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    List of things I love to do:<br />Run (marathon distance and trail running...bring on the dirt and mud!!)<br />Cook<br />Camping<br />Spend time with my son<br />Work (I am a personal trainer and love my job!)<br />Travel<br /><br />List of things I want to do:<br />Hike Machu Pichu<br />Open my own training studio<br />Cycle across Canada<br />Visit Baffin Island and buy a beautiful soapstone carving from a local artist.<br />Kayak surrounded by narwhals.
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  1. 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

  2. Thanks Fedora,

    I know that I get unpleasant side affects from eating gluten and the side affects became more apparent and seemingly worse each time I give myself a gluten challenge (I did two, one after being off about 4 1/2 months and one after being off again for about 2 months). I don't plan on going back onto gluten so am happy to be gluten free for the rest of my life regardless of what the tests actually mean. But it is kind of nice to know what the genetic results do mean to me....thanks again for your help!

  3. Hello,

    I see a recent thread on HLA typing, but thought I would post this separately so it doesn't get lost in the previous thread...hope no one minds.

    I had my testing done through my GI's office, so didn't go through Enterolabs for results...However, I am hoping some of you experts out there can help me understand the results a little better.

    What I got was a report that shows Molecular and Serology results...they are as follows:


    DRB1* 01 DQB1*05 (I think this is Allelle 1??)

    DRB1*13 DQB1*06 (I think this is Allelle 2??)

    DRB3* B3


    DR1 DQ5

    DR13 DQ6


    I think the DRB3 and DR52 are totally unrelated to the celiac genotyping...not sure why they are there, but am assuming I it is the DQB1*05,06 that I should be looking at. From what I have read they are both related to gluten intolerance....is that correct? Also, I have read that 05,06 are actually subtypes of 01, so does this mean I am a double 01 or is that unrelated? I have had positive dietary response to going gluten free, so plan on staying gluten free no matter what, but am just curious if anyone can shed more light on the results or point me in the right direction.


  4. In response to this...sounds a lot like me. How long do all of your periods last now that you are off BC? I feel like in addition to the abnormalities of their frequency, when they do come, they really only last for 2 days and then are pretty much nonexistant. They kind of trickle off for the next 3 - 5 days with nothing really there. Is that normal that they only last that long?!

    They last about 5 days...start with a a really light day, a couple of days heavier and then really light the last couple. I think it is normal, and I also think as we get closer to menopause (I am 42 and could be hitting peri-menopause) things start to change a bit anyways...

  5. 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...


  6. 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??)


  7. Hi Aleisha,

    Your doctor might want to run the Free T3 and Free T4 in addition to the T3 and T4 already done. They are different tests.

    Here's a brief explanation:

    What is the Difference Between T3 and Free T3?

    Triiodothyronine (T3) is a thyroid hormone that circulates in blood almost completely bound (]99.5%) to carrier proteins. The main transport protein is thyroxine-binding globulin (TBG). However, only the free (unbound) portion of triiodothyronine (free T3) is believed to be responsible for the biological action. Furthermore, the concentrations of the carrier proteins are altered in many clinical conditions, such as pregnancy.

    In normal thyroid function, as the concentrations of the carrier proteins changes, the total triiodothyronine level also changes, so that the free triiodothyronine concentration remains constant. (In an abnormally functioning thyroid, this is not necessarily so). Measurements of free triiodothyronine (Free T3) concentrations, therefore, correlate more reliably with your clinical status than total triiodothyronine (T3) levels.

    For example, the increase in total triiodothyronine levels associated with pregnancy, oral contraceptives and estrogen therapy result in higher total T3 levels while the free T3 concentration remains unchanged (in normal individuals)

    The principal thyroid hormone, thyroxine (T4), circulates almost entirely bound to thyroxine-binding globulin (TBG). Altered carrier protein concentrations induce changes in total T4 levels, and free T4 concentrations tend to stay within a tight range. Total T4 measurements do not always reflect thyroid status. TBG levels may vary under different physiological conditions, such as during pregnancy, oral contraceptive use, and estrogen therapy. Total T4 levels may increase above the normal range while free T4 remains normal. Alternatively, patients with a dysfunctional thyroid gland and altered TBG levels can have normal total T4 levels, masking the illness. Since abnormal T4 levels may signify either abnormal thyroid function or carrier protein variation (physiological or pathological), free T4 measurements more highly correlate with thyroid status than total T4 measurements.

  8. I didn't get my first period until I was 15 and was very irregular. No horrible cramps or anything though. When on birthcontrol I was regular, but off birthcontrol I can go sometimes 45 days, sometimes 30, then the next time 60 days inbetween. I have gone gluten free off and on for the last 9 months and notice off gluten I am much more regular.

  9. I am also in Canada and had the TTG IGA only done. It took 3 weeks, reference range being <4 negative, 4 - 10 weak positive, >10 positive. It is obvious we two Canadians had different panels run (various labs will use different panels and will have different reference ranges). You may want to follow up with your doctor or the lab and see what the length of time is expected to be for results. When you get the results, find out what the reference ranges are for each test and your results (a copy of your results is helpful as it usually indicates the reference ranges on it).

    Make sure you stay on gluten if anticipating a biopsy as next step. I was off and on and have ended up at the point where I would need to go on gluten for 3 - 6 months (minimum 4 slices of bread a day) before the gi will perform the endoscopy. I decided to forgo the "official diagnosis" and am just off gluten now.

    Good luck!

  10. Hi, I know this may sound simplistic, but if you feel better not eating gluten and have noticed such a huge improvement that is probably the best test of all. As you will read on the board here, many have had negative blood and biopsies, but feel so much better on a gluten free diet that they take it out of their diet. I know it can feel frustrating not to have the proof through the testing process, but I think the way to look at is that whether celiac or gluten intolerance, there is still much to be learned and testing doesn't always provide the answer. Be thankful you have discovered the cause of all the pain and issues you have been dealing with as it sounds like you have experienced significant improvement on the diet.

    Once going gluten free it sounds like a lot of people have a different experience when getting glutened again (often worse). It was so in my case. I think some of what it is that the body is healing and when exposed to gluten again it is hard on the system. I think a bit of it as well, for me, is that I was used to living with the symptoms for so long and they seemed kind of normal, and when I went gluten free and realized how good I felt, those other symptoms just seem magnified in comparison when I ingest gluten.

    By the way, I had a weak positive blood test and after discussion with a gi specialist, decided to forgo the endoscopy....I feel better off gluten and that is good enough for me...without the endoscopy I can't be given the formal diagnosis, but what matters is how I am feeling health wise.

    Good luck!!

  11. Hi JasonD2, Why did you get the testing done? Were you having symptoms? I went off gluten for about 2 months this summer (I was having periodic, not consistent, bouts of painful abdominal bloating, gassiness and pinned it down to gluten products) and I had to say during the time I was off it I didn't notice a huge difference with my symptoms. What I did notice is that when I went back on I really noticed a big difference...I hadn't realized how gassy I was (my son finds it amusing), changes in bathroom habits, and other things I hadn't paid much attention to.

    Maybe keep a log book right now of what you are eating gluten free and any symptoms you notice. Then try a gluten challenge for a week or two and note any symptoms...see if you notice a change.

    It is important to note that some people with Celiac have damage to their villi with no symptoms, and are at risk of further, significant damage without sticking with the diet. I guess if you don't feel any symptoms it can be hard to stick with the diet as you probably feel you aren't hurting yourself. However, you could be setting yourself up for some signficant health problems down the road. You should read the book Dangerous Grains. In their view anyone with Gluten Sensitivity needs to be just as diligent about staying gluten free as someone with Celiac.

  12. Hi CDog7, I have noticed different reactions based on the type of food and am wondering if it is to do with the amount of gluten? I am assuming some foods will have more than others, or different types of wheat have a higher amount of gluten in it...when I eat pasta I don't have stomach pains, but I typically have a horrible sleep and am all lethargic the next day. If I eat something like a bowl of shredded wheat, I get really burpy, stomach pains, etc. Perhaps durum wheat used to make pastas doesn't have the same gluten content as the wheats used in cereals and breads???

  13. There are some awesome mash ups on the internet that you can find....some of my favorites are a mashup of Alicia Keys "You don't know my name" and Aerosmith "Sweet Emotions", ACDC's "Back in Black" and Queen's "We Will Rock You" and probably one of the most famous mashups called Ray of Gob (Madonna and the Sex Pistols). Probably my all time favorite, which you can view a video of on You Tube, is Sexy Sunglasses (Cory Hart "I Wear my Sunglasses at Night" mashed with Justin Timberlake's "SexyBack").

    I also love Icky Thump by White Stripes, Hitchin a Ride by Green Day and Move Along by All American Idiots to get things movin' along!!

    Have fun!

  14. Are your doctors checking you for Hemochromotosis? It is an overload of Iron in the body. Here is a list of symptoms.

    chronic fatigue

    joint pain

    arthritis, especially of the knuckles of the first and

    second finger, and thumb

    a change in skin colour, either bronzing like a tan

    that never fades or a slate gray

    abdominal pain and distention

    menstrual irregularities and premature menopause

    loss of body hair

    loss of libido or sexual drive


    sudden weight loss

    thyroid problems

    mood swings and other personality changes such as

    severe depression or anger

    elevated liver enzyme levels, such as AST, ALT,

    GGT or alk phos, on routine blood work

    elevated triglyceride levels

    increased glucose levels (blood sugars)

    diabetes (adult onset or Type II)

    enlarged liver, cirrhosis or other liver conditions

    irregular heartbeat (arrhythmia)

    congestive heart failure or cardiomyopathy, a

    disease of the heart muscle

    The liver plays an important part in metabolizing Vitamin D, and hemochromotosis will typically affect the heart and liver as excess iron is deposited there causing issues. Your body's inability to metabolize vitamin d could explain deficiency there.

    Good luck figuring things out.

  15. What I found, and I think others have as well, is that when you go off the gluten free diet you feel so lousy with the return of symptoms , that you can't wait to go back to gluten free. There are so many great gluten free products out there, it is just a matter of sourcing the stores in your area that carry the products and figuring out which products you like. As well, I look at it as a reason to eat healthier. It gives you the opportunity to eat more whole foods (fresh cuts of meat, fresh fruit and veggies and I love rice and sweet potatoes). I know when you are dealing with all the fatigue, the thought of even starting to figure out what to cook let alone starting into cooking meals from scratch is overwhelming, but as you start to feel better try to set aside some time to experiment with your meals. Good luck!!

  16. My youngest daughter also can't retain anything and these past two years has failed nearly all of her courses in high school. Everybody claims that she is just lazy and doesn't care. I know better, but nobody believes me!

    It's hard on the kids when people think they are just being lazy. With ADHD it isn't their fault...telling them to concentrate and focus is like telling someone who needs glasses to just look harder and they'll see. I have had teachers say to me they think my son is just being lazy and I am appalled to hear that coming from the individuals that are supposed to be helping him learn. I do think that ADHD is a symptom of some other problem and it does make sense that if nutrients are being properly absorbed, the brain and it's function will be affected. I agree, it doesn't hurt to try the gluten free approach and see what happens.

    Ursa Major, I wish your daughter the best and hope she realizes she is a valuable, unique individual!!


  17. Keep an eye open for cross reactors -- I see you mention birch. Birch is cross reactive with Apple, Plum, Carrot, Fennel, Cherries, Walnut, Pear, Potato, Peach, and Wheat. That means that these foods are similar enough to birch that at varying times of the year (esp when birch pollen is high) these foods could cause a mild oral or behavioral/inattention reaction.

    I knew about the cross-reactive component to apples and most pitted fruits (plums, peaches, cherries, etc.) but did not know that potatos, carrots and wheat were also involved...that is interesting. It is funny, as a baby when he moved on to solids I could never get him to eat the fruit which most babies seem to prefer. He will eat vegetables before fruit anytime, even to this day. I will certainly check into the others you mentioned watch for as well.



  18. First day back at school and his teacher has already noticed a difference. (Mind you, this is only a couple of days in). He does have other allergies (severe allergy to nuts, carries epi-pen, as well as dust, grass, birch trees). He was breastfed until about 6 months, but would spit up constantly...must have been something I was eating...and when he came off breast milk, he certainly didn't get any worse with spitting up. It was probably once he started eating more solids that things settled down on that end.

    Anyways, I'll see how things go. He is a very picky eater, but so far seems to be eating all the new stuff I am putting in front of him with no complaints!

    Thanks again, everyone!


  19. Hi all,

    I am in the process of being formally diagnosed for celiac (one weak positive blood test, one negative blood test) and am awaiting an appointment with a gastroenterologist. My son, who is now 12, was diagnosed with ADHD 3 years ago (shows more inattentiveness than hyperactivity). He is unable to stay on task at school and is very forgetful.

    I am wondering if anyone has noticed ADHD symptoms improve on a gluten free diet. He does not show the common symptoms for celiac or gluten intolerance (ie: diarrhea, etc.) but for many years was way behind in growth charts (he is now in the 50th percentile for height, but that has only come in the last 2 years....for the first 5 years or so of his life he was at about the 10th percentile.) He is a very picky eater and lives on gluten based products (he loves his bread, pasta, cereal) and I am considering putting him on a gluten free diet for 2 - 4 weeks just to see what happens with his ADHD symptoms. My other option is to have his blood test done right away and see, but with so many false negatives (and from what I hear higher chance of false negatives in kids) I'm tempted to just trial the gluten free diet with him.

    Anyone with a similiar situation??

  20. Hi, Yes, my situation is that I got a weak positive on the transglutaminase test and my doctor repeated the same test (not sure why) and the second one came back negative. I have an appointment with her in a couple of days to find out why we don't need a 3rd blood test and why she is assuming the first one is wrong, as she seems to think the second one being negative somehow means nothing is wrong. It's frustrating and I'm thinking I might just stick with gluten-free and not worry about an official diagnosis.


  21. Thanks for the information. I did go gluten free over the summer (probably about 3 months) and it was hard to pinpoint whether I felt alot of improvement at the time (other than no episodes of burping and bloating), but what I really noticed is when I went back to eating gluten products I felt generally bloated, tired/fatigued and after meals I would feel uncomfortably full, whereas when I was gluten free I could eat a meal and when I was full it wasn't uncomfortable.

    I think I'll go back to gluten free regardless of test results.

    Thanks again!

    Mary :rolleyes: