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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Hair Loss - When Will It Come Back?

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In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

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First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

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First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

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I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

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I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

True. Although I wonder why my iron went down after being on the supplements for 3 months? I'm so desperate to feel normal again and have hair, I may just start taking the supplements now. Like you said, it's got to be better than none. Thanks for the tip on B12, I'll have to look for it at the pharmacy. So much to learn.... :unsure:

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In addition to the iron and sublingual B12 also add in a biotin supplement and make sure that anything you are using on your hair is free of gluten. It usually takes at least 3 months to see any noticeable regrowth. I know how disheartening it is to lose so much hair but it should grow back. Do be very strict with the diet though as for some of us the hairloss can be related just as much to the autoimmune issues of celiac as it is to the nutritional problems. I still lose hair whenever I am glutened severely and it takes about a month for the shedding to stop.

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All good suggestions, but I added the B vitamins and Biotin and nothing happened. It was only when I took chelated zinc and BioSil that my hair regrew. It was absolutely emotional for me to see new growth all over my head! I wish this same thing to happen to you...

As for the iron, your doctor does NOT understand that you're unable to absorb iron. Most doctors won't give iron injections, and that's fine. However, it's possible to get iron infusions, and many doctors are unaware of this. Your doctor can order infusions, and if she doesn't know how much to prescribe, she can speak to a doctor or nurse who does know. You receive infusions at the hospital in their infusion clinic--you receive iron through an IV. I was unaware of this procedure until someone advised me on this forum. I was on iron infusions for nearly two years before my body was finally able to absorb iron. Without the infusions, I may have died. Please don't place yourself in harm's way--iron is crucial for good health, and if you're lacking in iron for longer than two years, you can begin to develop cancer because of low cellular respiration. If your doctor refuses to prescribe iron infusions, find another doctor. I'm serious.

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Rosetapper:

What type of thyroid medication did/do you take, and how much biosil are you using?

Thanks,

Karen

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In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

My iron was around 14 at its lowest and alopecia was definitely one of my symptoms. My level is still only about 25 after two years on supplements, but the hair loss was helped by taking iron pills. My hair is much, much better than it was, but is still not back to what it looked like about 5-6 years ago (before all my problems started). I took iron for close to a year before I really started noticing a difference in my hair though... I think it can take awhile.

BTW, some dermatologists who believe that hair loss can be caused by low serum ferritin say you need to get your levels back up to 50-75 to really have optimal hair growth.

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Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

I am not a doc but I don't understand why she wanted you to wait til you have been on a gluten-free diet to start supplements?? I had hair loss but I didn't wait for doc to tell me what I needed to take for supplements, as I would still be waiting at this point unfortunately. BioSil drops will help a great deal but make sure you get some zinc, B complex, iron and look at Primrose oil. I had a thyroid growth and belonged to a group for people with thyroid issues. The leader lost a whole bunch of hair and contributed Primrose oil for the regrowth. Her hair looks fantastic so it is possible, I've seen it with my own eyes.

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I take Armour Thyroid because I need both T3 and T4, and I take one capsule of BioSil per day. Of course, drops may be better for you, though, since you're currently having absorption problems.

I sure hope you follow through on requesting iron infusions. You seem like a good candidate for them--and shame on your doctor for not being knowledgeable enough to order them for you! All of my doctors at Kaiser had never heard of infusions, but one of them was willing to look into it. He called me soon after and told me that the Infusion Center told him that iron was the most common type of infusion. However, it appears that most doctors never got that memo...

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I've also had thinning hair problems and know how hard it can be to look in the mirror each day to see the damage. My hair dresser recommended taking biotin. When I first started taking it I didn't notice a difference, but after a few months and increasing my dosage, I noticed a big difference.

My doctor also put me on prescription iron supplements. And I switched to gluten-free shampoo and styling products. There are a bunch of threads on here with different recommendations on gluten-free products.

You said your thyroid was tested. Was it a regular TSH test? Or a T3 and T4 test. I read somewhere that you can have a regular TSH test but still have thyroid problems that are only detectable by testing T3 and T4 levels. There are a lot of people on this board way more knowledgable about the thyroid stuff than me, so maybe they can confirm if I speaking correctly about that.

Also, for me my hair got worse on the gluten free diet before it got better. So be patient. It's taken me several months for my hair to look better. At first I was very discouraged, but now I'm seeing progress.

And I'm definitely going to run out and get some BioSil and Primrose Oil to try.

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Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

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Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

You are right on track, and no this is not too much to combine. I think everyone of those products reads on the back that they should be taken with a meal. Do that to help with absorbtion. At first you might notice little change. The first thing I noticed was my hair was falling out. Zinc and Biosil are both good to for other things, I know it's not cheap and you may wonder if it is doing anything. I went off my BioSil to see if it was making a difference and my har started falling out again. I have not used the tablets. The drops taste terrible even in juice so if the tabs work, great! Let us know how it works for you!!

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My immune system is so weak I respond to eggs and dustmites like I have an allergy. (The allergy tests show very, very mild sensitivity, but my body says other wise. Hoping to get well now that I'm focuses on the celiac.) One symptom is hair weakness and thinning. As soon as I cut back my eggs, it goes away.

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@ rosetapper23...

Is it really true that you can get cancer from having low iron stores for over 2 years??? That's very worrying, I was diagnosed (finally after many years) with celiac and a ferritin level of 2.4. I'm in supplements now, it's going up very slowly but this is worrying as I have always been on the low side for ferritin due to being vegetarian.

How high are these cancer/low ferritin risks, do you know?? :(

Ps my hair seems worse after taking iron for some reason, it's so so thin, I can't even look in the mirror... And find it hard to touch it...

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In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

 

I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

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I have spent a lifetime growing (and regrowing) back my hair.  Seems like anything will make  it fall out, including gluten.  But also antibiotics, and anti-rheumatoid drugs like methotrexate,  and now anti-coagulants.  Seems like everything that is anti- something is also anti-hair :lol:   Forrtunately, so far, it always does eventually grow back in, or I would be bald  :wacko:

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I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

 

 

 

Testing for celiac is a blood panel, then an endoscopy with biopsy (not a colonoscopy) if that changes your mind at all. (technically, there is no

gluten allergy--do you mean you are allergic to wheat?)

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    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

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    • Read the newbie 101 make sure your doing everything right, removing diary and oats is normally suggested for the first few months. Also make sure you threw out contaminated scratched pots, crumbed condiment jars, cutting boards etc.
      https://www.celiac.com/forums/topic/91878-newbie-info-101/

      To help with the fog try this combo, Liquid Health Stress & Energy, and Liquid Health Neurological Support 1 tbsp each 3 times a day. Also to help with fatigue and brain issues you need to take magnesium which is a common issue with this disease, here depending on your bowl habits depends on what you need. If you have constipation then Natural Vitality Calm, take 1/4tsp (1-2g) at first and up it every day 1/4tsp (1-2g) to the full dose or til you get loose stools then back it back down dosing to tolerance. If you have normal daily bowl movements get Doctors Best Magnesium powder and take as suggested, night works best.
      Iron, to help absorption you have to take it with vitamin C other wise your going to have more issues, topped with damaged gut and body constantly healing you need the help. I use Vegan Protein Powders like Jarrow Pumpkin, Naked Pea, Growing naturals pea, Julian Bakery Pegan (both plain which is sancha inchi, and the cinnamon twist which is pumpkin), MRM Veggie elite etc all of which are high iron, magnesium, etc and great for working out, recovery. It took the first 2 years of healing before I started being able to step up my work out regime....I am now body building and working out most of the week. I personally follow a Paleo/Keto diet to manage other conditions and it keeps a lean and muscular build sustainable due to the higher protein, fats, and iron intakes and this disease.

      Zinc might also be needed, which you can get in lozenges...if the lozenges taste like metal then your good, your body lets you know by the taste if it needs it or not.
    • And there’s that brain fog. I went gluten-free the day of my biopsy. The doctor said to keep eating gluten up until then even though we knew it was damaging based on the blood work.
    • If you have waited a whole year to go gluten-free - being diagnosed last May- it is going to take longer than a month to feel better.  You spent a whole year knowingly hurting yourself.
    • Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late March with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions.  When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet? At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts?  The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this? sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.
    • hi i have to go for blood test on wednesday 25th, celiacs is new to me i was actually being treated for thrush which was not clearing up and fell upon the celiac thing as i had changed my eating hapits and realised i felt totally different when i did not eat wheat products.  as i have returned to eating gluten after a two week break,    the thrush is flareing up again i have some medication which will see me past the screening date, but until i go gluten free i dont see how the thrush will clear up its becoming uncomfortable  i have all the symptoms back including joint pain constant wind etc, should i go to get the test done early and then contact doctor so i can stop eating gluten to clear up thrush as i feel to have to wait for the results and then wait for endo my become unbearable
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