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Gluten Connection?

Discussion in 'Women's Alopecia Areata' started by joli1229, Jul 5, 2011.

  1. joli1229

    joli1229 Guest

    It has been six weeks since I posted the original question regarding gluten and began my own gluten free life... which includes gluten free toothpaste, lotions, shampoo, conditioner, cosmetics... anything that goes into or onto my body. Prior to going gluten free, I would wake up several mornings a week literally aching all over. This has not happened once since eliminating all forms of gluten from my life. I can't help but think that gluten was somehow toxic to my body.

    I have found it very easy and feel absolutely no sense of deprivation. I do have some peach-fuzz hair filling in the very large areas of alopecia areata (over 1/3 of my hair is gone), but it remains to be seen if this is just the usual very slow, thin, fine regrowth that has occurred in previous bald areas before new ones appear. In any case, I am hopeful, feel wonderful, and am committed to continuing this diet indefinitely.

    In addition to the products recommended, I would like to add Carol's Gluten Free All Purpose Flour (http://gluten-free-flour.com/). It is by far the best gluten free flour I have used. For cookies, muffins, pancakes, even biscuits and brownies, just substitute for regular flour. Amazing!

    I'll keep you posted on any substantial hair regrowth. In the meantime, I've lost nothing and gained so much by going gluten free. Best to all...
  2. Mariaaa

    Mariaaa Guest

    :bravo: Congrats on going gluten-free for 6 weeks already! It's great to hear that you've benefitted from it.
  3. cookie

    cookie Guest

    Hi everyone,
    I have not yet read every single post in this forum but I would like to contribute to it as well.

    OK, about a year ago I wanted to start my own gluten-free-trial but I somehow never did it.
    I went to my GP and asked her to have me tested for Celiac.
    The results came back "normal" (whatever that means...).
    I have seen 4 other doctors in the same practice and had them retest me for Celiac again and again.
    Same result. This makes 3 negative tests. The doctors told me that I did not have Celiac and I had to accept it.
    For all the wrong reasons I did accept thyat Celiac may not be the answer.

    In between I have learnt that the lab where they draw the blood (I always have to travel to a facility called Appleby Centre in East London whenever my GP wants to have something tested) interprets the results and does not pass on the exact figures to my GP - WTF?! - I thought.
    I was basically lucky that on one test, where they ordered the full blood count test, the platelets came back as low.
    I had a nervous breakdown in the examine room because of my hair and he said, OK, we retest and I will refer you to Haematology if the platelets come back as low.
    I will spare you the exact details today (will write all this incredible stuff up on a different occasion), but fast forward to Haematology... they did all the blood test, some weird ones, some I knew... and when I came back they HAD the exact figures.

    The doctor told me that my ferritin was 12. I shrieked and then was speechless bc of utter disbelief. She told me that many labs interpret ferritin levels wrong because the level that was once seen to be within range was already too low to begin with. She said it should be no more than 260, but my ferritin should not be below 70. In order to make me understand how low my ferritin is compared to the minimum of 70, she said that if it was 8 or below she would have admitted me and I would have been given iron (injections if I remember it correctly).

    She said there are 3 main reasons for low ferritin in women:
    1. Blood loss / heavy periods
    2. Diet
    3. Malabsorption

    Then I saw my chance. I asked her, "Do you think it could be Celiac?" to which she replied "That's what I was going to say!"

    I told her that I have very light periods now but that heavy periods were the reason why I started birth control pills when I was 13 or 14. I told her that I have had no trouble with my period since then.
    I told her that sometimes I find proper amounts of blood in my stool but that the last episode was more than 6 months ago.
    I told her that I am vegetarian but that I eat 3 eggs and 100g of almonds a day to make up for the meat I don't eat. Plus: Lots of leafy vegetables, green stuff... plenty of vitamins and proteins...
    Then she said, "I think it is likely that it is malabsorption" and "you need a biopsy - but we need a stool sample first."

    OK, this may be a little much information but I post it anyway: I took a sample of my stool and noticed that it was not only stool but tomato peel, carrot pieces and almond pieces were in there. I passed back the sample, eventually got to see my GP who referred me to a GI...
    I was really scared. That scared that I did not want to have the biopsy done. My husband eventually agreed to have an endoscopy done as well to prove that it's not scary. So he went to the GP, made up symptoms like undigested food and blood in stool, bloating and gas (he does not have any of them... but I do!). His blood tests came back negative but he convinced the GP to refer him to a GI anyway.

    OK... I spare you the endoscopy bits but I can tell you that you will never again feel shame talking about ingrown nails, bloating, rashes...
    My results were commented on with "Congratulations, you now have the diagnosis you always wanted - it is Celiac!" I was speechless and relieved. Of course I started crying.
    My husband's results were interesting. He was told that he does have Celiac and that his vili are pretty badly damaged and that they might now grow back. We were both shocked!!!
    Especially as I was the one with all the symptoms.
    My husband is a lot worse off because apparently he does not digest anything properly.

    We are on a gluten-free diet and guess what: Within 6 weeks I have grown baby hairs all over (apart from 2 mini spots above my ears) my head. My pubic hair is growing back (I could have done without), same with the hair under my armpits (hair was almost completely gone there, I only shaved once a month to kill off the few stragglers), my eyebrows look fuller as well.
    I feel no longer dizzy (I eat the same stuff but replaced pasta and bread with the gluten-free alternatives) because the ferritin us going up now - because I DO get enough protein and iron out of my food!!!
    Oh, I no longer eat out. I do not trust the restaurants. But this saves money which I reinvest into gluten-free food. :)
    As for my husband... who would have thought that his "old man pains" would go away completely??? A man aged 40 should notice the difference in being 20 or... 40 - but never would he have expected that those random "old man pains" were caused by Celiac, especially as he did not any of the other symptoms, though I still wonder why he did not have bowel probs especially as the damage to his vili was/is really, really bad...
    He'll be back with a GI for a check-up soon to see if the vili regrow but I won't have another check before the end of the year.

    All I can tell you is that I am sooo done with regular GPs. The 2 dozen GPs I have consulted were all useless.

    There's no real moral to this story but... 2 people who were either told "you do not have Celiac once and for all you have to accept it" or had no symptoms both turned out to be Celiacs!!!

    I strongly encourage ANYONE to ask their GP for the exact figures when it comes to "everything is within range".
    My ferritin, back then probably even lower due to the immense amounts of blood in my stool, was 68 points away from the minimum it should be but only 4 points away from hospital admission and iron injections. The ferritin should have tipped them off! They always told me that all results were within range (misinterpreted by the Appleby Centre in East London) when they were clearly not!!! I thought my ferritin was within range (100 or so...?!) and I even advised one member of this forum with a ferritin count twice as high as mine to up her iron intake and to get a second opinion about it... I had little idea that I was a lot closer to being finished off by my body.
    Still, twice my count is still too low. Even six times my count is just about the minimum...

    The reason I am posting this is that way too often Celiac disease or even a gluten intolerance is ruled out without tests being performed. The blood tests are unreliable (I read that they are between 55 and 95% reliable - but this depends on the person interpreting the results) as they will only detect an autoimmune response if you actually eat lots of foods containing gluten (I rarely ate bread and had pasta only once or twice a week).
    This is not the cure for everyone but it may be it for 10% of all Alopecians. Gluten wrecked my hair, caused me rashes ("it's just eczema", they said) that actually were gluten deposits under my skin, ruined my dental enamel and made me depressed.
    So... this WAS the reason for one girl who lost 80% of her hair in no time, who lost body hair and eyebrows, but luckily I kept my lashes!
    Of course only time will tell but knowing that the bumps on my scalp were gluten deposits and that they are GONE and experiencing regrowth I feel good about questioning the idiot doctors. Still, it is a shock that my husband has CD, too, and that he is worse off. :(
  4. cookie

    cookie Guest

    I am sorry, I forgot something.
    This may be gross for some but it gave me the "Ha, I knew it!" moment and may have prevented me from future colon cancer: If you suspect that you may have Celiac, please have a look at your stool - if you see food remains in there you are on to something. Not many conditions prevent your body from digesting food properly.
    I am not intending to scare anyone and I do not hold THE answer. Just have a look as many web sites that centre around Celiac Disease suggest.

    Good luck!
  5. kat1979

    kat1979 Guest

    Thank you Cookie for your detailed account of your experience.

    I had my first handful of long, healthy, silky hair fall out in July 2010, lost most of it by November 2010 and then shaved my head. The previous two years I had the most uncomfortable, unpredictable rash that would randomly flare up and caused me so much angst. I cannot believe it took me so damned long to piece together that when I drink beer and eats lots of gluten-laiden foods, my skin issues would increase.

    I have been attempting to live a gluten-free or dramatically-decreased-gluten life for the last 3 months. This in itself is quite challenging, I am quite the 'foodie'. My skin is much clearer than it used it was in the past 3 years. My regrowth is consistent and a full-thickness on my head, although the texture is quite different now.

    It is deflating that modern medecine and science knows little to nothing about this area of health/dermatology/immunology. We really have to take matters into our own hands!

    All the best to you in your journey!

  6. neencali

    neencali Guest

    This makes sense. I tried to go GF in the summer but didn't think it was helping. Starting today I am going on a 6 mo trial of GF and dairy free.
    I read that if you have hashimotos thryoiditis that the body is attacking the thryoid and that somehow gluten looks like thyroid to the immune system. So for my thryoid I need to try this. I am hoping against all odds that my hair will stop falling out when I do this.

    I did this over the summer and all my original spots came back. The shed didn't stop though so I thought it wasn't the gluten. I have been back on gluten for 2 mos and have had tons of new spots and tons and tons of shed.
    My natural dr told me last week I have leaky gut and am not absorbing my thyroid meds or supplements. I am going to try this and hope it works.
    I will post to this thread every so often as to my results.

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