gfpaperdoll

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.

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.

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!!!

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?

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.

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.

I would get this all typed up & get it notarized & have her doctor sign in. Not sure if it is still the case, but many years ago, if a document in Mexico was notarized, they thought it was a legal document, the equivalent to being recorded in u s

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...

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.

SBJ 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.

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 !!

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.

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.

apoppy thank you so much for posting this. That is so wonderful that you have made the connection, to HS & gluten. I do not have HS, but I do see the connection as a friend of mine has it, but also has gluten intolerance & is on a gluten-free diet. I forgot to check how long you have been gluten-free now, but you have to check for cross contamination, after a few weeks. & really if you can it is best to not cook gluten foods, just cook all meals gluten-free, if at all possible. You certainly do not want to cook with any wheat flour because it poofs up in the air & gets on everything & you breathe it in & it makes you sick. Be sure to replace your porous items like cast iron skillets (or treat them in the oven , I just got a new one) & teflon - stainless steel pans are better, new wooden spoons, new pasta strainer, & watch your old cook book if it is like mine it is covered in flour. I envision the day when a diagnosis of HS will be the same result of getting a diagnosis of DH, & that would be an automatic diagnosis of celiac disease. I hope that you will be able to convince your doctor of this new "treatment" & he spreads the word to other people with HS. Also, if you are on any HS boards, please post about your findings, I tried but I do not have HS & I was really not welcomed with my "cure". Those people are used to buying & trying everything that comes down the pike. They just cannot think that the everyday food that they are eating is killing them. Please PM me if you need any recipes or any help with the diet. Although, I pretty much eat grain free whole foods. Not much processed stuff in my kitchen. I have found that a combination of sorghum flour, tapioca flour, & potato starch makes an excellent baked product. Be careful with Bob's Red Mill stuff, I cannot eat his stuff, just a little too much cross contamination. I also cannot eat the gluten free Mary's Gone Crackers. So be careful about things that you think are gluten-free but might have some CC issues. I am very very sensitive & can tell within 20 minutes if I have gotten glutened. I am a good "canary in the gluten mine". I do recommend the Enjoy Life chocolate chips, no gluten, no soy & no dairy. This is indeed a Great Thanksgiving. Thank you so much for the post. & congratulations to you for discovering your way to good health. P.S. yes, don't let anyone tell you to eat gluten ever again. I do not know your husband, but sometimes a spouse gets used to a certain routine & worries when a change occurs, even for the better. For some of us when we went gluten free it changed our personalities a lot, for the better. & heck, we just feel so darn good, energetic & healthy, we drive most people nuts! I got badly glutened at one of my regular restaurants a month or so ago, & I thought oh, this is what most people feel like all the time. it was an amazing realization.

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?