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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 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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LauraZ

Scalp Problems

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Hi all,

My first post! I'm so glad to find this forum. It is so nice to find a place where everyone is in the same boat as you...

My recent past:

In January, my scalp started doing strange things. It had patches where the skin had thickened quite a bit. I could push it around with my finger tips, and even pry some of it off (it looked like flakes of oatmeal). Well, the MD had no idea and the dermatologist called it a generic dermatitis and gave me some topical treatment. He said these things tend to be chronic and I should come back when all of my refills ran out. Problem was, when I didn't have the medicine on it (betamethasone), it returned. And then other things started to happen -- got a red rash on the back of my neck, the skin around my eyes (my left more than right) started to dry up and turn red and crevassed. The corners of my mouth were cracked and painful, I had dry skin around my nose and along my hairline. Sometimes my eyelids would swell.

My scalp started doing other strange things -- it would ooze so much in some spots that my hair was damp and when the oozing dried up the dandruff was so severe it was like a snowstorm when I shook my head. It would cycle between oozing and flaking. It was severely itchy as well.

Finally someone recommended a naturopath. She gave me the ELISA food allergy test and it came back highly reactive to dairy and wheat and wheat gluten. She told me that people who were positive for wheat gluten could still have barley and kamut, oats, etc. so I continued to eat those in moderation.

My skin/face problems cleared up completely after about 4-6 weeks without dairy/wheat The dandruff/oozing lessened but didn't clear up.

After a month of being off my allergenic foods, my hair started to fall out!

The naturopath had also run a panel on a stool sample and my Total Intestinal IGA was incredibly low (59, where normal was between 400-880). And I tested negative for the gliadin test, which was IgA based.

She was at a loss to explain my hairloss, so I went to another food allergy specialist ND, who said to give up all gluten grains. At the same time I started reading about DH and celiac disease. The ND is running a celiac test on my blood, but I haven't gotten the results back yet. It may be negative, he thinks, because I just may not produce enough IGA to have it a valid test. But he said it's our first step.

I've been completely gluten-free for about 3 weeks now and my hairloss is slowing down but hasn't stopped. It's been reduced by about half. But my scalp still gets these bits of oatmeal-like growths that I can peel off. And it is still flakey (but not nearly as severe as it was.)

Has anyone had any experience like mine? Do you think it's DH? I couldn't tell if the oozing was coming from scratching the blisters of DH, since it was buried beneath my hair... And I'm wondering how long I'll need to be gluten-free before my hair loss completely stops. Any help/words of wisdom is greatly appreciated!

Thanks for reading!

LauraZ

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Hi Laura! Welcome to the board!

My celiac never involved DH so I can't help you with those questions, but I wanted to make sure you had your thyroid checked. Dry skin, patches on scalp, hair loss, etc. all are symptoms of thyroid disease also.

Karen

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Thanks, Karen. Interesting you mention that -- Thyroid problems run in my family -- my uncles and cousins all have it. Mine has been checked and shown to be normal... Is there is another type of test that is more sensitive that I should request? My knowledge of thyroid tests is minimal...

Thanks!

Laura

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My sclap problems are only at the back hairline. Blisters and oatmeal flakes also.

I am finally pretty clear, started gluten-free in March. I think it takes some time to get your diet under control. Currently, it only takes a small amount of Gluten to set me off.

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Oakpoint, do you have any other symptoms besides your scalp? And have you tested for celiac disease? I"m also curious if your scalp problems came on all of a sudden, or if you've had them most of your life.

I just got my results back and they were negative for celiac disease, but I live gluten-free just because those skin problems are set off so easily.

I take my own hair care products into my hair salon because he uses a lot of grain-based products. Well, I was just there and we were vigilant about shampoo, conditioner, etc. and at the very end he gave me a quick spritz of something we didn't check out beforehand and, sure enough, by that evening my scalp was oozing.

It's annoying how sensitive my scalp has become, but on the bright side, I went for so long without knowing what was causing my problems that at this point, I'm just thrilled that I can isolate the origins of these outbreaks...

Laura

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Hi,

Its embarrassing, but for the sake of community and knowledge, I have been losing my hair as well (girl in her 20s). It seems to have slowed though being on my gluten-free diet, though I have made some mistakes and I am starting to think that I have allergies to other things as well. Maybe after all allergens are removed from the diet, this will stop? I also have hypothyroidism, though I am currently controling that with Synthroid (and have been for several years). I do have some spots on my scalp that itch, but don't ooze; however, I think it is psoriasis (sp? - an autoimmune disorder that may be associated with celiac disease). I started to use rogaine to combat the hair loss, but I don't think it helps.....however, now I am afraid to stop using it, with the thought that stopping it may cause more, permanent hair loss. Thank god my hair loss isn't bad....no noticeable scalp when my hair is done....more like a diffuse thinning. Sorry to not be of much help, but just here to let you know that you are not alone and hair loss is associated with celiac disease. Good luck.

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Thank you so much for your reply, Bobcatgirl. It is an embarrassing situation. I'm mortified at the hair that comes out.

Last week I did a fruit and vegetable fast for four days. It really isn't too bad because you can eat all you want -- as long as it's fruit and vegies. After the fast was over, my hair loss was really reduced. Every day is a little different, but I've had quite a few days of "normal" loss since the fast. Must be still getting something in my normal diet (although gluten-free, dairy-free, egg-free) that isn't agreeing with me...

Best of luck to you.

Laura

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Your diet sounds similar to mine, and I was still getting sick (this past week in particular). So, out of ideas, I thought of corn - I avoided corn as best I could (not sure if it is in Yasmin or Synthroid, both of which I take) and noticed a difference in a few days. Maybe this will help?? I have been hearing a lot recently about potato/Nightshade family allergies too...... so frustrating.

Also, about the hair loss - I can't remember specifics, but I think it was Shape magazine that had an article about Celiac Disease in it, maybe a month or two ago. In the article, they mention hair loss as a symptom. Its good to know we aren't alone......

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I do have to take another look at corn. I had been adding it in more heavily than usual (not many grains to choose from).

Interesting you mention nightshades... I had been having some finger joint pain and read an article in Living Without (great magazine for celiacs and people with other allergies) that said removing nightshades from your diet can reduce joint pain. I do notice a difference if I cut back on those but my goodness, after a while there is just nothing left to eat...

My diet always seems like it needs to steer towards the paleolithic diet, but gosh, that's a hard one to commit to...

Laura

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Finally!!!! Someone else having exactly the same thing I have had for almost two years now. I have not had the redness on my face but in Jan. 04 I went to the derm. to get some rx shampoo for my severe dandruff which cropped up all of a sudden. The derm. gave me a prescription of one of the two main types (Loprox I think) of rx shampoos and sent me on my way. I didn't like her so when the problem didn't clear up I just asked my internist to give me another prescription for the other type of rx shampoo. She told me I could alternate the two types which I did for several months and still very little improvement. My scalp (only in two areas) was super thick and like you said I can scratch and pcs. of it come off - just like dry oatmeal. Anyway, this spring when I found out about my anemia by my new derm. no less, he gave me a wonderul topical steriod but it works only as long as I use it and it's not intended for long term use. Reading your note I'm sure now this dermatitis is related to something I'm eating. I'm still in the process of waiting for more tests but hopefully I'll start my gluten-free diet next month and things will get better. Also for about two years my hair has been very slowly thinning. My hair was always fine but hairdressers used to complain that I had so much of it. Now it's thin and fine - not a good combination to say the least. Anyone know if Biotin (otc supplement) can promote healthy hair growth?

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I have been DX'd with DH by biopsy. My scalp problems were very similar to those described until I went on a strict gluten-free diet. I think it took a couple of months for my head to completely heal, but I rarely have a flare-up now unless I get glutened. I do have flare ups when I take anti-inflamatory drugs such as Aleve and Motrin even though they are gluten free.

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Laura-

I would definitely explore psoraisis as bobcatgirl mentioned. I have it all over my scalp--its really bad at present and can be described the same as yours. Go here to see 2 pics of rather bad psoraisis to compare. Sometimes they will ooze and bleed after picking. http://www.psoriasisfishcure.com/virtualto...asis_plaque.jpg

http://psoriasisartrit.se/files/488/psoriasis_narbild.jpg

There are different prescriptions you can try--temovate, dovonex, elidel or two nonprescription shampoos--Nizoral and Sebutone. You can rub them into your scalp and let them soak for a bit. I am still hoping my will improve after being gluten-free longer. I think it would definitely be worth looking into. You will probably need to be patient on its improvement since you have only been gluten-free for 3 weeks. PS---Have you cked on the gluten-free status of your tolietries, makeup?

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someone else that has the same thing i have!! what a pain. though never been diagnosed as DH. it starts itching super bad, then comes the oozing, then the thick skin and dandruff. no dandruff shampooes or remedies have ever worked. i do have some luck with all natural shampoos..but even then if i dont watch what i eat, i can count on a full blown breakout in my hair (like now!).

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I have to say I am thrilled I am not alone in these bizarre symptoms. I am happy to report that after 7 weeks of being gluten-free, the hair loss stopped. It has been a couple of weeks now, and every day in the shower, I still worry that it might not last. But when I take my hand away from my hair after shampooing, and there is nothing there, or just one or two strands ... well, I could just laugh and cry at the same time.

I still have two little patches where I get those oatmeal peelings, but they, too, don't seem to be as thick as they were.

FloridaNative, have you started your gluten-free diet yet? I think it will resolve your problems, but it does take awhile! I don't know if this is similar to Biotin, but I did get some BioSil, which is a healthy hair supplement. I'm not sure if I noticed a difference with it, since I was taking it as I was going gluten-free. My guess is that the gluten-free is the most important thing.

The one strange side effect is that my previously bone straight hair now is getting curly. Very strange...

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I have to say I am thrilled I am not alone in these bizarre symptoms. I am happy to report that after 7 weeks of being gluten-free, the hair loss stopped. It has been a couple of weeks now, and every day in the shower, I still worry that it might not last. But when I take my hand away from my hair after shampooing, and there is nothing there, or just one or two strands ... well, I could just laugh and cry at the same time.

I still have two little patches where I get those oatmeal peelings, but they, too, don't seem to be as thick as they were.

FloridaNative, have you started your gluten-free diet yet? I think it will resolve your problems, but it does take awhile! I don't know if this is similar to Biotin, but I did get some BioSil, which is a healthy hair supplement. I'm not sure if I noticed a difference with it, since I was taking it as I was going gluten-free. My guess is that the gluten-free is the most important thing.

The one strange side effect is that my previously bone straight hair now is getting curly. Very strange...

<{POST_SNAPBACK}>

Congratulations,!!Isn t it wonderful?can you please give a list of all the foods that you have eliminated?what about sugar?

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I am currently off all gluten and all dairy. I have been off sugar and eggs, too, because I tested moderate for them and initially I was reacting to even those lower-reaction foods. I have been able to have a little sugar with some success and today I tried eggs, after 6 months without them.

Just last week, I had a nutritionist give me a fantastic explanation for why we react to more foods than we may truly have problems with. She said that the gluten and dairy proteins are so big and destructive, that they "pit" your stomach lining, creating this leaky gut syndrome. Because your stomach has these pits in its lining from the gluten and dairy, the other foods (like sugar and eggs) can get through them. So if you take a test while your gut is leaky, the foods you eat often will show reaction, simply because they are escaping into the bloodstream through those pits.

Once the pits are healed up, the smaller food particles will go through the digestive system like they are supposed to.

All very interesting...

I'm keeping my fingers crossed on the eggs!

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Thank you laura,please give an uppdate on egg.

My son is also gfdf,soy free and egg free,it is now 5 month and I am going to intoduce egg again,but don t dare .He also had hair loss which is much better now.

how was your hair loss ?was it patchy?

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FloridaNative, have you started your gluten-free diet yet? I think it will resolve your problems, but it does take awhile! I don't know if this is similar to Biotin, but I did get some BioSil, which is a healthy hair supplement. I'm not sure if I noticed a difference with it, since I was taking it as I was going gluten-free. My guess is that the gluten-free is the most important thing.

Nope - I'm not gluten-free yet. Colon test was first (insurance!) and I am going to have the biopsy but in the meantime I'm seeing a specialist who deals with anemia (my worst ongoing symptom) so it will be a while before I find out if I have celiac disease or not.

My dermatologist recently told me that if my anemia clears up so will my scalp so I have hope. He gave me a non-steroid topical solution since I have to use it every day or otherwise the itching will drive me batty! I'm glad to hear your wonderful news!

Tiffany M.

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Thank you laura,please give an uppdate on egg.

My son is also gfdf,soy free and egg free,it is now 5 month and I am going to intoduce egg again,but don t dare  .He also had hair loss which is much better now.

how was your hair loss ?was it patchy?

<{POST_SNAPBACK}>

So far, so good on the eggs. It has been 4 days. It would be so great to get eggs back. So many great gluten-free bread recipes use eggs...

My hair loss was pretty much spread throughout my head. At one point, it was so much that I could run my hand over my scalp and feel the little bristles all over of the new growth. I guess I was just happy there *was* new growth. I understand some people lose it permanently...

Good luck with eggs and your son!

Laura

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Hello Laura,

Did you have any more egg?I didn t dare to give my son yet,but would you please tell us if you had more eggs,and how many days were in between.

thanks elisabet

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I have to say I am thrilled I am not alone in these bizarre symptoms. I am happy to report that after 7 weeks of being gluten-free, the hair loss stopped. It has been a couple of weeks now, and every day in the shower, I still worry that it might not last. But when I take my hand away from my hair after shampooing, and there is nothing there, or just one or two strands ... well, I could just laugh and cry at the same time.

I still have two little patches where I get those oatmeal peelings, but they, too, don't seem to be as thick as they were.

FloridaNative, have you started your gluten-free diet yet? I think it will resolve your problems, but it does take awhile! I don't know if this is similar to Biotin, but I did get some BioSil, which is a healthy hair supplement. I'm not sure if I noticed a difference with it, since I was taking it as I was going gluten-free. My guess is that the gluten-free is the most important thing.

The one strange side effect is that my previously bone straight hair now is getting curly. Very strange...

<{POST_SNAPBACK}>

I am new here and have always wondered why I got these weird flare ups on my scalp.. I also wondered why they were thick patches that would come up. They almost looked like white puzzle pieces on my scalp- gross. My hair has also been falling out more often..

I'm on my 3rd day of gluten-free- can we eat oats? Still not sure on that one.. Also, how do I find out about my make up and such?

Thanks,

Katie

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Katie-your scalp sounds alot of like psoriasis... and no oats...even if they were ok to eat, they are pretty much always contaminated... :(

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I am new here and have always wondered why I got these weird flare ups on my scalp.. I also wondered why they were thick patches that would come up. They almost looked like white puzzle pieces on my scalp- gross. My hair has also been falling out more often..

I'm on my 3rd day of gluten-free- can we eat oats? Still not sure on that one.. Also, how do I find out about  my make up and such?

Thanks,

Katie

<{POST_SNAPBACK}>

Do a search for posts on makeup searching your brands. There have been lots of posts on this topic. Burt's Bees Lip sticks are gluten-free, that's what I use. Also, all the "regular" flavors of Chapstick brand chapstick are gluten-free.

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Hi all,

Finally someone recommended a naturopath. She gave me the ELISA food allergy test and it came back highly reactive to dairy and wheat and wheat gluten. She told me that people who were positive for wheat gluten could still have barley and kamut, oats, etc. so I continued to eat those in moderation.

My skin/face problems cleared up completely after about 4-6 weeks without dairy/wheat The dandruff/oozing lessened but didn't clear up.

After a month of being off my allergenic foods, my hair started to fall out!

The naturopath had also run a panel on a stool sample and my Total Intestinal IGA was incredibly low (59, where normal was between 400-880). And I tested negative for the gliadin test, which was IgA based.

She was at a loss to explain my hairloss, so I went to another food allergy specialist ND, who said to give up all gluten grains. At the same time I started reading about DH and celiac disease. The ND is running a celiac test on my blood, but I haven't gotten the results back yet. It may be negative, he thinks, because I just may not produce enough IGA to have it a valid test. But he said it's our first step.

Thanks for reading!

LauraZ

<{POST_SNAPBACK}>

I only just saw this post. Maybe you are still tracking it. Your Naturopath is not doing so well. She should know that hair loss is frequently caused by Celiac. Also telling you that you could still eat "barley and kamut, oats, etc." is negligent. These foods are absolutely not gluten-free (except for oats which is considered to so so wheat contaminated in the US that it has to be omitted). All the grains - wheat, barley, rye, kamut, splet have gluten. You can check this out. Claire

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well for all this complications you better see a specialist

only he will be able to help you right now

as this has become a serious issue you better visit him soon

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    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
    • BoliviaB, DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten. However I want to go/see that the parasite route has also been exhausted. The fever's (for most Celiac's anyway) are not typically but low grade inflammation is. I had annual bronchitis issues and ear aches that went away after stopping gluten. You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug. A blood test will confirm that the Chagas parasite's were killed with your AB's round. Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control. I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications. If you are having your blood drawn again it should be (re)checked. In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood. Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems. https://www.cdc.gov/parasites/chagas/disease.html quoting "a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas. if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it. I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago. http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html  If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite. The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population. quoting again "In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite). This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia. The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two. **** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten. I hope this is helpful. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God, ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.  https://www.cdc.gov/parasites/chagas/gen_info/screening.html Again I hope this helpful.    
    • Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.  Rye Barley Spelt Wheat Oats  Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs   Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.  After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.    P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 
    • I am 33 and just diagnosed with celiac in July 2017. I am gluten free but still suffering from costocondritis and stomach acid issues. I am also dealing with some neurological things like pins and needles in my left shoulder blade that come and go. No deficiancies right now that we know of othwr than vitamin D which I have a prescription for. My symptoms were not bothersome until right after my first child and then everything fell apart. 
    • That is good news!  No celiac disease!   I would follow your doctor’s advice.  Consider adding in more veggies and fruit into your diet.  You can trial a gluten-free diet now that testing is over.  That might help.   Did they rule anything else out?  I would encourage you to obtain all your lab results and medical records.  It is a very good thing to maintain!  
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