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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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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I have trouble absorbing my supplements.  I chew tablets and open capsules now!  Maybe you could do this?

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    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
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