Keep Getting more bumps 2 weeks after getting glutened

[ktyler44]

It's true that some have more symptoms and different symptoms than others.  But Celiac is Celiac, whether it's manifesting as GI symptoms or DH. The same risk for intestinal damage applies to all.  Also,  symptoms tend to change or vary within an individual.  I used to get bad GI symptoms.  Now I'm getting a DH reaction,  which I  didn't have before.  A friend of mine had DH for years but no GI symptoms,  but now she gets both. Some people get no symptoms at all but still have the intestinal damage. 

[squirmingitch]

13 hours ago, Ging said:

Okay, is that true for everyone?  I've read some differing info and this is where I get confused.  I thought the implication was that it varied from person to person.  Some with more symptoms, some with less, some having more gut damage, others having next to nothing but rash.  

Conversely, I've thought the implication in some articles was that you had little symptoms but were still having the effects without knowing it; this sounds like what you are saying.  

I'd be grateful to have this cleared up because it's at the heart of what I need to know so I can move forward in the right direction.  My GI doctor seems to think the DH means the disease is out of his purview.  I wondered if that was the case or I still needed the endoscopy and to start paying more attention to that aspect that I've somewhat ignored.  

Like you, I believe I've had some symptoms and had no idea prior to this diagnosis.  I'm wondering if I need to change my whole approach and thought process about this... .

First off, ktyler is correct in the above post.

Secondly, I want you to understand what I'm about to say is said calmly & only in an effort to help you understand. I am not yelling at you or criticizing you or being snarky ok?

As far as your 1st paragraph up there.....Even if one does not have dh; the symptoms & the damage varies from person to person. A "classic celiac" can have NO symptoms & yet have NO villi either - which means the damage is total & the symptoms are non existent. Your paragraph 2 is more correct excepting I wouldn't say the rash qualifies as having little symptoms.

Your GI doc is correct. You really don't need to have an endoscopy as you have a dyed in the wool dx of dh which is a dx of celiac. What is the treatment for celiac? A gluten free diet. Period. That's all folks. The only reason for you to have an endoscopy would be as a baseline but truly there is no need for one for you even in future unless you begin having GI symptoms. You don't even need a GI doc excepting if you're 50 or over & then people go to them to get the once every 10 years colonoscopy. Once one had been dx'd with celiac, traditional or dh, one does not need to see a GI doc (as long as you're diet compliant) unless they develop GI problems & then you would see a GI to find if you have something else going on. As far as any blood testing for diet compliance or vitamin/mineral deficiency, a regular doc can order those tests if you think you need them, unless your insurance says they will not pay for them if they are not ordered by a GI.

I think you're overthinking this. I think you need to stop googling. I think you're making this more complicated than it is. I think you're getting tangled up in your spurs. This is ALL said with love. Remember? I said that at the outset. 

While celiac disease is complicated; it is also not complicated at all. You don't need continuing care. You don't need to be checked every 6 months or year or 2 years. The solution to celiac disease is very, very simple ---- NO GLUTEN. That's the prescription and that's the only prescription. Celiac disease is not like having any other AI disease where you need continuing care such as MS, or arthritis or lupus or diabetes. Celiac just requires a gluten free diet. I think you need to step back & breathe, just breathe. Calm down. You're going to be okay. You don't need to keep picking at this like it was a scab.

[apprehensiveengineer]

20 hours ago, Ging said:

 

I do wonder what things will effect me like they do anyone with Celiac.  Iodine?  Do I need to be careful of that intake?  Or am I more 'typically' allergic and the results of my disease are going to be treated/behave in that manner - less concerns of malabsorption and the like since my intestine might be in significantly better shape.  (Must get an endoscopy to be sure at some point.)  It's all very nebulous and that makes it all very frustrating because so much of the time the answer is 'maybe' or 'don't know'.  Or at least that's what I've found so far.  The wealth of knowledge  on here is immense and I'm just scratching the surface.  Hope someone else responds.

 

I had an endoscopy and biopsy done once I was already gluten-free (for 2 years). It came back clean, but I was still experiencing minor GI symptoms, rash and was anemic (and not responding too well to the iron supplements I was taking) at the time.

Some people might be inclined to interpret the clean biopsy/endoscopy as meaning that my problems were unrelated to inadvertent gluten consumption. While that's always possible, it's worth noting that endoscopy has a limited resolution and is not validated for monitoring of gluten-free diet compliance - it is validated for diagnosis only, and only if the patient is consuming large amounts of gluten daily. Sure, if you have observable damage while on an allegedly gluten-free diet, then that means you need to do better - but a lack of observed damage doesn't necessarily mean you're all clear.

In my case, for example, I was still having iron issues, which would indicate some combination of reduced iron absorption in the small intestine/internal bleeding (both consequences of tissue damage). The endoscopy/biopsy had some value in that it told me there wasn't any other obvious explanation for my issues (eg. bacterial infection, cancer, damage from some other GI disease). Because of the limitations of endoscopy for monitoring relatively treatment compliant individuals, I was left to assume that my continued issues were to do with CC. I suppose that my assumption was correct, as implementing a Fasano-like diet fixed me up.

[Ging]

2 hours ago, squirmingitch said:

excepting I wouldn't say the rash qualifies as having little symptoms.

No!  I did not mean that - I meant amount.  One symptom versus the laundry list some people have been dealt.

I'm not bent out of shape about this or frantic.  I like to lay out all the thoughts/questions/info so that there's less back and forth, so no worries about needing to be calm.  I appreciate what you're saying and I'm not at all upset with your answer.  I think the problem I was sorting out was exactly that; sorting.  I'm only looking to educate myself and understand.  I suppose a barrage of questions might seem frantic, but it's curiousity.

When you first approach this disease and forums like this you get many, many different related topics and advice, not to mention anecdotal experiences and evidence.  As you said, the gluten free diet is the answer, but there is a lot to learn about the disease itself and I'm just starting.  Thank you again for taking the time to respond.  It's a big help.

[rejoiceathome]

On 8/11/2018 at 10:05 PM, squirmingitch said:

 For 7 years, I have been researching dh & I am a research freak. I have never found anything that explains why you can break out with dh, get it correctly biopsied & it comes up negative if you are gluten-free. Yes, the antibodies are there & that's why you break out -- why doesn't it show in a biopsy??? But I can tell you that happens ALL THE TIME. 

 

Thank you so much for this! 

Four years ago I went gluten-free after finally getting the blood work done on my own, due to a less than enthusiastic GP.  (It showed that my transglutaminase-3 igA was positive and it also showed reactivity to wheat igG and alpha & gamma gliadin igA . That was enough for me.)  Two years later, I  went to a dermatologist because I had experienced weird spontaneous blistering for the 3rd time that year. The dermatologist knew my medical history, specifically that I was currently following a gluten-free diet and had been, at that point, for two full years.  She did a biopsy to rule out "anything auto-immune related."

Anyway, the skin biopsy was performed correctly, or at least I have no reason to believe otherwise, since both lesional and perilesional areas were biopsied.  The comments from the lab read "There is no immunofluorescence identified to support a diagnosis of immunobullous disease or connective tissue disease. There is some fibrinogen deposition in a nonspecific pattern which I favor is secondary to vascular permeability and not evidence of true vasculitis.  Given the immunofluorescence findings I favor these lesions could be consistent with a bullous arthropod bite reaction or bullous drug reaction."   

So, the dermatologist told me I had been bitten by some sort of insect and that it was nothing to be concerned about as all other causes of the blisters had been ruled out.  She started me on a course of a variety of antibiotic ointments, etc., together with prednisone. I got no new blisters but it seemed to be taking an even longer time for them to clear than when I was just taking care of them myself and it took months to get over the side effects from the drugs.

Fast forward two years and I have broken out again with bullous blistering. The good news is:  after doing my own research and reading your comments (along with others earlier) and rereading the specifics of my lab work etc., I now know that dermatitis herpetiformis is a possibility after all.  This seems even more likely when I consider that prior to this breakout I had eaten "seaweed salad" for the first time in my life (3 times in 2 weeks) and had also eaten sushi---lo and behold the iodine connection!  Who knew? Not me-- until I started reading the helpful posts from everyone here! 

I suppose to some it might seem odd that I see it as good news, but, if this is what it is then avoiding iodine at least gives me something to actively do. (Besides remaining gluten-free of course  ) 

[squirmingitch]

3 hours ago, Ging said:

No!  I did not mean that - I meant amount.  One symptom versus the laundry list some people have been dealt.

I'm not bent out of shape about this or frantic.  I like to lay out all the thoughts/questions/info so that there's less back and forth, so no worries about needing to be calm.  I appreciate what you're saying and I'm not at all upset with your answer.  I think the problem I was sorting out was exactly that; sorting.  I'm only looking to educate myself and understand.  I suppose a barrage of questions might seem frantic, but it's curiousity.

When you first approach this disease and forums like this you get many, many different related topics and advice, not to mention anecdotal experiences and evidence.  As you said, the gluten free diet is the answer, but there is a lot to learn about the disease itself and I'm just starting.  Thank you again for taking the time to respond.  It's a big help.

OK, good. You understand me & I understand you. We're doing ok then. Yes, I agree, in the beginning you get seemingly 549 different answers on every topic & it takes a while to sort through it all.

Oh don't worry about my little comment there --- that was me being tongue in cheek. Sometimes I forget that no one can see my body language or hear my tone of voice.

[Ging]

3 minutes ago, squirmingitch said:

Sometimes I forget that no one can see my body language or hear my tone of voice.

Me too.    Most of my talking is with face and hands.

 

[squirmingitch]

rejoiceathome, you are so welcome!!! Oh how many times have I read where people got the dh biopsy after being gluten free & it came back as arthropod bites? Yah, ok. And that's why they are bilaterally symmetrical yes? And that's why my hubs who sleeps in the same bed as me doesn't get these bug bites. That's also why he doesn't get them even though we do everything together. Why he's just so very special!!!! (now I'm being sarcastic) And can ya believe it? Those darn bugs are smart as hell! One bit me several times on my right ear & lo & behold, some of it's relatives bit me in the same places on my left ear! What are the odds of that??? Whadda ya think doc??

Yes, iodine can be like pouring gas on a fire. I still can not eat seafood or anything with carrageenan. NSAID's can do it too but generally not as extreme. 

I've said this before but am going to say it here again for a future readers. Scratching destroys the pattern the pathologist is looking for. The antibodies/lesion itself - even w/o scratching - destroys the pattern the pathologist is looking for. That's why the biopsy has to be taken on clear skin adjacent to an active lesion. The dh lesion separates the layers of skin.

 

[ktyler44]

And those darn bugs have bitten me in at least 500 different places. Right? My rash keeps growing.  It started with one small place on my back and now covers my torso - boobs and all. It is slowly breaking out on the inside of my elbows and forearms. It's on my butt and top of the back of my thighs. A few on my legs. I just don't know whether I should bother with a biopsy. I've been gluten-free except for mishaps for 2+ years. I know I got glutened a few weeks ago, which may be where this came from since it broke out shortly thereafter. But I don't know how long the antibodies are active enough for biopsy even though I have new bumps every day. What does confuse me is that I don't itch as extremely as I hear described by others. There are times that certain ones will itch real bad, but not to the point of driving me insane. It doesn't help that we have had well water issues at home for the past week so we've had to eat out more. I'm trying to be careful.

Question about the iodine: We need some iodine, so how low do we go?

[Ging]

14 minutes ago, ktyler44 said:

It doesn't help that we have had well water issues at home for the past week so we've had to eat out more. I'm trying to be careful.

Could that be the source?  Eating out?  Every single time I've attempted it I've broken out afterwards.  Then again, we have no dedicated gluten-free restaurants here.  

Just a 'for what it's worth' - my breakouts don't itch that horribly either.  They seem very similar to what you experience.  

[squirmingitch]

Eating out is playing Russian roulette. Sorry, the biopsy is just going to be negative & you'll have wasted your time, effort & money. Just 2 weeks, maybe a month max. on the theca.org low iodine diet otherwise, just don't over do the iodine. As time goes by, you'll adjust to knowing how much iodine you can & can't take. I still don't use iodized salt & can't do carrageenan or seafood but I can do as much dairy as I want. 

[ktyler44]

I'm a little confused. Were you saying 2 weeks from the time the breakout started for getting a biopsy? Also, I'm still not sure about much iodine a person has to have for health. I haven't used iodized salt at home for years. I use Redmond Real Salt, which I'm sure has a trace amount of naturally occurring iodine like all sea salt. However, when eating out or at someone else's house, I'm sure I'm getting iodized.

[ktyler44]

 

11 hours ago, squirmingitch said:

on the theca.org low iodine diet 

What's that?

[rejoiceathome]

16 hours ago, squirmingitch said:

rejoiceathome, you are so welcome!!! Oh how many times have I read where people got the dh biopsy after being gluten free & it came back as arthropod bites? Yah, ok. And that's why they are bilaterally symmetrical yes? And that's why my hubs who sleeps in the same bed as me doesn't get these bug bites. That's also why he doesn't get them even though we do everything together. Why he's just so very special!!!! (now I'm being sarcastic) And can ya believe it? Those darn bugs are smart as hell! One bit me several times on my right ear & lo & behold, some of it's relatives bit me in the same places on my left ear! What are the odds of that??? Whadda ya think doc??

Yes, iodine can be like pouring gas on a fire. I still can not eat seafood or anything with carrageenan. NSAID's can do it too but generally not as extreme. 

 

 

[apprehensiveengineer]

14 minutes ago, ktyler44 said:

I'm still not sure about much iodine a person has to have for health. I haven't used iodized salt at home for years. I use Redmond Real Salt, which I'm sure has a trace amount of naturally occurring iodine like all sea salt. However, when eating out or at someone else's house, I'm sure I'm getting iodized.

If you're an adult, the minimum for good health is 150mcg (equivalent to 3 eggs): Open Original Shared Link

Iodine is naturally-occurring in sea salt, but when it is refined/processed the iodine is lost. In most countries, it is a regulatory requirement to add it back in. Iodine is also naturally occurring at low levels most vegetables as it is picked up from the soil, and in dairy products (from cow feed, disinfectants used in processing).

Iodine started being added back to salt because people who lived in iodine-poor soil regions started developing iodine-deficiency hypothyroidism (see Goiter Belt - midwest US/Canada). Back then, diets tended to be less varied and relied on local produce more (poor in iodine due to local soil conditions, no seafood from the coast) which exacerbated the issue. These issues aren't as relevant today, but iodine is still added to salt as an insurance policy to "idiot-proof" your intake. 

I think realistically, it is unlikely that you become dangerously iodine deficient in North America unless you are on a very restricted diet. Assuming you still eat dairy, eggs, and root vegetables, you should be at least hitting the minimum. People who are vegan AND gluten-free could be in trouble, for example, especially if they avoid processed food products.

some iodine numbers for different foods: Open Original Shared Link

 

[ktyler44]

Thank you. That helps a lot. We raise our own beef and chicken. The laying hens are free range and get a small amount of chicken feed. The cows are grass fed, so those are pretty safe. 

[squirmingitch]

3 hours ago, ktyler44 said:

 

What's that?

Open Original Shared Link

[squirmingitch]

2 hours ago, rejoiceathome said:

He's colluding with his friends......  

Oh gosh, you were doomed. That explains a lot.

Great explanation on the iodine apprehensiveengineer!

[Posterboy]

7 hours ago, ktyler44 said:

The cows are grass fed, so those are pretty safe. 

Ktyler44,

Watch out for grass tetany.  Make sure you have a mineral block out at all times.

It is rare in my part of the country but it does happen mainly in the same goiter belt apprehensive engineer mentioned.

Here is a wiki article on it.

Open Original Shared Link

I have friends whose cows died (who lives in the Pacific NW) die from it.

The same thing for Selenium it is commonly low too in the goiter belt and cows needs to be supplemented with it.  A thyroid necessary nutrient.

Or you can fertilize your pastures with Selenium if your located in the goiter belt.

Open Original Shared Link

This is important because as the primary consumer of your beef and milk (eggs etc.) if your soil is low in then then you will be too!

see this article about organic milk where these nutrients are lower in presumably grass feed (organic beef) and milk especially in the (goiter/thyroid belt).

Open Original Shared Link

Like apprehensive Engineer noted/said this is not as important it used to be . ... since people typically get food from areas grown all over the country and only select areas are naturally low in Iodine and Selenium etc.

But you said you get most of your food from your own land i.e. garden/ranch etc. then this is a distinct possibility,.. . and as she noted why we iodized salt in the first place.

So just be aware of it. I actually had a friend develop this condition (Keshans disease) in a selenium deficient area of the US.  . ..Keshan disease first diagnosed in China from an area with low Selenium soils though not common in the US it can happen.

Open Original Shared Link

Eat some Brazil nuts or deluxe mixed nuts (which have Brazil nuts) in them. . . if you think you are in a Selenium deficient area.

When I first received my Celiac diagnosis I had Low T and eating Brazil nuts got me off of T cream.

And my thyroid (along with Vitamin D  and Zinc supplementation) got better at the same time as taking/eating Brazil nuts along with my Low T too!

Open Original Shared Link

Vitamins/Minerals (especially trace) nutrients can be low if we only eat from our own gardens when our local soils are also low in trace nutrients.

Mine was low because my absorption was low but you can get low from "local" food sources if you don't eat outside your area for some of your foods.

As evidenced by organic foods being lower in their value of trace minerals like Zinc and Selenium etc.

I hope this is helpful but this is not medical advice.

As a farmer I thought you would want to know to keep your cattle (and you) healthy if you don't/didn't know already.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Oh! and I second Squirmingitches comment  you explained it very well!

5 hours ago, squirmingitch said:

Great explanation on the iodine apprehensiveengineer!

 

[ktyler44]

My husband has raised cattle all of his life. He's 67. Yes, we provide mineral blocks for them.