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

[Igiveup]

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! 

 

[Bigdogtimo]

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.

[knitty kitty]

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!

 

 

[Brogrammer]

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.

[knitty kitty]

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! 

[Brogrammer]

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!

[knitty kitty]

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!

 

[Brogrammer]

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.

[Ennis-TX]

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.
 

[tessa25]

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).

[knitty kitty]

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).

 

[Brogrammer]

@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.

[Ennis-TX]

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.

[Posterboy]

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,

 

 

[Posterboy]

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,

 

[Guest059483]

There are so many people writing articles online claiming to know what to tell you about Celiac Disease and Dermatitis Herpetaformis. It is important to understand that a lot of the misinformation online is solely based on making profits off of your suffering, whether that be to sell you products, or just to get you to their website so they can make money off of ads. It is a sick world. Many people suffering from Celiac Disease never recover due to being mislead and ultimately go on to suffer for the rest of their lives.

The following is strictly my opinion should not be considered medical advice. It is important to note that what I am suggesting below is based on a Gluten-Free diet, but also incorporates avoidances of many other foods that I also have the same immune system response to. I do not suggest following any of my diet suggestions unless you are not getting results by following a Gluten-Free diet. The subject of Cross-Reaction is a very controversial one, so I recommend doing your own research and testing foods on your own in order to come to your own conclusion of what works for you. 

If you have Celiac Disease and or the associated Dermatitis Herpetiformis, and you have not been able to achieve results on a Gluten-Free diet, stop everything you are currently doing, and look up the following: *See links below

1) 24 foods that cross react with gluten antibodies.

2) Most dangerous foods for people with Celiac Disease.

3) The Gluten-Free Lie.

You might be shocked when you find out that most processed foods labeled "Gluten Free" are loaded with one or more cross-reactive foods. This could mean that "IF" you are like me and react to certain "Cross-Reactive" foods, products that are labeled "Gluten-Free" may be making you sick.

So, you want to get better? Well you could try what works for me.

Many people who have Celiac Disease go on a Gluten-Free diet and get better to a certain point, but then plateau somewhere along the way and never fully feel 100%. They often just settle for 80% or even 50%, being thankful that they made any improvement at all. I have never personally known anyone who has had symptoms as bad as mine, and I made it back to 100%.

So take some advice from someone who has found and been able to maintain results. I had anxiety, brain fog, no energy, trouble sleeping, rash, boils, hives, weight loss, joint pain, geographical tongue, sick all of the time, you name it. All those symptoms mysteriously vanished once I took the advice I am giving you now. It is amazing how fast the body can heal itself once you stop putting things in your mouth that your body doesn't like. I can't guarantee the same for you, but I hope this information helps you think about some new ideas that could ultimately help you get back to living a happy life.

1) Avoid all instances of processed food. That means nothing in a package, can, bag, handed to you on a plate, or through a window. This ensures that you are not getting any cross-contamination. Why would you eat something given to you by someone who knows little to nothing about Celiac Disease, when even you, who has it does not know what is safe for you to eat? Think about that for a minute.

2) Eat whole foods that are not a source of Gluten.

3) Do not eat foods that have been LAB tested and proven to cross-react with gluten antibodies, as you could have the same immune system reaction to them as you do with the Gluten itself.  Many people who suffer from Celiac Disease do not fully recover on a Gluten-Free diet alone, and if that is the case with you, I strongly recommend looking into the possibility of cross-reaction. *See the images and links below if you have not been informed about the possibility of cross-reaction.

4) Buying processed meat can be tricky. You have to be careful when buying packaged meat as they often use absorption pads that have antimicrobial agents often sourced from corn and other cross-reactive ingredients. This one took me a while to figure out.

5) Say goodbye to alcohol, breads, cakes, cookies and candy forever. If you research all of the above you will find that all of the above are a breeding ground for harmful bacteria and yeast. The last thing you want to do is put more of those things into your gut. Harmful bacteria and yeast that is already in your gut also feed on all of the above. To help ward off an overgrowth I use fresh living garlic, apple cider vinegar, coconut oil, and fresh lemon water. Research "Alkalizing your body" and the importance of proper PH so you can learn how to naturally keep your body flora balanced.

6) Avoid all foods that are grown in gluten laced fertilizer, there are more than you might think and it can be a very sneaky subject. Strawberries for example, grown in WHEAT straw, will obviously make you sick. I miss strawberries, If you look hard you can find them grown without the wheat straw, but I would recommend staring at them before they are picked if you plan to eat them.

7) Avoid fillers - Vitamin Supplements are often loaded with fillers that use gluten and or cross-reactive foods. I use tinctures of minerals in a purified water base. Getting the full ingredients list for supplements, or powdered drinks can be very difficult to do. This is where you might start learning some of the big words that the manufactures use to try to hide sources. If a label says something like "Natural flavorings", "Flavorings" or anything vague, simply laugh and put it back on the shelf. Also, if it says "Manufactured on shared on equipment with ANYTHING". Forget about it. It is also important to note that Manufactures are not required to tell you if they use shared equipment with cross-reactive foods.

Buying processed food is like running through a mine field with no detection equipment, sooner or later, probably sooner, you will get hit. To this day I have not seen any products that claim to be free from Gluten AND all of the KNOWN cross-reactive allergens.

I recommend getting all of your nutrients from a balanced whole food diet instead. Have lab testing done to find out if you are lacking somewhere before using supplements, never just start dosing with supplements, that is just a really bad idea that has spawned from years and years of programming from manufacturers advertisements. Health is not going to come from taking yet another pill!

Finally, build a list of safe foods to use as staples. I will even share mine to get you started. Keep in mind, this is my safe list, yours may be different, especially if you can't eat something on my list.

Organic chicken - Bake it, boil it, and use the bones to make bone broth too, this will start rebuilding your gut and your joints right away. I use a little Grass Fed Beef as well to change it up.

Root vegetables - It is pretty hard to mess up with things that are grown under the earth. Sweet potatoes (NOT white regular potatoes, as they are a cross-reactor), I use the white sweet potatoes. Bake them, fry them in organic olive oil, in fact get use to using a lot of olive oil, drink it if you want for extra calories, I pour it on everything to make weight gains when needed.

Green vegetables - Dark leafy greens, wash them, chop them, juice them, blend them up into a smoothy. Parsley, Cilantro and Celery are some of my favorites. Don't forget Broccoli, Asparagus, Cabbage, Onions, Squash, Zucchini.

Need milk? Use almonds, just soak them and blend them up and you have milk.

Fruits - Go easy on the high glycemic fruits, fruit you can peel is ideal, fruit that you don't have to peel, well, remember the strawberry? In the begging if you can't peel it, don't eat it! Avocado has a peel and it is a fruit, I put it in soup, I put it in salad, and they are sure to help fatten you up. I also do pears, Green Apples, Lemons, Limes, Grapefruit, and even a little Pineapple, Mango, Papaya, Banana, and my all time favorite, Pomegranate.

Herbs & Spices - Use single ingredient herbs, no pre-mixed shakers, you are just asking for secret ingredients if you do that. Gluten hides as an anti-caking agent in curry, cajun, and other spice blends that mix many spices together. These extend shelf life and prevent sticking. But it also means they are not "Gluten-Free". Make no mistake, all secret ingredients that manufacturers do not even list on a label are your worst hidden enemy. So stick with whole herbs and spices, and even grind them yourself if needed. 

Tea - I make Tea using all kinds of herbs as well. Nettle Leaf is one of my favorites for calming a reaction, but there are many more. Chamomile, Ginger, Turmeric to name a few.

Juice - Make a couple of juice recipes out of your safe foods. One I like is Carrots, Beets, Celery, Parsley, Ginger, and Lemon. Call it a ginger lemon bomb or what ever makes you smile. My body seems to smile on the inside when I make those. Do not store juice for more than a few hours as bacteria will multiply. Also if you are blending add some ice to keep the enzymes alive. You might also consider Aloe Vera leaf gel in your blended drinks to aid in healing as well, it is good in the gut and on the skin.

Here is another tip, if you are new to cooking from scratch, peel everything. The last thing you want to do is put harmful bacteria in your gut. Peel your carrots, peel your sweet potatoes, peel your beats. Get a peeler! I can't stress this enough.

Once you are feeling good, start to add just one (1) new whole food item per week, but be very cautious, do your research. I have found some things that I can have in a package, not too many though. Sea salt, Olive oil, Coconut oil, Sauerkraut and Apple Cider Vinegar. I also have a few processed spices, but I won't list them because they can be hit or miss depending on where they are sourced from by the retailer which can be here today and gone tomorrow. If you are not getting results, it is most likely due to ingesting hidden ingredients found in the processed food you are adding in the mix.

Final thoughts:

It has been a long known fact that eating pesticides can cause leaky gut, which then can cause auto immune disorders such as Celiac Disease, there has been numerous papers written about it since the 70s. Natural plant pesticides which are part of the plants natural defense system as well as man made pesticides both can damage the gut, this is why I peel almost everything, especially if I can't buy organic.

What is Celiac Disease? It is simply a permanently supercharged immune system due to damage to the body from a toxic diet that has been sold to you for profit. It is that same toxic diet that is still being sold to you in a pretty package with all of the usual suspects names changed and or omitted completely in order to maintain a bottom line somewhere. There is no going back. Unless you mean, going back to making your own food.

Celiac Disease is not so hard to understand once you find and read ALL OF THE RESEARCH. It is important to be seeking out people who are following the latest developments in research and LAB testing.

Read the LAB studies for Cross-Reaction. This knowledge has been around for many years now, but still today hardly anyone is talking about it, and it makes me cringe when I read some of the advice people give to others who are still looking for answers due to not achieving results on a Gluten-Free diet alone. So see all links below to explore some additional possibilities.

Download this image.

Read the research paper to understand where that list comes from.

https://www.scirp.org/pdf/fns_2013011516575568.pdf

Watch this whole video series.

Watch this video about PH once you get your head around the foods you can eat. Alkalizing the body has really changed my life.

 

[Scott Adams]

Although I believe that during the initial post diagnosis gut healing stage everyone should do an elimination diet and eliminate things that also cause negative gut reactions, after the gut heals most people can add these foods back into their diets and not have reactions. The diet you describe is unnecessarily strict, and there is no scientific evidence that most celiacs cannot eat most of these items while on their gluten-free diets. Here is an article we recently did on cross-reactivity:

 

[Scott Adams]

Also, what does the Tony Robbins video have to do with your post? Isn’t he the rich guy who owns an island in the Caribbean that he got from selling the idea that he can make you rich too? Seems like a strange video to throw in there considering your big warning about sites that run ads to pay for their content (which is far from free, by the way).

[cyclinglady]

Why would you follow a diet that was recommended by a chiropractor and not a Gastroenterologist who specializes in celiac disease?  

Cross reactors are a myth in terms of activating celiac disease.   I consume copious amounts of egg, chocolate, coffee, dairy, nightshades, corn, etc. and repeat biopsies via endoscopy revealed a small intestine healed from celiac disease.  Celiacs often do have additional food intolerances, IgE allergies or vitamin and mineral deficiencies that may resolve or may not after healing the gut by eliminating gluten (wheat, barley and rye)  from your diet.  Those can be identified by keeping  a food and symptom journal.  Scientists think that zonulin (celiacs have too much of this “gatekeeper”) maybe the cause of “leaky gut”.  

Get your advice about celiac disease from reliable celiac disease sites.  Not quacks!  Know that this is a forum, where everyone is free to give an opinion, but not medical advice.  Go to a celiac research center for evidence-based medical information or talk to your medical provider.  

 

[Guest059483]

4 hours ago, cyclinglady said:

Why would you follow a diet that was recommended by a chiropractor and not a Gastroenterologist who specializes in celiac disease?  

Cross reactors are a myth in terms of activating celiac disease.   I consume copious amounts of egg, chocolate, coffee, dairy, nightshades, corn, etc. and repeat biopsies via endoscopy revealed a small intestine healed from celiac disease.  Celiacs often do have additional food intolerances, IgE allergies or vitamin and mineral deficiencies that may resolve or may not after healing the gut by eliminating gluten (wheat, barley and rye)  from your diet.  Those can be identified by keeping  a food and symptom journal.  Scientists think that zonulin (celiacs have too much of this “gatekeeper”) maybe the cause of “leaky gut”.  

Get your advice about celiac disease from reliable celiac disease sites.  Not quacks!  Know that this is a forum, where everyone is free to give an opinion, but not medical advice.  Go to a celiac research center for evidence-based medical information or talk to your medical provider.  

 

Hello,

My post is not intended for people who are well. It is intended for people who are sick and giving up on the opportunity to feel well as the OP stated in the thread. Like it or not, there are plenty of people who are not getting results following the advice that the Celiac Gurus have to offer. I was one of them for 10 years. What is wrong with sharing what works for me?

In regards to the cross-reaction being a myth. I have personally recorded serious reactions to all of the known cross-reactors, as well as many legumes, and some seafood long before that information came out. Furthermore, a diet is only unnecessarily strict when you have no results either on it or off of it. If you feel well on a certain diet, I think it is absolutely necessary. Besides, how is eating a whole food diet that includes almost all essential vegetables and fruits a "strict" diet. It could also be called a healthy diet. I use to be overweight and miserable, but now I look 10 years younger than I am and I feel like a million bucks. I use to be under weight and miserable too. I have seen all sides of Celiac Disease. What worked for me could work for others.

Using other peoples videos to explain ideas to people who may have never been given the opportunity to cross examine other peoples ideas is not a negative thing. I know and work for Doctors who treat all kinds of auto immune disorders who ignore new information. Finding a doctor of any kind who shares information that might actually help people free of charge is pretty rare. Most are just out to sell products and services. Tony Robbins is good at what he does, giving people hope. That is why he is rich. Plus he constantly states that if what he says is not working for you or you don't want to try it, to just forget it and throw it away. I am perfectly fine with my opinions being treated in the same way, but don't discredit my post. Let the people who are still sick and want to try something else do that. 

I did not discredit this site in any way. Yet I got discredited right out the gate. People are still sick, and they need more information. If this is a site for Celiacs to try to help each-other, let us try. 

Edited April 26, 2020 by Hellegeist

[Scott Adams]

I agree that the OP may have issues with some items in your very long list of foods to avoid, and if they can figure out what those are they their health will improve, but I doubt they would have issues with even 80-90% of the items you list. During the elimination phase it makes sense to limit your diet for time, but I think it's important to clarify to the OP that this isn't necessarily forever (but could be for 1-2 items).

Honestly, my apologies if you believe I was intending to discredit you for your choice of posting a Tony Robbins video. My not being able to watch more than 3 seconds of that guy without feeling nauseated is probably a personal problem that says more about me than you. I can't stand the guy, so whatever message was in there is lost to me. 

[cyclinglady]

@Hellegeist

I am glad that you healed and are well on your non-processed foods diet which I also follow and encourage.  But I still disagree that there are gluten cross reactors.  Maybe, we are just mis-communicating on word definitions.  For celiac disease, only gluten (wheat, barley and rye) can trigger a celiac disease reaction.  The exception being refractory celiac disease which is very, very, rare.  

As I stated before, celiacs often have food intolerances (or allergies IgE). The most common is lactose because the villi tips can be damaged and that is where the enzymes to digest lactose are released.  I am no longer lactose intolerant.  However, I am intolerant to things like Xanthan Gum, garlic and onions and mushrooms.  I am allergic to nuts.  These intolerances and allergies do not trigger a celiac disease flare-up.  They just make me miserable for a few days (I do not experiment with nuts though......)  you could say I have a reaction, but it is not the same as the autoimmune response I get when I consume gluten.  

The only way to know for sure if this is true is to get a repeat endoscopy with biopsies.  I did this while eating most of those foods you listed on the poster insert  (eggs, coffee, corn, cheese milk, etc.)   My villi had healed.  But....I learned something.  I learned that you can heal from celiac disease and yet have other autoimmune disorders that can mimic or have comparable symptoms.  During that repeat endoscopy, my GI diagnosed me with Chronic Autoimmune Gastritis.  That GERD (reflux, indigestion, nausea, pain) was not attributed to active celiac disease at all.  I learned that I could not assume that I was somehow getting gluten into my diet.  I learned that not all symptoms are due to celiac disease.  I urge anyone who is in a gluten-free diet and still suffers from celiac disease or NCGS, to see their doctor.  

Glad you are well.  

 

[Guest059483]

I have learned a lot of things over the years too. Celiac Disease literally means Abdomen Disease. It is just another description of a symptom, or multiple symptoms most likely caused by things you are putting into your belly. There is no one size fits all, because we are all different. I suffered from serious Acid Reflux as well for over 20 years. Once I stopped eating things that I was having an immune system reaction to in the gut, and that my body could digest easily, all symptoms of Acid Reflux went away, never to return again. Once I learned how important a healthy balanced whole food diet was, all my fears of not being able to drink coffee and eat donuts went away. I have watched people die from not being able to stop drinking soda pop. It isn't pretty.

I will say though that I personally do not believe that food should hurt, and I think everyone can heal from almost any disease on the right diet. I first figured out that my body did not like certain foods when I was literally starving to death and all I had was water for days. I was hungry, but I felt great! My approach now is if it makes you feel bad, why eat it? Life is too short to feel sick. Plus with Celiac Disease being covered under The Americans With Disabilities ACT. I have had little resistance bringing my own food anywhere I want to go.

While other people struggle to go out to eat, I am bringing back picnics. Being outside is where its at.

[NoGlutensToday]

I'd recommend brushing up on the Fasano Diet promoted by Dr. Alessio Fasano. I was diagnosed with celiac and had severe DH. I went "gluten free" but over the next couple years my condition only improved marginally. Finally I  started reading the writing of Dr. Fasano, as he is one of the most respected experts on celiac and recovery. I followed his diet for 6 months and, while it is very strict, I made incredible advances in my recovery.

I've been feeling great over the past 18 months. I went from being sick all the time and unable took to working fulltime and going back to my old interests (such as athetics).

[Jani5t5ai]

On 7/15/2018 at 6:25 PM, Igiveup said:

 

 

I'm sorry to hear about your suffering. Please, please please stick to your gluten-free diet, even when you think it is not worth it. Trust me, that is the only way to break the cycle. In the meantime, go to a dermatologist, ESPECIALLY one who has previous experience with patients with DH and get an appointment for some itch relief. My dermatologist prescribed me Triamcinolone Acetonide Cream USP, 0.1%. I swear, that miracle cream is a godsend. It is powerful enough to stop my intense itches, and most of all, after regular application, it turned my hot-mess, ravaged by DH, dragon scale-looking arms, back to normal and I stopped getting weird looks from people. You WILL heal from DH. I promise. The cream I was prescribed made the process much shorter.