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  1. I have this problem too. I have been to the RE and to other docs. For me, I think it is just messed up hormones that I have been trying to treat herbally. I may start myself on Progesterone cream in the next couple of months if things do not respond to my current regimine. My docs have prescribed the oral Progesterone, which I am not taking. I would rather try the cream first.

    The book everyone recommended is really, really good. Every woman should own a copy.

    Sorry you are going through this.

  2. You know what's wierd, is that my FIL gave me his liquid B from GNC since I was out of mine...and it does not have nearly all the B vitamins that my Liquid Health B's do...but it has lots more B 12 and I have been taking that faithfully everyday until I can get my regular Liquid Health again. The GNC has 1000mcgs in it of B12, so I have been getting more b12 than I usually do.....maybe for me, I need the bigger complex of the B's.......who knows.

  3. I wonder if this is why my numbness and tingling has come back lately? I will get it if I have been glutened like on vacation or something and it will last a couple of months or so! But you know, I improved when I was taking a liquid B-Complex with mega doses in it, and I have been off of it for like a month because the HFS where I get it was out and it takes weeks for them to get it in..... :angry:

    I should just order off the internet.

    So I wonder if that is what is causing my recent issues. I also have muscle aches and weakness too. When I think about it, I realize my symptoms returned around the time I stopped taking the liquid B complex.........


  4. OK. So I am not exactly brand new to this, but I think I am realizing you can't be too careful with this disease. I am trying to really get a handle on any possible sources of gluten in my everyday life. I feel OK, but I have a lot of weird symptoms still that come and go and unfortunately I am probably too relaxed about accidental glutening. I really want to make this as UNstressful as possible. I don't mind paying for a book or a list or whatever--I just want recommendations for RECENTLY or FREQUENTLY updated food/products lists. I have seen the Delphi thing mentioned a lot but I have no idea what that is.....


  5. I would call the company about the malt ingredient. I once took enzymes that were not gluten-free, but they were wheat free (duh--it said it right on the bottle :rolleyes: ), and I got sooooo sick for days, because I kept popping more enzymes, thinking they would help!!!! When I called they explained the ingredient that contained gluten and it was a malt product......just check to be sure.

    Do you mix the ACV in water or something?

  6. Beezlebubble,

    I dont really feel my heart pounding...if I am really still I can feel my aorta pulsating (I think), and I think that is what I see "beating" in my chest, right below the sternal notch. Sometimes the "beating" looks like pounding and other times it is more subtle--like it beats harder after a hot shower or climbing the stairs.

    I do experience the burping thing like you described it, but no rash or redness, and only hot flashes around my period usually.

  7. I am skinny. I guess for as long as I can remember I could see my heart beating right below the breast bone and kind of down my abdomen. I once asked a doc about this (I am a nurse, and didn't want to have an abdominal anurism sp? go undiagnosed :unsure: ).

    Anyway, it seems like it is way more noticeable now lately (last week or so). I kind of feel this tightness in my chest and I think that might be gas related, because sometimes I'll just have this big burb (that I don't usually have). I'll reach down and touch my upper abdomen and can feel it pulsating. Also the last week, my hands and feet are very cold a lot (our weather is just now getting cooler). I was out of town this past weekend and could very well have gotten glutened (my reactions are not as bad now, that I have been gluten-free for awhile).

    I am under a lot of stress too. Nothing bad, just real real busy. I feel like I am always on the go, and I know my diet has suffered (NO, I have not cheated, I would never do that).

    So anyone else experience this? It may very well be stress. I have had these symptoms before, and like I said I have always seen the pulsating in the middle of my chest--it's just more noticeable now.


  8. Now since I have been gluten-free for awile, I am thinking that my "recovery" has reached a plateau with regards to simply being gluten-free. I have been doing some research and have found that there are a few diets and supplement ideas for people with chronic digestive disorders such as Celiac Disease. I have not seen many other "diets" talked about here other than our good ol' gluten-free diet. My hypothesis here is that there is some "total healing" that still needs to take place--not only in the gut but the rest of the body as well. Although I suspect of course that it all begins in the gut. For example an overgrowth of yeast can cause intestinal damage and needs to be dealt with. Even after one has removed gluten from his/her diet, he/she may have other issues to deal with--such as a yeast overgrowth, or other "bad" bacteria infestation, etc. In fact, it is now suspected that many other disorders originate from problems in the gut--such as certain forms of autism and other behavioral disorders. Since some of us are further along on our journey than others and have done more research than others, I thought it would be good to share what supplements we use (with a brief why), and what other diets and/or treatments we have used (with a brief why).

    Here are mine (I don't take much--I am researching things, which is why I posted this B) ).

    1. Supplements: New Chapter probiotics--9 billion (3 caps) in the am on empty stomach. Why? I suspect my good bacteria count to be down, and will back off to a maintenance dose in a week or so. New Chapter was recommended by very knowledgeable newly liscensed-not-yet-practicing chiropractor who works at Vitamin Shoppe and it was cheaper than Natren which I knew was good.

    2. Vitamins: still researching do I need multi, B complex and what about Cal/Mag combo?

    3. Diets: gluten-free of course. Recently started Maker's Diet. Sugar is totally restricted accept minimal amounts of pure forms such as raw honey and maple syrup--this is hard for me (sugar addict :D ). High protein, high fat (good fat--coconut oil, olive oil, animal fat), high raw veggie emphasis and fruit. Pretty much a primitive diet. All organic with an additional emphasis on raw goat's milk products that are supposed to be VERY beneficial for gut disorders such as Celiac.

    I also have interest in the SPECIFIC CARBOHYDRATE DIET which is highly recommended for celiac disease, but is a bit more restrictive than even the Maker's Diet--but a lot of the same ideas.

    4. Enzymes: Still researching, but pretty ready to take this plunge as it has been HIGHLY recommended from people here, other nutrition books, and other naturally minded health concious people I know--plus it makes physiological sense to me.

    Ok, so that's me......what about you? :)

  9. I can't take hormonal BC anymore. We use FAM here. I don't know if it was a pregnancy or the BC that triggered my celiac disease but I blame something like that. Now I may have had this my whole life, but I started having symtoms after baby #2. i got better going gluten-free and then still better when I went off of the BC, still have some issues but I know I can't do hormones.

    Just my experience.

  10. I am going to hop on the exercise train again soon here. I have osteopenia and the doc said I need to do weight bearing exercise. I have since heard that lifting weights is the best thing to get bone growth--muscle grows the bone has to grow with it. I think I am going to start my am yoga stretches again too as I am very inflexible and really need to work on this.

    Bob, I get chest pains sometimes too. The docs think it is muscular and i have had EKG and bloodwork and echocardiogram done too to be on the cautious side. I agree with others, that it is definately worth mentioning to your doc--(I am a CCU nurse B) ). But I thought I would let you know it could be something muscular like costochondritis. It is scary though, because it does sometimes feel like it could be cardiac or something, but for me I have decided it must not be. I just know how it can feel to have a symptom that others don't seem to have and you mention it and people are like "RUN don't walk to the doc about this!" . The anxiety of that could bring on a heart attack all by itself :lol: ! Anyway you need to be smart, and if you get any other symtpoms with that pain then by all means see your doc soon. Otherwise you still should mention it when you get a chance, but it could very well be muscular--esp. b/c increased activity seems to relieve it.

    Take care and happy walking!

  11. Ok, so I have been gluten-free for about nine months with accidents in the early months of course, but I know what I am doing now. I think :rolleyes: . Anyway, I still bloat. I started the Maker's Diet in hopes of regaining really good health and I think I started to detox really fast. I started allowing myself some things like Buckwheat waffles and gluten-free bread (just a little) and some dairy and started bloating again. Now I don't think it is the dairy, because I have had it without any bloating before...someone told me today that a friend of theirs who has celiac can't have citric acid because it is sometimes made from a gluten source! Now while I have tried to go "all natural" with stuff there are some things I have that are preserved with citric acid...like chopped garlic and some fruit.

    Because I feel so much better than I did I wasn't even going to worry about it...but now that I think about it I am still tired a lot, and have bouts with low energy and occassional abdominal pains. I think sugar is involved in this too, and I have drastically cut back, and when I went off the wagon with the sugar this past week, the bloating returned.

    Sorry this post is sort of all over the place, but I am hoping to get some insight from anyone who might have struggled with this too, and if anyone has found sugar to be a culprit in not feeling well. It is one of the few great things we get to eat....maybe some of us overdo it? :unsure:

    One more question. Is it normal to have SOME bloating? I am really skinny. In the am my tummy is flat as a board, but even when I wasn't bloating...I was...a little bit. It wasn't uncomfortable or anything, and if I hadn't been checking for it, I wouldn't have noticed it--is that kind of "bloating" normal? I was thinking maybe it was b/c I am so skinny. Thoughts?

  12. So, I am trying to find a green superfood supplement that is gluten-free. Now the research I have done so far indicates that wheat grasses and barley grasses are gluten free they are the young plant before the gluten protein "berry" forms--they are cut young. Various manufacturers are all claiming that this is gluten free. The natural health pharmacist lady at a store here told me the same thing once, but she wanted to call the company to double check since this is such an important issue and she couldn't get through.

    Does anyone here supplement with this type of green superfood? Does anyone know about this?

  13. I was diagnosed last May and have been gluten-free since. I was on birth control and that kept some weight on me as well as more frequent pain and constant bloating. That has improved since being off of birth control for approx. 3 months...BUT I am now down to 102lbs, and I am 5'4". My appetitite is not as great since being off the BC, but I eat. I need to eat more, and healthier food. I also have osteopenia so I need to start exercising, but I am afraid to lose more weight. I have always been thin. In HS I actually weighed 120 lbs for about a year or so. I felt much prettier at a "normal" weight. I loved being pregnant for this same reason.

    I am thinking about getting a bread machine and I would like to know how to incorporated coconut oil into my diet. I need a good supplement to with calcium and Vit D (for bone loss). Does anyone know of one that is gluten-free? I suppose that is a different thread. I will keep checking this as I would love to gain some weight, although I am trying not to obsess about it as I have in the past.

  14. She told me the oat flour package said that the oats were grown in a dedicated field, so she assumed they are safe. I tried the bread when I got home and I don't know......I certainly have not had a violent reaction like I have had from eating at a restaurant, but I feel a bit rumbly right now. Yet I have hardly eaten anything today and had some coffee and diet coke--I was at a brunch and those were the only consumable things there. When I got home I was too tired to fix something so I tried the bread.

    Has anyone baked using oat flour? If so, which brand did you use? I would love to try eating oatmeal again, but am afraid to hurt myself. I have read that many here have done fine with Mccanns which is at my local grocery store. Maybe I will try it.

  15. Thanks Richard. I really appreciate your response as one parent to another. It is good to know there are others who have similar situations. And I am with you, I don't want my kids to have to be gluten-free unless it is for sure necessary--I will at least need more than what we currently have to go on to keep them gluten-free. So we shall see what happens in November when they get "challenged".

  16. Thankyou everyone for your responses.


    Thankyou for clarifying the Igg thing for me. I thought that was the case but then when this ped. GI said differently I was confused. In fact, he says that they are talking about throwing the Igg out of the celiac panel alltogether! Still, I am left not knowing what I should do about the kids. The ped. GI did mention genetic testing but said it wasn't a sure thing which confirmed what a geneticist had told our regular ped. as well. Apparently there are many genetic factors with celiac disease and so it can not be nailed down to just one or two tests for sure. Then the endoscopy requires general anethesia and intubation for a child, and of course even if they don't have it now, doesn't mean they won't get it later. So what do I do? I think the doc was right to suggest this home test with the diet-then-challenge thing. We will challenge the kids mid-Nov. and then see the doc again to report what happens. So if nothing happens (they don't get sick with gluten), do I just put them back on a regular diet and watch for signs and symptoms or have them periodically tested with a panel?

    Also, thankyou for clarifying (along with Barbara) that for all practical purposes, there is no difference between gluten intolerance and celiac disease. Even if I don't have celiac disease and only an intolerance, I can surely see that I need to stay gluten-free, especially due to the osteopenia--my mom has full blown osteoporosis, and I don't want that! Not to mention all of the other problems that gluten apparently causes in my body.

  17. Missy,

    I have been trying to get my mom to get an endoscopy. Only one of her antibodies on the celiac panel was out of whack and it was a different one than on mine, but she has very textbook symptoms. I think if I knew she were celiac it may help me to accept my own diagnosis. It's just that to me, it is a really big deal to have this or to think you have this if you really don't, you know? My villi were not even blunted, I think the doc said I have the first stage of damage which is white cell infiltration or something like that.

    I know I need to gluten challenge myself, but I am scared too a little bit. The times I "thought" I got gluten accidentally before were not fun. Still, I think it will tell me something. I want to wait a little longer to have more time off the pill before doing that. One reason I stayed on the pill as long as I did was to give the gluten-free diet a chance to work and so I would know if the diet itself did any good. I did feel better after going gluten-free, a lot better really. However, since being off the pill, I feel MUCH better. I am sane now :lol: , and I am not bloated. Unfortunately, I lost weight and it is still going down. I needed that weight, not the bloating. I guess a lot of that was probably fluid retention, so oh well. My blood pressure is really low now, it was in the 120's while on the pill, and now it is sometimes in the 80's--no wonder I feel so mellow now! B)

  18. Hey everyone!

    I was diagnosed with celiac disease in May, and I have been gluten-free since (with some stumbles along the way of course). In order to understand why I am confused, I have to tell you how it happened that I got diagnosed.

    I started having a lot of abdominal pain, some chest pain, diarrhea (more than usual), and lots of headaches and respiratory infections...AFTER getting on the combo birth control pill. I suspected the pill b/c the abd. pain and chest pain seemed to start around the time I got on it. Now prior to having my babies, I had had no problems with the pill at all. I switched several times and ended up on the patch.

    During this time I was sent to a GI guy who right away suspected celiac disease. I have always been a tiny person and have had diarrhea on and off my whole life, but the bloating and pain had gotten so much worse with the hormones. I told him my pill theory and he agreed that it could aggravate an already existing condition, such as Crohns or Celiac. He ordered a panel on which my antigliadin IGg was high and one other one was borderline but within normal limits. He said this was suggestive of celiac disease but we needed to do an endoscopy.

    The endoscopy came back saying something like infiltration of lymphocytes that could be celiac disease. The doc said even though I didn't have strong blood tests, he believes I have celiac disease, and that even though the villi are not terribly damaged right now, that doesn't mean they won't be if I continue consuming gluten. He said I could have celiac disease and maybe my villi would never flatten, but no one knows and that I should start a gluten-free diet.

    So, I felt better on the diet, with some ups and downs. There were several eating out experineces that left me quite ill, even though everything was supposed to be "gluten-free". I just assumed I had gotten contaminated with gluten.

    Now I have finally gotten off of the birth control and my tummy is flat again! I do not have the pain nearly as much--in fact hardly ever. I am still strictly gluten-free as well.

    Oh, and one more thing, is that I had a bone scan and I have osteopenia. I am 30 yrs. old.

    The reason I am questioning the celiac disease diagnosis, is b/c I am having the kids tested now. They had the exact same lab results that I did, and their GI says based on those lab results and the fact that they eat well and are growing fine, they don't have celiac disease. He says almost ALL celiacs have positive TTG results and that frankly if he had been MY doc, he wouldn't have done the endoscopy. He gave kudos to my GI and said that I am a VERY rare celiac. Because of this he wants to be careful with the kids. He has them on a gluten-free diet until mid- November when he then wants us to challenge them with gluten and see what happens. He wanted to try this first, before something more invasive.

    I am sorry this is so long, but I really don't want my kids to have celiac disease. I want them to be able to eat whatever they want like B-Day cake at parties and goldfish at church....when the doc said that about me being a rare celiac, it made me question my whole diagnosis, and the only reason I was checking the kids was b/c of MY diagnosis. Now obviously my own doc feels strongly that I have celiac disease as he sent a letter to my kids ped. explaining why they need to be tested. Am I foolish to question this? Do others have celiac disease without positive blood results or with only partial positives--like high IgG?


  19. Wow!!! I am soooooo excited!!! I have learned how to have fun without food, if you know what I mean, and I know you do. So to hear that I am actually going to be able to eat yummy food at Disney is so very exciting to me! My kiddos are not gluten-free yet, as they have not had a confirmed diagnosis, but it is good to know that if they do have to end up going gluten-free that we can all still have a great time at Disney!

    OK, I am sounding like a commercial now, but thank you thankyou thankyou for the info!!!!


  20. I got sick the first time I ate at PF Changs. I decided to try again, and you will not believe what happened. My husband ordered off of the gluten-free menu so we could share and I got the spicy chicken, well his came out and I knew the noodles were wheat noodles! I asked about it and the guy took it back into the chef and came back out and said, "It is fine, the sauce is the thing that needs to be gluten-free, the noodles are already gluten-free", so I was still skeptical so my hubby checked the menu and got the manager and sure enough, those were wheat noodles!!!! I had almost tasted them.

    Just goes to show y ou how careful you have to be!

  21. I am one of those women who cannot tolerate bc, of any kind (hormonal) it seems. I have tried various pills and am now on the patch. The patch definately worsens my celiac disease symptoms, although since being gluten-free, it has improved, but still sometimes I have abdominal pain when I havn't eaten anything, and I know it is from the patch. Sadly, the patch made me gain weight, which I so desperately wanted to do, and so now when I go off of it, I am sure I will lose that weight. Anyway, I am researching natural family planning and hoping to be getting off the patch in the next couple of months.

  22. Yes, I am still suspicious of the yogurt. On a previous call to Stoneyfield, I was told the only one that was for sure safe was the plain as well. As for the spices--I am the same in that I only use Mccormick ones because I know they are safe, but in this instance, I had this other spice that was just a single spice from another co (Spice Island) and of course I had bought it "pre-Celiac". My hubby wondered about the pregancy possibility as well... that would be really funny (well maybe not REALLY) because the other two times I have been pregnant I was convinced I just had a virus--I really didn't believe I could be preggo either time! :lol:

    Well, I think it was a virus, and I am feeling much better now. Thanks so much for all the responses--and I DO need to think twice before eating that vanilla yogurt again, or using that spice. ;)

  23. Well the mayo was brand new, never been used. I called the yogurt co. and they said that all the grain alcohol is burned off in the processing and so IF there were any gluten it would have been airborne and not measurable. I am wondering about the Spice Island spice I used and they do not have a ph # to call. I do think it is possible this is a virus. I have eaten a bit today, actually woke up hungry despite still feeling a bit crampy and a bit painful in the abdomen area. The only other thing I can think of is that there was a lot of dairy in my meal, with the ygurt and mayo and all and maybe it was just too much, although I have been able to eat a bowl of ice cream with no problem as well as milk in my cereal, etc.

    I am hoping this is a virus--it will go away.