well and she suggested perhaps substituting greek yogurt for it occasionally because it is higher in protein. The other thing I add is a few tablespoons of ground almond (or almond butter) which she said is excellent, and finally she suggested throwing in a some sunflower seeds because you want to get your ferritin levels back up again and they are one of the best things to eat for that. And drink lots of water was her other comment. 

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I am now at the end of day 8 of gluten free. So far, I feel great and thanks to you tintin, I got started! Icould not wait for another outbreak. I nod my head over and over while reading these posts but I am still not in the "I know its DH " stage yet, as I have not truely seen any healing. (after 6 months, a very strong cortison finally started the healing)

 

I have had 2 episodes of wierdness though:

1. itchy hands (2 nights last week)-I have been eating jubejubes as a little treat because I know they are gluten free but I also just read they are high in iodine so maybe thats what caused the extreme itch on my hands? Farfetch? 

 

2. Massive indigestion on saturday night. I finally had to go to bed because it wouldnt go away. Dinner was nothing unusual (bbq chicken, asparagus and roasted potatoes)...the indigestion was a part of my daily life last summer and into the fall but seemed to subside through the winter. 

 

Lyn, I am glad to hear that you can go into the pool! Pools are questionable as to whether they trigger my massive outbreaks. I am scared to try now that my skin is finally starting to clear up. 

 

Sounds like you're on the right track if you can say you're feeling great : )

 

Re your itchy hands, I always get itchy extremities if I have an allergic reaction to something ... starts there and progresses, so maybe an allergic reaction to something in the jujubes?

 

And roasted anything right now gives me indigestion and I didn't used to suffer with indigestion until DH came to visit me. I've followed the SCD diet recommendation of eating quite bland things ... stews rather than BBQ or roasted, because I had a bad episode of indigestion after eating a small lamb chop and some roasted vegies about 10 days ago. 

 

Best thing I did was to start a food diary and faithfully write in it everything I eat and any reaction I have. It really helps.

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Lyn, I'm so sorry you are going through this & I know the doubt & wondering is torturous in itself. One thing i want to point out is that Sanneke70 who responded to your post asking for experiences of those who had been on Dapsone stated that she had been on 100mg. to 125 mg. of Dapsone & then only came down to 50mg. Maybe you just need more.

I have searched the internet for photos of the non Hodgkins lymphoma rash & there are deuced few. I did come up with 2.

http://www.pulsetoday.co.uk/Pictures/web/l/h/g/rash__M.jpg

 

And on pg. 5 of this PDF:

http://www.fmshk.org/database/articles/hkspmnewsletter2008april1p13p17skinrashinaladywit.pdf

 

I also want to say that you may be experiencing increased itching, rash due to the swimming in the pool. The chlorine may be doing you harm. And somewhere I read in 2 separate papers that UV light will make the rash worsen --- you've been going to the tanning salon. I wish I could find those papers now & give you a link to them but I can not find them.

 

Get tested by your oncologist as you plan to do but try not to stress too much on this. Our minds can do some awful things to us & sometimes I think maybe we read too much. It's sort of like watching scary movies ~~~~ suddenly we are seeing monsters everywhere.

 

GREAT BIG ((((((((LYN))))))

 

Let us know what happens.

 

 

Thank you Squirmy, Prickly and Tinpins for your concern and ((hugs)).

 

I went to the pool only once and then the tanning stand-up booth, just one time.  I really don't think either caused a bad reaction.  My niece has been here and is preparing to join her husband, in Japan.  Just been too busy for pool or tan time.   :) 

 

If you look for skin lymphomas or rash from NH Lymphoma you will find more photos.  Some of the photos are really gruesome but a few resemble my rash however so do the DH photos.   :unsure:   The article about weight loss, rash on breast, buttocks and usually in areas covered by clothing, night sweats, intense itch, bumps under the skin. . . in regard to skin lymphoma, really startled me. Had to check off each one as a yes.  One good thing is that type of lymphoma is easily treated.    

 

I am not on a blood thinner.  I read that when scratched the lesions would bleed and mine sure did.  I bent down to scratch a group of lesions on my leg. . . my sister looked over and said, OMW.  They were bleeding and blood was streaming down my leg.  I have had the ones on my backside bleed so much while in the shower (didn't know they were) until I noticed the water running into the drain was red.  Every night gown I have is ruined.  So . . . who knows?   I know reading on line can really give you a scare.   :ph34r: 

 

I will keep you all updated . . . I will keep taking the Dapsone and eating gluten-free until . . . BTW, I am now on .75 mg and may just take an additional dose until I see the doctor.  I haven't had a bad reaction to it BUT believe me, if any symptoms will go to ER or see the doctor, asap.  Thanks to all that have been so kind to me and all the good information. . . I doubt I will ever stop eating gluten-free, too many benefits.

 

~  Lyn

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I was thinking late last night about how important a forum like this is for us to be able to begin to make sense of what is happening to our bodies. The "symptoms" issue was what prompted this post.

 

Before finding this forum, there we are, all struggling along alone and wondering why no one else we know has constant headaches, pulsatitle tinnitus, bleeding noses, thin nails, tingling feet and nose, occasional blurry eyes, indigestion, dry skin, canker sores ... and of course we don't mention the fatty stools and the gut issues. Except maybe to our PCP/GPs ... and if they don't connect the dots we soldier on. We get tested unnecessarily for stomach ulcers, parasites, hepatitis, stress tests, etc.  We begin to sound like hypochondriacs to anyone who is not afflicted by this condition so we mostly keep quiet about it ... for years until things get serious like the appearance of DH with all its misery and it obvious seriousness ... the suicidal itching, the agony, the profuse bleeding.

 

Even a diagnosis of osteoporosis and the tests that were done at that time didn't reveal my underlying condition and so I carried on poisoning myself for five more years. The last 15 months with DH was a real downward turn for me with my health and I really thought I was genetically fated to have a short life ... that's how unwell I felt. And this after living a healthy life ?? ... I felt like my body was cheating me.

 

To find out just a few short weeks ago that the "healthy" food I was eating was my poison was an emotional relief beyond words ... my body wasn't cheating me it was trying to get my attention ... and I didn't understand what it was trying to tell me!

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I was thinking late last night about how important a forum like this is for us to be able to begin to make sense of what is happening to our bodies. The "symptoms" issue was what prompted this post.

Before finding this forum, there we are, all struggling along alone and wondering why no one else we know has constant headaches, bleeding noses, thin nails, tingling feet and nose, occasional blurry eyes, indigestion, dry skin, canker sores ... and of course we don't mention the fatty stools and the gut issues. Except maybe to our PCP/GPs ... and if they don't connect the dots we soldier on. We get tested unnecessarily for stomach ulcers, parasites, hepatitis, stress tests, etc. We begin to sound like hypochondriacs to anyone who is not afflicted by this condition so we mostly keep quiet about it ... for years until things get serious like the appearance of DH with all its misery and it obvious seriousness ... the suicidal itching, the agony, the profuse bleeding.

Even a diagnosis of osteoporosis and the tests that were done at that time didn't reveal my underlying condition and so I carried on poisoning myself for five more years. The last 15 months with DH was a real downward turn for me with my health and I really thought I was genetically fated to have a short life ... that's how unwell I felt. And this after living a healthy life ?? ... I felt like my body was cheating me.

To find out just a few short weeks ago that the "healthy" food I was eating was my poison was an emotional relief beyond words ... my body wasn't cheating me it was trying to get my attention ... and I didn't understand what it was trying to tell me!

Exactly. Your body was trying to get your attention.

I've cycled through so many "stages" of AI disease/celiac/thyroid it's ridiculous. Cycling is a symptom, apparently, and no one talks about it.

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It's all about "connecting the dots" and many practitioners are so specialized that those of us that present with too many "dots" are puzzling to a lot of them. I listened to an exceptional interview with Sir Ken Robinson last week, and he has the most watched TED talk ever. Part way through his interview with Charlie Rose he refers to exactly this issue. He refers to how easy it is to diagnose and treat a patient who has a spear through their arm, but how hard it is to solve systemic issues. We have to become detectives to solve the puzzle.

 

My dietitian recommended a book to me yesterday along the same lines:

"How doctors think" by Jerome Groopman

 

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You & Prickly have said it all. I wholeheartedly agree! 

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I was thinking late last night about how important a forum like this is for us to be able to begin to make sense of what is happening to our bodies. The "symptoms" issue was what prompted this post.

 

Before finding this forum, there we are, all struggling along alone and wondering why no one else we know has constant headaches, pulsating tinnitus, bleeding noses, thin nails, tingling feet and nose, occasional blurry eyes, indigestion, dry skin, canker sores ... and of course we don't mention the fatty stools and the gut issues. Except maybe to our PCP/GPs ... and if they don't connect the dots we soldier on. We get tested unnecessarily for stomach ulcers, parasites, hepatitis, stress tests, etc.  We begin to sound like hypochondriacs to anyone who is not afflicted by this condition so we mostly keep quiet about it ... for years until things get serious like the appearance of DH with all its misery and it obvious seriousness ... the suicidal itching, the agony, the profuse bleeding.

 

Even a diagnosis of osteoporosis and the tests that were done at that time didn't reveal my underlying condition and so I carried on poisoning myself for five more years. The last 15 months with DH was a real downward turn for me with my health and I really thought I was genetically fated to have a short life ... that's how unwell I felt. And this after living a healthy life ?? ... I felt like my body was cheating me.

 

To find out just a few short weeks ago that the "healthy" food I was eating was my poison was an emotional relief beyond words ... my body wasn't cheating me it was trying to get my attention ... and I didn't understand what it was trying to tell me!

Speaking of pulsatitle tinnitis, I am finally getting a CT scan to see if they can find the cause. I actually had to get upset with my doc about getting it done becuase she was going to send me away with the idea that I have to suck it up....just like the rest of the issues! WHo knows if there will be an answer...or perhaps its low b12 and is a simple fix but man would I like to know! 

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Speaking of pulsatitle tinnitis, I am finally getting a CT scan to see if they can find the cause. I actually had to get upset with my doc about getting it done becuase she was going to send me away with the idea that I have to suck it up....just like the rest of the issues! WHo knows if there will be an answer...or perhaps its low b12 and is a simple fix but man would I like to know! 

 

This was a symptom that was becoming more and more frequent for me towards the end of my gluten feasting life.

 

It's a most unpleasant and worrisome experience ... I'm sure you've seen this info but for anyone who hasn't, this gives a good overview of what it is:  http://www.tinnitus.org.uk/pulsatile-tinnitus

 

I have not had one episode of this since I went gluten free! 

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
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