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Hair Loss?

SandyShoes

By SandyShoes
in Coping with Celiac Disease

Recommended Posts

Mag-d Newbie
Mag-d
Posted

hello there,

just out of curiosity, for those of you who experienced hair loss due to being a celiac... how long did it take for it to stop falling out & for regrowth to begin?

thanks :)

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Tigercat17 Enthusiast
Tigercat17
Posted

hello there,

just out of curiosity, for those of you who experienced hair loss due to being a celiac... how long did it take for it to stop falling out & for regrowth to begin?

thanks :)

I think mine took about 4-6 months, but I think everyones different. :)

SoyBoy Rookie
SoyBoy
Posted

Hi everyone.... I really need some help here! I am getting so frustrated with this disease.. I feel like I am aging so fast, I feel that my skin, eyes and hair have taken a huge hit and its making me so so depressed. I spend so much money on healthy foods that are gluten free and vitamin supplements and nothing is working... I cant stand looking into the mirror any more. I know I have to give it time... I have only been gluten free for 4 months... How long could this take.... Does it get better? Could there be a chance I wont get better? My hair is so freakin thin I dont even look the same as I did 1 year ago......

Can you list your supplements (including quantities / dosages)? Maybe someone here can help.

K8ling Enthusiast
K8ling
Posted

We found out that I had Celiac BECAUSE I was losing hair from malabsorption. Hair is a big indicator (I have been told). The good news is, my hair grew back when I started getting the stuff I needed :)

smc Rookie
smc
Posted

Wow I hope all the hair loss gets better as you heal! You may want to check your thyroid out. Abnormal thyroid can cause hair loss too and celiac and thyroid conditions can go hand in hand.

cait k Newbie
cait k
Posted

I have lost a ton of hair over the past few years and my doctors told me the same sorts of things...everyone loses hair as they get older, your hair looks fine, and my favorite--you certainly don't look malnourished! All of my tests have come back normal (except for once my thyroid was slightly low but then it recovered). They always told me I was fine. Then in my most recent bout of tests, a month ago, I had low iron levels. So then I asked to look at all of my test results and pretty much everything they tested was at the low end of normal....and the normal range for these things is huge! So I'm wondering is normal for me the same as normal for a 60 year-old man? If anyone knows how these normal ranges were developed I would like to know.

Kallie

Same. and i am only 23! before i was officially diagnosed i lost SO much hair and so much weight that i looked sickly. I have been completely gluten-free for a year now and regained the weight and hair started growing back in..but now that im super stressed out again with law school finals everything is going to hell again. My hair is once again falling out, i cant see the board in class (eyes apparently going), i have horrible skin (acne and weird dermatitis on arms), and also a horribly pale and deathly complexion. In addition to all the usual digestive symptoms. I am taking vitamins too and i eat healthy. This probably does not help you but take comfort in knowing that you are not alone. I am depressed over it as well. I wish there was a simple fix. I have heard that the best thing is to go get a blood workup to see what we are deficient in and try and supplement those areas. I am planning on doing that once school ends.

ravenwoodglass Mentor
ravenwoodglass
Posted

Same. and i am only 23! before i was officially diagnosed i lost SO much hair and so much weight that i looked sickly. I have been completely gluten-free for a year now and regained the weight and hair started growing back in..but now that im super stressed out again with law school finals everything is going to hell again. My hair is once again falling out, i cant see the board in class (eyes apparently going), i have horrible skin (acne and weird dermatitis on arms), and also a horribly pale and deathly complexion. In addition to all the usual digestive symptoms. I am taking vitamins too and i eat healthy. This probably does not help you but take comfort in knowing that you are not alone. I am depressed over it as well. I wish there was a simple fix. I have heard that the best thing is to go get a blood workup to see what we are deficient in and try and supplement those areas. I am planning on doing that once school ends.

I wouldn't wait to long before getting that blood work done. I know you must be really stressed out but you will do better on those finals if your health isn't compromised. Is there anything you are eating that you weren't before you got so busy? Like are you eating at the school cafe more often, grabbing coffee at a coffee shop, added any supplements that you haven't had the time to confirm are gluten-free? In another post I seem to remember you saying you had been doing pretty well before you came under the stress, is there anything at all that you can pinpoint that has changed? One other thing that may not apply to you is that for me soy also causes hair loss and while the GI symptoms I get are different from what I get from gluten soy still leads to a lot of problems for me. If you consume soy you may want to try dropping it for a bit to see if it helps.

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  • 6 months later...
JuliaSam Newbie
JuliaSam
Posted

A few months ago I started getting an extremely itchy scalp and people said it was probably dirty, but when I would wash it it would still itch and it itched bad! Then, my hair started to fall out more in bigger amounts. I was very tired as well so I went to the doctor etc many times before being diagnosed with celiac disease. Most doctors don't know about celiac/don't consider it. I've been off gluten for about a month, but I did eat it once by accident (maybe more too). Does an itchy scalp and hair fallout mean DH? Sorry if thats a really stupid question. I haven't really noticed blisters or anything. And I'm only 17, how long do you think it will take for my hair to stop falling out? It has thinned out a lot. :[ It's depressing. Also, should I try to find gluten free hair products and makeup? I don't know how important this is. Thanks =]

rosetapper23 Explorer
rosetapper23
Posted

I would venture to guess that you're probably deficient in certain nutrients (e.g., zinc, B vitamins, and/or silicon), and that's what is making your scalp itch and your hair to fall out. For me, those symptoms were relieved by taking zinc. If you decide to take zinc, it should be chelated zinc, and you'll need to take copper with it. Perhaps your doctor would be willing to check your nutrient levels (??). Some of us here have been helped by a product called BioSil, which contains silicon.

As for shampoos and personal care products, I am a strong believer that they need to be gluten free. Two very good brands of shampoo are Dessert Essence Organics and EO, which are both formulated with essential oils.

AVR1962 Collaborator
AVR1962
Posted

Body is more than likely suffering form lack of nutrients. I too had hair loss. I started taking an extra zinc along with my multi and BioSil drops and my hair stopped falling out. I know someone that used Primrose tabs and that helped her.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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