Another frustrated and confused DH sufferer

[Alaskaguy]

Hello All,

I am sorry if this post seems like it is rehashing topics that others have brought up here in the past, but frankly I am still very confused about my DH situation, which is still ongoing, if lessened, after being rigorously gluten-free for over 13 months now.

Just when I thought, a month or two ago, that MAYBE this lingering DH might finally be disappearing, I keep having almost daily flare-ups, some in the locations I had often had it before going gluten-free, others in totally new places, such as on the back of my hands, or even on the back of individual segments of my fingers.  There is nothing new in my diet that I can relate this to.  In addition, I have had seriously low energy over the past couple of months, which has seriously and negatively been impacting my life.

I have been avoiding all dairy products, and almost all seafood, for the past 5 or 6 months, just to avoid the iodine that I have read here can trigger DH flareups.  But iodine is an essential nutrient, so could I be avoiding it so successfully that I am imperiling my health by virtue of insufficient iodine intake?  Could I have reduced my iodine intake so much that I have made myself hypothyroidic? Nobody has ever addressed that factor.  And for just how long am I supposed to avoid high iodine-containing foods, the rest of my life? 

Another thing, I have utterly no idea how long it might take between (accidentally) ingesting any CC gluten and a DH outbreak.  Minutes, hours, days, weeks, months?  This makes trying to correlate outbreaks with the ingestion of possibly gluten-contaminated foods essentially impossible, and indeed I have been unable to ascertain ANY connections between the (gluten-free) foods I have been eating and subsequent DH outbreaks.   At least those of you who "only" have GI symptoms from celiac disease can pretty much know which foods are or do cause you problems --- I can only guess.

So, while my condition is improved since going gluten-free 13 1/2 months ago, it has not cleared up entirely, and over the past 6 or 8 months, at least, I feel that it has not further improved at all.  I am very discouraged at this point, as I have done everything conceivable to avoid gluten intake, yet I feel that after the improvement of the first few months, it's been rather ineffectual since then.

I should add that I prepare and cook virtually all of my own food, in my own gluten-free home kitchen, and have only eaten out a tiny handful of times since going gluten-free, and those times were either at a dedicated gluten-free restaurant, or at an oyster bar where I only ate (raw) oysters on the half-shell.  I do not go out to bars, so could not have been cc'ed by beer residue in drink glasses, either.

[cyclinglady]

I am sorry that you are still struggling despite your best efforts!  I do not have DH, but I from what I read from forum members, it can be maddening.  Hopefully, a few DH members will drop by soon to comment and encourage you.  

I can share that two years ago  I had a gluten exposure (unknown), a tooth infection, the flu and a cold all within a month.  My antibodies were up for both celiac and Hashimoto’s.  The daily hives I developed were awful.  Six months later, I was still struggling.  My GI wanted to do another endoscopy but I resisted.  Instead, I tried the Fasano diet (pretty much no processed foods at all and no grains except for rice).  The diet did not work.  Finally I had the repeat endoscopy and found healthy villi, but was diagnosed with my third autoimmune disorder, Autoimmune Gastritis.  (maybe the diet worked for my celiac disease).

I can not find much research, but my celiac antibodies were still very elevated when I had that endoscopy.  My GI and think that when one autoimmune (AI) issue is triggered, my other AI issues wack out.  My body (antibodies) seem to have an excellent memory.  Too bad my brain memory is not as good!  ?. So, your DH might be due to an additional AI issue that is brewing.  Just something to keep in mind. 

Consider that Fasano diet.  I know Squirming itch has been on it it for a few months and was successful.  She and Ravenwoodglass both have DH and you can find their posts in the DH section.  Both will tell you that it takes lots of time — over a year to heal.  Those IgA deposits in the skin take forever to work their way out.  Others will say to avoid even certified gluten-free foods at least for a few months.  

Here is the “Fasano” diet which is actually a diet developed by a team of researchers who were addressing non-responsive celiac disease patients who were commonly being considered as refractory which is really, really, rare.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Finally, you do need iodine in your diet.  But I would think that avoiding any food really high in iodine or added to processed foods would be enough.  But keep researching.  You do need it to live.  

Hang in there!  

 

[Alaskaguy]

Dear CL, thanks for your very considerate reply!

I am guessing that you could probably pick up on my growing frustration and discouragement with the lack of improvement with my DH over the past six months or so.  It's particularly frustrating in that, unlike most people, I am able to, and do, prepare virtually all my own food, from scratch, so my opportunities to have gotten "glutened" by eating out are not really a factor.  And I maintain a completely gluten-free kitchen and house, so there is no cross-contamination possible at home either.

One factor that MIGHT be coming into play here, though, that just occurred to me yesterday, is that I have been sporadically using purity-protocol gluten-free oats, purchased and sent directly from the grower in Wyoming. I have read in various places online that "most" people with celiac disease can handle purity-protocol oats just fine, but maybe I am one of those who cannot?  So I am going to cut out ALL oats from my diet for the next few months to check this theory out. 

I will admit that my DH situation is significantly better than it was before I went gluten-free 13 months ago (no more itching throughout the night, or waking up with bloody bedsheets from having scratched myself raw in four or five places), but it bothers me a lot that it seems I have had no noticeable improvement over the last six months or so --- just been on a plateau of lesser but still bothersome breakouts and itching.

[cyclinglady]

Ah......I do not consume any oats.  I guess I am too sensitive. My hubby does (he has been gluten-free 12 years before me) and I buy him only purity protocol oats.   In fact, except for holidays/events, I do not consume any grains.  It just works for me.  

I do know that DH sufferers tend to be super sensitive.  It is still recommended that newly diagnosed celiacs avoid oats for at least six months.  Some celiacs who were diagnosed long before all the gluten-free processed foods report that they do better by not eating gluten-free processed foods.  Sometimes the old advice is best.  

Report back and let us know if oats were the culprit for you.  

[Alaskaguy]

I will definitely let you all know about my experience with avoiding oats, CycylingLady.   I was also sporadically using teff flour and teff grain, but I am going to cut that out along with the oats.  So, I guess I will be avoiding ALL grains, except for rice.

[squirmingitch]

1 hour ago, Alaskaguy said:

I will definitely let you all know about my experience with avoiding oats, CycylingLady.   I was also sporadically using teff flour and teff grain, but I am going to cut that out along with the oats.  So, I guess I will be avoiding ALL grains, except for rice.

Ummmm YEAH. You may very well be one of those who can not tolerate oats at all, purity protocol or not. I am. Ravenwoodglass is too if I recall correctly. Many of us with dh can't do oats. Too bad too, as I love oats! I used to put oats on to cook, grab a box of raisins & throw them in there & by the time the oats were cooked, the raisins were nice & plump. Yum! OK, teff flour & teff grain.... problem is -- this is just me as I can't vouch for everyone --- since oats are not one of the top 8 allergens, then finding out when things have been cross contaminated with oats can be very difficult AND companies are not going to clean the lines after doing something with oats but before doing any other gluten-free goods. See? I called Bob's Red Mill & they use a combo of purity oats AND mechanically sorted oats. Since celiacs are supposed to be able to have oats, they don't worry about cc with oats. I called Udi's which is a gluten-free facility b/c I was reacting to their bread. Again, we come down to the issue with oats not being 1 of the top 8 allergens so lines aren't cleaned after oats. So where is your teff flour coming from? I'm going to bet Bob's Red Mill (BRM) even if the label says something else. BRM supplies a TON of the gluten-free manufacturers out there. Some gluten-free flour sellers re-label BRM flours with their own company name. Many companies will refuse to tell you if they get any of their flours used in making their products from BRM or someone else. It's a big secret. I guess they are afraid you're going to duplicate their product. At any rate, I just can't touch any of it. I found it's not worth driving yourself nuts trying to determine who doesn't have oats in their facility. Not to mention the fact that that would be rare indeed. 

I did the Fasano diet for a solid year. Yes, it worked. Iodine...... I know my limit now & can't go over it. Do you know there is iodine in dairy products? Milk, cheeses, sour cream, butter, cottage cheese, cream cheese. Egg yolks, potato skins, peanut skins, 

 

https://www.healthline.com/nutrition/iodine-rich-foods#section3

Dairy products are major sources of iodine, especially in American diets (12).

The amount of iodine in milk and dairy differs greatly based on the iodine content in the cattle feed and the use of iodine-containing disinfectants during milking (13).

A comprehensive study measured the iodine content in 18 different brands of milk sold in the Boston area. It found that all 18 brands had at least 88 mcg in 1 cup (8 ounces) of milk. Some brands even contained up to 168 mcg in one cup (14).

Based on these results, 1 cup of milk can provide 59–112% of the recommended daily amount of iodine.

Yogurt is also a good dairy source of iodine. One cup of plain yogurt provides approximately half of the daily recommended amount (6).

The amount of iodine in cheese varies depending on the type.

Cottage cheese is one of the best sources of iodine. One cup of cottage cheese provides 65 mcg, while one ounce of cheddar cheese provides about 12 mcg (15)

 

Eggs are also a good source of iodine.

For fewer than 100 calories, one whole egg provides a lean source of protein, healthy fats and a wide assortment of vitamins and minerals (23).

However, the majority of these nutrients, including iodine, come from the yolk (24).

Egg yolks are a good source of iodine because it is added to chicken feed. Yet since the content of iodine in chicken feed can vary, the amount found in eggs can also fluctuate (12, 24).

On average, one large egg contains 24 mcg of iodine, or 16% of the daily value (6, 24).

The majority of iodine in eggs is found in the yolk. On average, one large egg provides 16% of the daily recommended amount.

 

 

Lima beans are a good source of fiber, magnesium and folate, making them a heart-healthy choice (28).

They are also a relatively good vegetarian or vegan source of iodine.

Due to the variation of iodine in soil, irrigation water and fertilizers, the amount of iodine can vary in fruits and vegetables (6, 29).

However, on average, one cup of cooked lima bean contains 16 mcg of iodine, or 10% of the daily value (6).

Lima beans are high in fiber, magnesium, folate and iodine. One cup of cooked lima beans provides about 10% of the daily value of iodine.

 

Here is a chart stating how much iodine is in each food & the % it fulfills. It is from:

https://www.myfooddata.com/articles/natural-foods-high-in-iodine.php

[squirmingitch]

So really, it takes a lot for people to become iodine deficient in the US these days. It's kinda funny how we all freak out about getting enough iodine yet eat crap for food & never think another thought about how badly that is impacting our health. We are soooooooooo stuck on iodine. I think this comes (with us geezers) from our mothers who either went through the Great Depression or were born close enough to it. You see, around 1920 was when the whole iodine-goiter thing came to a head. You had "the dustbowl" of the country where the major concentration of iodine deficiency goiters occurred. Iodine occurs mostly in the top layers of the soil and in greater quantity the nearer you get to the sea. My mother would not buy anything but iodized salt and so that's all I ever bought too until dh. That's when I switched to plain salt. I still use plain salt.

As I stated earlier, I know where my threshold is & I stick to it unless I am willing to pay the price in the form of rash. 

Alaskaguy, I am now over 7 years gluten-free. I struggled like you. I could have written what you have written here. I know your frustration b/c I've been there, done that. I can't prove it with a doctor report but hindsight being 20/20, I know that I was celiac from at least pre-teen but at the time, I did not have dh. So basically at least 45 years those antibodies were getting deposited under my skin - just piling up. You could say I have a lot of years worth to get them out of my skin. Apparently there are some still there since when I overdo iodine, I get the rash. It's not anywhere as severe though as it used to be. Now, it happens & it might even go away before morning -- it won't itch continually either. 

I no longer eat any grains, not even rice. I do eat dried beans. Navy bean soup, homemade refried beans, stuff like that.

So my advice to you would be go on the Fasano diet for at least a few months along with limiting your iodine intake & ditch the oats for sure. 

 

[Alaskaguy]

Dear SquirmingItch,

I really have to thank you for that wealth of information you have posted here.  Some of that I already knew, but it is good to both review it again, and to be able to read it all in one place (for those in the future who might reference this thread).

I had known about many if not most of the high-iodine foods for a while now, such as milk, white fish, and dried sea vegetables (in particular!).  I used to often used dried dulse (a red seaweed) in cooking, but I guess not any more, eh?

Like you, I cannot prove it now but I am sure that I was dealing with celiac disease for pretty much all of my life, as I did have GI symptoms all of my life --- routine and terrible constipation, with much cramping, straining and discomfort during bowel movements (the DH did not kick in until about 7 years ago). For most of my life, it was 'normal' for me to be on the toilet for 30 or 40 minutes at a time.  That seems to have gone away in the last year, though, while eating gluten-free.

It profoundly depresses me, though, to find out that I might have to avoid milk and yogurt and cottage cheese and halibut for YEARS to come, if not for the rest of my life.  Here I was thinking that maybe after one year, at most, I could start easing back into those foods.  I appreciate the information, but this situation is just becoming more and more depressing for me.  I thought it was bad enough to have to eliminate wheat and the other gluten-containing grains, but now to have to give up OATS, and even the teff, AND all those high-iodine foods like dairy and fish ---- it is honestly making me start to wonder, "Is it worth it anymore?"  (Trying to live like this, that is.)

I'm sorry that I cannot be more positive about all this, but cooking and food have been a big part of my life, and now having that all ripped away, AND while still facing dealing with this maddening itching and rashes for potentially many more years, leaves me feeling utterly depressed and defeated.  My dog seemed to be able to deal with eating the same gray slop day after day and year after year, but I just can't.

[Alaskaguy]

PS:  Regarding the teff, I had purchased it (the grain, which I have ground myself at home) directly from the grower and producer, Maskal Teff, in Idaho.  They do not have any kind of shared equipment or storage for the teff, and they test every batch to ensure that it is no higher than 10 ppm in gluten, so there is that at least. 

I can't say that I have made any connection between consuming teff and DH outbreaks, but that probably doesn't mean a whole lot, as I cannot really much definitively state that I have been able to make almost ANY connections between anything I have eaten (since going gluten-free) and DH outbreaks, since I still have no clear idea what kind of lag-time I am dealing with between possible gluten consumption and DH itching and rashes --- I'm guessing days, at least, making the determination of any possible connection between the two virtually impossible, as any number of other foods would of course also have been consumed in the interim.

[squirmingitch]

Hold on! I am so sorry! I gave you a misimpression. I drink milk & eat cheese & use butter so don't despair. I did give up dairy for quite a few months in the beginning but then I went back on dairy. I do think you should give it up for a couple months ONLY in order to let your system calm down.

I LOVE milk. I have milk every single day, twice if not 3 times per day. I have cheese almost every single day. I use very little butter b/c I've pretty much replaced it with olive oil and b/c butter seems to be so to speak "concentrated" milk, thus containing more iodine per oz. if you will. I got used to unbuttered veggies too. They taste great w/o butter! If I have a lot of butter then I have to give up some of my milk that day -- it's a trade off. So don't think you will have to give up dairy for the rest of your life. I daresay eventually you will be able to eat halibut but you may or may not have to do a day or 2 trade off with other iodine foods.

I am so sorry I did not make this clear!!!!!

You will find your threshold and your threshold will change over time so that you can tolerate more & more as time goes by. 

I only now, after all these years am able to make connections to dh & foods I consume. One thing is that there's not a chance in hell I'm getting any gluten in the tiniest amount so it now comes down to iodine consumption & I can tell when I've crossed the line within about an hour ha ha but then it's too late as I can't "take it back". But like I said, it really is only a matter of a slight inconvenience now & maybe lasts an hour, maybe flares a few times in the following 24 hours. 

[squirmingitch]

A couple more thoughts.......

If you have been doing a lot of sea veggies, then that could well be your problem right there. When I was still eating processed foods, I could NOT eat anything that contained carrageenan or I would be miserable!

 

Another thing..... you mentioned "that grey slop" the dog eats. Is that gluten-free dog food? If not then you could be getting cc'd. Even if it is gluten-free; it's not like gluten-free human food. They don't test the dog food & I sincerely doubt they clean the lines at all. So you still would need to be ultra careful about washing up & no doggy kisses. Do you know there are about 5 dog food manufacturers in the US? They actually make it & put different company names/packaging on it. Seriously. I feed my dog raw. Not hard & you don't worry about gluten OR any kind of poison/recall. If you would like to know more about that then just ask.

[squirmingitch]

And yet another note. I eat eggs but I find I need to limit my consumption of them or do trade offs. I have learned to love egg whites - fried, in olive oil, with the edges getting crispy. I eat whole eggs but not as much as I used to.

 

I still think (my opinion) you should do Fasano & low iodine for a few months. Let everything calm down. Give it a rest. THEN begin adding back foods slowly, one at a time. You will be better able to assess how things are affecting you.

[Alaskaguy]

Thanks again Squirmingitch, for all your input and suggestions.  That was very gracious of you to offer.

Please note that I will continue this discussion, focusing on the Fasano Diet and the ramifications of it, in another thread.

[Alaskaguy]

Squirmingitch, in answer to some of your questions above,

1) Regarding the dog food, I was speaking only metaphorically there --- my last dog died two years ago, and I am not really around any other dogs, so there is no chance of contamination from that end;

2) I have totally stayed away from the sea vegetables since going gluten-free 13 months ago --- and it was one of your posts that I read here early last year that clued me in to the avoidance of iodine to alleviate DH.  So thank you for that!

3) As for eggs, I have been eating them, but certainly not every day --- I might eat three or four eggs in a week, including those used in cooking (but those will be effectively eliminated now that I will be avoiding all oats and teff, as I'd have nothing to add them to in baking).

4) At another time, I would be curious to ask you about how you make your dog food from scratch, as that is something I had never done with any of my own.

[squirmingitch]

I am so sorry to hear about the loss of your dog. I hope you will get another. 

When you do, feel free to ask me how to feed the raw. It's really pretty easy. 

So it doesn't seem that you go nuts on eggs, I wouldn't imagine you're getting a lot of iodine from them & like you said, if you cut the teff, you'll be eating even fewer eggs. 

 

[Alaskaguy]

32 minutes ago, squirmingitch said:

I am so sorry to hear about the loss of your dog. I hope you will get another. 

When you do, feel free to ask me how to feed the raw. It's really pretty easy. 

So it doesn't seem that you go nuts on eggs, I wouldn't imagine you're getting a lot of iodine from them & like you said, if you cut the teff, you'll be eating even fewer eggs. 

 

Squirmingitch, thanks for the condolences regarding my dog.  Jack died two years ago next week, and he was a remarkable, one-of-a-kind Malamute/Siberian Husky mix that I will never be able to replace.  My friends and acquaintances still talk about him, and I still miss him every single day.

No, I've never been a crazy egg-eater, and at least half of those that I have eaten were used as an ingredient, in baking or in something else, such as pancakes.  I had made some pretty good 100% teff flour pancakes, but that was still an occasional treat, maybe once every three or four weeks.  I had also made a very good banana bread using 100% oat flour, but the last time I did that was back in November, and of course I will not do that (at least for a good while) going forward.

[squirmingitch]

Jack was your heart dog. Sometimes we are fortunate enough to have more than 1 heart dog in our lifetime. I hope you will have another. We waited 5 years after our last & swear we will never wait that long again!

[Alaskaguy]

22 minutes ago, squirmingitch said:

Jack was your heart dog. Sometimes we are fortunate enough to have more than 1 heart dog in our lifetime. I hope you will have another. We waited 5 years after our last & swear we will never wait that long again!

Yes, I think you are correct about Jack and me.   It might sound horribly maudlin to write this, or to admit it, but sometimes I still almost tear up when I think about him (as I am doing right now).   I couldn't even think about getting another dog in the first year after he died, the pain (and memories) was just too strong.

But the funny thing was, EVERYONE who ever saw us together made the same observation and comment --- like "you two are such a perfect team!", or things like that.  I've had more than one dog before Jack to whom I was close, and they to me, but I consider myself lucky to have shared my life with him in particular.  And to top it all off, he was a rescue dog whom I adopted when he was already seven years old!  But from the first minute we met, he acted as if he had known and loved me forever.

[squirmingitch]

Yup, he was your heart dog. 

[cyclinglady]

I miss my ❤️dog....she was a lab.  The best lab in my entire extended family.  She too was a rescue.  When the kid goes off to college, we’ll get another.  ?

[Alaskaguy]

29 minutes ago, cyclinglady said:

I miss my ❤️dog....she was a lab.  The best lab in my entire extended family.  She too was a rescue.  When the kid goes off to college, we’ll get another.  ?

It can be so amazing to have a good dog in your life!  My heart still aches for my old dog Jack.  I now much more understand that line in the old song "Mr. Bojangles":

His dog up and died, he up and died                                                                                                          after 15 years he still grieves ....

[squirmingitch]

❤️? cyclinglady?

My hubby said, "Every day lived without a dog is a day not fully lived."

[Alaskaguy]

7 hours ago, squirmingitch said:

❤️? cyclinglady?

My hubby said, "Every day lived without a dog is a day not fully lived."

Indeed.

I feel sorry for those people who have never had pets, and who look down their noses at the very idea of having one.