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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.

Alopecia, Sjogrens And Gluten Intolerance
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21 posts in this topic

Hi,

my sister has not been diagnosed celiac or gluten intolerant, however, she has a number of symptoms of autoimmune disorders and the doctors just can't figure out the primary cause.

Her most recent experience is alopecia (a larger than quarter sized patch of hairloss on the scalp that continues to get larger). She also has symptoms of sjogrens, but has not formally tested positive. She also has several symptoms of hypothyroidism, but again, continues to test negative on that. She did have the TTG Iga test done for celiac, but that came back negative (as did mine). I have mentioned to her that she should try going gluten free to see if it alleviates symptoms, but to date I don't think she has tried the diet. I am just wondering if anyone else has experienced these symptoms (I expect so as I know Sjogrens and hypo-thyroidism are linked to celiac/gluten intolerance, but am particularly curious about the alopecia??)

Thanks

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Hair loss is sometimes a problem for celiac patients because they are not absorbing nutrients properly.

Vitamin B is often the one that causes the hair problem.

I would obviously suggest that your sister goes and gets some tests for celiac disease, also she could try a multivitamin or vitamin B supplement.

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We have two family members that have seen alopecia resolve gluten-free. It is an autoimmune attack on the hair and definately gluten related for many of us. For some celiacs the hair lose is nutrient related, for them restoring the nutrients will help, for those of us that have had this occur as an autoimmune reaction we need to be very strict with the diet including toiletries and nonfood items as even a small amount of gluten will keep the autoimmune process going.

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Thank you both....After posting this question I did a little bit of searching on the relationship between alopecia and gluten and it appears there is a connection between the two. I believe her hair loss would be autoimmune related vs. vitamin deficiency...hers is true alopecia where she has a quarter sized spot absolutely bald, but the rest of her hair is fine so far. I think (but stand to be corrected) that a vitamin deficiency would cause more general hair loss vs the very telltale baldness of alopecia....Alopecia is classed as an autoimmune disorder, it just seems like the trigger is not yet known. I plan on passing on to her the info I've found about the linkage and see if I can convince her to try gluten free for a month or two just to see how she feels. She is using a topical steroid cream for the alopecia, but it doesn't seem to be working too well...

Thanks!

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My son had Alopecia 5 years ago. His started out like your sisters and it slowly fell out in a circular fashion over about 5 months. He had a huge bald circle on one side of his head towards the back. At the time I did not know about gluten. I was hypothyroid though so he was check and ok. Through my research I found a miracle. It is called Kalosol. You can find it at Kalosol.com. It is special essential oil blends. We use the shampoo, a special lotion and pure oils. There was a whole protocol. The enventor was a sufferer himself as a child. He spoke to me several times from England. He let me pay over several months because I didn't have enough money. Within a couple weeks he had white fuzz in the spot. Within a month he had white hairs growing in (these are like baby hairs. We started in April and by September he had a full head of hair. It slowly darkened back to normal color. Exactly a year later I found another quarter size spot. We immediately started the protocol and his hair grew in in 3 weeks(much smaller spot). He has had a lot of success especially with children. He has since been tested for celiac and the results were neg. I have gluten intolerance, so he eats at least wheat free most of the time.

There are 4 tests that you need to have to show celiac, but I would just have her go gluten free to see. There are so many false negatives.

Regarding thyroid. Your doc needs to do the whole panel, not just the TSH. This test is useless. It only catches issues 45% of the time. Your sister needs to get the thyroid peroxidase antibody test. They should be less than 9. If elevated it will show she has Hashimotos Hypo and autoimmune version. Check out the many other threads on here to read more about thyroid. Good luck and feel free to pm with questions.

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Hi everyone.

This is the first time I have ever joined a forum of any sort even after more than a dozen years on the net. I am not gluten intolerant but have a simple allergy to gluten or wheat. I have suffered severe regular headaches for over 30 years (I am 46) and through a process of elimination came to the conclusion that wheat was the culprit. Since cutting wheat and other gluten sources from my diet about 8 months ago I remain almost headache free except for the occasional slip when against my better judgement I will indulge in a pizza or crusty loaf of bread and suffer for the next 2 or 3 days. I have also been losing my hair since I was in my early twenties which I was ok with. However, in the last couple of months I started to notice my hair seemed to be getting thicker on top. I have been keeping my hair very short for the last dozen or so years beacause it seemed pointless trying to grow anything that resembled a style. The last time I got my hair cut a couple of weeks ago the normally sparse runway that had been the top of my head was showing signs of filling in. I have now got more hair on the top of my head than I have had in 10 years or so. That was in fact how I found this forum after doing a search on why someone would regrow hair after losing it. Who would have thought a food alergy could have been responsible? I guess I have got you guys to thank for providing the explanation. So thanks.

Bengt...

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Glad you found the thread and found it a helpful explanation for your hairloss. The more stories I can share with my sister, the more I am hoping she will try a gluten free diet to reduce her symptoms, the alopecia being just one of a few autoimmune disorders.

Good luck and hopefully you find some more linkages in this site as to how an intolerance to wheat or gluten may be affecting you. Sometimes the connections aren't obvious until someone else mentions it and then you realize that what you were experiencing wasn't normal...I'm a firm believer that if a person is allergic or intolerant to a substance it is more than just a nuisance...the reaction can manifest in many ways and years of the body bearing the brunt of something it can't tolerate will eventually start to cause more severe issues somewhere. Glad you figured out the source of your headaches and as a bonus you get your hair back!! :D

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Hi,

but am particularly curious about the alopecia??)

Thanks

Hi healthygirl,

I recently found out I am serum ferritin deficient and have been reading a lot about iron deficiencies. Alopecia is related to serum ferritin. It is not part of the routine CBC and must be ordered as a separate test. Do a search for them together and you will find plenty of information!

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Thanks, Joni....I'll pass that on to my sister as well... :)

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I have the same problem..My cousin lost his all hair..His disaese is ALOPECIA..Doctors said it happens from stress or a bad memory..We can't find any solution about the disaese..

loraleena talks about a web site Kalosol.com but the site don't open so i can't find anything about the solution..If you know anything i wanna help..We have a terrible mood..My cousin is 5 and he is bold..He lost his eyebrows..He can't go out without a hat..

Thanks for your help and sorry about my bad english..

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I have tried to find the karasol product - any idea of where to find it?

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Hi everyone.

This is the first time I have ever joined a forum of any sort even after more than a dozen years on the net. I am not gluten intolerant but have a simple allergy to gluten or wheat. I have suffered severe regular headaches for over 30 years (I am 46) and through a process of elimination came to the conclusion that wheat was the culprit. Since cutting wheat and other gluten sources from my diet about 8 months ago I remain almost headache free except for the occasional slip when against my better judgement I will indulge in a pizza or crusty loaf of bread and suffer for the next 2 or 3 days. I have also been losing my hair since I was in my early twenties which I was ok with. However, in the last couple of months I started to notice my hair seemed to be getting thicker on top. I have been keeping my hair very short for the last dozen or so years beacause it seemed pointless trying to grow anything that resembled a style. The last time I got my hair cut a couple of weeks ago the normally sparse runway that had been the top of my head was showing signs of filling in. I have now got more hair on the top of my head than I have had in 10 years or so. That was in fact how I found this forum after doing a search on why someone would regrow hair after losing it. Who would have thought a food alergy could have been responsible? I guess I have got you guys to thank for providing the explanation. So thanks.

Bengt...

Hi

I've been reading this post periodically for over a year now...while I have become sicker & weaker. My celiac sprue test was NEGATIVE in 2007, as was my sjogren's test, and a test for rheumatoid arthritis was read initially as positive, then negative by a subsequent doctor! I have developed every one of the symptoms of both in the last 5 years or so, with the exception of visibly reddened joints.

I even tested negative for allergy to gluten. I thought I was nuts, but as of a couple of months ago, I became unable to eat anything w/out pain. My doctor had me take another celiac test - and this time it was positive. I have a biopsy Friday. My hair has thinned out to the point where I cut it short, so it doesn't look wispy. My joints hurt most of the time now, and I haven't the energy for much of anything. I would read your post and think about re-growing my hair. Not one the vit B supplements I have bought have helped at all. Nor has Propecia or Rogaine. My belly is inflamed and swollen whenever I eat.

Now, after changing my diet - maybe I can one day eat food again painlessly, and maybe my hair and strength will come back. Maybe I can run again, and put on a pair of jeans. I hope you have a full mane by now. If you do go back to wheat and have problems - take the celiac sprue test again. It is one of the most inexact blood tests there is!!

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Hi

I've been reading this post periodically for over a year now...while I have become sicker & weaker. My celiac sprue test was NEGATIVE in 2007, as was my sjogren's test, and a test for rheumatoid arthritis was read initially as positive, then negative by a subsequent doctor! I have developed every one of the symptoms of both in the last 5 years or so, with the exception of visibly reddened joints.

I even tested negative for allergy to gluten. I thought I was nuts, but as of a couple of months ago, I became unable to eat anything w/out pain. My doctor had me take another celiac test - and this time it was positive. I have a biopsy Friday. My hair has thinned out to the point where I cut it short, so it doesn't look wispy. My joints hurt most of the time now, and I haven't the energy for much of anything. I would read your post and think about re-growing my hair. Not one the vit B supplements I have bought have helped at all. Nor has Propecia or Rogaine. My belly is inflamed and swollen whenever I eat.

Now, after changing my diet - maybe I can one day eat food again painlessly, and maybe my hair and strength will come back. Maybe I can run again, and put on a pair of jeans. I hope you have a full mane by now. If you do go back to wheat and have problems - take the celiac sprue test again. It is one of the most inexact blood tests there is!!

Welcome to the board. You story isn't unusual which is why we stress so hard to try the diet when testing is done no matter what the results are. While I am not happy that you have to deal with this I am happy you are finally diagnosed. Do read as much here as you can and ask any questions you need to. Check all supplements and drugs and be strict with the diet. You may want to add a vitamin specific to hair and nails to your supplements. I take one by Country Life daily. I hope everything resolves for you soon but be patient as it can take us some time to heal.

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I have all the symptoms of sjogren's, dry mouth/eyes, stickier mucous, (it will also effect your lungs) and my dentist certainly can see its effects, as can my eye doctor, but the dingbat rheumie I made the mistake of wasting money on, (after a phone interview where they pretended to express familiarity with autoimmune arthritis) tested me for the antibodies and of course I didn't have them so he of course tells me I don't have it. He neglects to mention that it is perfectly possible to have a false negative on this test, also, as not everyone with sjogrens has the antibodies. I was also neg for other inflammation proteins and one of the genetic arthritis markers, but the piece de resistance was I had brought x rays with me, that had impressed other doctors showing various bad things, and he tells me everything is normal, there too. Because I cannot have arthritis if my knee is not swollen. I mean, my knees will puff up sometimes, but not on cue, and not during some years.

Keep taking the vitamins (gluten free) and the mineral supplements like calcium & magnesium, after you go gluten free, and your hair will grown back provided you don't also have full blown thyroid problems.

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Thank you for the encouragement. My genetic tests came back pos for HLA-DQ 8. I was surprised, because I fully expected the doctor to tell me there was nothing medically wrong with me and I ought to see a psychiatrist. However, I am trying now to be strict. I was practically already gluten free with one large exception - I had taken to medicating myself over the past two years with a beer or two in the evenings. It disconnected me from the dyspepsia and allowed me to eat an evening meal without anxiety and discomfort. I don't like wine (and sometimes get asthma from it) and can't tolerate any other form of alcohol. But it has been surprisingly difficult to discontinue my nightly beer, even knowing what I know now!! All I can do is radically change my physical habits (i.e. be out of the house at the accustomed hour and not even try to eat past 4 pm) I am hypothyroid, and have been treated for 8 years.

An interesting additional fact - I read in one report that the DQ 8 gene is less common than the DQ 2 gene in celiac sufferers, but is also linked to rheumatoid arthritis and Sjogren's, both of which I have had symptoms for (particularly Sjogrens- I'm with you there - I have all its symptoms, but tested neg) The other surprising struggle I'm having is with the depression. I have felt so weak - and have rather let myself go, it seems to be very difficult to maintain the self-care necessary for recovery. I gave up a couple of years ago and despaired of ever feeling good again, (or wearing a pair of fitted jeans) and it's been really hard to change gears, when I should be relieved, overjoyed that I can recover, and working toward a new lease on life! I feel even more upset with myself. Has anyone else experience this?

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A year ago my daughter lost hair at the crown of her head. The dermatologist diagnosed it as Alopecia and fortunately now 14 months later it is about 2 1/2 inches long. Anyway this past month a Celiac panel was done and it turned up positive on the DGP IGA and IGG. It was negative on both the TtG and EMA tests. From what I have read there is quite a connection. Today I read about how Alopecia is linked to both Celiac and Type 1 Diabetes. My recommendation is to get tested including the DGP test. The DGP test is considered as accurate as the TtG test. I'm trying to figure out why a positive on the DGP but not the Ttg. Tomorrow is the biopsy and hope to get a definite answer.

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Thank you for the encouragement. My genetic tests came back pos for HLA-DQ 8. I was surprised, because I fully expected the doctor to tell me there was nothing medically wrong with me and I ought to see a psychiatrist. However, I am trying now to be strict. I was practically already gluten free with one large exception - I had taken to medicating myself over the past two years with a beer or two in the evenings. It disconnected me from the dyspepsia and allowed me to eat an evening meal without anxiety and discomfort. I don't like wine (and sometimes get asthma from it) and can't tolerate any other form of alcohol. But it has been surprisingly difficult to discontinue my nightly beer, even knowing what I know now!! All I can do is radically change my physical habits (i.e. be out of the house at the accustomed hour and not even try to eat past 4 pm) I am hypothyroid, and have been treated for 8 years.

An interesting additional fact - I read in one report that the DQ 8 gene is less common than the DQ 2 gene in celiac sufferers, but is also linked to rheumatoid arthritis and Sjogren's, both of which I have had symptoms for (particularly Sjogrens- I'm with you there - I have all its symptoms, but tested neg) The other surprising struggle I'm having is with the depression. I have felt so weak - and have rather let myself go, it seems to be very difficult to maintain the self-care necessary for recovery. I gave up a couple of years ago and despaired of ever feeling good again, (or wearing a pair of fitted jeans) and it's been really hard to change gears, when I should be relieved, overjoyed that I can recover, and working toward a new lease on life! I feel even more upset with myself. Has anyone else experience this?

I know there are a lot of people who can offer support and insite here. I don't know if you are aware that depression is common with Celiac's who are not gluten free. I have been there. And although I don't recommed beer to solve any problems, I know there are gluten free beers. I have tried Redbridge? I think that is the name, and it tastes like real beer.

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I've had severe hair loss (I've lost about 50 to 60% of my hair.. :( If you're having malabsorption issues the best supplements to take are administered sublinqually, if your body can't absorb vitamins it won't matter if it's from food or supplementation. The doctors weren't sure what and still aren't my problems are but do say I have a problem with absorption of vitamins. I now give myself B12 shots & take sublinqual B's & sublinqual D3. I regrew all my hair but had a set back & began losing hair again & began to have a LOT of Beau's lines on my fingernails. I checked & the vitamins I was taking didn't have Biotin which I hadn't realized unfortunately. Hopefully, my hair will start come back this time! Good luck.

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Hello I thought I would throw my 2 cents in to this topic :)

I started losing my hair in bits through out my teenage years and twenties. Nothing to serious, I actually had really beautiful hair. After having my daughter when I was thirty it got a bit nuts. I lost almost 60% of it. I stopped breast feeding and it got better.... then I got sick when she just turned 1. I had chronic pnuemonia, bipolar, arthritis, anemia etc....

After they found the fist size tumor and removed my lung along with it I felt better. My hair was doing well and I felt pretty good considering. A few months later I got sick again and my hair started falling out aggressively. My brilliant friend suggested I had celiac. I went gluten free and my eyebrow started growing back. I was thrilled! My test came back negative but I insisted on doing an endoscopy. Sure enough I had extensive damage to my intesines. I am 100% celiac. I have been tested for everything under the sun at this point. Unfortunately by bald spots spread, I have no hair on my legs and arms anymore. I don't even have nose hairs. I am losing the last of my eyelashes now.

I get b12 shots once a month, I take silica, I take vitamins and I am religously gluten free. I am also completely bald now. There is nothing that can be done in some cases, as we all know when 1 autoimmune pops up others usually follow.

On a positive note, I no longer have bi polar, arthritis or anythng else other then being bald and some what lacking in vitamins. Hope this helps add to the pile of information out there!

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I have sjogrens. I've had inflammatory arthritis since age 9. Mydoc was convinced I had sjogrens even tho my Ana wasnormal until recently & it came definite for ss. Definitely bad. So, I'd say in all my years with rheumatic disease & seeing countless ppl told they have fibrio only to find out later they have RA,lupus. Ss, etc ,I'd say get a good rheumatologist, go to some arthritis foundation events, andu will find ppl who recognize you are seronegative for now.

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