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  1. Hi all!! It's been a long time since I've been here! My life has gotten crazy! I had my second baby almost 2 months ago and having two kids is quite the challenge for me! However, I am doing great with being 100% gluten free! YEA!

    I came back to this site to ask for some help from anyone willing! I am creating a small book of sorts as a personal project (though hoping it might someday get to be published). I would love to include some personal stories of people of different ages (or loved ones of those people) telling of your diagnosis and reaction to the new gluten-free diet you were about to start. Please only share with me if you don't mind me quoting you in my "book." I will only use the stories and quotes from this specific thread.

    Thanks a ton!!


    My self diagnosis started with my mom...She had a range of symptoms that bothered her(stomach cramps, D, headaches/migraines), and one day my dad was in the grocery store and overheard two ladies talking about celiac disease and the symptoms...He asked them what they were talking about, because his wife, my mom, had the same symptoms...After that, mom cleaned up her diet, and we were all on the diet after that, since she did the cooking...I was a teenager at the time, and didn't have any idea of what was going on, since I was more tuned into my friends instead of my family...When I moved out, I didn't know anything about celiac except it was something my mom had, so I ate a lot of pizza, pasta, breads, and I had horrendous rashy acne(DH I now realize) that I couldn't get rid of, and medications(acutane, tetracycline, hydrocortisones)only helped a bit, but not much...I tried everything I could think of to get rid of that acne, and nothing worked...I also had awful stomach cramps and constipation followed by D a lot of the time, but thought it was an allergy to msg...one day I was in my car, listening to a radio talk show, and they talked about a website for celiac,this one, actually...I passed the info on to my mom so she could look it up if she was interested...Well, lo and behold, a month later she did, and she got curious about other symptoms and saw a picture of someone with terrible acne(DH) and she said it was like looking at me...She phoned me up that day, and told me she thought I had celiac disease, and to try the diet...I was willing to try anything by this point...Ironically, I'd just had a bowl of campbells cream of mushroom soup and a bowl of mr noodles for lunch and was having my usual nap after lunch...She says my acne started clearing up in 3 days on the gluten free diet, and I was clear skinned after a month...It was amazing, after 5 years of prescriptions, dermatologists, sugar free diets, caffeine free diets, trying anything I could think of to clear up the acne...And my symptoms were different at the time, although I've since heard of other people with celiac having the same symptoms, so I don't feel so bad now that I know I'm not alone...I have a constant battle with constipation, itchy skin, extreme tiredness, anemia, and now I know I can add the skin tingling and numbness(hands, arms, face) to the list, rls to the list, and anxiety to the list...I only found this forum tonight, and it's been eye opening for me...I shall be back tomorrow to look further...And I should mention that it's been difficult to stay gluten free, and I frequently cheat because I miss certain foods too much...I used to hate the celiac, but it's been much easier now that I've found a grocery store that carries a lot of different foods and pasta noodles that are gluten free...That has been a big help...I find it a pain when I'm eating out, and my mom wasn't very supportive in the beginning, because she thinks she can tolerate more food with gluten than I will allow myself(and then she wonders why she still has some symptoms after eating gluten rich foods like pastas and breads/donuts) but she's much better at supporting me now, since she knows I don't choose to be this picky with my food, and I'll suffer if I'm not this picky about my food...Thanks for asking for our stories, it's been very good to share it finally...

  2. I feel for you. Have you checked all your cosmetics, soaps, detergents, lotions etc.? I was using this Oil of Olay body wash only to find out it contained gluten. It was making me worse. I wish you luck. Also check your medications to make sure they are gluten free.

    I never knew that soaps could contain gluten in them...Myself, I swear by Olay moisturinse, it's a lotion that you spread on your skin, then rinse off, and it stopped the itching in my arms and legs the first time I used it...I don't know if it has any gluten in it, but it sure works for me, I won't be without it now...

  3. I'm having skin stuff that seems like it could be DH (was quasi-diagnosed with Celiac, see Enterolab results below).

    I've this stuff on-going since about 12, with a couple of especially bad bouts. When I was younger, it was around the thighs from top to knee, intensely itchy, on both sides.

    Now it is not symmetric, it is only on my right thigh. My scalp is also very itchy, and (strangely) the pad of my index finger is so itchy I'm finding myself biting at it like a dog to scratch. heh.

    I am also have some immune stuff going on my corneas, and this is all concurrent with a relapse of GI symptoms from when I went gluten-free last November. I haven't had any gluten purposefully, but eat out a lot, and usually don't give them special prep instructions.

    I am planning on going on a no-processed-foods diet starting immediately. However, I also need to decide whether to bother going to doc for this skin stuff. I have not been diagnosed *officially* with celiac; I waver about whether this is a blessing or a curse. No pre-existing condition on one hand, no docs who know what to do with me, no ability to say without doubt that I have it, on the other.

    If they biopsy and it's positive for DH, I fear they will ask me to go through another endoscopy. The last time the doc didn't go down past the duodenum, and never took biopsies of the small bowel, so it was a nice waste of time and money for me. On the other hand, if that's what it is, I would love some kind of TREATMENT cause I'm miserable.

    So. I'm not really comfortable posting a picture here....but I was hoping that someone might be willing to let me email them to you and take a look and at least you can tell me, Yes, that could be DH, or No, that totally doesn't look like DH.


    It was like looking at myself 8 years ago...My mom has celiac, she figured it out herself when she was 35yrs old(I was about 14 yrs old at the time), and my own skin cleared right up while I lived at home...When I moved out, not knowing that I have celiac disease, my face broke out very badly from the gluten rich diet of pizzas, hamburgers, macaroni and cheese, etc...5 years later and many doctors later, including a dermatologist, and many, many prescriptions for tetracycline(an antibiotic to clear up acne), acutane, hydrocortisone creams, sugar free diets, caffiene free diets, and anything else I could think of, we finally figured out it is celiac, and my face cleared right up when I stopped eating things with flour in them...I had the rashy acne on my face, neck, shoulders, down my back, intensely itchy skin on my face and shoulders, and if my diet was really bad, I'd get a patch of skin on my body(an arm, a leg, my scalp, it was always a different spot each time) that would hurt intensely if touched...Just try wearing clothes when it hurts to touch your own skin...Most of that has all cleared up, especially the itchy part...Anyways, what I'm trying to say is, try the celiac diet and see if it clears things up...It may, it may not, everyone is different...I've also noticed that zinc cream, the same stuff you put on a baby's bottom, is very good for my skin...It has certain medical properties in it that really helps with skin rashes and mild acne...I take a cheap face cloth in the shower(it has to have texture, not be soft and fluffy), and give my face, neck, and shoulders a gentle rub(this is the best exfoliation out there, never mind all the commercials on tv) every morning in the shower, rinse, and rub on the zinc right in the shower(it's a wonderful moisturizer if you put it on when your face is wet...Then when you towel dry after your shower, you dry off your face, which removes the greasiness of the zinc, and you're good to put on your make up...Then wash off your make up at the end of the day(again, a wet washcloth is all I use, and a mild handcream to take of mascara if I wear any), and apply zinc at bedtime...Sure, you'll glow in the dark and smell baby fresh, but you'll have lovely skin...But try the celiac diet and see if your skin clears up first...None of these beauty tips will work if you haven't found the cause of the acne...Oh, and I've also found that Olay moisturinse in the shower is wonderful for itchy skin, too, on your arms and legs, but not for your face...Hope all this helps and hope I haven't overwhelmed you...Good Luck!

  4. I'm one of those Celiacs who's overweight and constipated. Although, when I do go, it's very loose. The Gastroenterologist says to take laxatives, but I'm very leery of anything that may harm my intestines more than they already are.

    Any suggestions on what to eat, take, or do to get going again? Also, any ideas why I get like this? I feel like this happens when I try to eat cereals like rice bran, or buckwheat.



    Hi, I also have a problem with constipation CONTANTLY, and have found a few things that work well. Try milk of magnesium at bedtime(if you can stand the taste). Also cook up some dried prunes in a bit of water until they soften up - 4-6 should do(eating them dried doesn't work, you have to soften them up with a bit of cooking), or I've heard that peaches are very high in fibre(fresh or canned). My favourite, though, is a small bowl of Tostidos chips(made with cord, oil and salt), in the evening. Hope this helps...