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Igiveup

The more I'm "in," the worse it gets!

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It seems as though the more I research, and dedicate myself to becoming gluten free(only 6-8 weeks now), the worse my dh is getting! I know I am probably missing some things, but my diet compared to several weeks ago, is hugely improved! I have learned that humility, and always remaining teachable will be one of my best allies in this battle. Just this morning, after making a dreaded assumtion that what I heard earlier about coffee, was not all inclusive, and that I might very well been poisening myself, with about 40 - 60 ounces of instant coffee every morning! Plus relying on a cheap variety(great value) of hazelnut creamer( just because it said gluten free, not certified! ) So off to the store for a new coffee maker, ground Folgers, and...we'll see! I am sorry to be so lengthy, but if I can save anyone, or only one person from dh of this magnitude, I will be at least a happier camper! 

As I stated earlier, it seems my outbreaks have only been getting worse. I (so far) have only experienced dh, but don't know how much more I can tolerate, and find it impossible to believe that I am using "only" and "dermatitis herpediformus" in the same sentence!!! I still have two months to go in a new job, until my insurance kicks in, and in the meantime will have to see a dermatologist, instead of a gastro-intestinal dr. Believe me, I can ill afford to not tell this dr. that I had a preliminary diagnosis via, skin biopsy, that indicated celiac. This is hideous. Please, any ideas????????

Thank you for the posts I've read so far, and hopefully, if anyone is doing the instant coffee thing.... it might be wise to reconsider! 

 

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Sorry to hear about what you’re going through, I know your pain. Six years ago the blisters started and I was misdiagnosed with Bullous Pemphigoid.  I was correctly diagnosed with DH and celiac disease in April of this year and started a gluten-free diet then.    My doctor told me a gluten-free diet would take the blisters away in six months to two years. I started on 50 mg of Dapsone along with a 100% gluten-free diet  which started to take effect within three days thanks to the Dapsone. I found that I can’t  eat at any restaurant that isn’t 100% gluten-free.

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I found improvement when I excluded iodine (as in iodized salt and shellfish).

Vitamin D and A supplements help, too. 

Hope you find relief soon!

 

 

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28 minutes ago, knitty kitty said:

I found improvement when I excluded iodine (as in iodized salt and shellfish).

Vitamin D and A supplements help, too. 

Hope you find relief soon!

 

 

Well first I want to say, I seriously sympathize with the OP. Dh doesn't seem to be my "symptom of choice", but in fact the farther I go in and maybe occasionally screw up after longer and longer periods of time... the worse the next reaction is or next withdrawal is. This is so bad ugh  hopefully we get through it soon.

 

Now... regarding the post I quoted... do you know of a gluten free / soy free brand of Vitamin D? A I suppose too but I don't think from my research that I'm deficient in that one.

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9 hours ago, Brogrammer said:

Well first I want to say, I seriously sympathize with the OP. Dh doesn't seem to be my "symptom of choice", but in fact the farther I go in and maybe occasionally screw up after longer and longer periods of time... the worse the next reaction is or next withdrawal is. This is so bad ugh  hopefully we get through it soon.

 

Now... regarding the post I quoted... do you know of a gluten free / soy free brand of Vitamin D? A I suppose too but I don't think from my research that I'm deficient in that one.

I am currently taking cod liver oil which has both vitamin A and D.  Country Life is the brand I'm trying now.  Look for brands that don't add additional vitamin A and D from other sources and that don't add other oils.  

Vitamin A is important to your immune system.  Vitamin A helps in reducing inflammation. Here are some articles.

https://www.ncbi.nlm.nih.gov/pubmed/17922955

https://www.ncbi.nlm.nih.gov/pubmed/22369848

Hope this helps! 

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13 hours ago, knitty kitty said:

I am currently taking cod liver oil which has both vitamin A and D.  Country Life is the brand I'm trying now.  Look for brands that don't add additional vitamin A and D from other sources and that don't add other oils.  

Vitamin A is important to your immune system.  Vitamin A helps in reducing inflammation. Here are some articles.

https://www.ncbi.nlm.nih.gov/pubmed/17922955

https://www.ncbi.nlm.nih.gov/pubmed/22369848

Hope this helps! 

Thank you! Indeed it does help. I read something yesterday also about carrots being a grand idea for recovery, I suppose this goes together. I get a lot of sunlight and I eat plenty of eggs, so that should be good for vitamin D until I can find a decent supplement or some of this cod liver oil. I'll up the carrot intake I suppose too. Right now though honestly, I am taking B12, drinking coconut water, and eating yogurt exclusively. Before that I was mostly eating bland things like rice and eggs, but that got me constipated, so definitely nevermind that for awhile... fixed it as soon as I quit and went for softer foods and a near liquid diet.

I'm realizing now from a few screwups and recoveries, this being the worst so far... that what the OP said is very true. Not only that, it may be refreshing to realize that the whole "darkest hour is before the dawn" thing seems to be true of this recovery. I keep getting worse and worse and worse and then I'll have a few hours of amazing respite. So I feel like it happens in cycles and maybe the last purge of gluten is when your body is really freaking out. Let's just get through this already!

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Your diet of coconut water and yogurt and B12 scares me!

Coconut water has diuretic properties.  It increases urine production and can cause diarrhea.  

Yogurt is dairy.  Celiacs have damaged villi in the intestines.  The tips of the villi normally produce lactase, an enzyme that digests lactose, the sugar in dairy.  With damaged blunted villi, there's no lactase produced to digest lactose.  The undigested milk sugars goes through your system and ferments and feeds undesirable gut bacteria causing bloating, gas, diarrhea and contributes to SIBO (small intestinal bacterial overgrowth) and Candida yeast problems.  

B12 needs an intrinsic factor produced in the stomach for it to be absorbed in the small intestine.  Sort of like a tug boat towing a larger ship in to dock.  If your stomach is too alkaline the intrinsic factor doesn't work.

B12 needs other B vitamins to work properly.  B12 needs folate.  Folate works with riboflavin which needs thiamine and niacin.  You need to take all eight B vitamins together.  They are water soluble and need to be replenished every day.

Thiamine (B1) and niacin (B3) are really important to digestive health.  Thiamine helps with stomach acid production (so you can have that intrinsic factor work properly for B 12 absorption).  Niacin helps heal the villi and heal leaky gut syndrome.  Leaky gut syndrome is where the intestinal walls become permeable allowing stuff from your digestive tract to flow through and wreak havoc.  Thiamine and niacin are important in brain function, too.

I followed the Autoimmune Protocol (AIP) diet and quickly felt improvement.  AIP is basically no grains, no dairy, no corn, no legumes. No processed foods. No processed meats like sausage or smoked meats.  No nightshade vegetables (peppers, potatoes, eggplant, tomatoes).  Nightshades have alkaloids that contribute to leaky gut syndrome.   Just fresh meat and fresh vegetables.

When I get glutened, I throw a hunk of beef and veggies in a pot and simmer till beyond tender.  Some like bone broth.  Some like chicken soup.  Go easy on the spices, though.   

 I stay away from eggs because I react to them now.  Eggs are one of the top ten allergens.  So while my body is running amok, I don't want give it anything else that may set it off! 

Drink plenty of water.  No fruit juice because it's high in sugars and will aggravate that fermentation, gas, and SIBO and high in sulfites.  

Low iodine diet (no shellfish, no dairy, no idolized salt) and low histamine (no pickled or fermented foods, no smoked meats, no legumes, no sulfites) diets will also help in healing the gut and reducing DH outbreaks.  

Iodine will trigger DH.  High histamine foods will trigger DH reactions by stimulating mast cells (Mast Cell Activation Syndrome).  

As you heal, you can add more foods back into your diet as you can tolerate them. 

I think that's all I have to say about that.

 

4 hours ago, Brogrammer said:

Thank you! Indeed it does help. I read something yesterday also about carrots being a grand idea for recovery, I suppose this goes together. I get a lot of sunlight and I eat plenty of eggs, so that should be good for vitamin D until I can find a decent supplement or some of this cod liver oil. I'll up the carrot intake I suppose too. Right now though honestly, I am taking B12, drinking coconut water, and eating yogurt exclusively. Before that I was mostly eating bland things like rice and eggs, but that got me constipated, so definitely nevermind that for awhile... fixed it as soon as I quit and went for softer foods and a near liquid diet.

I'm realizing now from a few screwups and recoveries, this being the worst so far... that what the OP said is very true. Not only that, it may be refreshing to realize that the whole "darkest hour is before the dawn" thing seems to be true of this recovery. I keep getting worse and worse and worse and then I'll have a few hours of amazing respite. So I feel like it happens in cycles and maybe the last purge of gluten is when your body is really freaking out. Let's just get through this already!

 

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Hmm... for some reason dairy seems okay for me. I actually used to avoid it because of sinus issues. After my last glutening, I started just eating rice, eggs, and stirring in some bone broth. That worked for awhile but then I got too constipated, so I took a laxative and started the liquid and yogurt diet just to let things clear up. I feel worlds better today.

I have heard that though, about dairy being hard on the intestines. But it is also probiotic and settles the stomach. So I'm not sure what's going on with it but it seems to work for me. Anyway, I have to work this upcoming week but then I'm taking the first three weeks of August off to figure out this whole new health thing. One of the biggest problems is how this is new and I've had to face it all while also being at a high point stress in my work environment.

Anyway, as for the vitamin drinks... some of my most consistent and strong symptoms with getting glutened and then having withdrawal are lightheadedness and mood swings. Before ever knowing I had Celiac, or perhaps before I even had it... I was told I had some occasional issues with electrolytes that were causing the lightheadedness and contributing to the mood swings... hence vitamin drinks to fix that.

Thanks for all the advice... other than what I read here and try, I'm just relying on intuition right now. For example, this last round of constipation was not even from gluten but from eating too much lunchmeat probably too soon after getting gluten. I have also heard that meat is tough to digest and have definitely experienced that.

Oh also... I think a big part of today working out for me was just eating far less. I cannot completely fast because I am very thin and my metabolism is super efficient, but I did benefit from cutting down on total intake.

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B vitamins works synergistically...taking just one is pointless....Look at something like Liquid Health Energy & Stress, if your having neurological issues then add in a dose of their Neurological support both are liquids take 1 tbsp each 3 times a day in a glass of something.

I would suggest a coconut or almond milk yogurt no sugars if you can find them over dairy, you will feel lighter and better. Hell you can make your own in a crock pot or mason jar with the nut milk and probiotics.

I personally love nut meal porridge with almond flour, coconut flour, nut butters like almond, pecan, or sunbutter, mix in some cinnamon and stevia and bam, high calorie easy to digest porridge without the carb bloat. You can even stir in eggs while simmering on the stove to thicken and add protein or add in a vegan protein powders. I also make shakes with nut butters and protein powders and green shots with kale chips or moringa powder for my green to make them easy to digest.
 

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I survived on mashed potato soup, vanilla ice cream, chocolate drink, multivitamin, D3, and magnesium for two years. When the doc checked my nutrient levels only my neutrophils were low (lack of meat). Neutrophils went up when I started eating some meat. Just goes to show that everybody is different.

If I were you I would add in chicken and lots of cooked zucchini (helps with constipation).

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Tessa, 

Neutrophils are a type of white blood cell.  Your body needs B vitamins like B12, folate, niacin and thiamine, copper, and amino acids to make neutrophils.  These vitamins, minerals and amino acids are all found in meat.  By eating meat, you provided your body with the nutrients it needed to produce more neutrophils.  

Subclinical vitamin deficiencies often show up as subtle changes in blood cells.  

With malabsorption and malnutrition, one multivitamin may not be enough to prevent or reverse vitamin deficiencies because of your body's increased demands for vitamins during illness and stress.  

What a good example.  Thanks for sharing.

K.

5 hours ago, tessa25 said:

I survived on mashed potato soup, vanilla ice cream, chocolate drink, multivitamin, D3, and magnesium for two years. When the doc checked my nutrient levels only my neutrophils were low (lack of meat). Neutrophils went up when I started eating some meat. Just goes to show that everybody is different.

If I were you I would add in chicken and lots of cooked zucchini (helps with constipation).

 

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@knitty kitty

Hey, I wanted to inform you that you turned out to be right about coconut water. I drank some on an empty stomach because I felt dehydrated and had taken a long walk to the pharmacy in the morning... and damn did I feel terrible for the next 48 hours.

Oddly, even though my metabolism is too fast to uh, fast, in the strict sense... I have had luck with like 90% fasting for about two days, sticking to bone broth and tea. I had not tried that in the past because of the fast metabolism, but it seems to be the only thing that helps me recover sooner than 3-7 days.

Anyway, along with your coconut water prophecy, I do seem to have sensitivity to sugary things after a gluten episode... then it passes along with the other gluten symptoms. I have never been a big sugar consumer, but also never had a bad reaction to it until recently. I guess it's true that about two years of gluten since the first warning sign that I was sensitive to it, has really sent my guts into revenge mode.

Well, I hope you're doing better now. It seems that I am, though the withdrawal symptoms have begun again. Better than messing up I suppose. The title of this thread is so on point as well, each accidental glutening seems to have worse consequences than the last. Here's to perfecting the diet.

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2 hours ago, Brogrammer said:

@knitty kitty

Hey, I wanted to inform you that you turned out to be right about coconut water. I drank some on an empty stomach because I felt dehydrated and had taken a long walk to the pharmacy in the morning... and damn did I feel terrible for the next 48 hours.

Oddly, even though my metabolism is too fast to uh, fast, in the strict sense... I have had luck with like 90% fasting for about two days, sticking to bone broth and tea. I had not tried that in the past because of the fast metabolism, but it seems to be the only thing that helps me recover sooner than 3-7 days.

Anyway, along with your coconut water prophecy, I do seem to have sensitivity to sugary things after a gluten episode... then it passes along with the other gluten symptoms. I have never been a big sugar consumer, but also never had a bad reaction to it until recently. I guess it's true that about two years of gluten since the first warning sign that I was sensitive to it, has really sent my guts into revenge mode.

Well, I hope you're doing better now. It seems that I am, though the withdrawal symptoms have begun again. Better than messing up I suppose. The title of this thread is so on point as well, each accidental glutening seems to have worse consequences than the last. Here's to perfecting the diet.

Yeah it is because it is high in potassium without sodium, the potassium dries out your stool and then causes you system to flush out the liquid, more sodium can help offset the balance with retaining water. NOTE coconut water in moderation is good, try watering it down quite a bit so you just get some of the electrolytes but not throw your system so out of balance, but again it is sugar loaded.

On the potassium note...I use it in 3000mg doses to stop gluten runs with really bad D.

Try a Keto diet with the intermittent fasting once you heal a bit, really helps with promoting growth factor hormones and building up a lean body. I can only manage it in shorter intervals then recommended for "normal" people...But I get the same results of a 16 hour fast only going 8-12 hours not eating.

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On 7/15/2018 at 5:25 PM, Igiveup said:

It seems as though the more I research, and dedicate myself to becoming gluten free(only 6-8 weeks now), the worse my dh is getting!

 

On 7/18/2018 at 4:55 PM, Bigdogtimo said:

Sorry to hear about what you’re going through, I know your pain. Six years ago the blisters started and I was misdiagnosed with Bullous Pemphigoid.  I was correctly diagnosed with DH

Igiveup and Bigdogtimo,

Let me first say I did not have your DH experience.

But I have  had friends with similar dermatitis issues.

Adult Rosacea can be treated with a Doxy or Tetracycline round of Antibiotics.

Which got me to wondering if there were any studies that used either Doxycycyline or Tetracycline as a first line treatment of DH and as it turn out there have been cases where Doxy or Tetracycline has been successfully used in patients not tolerant to Dapsone.

I don't know why doctors dont' have their nurses do these kind of things ie. a literature search on Pubmed especially in hard to treat/diagnose cases.

Both doxycycline and tetracycline has been used either for DH and/or Bullous Pemphigoid.

So it doesn't matter in these studies which dermatitis condition it is.  It was rosacea in my friends case and doxy/tetracycline helps them.

It should be noted only the Doxy alone was used in Bullous Pemphigoid.

When Tetracycline was used for DH it was used in conjunction with Niacinamide and/or Heparin in these studies.

But since studies have shown improvement with only the Doxy or Tetracycline/Niacinamide combination for DH I think the Heparin might not be needed.

Here is the studies to read more in depth for yourselves when you get the chance.  But these are not isolated studies.

The first three studies are on tetracycline.

https://www.ncbi.nlm.nih.gov/pubmed/2940979

https://www.ncbi.nlm.nih.gov/pubmed/10844495

https://jamanetwork.com/journals/jamadermatology/article-abstract/555806

There is a citation for Tetracycline in the treatment of DH too but it is not available as an abstract.

entitled "Successful treatment of dermatitis herpetiformis with tetracycline and nicotinamide in a patient unable to tolerate dapsone."

Link provided for citation without abstract

https://www.ncbi.nlm.nih.gov/pubmed/8445075

If somebody can find the abstract please post it.

this study is on doxycyline and is very current only being a little over a year old instead of corticosteroid's.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30549-4/fulltext

Who knows what the outcome might of been if they had restudied the already proven combination Tetracycline and Niacinamide for DH.

Link provided again for easy reference entitled "Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide."

https://www.ncbi.nlm.nih.gov/pubmed/10844495

And this is research is not unusual. . .. It is 15+ years old and most doctor's are still not aware of this treatment regimen for DH.

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

But my friend has successfully used some of these antibiotics to treat his dermatitis issues.

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

Posterboy by the Grace of God,

 

 

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10 hours ago, Brogrammer said:

Hey, I wanted to inform you that you turned out to be right about coconut water. I drank some on an empty stomach because I felt dehydrated and had taken a long walk to the pharmacy in the morning... and damn did I feel terrible for the next 48 hours.

Brogrammer,

Knitty Kitty and Ennis_Tx are usually right so I am not countering their advice but usually Coconut water  helps Diarrhea at least to stop it by restoring an electrolyte balance.

If you have started it too fast sometimes we can have a bad reaction to the Candida (yeast infection) that dies off from the coconut water  and it can cause diarrhea.

This can be especially true with coconut oil.

see this article about it.

https://www.healthline.com/health/womens-health/coconut-oil-for-yeast-infection#research

This effect is usually temporary (two weeks or less) and is not directly related to the coconut water itself.

See this livestrong article about coconut water.

https://www.livestrong.com/article/488081-does-drinking-coconut-water-cause-diarrhea/

Odd fact ***during WWII in the Pacific theater of war the coconut water electrolyte balance is so similar to our blood it (coconut water) was used as blood substitute during blood shortages.  They usually could extend someone's life for 48 hours or so when blood was not available.

I hope this is helpful bu it is not medial advice.

Posterboy,

 

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