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gfpaperdoll

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  1. Just thought that I would chime in that I have recently discovered that I am a Saami. I had my mtDNA run. I am U5b1b = the old line of Sami. Everything I read about these people amazes me & I can see my traits & tell that I came from these people. I have a thread on the Paleo forum about Sami.

    Not only can I not eat gluten I also cannot eat grains, no dairy & no beef, among a few other things. The Sami used to eat Reindeer milk & cheese. but not anymore because of the radiation from the Chernobyl (sp?) accident.

    The people used to be called Lapps from Lappland now considered derogatory but if you want to look them up in an old encyclopedia that is where the informaion is.

    BTW, I am not considered celiac by the standard of the day in the U.S.. I have two DQ1 genes. But I am beyond sensitive to gluten & other grains.


  2. Obviously the mother has a gluten problem. IBS & UTIs are huge flags not counting that she knows she has at least one celiac gene. Plus add in fatigue (laziness) & obvious depression... plus having a child diagnosed celiac...

    Deb if you can manage it you could go for more of an intervention to get them all off of gluten, dairy & soy. You might mention to the mom that she is at high risk of cancer & other auto immune illnesses. If the mom had testing & was negative that means nothing. The dietary trial is the real diagnosis.


  3. Oh I am so sorry that you are not better yet. Dealing with allergies has been a lifelong hobby of mine. It is always a challenge. & yep, the way they change can drive you crazy. My allergies did get much much better when I went gluten-free.

    If you are getting cross contamination or just getting glutened from something, we can help you better identify it, if you can give up some idea of your living arrangements & exactly what you are eating & the who & the where it is being cooked.

    the tiny little details of the diet are difficult to master. It takes about 3 months to get the idea, another 3 months to correct those mistakes & at about the end of the first year you should be getting the hang of it and feeling much better. You slid into year two getting better by the day!!!


  4. Geoff, what is a typical days meals like for you?

    Are you taking B12 & vitamin D? Did you get all your vitamin & mineral levels checked?

    Are you taking any medications that are not gluten-free?

    Did you replace all your gluten foods with the same versions of gluten-free foods?

    Do you live in a gluten-free household?

    Do you work in an industry that you are exposed to gluten? That is if you work...

    Did you also give up dairy, soy & oats?


  5. What processed foods is she eating?

    Anything with "Natural Flavor"? A lot of companies are now hiding MSG, barley, soy etc, in Natural Flavoring.

    The children that I know that are gluten-free have a huge emotional reaction to gluten. Because of my experiences I would tend to say that she is eating something on a regular basis that is making her sick.

    I think the easiest thing to do is to just pare back to all whole foods & eliminate the processed stuff. When she is all sweet & her normal self, then add one processed food in at a time & allow a few days to a week before adding in another processed food.

    I would also recommend that you bake your own cookies, & desserts & not use soy or dairy in cooking. You can cook with coconut milk & it is excellent. & I love coconut oil also.

    Other thoughts, have you checked her shampoo and toothpaste? Any pet food in the house? - most contain gluten. Are you keeping wipes in your purse for her to wash her hands off when in public places? Is she getting sick from going in places where they are cooking with wheat flour? Are they using any play doh, pasta, paper-mache, finger paints etc at the pre school?

    To comment on your question about dairy, well I am not a good one to advise you, because I think dairy (casein) is very bad for everyone. No human needs dairy for healthy bones. I think that dairy should be reserved for the occasional treat, if the child can tolerate it with no reactions. I think that for everyday cooking that coconut milk is much better & much healthier. I have had no problems just substituting cup for cup of coconut milk for dairy milk. & really you get used to not eating cheese. I will say that the dairy habit is a lot harder to give up than gluten. Most of us really do not have such a hard time giving up gluten, but dairy is very very addictive & people have a hard time cutting it out of their diet. Warning is that if you have it once the opiate effect kicks in & you want it again. My reactions to dairy are sinus infections, headaches, ear infections, congestion etc. She could have some of that going on & it manifests in bad behaviour because she feels so crummy.

    IMO the dairy that they put in manufactured iproducts 10 times worse than the dairy that you purchase, because it is so condensed & processed.


  6. You are probably getting cross contaminated, are you still cooking for other whith wheat flour. Still cutting your apples on the same wooden cutting board that you used for wheat bread?

    check out the cross contamination threads. & be careful about the gluten free goodies that you are eating, especially the ones that are manufactured in places where they have wheat etc.


  7. Please be careful with the child in family B, that has the double DQ1, that child should be gluten-free. The child may never test positive for gluten but should be gluten-free. Double DQ1, IMO, is not very good because the person will get neurological & other health issues before any gut problems show up, if ever.

    My whole family is double DQ1 & has had problems for generations...

    not saying that the other people should also be gluten-free, but some people wrongly think that double DQ1 is not a problem...


  8. Really at first you should cut out all dairy & all soy. So no wheat free soy (soy) sauce!

    Also, do you live alone? Are there people there cooking with flour or cake mixes? Are you cooking with wheat products? Do you work in an environment that has food preparation?

    Do you have pets? Did you change your shampoo & lipstick to gluten-free?

    Did you go to all whole foods & not eat the gluten-free grain processed foods?

    IMO, if you eat those grains I think that they are somewhat cross contaminated & you could be getting enough gluten to prevent healing. I cannot eat most of them...

    Are you taking B12 & D? Did you get your vitamin & mineral levels checked?

    The diet is very hard, we know that you were very diligent, but I tell all my friends that it takes about 3 months to get it mostly right & then the rest of that year to make mistakes. I think that major healing really begins in the second year... I could not believe it but I even saw improvement at 3 years. I swear I just keep feeling better & better every year. I am gluten-free 4 1/2 years now.


  9. SBJ :D I live in a lower income neighborhood. The birthday parties around here are over the top, & that is for the kids. There will be a band, then a DJ when the band goes home, tons of food, balloon arches, rented play equipment for the kids, party bags, clowns & enough people & cars to cause congestion the whole length of the street, cake & other desserts - bought at the bakery. Alcohol drinks for the adults. Then there will be the illegal fireworks about midnight. The parties last until at least 2:00a.m. The neighbors behind me do the same thing, so I have to put up with quite a few of these a year. My rough estimate of these parties is that they spend about $800.00 on each one, at least. They have all the matching plates & accesories, & put themed tablecloths on at least 3 folding tables that they set up outside. I can tell when a party is in the works, they start the outdoor prep about 2 days in advance. Because our poor little neighborhood does not have a house 1 that will hold a crowd of people.

    That is not to mention the illegal fireworks every New Years, & 4th of July at least. These people will spend a minimum of $300.00 on fireworks, I do not get it myself. But I see how people spend their money.

    I choose not to afford cable, but I think that I am the only one on the street that does not have cable. These are all blue collar workers & they drive huge fancy pick up trucks, have cable TV, internet, & cell phones....

    lets see if I can get back to topic... well it is nice to read all the posts but really I was thinking today, why do people really care about Enterolab so much? & how do some people have so much time to post on here. Do they have a life? I wonder if 10 years from now, that they will think that it is so important to cruise all the posts on here & warn people against some imagined mis-treatment from Enterolab. But I bet that Enterolab loves the controversy, it keeps their name out there. Like the people in the public eye, they know, there really is no such thing as bad publicity.

    I also know some people that post on here incognito that are in the celiac community & think that they know everything. These particular people have an over inflated self righteousness just because they have been around a long time that they know everything & what they say is the only way. They have no idea that they are not so well thought of in real life...

    I did not read the link about Enterolab that mentioned 4 employees & $170,000.00. So I was not clear if that was the salary of each of the 4 employees or if they were talking about the P&L for Enterolab. But I doubt that their net income was $170,000.00, because in the business world $170,000.00 is not much. I think that Enterolab is doing a much larger business than that. I was counting up this afternoon & I think that I alone, have referred over 30 people to them. Now I am referring all my mtDNA matches to them also. & one of my friends that tested there, gave the results to her doctor & now he tests all his patients thru enterolab. So it is not from this board that they are getting referrals, it is from each person testing thru them & then getting friends & family tested there also. Because it is so easy to do with the added benefit that it does not go on your medical records. It really does not matter what anyone on here says about Enterolab & they know that.

    My neighbor that I just got to go gluten free along with her 2 year old, is doing very well & healing every day - she is never going back to gluten, nor does she have the money to test thru Enterolab. Her medical copay is $45.00 per visit for her and then another $45.00 for the baby, they have no extra money, they have been sick for two years, with ER visits & numerous doctor visits. Just being gluten-free for a month now & they have had no doctor visits. they also do not have the money to be tested by their doctor. So she will not have to read the controversy about Enterolab becasue that is not an option for her.

    I would also like to point out that most people that are gluten-free do not post to any boards. I know a lot of people that do not post to the internet, which I think is amazing. My neighbors behind me have been gluten-free for 10 years, they are in their 80's & they are not on the internet either.


  10. Abbreviations used on this board:

    G and F = gluten free, but I think the board changes all the ( G F ) posts to the spelled out words

    CC = Cross Contamination

    CF = casein Free

    DF = dairy free

    SF = soy free

    DH = dermatitis hepaformis

    HS = Hidradenitis Suppurativa

    HHC = Hemochromatosis

    dd = darling daughter

    ds = darling son

    dil = daughter in law

    mil = mother in law

    IMO = in my opinion

    IMHO = in my humble opinion - not many of us on this board use this one !! :P


  11. hi 2020, I think a gluten-free trial is a good idea. A friend of mine that I diagnosed, had a cough when she ate & at night. Which I was not aware of when I suggested she had a gluten problem. She had a few other symptoms also... When she quit eating wheat, the cough went away immediately. Her husband was thrilled for her.

    I am not sure but the cough might be more of an allergic reaction. Though it really does not matter, because the treatment is the same, do not eat gluten. You can be allergic & have gluten intolerance or celiac. I was diganosed as allergic to oats & barley 35 years ago. I have double DQ1 so I am diagnosed as gluten intolerant also.

    For allergies, whenever you have the lips swell, mouth burning, itchy throat, or coughing, those type of things, you want to pay particular attention to those allergies because they can become life threatening at any time.


  12. Well the good thing about celiac is that once you are on the diet your other health issues should improve or go away entirely. It is shocking at first, but we do eat really well, with a wide varied healthy diet. Your diet can be not so healthy if you like & still be gluten free - lots of snickers, potato chips, fritos, ice cream, sodas, gluten free cookies...

    the worst thing for most people is breaking the fast food habit. We really can come home from work, classes, etc & have a meal on the table in 30 minutes or less. It just takes getting used to cooking & doing prep work & keeping foods in the freezer & refrig.

    Once you are gluten free (& it takes awhile, it is hard to learn what you can & cannot eat, & even that changes as companies change their ingredients), you will feel so energetic & healthy that you will not want to go back to the old way of eating. You should not pick up any other autoimmune issues once you are gluten free. Especially if you eat a healthy diet, & limit the gluten free grains to occasional treats.

    It takes about 3 weeks to get over the addictive effects of wheat ( the grain most common of the gluten grains which are wheat, rye, barley, & oats, well you are advised to not eat oats, some people do, but certainly at first you should not eat any oats, or soy. A lot of us have a problem with soy).

    You will probably not have food cravings either after you are gluten free. You should be able to have a piece of delicious gluten free cake & enjoy it without "having" to eat three or four pieces. People think that they are just hungry or that they really like cake, but really the gluten in the wheat has an opiate effect on your brain & makes you want to eat more. The gluten free grains do not do that to you.

    So just take one day at a time, be grateful you do not have to take any medications for celiac & enjoy your new journey into good wholesome food.


  13. considering the huge database of information that he has accumulated over the years, I doubt very seriously if the government will let him publish his statistics & information. If you think everyone has free speech think again. Just like this board that has moderators, to filter out undesirable posts, the people that review these reports have a much larger filter. He would not be the first person under censorship scruntiny, nor the last.

    Talk about problems, ever stop to think what would happen if 75% of this country stopped eating gluten grains? There would be problems with the food supply, the medical industry, farm subsidies, and all the problems that would happen if 75% of the population lived an extra 20 years, housing problems, social security problems. In addition there would be problems in the job market because 75% of the workforce would be healthy & would not retire.

    In addition to that if it became "official" that wheat was a major problem for most people, then we could not send all that wheat over to third world countries to feed the poor & save them from starvation.

    I do not see any other doctors reporting anything celiac related for peer review. If so, I have not read anything about it, nor am I likely to. Maybe another country, but not in the U.S., dare I say never, or at least not anytime soon?

    Is it just me, or did anyone else notice how General Mills took that big GLuten Free statement off the front of their package?


  14. re peer review, anyone that has not read "Good Calories Bad Calories" by Gary Taubes, should read that book, it is about the history of "peer review" in this country & where it has gotten us.

    I thank God that we still have people like Dr. Fine that can stand on their own two feet & think for themselves without succumbing to pressures to conform... This country was founded with people like Dr Fine. Those same founding fathers who I am sure would start a rebellion if they had to deal wtih the medical bureaucracy, governmental red tape, insurance companies, FEMA, (oh wait I have listed that twice, FEMA is short for governmental red tape) and other foolishness that we have to put up with today.

    re DNA you can email several companies, we use Family Tree DNA. They will mail you a kit. Then someone, male, from your family submits their DNA. http://www.familytreedna.com/description.html here is a link to family tree DNA

    oh Fiddle Faddle, I have been meaning to PM you, I know someone on this board & you posted word for word what I had already told her on the phone. Then what I did not say, you did, but I had thought it!!!! I saw her recently & she asked me if I had read your post. :)

    We will have to compare & see which DQ1 genes we have! I wonder if we have the same ones?

    Happy Thanksgiving Everyone


  15. Nutrifoodie, the lab that you choose should be one that test for all the genes associated with celiac & gluten intolerance. Some labs only test for the "celiac" genes DQ2 & DQ8.

    re your dad being adopted. Are you aware that he can put his DNA in a database & probably find people that are related to him? Right down to what his biological name is. We used family tree DNA & found an adopted relative of ours. He was left somewhere as a baby 62 years ago. we also found whom we believe to be the brother of our relative that we cannot find from about 1807, they cannot find their relative for the same time period & all our DNA matched theirs, so it seems that the missing relative is the father to the two boys & our relative in common. very interesting...

    Good luck with your searches.


  16. Hi Jason, run down to the store or Walgreens & get yourself a bottle of Nature Made B12, 1,000mcg & start taking one after lunch & dinner. I am not saying this is the best B12 to take, but it is handy & cheap & will do for the time being. No one that is depressed can think right to be checking out vitamins. You need some hand holding! ;) then find some Carlson's vitamin D, 2,000mcg & take at least one a day of those - or maybe two. I order mine from Vitacost, $7.00 a bottle & they deliver in about 3 days.

    Then yes, get some professional guidance. & some blood work done on those vitamins & mineral levels.

    Quit mooning over some old girlfriend & get a new one. If you are a nice young man there are a lot of women out there looking for you. Have you signed up on the single gluten-free dating site? I think there is one somewhere. Quit feeling bad about being gluten-free & heck use it to find a girl. Talk to all the women in the grocery store - all of them, some of us old ladies have single daughters & nieces...Going to the doctor? ask them if they have any young people your age who are gluten-free. Okay you did not ask but here are my ideas for finding a nice young woman:

    go to church

    take a class

    take a dance class

    join a hiking group

    prowl the grocery store, get to know the checkers

    find a local support group

    volunteer - anywhere -

    go to the library - get to know the librarians

    outlet malls

    get to know your neighbors

    hang out at the local museums, attractions, take a book, a sketch pad etc.

    borrow someone's dog & take it for a walk - okay people really do this...

    Get your hair cut at a place that also does women's hair & get to know everyone

    take a photography class

    Take any class that you think girls would like - not going to find many in shop tools 101.

    If all that fails, find the local scrapbook store & hang out there & ask some single girl to help you learn how to scrapbook - for your mom...

    Now for the next problem, food. Boy, I can tell you do not know how to cook. Just like a guy that I used to know that was gluten-free but his wife wasn't & she had no idea how to cook gluten-free & really was not interested in learning, so he did without. Okay, say ten thank yous that you are not in that mess.

    What you need are some hands on cooking lessons. See if you can find someone that is a good gluten-free cook that will swap cooking lessons for odd chores etc. or dishwashing !!!! Hopefully that is where the support group comes in. If not you need to be on here finding out where everyone lives. Now if you are close to Texas we are all about good food.

    Next, list all the foods that you CAN eat on here & we can come up with some things for you. I will be shocked if you have half the limitations that I do & I eat very well.

    Pack your plate for Thanksgiving, say gobble gobble, three times, :lol: leave the house & go to your friends house for the fellowship. smile when you get there so they will know that you are happy to see them!

    REMEMBER YOUR LIFE IS 10% WHAT HAPPENS TO YOU & 90% ATTITUDE. oops did not mean for it to be in all caps, oh well...


  17. HAPPY BIRTHDAY TO YOU, Happy Birthday to you...

    Sounds like you are in college. That is the worst, especially with no family or close friends.

    My birthday is Sunday, I will be ummm over 60... :) I will be spending the weekend by myself, but at my age, I treasure my time alone. Well, probably because I am still working & gone a lot, I am rarely home. I have all sorts of little treats planned for myself. Mostly I am getting ready for a scrapbook party that I am giving for my friends, next week. They have no idea that it is my birthday, just that we are having a party.

    I work for a great company & each department takes their people out to eat for birthdays. So all the people in my department will be going out to eat, & I get to pick the restaurant!!!! Some years that is the only celebration that I have. Our office also has cake once a month for all the birthdays. It really does not bother me, I just do not go, because I do not like to be around all those cake crumbs & people standing near me holding those plates of cake. :ph34r: They really go to a lot of effort, and this time they are adding ice cream so I can have something, & I asked for no chocolate & no nuts in the cake, so a lady in my department that is anaphylactic to nuts & allergic to chocolate, can have cake. She is as excited as we would be to have something gluten-free!!!

    You might hate this idea, but if you just dress up & walk in any nursing home, you will feel like a million bucks & all the residents there will love seeing you. You could take one flower & ask for a lady that does not have any visitors. I guarantee you that by the time you get to her room, you will have chatted with at least 3 other people that will have patted you on the hand & told you how beautiful you are.

    I hope you try it...

    Wishing you many gifts of the heart...

    Did you go outside & look at the beautiful full moon? I love a full moon & saw it on the way home from work tonight - very special !!


  18. I think that you will find that for the most part having a mixed kitchen does not work, especially for a child. At least that is what my friends have concluded, It usually takes them about a year to get to that decision. IMO, A child should have a safe place to be where they can eat anything that is there. Can other members of the family just eat their wheat things outside the home?

    Also, if you just replaced all her gluten foods with the same version gluten free. That will not work for people that need to heal. Too many grains & IMO the gluten free grains are somewhat CC & some of us cannot tolerate them.

    She should be getting extra special lunches for school. All her favorites, does she like shrimp? How about a shrimp cocktail lunch with veggies & homemade corn chips. If her lunches are a reward to her, then she is not as likely to cheat. Maybe once a month, pack a special lunch for two, so she can invite a friend to eat with her. Do things so that she is special & noooooone of the other kids' moms do it...

    I guess you are using gluten-free shampoo & soaps etc? I knwo she is young but is she using lip gloss, sharing lip gloss at school???? it has to be gluten-free What about your make up & hand lotions?


  19. I would not give her the gluten free grains until all pain is gone, or at least 6 months after going gluten-free. some people cannot tolerate those grains. You can make a peanut butter cookie with sugar, peanut butter (1 cup each) & 1 egg. It is an old standard recipe. There are other recipes with no grains. check out the SCD diet, I think their web site is called pecan bread, sorry not sure. You can google it.

    A lot of people do not tolerate tapioca flour. try sorghum flour & coconut flour - but IMO they are all cross contaminated, although I order direct from the mill & use them only occasionally...

    try white rice only - get organic if you can & wash it before cooking. Also try the Mission Brand White Corn Tortillas as a sub for bread. You can even make a pizza on them. Cut in 4ths & fry in coconut oil for chips... heat them in a skillet with coconut oil & put PB & Jam & bacon & roll up for a good anytime snack.

    also think about getting her checked for H. Pylori & get the doctor to check her appendics. It is common for us to have appendic problems, & gall bladder problems.

    Even if she is not having a definite problem with dairy, I would cut out dairy for a minimum of 6 months. & no soy, nobody needs soy.

    I hope this is somewhat helpful. & that she is better soon. That stomach pain is the worst there is.


  20. Angelschick, High Iron? Please get checked for Hemochromatosis, that is too much iron in your blood & can damage other organs including the heart. End stage of this if untreated, is that your skin will be reddish to yellow, then it kills you. My paternal Uncle died of this 50 years ago.

    The only treatment needed is blood draws under care of a doctor. Usually the only people that have it, well as far as I have ever heard, also have celiac disease.

    what happens is when you have celiac it keeps the iron lower, sometimes. But if you go gluten-free that check point is out & the iron gets higher. If you have Hemochromatosis I do not think you are supposed to eat beef or cook out of cast iron skillets.

    If you do have Hemochromatosis you can trace your ancestry back to the Vikings/Celtics.

    Any Irish in your family? Any red heads?

    oh & I second whatever Ravonwoodglass said, although I did not have time to read her post! B)B):)


  21. Well, I am gluten intolerant with double DQ1 genes. So I can only speak for myself & maybe the other people that have double DQ1.

    I can never eat wheat, rye, oats, or barley again. Unless, I want to kill myself. I have been gluten-free for 4 1/2 years, the best years of my life, so far. I am not going back to half a life. I do not care what any doctor says or thinks, I know what I know. & no, I cannot eat any so called gluten-free oats. I am also allergic to oats. I do not eat soy because I think it is unfit for human consumption. I have strong opinons about what I include in my diet. I do not need confirmation or agreement from anyone else.

    I have an extremely difficult time with cross contamination. I also cannot eat grains. A gluten-free grain like corn or rice or the occasional gluten-free home baked treat is a "cheat" for me. I know why, since I recently had the full panel on my mtDNA run.


  22. I am helping a mom with an almost 2 year old. the child does the same thing, refusing foods. She is doing better but the parents have been feeding her foods that make her sick for so long that she does not trust them.

    I got her a nice little Dora The Explorer insulated lunch tote & took it to her with some safe snacks. She ate those foods for days when she was sick from getting vaccinations...(another topic...)

    The mom is now also gluten-free, they both have problems, that is quickly being resolved by being gluten-free.

    You might want to think about telling your daughter that you are now giving her "new" foods that will not give her a tummy ache. She will understand more than you think she will. You might want to eat something & then wait a minute & say, Yes, my tummy feels good. Put smiley face stickers on her food containers. If she knows other kids that eat things that she cannot eat, point out to her that it is not a smiley face food. She will understand, kids are smart, talk to her.


  23. Yes, your mom does not need additional testing, she has DH. You might want to be tested though, since it is genetic. Regardless of your tests results, you might want to also be gluten-free with your mom. It does make the shopping & cooking easier. & you will feel better & have more energy on the gluten-free diet, if you eat the healthy way with lots of fresh fruits, veggies, meat, seafood, nuts & seeds. Use the gluten-free goodies like crackers, cake etc sparingly...

    be careful, your mom will probably recover & have more energy than you do!!! I am 62 & OMG I just keep getting healthier every year. I was wheat light for 10 years (thought I had an allergy, had never heard of gluten) & now I have been gluten-free for 4 1/2 years. I am also soy free & dairy free. Well there is the occasional chocolate with a little dairy. But at home I occasionally bake with Enjoy Life Chocolate chips. They are dairy free, soy free & gluten free.

    Most of my food allergies went away after I went gluten-free. But I still have a few, mostly things that I am not interested in adding back to my diet. Like beef, just not the same as it was 50 years ago. I am also corn syrup free by choice. I do eat some corn meal & tortillas etc. All this to point out that your mom might have additional food allergies that pop up...

    I strongly recommend your local support group. & Chicago - lucky you, there is a gluten-free Italian Resturant there, the information just came over the List Serv. Dalucianos, I hope you try it out. It should be totally safe for you as a "beginner" to eat there.


  24. Biopsy is a personal choice, & if you do it the biopsy might still come up negative, even if she has damage. The doc only samples a couple of spots. One of the complications of anesthesia is death. I personally would not subject a 6 year old to a biopsy. & there is also the chance that they perforate her intestine...

    There is another option, Enterolab.com can test up to a year after you have gone gluten free. They also test for the gluten intolerant genes, or so they are labeled. Anyway they test for the whole range of genes, not just DQ2 & DQ8. This information does not go on your medical records & you do not need a doctor's prescription, you can order the test yourself.

    If you have positive blood work, you have a diagnosis. & really that is enough on the records, I would not want to get any more on her records, if you can help it, no telling what problems with insurance companies that it might have in the future.

    Also, since you have symptoms & are going to get tested, I think that you will also be positive... It is inherited,so...