Well, I did it again.

[icarumba]

Hello all. I've been rash free for about 7 years now, and thinking that maybe I could get away with eating gluten again, I really cheated during the holidays. Now I'm paying again. My history is I was diagnosed with DH about 10 years ago. I had the most miserable and terrible rash one could imagine. I took 13 months of a strict gluten free diet to finally clear up. It was by far the most miserable year of my 68 years I've lived. Then in 2015 I went to Italy, ate anything I wanted and again broke out once I got back. That time it took 2 months to clear up. And now, forgetting what that was like, I cheated a lot over the holidays when I got to be with my family again, stopped the last couple of years because of corona. So I had fun and ate with them and now have again broken out in the usual places for me about 2 weeks ago. I figure it will take about 2 months to clear again. I regret doing it, and learned a good lesson. I've also ordered some DoTerra Blue Rub again to help with the itch. It really helped last time and I hope it will again this time until it clears. I know what a miserable time it is for all of you just diagnosed and trying to navigate the whole ordeal. Just know that it eventually becomes easy to eat gluten free and you become an expert at it, and recognizing what you can and can't have. It's not always fun to not be able to eat like everyone else, but you accept it eventually. Praying for all of you and thank you for this forum! It's really helped me over the years!! 

[cristiana]

Hello icarumba... I've just looked at your profile and I see you've been travelling with us for a few years now.  Nice to hear from you again!

It isn't always easy following this diet, but well done for your honesty and for resolving to pick up the pieces and start again.   I must admit, I've taken great pains to avoid anything with gluten as a main ingredient since I was diagnosed, and even so, my TTG numbers have taken years to come down to normal levels.  But over Christmas someone gave the family a HUGE box of Thortons chocolates which here, in the UK, used to appear in the safe foods in the Coeliac UK Food and Drink Directory.  I don't know what has happened in the last few years but it seems things have changed and I noticed the box now has the label "May contain traces..." and yes, I'm afraid I ate a handful of those chocolates over Christmas.   

There wasn't an instant reaction, but these past few days I've been feeling off and I am now wondering if those were to blame.  So like you, I have now resolved to stay on the straight and narrow.  I do know that I eat far too much chocolate anyway so I am going to try extra hard to eat healthily for a good while, and of course to stay away from Thorntons forever (unless they become safe again...!)

I hope you feel much better soon!

Cristiana

Edited January 17, 2022 by cristiana

[icarumba]

Thanks Cristiana! Sometimes it feels like a curse having this disease, but I always tell myself it could be a lot worse. At least when we are clear and have been strict on our diet, life can be really good and we're able to feel and look good. I regret cheating on my diet this holiday season, and now I am paying the price. I guess after so many years of being gluten free and rash free, I thought that maybe it had gone away or something. WRONG! It's going to be with me forever I guess. Oh well, like I said, it could be worse! Good luck in your journey with this awful disease!

Steve

[cristiana]

Well, at least we can control this thing through diet.  Also, you never know, a treatment or cure might be round the corner.  I just feel that at my age I should have lost my sweet tooth by now and get so cross with myself for eating so much chocolate!

I've just bought a book on reducing blood sugar through diet, and also the Country Walking Magazine which in the UK challenges its readers every new year to walk 3 miles a day, roughly, to take them to 1,000 miles by the end of the year.  Both very inspiring!  Lots of helpful before and after stories.!

I have a packet of cookies and a bakewell tart to finish (only UK readers will probably know what that is) and after those have disappeared, I intend to have a bash at that diet.   I'm glad we've had this chat today - it's strengthened my resolve to try to get healthier in 2022.

[Bneill]

On 1/17/2022 at 11:56 AM, icarumba said:

Hello all. I've been rash free for about 7 years now, and thinking that maybe I could get away with eating gluten again, I really cheated during the holidays. Now I'm paying again. My history is I was diagnosed with DH about 10 years ago. I had the most miserable and terrible rash one could imagine. I took 13 months of a strict gluten free diet to finally clear up. It was by far the most miserable year of my 68 years I've lived. Then in 2015 I went to Italy, ate anything I wanted and again broke out once I got back. That time it took 2 months to clear up. And now, forgetting what that was like, I cheated a lot over the holidays when I got to be with my family again, stopped the last couple of years because of corona. So I had fun and ate with them and now have again broken out in the usual places for me about 2 weeks ago. I figure it will take about 2 months to clear again. I regret doing it, and learned a good lesson. I've also ordered some DoTerra Blue Rub again to help with the itch. It really helped last time and I hope it will again this time until it clears. I know what a miserable time it is for all of you just diagnosed and trying to navigate the whole ordeal. Just know that it eventually becomes easy to eat gluten free and you become an expert at it, and recognizing what you can and can't have. It's not always fun to not be able to eat like everyone else, but you accept it eventually. Praying for all of you and thank you for this forum! It's really helped me over the years!! 

thanks for sharing your experience, I'm new to this DH diagnosis and what gluten free means. I was diagnosed Dec 21, I'm interested in learning the behavior of DH as it heals. I have two questions if you or anyone can share light on them: Gluten Free is 20ppm they say, is 20 ppm per serving for a box of gluten-free crackers or a loaf of bread, or is it the whole box or the entire loaf?

Can you overeat gluten-free prepackaged products? This like most things is probably different for many people. Next question is, as the skin blisters or whelps heal is it common that smaller one still come and go during this healing? 

My last question, how do you submit a question on this forum? Do you select "start new topic" in this main topic such as this one?

thanks

[icarumba]

Hello, Bneill. As I understand 20ppm applies to any amount that you would eat, so the more you ate, the more you might be exposed. Personally, I don't think 20 ppm is not going to hurt you though as that is a very very small amount. As far as eating too much prepackaged gluten free food, I suppose you could if that's all you ate. I prefer to stick to totally gluten free foods like meats and cheeses and fruits and vegetables and the like. I do eat Canyon Bakehouse bread as I think it's the best and there's a good variety of breads they make, and also some snacks made by Glutino and others. As you go, you'll find what you like and don't like and it becomes second nature to eat gluten free. The other question you had about other blisters and whelps, yes definitely, they will come and go as you heal. Just as you think you've just about gotten through it, another section of blisters will pop up. I get them in all the typical DH places. My scalp, which seems to last the longest, elbows and knees, lower back and buttocks, and upper back. The first time was the worst, and I had it over most of my body at one time or another, and I thought I'd never heal, but finally after 13 months of gluten free eating, I was blister free. Hopefully this time will only last a couple of months since I wasn't fully eating gluten laden foods full time, just cheating on it now and then and during the holidays. I hope this helps. It will become easier and will become second nature. Good luck in your journey! 

[cristiana]

8 hours ago, Bneill said:

thanks for sharing your experience, I'm new to this DH diagnosis and what gluten free means. I was diagnosed Dec 21, I'm interested in learning the behavior of DH as it heals. I have two questions if you or anyone can share light on them: Gluten Free is 20ppm they say, is 20 ppm per serving for a box of gluten-free crackers or a loaf of bread, or is it the whole box or the entire loaf?

Can you overeat gluten-free prepackaged products? This like most things is probably different for many people. Next question is, as the skin blisters or whelps heal is it common that smaller one still come and go during this healing? 

My last question, how do you submit a question on this forum? Do you select "start new topic" in this main topic such as this one?

thanks

Hello Bneill

Good to have you on board - welcome to the forum.

The way I start new topics is I go to forums, then click on the topic area sub-forum I feel my post would best go under - perhaps in the case of your post above, this might be Dermatitis Herpetiformis, and then that takes you through to the Dermatitis Herpetiformis sub-forum where you would then click on the words START NEW TOPIC in the red box that you will see to the right of the screen.

I am smiling as I write this, because although a Moderator on this forum, I am the least technical one on board so probably the last person who should be advising you!  ☺️ So come back to us if there are issues with this...  

https://www.celiac.com/forums/

 

[Scott Adams]

15 hours ago, icarumba said:

Hello, Bneill. As I understand 20ppm applies to any amount that you would eat, so the more you ate, the more you might be exposed. Personally, I don't think 20 ppm is not going to hurt you though as that is a very very small amount. 

Welcome to the forum!

I would just like to mention that I think you might have a bit of a misunderstanding about the 20 ppm level allowed for foods using the term gluten-free on their label. These foods are not fortified up to that level, and most would normally not test positive for any gluten, and might have zero gluten. This is just the level that would trigger a food recall. No manufacturer wants to come close to this level at all, and if they are monitoring things and for example found 15 ppm in their product, they would do an extensive  look at all of the ingredients to find the source of contamination.

[icarumba]

37 minutes ago, Scott Adams said:

Welcome to the forum!

I would just like to mention that I think you might have a bit of a misunderstanding about the 20 ppm level allowed for foods using the term gluten-free on their label. These foods are not fortified up to that level, and most would normally not test positive for any gluten, and might have zero gluten. This is just the level that would trigger a food recall. No manufacturer wants to come close to this level at all, and if they are monitoring things and for example found 15 ppm in their product, they would do an extensive  look at all of the ingredients to find the source of contamination.

Yes, I understand that. I realize that the 20ppm is just the allowable amount below which it can be labeled gluten free. I believe Bneill was just wondering if one ate a prepackaged gluten free food that actually had near the 20ppm, if you could get exposed by eating too much of it. I don't know that answer, but I do know that 20ppm is so low that I imagine you'd have to eat a lot of the food to feel anything. I may not have explained myself very well in the previous post. Thank you for your response! 

[Scott Adams]

In Europe foods made with Codex wheat starch have been eaten for decades without issues, and it does contain at set level of gluten just below 20ppm. You can now buy product in the USA made from this, for example DiGiorno's gluten-free pizzas. This has been studied a lot, and the level in Europe was 200ppm back in the 90's, and at those low levels, even eating them daily, most recovered celiacs would not end up with elevated blood antibodies or villi damage.

For anyone curious about Codex wheat starch we've done many articles on it here:

https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/

[icarumba]

Thank you for the information and the link to the articles. Very interesting. I didn't know anything about Codex wheat starch. I suppose in the future I might try some of those products. Right now in the middle of a major rash outbreak I'm being very careful about ANY gluten I might ingest however. lol. I will read more about it. Thanks again! 

[knitty kitty]

10 hours ago, icarumba said:

Thank you for the information and the link to the articles. Very interesting. I didn't know anything about Codex wheat starch. I suppose in the future I might try some of those products. Right now in the middle of a major rash outbreak I'm being very careful about ANY gluten I might ingest however. lol. I will read more about it. Thanks again! 

Cutting down on foods that are high in iodine will help keep your DH from flaring so badly.

Instead of iodized salt, try pink Himalayan salt 

Avoid crustaceans, shellfish, seafood and kelp (nori).  They are all high in iodine.  

Avoid dairy and eggs, too.  These are high in iodine as well.

Niacin, Vitamin B3, will help calm down your flares, too.

Hope this helps! 

 

[icarumba]

Thank you!

[Scott Adams]

17 hours ago, icarumba said:

Thank you for the information and the link to the articles. Very interesting. I didn't know anything about Codex wheat starch. I suppose in the future I might try some of those products. Right now in the middle of a major rash outbreak I'm being very careful about ANY gluten I might ingest however. lol. I will read more about it. Thanks again! 

If you have DH I would not recommend the Codex wheat starch products...most people with DH are in the super sensitive category.

[Wheatwacked]

Growing up in the 60's a glass of milk and two slices of bread had about 300 mcg of iodine, but in the US iodine is rarely used today as a dough conditioner and with the increase of omega 6 in milk caused by feed additives to increase milk fat and volume in non-pasture fed cows, more people have negative reactions to milk and so avoid it. Dietary intake of iodine is half what it was 50 years ago. I believe that explains the increasing number of people being prescribed thyroid medications and the increase of cancer.

Iodine is needed for apoptosis of cancer cells.  Iodine intake reduced by 50% and cancer increased by 30%.

The RDA for iodine is 150 mcg. The safe upper limit is set at 1100 mcg. Kombu (Kelp) has 68 times the amount of iodine per gram as nori. Even one gram of Kombu is already more than double the safe upper limit and 10 grams seems to be a typical amount used per serving; a whopping 25,230 mcg of iodine per serving! 680 times the safe daily upper limit!

A sheet of Nori is usually 2 or 2.5 grams. Sushi is rolled in half sheets. The brand I use is One Organic because it is certified organic and even in California it does not require a warning for potential health hazard due to heavy metals as do other brands I have bought and discarded. I usually have 2 or 3 sheets with my morning coffee. That is 37 to 111 mcg per day. I perceive its effect on me as improved muscle tone starting in chest and shoulders, and I have more physical energy. I am basically sedentary so that is good.

Quote

Major differences between kombu and nori

We have briefly learned that kombu is a species of kelp, while nori is a species of seaweed... While kombu and nori are both sea vegetables, they have distinct nutrient profiles... What really sets kombu and nori apart, however, is their iodine content... Kombu has significantly more iodine than nori. The average iodine content in kombu is 2523 mcg per gram (1,682% of the RDI), while the average iodine content in nori is 37 mcg per gram (25% of the RDI).  https://veganfoundry.com/kombu-vs-nori-what-is-the-difference/

Quote

 "Overall, there was an increase in cancer incidence of almost 30% between 1973 and 2015."   https://www.naturalmedicinejournal.com/journal/2014-06/iodine-and-cancer

 

Quote

"The molecular effects of iodine as well as ongoing epidemiological evidence points to its probable role in prevention of cancers through its antioxidant, antiinflammatory, prodifferentiating, and proapoptotic effects. This is particularly evident with stomach and breast cancers but may be relevant for many other cancers that have yet to be substantially studied."   https://www.naturalmedicinejournal.com/journal/2014-06/iodine-and-cancer

 

 

Quote

Urinary iodine measurements from NHANES have been used since 1971 to monitor the iodine status of the U.S. population [31]. Since the inception of the NHANES monitoring program, urinary iodine measurements have shown that the general U.S. population is iodine sufficient. This is despite the fact that urinary iodine levels decreased by more than 50% between 1971–1974 and 1988–1994 [2,32]. Much of this decline was a result of decreased levels of iodine in milk due to the reduced use of iodine-containing feed supplements and iodophor sanitizing agents in the dairy industry [33], as well as the reduced use of iodate dough conditioners by commercial bakers.   https://ods.od.nih.gov/factsheets/Iodine-HealthProfessional/

 

[icarumba]

40 minutes ago, Scott Adams said:

If you have DH I would not recommend the Codex wheat starch products...most people with DH are in the super sensitive category.

Here's my take on DH, at least in my case. If I've been strict with my gluten-free diet for a long time, I believe my body rids itself of the antibodies that collect in the tiny blood vessels in the skin and then I'm able to cheat a little without getting a rash, but the more I cheat, the more they start to build up until finally I have a major outbreak and have to suffer the consequences until they clear enough for the rash to go away. I'm in that faze right now. I'll have to be strictly gluten-free until it goes away. It took me 13 months for that to happen in my initial outbreak, but only 2 months when I cheated quite a bit in Europe a few years later. Now I'm 3 weeks into this outbreak and after a year or so of being strickly gluten-free, I'll probably try the Codex wheat starch products once in a while. Hopefully, I'll be able to tolerate them. We'll see, I guess. I have no abdominal issues with gluten, as far as I know, just DH, so it's hard for me to determine if I've been glutened if it happens without me knowing about it until I go over the top. Once in a while if I get glutened, I'll get a couple of little blisters that go away in a week or so, but nothing major like now. But for now, it's strictly gluten-free for me however!

[Bneill]

thanks for sharing

[Bneill]

On 1/21/2022 at 8:57 PM, icarumba said:

Hello, Bneill. As I understand 20ppm applies to any amount that you would eat, so the more you ate, the more you might be exposed. Personally, I don't think 20 ppm is not going to hurt you though as that is a very very small amount. As far as eating too much prepackaged gluten free food, I suppose you could if that's all you ate. I prefer to stick to totally gluten free foods like meats and cheeses and fruits and vegetables and the like. I do eat Canyon Bakehouse bread as I think it's the best and there's a good variety of breads they make, and also some snacks made by Glutino and others. As you go, you'll find what you like and don't like and it becomes second nature to eat gluten free. The other question you had about other blisters and whelps, yes definitely, they will come and go as you heal. Just as you think you've just about gotten through it, another section of blisters will pop up. I get them in all the typical DH places. My scalp, which seems to last the longest, elbows and knees, lower back and buttocks, and upper back. The first time was the worst, and I had it over most of my body at one time or another, and I thought I'd never heal, but finally after 13 months of gluten free eating, I was blister free. Hopefully this time will only last a couple of months since I wasn't fully eating gluten laden foods full time, just cheating on it now and then and during the holidays. I hope this helps. It will become easier and will become second nature. Good luck in your journey! 

I appreciate your response, peoples experience very helpful

 

[Wheatwacked]

20 hours ago, icarumba said:

I'll probably try the Codex wheat starch products once in a while. Hopefully, I'll be able to tolerate them.

My opinion: Why bother? It's not like people who eat wheat are healthier and happier. Keep in mind that wheat has been shown to be addictive. I remember, but not when or where, a person in the wheat industry commenting proudly that wheat is more addictive than potato chips. (bet you can't just eat one)

[icarumba]

On 1/26/2022 at 8:34 AM, Wheatwacked said:

My opinion: Why bother? It's not like people who eat wheat are healthier and happier. Keep in mind that wheat has been shown to be addictive. I remember, but not when or where, a person in the wheat industry commenting proudly that wheat is more addictive than potato chips. (bet you can't just eat one)

Why bother? Well, because I miss eating things like real pizza, and thick, chewy, wonderful breads! I'm Italian with an Italian mother that use to bake breads from scratch when I was a child! I will try this pizza and see what happens. I have celiac disease which is an autoimmune reaction to gluten, not a wheat allergy, so why not try it? 20ppm is such a little amount of gluten that that is why it's considered gluten-free. A slice of regular bread is considered to be around 35,000ppm so I'm not really worried about 20ppm. It's equivalent to a few crumbs.  By the way, my rash is healing after exactly a month. I only have a little left on my elbows, thank God, and unfortunately quite a bit in my scalp. However, I'm hoping that I'm rash free in about 2 more weeks. What a relief!! It's such a curse, but maybe things will be fine in the long run. I found this to help visualize the amount of gluten in bread.

https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/#:~:text=Regular white wheat bread has,contain 3%2C515 milligrams of gluten.

[Wheatwacked]

5 hours ago, icarumba said:

because I miss eating things like real pizza

Fair enough.  

 

[Scott Adams]

There are really good thin crust GF pizzas at Costco, two in a package, and they don't use wheat starch. I will admit it though, my daughter who is also gluten-free is hooked on DiGiorno's gluten-free pizzas, and I eat this once in a while too, but we take AN-PEP enzymes beforehand, just in case. We've not had any issues, but one pizza I tested with a Nima Sensor did show that it contained gluten over ~20ppm. Again, these are very low levels, but sensitive people may want to avoid them. I will say that their pizzas are very good, and more like what I remember when I ate gluten.

[icarumba]

Hello all. Just an update to my original post. After three months, I'm finally at the end of the tunnel. My rash has pretty well cleared up again except for a little in the scalp still, which is always the last to go for me. What a relief! It's such an ordeal to go through, this rash from hell, when you have a flare up. Hopefully, I've learned my lesson and after a few years, will not forget what this is like and cheat on my diet again. This is the second flare up since my original rash years ago that took 13 months to clear up. Good luck to you all suffering from this awful disease and pray for a cure someday! Thank you all for helping me through this again!

[Scott Adams]

This is great news!

[Anniehall]

On 1/17/2022 at 10:56 AM, icarumba said:

Hello all. I've been rash free for about 7 years now, and thinking that maybe I could get away with eating gluten again, I really cheated during the holidays. Now I'm paying again. My history is I was diagnosed with DH about 10 years ago. I had the most miserable and terrible rash one could imagine. I took 13 months of a strict gluten free diet to finally clear up. It was by far the most miserable year of my 68 years I've lived. Then in 2015 I went to Italy, ate anything I wanted and again broke out once I got back. That time it took 2 months to clear up. And now, forgetting what that was like, I cheated a lot over the holidays when I got to be with my family again, stopped the last couple of years because of corona. So I had fun and ate with them and now have again broken out in the usual places for me about 2 weeks ago. I figure it will take about 2 months to clear again. I regret doing it, and learned a good lesson. I've also ordered some DoTerra Blue Rub again to help with the itch. It really helped last time and I hope it will again this time until it clears. I know what a miserable time it is for all of you just diagnosed and trying to navigate the whole ordeal. Just know that it eventually becomes easy to eat gluten free and you become an expert at it, and recognizing what you can and can't have. It's not always fun to not be able to eat like everyone else, but you accept it eventually. Praying for all of you and thank you for this forum! It's really helped me over the years!! 

Omg. I feel this. My folks came to visit and we went out to eat. I realized I hadn't been out to eat the entire year I lived here and then when We went out twice and I was exposed to gluten each time I remembered why I don't go out to eat. Home cooking is safer and really even if someone were to make something for me at home it's suspect because many people have no knowledge of what does and does not contain gluten and they don't read the ingredients label on the back of their food items.