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I Have So Many Questions
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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...)

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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.

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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.

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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.

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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.

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So, some areas seem to been healing up nicely, but my lower back is flaring really badly today. ARGH! So itchy. It's the hardest area for me to resist scratching for some reason. I am sitting against a huge ice pack right now. It was healing up and approaching the brown splotchy phase up until two days ago, having shed the majority of it's flakes and scabs, but now it's all lumpy and hivey (It seems to avoid my buttcrack. Lets hope that continues...). I also have one spot about the size of a nickel on my inner thigh where it meets my butt. This spot only showed up about a month ago and so far never spreads farther than a quarter, but man, it freaks me out. WAYYYY to close to my lady parts.

 

I am trying to be patient, trying so hard not to get discouraged when areas flare up. The overall trend seems to be improving, but I am so tired of it. It has just been flaring and spreading since the 28th of June. It has not spread to any areas that it hadn't spread to in the last flare, at the beginning of June, so maybe that's a good sign. *knocks on wood* Can you see that I am grasping at any little straw here?

 

I do have Good News, though! I sent off my specimen and cheek swab to Entero Labs this morning. (I know. The excitement never stops) But even better news! I found a new PCP that I am having a good gut feeling about her after reading her profile and I get to meet her Wednesday. This was such a relief. That was really stressing me out and I did not know how long I would have to wait to get in to see a new doc.

 

Squirmy - What?! You have a life obligations besides holding my hand through DH?! Unpossible!! :D (J/K of course) Selling AND buying AND moving all at once? I can only imagine how slammed you must be right now. Hang in there! And thank you for all the tips - I am going to hunt down a a dairy that does not use iodine. Maybe even a goat dairy if I can find it! I love goat milk and cheese. And good tip on double peeling potatoes - do you still do this or was that only when you reduced iodine?

 

Prickly - Alright, I am going to pick up some Vanicream and give it a go, especially now that the dry season is upon us. And I have one food crutch already! Blueberries! We grow them and have an amazing harvest this year. I eat as many as I want, all day long - they are so good! I love all fruit also, so that may be the thing that carries me through. But I have loved Junior mints in the past, especially if they've been in the freezer for a bit! That is a good point, though - there are so many restrictions right now that it can make me a little crazy/fearful/resentful. It's important to indulge! (safely of course) I could also see myself giving in to the call of CoconutBliss...

 

Carageenan is in everything! Blah! Do either of you eat other seaweeds or is all seaweed out for an extended time (possibly forever?) Sushi...?

 

I will not be baking for a while. I used to bake a lot, always gluten free so my SO could eat it. It was actually really fun experimenting with Gluten-Free baking and I look forward to getting back to that. But yeah, baking with egg whites only does not intrigue me that much.

 

Do either of you have dogs? Do I need to make sure my dog's food and supplements are gluten free, too?

 

I know I keep saying it, but thank you. Thank you so much. You two have given me so much useful information, support and hope. You have been so kind and generous and that means a lot.

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So, some areas seem to been healing up nicely, but my lower back is flaring really badly today. ARGH! So itchy. It's the hardest area for me to resist scratching for some reason. I am sitting against a huge ice pack right now. It was healing up and approaching the brown splotchy phase up until two days ago, having shed the majority of it's flakes and scabs, but now it's all lumpy and hivey (It seems to avoid my buttcrack. Lets hope that continues...). I also have one spot about the size of a nickel on my inner thigh where it meets my butt. This spot only showed up about a month ago and so far never spreads farther than a quarter, but man, it freaks me out. WAYYYY to close to my lady parts.

I am trying to be patient, trying so hard not to get discouraged when areas flare up. The overall trend seems to be improving, but I am so tired of it. It has just been flaring and spreading since the 28th of June. It has not spread to any areas that it hadn't spread to in the last flare, at the beginning of June, so maybe that's a good sign. *knocks on wood* Can you see that I am grasping at any little straw here?

I do have Good News, though! I sent off my specimen and cheek swab to Entero Labs this morning. (I know. The excitement never stops) But even better news! I found a new PCP that I am having a good gut feeling about her after reading her profile and I get to meet her Wednesday. This was such a relief. That was really stressing me out and I did not know how long I would have to wait to get in to see a new doc.

Squirmy - What?! You have a life obligations besides holding my hand through DH?! Unpossible!! :D (J/K of course) Selling AND buying AND moving all at once? I can only imagine how slammed you must be right now. Hang in there! And thank you for all the tips - I am going to hunt down a a dairy that does not use iodine. Maybe even a goat dairy if I can find it! I love goat milk and cheese. And good tip on double peeling potatoes - do you still do this or was that only when you reduced iodine?

Prickly - Alright, I am going to pick up some Vanicream and give it a go, especially now that the dry season is upon us. And I have one food crutch already! Blueberries! We grow them and have an amazing harvest this year. I eat as many as I want, all day long - they are so good! I love all fruit also, so that may be the thing that carries me through. But I have loved Junior mints in the past, especially if they've been in the freezer for a bit! That is a good point, though - there are so many restrictions right now that it can make me a little crazy/fearful/resentful. It's important to indulge! (safely of course) I could also see myself giving in to the call of CoconutBliss...

Carageenan is in everything! Blah! Do either of you eat other seaweeds or is all seaweed out for an extended time (possibly forever?) Sushi...?

I will not be baking for a while. I used to bake a lot, always gluten free so my SO could eat it. It was actually really fun experimenting with Gluten-Free baking and I look forward to getting back to that. But yeah, baking with egg whites only does not intrigue me that much.

Do either of you have dogs? Do I need to make sure my dog's food and supplements are gluten free, too?

I know I keep saying it, but thank you. Thank you so much. You two have given me so much useful information, support and hope. You have been so kind and generous and that means a lot.

Yes, I eat sushi and seaweed now without restriction. I eat everything except gluten.

I recommend pet food be gluten free. You play in it, dog eats it and drags it around, licks you...you get the pic.

If you are making progress, you're going the right direction. Learning gluten-free is a process - dont expect yourself to be perfect up front. Same with li. You'll figure out what gets you.

Gluten seems to be in everything. Just when you think you've weeded it all out, there it is again. And the li thing is a PITA. You'll learn what gets you...and remember, antibodies should fall and lessen the outbreaks.

There's always going to be the random outbreak, potentially for years. I get them from a virus. Weird, but true. Had one when I had been glutened 1x too many plus an intensive massage plus playing with thyroid meds - my body rebelled and said "rash!". Luckily each outbreak is less severe - keeps you straight and off gluten, considering the potential blow-up.

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PSST! I don't want to jinx it, but the rash looks soooo much better today - browning, less inflammation all around, scabbing and the itch has been relatively bearable. I am kind of giddy, but trying to be calm and realistic. The idea of possibly being able to sleep more than two hours at a stretch is too too exciting.

 

LI is challenging, Gluten free is less so, but still challenging (for me) but I will do ANYTHING to continue this healing.

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PSST! I don't want to jinx it, but the rash looks soooo much better today - browning, less inflammation all around, scabbing and the itch has been relatively bearable. I am kind of giddy, but trying to be calm and realistic. The idea of possibly being able to sleep more than two hours at a stretch is too too exciting.

LI is challenging, Gluten free is less so, but still challenging (for me) but I will do ANYTHING to continue this healing.

Ssshhhh....

I know how it feels to think you're tempting fate to talk about it.

There was a point where I started addressing the rash like a person with a complete asshat personality.... When I had success with the low iodine addition to the gluten-free I felt like I had Asshat by the neck, and I smiled. It was so nice to KNOW.

No testing, no doctor signing off on Celiac...but my derm had insisted it was autoimmune. And when I squashed it going li, and I told him, he didn't argue. He'd suspected DH but when I didn't link it to foods (after he asked repeatedly) he put it on the back burner. Mine also looked different when I was on steroids and using steroid creams and on strong antihistamines. He never saw it in its "full glory". Anyway, I sincerely hope you've turned that corner.

I will warn you it gets scary when you start reintroducing iodine. Just go slowly and don't lose hope if you flare. Just back off the iodine...less frequent, lower volume, a different food. You may react strongly to one iodine rich source compared to the others.

I hope you have a good night. Moisturize like crazy, and keep up the ice packs.

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Things still seem to be improving but it's weird - each area will have browned completely and be drying up nicely and then have a small reflare. Every few days it's a new area, so as one dies down another  is just starting. Two days ago, it was the right side path on my tummy. That calmed down by yesterday. This morning I woke up with a few bumps on my left lat which had been nice and calm for about 5 days. WTH? So, I am trying to take heart in that these flares are not spreading to new areas, and not as bad as the original flares (no blisters, some hive-like clusters, but much less inflamed, and they clear up faster). It's so tiresome, though, and makes me paranoid, like around every corner I think I am turning there is more hell lurking there for me to go through. The last time it cleared up, it all kind of happened at once, with a few hot spots here and there that lingered but went away. I wish it would happen like that again. I would like a few more non-itchy days.

 

Been "officially" LI since Monday, then accidentally ingested some homemade ghee last night at my mom's. *sigh* Eating is such a minefield right now. It's like there's all this poison out there just trying to find it's way into my mouth. Could that ghee be why my lat is flaring up this morning? That seems too soon...

 

Some more questions for you:

- How many days after eating something "contaminated" (either with iodine or gluten) do you notice the rash flaring up? (Or is that even relevant during the healing phase?) I seemed to notice, though my food journaling, that it was about 3 days after eating gluten that I would first notice a few bumps. But now that I am gluten free, I don't know how that works - this flare started a a few bumps on June 28th - about 4 days after my big seafood fest - spread all over my torso and seemed to peak last week and is still having these small reflares. That's three weeks.

- Prickly, when you say it took you about two weeks on LI for the rash to go away, how did you know it was "gone"? Or did you?

- I am getting a new toaster. I am thinking about getting a new colander and cutting boards. Even though my kitchen has been gluten free for 3.5 years, these things were used before that too. Maybe I should deep clean the kitchen? You know, pull everything out and vacuum the cabinets, under the stove, run everything through the dishwasher?

- Oh, also for Prickly: when you say you get outbreaks from a virus, do you mean a specific virus, or just anytime you get a cold/virus? I may have gotten a stomach bug from my darling 5 year old nephew. I saw him on Tuesday, he had a high fever and the runs on Wednesday, then my mom got it. Yesterday my tummy was upset all day (a little the day before too) and my throat and ear canal was achey. What a bummer, as yesterday was the least itchy day I'd had in a while. Today is slightly more itchy because of the new flare on my lat, but my tummy is better. Having a body is hard these days! I did have a nice massage on Thursday - the first in months! It was very gentle, not intensive, but maybe that is a factor here too. Goodness, this take a lot of detective work.

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Ok, practicing patience. The left lat that just flared up yesterday is already significantly less inflamed and itchy! It's a new thing to have them clear up so quickly. I usually freak out a little when something new flares because it means many days of discomfort and untold amounts of spreading. Patience. Patience. I am healing. I have been reluctant to say that, for fear that I would eat my words. But I will say it: I am healing. Relief.

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Things still seem to be improving but it's weird - each area will have browned completely and be drying up nicely and then have a small reflare. Every few days it's a new area, so as one dies down another is just starting. Two days ago, it was the right side path on my tummy. That calmed down by yesterday. This morning I woke up with a few bumps on my left lat which had been nice and calm for about 5 days. WTH? So, I am trying to take heart in that these flares are not spreading to new areas, and not as bad as the original flares (no blisters, some hive-like clusters, but much less inflamed, and they clear up faster). It's so tiresome, though, and makes me paranoid, like around every corner I think I am turning there is more hell lurking there for me to go through. The last time it cleared up, it all kind of happened at once, with a few hot spots here and there that lingered but went away. I wish it would happen like that again. I would like a few more non-itchy days.

Been "officially" LI since Monday, then accidentally ingested some homemade ghee last night at my mom's. *sigh* Eating is such a minefield right now. It's like there's all this poison out there just trying to find it's way into my mouth. Could that ghee be why my lat is flaring up this morning? That seems too soon...

Some more questions for you:

- How many days after eating something "contaminated" (either with iodine or gluten) do you notice the rash flaring up? (Or is that even relevant during the healing phase?) I seemed to notice, though my food journaling, that it was about 3 days after eating gluten that I would first notice a few bumps. But now that I am gluten free, I don't know how that works - this flare started a a few bumps on June 28th - about 4 days after my big seafood fest - spread all over my torso and seemed to peak last week and is still having these small reflares. That's three weeks.

- Prickly, when you say it took you about two weeks on LI for the rash to go away, how did you know it was "gone"? Or did you?

- I am getting a new toaster. I am thinking about getting a new colander and cutting boards. Even though my kitchen has been gluten free for 3.5 years, these things were used before that too. Maybe I should deep clean the kitchen? You know, pull everything out and vacuum the cabinets, under the stove, run everything through the dishwasher?

- Oh, also for Prickly: when you say you get outbreaks from a virus, do you mean a specific virus, or just anytime you get a cold/virus? I may have gotten a stomach bug from my darling 5 year old nephew. I saw him on Tuesday, he had a high fever and the runs on Wednesday, then my mom got it. Yesterday my tummy was upset all day (a little the day before too) and my throat and ear canal was achey. What a bummer, as yesterday was the least itchy day I'd had in a while. Today is slightly more itchy because of the new flare on my lat, but my tummy is better. Having a body is hard these days! I did have a nice massage on Thursday - the first in months! It was very gentle, not intensive, but maybe that is a factor here too. Goodness, this take a lot of detective work.

I was not reactive to glutenings, and I'm still not (knock on wood).

I started healing immediately after going li. In two weeks my skin was healed - no new spots and scabs had fallen off.

When I'd get too much iodine, post healing...like at thanksgiving, it took 2 or so days to flare. Iodine is cumulative for me.

I get a flare from flu or cold viruses. I think I got it from a stomach bug. Sometimes I swear the rash precedes the worst of the virus.

But this is ME. You are YOU.

If there's progress, there's progress.

I'd worry more about crumbs (utensil drawer. Ick). They certainly got me at my parents (2 week visit). I cleaned my oven toaster and all was fine (still using it).

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Hi all,

I have been dealing with a horrendous rash that may be DH, but getting a diagnosis has been frustratingly elusive. I know you cannot diagnose me, but I figured it could not hurt to tell my story and see what thoughts you all have. It started 3.5 years ago as a few itchy spots under my right breast. They came and went for about a year and then a few similarly itchy spots showed up on my left sideboob (for lack of a better term). This went on for the next 3 years, coming and going, annoying and itchy but not a huge concern. My doctors told me it was probably fungal and that I should wash my running bras in hot water. I tried antifungal creams and they did not seem to work. Still it would go away, sometimes for months at a time, and come back, always in the exact same spot, then with a few more added spots nearby.

 

Fast forward to this last winter, when it started spreading rapidly and to new areas: a few spots showed up on each flank at waist level, and the original sideboob/underboob spots spread into each armpit and some spots showed up on my lower back/sacrum. These were clusters of red dots, looking kind of like pimples. The itch was out of control - it seemed disproportionate to the size of the spots.

 

And it just kept spreading over the next 7 months until now. I am in the middle of a flare up, and am covered from armpits to waist, in hive-like, flat topped clusters with some clear fluid filled blisters thrown in here and there. It always starts as a little pimple-like red spot that within 24 hours will reveal itself as the hive-like cluster, spreading rapidly and frighteningly. The craziest thing is how symmetrical it is! If it shows up on one side, I can be assured that the other side will flare up within a couple of days. My torso looks like an angry red Rorschach test. It's on my tummy, down both sides from my armpits to waistline and across my lower back.

 

So, I have had 5 punch biopsies, several blood tests (including TTG), a patch test and all have been inconclusive. The biopsies have come back with the same thing: Spongiotic dermatitis (which the docs interpret as allergic contact dermatitis). The first three biopsies were all done within the rash, the last two were done with at least one next to the rash site and looked at with direct immunoflorescence.

 

By the time this last biopsy was done, I had been gluten free for 12 days. I had read about DH and was desperate for an answer and went completely gluten free. This was not that hard since my Significant Other is gluten intolerant, so I don't bring gluten into the house since it's just easier to eat what he can eat. There were a few things I needed to weed out - mainly older condiments, like hoisin sauce. Before deciding to go gluten free, I would only eat gluten-containing items if I went out with a friend, or drove by a bakery - this wold happen, at most once or twice a week. Then I would goo weeks or even months without eating gluten. The last day that I ate gluten was May 30 of this year. The last biopsy - the one done correctly for DH - was done on June 11 of this year, but I now realize it may have been all for naught, as I had been gluten free for 11 days at that point. June 8th and 9th were the worst flare-ups yet, when it it spread to my tummy for the first time. By the time June 11th rolled around, it was looking marginally better (drier, darker red, less itchy). And it continued to improve dramatically until June 28th. Such relief! My skin sloughed and was smooth, with lots of browning spots whereever the rash had been.

 

Then on June 28th a few dots showed up on my tummy and it started all over again. Desperate, I went back to the internet for answers (not always a great idea, but this forum has been more informative than any of my doctors and derms). I read about Iodine and was dismayed. I had been taking cod liver oil daily from April onward. What's more, from June 20th - 25th I had been at the coast for my 37th birthday and feasted on fish and oysters several nights. Maybe that was the cause of the reflare? The last time I ate something that was iodine rich was last Saturday, July 10th -  few bites of salmon, before I realized what I was eating. Gah!

 

Sheesh. I am going on and on. But I have so much to ask you all. My doctors are stumped. They have ruled out DH, because they feel that it should be gone if I am truly gluten free. I mention the iodine connection and get blank stares. They are talking about prednisone and immunosuppressants, and I do not want those. I want answers!

 

Everything I've read about DH says that it can take quite a while to clear. I don't know what that means. Does that mean that one can keep having flare ups, even if they are gluten and iodine free?

 

I am ordering Panel B from EnteroLabs. My doctors are hesitant to do a gene test, since they feel we have ruled out DH. I still feel that DH is the most likey candidate. I am asking for a referral to an Immunologist. Are there any other avenues that you all would suggest I explore?

 

What I have done thus far:

- Changed out all my underwear and undershirts for unbleached, undyed, organic cotton replacements. This is the only thing that I wear next to my skin.

- Got rid of my running bras (Not that I have been running since I have been so uncomfortable)

- Changed out my laundry detergent for Charlie's Laundry soap and rinse everything twice

- Got rid of shampoo and conditioner. I now wash with baking soda and rinse with apple cider vinegar. I do this over the sink, not in the shower.

- I rarely use soap now, mostly just water. If I do use soap it's Dr Bronner's Baby Mild

- Got rid of all lotions. If I need to moisturize, I use either olive oil, coconut oil or sunflower oil.

- I wash my face with water most days. I will use a little baking soda in water if I need to exfoliate, and dab a littel sunflower oil on to moisturize.

- I eat only at home, or at my mom's house. I feel fairly confident that my home is gluten free. My mom only cooks gluten free stuff when I am over there, but my parents do still eat bread. I never use their toaster.

- I am eating only fresh organic fruits and vegetables many of which I grow myself, pasture raised/grass fed meats, home grown duck and chicken eggs (whites only) nuts, some rice and potatoes.

- I take a B-complex, Calcium/Magnesium/Vit D, and a magnesium/L-theanine mix. All say they are gluten free

- I am also taking a Probiotic called HLC Synbiotic Intensive. They say that they are gluten and casein free

- Xanax, occasionally. .25mg. I started having panic attacks in April. :(

 

What am I missing?

 

I am sure there are things I am leaving out. I am so baffled and scared. 7 months ago I was one of the healthiest people I know. I still feel healthy underneath the rash, though I am often tired or sad. Here are some pictures: the first shows the symmetry on my tummy, and how angry red it is at it's worst; the second is a close-up of some of the blisters; the third shows my side and how it darkens and scabs over as it starts to heal, plus the brownish areas where the rash has cleared.

ecaa3bcd-d03b-47f9-8ec8-7c9bfdfea43c_zpsP1130412_zps49ebb77c.jpge6c2411f-8de4-4bf4-884a-d2f81313e8b4_zps

 It is amazing how all these rashes look alike.  My rash is just like yours but I am covered like a blanket of this.  My scalp is in horrendous condition too.  Down my legs, on the top of my feet.  I feel for you!  Miserable.  I tried taking Dapsone which evidently isn't the answer for me.

 

Have you asked or looked at Candida?  I recently saw a D.O. that felt I had systemic yeast infection.  I have no signs of a vaginal yeast but he said I had other symptoms.  The rash, desiring sweet fruit, foggy brain, gut issues, etc. He knew I was considered a DH patient.  A little radical but he ordered a 14 day script of Diflucan along with Garlic and oil of oreano each day.  If you look at Candida skin yeast . . . it looks the same as DH.  I was to have no sugar, low carbs and only organic chicken or beef.  Sad to report that did not cure my rash but . . . hey, it's another possible answer to these rashes.  Good Luck. . . BTW, when you post onto these pages, your photos will be online for anyone to see.  I have sent mine to Photo Bucket for privacy.  I found out because I was look online and thought . . . "That's me" which was a bit shocking!    :ph34r: 

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Just an update: My new physician is great. I like her a lot and feel that she is on my side (though she has a lot of catching up to do). I got my fasting blood work back and everything looks good, like really good. She wrote "Normal electrolytes, glucose, kidney and liver tests and very good cholesterol. Your thyroid and inflammatory markers are normal, and your Iron is actually high." So, on paper, I'm as healthy as  horse! Ha! And I'm still waiting on my genetic and stool tests.

 

The rash. Eh, well, it's not worse and still possibly improving somewhat. It's frustrating that as one area heals, another flares up. These flare-ups seem to be less severe, in that they fade faster and don't spread as widely. But, it's slow-going and I have now had a whole month of sleep- and life-disrupting itchies on at least some part of my torso. My stomach was completely smooth with the brown freckling for about 5 days, then I woke up this morning with one "pimple" on the right side. We'll see how much that spreads tomorrow, I guess.

 

I am mostly just trying to learn to live with it for now and not think about the future too much. I really want to say that the overall trend is improving but I also don't want to invest too much in that - I have been disappointed too many times. Instead I just say, it's not getting worse.

 

Thank you Lyn. I will ask my doc about Candida.

And thank you Prickly, for continuing to share your experience.

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I got my Enterolabs tests back!

Two key points that it showed:

"The level of intestinal anti-gliadin IgA antibody was elevated, indicative of active dietary gluten sensitivity" (My levels were 27 units, where the normal range is less than 10 units)

"Although you do not possess one of the HLA-DQB1 genes predisposing to celiac disease (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have one copy of a gene that predisposes to gluten sensitivity, in your case HLA-DQB1*0301" My interpretation is that I probably do not have celiac.

 

I am kind of ecstatic. This confirms what I suspected and you all believed. I am on the right track then and the rash continues to improve, with small reflares here and there of diminishing severity and spread.

 

Now, if only my family would get tested as well...

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I am not sure if anyone is still reading this topic, so I may be talking to myself here. Today was a rough day. The rash has re-flared and spread a bit, though no where near as bad as it was at it worst. This time it's on my lats, just below my armpits and on my lower back/upper butt crack (these are areas where it has always been before and kind of where it originally started). My flanks and tummy are still smooth and fading.

 

I have been low iodine for two and a half weeks now. I don't know what else I should be doing or if I am eating something I should not be. I look a the Thyca site and I seem to be doing fine, but then I look at other sites and blogs and see a whole host of other foods that people say should be avoided - namely, coconut, most nuts, celery, bananas, tomatoes... all of which I am eating. This is driving me a little crazy. I am food journaling obsessively but cannot seem to pinpoint a culprit for this latest outbreak, though I suspect I may be eating too many nuts and maybe too much meat (Thyca recommends no more than 5 oz per day?) I am just so frustrated and sick of this. I am trying so hard to be patient but I am scared that it is just going to keep getting worse and I will never be bale to live my life normally and comfortably again. Food shopping and eating is so daunting right now - every bite I take I wonder if this is going to be the thing that's going to make me miserable.

 

Sheesh, this is such and emotional roller coaster.

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Abby honey, I'm reading. I'm just so swamped right now. I feel your pain hon, I really do. What you are describing is exactly what I have been going through since Dec. 2011 when I went gluten-free. It gets better & then it flares. I have been & remain so pristine with my food to make sure I do not get the tiniest bit of gluten. BUT I HAVE gotten better!!!!!! I'm having another flare right now but it's not as bad as previous ones. Each time is not as bad. I did however, have a horrid, awful flare last Sept. which got worse & worse through the winter & it finally calmed down in the 3rd week of March. I was stressed to the max. house hunting, making offers, having 1 fall through at the last minute when we found the property was 3/4 of an acre smaller than advertised, 700+ s.f. smaller than stated & to boot the septic & drain field encroached on the neighbors property. We had to begin our search all over again. Stress affects my dh BIG TIME.

 

I have to go do dinner now but will try to get back to you afterward. 

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You hit the nail on the head when you say this is such an emotional roller coaster!!!!!!!!!!!!!!! It screws with your head as much as it screws with your skin. And you get better & then you get a flare & you wonder if this did it or if that did it or if somehow you got a molecule of gluten or, or, or, or, until you're insane which stresses you out & then you flare worse. Been there, done that. Even now sometimes I do that but it's rare b/c I have learned that this stuff has a life of it's own & as long as we're eating gluten-free & being very careful about it then it isn't what we're eating --- it's the rash being it's infuriating self. In addition to being gluten-free & low iodine, I ate low salicylate (sals) for 9 months b/c I thought sals were making things worse. Nah. I flared, I got better, I flared, I got better, I flared until 1 day after 9 months of such a limited diet I said, "Screw it! I'll eat sals & find out!!!" I ate sals & nothing bad happened to me; nothing that hadn't been happening all along so I have been eating sals since.

I certainly don't want to depress you but I need to tell you of some of the experiences of others who have been on here & no longer post. Some have gone 3 years but when I say that; they said they still get 1 or 2 blisters or lesions. Some have gone less than 2 years & been fine. Some have gone only months (lucky ducks!) & cleared up & been fine. I am now 20 months & I only wake once most nights itching but it's not that bone deep itch & I am able to go right back to sleep. Blessed sleep! There are nights when I don't wake at all. YAY! But I can tell at 20 months in that unless some miracle happens & this stuff leaves me overnight; I will be over 2 years & still dealing with this. Such is the way of it for some of us. I can say that it's been 5 months since I had that scratch right down to your bones itch. That's major progress! I now go for hours at a time without itching. There are days when I don't get a new blister or "bite". Lately it seems to have set up a real pattern (which was NOT the case until around April) where I seem to flare for 2 days & then start calming way down on the 3rd day & then the next day I will be really healing with no new places & I seem to go 3 days that way & then the flare again & so on & so forth running in 3 day increments.

It takes longer for some of us. I am 1 of those. But I can now see the end of the tunnel & there IS light. :)

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How are you doing Abby?

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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.

Hi All

 

I'm going to jump in here and offer my two cents worth.

 

Re lotions and creams:  I love Medline's Remedy Skin Repair Cream.  I found it when my mom was in hospice.

Made with Olivamine.  And the first ingredient is NOT water!  For itch I like Derma-e.  I am trying to stick to 

as many natural products as possible.  Those which I find help are: apple cider vinegar.  Saturate a cotton ball

and apply where needed.  I also use Emu Oil, Gator oil and of course pure coconut oil which I slather on after a shower.

Dr. Mercola (who is one of the original anti-wheat, gluten docs) has an organic, gluten-free, fragrance-free moisturizer.  Also good.  

You can go to his site on-line or try Amazon.

 

I am with you about the hot showers.  I have done the same when my back is covered and I just can't stand it.

It hurts so good!  

 

The Cetafil doesn't do much for me.

 

If you are going Paleo (I pretty much follow that diet with a few low-iodine tweaks) the "Practical Paleo" by Diane Sanfillippo has an entire section on auto-immune diets.

 

And although I am new to this site, I have been gluten-free since around 1990.  It took a little while, but I honestly

thought I was the first person to stand and cheer after my first  normal stool.  I know, a little TMI but that's what I 

am here for.  No one else I could ever share that with.  IBS gone.  I agree that the misdiagnosis of IBS is what

kept so many of enslaved to the tortures of Celiac.  IBS is a symptom. You are going to feel so much better in

all areas of your life.  Hair, skin, nails, teeth.  Hopefully, there hasn't been too much damage done by this demon.

 

For some reason I have this rash now.   I was either CC'd, glutenized, or it's not DH or I am simply a delicate hot-house flower!

 

I have found Pricklypear and Squirmingitch to be my new best friends.  SO helpful. And I understand your frustration.  Sometimes I get so tired of thinking about myself and my body. It can get to be an obsession. 

 

I have another question.  Has anyone tried UVB light treatment?  I know that heat is aggravating.  Particularly when accompanied with sweat.  So getting hot is not fun.  But a tanning bed is used for people with eczema and psoriasis and other skin issues.  Has anyone tried it for DH?  I have looked into it and I know they have beds that are specific to skin issues.  More filters, etc. Fans running the whole time to keep cool. One place I checked out said that 50% of their clients are there for skin problems.  Now I know that over exposure is a big no-no.  And I have the palest of skin.  Scandinavian descent, blond, never tan blah-blah-blah.  But they told me that the eczema people stay in the beds for no longer than 4-5 minutes and seems to work well.  I'd rather try that than the Dapsone.  Has anyone else tried this?

 

Thanks again to everyone involved on this site.

 

xoxoxo

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Hello, lovely people of DermHerpFo. Thank you so much for your thoughtful and kind responses. I have stayed away for a couple of days just trying to get my shit together. And I have been working hard to redirect my attention away from the rash as much as possible (which seems nearly impossible at times). I signed up for a dress sewing class, I have been knitting up a storm, and meditating in my backyard. I have been reading and cooking like crazy. And little by little, I have been going back to my work, with the help of my most darlingest, sweetheartiest significant other, who has a lighter workload during the summer. I hope to be able to exercise again in the near future. So, basically, I am just trying to learn to live with the rash, rather than let it dictate my living (emphasis on "trying" - some days are more successful than others).

 

Anyway, IT (the horrid rash) still ebbs and floes, but the overall trends still seems to be improving. GAH! I am afraid to even say that. Too many times over the last few months I have eaten those words and they are not delicious, AT ALL

 

My emotional health is slowly recovering, though I do wonder if it might take even longer than the rash to clear. Man, IT really messes with my head. IT has brought me to depths of despair that I never even knew existed. I become convinced that everyone is so sick of me and of hearing about my rash. I'M sick of hearing about my rash. The other day I decided that my SO would be much better off without me, that I am such a burden and just no fun to be around now. He gathered me up and hugged me and said he wasn't going anywhere. That man is a treasure. Things are starting to feel a little more "possible" these days, and I truly hope that continues.

 

I am working on not being afraid of food. That has been one of the saddest things about this illness - before this, I was a big foodie from a big foodie family. We talk about food all the time. As we finish one meal, we are planning the next. We grow food just so we can have the best and freshest. We have chickens and ducks and bees and are talking about getting goats. We plan travel itineraries around food. My parents traveled to Puerto Rico with me and they brought a small carry-on for clothes and a cooler full of cheese and meat to check, EACH. We are obsessed with food, you see. And I am currently obsessed with food but it has been in a completely different way - not the loving jumble of appreciation for taste, texture and togerherness, but out of fear that what I put in my mouth will make me miserable. The past week I have been working to reverse that some, even within the constraints of being Low-Iodine and gluten free. I made lamb and parsnip stew in the crockpot, roasted chicken with garlic cloves stuffed under the skin, carrot cardamom muffins, zucchini-cilantro soup, and pesto pesto pesto on everything (minus the parm, of course)

 

In a way it feels like I have been holding my breath for the last week, just waiting and watching and waiting some more. It really does seem to be getting better. I saw my physician yesterday and she was so pleased with how much better it looks than the last time she saw me three weeks ago. My SO said it looks so much better today when we were taking the daily rash pictures. So far, so good. I whisper to my skin sometimes "please. please keep healing"

 

The many permutations of this rash are fascinating. Just when I think I have figured out how it works, it changes. I am no longer getting the water blisters, just the red dots and sometimes hives. And they are no longer in big clusters, but more individual. And they do not stick around as long. But I have also not had a day without at least one itchy lump or bump in 6 weeks, whereas all spring it would flare and recede, flare and recede. So, I dunno. It's odd. I think it's getting better but sometimes I just wonder if I have gotten better at tolerating it. (I think I saw Simone say something similar)

 

Oh! and I've noticed a new thing to improve with being totally gluten free - or rather, my SO noticed it. He said this morning "You know, you don't snore anymore. " And we both surmised that it must have something to do with the inflammation calming down now that I am Gluten-Free. Cool, huh?

 

Squirmy - thank you for continuing to share your experience. You must know that it means so much to those of us who are newer at this to hear from someone who has been at it a little longer. You have given me so much information to work with and that is empowering. I do see a little tiny light at the end of the tunnel, and on my good days, I am running like hell toward it. :) The itch still makes me cry sometimes (though I haven't cried in a few days) but it hasn't make me want to die in a while. I am sleeping better, and haven't needed ice packs at night in about a week. I keep wondering how long I will have to do LI, but I am trying to just focus on the present. (I really really really miss cheese and butter, though)

 

Simone - You take the "cookers" too?! (That's what I call the hot showers) They are a life saver for me - they gave me at least 3 hours of relief at the worst of it, and lately even more. It's such an intense pleasure/pain! Then I moisturize afterwards with olive oil. Yes, I smell like salad dressing for a little bit, but it really has become my favorite moisturizer. :) And I agree - this forum, and most especially Squirmy and Prickly, have been so incredibly helpful and kind. I don't know what I would have done had I not found my way here. You and I MUST vow to help the next generation of DH folks when we are able, ok?

   Thank you for the cookbook rec - I will check it out! I have started introducing very small amounts of grains back, just for a bit of variety and to loosen the restrictions that are on me right now - so far just a tiny bit of rice and masa. But mostly, I am eating epic amounts of veggies, which makes for epic pooping. (I think it's safe to say that we are all obsessed with our bowel movements in here. Never TMI! Heh. )

 

Ok. I'm about to turn into a pumpkin. Good night all. I wish you deep, itch-free sleep. :)

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I'll never be able to find it now but I did see one thing that was a med document that said the UVB treatment actually worsened dh. But it was only the one thing & it was NOT a "study" with references etc... so I don't know how they decided that. 

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Hey Abby, sorry I wasn't around. If you need me just pm me!

Glad things are getting better. Dh is a weird combo of "one day at a time" and "reassess in two weeks". And sometimes it takes others telling you it looks better, or you act differently. It's all so hard to wrap your brain around.

It is "a thing" to rebuild your life after gluten/dh. Really. You aren't doing a little thing, here.

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Annnd, now it's flared up again. WTF?! I am NEVER saying it's getting better again. EVER. It really does seem like every time I do, it flares up.

 

You are so right, Prickly - it really is one day at a time and I need to look at it as a big picture rather than the individual moments. Overall it's still much better than it was at it's worst, in the beginning of June. And it's still better than it was at the end of June when I had my Iodine-overload flare up. But sheesh, it can really take the wind outta my sails. I had a really good day yesterday. Today all I want to do is sleep and shower. (I also took a 25mg hydroxyzine this morning and it made me super groggy - Next time I'll take a half dose.)

 

Blah.

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((((((((((((((((HUGS)))))))))))))))))))))))))

 

Yup, I speak in whispers too. And try not to say it's getting better. :P

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    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
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