RESO
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penny_s - you aren't alone! I find myself in a similar situation. I have struggled with my weight my whole life - never obese but always "chunky" - and was diagnosed last year after 15 years of incorrect diagnoses. Going gluten free made all my GI symptoms disappear almost overnight but in the following months, I had the typical weight gain as my intestines healed. I suspect that there was some change in my caloric intake as I tried the gamut of gluten-free foods available at various health food stores but otherwise there was no change in my general eating patterns.
So fast forward a year. The 20 pounds gained last year hasn't budged; the doctor and nutritionist both say there's no reason why I shouldn't be losing weight given my eating and exercise habits; thyroid tests come back fine. So, now what? I can't realistically up my exercise as I'm currently training for an Olympic distance triathlon (1mi swim, 24m bike, 6m run) and already train 6-8 hours per week. I can't realistically cut calories below the 1500-1800 per day that I'm consuming without messing up my training. I do my best to get enough sleep, rarely eat anything packaged and don't drink soda.
I don't know what else to do and I'm working hard to accept that I am healthy and should be happy but the closet full of clothes that I fear will never fit me again does tend to depress me.
I know how you feel about exercising and caloric intake and not losing weight. While you are training for something like a triathlon/marathon, etc. you should not try to lose weight. You may actually gain a few pounds but don't worry, it's extra muscle and will drop off as soon as you stop training. This is not just my opinion, you can ask your doctor and nutritionist for backup.
Doctor and nutritionist say there's no reason you shouldn't be losing weight? Gee, thanks, that's helpful, right? Do they both know you're training for a triathlon? Every person on my marathon team gained weight, from the 22 year old thin and in-shape vegan soccer player to the slightly overweight woman in her 50s. But, funny enough, most of us lost pants sizes! Forget the scale for now and start measuring your waist, etc. to see if your composition changes. Every person on my marathon team also lost that weight after they quit training at that level.
Good luck with your triathlon, I hope it goes really well! and good luck with everything else too.
Renee
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When were you diagnosed with celiac disease and how long have you been 100% gluten free for? (no cheating) ?? I ask because I had these EXACT same symptoms, was diagnosed with POTS and hypothyroidism, and the doctors could not figure out why. I did my own research and found out that, although rare, celiac has been shown to cause these symptoms. I got tested for celiac and it came back positive. Now, after 2 months of being 100% gluten free (not even a crumb) my symptoms are GONE!!!!!!! I am sure that it will depend on how long you have had celiac, to see a difference from your diet, but hang in there-- You just might start feeling amazingly better pretty soon!!!! There absolutely IS a connection, ..the doctors are just too ignorant to realize it.
Wow, that's interesting. In 2002 I developed orthostatic hypotension (blood pressure dropped out when I stood up) and POTS (the racing heartrate when standing). I felt like I was going to pass out and puke at the same time. The doctors never figured it out, but acupuncture helped a LOT. It took about a year to start feeling better and be able to just get off the couch and walk to the bathroom without feeling really crappy (seriously).
I had no symptoms of gluten intolerance back then, but developed severe reaction to gluten (fatigue, constipation, sinusitis, etc.) around March or April of 2008. I went gluten free last October after figuring out what was causing my symptoms, then found out a few months later that I had to be eating gluten to be tested for celiac. Since I'm not about to purposely feel like total crap for months and months, I guess if I do have celiac, it will remain undiagnosed.
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Just an update for anyone interested. I called the Holistic Center here in Kansas City and it is definitely not cheap for treatment. They said it would be $400 an hour, $150 fee for new patients, and additional $75 per visit and usually you need 4-5 visits. On top of that you may need to purchase nutrients and supplements, ehich can average up to $500/month. She also said that they may bill some treatment to insurance, but a lot of it isn't even submitted and is cash basis.
Oh, also...here's the weird thing. The dr. at this center practices whole body/holistic medicine, but also practices traditional medicine to treat symptoms (which would be covered by insurance)...but, you have to decide which route you would like to pursue before your appt. for billing...I found that very odd. What if you would like both?
Keep calling around. Sometimes there are coops and cheaper alternatives, you never know...
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If your state licenses Naturopathic Doctors, then your insurance company is required to pay for their services the same as an MD.
No offense, but I'm pretty sure that's wishful thinking only. Pretty much all states license their acupuncturists, but most insurance won't cover it. The problem with insurance companies is that they are not "required" to do much of anything, IMO...
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Thanks, RESO. I did have the celiac panel and antibody test and it was negative. As for your other comment, my main form of elimination is diarrhea, which sort of contradicts what you say about being underweight...hmmm...anyone else have thoughts on this?
Maybe not everyone who has the diarrhea is underweight. I know I saw a thread recently on this board where someone was asking if there were any other overweight/obese celiacs. Lots of people responded saying they were overweight or obese. Maybe you could post another thread about diarrhea and overweight with celiac disease or you could ask on that other thread?
Another thing to consider is that there are lots of people on this board who have gotten false negatives from blood tests then were diagnosed with a biopsy. You know what they say, if doctors knew what they were doing, they wouldn't call it practicing medicine...
I hope you find a doctor who is able to help you quickly so you can get some kind of diagnosis and start the gluten-free diet or whatever measures you need to feel better.
Take care,
R
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Is anyone familiar with "BAJA FRESH- Mexican Grill" I was given a gift card and we have two restaurants here in Miami. The website was not very helpfull with specific ingredients. I emailed them and I am waiting for their response. But I trust you guys more LOL.
I'm not sure about them but I can tell you that anything with "mexican grill" in the title is not authentic mexican food and therefore they will most likely use a lot more flour. My advice is to go in to the location where you plan to eat during off hours when it's not very busy and ask for the manager. Explain to him/her that you can't eat wheat/rye/barley and ask if there's anything on the menu that you can eat. Make sure you ask not only about the tortillas, but also what goes on or into the meats, beans and rice. If you want something with a hard taco shell, ask if it's fried in a dedicated fryer.
Good luck, hope you can use the gift card. :-)
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McDonald's fries may be gluten free after testing, but is the fryer really dedicated? I would not trust that the employees don't ever accidentally drop in a chicken mcnugget or two or whatever else they fry that contains gluten. It's a personal choice, of course, but I wouldn't trust it unless I knew the people working there and trusted them.
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AFAIK Wendy's "burgers" are gluten free (I put "burgers" in quotes because anything thinner than your average piece of paper is pretty questionable in my book
)BUT -- their fries are listed as gluten-free. They are fried in a "dedicated fryer". HOWEVER their fries do not remain gluten-free.
In every Wendy's I've ever been in, the chicken fryer is to left side and the FF fryer to the right; and the rack where they dump the food out is to the right of that. So they pull the fry baskets out of the chicken, cross over the FF fryer, and to the place where the chicken is removed from the basket. Cross contamination.
Wendy's was wholly unconcerned when I called to complain and refused to post a warning.
I checked wendy's web site about a month ago and they state that their fries are gluten free however they are NOT fried in a dedicated fryer so they recommend people with gluten allergies don't eat them. My local Wendy's has no information but there is a gluten free menu on the web site.
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I also wanted to ask if all of the tests my dr did would be an indicattion of gluten? I can't remember all of them, but it was definitely a long list of blood tests included a cbc, sed rate, thyroid, phosphate, etc. and a list of stool tests as well. I didn't see the actual results, but the nurse said everythig was fine. If there were something more than "just IBS" would it appear on these tests??? I hope more of you can share with me
thanks!Whatever tests they did, it sounds like they didn't do the gluten antibody test, so if they didn't do that specific test, sensitivity to gluten would not show up. You have the right as a patient to a copy of all of those test results, ask for them so you can at least see them and perhaps take them to another dr.
My doctor did a full blood panel last August (CBC, white cells, all that stuff including thyroid, liver, kidneys, cholesterol, etc). According to all of the tests, I am the picture of perfect health. They did not explain why I was so tired (tired seems like an understatement, lol) all the time or any of my other symptoms. He thought I might have environmental allergies due to my severe sinusitis. It wasn't until I quit eating gluten a couple months later that my symptoms started going away. This is a dr. I really liked and respected but he didn't catch it. Of course, I don't think I mentioned my digestive symptoms to him, so....
Keep switching doctors until you find one that actually LISTENS to you. It may take several, since most are idiots, in my experience. If a Dr. starts lecturing you about not following up with your previous doctor, or you feel he/she isn't listening to you, get up and walk out. Many celiacs are overweight or even obese before they start the diet. One of my problems was I could not lose weight no matter what I ate or how much I exercised, and when I went gluten free, I lost 10 pounds in less than a month. I am overweight, but nowhere near obese. I think it has to do with whether you have diarrhea or constipation as a symptom. If you have the diarrhea, you can't keep any weight on. If you have the constipation, well, if you're ingesting food and can't poop it out....
Anyway, I hope you feel better soon.
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My assumption is this type of care is not generally covered through insurance, am I wrong? I went to see an allergist several years ago who practiced holistic medicine and ended up with over a thousand dollar medical bill. That was a rough lesson to learn! Do you find your treatment to be very expensive? Thanks for the reply
Usually most alternative medicine is not covered. Although my new insurance says if a regular MD refers you to acupuncture for chronic pain, they will cover it in some cases. So I guess it depends if you can get your Dr. on board. Ask first about rates before you make an appt.
I have had very good results with acupuncture, so that's what I'd recommend (unless you have a fear of needles, of course). Not sure about the naturopathic route, I had a treatment for migraines once and it didn't help at all. But I won't discount it completely because I know other people who say it has helped.
Whatever you decide, I hope you feel better soon.
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Thanks for the heads up. i am torn, burtons, legas, woodsmans.. if it wasn't so hot out i would get take out at woodmans eat it on the beach w/wine,, but then i have to deal with the seagulls and no see um flys...
This post is probably too late, but I will say I don't know anything about Burton's. However, I highly recommend legal seafoods, great gluten-free food and service. Have fun whatever you decide. :-)
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Anything on food is cooked into it. It would be like eating toppings off a regular pizza - you would get sick. I had a someone invite me to dinner and she was using a marinade on a roast which contained wheat and she thought it would just cook away. She's a nurse, so there is a lot of misinformation out there.
I don't know about other places, but I buy the Costco rotisserie chickens because they say Gluten Free right on the label. I am so grateful to Costco for this. They are a great deal and you can make different things with them (tacos, soups, etc.).
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Faith,
My two cents would be to save your receipts when you buy stuff. I have never had a problem with returning something to a store as long as I haven't opened it and have the receipt. I have asked at many markets (from mom and pops to chains) when I am not sure about a product I want to purchase if it is ok if I return the product with receipt unopened if I find that it contains something I cannot eat, and I have always been able to return stuff. gluten-free diet costs so much anyway, don't waste your money.
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Hypoglycemia can be caused by a lot of different things, and over production by the pancreas prior to it giving up is only one of them.
The other reason it's very useful to know what's going on is that diabetic hypoglycemia and non-diabetic hypoglycemia are treated a little differently. (Well, best treated, anyway.) If you have reactive hypoglycemia (cause isn't really well understood), and you find yourself with low blood sugar, and use the advice of a glass of juice or something else high sugar - you'll get a rebound effect. You'll feel fine for half an hour, an hour, and then - since your body is either producing a whole heck of a lot of insulin, or is really reactive to it - you'll crash with an even lower blood sugar. Instead, you would want to consume something with some complex carbs - to raise blood sugar slowly - and some fat/protein - to keep blood sugar levels up as digestion takes a while with everything mixed together. This prevents the wild swings in blood sugar (and hence insulin production rates), and is "easier" on the pancreas.
I find that protein works best, and animal protein works the fastest. Apologies to vegetarians/vegans, but it's the truth. I carry wheat free energy bars everywhere I go (they're actually vegan as well) that have a few grams of protein and (I'm pretty sure) gluten-free oats - I have never reacted to them and I am VERY sensitive to gluten.
If I eat sugar or something for a quick fix, I crash again within minutes, so I guess I have the reactive kind? Thanks for the info and taking all the time to explain this stuff.
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I keep seeing these abbreviations, dd, ds, dh... I guess the second letter is daughter, son, husband? But what is this first d? darling? doofus? dear? deer? dainty? deliberate? disconcerting?
Thanks if someone can explain. -
Sorry, not a teen but had to weigh in. My mother always told me that hypoglycemia could turn into diabetes. But the last 3-5 doctors I have spoken with have told me that one has NOTHING to do with the other. Not that I think doctors know much about anything, but I find it curious that they would say that while everyone on this forum seems to believe the opposite. I am hypoglycemic and diabetes runs on both sides of my family so it scares me to death. I don't completely avoid sugar but I try to limit it. Just my 2 cents.
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The apartment should have been professionally cleaned before you moved in, that's what most people have to do to get back their deposit, or the landlord does it. I guess it doesn't hurt to be extra cautious, though.
If there's a toaster there, don't use it. :-)
Congratulations on your new place.
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I posted this last night but don't see it on the list. I saw this thread in read, does that mean it addresses my question and I shouldn't post. Not sure, will need to read up more on the rules. In the meantime, here's the post again....I have eaten gluten all my life, decided two weeks ago to be gluten free and feel tons better, have a test on the 9th. Thanks for reading.
Hi Freda,
The thread in red means it's a hot topic, not that you shouldn't post.
As far as the gluten challenge, I will let someone else give the definitive answer since I am not an expert. But may I suggest that if you must do a gluten challenge, reschedule the test until well after you come back from Vegas so you can enjoy your vacation? Just a thought.
R
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Thanks Reso!
They said because I had both genetic markers as positive, I needed to have the endoscopy. I debated back and forth with the medical assistant to make double and triple sure about this. At first I was terrified b/c I knew that I had elevated blood calcium levels (which is sometimes indicative of cancer) and decreased phosphatase (?). Sometimes the internet is wonderful for research and other times it can scare the daylights out of ya!
my hubby is pissed beyond belief b/c he saw how much pain i went through after just 2 slices of bread.
oomph!
I'm googling 'gluten challenge' now just to be sure 3 weeks is enough, or can i get away with 2 weeks of hell. I still have time to decide...
Please don't forget that you have the right to refuse. It's your body, they are not the ones who will have to suffer so it is very easy for them to tell you that you "have" to make yourself ill in order to get diagnosed. You might end up with a false negative anyway, the standard I have heard about for gluten challenges is 3 months, not 3 weeks. Don't forget that you will most likely feel like total crap far beyond those 3 weeks or however long you are eating gluten while the gluten gets out of your system. Get a second opinion, I know with insurance this can be difficult, but not impossible. Another option is to find a doctor that will not insist you hurt yourself in order to get a "diagnosis". Doctors suck....
Whatever you decide, I hope you recover quickly.
R
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Cynth11,
I would say don't do it at all but that is your decision. I know you're trying to protect your kids, but if you get tested and are positive, ironically, docs will probably tell you that the whole family should be tested since it's hereditary
I stopped eating gluten last October and didn't start feeling close to normal until mid-July, so when asked about eating gluten again for a test, I said no...um, fruity?....way!!!! Again, though, this is a personal decision. Remember if you do have Celiac, you will be damaging your body by ingesting gluten.
You said the gastro told you that you didn't need the endo, then you got a call that they had scheduled it? If it were me, I would call back and ask her why she changed her mind??? There is a slight possibility that it was scheduled in error, most people in medical offices are overworked and mistakes can happen. If she did change her mind, I would want her to give me some solid reasons why I should put myself through feeling so sick?
Good luck with everything whatever you decide.
Sabrina,
Some docs will take reaction to diet and blood tests into consideration, others will insist on biopsy. But guess what, biopsies can be falsely negative too. I just don't understand why they can't come up with a simple test so people don't have to make themselves sick on purpose.
Best,
R
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If it were my wedding I would: a- want my guests to have a good time and b- not want them to bug me with how they did it.
If you want to ask the caterers about their food, just call them. If you're bringing your own, just do it. When you show up, head for the kitchen and find who to talk to. Leave your box of food with them with carefully written instructions attached to the box in case the person you talk to isn't there.
I would be too paranoid to leave the food with the kitchen. I would be afraid someone would either contaminate the food by accident or throw it in the garbage. Just sayin....
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Wow, really? Gluten free options? That's cool.
I had problems with the fundraising too, but I just took a couple of hours each week to walk around downtown Santa Cruz and hit up every local business for donations. I'm not shy, obviously, lol. You do have to expect a lot of rejections but I was finished fundraising by the time the final commitment papers had to be signed. I actually was going to do Sacramento, but my coach convinced me that if I could raise enough I should do Hawaii. Once I raised enough by the recommitment deadline, I switched.
You can't count on the water stops at the marathon, unless you are sure they are using an energy drink you have had before (you don't want to end up "running" in the bathroom instead of running the marathon, lol). I don't know the area very well yet, but I have seen a running store on Boylston St in the vicinity of Copley Square. The employees of those stores are usually pretty knowledgeable about energy drinks, gu, etc.
Your coach is right, the gu is not good by itself. You want something you can chew as well as the gu if you use it. I did not use it and I had a great run. If you don't end up liking the california suncakes (they are not very sweet, only fruit sugar, so many people don't like them because we Americans are used to eating crap loaded with sugar. I love them, though), Cambridge Naturals in Porter Square has gluten-free energy bars that are good (a little too sweet for me) but pricey.
I was very blessed to have a really awesome, knowledgeable coach. I found that out at the marathon, when I ran into other TNT teams that were not nearly as well trained. Good luck with everything. Please keep me posted.
R
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I'm running the Maine Marathon and am gluten intolerant. Does anyone have any suggestions on good ways to carb load the night before?? Also suggestions for the morning of the race?? I have been getting the Gu gels and "enjoy" them..lol. At least I won't complain, they could be worse, and having the gluten intolerance has really made me stop obsessing so much over weird textures in foods!
*Shameless plug* Also, if any of you out there would like to help out and donate to the Leukemia and Lymphoma Society to support me, I'd appreciate it :-) There is a bonus if you are in the Boston area, I'm giving away some Red Sox Tickets... heck even if you aren't and you win, you could sell them :-)
Go Team! I did the Honolulu marathon in 2006 for LLS/TNT (before gluten issues) when I lived in California. I recently moved to the Boston area. I can't support you financially but I can lend emotional support. Gu...ick! (didn't end up using it, lol. Too hard on the stomach.). I found these great energy bars from california suncakes (californiasuncakes.com), they are vegan (if dairy's an issue) and wheat free, but do contain oats. I have never had a reaction to them, and I react to wheat, rye and barley, so I'd say they're safe but it's up to you.
Rice, and lots of it. The carbo-loading party they do the night before your race will be off limits to you - there won't be anything you will be able to eat, unless they've made changes to the menu. If you eat fish, I would suggest sushi (no eel or any fish that has sauce on it, of course), rice (brown rice is probably preferable), quinoa, fresh veggies and fruits. Talk to your team coordinator (not sure that's the right title) and/or your coach and/or mentors about what you will eat the night before. If you haven't had the nutrition seminar yet, be sure and ask about gluten-free carbo-loading (though they may not know...)
During the race, you should not eat or drink anything new, so I hope you have plenty of time before the marathon to experiment (in other words, I hope it's not next week). You're gonna need your electrolyte drink and energy bars (and gu, if it works for you), packed on your belt for the race and will need to eat/drink along the race route. The morning of the race, eat what you normally eat for breakfast (the mantra from my coach was "nothing new on marathon day. follow your usual routine"), especially on days you train. Come up with a breakfast that you will be able to get the morning of the race (if eggs, for example, get them the night before to eat in the morning).
Good luck and let me know if you want more pointers/have further questions.
R
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Ahhhhhhhhhhhh, after begging in tears yesterday morning to Dr. Leffler's receptionist at Beth Israel Deasoness Celiac Center in Boston and literally then, getting down on my hands and knees in my dining room in NC looking upwards and praying my head off (mind you I am an Episcopalian and not an overly religious one at that!), a miracle occured! A patient who had an 8 am appt this morning, canceled and as we speak, my son Peter is being seen by Dr. Leffler! I have shed tears of gratitude and now hope to good God that at least Peter is told that he has not lost his mind and that someone can diagnose him accurately. If not Celiac, then hopefully he can be moved onto whomever can help him best with whatever other possibilities there are. Leffler looks to have an excellent reputation, background of training with Dr. Peter Green in NY and currently working with Dr. Cieran Kelly in BI. All who have written -- thank you so much so far... very, very helpful. Ann, waiting with baited breath.....
That's great!!!! Please definitely let us know how it goes. Whatever is wrong, I hope they figure it out quickly.
Is Pastrami Gluten-free
in Gluten-Free Foods, Products, Shopping & Medications
Posted
Hello,
I have looked all over the internet to determine if pastrami is gluten-free or not and unable to find a straight answer. Does anyone know what's in it besides meat and pepper? Also, is it one of those yes or no things, or does it depend on the brand?
Thanks very much,
Renee