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I Have So Many Questions


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#16 ItchyAbby

 
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Posted 11 July 2013 - 02:49 PM

Goodness, I am so overwhelmed again. Two years? Does that mean that I will keep having three weeks out of every month of rash hell? I want to cry. I know that this is not a quick process, but I don't know how the handle the idea that this will continue to disrupt my life so significantly for another couple of years. This has messed with my life and my sanity to such a degree that I would not have thought possible. It's such an emotional roller coaster. I don't know what I would do without my amazing family and S.O. (who is my hero - he has been absolutely essential for getting me through this.)

 

Are the flares at least fewer and farther between as time goes on? I imagine it's different for everyone...

 

I will check about getting another full blood and metabolic panel, now that my diet is more limited. I am also working with a naturopath and she is great.

 

I really need to figure out how to manage the stress - that only makes it worse. The sleep deprivation doesn't help either. Meditation has helped a lot. I hope to be able to exercise when this flare calms down.

 

A few more questions:

- Are any of you using Dapsone? I am terrified of it, but wondering if I need to consider it

- I try very hard not to scratch because it really seems to make it worse and create open sores. If I feel the itchies starting, I jump in the shower and blast the area(s) with really hot water. If I have scratched at all in the minutes before the shower, this hurts like hell. But If I have not scratched, it takes out the itch for 2-3 blissful hours. It's pretty intense when the water first hits it - a strong mix of pleasure/pain, but it really works. I saw that most people do not like hot showers, but I am wondering if anybody else does this?

- Has anyone tried the tests from Entero Labs? My dear mom just ordered Panel B for me (includes a Gene test).

- If you know of any great Celiac specialists in Portland, Oregon please send their info my way!

- Shoot, I had another one or two but I have forgotten now...hopefully it will come back to me.

 

I am overwhelmed, both in the good way by all your helpful responses, and in a difficult way, looking at the hard road of uncertainty in front of me. I am determined to get better but sometimes it is so exhausting.


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


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#17 ItchyAbby

 
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Posted 11 July 2013 - 03:01 PM

Oh! I just remembered another question: Have any of you lost hair or had weird hair growth patterns? About 2 year ago I tried to grow out my hair. Most of it got longer (though it seemed to take forever) but the area around my crown did not seem to grow or grew very slowly, or possibly the hair fell out when it got to a certain length. Basically, I have this "crown" of short hairs that have not gotten longer than say, 3 inches. I ended up going back to a short haircut.

 

Anyway, it kind of makes sense, if I have been "poisoned" by wheat/gluten, even in the small amounts I ate, that my hair may not be as healthy.

 

I guess this could also be a thyroid concern, huh?


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#18 squirmingitch

 
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Posted 11 July 2013 - 04:26 PM

Okay, take a deep breath, & then another & again. Now, calm down. You may not have the dh flare or persist for 2 years or even 1 year. Some do, some don't. We're all hoping you are going to clear quickly. Prickly did once she figured out it was dh & went gluten-free & then went low iodine for a bit. 

And there's no way to say if your flares will be mild or not nor how often it will happen.

Just think positive Abby. That's the best way to let the stress go. You have gone gluten-free & that's THE treatment. You are on the road to recovery. Don't think about farther than tomorrow.

 

Dapsone.

Dapsone is scary & I swore I would never try it. but then I had a viscous, horrid outbreak & I would have taken it if I could have gotten some. And it's quite possible that I would have an anaphylactic reaction to it since I am allergic to sulfa drugs. Many have tried it & not been able to tolerate it. Others have used it & had no problems with it. Prickly tried it I believe -- she can tell you about her experience.

 

Try this forum for a good doc in your area:

http://www.celiac.co...isease-doctors/

 

I did a quick search of that forum via Google & came up with these possibilities that you can read:

http://www.google.co...land&gsc.page=1

 

And you might Google celiac support groups in Portland ---- I believe there is a major group there --- you could contact them for a list of docs.

 

Hair

Celiac disease is associated with alopecia. Most ppl who have had hair falling out have recovered it after time being gluten-free. I had mine falling out when the lesions were so bad in my scalp. It grew back. I have always had extremely long hair --- to the bottom of my butt. It was weird b/c for several years it was getting shorter. It was barely reaching the top of my crack. Guess what? Since going gluten-free it has begun growing again. It is now back down to the bottom of my butt. AND it's shining again! YAY!

 

You may find a lot of things you didn't even notice or thought were mol normal improving over time. It's amazing how this stuff affects every single cell in our bodies it seems.

 

I was dxc'd with DJD & was getting epidurals for the pain. My pain has gone so drastically since being gluten-free! And I haven't had an epidural. How about them apples? I was eating gas X like candy & still belching like a sailor --- no more! I had continual indigestion --- no more. Lots of things Abby, lots of things.

 

Smile hon. You're strong & you will come out the other side. You will have moments of self doubt & you will have times of great satisfaction. We're here to hold your hand if you want to have a pity party. We all have had 1 or more ourselves.


  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#19 pricklypear1971

 
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Posted 11 July 2013 - 05:47 PM

Okay, like squirmy said, breathe.

First, lack of nutrients could be causing the poor hair growth. That said, I reco a thorough thyroid work up including antibodies. You are autoimmune and thyroid is an obvious thing to watch.

Second, as squirmy said, you may not flare like this for two years. I have flared but they are a FRACTION of what they were - quite livable. As the antibodies fall the rash lessens. My last outbreak was no more than a minor irritation, and the intensity fell drastically in the first few months after going gluten-free and li.

Third, I'm allergic to sulfa and never tried dapsone.

Fourth, ice packs and pressure at night to help you sleep. Coat your body in ice packs.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#20 squirmingitch

 
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Posted 11 July 2013 - 05:50 PM

Abby, I do not want you to get discouraged. I did not put the info. out there about it taking 2 yrs. or more to be free of the rash in order to scare you. I put it out there to let you know that you can have flares even gluten-free. If I did not make you aware of that & you go along & then get a flare then you could think you don't have dh b/c you are gluten-free & here it is, the rash flaring. It's important to know that can & does happen. 

 

Now, you were gluten-free & the rash resolved until you got into the seafood which = iodine overload. I take that as a very good sign in your case. So do not despair. You may not have a long haul with this stuff.

 

Looking back, in hindsight, now that I know what I have, I can clearly see that I was a celiac even as a kid. As a teen I could not tolerate beer. it gave me terrible gut issues & I refused to drink it b/c of that. So I have had this building in my system for 40+ years or more. I am 56 now. The rash began to present for me around 8 years ago. Mild, very mild at first. So I can see now that I was a celiac with GI issues & then it morphed into the rash.

 

Yours may be a totally different case.

 

I am getting better! Where the individual lesions or blisters used to last 4 to 6 weeks; they now are down to 1 - 4 days before they begin healing & the healing is much faster. I mainly only have it on my legs from the knees down & my ankles, feet these days. I get a few spots various places on my body but they are short lived & they don't itch as much. I AM healing. I WILL get there. 


  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#21 ItchyAbby

 
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Posted 11 July 2013 - 06:21 PM

Thank you both so much, Squirmy and Prickly. This whole thing has been such an emotional hurricane. Some days I feel good and strong and others, I just fall apart and cry and cry on my sweetheart's shoulder. For the first few months of this year, I kept saying how "gross" and "like a leper" I felt - I have banished that language and focused on being more loving toward myself.

 

This is the hardest thing I have ever gone through. It feels like I am being tortured.

 

I know you did not mean to scare me, Squirmy, and I want the truth of your experience. It's sometimes hard to hear, but it's so helpful. Every step of the way, there have been realizations like this that scare me and leave me overwhelmed. That must just be the way it is when someone is adjusting to a new reality, I assume. I have so much to learn.

 

I am so curious to see what other things might improve as I stay truly gluten free, besides my hair growth. Maybe my horrible periods will ease up. Maybe I won't have random bouts of IBS. Maybe my anxiety will lessen. Who knows?

 

And thank you Prickly: My freezer is well stocked with ice packs! :) It's the only way I can get any sleep at night.

 

Two more questions:

- Do you ever notice that your rash correlates with your menstrual cycle? Mine seems to some months but that may be a red herring.

- Thyroid tests: I am looking at some from Personalabs, that I can order without needing a doctor. When you say full thyroid panel, do you mean all of these?:

Antithyroglobulin Antibodies

Calcium, Ionized, Serum

Calcium, Serum

Fatigue Profile

Parathyroid Hormone (PTH), Intact

Reverse T3

T4, Free, Direct, Serum

Thyroid Peroxidase (TPO) Antibodies

Thyroid Profile with TSH

Thyroxine-binding Globulin (TBG), Serum

Total T3

Total T4

Triiodothyronine (T3), Free, Serum (Free T3)

TSH


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#22 squirmingitch

 
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Posted 11 July 2013 - 06:43 PM

Prickly & others are better at the thyroid panels than I so I will let her answer that.

 

On the anxiety thing.... another of the infamous things related to celiac disease as well as depression. And yeah, the anxiety is a biggie! It can be major. big bad anxiety. I wish you could see the difference in my hubs on that score. I had anxiety too for the 1st time in my life for about 2 years before going gluten-free. It's gone now.

 

I'll lay some more money down on you today ~~~ IBS will go away. IBS is a dx that almost every single celiac has had & it's a big cop out by docs. IBS is a symptom not a diagnosis.

 

I has bloat that was like a colicky horse. I would look 15 months pregnant & fell it too. All gone now.

 

As to the question about the period & the rash ~~~ I had a hysterectomy at age 37 so can't answer you there.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#23 pricklypear1971

 
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Posted 11 July 2013 - 07:14 PM

Thank you both so much, Squirmy and Prickly. This whole thing has been such an emotional hurricane. Some days I feel good and strong and others, I just fall apart and cry and cry on my sweetheart's shoulder. For the first few months of this year, I kept saying how "gross" and "like a leper" I felt - I have banished that language and focused on being more loving toward myself.

This is the hardest thing I have ever gone through. It feels like I am being tortured.

I know you did not mean to scare me, Squirmy, and I want the truth of your experience. It's sometimes hard to hear, but it's so helpful. Every step of the way, there have been realizations like this that scare me and leave me overwhelmed. That must just be the way it is when someone is adjusting to a new reality, I assume. I have so much to learn.

I am so curious to see what other things might improve as I stay truly gluten free, besides my hair growth. Maybe my horrible periods will ease up. Maybe I won't have random bouts of IBS. Maybe my anxiety will lessen. Who knows?

And thank you Prickly: My freezer is well stocked with ice packs! :) It's the only way I can get any sleep at night.

Two more questions:
- Do you ever notice that your rash correlates with your menstrual cycle? Mine seems to some months but that may be a red herring.
- Thyroid tests: I am looking at some from Personalabs, that I can order without needing a doctor. When you say full thyroid panel, do you mean all of these?:
Antithyroglobulin Antibodies
Calcium, Ionized, Serum
Calcium, Serum
Fatigue Profile
Parathyroid Hormone (PTH), Intact
Reverse T3
T4, Free, Direct, Serum
Thyroid Peroxidase (TPO) Antibodies
Thyroid Profile with TSH
Thyroxine-binding Globulin (TBG), Serum
Total T3
Total T4
Triiodothyronine (T3), Free, Serum (Free T3)
TSH

Those tests are repetitive. Try this link for info about constructing a full panel: http://thyroid.org/b...st-for-thyroid/

I'd put one together that includes free t3/t4, total t3/t4, antibodies, and tsh. You also need to test your iron (ferritin and saturation http://labtestsonlin...s/iron/tab/test), d, b's. some would include calcium and magnesium. Here's a link about ordering tests: http://thyroid.about...selftesting.htm

As far as the rash fluctuating with your cycle, yes. I noticed that. I went through a stage where my progesterone was so low I had breakthrough bleeding, plus the rash. Topical natural progesterone helped. I hate to pile more on, but you need to start reading more about adrenal damage from autoimmune disease. There's an excellent chance your adrenals need support - and if they are struggling, your hormones are struggling. I suspect you have more damage than you realize. Most of us do.

You need to start thinking of the rash as an autoimmune disease, and start thinking of yourself as an autoimmune patient. Dh is celiac disease, and celiac is an autoimmune disease...and if you have one you are at high risk to develop another...and you need to closely monitor yourself for them.

That said, just breathe. It's going to get better now. You know gluten and iodine affect the rash. You can control your exposure to both and influence the rash. You can figure out the tests and supplements you need. You'll get there. You really need to find a doctor/nd to work with, that you trust or at least one you have a mutually respectful relationship with.

I know you're exhausted and I know you're tired of the pain and misery of that rash. You're in the right place. You have help now.
  • 2
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#24 ItchyAbby

 
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Posted 14 July 2013 - 12:44 PM

The past two days have been really hard. The rash was the worst it's ever been and I was stressing about finding a new PCP. I was so annoyed with the guy they gave me, it was all-consuming. What an arrogant prick! But then trying to negotiate finding someone knew and hoping that they would listen to me, really listen and be open minded? It all felt so impossible, far away, too much. I cried so much on Friday that my eyes hurt and were puffy (My S.O. calls it blubberitis. Hehe. )

 

But slowly I worked through the fear and realize that I could stop this panicked tailspin. I have an excellent nautropath that I am working with and I will see her this week. I ordered the tests from Enterolabs and ahem, "processed" them today, and I am ordering thyroid tests from PersonaLabs. I am eating so incredibly well I want to high-five myself! Tons of fresh, organic veggies at every meal (it's the right time of year for it), fruit, especially blueberries and marion berries that my parents grow, duck and chicken egg whites (also organic, also grown by my family), and fresh meats, pastured and grass fed when possible, beef, pork, chicken, lamb. Despite the rash, the lack of sleep and the stress/anxiety, I feel great! Ha!

 

And - I don't want to jinx it - but it appears that the rash may be rounding the corner. A lot of areas are darker, either red or brown, and dried, some are scabby and flaky and considerably less itchy. Swelling is down, overall. There are new little spots here and there that are furiously itchy, but I am hopeful that it is the death throes. *fingers tightly crossed*

 

Squirmy, thank you for sharing the progress of your healing. And mostly, I am so glad to hear that you are healing! This is the kind of stuff I came here for - real, 1st person knowledge and experience. The doctors are so unaware of this thing it's incredible! But I feel like I am about to have a rebirth, of sorts - who knows what kind of minor annoyances and afflictions may clear up or resolve in some way that I never thought possible? There are moments where it is kind of exciting, imagining fewer pimples, less PMS crap, healthier hair, less anxiety or unexplained periods of sadness/low energy, not to mention the possibility of no longer having the annoying digestive issues I've always had. None of them were so life disrupting (though the IBS got really bad for a few months during a stressful time in 2007), but they were uncomfortable: bloating, discomfort in the morning, difficulty eating in the morning, painful gas if I sat too long, diarrhea after particularly salty or fatty meals...all these things I just thought of as part of who I was and learned to live with them.

 

Prickly, I had a dream the other night where I was hysterically pleading with my new, arrogant doctor and telling him to please just believe me, that this is an autoimmune thing. I woke and realized that they are approaching this as though it is a dermatological issue and it's not - it's autoimmune. I have accepted that I am an autoimmune patient and I am focusing all my attention on what I need to do to properly take care of myself. This is my job now. (I have not been able to work - I am self employed and my job is physical. I gave myself the time off, as hard and scary as that was. I've worked so hard to build the business and I am just going to have to trust that I will be able to rebuild it when I am able to get back.)

 

So a few more questions have come to mind, for you two, or for anyone to answer:

 

- RE: adrenal support. Is there anything I can do by myself to support them, until I find a new and compatible doctor? Maybe this is something my naturopath can help with? Like I said, I am eating really well, and I am also taking naps as needed, whenever I am tired. I am delegating stressful things to family members and my S.O. and I am meditating.

 

- For Prickly and anyone else who has done the low iodine diet: how long did you do it for? I am all in for the long haul, but I just don't know how long after the rash heals in a significant way that I can reintroduce some iodine-rich foods. How did you deal with the reintroduction?

 

- I was prescribed Clabatizol and I really do not want to use it. Again, I feel like they are treating this dermatologically, and doing nothing for the autoimmune treatment. That being said, if one of you tells me that you have had good luck with it and that it was a relief, I might give it a try. But I am concerned that it will just make the rash come back with a vengeance next time or something

 

- How do you know if you are allergic to sulfa drugs? Is it one of those things where you have to try it and find out? *shudders*

 

- Any insight on how to deal with socializing around food would be welcome, too. This is something that has been worrying me for a while: the idea of going over to e friends' house or out to eat is slightly terrifying, so I am considering just eating beforehand or bringing my own food if invited to someone's house, and I probably just won't go out to eat for quite a while. I guess I can always go out for tea (herbal, no milk or sugar). I like being around people and Portland is such a food town, but I just do not feel that I can eat safely from restaurant kitchens. Is this something that worried you too? How did/do you deal with it? I have found the local GIG chapter and a couple of blogs about gluten free eating around town.

 

Ok, wow, so many words. Again, I cannot express how happy I am that I found this board. In just a few short days, you all have given me more info than several doctors and 52 dermatologists could in 7 months! (50 of those derms were from the Morphology Meeting that I was part of two weeks ago at the local teaching university. I had 50 students, residents and docs look at me and all of them were stumped and NONE of them felt that it was DH since the 5 biopsies and 1 blood test were negative.)


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#25 pricklypear1971

 
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Posted 14 July 2013 - 01:21 PM

The past two days have been really hard. The rash was the worst it's ever been and I was stressing about finding a new PCP. I was so annoyed with the guy they gave me, it was all-consuming. What an arrogant prick! But then trying to negotiate finding someone knew and hoping that they would listen to me, really listen and be open minded? It all felt so impossible, far away, too much. I cried so much on Friday that my eyes hurt and were puffy (My S.O. calls it blubberitis. Hehe. )

But slowly I worked through the fear and realize that I could stop this panicked tailspin. I have an excellent nautropath that I am working with and I will see her this week. I ordered the tests from Enterolabs and ahem, "processed" them today, and I am ordering thyroid tests from PersonaLabs. I am eating so incredibly well I want to high-five myself! Tons of fresh, organic veggies at every meal (it's the right time of year for it), fruit, especially blueberries and marion berries that my parents grow, duck and chicken egg whites (also organic, also grown by my family), and fresh meats, pastured and grass fed when possible, beef, pork, chicken, lamb. Despite the rash, the lack of sleep and the stress/anxiety, I feel great! Ha!

And - I don't want to jinx it - but it appears that the rash may be rounding the corner. A lot of areas are darker, either red or brown, and dried, some are scabby and flaky and considerably less itchy. Swelling is down, overall. There are new little spots here and there that are furiously itchy, but I am hopeful that it is the death throes. *fingers tightly crossed*

Squirmy, thank you for sharing the progress of your healing. And mostly, I am so glad to hear that you are healing! This is the kind of stuff I came here for - real, 1st person knowledge and experience. The doctors are so unaware of this thing it's incredible! But I feel like I am about to have a rebirth, of sorts - who knows what kind of minor annoyances and afflictions may clear up or resolve in some way that I never thought possible? There are moments where it is kind of exciting, imagining fewer pimples, less PMS crap, healthier hair, less anxiety or unexplained periods of sadness/low energy, not to mention the possibility of no longer having the annoying digestive issues I've always had. None of them were so life disrupting (though the IBS got really bad for a few months during a stressful time in 2007), but they were uncomfortable: bloating, discomfort in the morning, difficulty eating in the morning, painful gas if I sat too long, diarrhea after particularly salty or fatty meals...all these things I just thought of as part of who I was and learned to live with them.

Prickly, I had a dream the other night where I was hysterically pleading with my new, arrogant doctor and telling him to please just believe me, that this is an autoimmune thing. I woke and realized that they are approaching this as though it is a dermatological issue and it's not - it's autoimmune. I have accepted that I am an autoimmune patient and I am focusing all my attention on what I need to do to properly take care of myself. This is my job now. (I have not been able to work - I am self employed and my job is physical. I gave myself the time off, as hard and scary as that was. I've worked so hard to build the business and I am just going to have to trust that I will be able to rebuild it when I am able to get back.)

So a few more questions have come to mind, for you two, or for anyone to answer:

- RE: adrenal support. Is there anything I can do by myself to support them, until I find a new and compatible doctor? Maybe this is something my naturopath can help with? Like I said, I am eating really well, and I am also taking naps as needed, whenever I am tired. I am delegating stressful things to family members and my S.O. and I am meditating.

- For Prickly and anyone else who has done the low iodine diet: how long did you do it for? I am all in for the long haul, but I just don't know how long after the rash heals in a significant way that I can reintroduce some iodine-rich foods. How did you deal with the reintroduction?

- I was prescribed Clabatizol and I really do not want to use it. Again, I feel like they are treating this dermatologically, and doing nothing for the autoimmune treatment. That being said, if one of you tells me that you have had good luck with it and that it was a relief, I might give it a try. But I am concerned that it will just make the rash come back with a vengeance next time or something

- How do you know if you are allergic to sulfa drugs? Is it one of those things where you have to try it and find out? *shudders*

- Any insight on how to deal with socializing around food would be welcome, too. This is something that has been worrying me for a while: the idea of going over to e friends' house or out to eat is slightly terrifying, so I am considering just eating beforehand or bringing my own food if invited to someone's house, and I probably just won't go out to eat for quite a while. I guess I can always go out for tea (herbal, no milk or sugar). I like being around people and Portland is such a food town, but I just do not feel that I can eat safely from restaurant kitchens. Is this something that worried you too? How did/do you deal with it? I have found the local GIG chapter and a couple of blogs about gluten free eating around town.

Ok, wow, so many words. Again, I cannot express how happy I am that I found this board. In just a few short days, you all have given me more info than several doctors and 52 dermatologists could in 7 months! (50 of those derms were from the Morphology Meeting that I was part of two weeks ago at the local teaching university. I had 50 students, residents and docs look at me and all of them were stumped and NONE of them felt that it was DH since the 5 biopsies and 1 blood test were negative.)

1) I get swollen lymph nodes, flu-like feeling, and a very weird under the skin pinprick rash from sulfa drugs. But that's just me.

2) as far as adrenals go, I take Pure Encapsulations products:

DHEA 5 mg - 1 each morning
ADR Formula - ND told me 2 in morning, 1 early afternoon. I take 1 in the am now.

I take thyroid meds...

I am also on vitamin d, iron, multi vitamin, chromium and selenium (thyroid). I take digestive enzymes as needed (glutening/stomach upset) and XYMogenXP ProBio Max Plus DF probiotic as needed (should take it daily according to ND).

The adrenal and DHEA are in response to saliva testing and obvious adrenal issues because of thyroid and steroids.

I was hard-core low iodine 2 weeks. My rash healed and I stopped breaking out in 2 weeks. I started adding back high iodine foods at that point. Milk first, then skinless potatoes, then an occasional egg yolk along with an occasional high iodine veg like asparagus or seafood like shrimp. I was careful to not eat too much high iodine each day. It is cumulative. I did overdo it once, but my breakout was very minimal. The bumps were tiny and few in comparison.

It is not advised to eliminate iodine for too long - thyroid.

Right now, doing li, eating out is tough. You may be able to eek out a meal somewhere from a reputable restaurant that does gluten-free well. I just held off til I started adding iodine back and then only 1x per week.

In the interim, take your own food. Drink teas and coffees...crackers, whatever...or take a whole meal. We all approach this differently and awkwardly at first. You'll get better as you go. Friends will learn this is the new norm. Definitely seek out safe restaurants and try to meet friends there. If food isn't safe, eat before or take with and socialize. Don't drop your friends :).

Re:rash. Moisturize. A healing rash cracks and bleeds and hurts. Lotion 5x a day.

And a note on alcohol. It may be tempting to drink your social anxiety away with gluten-free cider or rum or tequila or wine...but be warned...most if us react very strongly (meaning we get shitfaced) immediately after going gluten-free. And following shitfaced we get deathly ill - vomiting, wanting to die kind of ill. Note: Gatorade is gluten free. I advise keeping it on hand of you decide to have more than two drinks.
  • 2
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#26 ItchyAbby

 
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Posted 14 July 2013 - 02:19 PM

Thank you Prickly!

 

Re: Low iodine. Would you explain a little more about what you mean by "hard core"? I have pored over the THYCA list of foods to avoid, and I have also looked at some other lists.  Some say to avoid rice, celery and bananas, some don't. Some say peeled potatoes are fine, some don't. I see that you only reintroduced peeled potatoes after your 2 week elimination, is that correct? I have been eating sweet potatoes and peeled potatoes occasionally, maybe every other or every third day. Was there a list that you followed or did you just figure it out on your own? Did you eat any grains or starches at all? Did you eat egg whites? Or maybe I am doing the right thing but just being impatient? :~)  I only really started LI a couple of days ago.

 

I definitely won't drop my friends! I am thinking I just need to invite them over to my house more. I do need them. This rash has been kind of isolating, because I just stay at home a lot, either because I am too uncomfortable, or too tired and I am not working so I don't even get that interaction anymore.

 

Re: alcohol: Thank you for the heads up! I have never tolerated it very well anyway, so I have just eliminated it for the time being. I also don't do coffee - the taste does not appeal to me and it hurts my stomach. (Maybe that's another side effect of this gluten enteropathy?) It is interesting that you brought this up though - it seems that I have gotten more sensitive to alcohol in the last few years (not that I was ever a heavy weight - I am a small person, only 5 feet tall). I attributed this to aging, but maybe it's because I reduced my gluten intake significantly 3.5 years ago. This is all so fascinating! (when it isn't majorly sucking balls, that is...)


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#27 pricklypear1971

 
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Posted 14 July 2013 - 04:29 PM

I followed the thyca diet. I ate rice in moderation. I was cool with dropping other grains...I probably ate corn/quinoa pasta a bit. I probably ate celery and legumes in moderation.

I added back milk first. Life without butter and half n half blew. Then ice cream (gelato), after eggs. I still hold a grudge against the world for the no milk and whole egg period.

You learn quickly what gets you. Egg yolks (I ate whites), carrageenan (seaweed), and potatoes all got me. Even peeled potatoes got me. IMaybe I'm a poor peeler??? Asparagus got me.. When I added back shrimp I only allowed myself 3. I thought I was going to die without shrimp.

If I ever eat another egg white it'll be because I'm being tortured. I learned to hate egg whites.

No new breakouts = huge progress. Even reduced breakouts = huge progress. If you're healing you're doing the right things.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#28 ItchyAbby

 
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Posted 14 July 2013 - 05:08 PM

I followed the thyca diet. I ate rice in moderation. I was cool with dropping other grains...I probably ate corn/quinoa pasta a bit. I probably ate celery and legumes in moderation.

I added back milk first. Life without butter and half n half blew. Then ice cream (gelato), after eggs. I still hold a grudge against the world for the no milk and whole egg period.

You learn quickly what gets you. Egg yolks (I ate whites), carrageenan (seaweed), and potatoes all got me. Even peeled potatoes got me. IMaybe I'm a poor peeler??? Asparagus got me.. When I added back shrimp I only allowed myself 3. I thought I was going to die without shrimp.

If I ever eat another egg white it'll be because I'm being tortured. I learned to hate egg whites.

No new breakouts = huge progress. Even reduced breakouts = huge progress. If you're healing you're doing the right things.

I hear ya on begrudging the lack of milk and eggs. So do you eat eggs at all now? I love eggs and the idea of never being able to eat a creamy duck egg yolk again is sad. I will probably introduce ice cream first, though. I will miss that the most! And salmon - the way you feel about shrimp is how I feel about salmon! (which I happen to love best when served with asparagus. ARGH!)

 

Ok, so I think I will cut out potatoes for a bit (Did you eat sweet potatoes at all? Are they a problem for you? I don't see them on the THYCA list). Maybe I will just go full Paleo for a month (Minus the fish, of course) reintroducing unsalted butter at two weeks and egg yolks at three weeks. Hmm. Alright, I am kind of enjoying this culinary challenge (I am sure in a week I will be back here, whining about my stupid restrictive diet!)

 

I can do this. I have to do this.

 

One more question for you Prickly and anyone else who wants to chime in: What is your favorite lotion/moisturizer to use? I have seen a lot of people here recommend Vanicream and some say Cetaphil. I tend to not like the way petroleum-based moisturizers keep the heat in when I put them on the rash. Does anyone else have this problem? I have been using Extra Virgin Olive OIl. Before that I was using sunflower oil and before that Coconut oil. My skin still gets dry and flaky but does not crack and bleed at all - like I said, I REALLY try not to scratch the rash and I think that helps.


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#29 squirmingitch

 
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Posted 14 July 2013 - 07:19 PM

I'm sorry I haven't had a chance to even check the site today until now. I've been so snowed under with stuff!!!! We recently bought a house & moved in & we are trying to sell our old house & talking to the realtor today about a showing to a client & strategics, strategics, strategics discussions etc......

And tomorrow promises to be just about as bad.

 

I will get back to you on your questions as they pertain to what I have experienced & am eating etc... asap.

 

A couple quick things & then I'm off to bed.

 

Sweet potatoes are a okay as far as iodine is concerned so eat to your hearts content. I deeply peel white potatoes, like peel it & then have another go round at it.

 

Soy, most of us (celiacs in general) can't tolerate soy but it is high iodine so cut it.

 

I find moisturizers do the same to me as to holding in the heat but I use the one Vaseline I posted above. However, when I had big, bad, bad, baaaaaddddd lesions I coated with Vaseline thickly & was glad I had it. Prickly can relate to that.

 

If you can find a milk cow where they don't use iodine on the udders to prevent mastitis or a milk goat the same ~~~ someone who uses tea tree oil for cleaning the udders for the mastitis issue ~~~ You can try that. Most of the iodine in dairy comes from the iodine they use in the milking, cleaning the udders process. If you try that & don't get new blisters then you can eat cheese made from the same milk, also butter etc...... There is a certain amount of iodine in the milk from the feed they eat & the mineral blocks they lick but far less than the iodine that gets into the milk from the use of iodine in the cleaning process.

 

I never stopped eating rice!!!!

 

Don't eat oatmeal for a year. Your body may have a cross reactive reaction from it. And when you do try oats you have to make sure they are certified gluten free oats from untainted fields & harvested & processed on gluten free equipment.

 

I'm bushed! Night all.


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#30 pricklypear1971

 
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Posted 14 July 2013 - 08:39 PM

I hear ya on begrudging the lack of milk and eggs. So do you eat eggs at all now? I love eggs and the idea of never being able to eat a creamy duck egg yolk again is sad. I will probably introduce ice cream first, though. I will miss that the most! And salmon - the way you feel about shrimp is how I feel about salmon! (which I happen to love best when served with asparagus. ARGH!)

Ok, so I think I will cut out potatoes for a bit (Did you eat sweet potatoes at all? Are they a problem for you? I don't see them on the THYCA list). Maybe I will just go full Paleo for a month (Minus the fish, of course) reintroducing unsalted butter at two weeks and egg yolks at three weeks. Hmm. Alright, I am kind of enjoying this culinary challenge (I am sure in a week I will be back here, whining about my stupid restrictive diet!)

I can do this. I have to do this.

One more question for you Prickly and anyone else who wants to chime in: What is your favorite lotion/moisturizer to use? I have seen a lot of people here recommend Vanicream and some say Cetaphil. I tend to not like the way petroleum-based moisturizers keep the heat in when I put them on the rash. Does anyone else have this problem? I have been using Extra Virgin Olive OIl. Before that I was using sunflower oil and before that Coconut oil. My skin still gets dry and flaky but does not crack and bleed at all - like I said, I REALLY try not to scratch the rash and I think that helps.

I use Vanicream - the thick version. If I'm not mistaken, some Cetaphil contains gluten. My favorite moisturizers were Vanicream and Vaseline. Neither I would have touched with a ten foot pole prior to The Damn Rash, but most natural lotions or oils seemed to either contain gluten or make my rash burn. So there ya go.

I eat everything except gluten. It probably took about 5 months to fully reintegrate all iodine foods without freaking out and counting how many high iodine servings I had in one day.

Btw, I do recommend a crutch. A food crutch. I don't know when I started eating junior mints, but I do know they didn't cause an iodine rash flare. Is semi sweet chocolate on the list? I can't remember...whatever. Find a crutch. Use it. Eat the crap out of it and don't look back.

I never had a problem with milk, even without screening for iodine. Maybe I got lucky? Do be careful about sour creams, cream cheese, etc. - screen for CARAGEENAN. Guar him, locust gum ok. CARAGEENAN , no! CARAGEENAN is seaweed. Yeah.

I starred eating whole eggs every few days after the first month (that included baked goods). It helped to not feel deprived. But I had to decide what to eat as my iodine serving that day: eggs, potatoes, etc.

Eggs drove me nuts because of baking. I grew to hate egg whites, and baking with egg whites...yuck. I make ice cream without eggs, but gelato was out (obviously I'm addicted to dairy).

My one big bad flare was thanksgiving, btw. That was about 2 months into li. I somehow put together the most iodine rich menu conceivable then proceeded to eat it two days in a row. Yeah. Breakout. Luckily it was very mild - antibodies had fallen and I knew (unfortunately) to restrict iodine to put it out. Yeah, all of those leftovers staring at me. Ugh.

Just go slow and take notes about which foods make you flare or itch.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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