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Blocking Interleukin-15 May Treat Celiac Disease Symptoms - Celiac.com


Scott Adams

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Scott Adams Grand Master

Blocking Interleukin-15 May Treat Celiac Disease Symptoms

Celiac.com

New study on blocking Interleukin-15 to treat celiac disease symptoms Celiac.com 03/18/2011 - By blocking an inflammatory protein called interleukin-15 (IL-15), doctors may be able to treat and prevent symptoms of celiac disease in some people, ...

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GFinDC Veteran

Wow, a way for mice to eat gluten! :D:) Sounds interesting, definitely worth watching for more info on this. Thanks for the post Scott!

Takala Enthusiast

The biological anti TNF drugs that they are already marketing for auto immune arthritis have so many potential bad side effects as documented on PubMed and NIH (see how I added the disclaimer), tend to wear off in effect after awhile, and are so expensive, if they were marketed the same way, it would only be another complete validation for the efficacy of the gluten free diet. :)

mushroom Proficient

The biological anti TNF drugs that they are already marketing for auto immune arthritis have so many potential bad side effects as documented on PubMed and NIH (see how I added the disclaimer), tend to wear off in effect after awhile, and are so expensive, if they were marketed the same way, it would only be another complete validation for the efficacy of the gluten free diet. :)

Except that some of us on the gluten-free diet still have to use the TNF-inhibitors. :(

eatmeat4good Enthusiast

That is an interesting connection between Vitamin A retinoic acid causing more inflammation when they thought it would be anti-inflammatory. This may speak to why Accutane (retinoic acid derivative of vitamin A) is now being implicated in "causing" intestinal disorders like Chron's, Celiac and IBS.

Takala Enthusiast

Yes, and I'm not saying that you shouldn't use whatever medications you have available, if you've looked at what the risks vs. benefits are.

The people in the countries with universal medical coverage tend to be enthusiastic.

I have had this disease a very long time, and all I can say is, I loathe rheumatologists and the whole Medical - Industrial complex in the U.S. Regular doctors, my dentist, my eye doctor, my ob- gyn, all have acknowledged that I certainly have arthritis and its various side effects/symptoms from what they see - it is only the HMO /managed care rheumatologists and the one Neurologist from ****

mushroom Proficient

I am guessing, Takala, that you might be insured (if that is the right word) by that big engineering company :o I have always chosen any insurance but that one (I know, sometimes you don't have a choice :( ) I live in a universal health insurance country and they cannot afford to provide me with Humira - I have to come back to the US every year and get it under my Medicare :D, and it was only because my rheumatologist here recommended it that my rheumy there prescribed it - he didn't even think there was any relationship between celiac and RA or PsA. :unsure: Now this was just plain ignorance, not denial.

At any rate, if the diet were working for me I would not be taking the Humira. Unfortunately, diet does not have any effect on my symptoms. And to date I have no known side effects from Humira, although I react negatively to most meds. Heck, I can't even take aspirin, ibuprofen, benadryl, codeine, .... and on, and on and on. Maybe that will happen with Humira eventuallly too, at which point I might throw in the towel, but until that day I will keep taking it 'cos it's the only thing I can take. :huh:


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GFinDC Veteran

I wonder if this means celiacs shouldn't be taking large amounts of vitamin A in pills? Although if the negative effect only happens with gluten is present, maybe it doesn't hurt anything. It could be a good reason not to take a multi-vitamin when glutened by accident though. OR to avoid foods high in Vitamin A when glutened.

Open Original Shared Link

Vitamin A is found naturally in many foods:

* liver (beef, pork, chicken, turkey, fish) (6500 μg 722%), including cod liver oil

* carrot (835 μg 93%)

* broccoli leaf (800 μg 89%)

eatmeat4good Enthusiast

Hey GFinDC!- I've always been fascinated that you can't eat Bug's Bunnies Carrots...and wondered how on earth you figured that one out....but maybe it's the Vitamin A? I've always tried to take high Vitamin A without reaching toxic levels thinking it is good for my skin. But if it is inflammatory....oh god...I'm backing off of it just in case. Can't hurt to try...especially regarding the fact that I have unresponsive DH. Very interesting.

GFinDC Veteran

Hi EM4G,

I am wondering about the carrots and Vitamin A myself. I figured it out by doing an elimination diet. Actually I did 3 different elimination diets over the past 3 years. Always found something new that I hadn't figured out before too. I was really surprised when I added carrots to my diet at one point and had a bad GI reaction. I tried them several times later to be sure and it was always bad news. There are a few people on the board that have carrot problems besides me. I don't have an allergy type reaction to them, but other people do.

Anyone Allergic To Carrots?

For people that have allergy (IgE) reactions, there is a cross reaction possible for quite a few foods. I think it makes sense that the same kind of cross reaction is possible in food intolerance type reactions. At least, I haven't seen any rule carved in stone saying it isn't possible. If you search for allergy and cross reaction you can find lots of lists of lists of them.

Open Original Shared Link

Abstract

Pollen-allergic patients frequently present allergic symptoms after ingestion of several kinds of plant-derived foods. The majority of these reactions is caused by four distinct cross-reactive structures that are present in birch pollen. Proteins that share common epitopes with Bet v 1, the major birch pollen allergen, occur in pollens of several tree species: apples, stone fruits, celery, carrot, nuts, and soybeans. Approximately 70% of our patients who are allergic to birch pollen may experience symptoms after consumption of foods from these groups. In contrast, two minor allergenic structures-profilins and cross-reactive carbohydrate determinants (CCD)-that sensitize approximately 10-20% of all pollen-allergic patients are also present in grass pollen and weed pollen. Moreover, IgE-binding proteins related to the birch pollen minor allergen Bet v 6 have been found in many vegetable foods such as apple, peach, orange, lychee fruit, strawberry, persimmon, zucchini, and carrot. Frequently, the occurrence of cross-reactive IgE antibodies is not correlated with the development of clinical food allergy. In particular, the clinical relevance of sensitization to CCD is doubtful. Generally, pollen-related allergens tend to be more labile during heating procedures and in the digestive tract compared to allergens from classical allergenic foods such as peanut. However, recent DBPCFC studies have shown that both cooked celery and roasted hazelnuts still pose an allergenic risk for pollen-sensitized subjects. Since pathogenesis-related proteins share several common features with allergens and both the Bet v 1 and the Bet v 6-related food allergens are defense-related proteins, approaches to introduce such proteins as a measure to protect plants against diseases should be performed with caution as they may increase the allergenicity of these crops.

Tyson Holly MD Newbie

That is an interesting connection between Vitamin A retinoic acid causing more inflammation when they thought it would be anti-inflammatory. This may speak to why Accutane (retinoic acid derivative of vitamin A) is now being implicated in "causing" intestinal disorders like Chron's, Celiac and IBS.

I just spoke to the lawyer who is among the group processing the huge case up in NJ right now with the actor from " A Few Good Men ". This actor has a diagnosis of celiac and IBD, not crohns or UC. The lawyer was VERY interested in my case and the research out of the University of Chicago, ironically where I did my residency. Go here to see the recent press release from the University of Chicago. Open Original Shared Link

His name is Van Robichaux and his website is www.accutanenews.com. He is asking that any one who took accutane or its generics and later developed Celiac disease go to the website and register your case. it's too expensive to try one single case, such as mine, but they are very interested in getting a group if cases together. Not a class action, but 5-10 cases to be tried together. I know I am not unique in my experience. This could get the word out about this horrible connection.

I am in no way affiliated with this law firm. I'm simply a doctor who took accutane during my residency training bc I had severe outbreaks at that time. I now know it was probably wheat related, but I was healthy still until after the accutane. Now I'm unable to do a job that I love and trained for my whole life. I KNOW if it's this easy to induce celiac with accutane in mice that Roche should have known but hid these side effects, causing immense pain and suffering for many of us. I spoke with five other law firms advertising on celiac sites and no one else could even spell celiac. They were only interested in Crohns or UC.

If you have any questions, email me. Tysonholly@hotmail.com. And if you are a moderator, please help me spread the word about registering these cases. There is nothing in it for me except justice and education.

Tyson Holly MD Newbie

I wonder if this means celiacs shouldn't be taking large amounts of vitamin A in pills? Although if the negative effect only happens with gluten is present, maybe it doesn't hurt anything. It could be a good reason not to take a multi-vitamin when glutened by accident though. OR to avoid foods high in Vitamin A when glutened.

Open Original Shared Link

Vitamin A is found naturally in many foods:

* liver (beef, pork, chicken, turkey, fish) (6500 μg 722%), including cod liver oil

* carrot (835 μg 93%)

* broccoli leaf (800 μg 89%)

Tyson Holly MD Newbie

Hi EM4G,

I am wondering about the carrots and Vitamin A myself. I figured it out by doing an elimination diet. Actually I did 3 different elimination diets over the past 3 years. Always found something new that I hadn't figured out before too. I was really surprised when I added carrots to my diet at one point and had a bad GI reaction. I tried them several times later to be sure and it was always bad news. There are a few people on the board that have carrot problems besides me. I don't have an allergy type reaction to them, but other people do.

Anyone Allergic To Carrots?

For people that have allergy (IgE) reactions, there is a cross reaction possible for quite a few foods. I think it makes sense that the same kind of cross reaction is possible in food intolerance type reactions. At least, I haven't seen any rule carved in stone saying it isn't possible. If you search for allergy and cross reaction you can find lots of lists of lists of them.

Open Original Shared Link

Abstract

Pollen-allergic patients frequently present allergic symptoms after ingestion of several kinds of plant-derived foods. The majority of these reactions is caused by four distinct cross-reactive structures that are present in birch pollen. Proteins that share common epitopes with Bet v 1, the major birch pollen allergen, occur in pollens of several tree species: apples, stone fruits, celery, carrot, nuts, and soybeans. Approximately 70% of our patients who are allergic to birch pollen may experience symptoms after consumption of foods from these groups. In contrast, two minor allergenic structures-profilins and cross-reactive carbohydrate determinants (CCD)-that sensitize approximately 10-20% of all pollen-allergic patients are also present in grass pollen and weed pollen. Moreover, IgE-binding proteins related to the birch pollen minor allergen Bet v 6 have been found in many vegetable foods such as apple, peach, orange, lychee fruit, strawberry, persimmon, zucchini, and carrot. Frequently, the occurrence of cross-reactive IgE antibodies is not correlated with the development of clinical food allergy. In particular, the clinical relevance of sensitization to CCD is doubtful. Generally, pollen-related allergens tend to be more labile during heating procedures and in the digestive tract compared to allergens from classical allergenic foods such as peanut. However, recent DBPCFC studies have shown that both cooked celery and roasted hazelnuts still pose an allergenic risk for pollen-sensitized subjects. Since pathogenesis-related proteins share several common features with allergens and both the Bet v 1 and the Bet v 6-related food allergens are defense-related proteins, approaches to introduce such proteins as a measure to protect plants against diseases should be performed with caution as they may increase the allergenicity of these crops.

Very interesting and makes a ton of sense!

GFinDC Veteran

Thanks Holly,

I think you are right, it is better to get the vitamins from food than pills. When I did my elimination diets, one of the first things I always eliminated was vitamin pills. Especially multi-vitamin pills. It is hard to even find any that don't have soy or gluten or casein. Plus they are always suspect to me when they have so many ingredients.

Some of us have damage to our intestines at first and don't absorb pills/nutrients right. So people get the sub-lingual B-12 or sometimes liquid vitamins to take. But it seems like after a while with some healing the plain food option would be ok. I know I limit my vitamin pills a lot more now and usually don't take them every day, sometimes a couple times a week is all I do. Except for B-12, I try to take that daily.

It seems kind of funny that such a basic thing like food would be something we are just starting to begin to understand at this point. Maybe we aren't all that smart at all. Oh well! :)

Chiana Apprentice

It's hard to overdose on vitamins from natural sources because food sources rarely contain high enough concentrations of the vitamin. Though, a famous example is polar bear liver. It is unsafe to eat because it contains incredibly high levels of vitamin A.

About Accutane: I was on Accutane several years back. I was 13, covered in cysts, and very depressed. The thing is, I knew that 1. I was depressed because I was covered in painful, oozing cysts, and I was a pariah at school, and 2. that there was something very wrong with my body for my skin to get that bad in the first place. I don't think Accutane did anything to warrant the attention it has gotten, and I'm glad that I took it. I'm more inclined to think that people taking Accutane already have or are predisposed to these problems.

Another thing: the side-effects of Accutane always looked suspiciously similar to vitamin A poisoning. Just saying.

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    • Theresa2407
      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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