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  1. I am also dealing with the neuropathy....feet and toes mainly, but also some numbness going down my right leg.  All my blood panels, glucose etc. come back normal.  I realized this had started in a much milder way back before I was diagnosed, in early 2006.  Perhaps 8 to 10 years prior I'd had little symptoms, but didn't know it was neuropathy.  After diagnosis, I was not very good about compliance, unfortunately, and I'd be gluten-free for long periods, then I'd indulge.  Although I was mostly gluten-free for the last year, I've been 100% gluten-free for 6 months now, and aware of an increasingly serious issue with the PN.  My doctor called it "idiopathic PN", but of course, she knew zip about the gluten-PN connection.  However, after research she recommended a prescription level vitamin combo that includes bioavailable vitamins that can supposedly help repair the damaged nerves.  The 3 main vitamins are folate (in the form of Metafolin), Pyridoxal 5' phosphate (B6), and Methylcobalamin (B12).  I researched this stuff and learned that these are the more expensive, bioavailable forms that do not need converting by the body....and that I might be one of the people due to celiac whose body cannot convert the regular vitamins in their usual B6, B12 and folic acid forms into a useable form for my body, hence a deficiency that COULD account for the nerve issues I'm experiencing, much like diabetic PN.  

     

    Anyhow, this vitamin is prescription only, no idea why that is, and it seemed expensive (this mail order pharmacy was the cheapest I could find...costs me about $58/month).  I first searched out all the components to buy them separately at health food stores, and the price ended up virtually the same as the prescription give or take $5 or less.  But with the separate vitamins, to get the proper amounts I was taking a LOT of pills, which I hated, and the prescription was only one small pill taken twice a day.  So I gave in and tried the prescription (never covered by insurance, by the way) and I've been taking it since Feb. 5.  I was told it could be 8 to 12 weeks before ANY improvement is noticed because what is happening is the vitamins are aiding the slow process of helping the nerves regenerate properly.  Right now I'm at the 11 week point, and I'd say things seem ever so slightly better.  I've decided to give it another 3 months and evaluate more then at the 6 month mark, although I realize it could take longer.  If I see more improvement, I'll keep going.  The prescription version is called Metanx, and it is dispensed thru a particular pharmacy that your doctor can prescribe to (mail order).  They do offer a money-back guarantee, for what that's worth.  For me, the jury is still out on whether it works or not and I can't say for sure it's helping or not at this point 3 months in, but I'm willing to give it a long enough try to see what happens.  I'll post back if good things happen over time.  I think I'm going to take this stuff for at least 9 months and then re-evaluate.  Nerve regeneration/repair is apparently not a quick process. I really hope the vitamin mix helps because I really hate how my feet and toes feel.  

     

    I'll add that I've finally come to terms with compliance with a gluten-free life, but it sure took long enough.  I've been a really dummy about it, but I'm finally gluten-free for life now and doing fine with it.  No more denial.


  2. I have also come to realize I have major issues with corn.  I always knew it upset me and was careful with it, but now it's really a problem and I'm avoiding it as well as gluten.  In fact, I have issues with pretty much all grains.  I get away with occasional brown rice, but don't eat much and I eat it quite rarely.  But all other grains are problematic, as are the gluten free baked goods because those also contain problematic starches and other grains to make them taste good.  Corn and tapioca starch (in so many gluten-free foods) really upset me almost as much as gluten.


  3. My mom, as it turns out, has two celiac genes.  She probably had mild evidence of it from childhood (she remembers health issues, but nothing horrible).  At 46 (this was 1968!!) she had to have a hysterectomy...and that triggered her full blown celiac.  Over nearly 2 years no doctor could figure her problems out....they mostly told her it was "in her head."  She nearly died....when she was finally diganosed by a doctor who actually knew a bit about celiac disease, she weighed 89 pounds and the villi in her intestine were gone.  There were no gluten free foods in the 1960's, so she had to eat pretty simply.  Her condition healed within a year, her villi regenerated within about 8 months, and she regained her lost weight.  She has been scrupulously gluten-free ever since, although any cross contamination makes her violently sick.  Mostly she can't eat out because she is so reactive.  AND....she is about to turn 92 and is in otherwise great health!


  4. Just wondering if there are any out there, with gluten intolerance, who have seen their ability to tolerate dairy come back after being gluten-free and feel like this is a clue to conclusively deciding 'it's celiac'.

    Would this be true or possibly true? I'm assuming that with gluten intolerance one's villi is not damaged in the same way as celiac to cause lactose intolerance. Am I off base on this? Thoughts, stories or articles appreciated.

    Thanks! :)

    I spent my first 55 years thinking I had serious tolerance issues with dairy. Although my mom had been diagnosed with celiac disease 40 years ago (she nearly died from malnutrition before a bright doctor recognized and diagnosed her), my symptoms were not like hers so I didn't think I had celiac disease. When I got sick myself (still somewhat different set of symptoms from my mom, and I did not lose weight) and finally realized I also had celiac disease, I went both gluten and dairy free for maybe 6 or 8 months. (Enterolab's testing showed I was casein sensitive, and they recommended that I NOT eat dairy and also stated it could also damage my intestines....I don't know how true that is or not). So after this amount of time, I re-introduced dairy in a limited way and found it no longer bothered me in the same way as before. It seemed that a bit here and there wasn't a problem (whereas previously, any amount of dairy upset me horribly). Over time, I learned that more than a little dairy still caused problems. A bit of hard cheese didn't seem problematic, a bit of cream or half and half didn't bother me, but yogurt, cottage cheese, and dairy on a daily basis still gave me issues. Dairy also bloats me up. So in the end, I really minimize it, and I've done well enough with this for several years now.


  5. We went to Olive Garden last night. They had a limited gluten-free menu including a pasta sauce on rice noodles, but other than that mostly grilled steak, chicken, salmon and veggies. I got a mixed grill (chicken and steak) plus veggies which were asparagus and summer squash. It was really good! Of course, their menu had the usual disclaimer that they couldn't guarantee everything was 100% gluten-free with no cross-contamination.


  6. I'm not sure where to post this question, so I'll put in under "coping with". Every time I read information on Celiacs Disease either on-line or in magazines, many articles begin by saying that Celiacs are at increased risk of a whole range of health problems. They make me feel that at any moment I'm going to keel over. My question is, if you follow the diet to the best of your ability, and do not ingest gluten, are we still at higher risk for the long list of ailments, or are we no more at risk than a non-celiac? Does anyone know if there are specific health complications directly related to celiacs which are not diminished by following the diet? My family doctor is not very informed on this subject and changing to another is almost impossible (I'm in Calgary, Canada and there is a family doctor shortage). Thanks in advance to anyone who can shed light on this.

    Let me give you a very reassuring reply. My mom was very very ill and nearly died from undiagnosed celiac disease when she was about 46. At her time of diagnosis she weighed 85 pounds or so and her intestinal walls were smooth as a billiard ball, no villi left, and even her stomach was a mess. So she went gluten free, carefully so because with even the slightest bit of contamination she gets terribly sick. She never had ANY further health issues, has always been totally healthy. Next week she turns 90!!! And no one thinks she is 90, she looks great, her mind is 100% like always, and she has no health issues at all.

    The key is to remain 100% gluten free, even if you don't get as obviously sick as my mom does. Your gut damage will heal. Even as bad off as my mom was, on a gluten free diet she healed pretty quickly. She had a second endoscopy after about 6 months gluten free, and most of her villi had regenerated and despite how very sick she had been, she quickly got over all that and gained back the necessary weight.


  7. Recently Wikipedia has added information about the HLA-DQ . Look at HLA-DQ for an overview then look at HLA-DQ1 and HLA-DQ2.

    Did she have the molecular analysis of the DNA alleles or did she have the serology test for the celiac antibody binding site on the antigen receptor cell? Could you write down the results as shown exactly on the report. What you wrote seems to shows one DQA result and one DQB result instead of 2 results - the other set of DQA and DQB are missing.

    We inherit one DQA (allele) and one DQB (allele) from each parent. So if both the A allele and the B allele were tested then there should be 4 results. Some labs test only the two HLA DQ B alleles (Enterolab.com).

    Can anyone explain more about the above? Celiac disease runs thru my family. My mom has double celiac genes. Many in my family got tested via Enterolab. We want to find out what my father's 2nd gene was (from my test we know one of them...DQ1 0604, which is a gluten sensitivity related gene), and my sister got a gene test thru Kaiser, which would hopefully reveal what our dad's 2nd gene was. She said the results related to her by Kaiser were stated this:

    I am in DQ2

    A105

    B102

    Both of these could have come from mom too I was told! 40% of people with this profile are prone to celiac.

    What???????

    Our mom got tested at Enterolab, where she learned she has DQ2 0201 + 0201 (two identical celiac genes, one from her mother, the other from her father). I can't figure out how this relates to my sister's oddly stated gene results mentioned above. Her statement that both of these could have come from our mom...that doesn't make sense to me as one is from the father and one from the mother. Through our mom's testing,, we KNOW all the kids got one of the 0201 genes. Since our mom has double identical genes, how could one or the other have come from her, having two identical genes she has only one possibility to give to us all. And which of those above genes equate to our mom's DQ2 0201 gene? Is this result saying our Dad's 2nd gene was also a DQ2 celiac gene, just a different type than our mom's?

    Any ideas/input?


  8. It's really quite amazing how many people (who have no "issues" or at least who think they don't) are totally insensitive and uncomprehending and unempathetic about it. Forty years ago when my mom was so sick and as yet undiagnosed (because so few doctors knew anything about celiac disease), she had a whole string of doctors who told her it was in her head. As for other people in her life, they were of course totally ignorant about celiac disease and its effects, so they often seemed to think my mom was overacting about it all...."Can't you eat just a little bit of gluten?" She should have invited such people into the bathroom with her as she threw up for hours and of course the D that went with it all.

    I think you just have to accept and understand that this is how people often are, and how they often don't take this seriously. Nothing you can do about all this, either, but learn to not let it bother you!


  9. A few comments on my experience. I was very sick by late 2005, at which time I was 56. Things were heading towards a crisis level, and as I researched symptoms I was led here and other celiac related places. Despite having a mother who nearly died in her mid 40's from undiagnosed celiac disease (she was down to 85 lbs, couldn't keep anything down, and this was the mid 1960's and doctors were almost totally ignorant about celiac disease. They knew about tropical sprue and kept asking her if she had been in the tropics!!). After her diagnosis, being gluten free (very hard at that point in time) healed her fairly quickly. The told her that her villi were nearly destroyed (hence the weight loss) and her intestines looked smooth as a billiard ball! After 6 months gluten free she had a repeat biopsy and she was mostly healed. She is now about to turn 90 and she's unbelievably healthy...as long as she doesn't get a smidgen of gluten. She DOES get glutened periodically, always something imperceptible, and she gets unbelievably sick due to her extreme sensitivity.

    On to me....since my symptoms were varied but not like my mom's, I always figured I couldn't possibly have celiac disease. Rather, I knew I had big issues with dairy and figured that was the source of most of my problems. I ate minimal dairy, but for some reason, I also didn't eat all that much gluten, either. But I had serious digestive issues my whole life, from infancy onwards. It was mostly just a fact of life....until late 2005 when I reached a critical point where I was sick so much and felt like virtually ALL foods didn't agree with me. I had rather a lot of acute symptoms that were getting worse (won't detail them here), but that's when my search began. I got a celiac panel blood test, although from what I've read over the years, it's possible it wasn't the full group of tests needed. My GP was pretty clueless about what to order, and even the blood lab called up to ask the dr. what exactly she was ordering. I think she ordered one or two things, but not all of them. It came back negative, which I have since learned isn't definitive anyway. A positive blood test tells you something definite. A negative test isn't so solid...you still might have celiac disease even with a negative blood test.

    Not having the endless $$$ to pursue all this thru my insurance, who given the negative blood test wouldn't pay for anything further, I learned about Enterolab. It seemed like an interesting thing, so I ordered the gene test, all the stool tests, and a casein test (plus soy and some other things). My gene test came back with a definite celiac gene (0201) and a second gene that was identified as related to gluten sensitivity. I realized the presence of that celiac gene only told me I had a predisposition, nothing more than that. And the other tests revealed definite reactivity, but again, I knew they were NOT a diagnosis of any kind. My casein test also showed a sensitivity.

    I went gluten free and my symptoms disappeared one by one. After about 6 months I felt like a different person. I was pretty good for a long time, but have had various bouts of non-compliance and I learned that if I am eating gluten somewhat regularly, after a couple of weeks (aside from various digestive issues which show up early), I was starting to get something new: severe arthritis type pain in my hands, wrists, fingers. Stopping gluten made it go away after about a month or two gluten free. I've done this a few times, and the connection is very clear.

    Dr. Fine: I was/still am a bit bothered that he hasn't published his supposed research. His stool testing method is controversial in some circles (especially among those less knowledgeable who want to stick to the decades old methods of diagnosis). I do know that medical people who work "outside the traditional box" are very frequently shut out of the big medical publications. Still, he has a lot of data from all his years of Enterolab testing. I was never contacted after my tests to inquire about my results, if any, of eating gluten free. I was initially surprised at that, and I still don't understand it. It seems like if he were really doing research/studies to later be published, wouldn't he want to use this big data base of testers who passed thru Enterolab?

    All this said, Dr. Peter Green, one of the biggest names in U.S. celiac knowledge, in his very well known book "Celiac Disease: A Hidden Epidemic" mentioned the Enterolab method of testing in a positive way. I have also seen it mentioned by a variety of others.

    A few years ago Dr. Fine was featured speaker at a local celiac group meeting. I was extremely impressed with what he said and with him in general. He knows his stuff, and I had the opportunity to ask him some questions and was generally pleased with his answers. He most certainly did not come across as a quack or anything, although I will say he's a quirky kind of guy who appears to be interested in a lot of things, including his music.

    My mom out of curiosity got herself gene tested, and found out she is a double celiac, two copies of the same gene. This may account for why she is so sensitive. We never knew my grandmother had a gene, but she died at 99 so it didn't kill her. She did have severe arthritis, though, and who knows what else that she just didn't discuss. She was always very thin. After my test, I tested my two kids and they both got my celiac gene. Since my mom had two identical genes, me and my 3 siblings all automatically knew we had at least the one gene. My brother tested his two kids and they both also had the same celiac gene, and surprise, my nephew had 2 celiac genes (different ones), so he got one from his mom. She had no idea, but given some of her health issues, it's not surprising to me!

    Well, long long post, but I really do find Enterolab useful and I'm grateful for the information I was able to get from them. I fully realize it's not a solid celiac diagnosis, but the gene test tells me my predisposition, and I know how I feel when I eat and don't eat gluten. Day and night. Whether you have celiac disease or it's just gluten sensitivity, the "cure" is the same: you don't eat gluten either way. If being gluten free changes your health for the better, isn't what you do obvious?

    I guess my only complaint in NOT knowing "for sure" is that there are times here and there where I can indulge in sporadic gluten eating and I get no noticeable reaction. Other times I will react. Of course, if I have celiac disease I shouldn't eat any gluten ever, but not knowing, I guess I push the envelope sometimes.


  10. Enterolab testing was useful for me because I had minimized gluten to the extent that I couldn't/wouldn't get anything definitive on a traditional blood test. What the Enterolab testing told me was this: that I had a celiac gene and a gluten sensitivity gene, that my tests showed reactivity, that I am casein sensitive, and that no sensitivity showed up for soy or corn. None of this was a firm diagnosis of celiac disease or anything else. Given that my mom has celiac disease in the most severe way possible and given that I've had a lifetime of digestive problems, what Enterolab did for me was encourage me to pay attention to the possibility that I might have it and that I was most certainly predisposed to it.

    So I experimented a lot with diet and learned that I'm better off without gluten, without dairy, without legumes of any kind, without starches and without sugar. A big list, but now I know how to eat to feel good. Perhaps all the sensitivities I have are somehow related to gluten. Or not.

    Although my food issues were largely digestive my whole life, my reactions have morphed into arthritis type symptoms in my hands, fingers, wrist. This occurs if I eat gluten, and goes away when I don't eat it. The connection is obvious and glaring and I can't ignore it. The digestive issues still occur, but the fact is, unless I want to heavily eat gluten for rather a long time to create intestinal damage and thus get a firm diagnosis, I'm stuck with the knowledge I have at this point. I see no reason to ignore what I've learned about how I should eat. Whether or not I **had** active celiac disease at one point is immaterial. What I know is that IF I EAT gluten, I COULD get celiac disease and all that comes with that diagnosis. And what I know without a doubt is that gluten and certain other foods make me feel horrible. AND....I most certainly do not need a usually somewhat clueless doctor to officially proclaim that I have celiac disease. Fact is, if my test were negative and I were told to go ahead and eat gluten etc., I absolutely know how I would feel and I don't want to feel that way any more. So there! Therefore, I eat how I should eat, and it has paid off all around.

    I don't want to risk getting active celiac disease, I feel fabulous when I eat gluten free and also don't eat the other things listed above except very rarely, and that's that. So this is the overall value of Enterolab, in my opinion. I'm grateful to Enterolab for providing me with useful information I was unable to get otherwise and a starting point for action, and therefore it helped me figure out a good way to eat to preserve my health from that point onwards.


  11. I absolutely believe your symptoms CAN vary. Mine certainly have! I think possibly the variety of symptoms I experience have something to do with the nature of the food I eat, things in combination, and it's not strictly due to gluten, but rather gluten AND other things I'm sensitive to. I can get gas, or the big D, or heartburn, or joint pain, or sometimes a horrible facial rash, or quite often mouth sores within an hour or two (or sooner). It's all over the board with me, and not usually the same two times running.

    On the other hand, my mom, who has the most severe reactions possible to gluten, she gets violent ill within a half hour of accidentally getting any gluten at all, no matter who small the amount may be. I'm glad I don't react like she does!


  12. I also had trouble with the "Think Thin" bars. In fact, I have trouble with ALL bars so I no longer eat them. As for your calories/weight loss, this was also the case for me. I really can't eat as much as I used to, and even 1600/day is too much for me.

    In addition, through the 5 years since realizing I had gluten issues, I have learned that the list of what I cannot eat is rather long: none of the grains, NONE. No corn, no rice, no alternate grains, none of that. All bloating, all upset me to varying degrees. I learned that none of the gluten free goodies agreed with me, mainly due to extremely high sugar content and various alternate grains. I don't eat starches or any of the nightshades. I have serious issues with insulin responses, and that means I have trouble with fruit, sugar of course, and it goes on and on. Bit by bit I've learned what does and does not agree with me, eliminated (mostly) those things that don't agree with me or at least, I eat them very rarely. As a result of this and also watching calories, I've lost 20 lbs. since March 1. It comes off very slowly, but it comes off.


  13. Hi everyone,

    I am not positive if I have an allergy for severe sensitivity to wheat...but I stopped eating bread/pasta/cereal/cracekrs, etc, and my skin cleared up for the first time in years, and my GI issues improved 90%. It is like a prayer was answered, because NO doctors could help me, and I went to a lot. They all said IBS. Psh.

    I know I am lactose intolerant but I just use lactaid milk. I tried so many acne meds and none helped until I cut out most wheat. My GI system is very sensitive...I can't eat the wheat based foods, or milk, but I also cannot eat avocados (especially WITH bananas...it caused me to get very sick when the two were eaten together), I can't eat a lot of corn or beans, either.

    It is depressing to me sometimes when I DO want to eat normally with my friends but if I don't stick to my fish/vegetables or whatever I know I will pay. My gut is not 100% healthy, still. But my life is a lot more manageable now, knowing what I choose to NOT eat helps me feel better. I finally don't feel sick at least ALL the time.

    But there are times my gut still acts up and it can be embarassing if I have to run to the bathroom. Although my quality of life has greatly improved, I don't like feeling bad about it sometimes, still.

    Can you give me any advice? I am really open to hearing from everyone and how you cope/deal with having such a difficult issue in your life. I am just so happy when I am feeling healthy, but it really limits the "food" part of my life. I am completely willing to give up many foods, but sometimes you think you've done well but still end up with GI issues, and that's the part that depresses me. Especially now that I'm dating again! I have to be sooo careful, especially if we go out to dinner!

    Thanks.

    I wish I had a "magic bullet" bit of advice....but it took me a certain length of time to come to terms with how I have to eat now. I eventually reached a place where I know exactly what I can eat to feel well, and I've made peace with that. As a former emotional eater, that was hard to break but I think you'll eventually get there. I think it all changed from "I can't eat this" to the more peaceful attitude of "I could eat that but I choose not to eat it because it makes me sick."


  14. We ate out last night. After being assured it was gluten-free, I ordered chicken piccata, which came with some veggies and a small salad. An hour later I was all bloated and had horrible heartburn, felt horrible. I don't trust any restaurant any more. They'll tell you anything.

    Then today I had an allergic reaction with hives. I don't think this has ever happened to this degree before. I had breakfast...eggs, bacon, green tea, a small cherry tomato. Previous to breakfast I had 4 Newman's organic prunes (nothing added to them, just prunes, and they're lovely). Anyhow, after the eggs etc. I felt my face burning, ears too, then arms and legs and chest. I was red as a beet and had hives! I can't imagine what caused this: I eat eggs every day. I've never had a tomato reaction before, although I don't eat a lot of tomatoes. I did read that you can react to fresh tomatoes, particularly the seeds and juice can be allergenic. But this has never happened before. Could it be the prunes? I've had them before, too, but I don't eat them often. Very weird...


  15. Hi,

    I started having joint pain seven months ago and it was all over my body ( hands,feet, ankles,, wrists, shoulders, neck, back, and other places) and couldn't barely even walk for a couple of months. I went to the doctors where I was diagnosed with hyperthyroidism and hashimoto. After a while the pain did not get any better and I went to the joint specialist and he diagnosed me with celiac disease about three weeks ago. I have been eating completely gluten free but still have flare ups. I also have stopped eating nightshades because they would make it worse. But I noticed that have eating dairy, my joints would get worse throughout the day. Is this common to have problems with dairy? Also, is there any natural medications that I can take to relieve my pain and does anyone have some recipe ideas that are gluten, dairy, and nightshade free?

    After 55 years of digestive issues, then figuring out I was celiac, then being relatively free of gluten on and off (but lots of slip-ups due to non-acceptance on my part), my symptoms became more varied, and not just limited to digestive reactions. After a 3 week binge of having some gluten here and there, one morning I woke up with hands/joints so sore I literally couldn't grasp a glass of water. That really woke me up more than the other things did. It took about 3 months of being strictly gluten-free for it to gradually go away. But it came on overnight, like I said. At the worst, I just put a lot of heat on my hands, occasionally took Advil, and slowly it went away. I also cannot eat nightshades at all, and I can't tolerate starches/potatoes. I was diagnosed as sensitive to casein, and went dairy free for a long time as I was going gluten free. After 6 or 8 months gluten-free, I tried dairy again and now find that I can handle LIMITED amounts of it. But I don't eat yogurt (which I love) any more, that bothered me. I really do and feel best on a diet of meats, fish, limited green veggies, very very limited fruit (I don't handle sugar well either). And I gave up on the gluten free baked goods, I didn't do well with all the various gluten-free flour items either, they really upset my entire system.


  16. You really have to consider how you FEEL when you are gluten free. My mom is celiac and has the severest reactions possible if she gets any. I was never like that, yet all my life I had continual digestive issues. Since I didn't react like she did, I figured I didn't have the problem, although I always thought I had issues with dairy (and I thought that was the only problem). I always subconsciously minimized gluten, but my reactions really were getting bad 4 years ago (age 56, no less). A blood test showed nothing, so therefore no way to request or need a biopsy. I did the Enterolab panel, learned I have my mom's celiac gene plus a gluten sensitive gene from my dad, and the other tests showed inflammatory reactions. So I've never had a solid celiac diagnosis, but I've finally learned that whether I do or do not have celiac disease (or active celiac disease), I've seen evidence through my diet that gluten makes me feel bad in a variety of ways (headaches, digestive upsets, and more lately, terrible joint pain in my hands). I feel GREAT when I don't eat it.

    So there you have it. You need to get your head around the fact that for many, many people, gluten is quite simply a POISON. You wouldn't eat other poisons, so why eat this one. My personal opinion is that gluten probably bothers most everyone, celiac or not. Unprocessed wheat is a poison, you would never eat it in that form. Remember the saying "Just because you CAN eat it doesn't mean you SHOULD." Look at the massive issues in our society with Diabetes 2, heartburn etc., look at all the drugs people take to deal with digestive upsets. I had horrible heartburn, too, but haven't had it once since going gluten free. Gluten is just a delicious tasting poison, and we should all probably consider ourselves lucky to understand how it affects us. So many people don't get it, and who knows what physical repercussions that will have down the road as a result of eating it so much, causing inflammation endlessly throughout their body. Results include cancer, arthritis, the triggering of other auto-immune diseases.

    It's a process (or has been for me), but I've finally realized I must never eat it again, and I've learned to not view that as a difficult thing, only something necessary for my good health.


  17. I'll throw in a few empathetic comments because I've struggled with this myself. After a lifetime of dealing with digestive issues, one gets accustomed to that to a degree. I wasn't as severe in my reactions as my mother is. I didn't figure out what was going on until I was about 56. And even then, since I had minimized gluten for several years to the extent that it didn't show up in a blood test, I got the Enterolab testing panel done. I had the celiac gene, the tests showed supposed inflammation. But no gold standard definitive diagnosis of either active celiac disease, or merely gluten intolerance, so I've been left not really knowing for sure. I'm sort of thinking this vague situation contributed to my on and off the wagon behavior the last 4 years. Despite all this, my gut feeling and the physical evidence points to the fact that I should never eat a smidgen of gluten. Never.

    They say you crave what you are sensitive to. My severely celiac mom found that to be true with bread, etc. She craved and ate tons of exactly what made her sickest. Probably same with me...and my weakness has always been pastries and cakes, and to some degree, bread. Sometimes I totally got away with eating it, and that probably fueled future behavior. Other times I'd get inexplicably sick, but I would tend to attribute it to other things. Compare this to my mom: if she would get one crumb of gluten she'd be violently sick within an hour or less. So part of my denial came out of not seeing the same reactions and reaction time as my mom.

    What really got my attention was when my reactions turned more into joint pain...specifically, in my hands, thumb and wrist. I could live with the digestive upsets....after all, I'd had that my whole life, it was familiar. But the joint pain was horrible and I was really driven...FINALLY...to get rid of it. Cutting out gluten entirely made it go away over time, although it took a few weeks. I've finally accepted my need to 100% avoid gluten, but it has been a slow road. I'm a person who loves certain foods, I didn't want to give all these things up, but I learned it was pretty much ENTIRELY a head trip to get your thoughts around doing this. I've learned along the way that giving up gluten yet having an occasional cheat here and there simply DOES NOT WORK. It leads to total relapse into eating gluten, I've seen that with myself.

    Here's a bit of what I found, too. I wanted to drop about 25 lbs so I started the Atkins diet a month ago. On Atkins, eating meat/chicken/fish, green veggies, small amounts of cheese, eggs....your appetite and cravings really just evaporate completely, and this has enabled me to be totally indifferent to the bad foods which previously tempted me. Before doing Atkins, I also learned that I really do have digestive trouble with other grains as well...the gluten free flour combinations plus the sugar really upset my stomach, PLUS...I found they lead to cravings too, and when I was in baking mode doing lots of gluten-free baked goods, I often got off track and back into the gluten foods. I don't know if my digestive system is just too sensitive after so many years of eating gluten, or if I'm just a very sugar/carb sensitive person, but I learned through doing Atkins which simple foods suit me best. I cannot and will not go back to my former "cheating ways", but I realize I will always have to eat carefully so as to not trigger the cravings. And I'll lose my extra fat in the process....it's coming off quite effortlessly on Atkins (a much maligned diet, I'll add....it's NOT a fat filled diet as many people seem to think).


  18. I just recently went gluten-free due to enterolab results. I know for sure one of my children needs gluten-free and the other 2 react to dairy, but not sure about vice-versa yet.

    Does anyone eat dairy free and gluten-free? do you cut out everything that has a bit of milk or just main ingredient of milk?

    ;) Or did u find that gluten-free helped the dairy issue and now u can eat it?

    THANKS!

    I spent my entire life thinking I was unable to handle dairy, didn't suspect gluten even though my mom has celiac disease. Doctors always made it seem so unlikely that I would have celac too, especially since I didn't react in the severe way she did. And we always thought my issue was dairy.

    When I finally got tested and realized I had severe gluten problems if not also celiac disease, I went gluten free. I had Enterolab test casein too, and they said I was sensitive to it and to avoid it completely. So I did that for 6 or 7 months. I actually found it harder to avoid dairy than gluten! Anyhow, after that time away from dairy, I put a little bit of dairy back into my diet to test the waters and found I actually COULD handle modest amounts of dairy. So now I do have it, but I really limit it. As a minor ingredient in things, it doesn't bother me. A small bit of half and half in coffee doesn't bother me. A bit of cheese here and there is fine. But as I said, I'm careful, and I seem to do OK with it on that basis. A bowl of ice cream, for example, also yogurt, that's too much and I'll have problems with that amount.


  19. I was diagnosed with Celiacs three months ago and do not have hyperhidrosis.

    I wanted to reply though because my 19 year old daughter was diagnosed with Hyperhidrosis at least 10 years ago. We tried many topical and oral medications (Drysol included) and found absolutely no relief. She experienced hands, feet and armpits that were perpetually wet. Her hands and feet would drip moisture nearly constantly. She adapted by avoiding touching, dressing cooly year round (which isn't healthy in the midwest in January!) and she learned that wearing certain colors masked the armpit stains and evidence of moisture. She suffered with the disease and it's effects for many years, years that are challenging enough for young girls. In the spring of 2009 we discovered a potential surgical procedure that "nips" neurons in the ganglion chain, reducing the messages to the sweat glands. After exploration and pre-testing she had the surgery in May of 2009 in Rochester MN. It was quite successful. Her hands showed a 90+% improvement, her feet a 50+% and her armpits a 90+% improvement. She is greatly pleased with the surgery. It was one night in the hospital (24 hours approx. total stay), full anesthesia, three pre-surgery appts and one post. Because of the severity of her disease it was covered by our insurance.

    I guess if at any point a tie is discovered with Celiacs and Hyperhidrosis I would be very insterested in the information. Per my doctor's suggestion, at this point we are not having my children tested for Celiacs because they are not symptomatic and for long term insurance purposes I don't want them labeled as "pre-existing".

    My 23 year old son also has hyperhidrosis, and he also had the surgery mentioned above, back in 2005. The worst for him was his hands, and that was 100% improved by the surgery. His feet still sweat, and he gets mid body "compensatory" sweating, especially in hot weather, but the surgery was all worth it to him to get rid of the hand problem. He has the celiac gene and I believe he is affected by gluten....he is currently being carefully gluten free and he feels much better in all respects. However, I don't think there is any connection....my understanding of hyperhidrosis was that it was due to a problem with overactivity in the sympathetic nerve which controls sweating within the body.

    I'd also like to add that we tried virtually every possible treatment out there and nothing helped much, which is why we finally resorted to the surgery, which was done on an outpatient basis, by the way. My son is glad he had the surgery, very glad.


  20. After going gluten free, I started trying all the various gluten free goodies out there....mixes, cookies, cakes, etc. What I found was that my system was unable to handle all those OTHER grains and starches, and I had problems with sugar as well. Also dairy. I had to eat very carefully for a long time....many months....and even now nearly 4 years later I have to be careful and eat small amounts of these things. In the beginning, though, your system is a mess and just can't deal with things that are hard to digest.


  21. The really crazy, insidious thing about celiac disease (and this is probably also true of gluten intolerance without celiac disease) is the nature of its symptoms: they can be all over the map, and can even vary with one person and vary from reaction to reaction. It's not necessarily all the same all the time.

    Take myself: I see some similarities with what you have experienced. I spent my ENTIRE life from zero to about 56 thinking I was severely lactose intolerant. And I was, but it wasn't as simple as that. My mom was finally diagnosed with celiac disease when I was about 16, so I knew about that. I knew I had a chance of developing it, but since whatever was going on with me wasn't the same as my severely reactive mom, I dismissed celiac disease as a cause of my own complaints. When I finally began to suspect celiac disease, I went the Enterolab route and learned I had the celiac gene, and the testing revealed antibodies suggestive of celiac disease as well as reactions to casein in dairy products. Since all this came about, I have never been eating enough gluten to get a solid blood test diagnosis, and interestingly, I can't bring myself to eat enough to do that test. That should have told me something, right?

    I've struggled with being 100% gluten-free, but my slip-ups have been interesting. One time after a one month bout of gluten gluttony with no huge reactions, literally overnight one day I woke up with hands, fingers and wrists that hurt so bad I could barely hold a glass. That frightened me back into compliance again, and the aches disappeared.....very fast at first, but it took a few months to completely go away. On other occasions, I've felt very sick a few hours after eating.

    I've learned in the last 5 years that while I can always "get away" with eating a little gluten here and there, with no immediately identifiable reaction, repeated eating of it will eventually create a health event of some sort. In the end here, I've reached a point (long time coming) that I simply MUST avoid gluten, PERIOD. Even without a medically accepted diagnosis, the writing really is on the wall. And from everything you read out there these days, it is looking more and more like NOBODY benefits from gluten, especially considering the mega-intensity gluten that has evolved over the years.


  22. The fact that your body can now absorb more nutrients is not what would cause weight gain. I found that I gain when I'm eating pretty much ANY grains or flours. After a spree of eating all the possible gluten free goodies, I realized I had to cut them out in the same way you would cut out regular foods made with wheat flour. If I really limit carbs.....and that includes being very careful with fruit, and stick to meats, eggs, limited cheese and very little dairy, and none of the gluten-free baked things, then I can lose weight.